Before becoming ill, I read some. I was mostly reading non-fiction accounts of polar expeditions and dog sled races with the occasional novel thrown in. Since becoming ill I read quite a lot. It's something low energy I can do lying in bed and I also read to put myself to sleep at night.
My favourite books fall into two categories. The first category is novels that make me think differently in some way. Perhaps they offer a perspective I've never considered, for example. The story/plot has to be good and fairly quick moving and most importantly the characters and relationships real. My other favourite genre is teen and young adult fantasy. Bizarre, I know. I'm not sure why but it started with the Harry Potter books (I've read the whole series more than 7 times) and branched out from there.
Most of the books I read this year were good, a few were just great. I bolded my 5 favourites of the year.
*1. Great Expectations - Charles Dickens
*2. The Flying Troutmans - Miriam Toews
3. The Lightning Thief - Rick Riordan
4. The Sea of Monsters - Rick Riordan
5. Gods Behaving Badly - Marie Phillips
6. Harry Potter and the Prisoner of Azkaban
7. The Titan's Curse - Rick Riordan
8. The Battle of the Labyrinth - Rick Riordan
9. The Last Olympian - Rick Riordan
10. The wolves of Algonquin Park: A 12 year ecological study - Theberge and Theberge
11. Rainbow Boys - Alex Sanchez
12. Harry Potter and the Half-Blood Prince - J.K. Rowling
13. Harry Potter and the Deathly Hallows
14. Little Bee - Chris Cleave
15. The Summer of My Amazing Luck - Miriam Toews
16. The Girl with the Dragon Tattoo - Karl Stig-Erland Larsson
17. The Middle Place - Kelly Corrigan
18. Anansi Boys - Neil Gaimon
19. Pigs in Heaven - Barbara Kingslover
20. Slam - Nick Hornby
21. When You Are Engulfed in Flames - David Sedaris
22. I am the Messenger - Markus Zusak
23. The Gin & Tonic Gardener - Janice Wells
24. Over Sea, Under Stone - Susan Cooper
25. The Dark is Rising - Susan Cooper
26. The Magician - Michael Scott
27. Harry Potter and the Chamber of Secrets - Rowling
28. The Forgotten Garden - Kate Morton
29. The Guernsey Literary and Potato Peel Pie Society - Mary Ann Shaffer and Annie Barrows
30. Graceling - Kristin Cashore
31. The Brief Wondrous Life of Oscar Wao - Junot Diaz
32. Of Wolves and Men - Barry Lopez
33. Harry Potter and the Order of the Phoenix - JK Rowling
*34. Ordinary Wolves - Seth Kantner
35. Speak - Laurie Halse Anderson
36. Secret Daughter - Shilpi S. Gowda
37. Mister Pip - Lloyd Jones
38. Mocking Jay - Suzanne Collins
39. Harry Potter and the Goblet of Fire - Rowling
*40. Super Sad True Love Story - Gary Shteyngart
41. Red Bird - Mary Oliver
42. Tomorrow When the War Began. - John Marsden
43. The Astonishing Life of Octavian Nothing, Traitor to the Nation, Volume I: The Pox Pary - M.T. Anderson
44. The Dead of Night - John Marsden
45. The Third Day, The Frost - Marsden
46. Darkness, Be My Friend - Marsden
47. Burning for Revenge - Marsden
48. The Night is for Hunting - Marsden
49. The Other Side of Dawn - Marsden
50. Drug Letting and Miraculous Cures - Vincent Lam
51. A Christmas Carol - Charles Dickens
*52. Lullabies for Little Criminals - Heather O'Neill
53. Dress your Family in Corduroy and Denim - David Sedaris
54. Sarah's Key - Tatiana De Rosnay
55. Incarceron - Catherine Fisher
56. Artemis Fowl: The Lost City - Eoin Colfer
Tuesday, December 28, 2010
Tuesday, December 21, 2010
Specialist Appointment
I saw my specialist. It was a good appointment, but as always, it seemed too short. Since I'm down south visiting family for a week (where there is a Gama lab) she decided to run a whole slew of tests on me- infections, flow cytometry, WBC etc. It will be interesting to see if anything comes of it.
I'm quite busy visiting family (including my 5 and 6 year old nephew and niece). I hope I don't have to spend weeks recovering from this visit. Fingers crossed.
Dizziness is improved, still having occasional nausea and vomiting.
I hope everyone is doing OK....sorry I haven't had much time to read and comment on blogs.
To all those who celebrate, Merry Christmas.
I'm quite busy visiting family (including my 5 and 6 year old nephew and niece). I hope I don't have to spend weeks recovering from this visit. Fingers crossed.
Dizziness is improved, still having occasional nausea and vomiting.
I hope everyone is doing OK....sorry I haven't had much time to read and comment on blogs.
To all those who celebrate, Merry Christmas.
Saturday, December 11, 2010
spinning holiday cards
I thought I'd share my homemade holiday cards. I say holiday, because not all of the people I send them to necessarily celebrate Christmas. I send them in December (if I've been up to carving and printing something). The spruce one doesn't come out too well here, but it turned out OK enough that I'm sending it. The raven is a print I did over a year ago and reprinted on the press in November. Yes, a little bleak for a holiday card, but I like it and I sent it to folks who I figured would like it as well.
Health wise I'm not at my worst, although I'm not feeling great either. It seems the last two years I've been living on this plateau where I go through ups and downs but don't see any worsening or improving in my condition overall.
My concern the last few days (besides the sicky influenzaishache/chest ache) is I'm dealing with both OI (orthostatic intolerance - hypotension) and also a type of vertigo I get. My head feels full and if I look at anything more distant (like the birds out the window or the TV from the couch) I get a minor, disconcerting spinning sensation. If I'm looking at something that moves, the vertigo is definitely worse. It's like being mildly drunk. I'm wondering if anyone out there gets this and if so, whether you have any advice for me? I seem to be able to do short computer stints and some reading. It bothers me most if I'm moving or something in the distance is moving. I've had bouts of this vertigo since I got sick. Mostly I'm just laying in bed - resting and reading with the lighting low. I hope it goes away soon.
Monday, December 6, 2010
Cycles
For whatever reason, I often post when I'm feeling pretty sick.
Usually in the afternoon on a bad day. The last two days I've been feeling decent and I've been out of the house both days. So I thought I'd post now rather then when the crash hits (if it does).
I think I write when I'm feeling especially sick because it's a release .....as many of you who read this know through personal experience, there can be a cathartic effect when writing about how difficult it is to suffer chronic illness. Sometimes after writing, I feel like I've let go of something, but also that I may have connected - that I'm not alone, and I've sent my voice out into the great universe (or Internet as the case may be).
Morning is my best time of day. I always feel the least sick about an hour after I wake up. This is usually the time when I do some work if I have some to do (reading, editing, marking, writing).
My experience with this illness is an experience of cycles.
I have daily cycles - morning OK (or least sick) with increasing fatigue over the end of the morning into the afternoon, usually peaking in the 3-5 pm period. After 6pm I start to pick up a bit. I feel better than the afternoon, but still sicker than the a.m.
During the week I also have good and bad days...this can relate to how much I've been doing and if I crash, generally it's about 36 hours after an activity.
Then there's the yearly cycle...I got sick on the weekend of June 15th, 2002 and for the first several years during the fall I thought I was "getting better" only to be thrown into some-kind of relapse later in the winter. After 8 years I think I have enough evidence to support my observation that I seem to pick up every fall and then get worse sometime in the winter (late Dec., January, or Feb). My worst months generally seem to be March and or April.
For as long as I can remember, I've felt a connection and draw towards the natural world. I don't need to go into a history of me, but I spent much of my childhood outdoors playing in the fields, ponds and woods near our home. This love and passion led me to pursue degrees in outdoor recreation and natural science as well as a career in outdoor environmental education (for 8 of those years as a wilderness guide working mostly with youth).
As someone who spent so many years outdoors, I was (and still am - although less so) aware of nature's many cycles. The cycles of the moon and the sun for instance, or the cycle of the seasons. If you stop to think about it, we live in a world of circles or cycles. The earth cycles (rotates) and revolves (circles) around the sun. Life itself is a cycle - birth through death - and when things die and decay they serve to nourish other forms of life through their circle.
So I guess it doesn't surprise me, looking at the big picture, that whatever this illness is, I experience it in cycles. And I'm not alone. Sue at "learning to live with CFS" http://livewithcfs.blogspot.com/2010/12/laura-hillenbrand-in-elle.html
was mentioning a similar daily pattern to mine on her blog last week. However, there seems to be all kinds of variety within the M.E. community. People, for instance who never feel well, or never seem to have a "better" time of day or month. Or others who have an opposite daily pattern to mine - that is, they feel sicker in the morning and best in the afternoon.
If and when this illness ever gets figured out, I don't expect we'll all end up classified as having the same disease. In fact, I barely fit some of the descriptions as it is. I was diagnosed in the U.S.A. with the Fukunda criteria and then when I moved back to Canada with the Canadian Clinical Definition. But when I look at it, it's a stretch http://www.cfids-cab.org/MESA/ccpccd.pdf (for example, my neurocognitive issues are minor and I have no pain outside of throat and lymph nodes).
Usually in the afternoon on a bad day. The last two days I've been feeling decent and I've been out of the house both days. So I thought I'd post now rather then when the crash hits (if it does).
I think I write when I'm feeling especially sick because it's a release .....as many of you who read this know through personal experience, there can be a cathartic effect when writing about how difficult it is to suffer chronic illness. Sometimes after writing, I feel like I've let go of something, but also that I may have connected - that I'm not alone, and I've sent my voice out into the great universe (or Internet as the case may be).
Morning is my best time of day. I always feel the least sick about an hour after I wake up. This is usually the time when I do some work if I have some to do (reading, editing, marking, writing).
My experience with this illness is an experience of cycles.
I have daily cycles - morning OK (or least sick) with increasing fatigue over the end of the morning into the afternoon, usually peaking in the 3-5 pm period. After 6pm I start to pick up a bit. I feel better than the afternoon, but still sicker than the a.m.
During the week I also have good and bad days...this can relate to how much I've been doing and if I crash, generally it's about 36 hours after an activity.
Then there's the yearly cycle...I got sick on the weekend of June 15th, 2002 and for the first several years during the fall I thought I was "getting better" only to be thrown into some-kind of relapse later in the winter. After 8 years I think I have enough evidence to support my observation that I seem to pick up every fall and then get worse sometime in the winter (late Dec., January, or Feb). My worst months generally seem to be March and or April.
For as long as I can remember, I've felt a connection and draw towards the natural world. I don't need to go into a history of me, but I spent much of my childhood outdoors playing in the fields, ponds and woods near our home. This love and passion led me to pursue degrees in outdoor recreation and natural science as well as a career in outdoor environmental education (for 8 of those years as a wilderness guide working mostly with youth).
As someone who spent so many years outdoors, I was (and still am - although less so) aware of nature's many cycles. The cycles of the moon and the sun for instance, or the cycle of the seasons. If you stop to think about it, we live in a world of circles or cycles. The earth cycles (rotates) and revolves (circles) around the sun. Life itself is a cycle - birth through death - and when things die and decay they serve to nourish other forms of life through their circle.
So I guess it doesn't surprise me, looking at the big picture, that whatever this illness is, I experience it in cycles. And I'm not alone. Sue at "learning to live with CFS" http://livewithcfs.blogspot.com/2010/12/laura-hillenbrand-in-elle.html
was mentioning a similar daily pattern to mine on her blog last week. However, there seems to be all kinds of variety within the M.E. community. People, for instance who never feel well, or never seem to have a "better" time of day or month. Or others who have an opposite daily pattern to mine - that is, they feel sicker in the morning and best in the afternoon.
If and when this illness ever gets figured out, I don't expect we'll all end up classified as having the same disease. In fact, I barely fit some of the descriptions as it is. I was diagnosed in the U.S.A. with the Fukunda criteria and then when I moved back to Canada with the Canadian Clinical Definition. But when I look at it, it's a stretch http://www.cfids-cab.org/MESA/ccpccd.pdf (for example, my neurocognitive issues are minor and I have no pain outside of throat and lymph nodes).
Tuesday, November 30, 2010
Taking it easy
I've been taking it easy.
Teaching is done (as well as all my grading)
I'm not taking a course right now
I'm not doing any editing.
I don't think my little get-away a couple weeks ago was a good idea.
I don't blame myself for going because other times I've gone and not suffered significant consequences. But I think at this point in time it was too much.
I live with my friend (and cousin) and her husband. He's been away for a week and a half and she works most evenings. I think the time alone (not counting Teagan my dog) has been good. I've been resting lots. During the day I've been letting my cousin do errands for me and really she does almost all the grocery shopping. I hate feeling dependant or like a burden, but the last couple weeks I've been asking for help, accepting help, and feeling grateful for help. My friend has even done my laundry and this morning I went so far as to ask her to fill the dog food container for me rather than lifting the bag myself. A few times when I've had to go out the last week or so, I've asked her to drive me which really seems to help me from crashing as hard from the outing.
I've been feeling fairly sick. I spent the weekend running low-grade fevers (99-100F) and feeling the chest/breathing ache that comes with my sicker days. Interestingly, though, my throat hasn't been too raw. The fatigue is bad, but not severe. (I mean not severe for M.E. - a normal would probably find it pretty severe).
I was trying to walk 1/2 a block again for a while, but mostly I haven't been doing that either. While I think the movement helps, I've had almost a second sense lately that even that amount of exercise isn't the best idea right now - I think even very short walks are making things worse.
I don't know why I'm treating myself with "kid gloves" right now, but I am.
The idea of being "disabled" is really hard for me to get my head around. For some reason I think of myself as sick, rather than "disabled" although the sickness does impose limits on me.
After 8 years of being sick, usually I take the philosophy that I want to do the absolute most I can within the imposed limits. I want to feel as if I'm doing something useful and/or meaningful. For some reason I don't feel that way right now. I just feel like resting, laying in bed, playing online scrabble, reading, napping, and drinking coffee or tea. I have three events/outings I want to do in the next three weeks. I'm going to rest as much as I can before each of them. Otherwise, I think I'm mostly going to stick with being a shut-in. Maybe I can build enough of a reserve of energy to get through the holidays without a crash.
Teaching is done (as well as all my grading)
I'm not taking a course right now
I'm not doing any editing.
I don't think my little get-away a couple weeks ago was a good idea.
I don't blame myself for going because other times I've gone and not suffered significant consequences. But I think at this point in time it was too much.
I live with my friend (and cousin) and her husband. He's been away for a week and a half and she works most evenings. I think the time alone (not counting Teagan my dog) has been good. I've been resting lots. During the day I've been letting my cousin do errands for me and really she does almost all the grocery shopping. I hate feeling dependant or like a burden, but the last couple weeks I've been asking for help, accepting help, and feeling grateful for help. My friend has even done my laundry and this morning I went so far as to ask her to fill the dog food container for me rather than lifting the bag myself. A few times when I've had to go out the last week or so, I've asked her to drive me which really seems to help me from crashing as hard from the outing.
I've been feeling fairly sick. I spent the weekend running low-grade fevers (99-100F) and feeling the chest/breathing ache that comes with my sicker days. Interestingly, though, my throat hasn't been too raw. The fatigue is bad, but not severe. (I mean not severe for M.E. - a normal would probably find it pretty severe).
I was trying to walk 1/2 a block again for a while, but mostly I haven't been doing that either. While I think the movement helps, I've had almost a second sense lately that even that amount of exercise isn't the best idea right now - I think even very short walks are making things worse.
I don't know why I'm treating myself with "kid gloves" right now, but I am.
The idea of being "disabled" is really hard for me to get my head around. For some reason I think of myself as sick, rather than "disabled" although the sickness does impose limits on me.
After 8 years of being sick, usually I take the philosophy that I want to do the absolute most I can within the imposed limits. I want to feel as if I'm doing something useful and/or meaningful. For some reason I don't feel that way right now. I just feel like resting, laying in bed, playing online scrabble, reading, napping, and drinking coffee or tea. I have three events/outings I want to do in the next three weeks. I'm going to rest as much as I can before each of them. Otherwise, I think I'm mostly going to stick with being a shut-in. Maybe I can build enough of a reserve of energy to get through the holidays without a crash.
Monday, November 22, 2010
Realistic goals
Because my health and functioning status fluctuates, I have trouble setting realistic goals.
I've spent the past week mostly crashed and sick from my little vacation. Almost to the degree that I wish I hadn't gone. It's got me thinking about how to set realistic goals within the limits defined by this chronic illness?
Today I tried going to the grocery store to buy a few vegetables and crashed hard. I'm sure all of you with M.E. know what I'm talking about. The dizziness, weakness and overwhelming flu feeling sets in. Standing in line just for a few minutes was like climbing a mountain (which I've done), but harder. It was all I could do to hold off crying until I hit the car.
It's really hard for me to figure out how to set realistic goals for myself. I don't want to over do it and crash, however, I don't want to give up and never try anything. Over time I've improved to some degree. If I'd never attempted anything, I would have never known what I could/couldn't manage. From those years when I was mostly bed and house-bound, I've re-entered the "real" world in slow steps.
But all of these activities are subject to the moods of the illness. While yesterday I managed to do a little art at home and walk around the block, today I couldn't manage 5 minutes in the grocery store and last Tuesday and Wed. I couldn't manage much more than laying in bed or on the couch - let alone leaving the house.
After posting this, I read a recent blog entry by Laurel who has severe M.E. It relates to some of these questions I'm struggling with and is eloquently written. If interested, check it out here: http://dreamsatstake.blogspot.com/2010/11/finding-grace-when-life-is-hard.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+DreamsAtStake+%28Dreams+At+Stake%29
I've spent the past week mostly crashed and sick from my little vacation. Almost to the degree that I wish I hadn't gone. It's got me thinking about how to set realistic goals within the limits defined by this chronic illness?
Today I tried going to the grocery store to buy a few vegetables and crashed hard. I'm sure all of you with M.E. know what I'm talking about. The dizziness, weakness and overwhelming flu feeling sets in. Standing in line just for a few minutes was like climbing a mountain (which I've done), but harder. It was all I could do to hold off crying until I hit the car.
It's really hard for me to figure out how to set realistic goals for myself. I don't want to over do it and crash, however, I don't want to give up and never try anything. Over time I've improved to some degree. If I'd never attempted anything, I would have never known what I could/couldn't manage. From those years when I was mostly bed and house-bound, I've re-entered the "real" world in slow steps.
- First was a once a week art course - no pressure, no expectations
- Next was the masters degree, the first semester I took only one course
- Next I tried two courses during one 12 week semester and managed (just)
- Doing most my work from home in bed I ended up with a Masters degree after 3 years
- Now I'm plugging away at a PhD slowly, but I wonder if it's a realistic goal given my fluctuating functional status? I had to take medical leave over the summer and this fall (teaching 4 hours a week) I was at my absolute limit.
But all of these activities are subject to the moods of the illness. While yesterday I managed to do a little art at home and walk around the block, today I couldn't manage 5 minutes in the grocery store and last Tuesday and Wed. I couldn't manage much more than laying in bed or on the couch - let alone leaving the house.
- How do I come to terms with these limitations? How do I deal with the fact that my level of disability changes day to day (often unpredictably?)
- How do I set realistic goals within these limitations?
- And for me, the hardest struggle of all is coping with my sickest days....where do I draw the emotional strength to get through them when the "disease" seems to penetrate into my every cell and even breathing hurts?
After posting this, I read a recent blog entry by Laurel who has severe M.E. It relates to some of these questions I'm struggling with and is eloquently written. If interested, check it out here: http://dreamsatstake.blogspot.com/2010/11/finding-grace-when-life-is-hard.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+DreamsAtStake+%28Dreams+At+Stake%29
Sunday, November 14, 2010
Thursday, November 11, 2010
Vacation - Day 2
Some people with M.E are so disabled they can't leave the house. In this case, any kind of vacation that involved travelling would probably cause a relapse.
I have a moderate case of M.E. I contend with flu symptoms, fatigue, and weakness everyday; however, I can fake my way through social gatherings or outings on good days (sometimes even without consequences). I have also managed to study and work a little since 2006. I'm sincerely grateful to be able to do this as I know that the M.E. could be a lot worse.
This week I decided to take my art supplies and travel to a nearby town where there's a printmaking studio for a few days. I've done this other times. I stay at a beautiful but inexpensive little motel. My bedroom has an amazing view of Lake Superior. It's just nice to be some place different. It feels like a vacation.
The most difficult part for me is the drive. Many people with M.E. can't drive for various reasons (dizziness, weakness, the energy it takes). If I drive any kind of distance, I incur a crash the next day. The longer the drive, the worse and longer the crash. The exception is that on a good day I can drive short distances and do an errand (if the errand doesn't take too long).
I drove yesterday to get here (1 1/2 hours) and today I woke up sick and fatigued. I'm looking out my window at the lake and listening to the waves crash on the rocky beach.
I'm hoping to be able to "rally" enough to do a little art today. If not, I'll lie here and enjoy the scenery and feel grateful that I'm well enough to go on vacation. Looking at the Lake I'm once again in awe of this beautiful world that we call home.
I have a moderate case of M.E. I contend with flu symptoms, fatigue, and weakness everyday; however, I can fake my way through social gatherings or outings on good days (sometimes even without consequences). I have also managed to study and work a little since 2006. I'm sincerely grateful to be able to do this as I know that the M.E. could be a lot worse.
This week I decided to take my art supplies and travel to a nearby town where there's a printmaking studio for a few days. I've done this other times. I stay at a beautiful but inexpensive little motel. My bedroom has an amazing view of Lake Superior. It's just nice to be some place different. It feels like a vacation.
The most difficult part for me is the drive. Many people with M.E. can't drive for various reasons (dizziness, weakness, the energy it takes). If I drive any kind of distance, I incur a crash the next day. The longer the drive, the worse and longer the crash. The exception is that on a good day I can drive short distances and do an errand (if the errand doesn't take too long).
I drove yesterday to get here (1 1/2 hours) and today I woke up sick and fatigued. I'm looking out my window at the lake and listening to the waves crash on the rocky beach.
I'm hoping to be able to "rally" enough to do a little art today. If not, I'll lie here and enjoy the scenery and feel grateful that I'm well enough to go on vacation. Looking at the Lake I'm once again in awe of this beautiful world that we call home.
Wednesday, November 3, 2010
Running
I've had a really good four days. Last week I spent 5 or 6 days with some kind of stomach infection (second one of the fall) which was pretty bad. But the last four days I've been wrapping up my class and marking, marking, marking. The whole time I've been feeling pretty decent. I've had to go in to the U for a few hours the last 3 days and I've managed OK. I mean I'm no ball of energy, but the ill feeling has been quite minor.
Yesterday was the final class and one of the students presented a lesson and activity that included running. I could have just passed and "observed" the activity, but instead I participated. My compromise what that I mostly walked. However, at one point I jogged a little and while doing it I was thinking, "This is so nice". "It's been so long" and "Wow, am I ever out of shape!". As I crash from physical activity I wondered yesterday whether I would crash, and if so, when. This morning I woke up and thought I'd gotten away with it. Well it's been exactly 24 hours and it hit at about 22 hours. The immune and fatigue symptoms arrived like a freight train.
It makes the cerebral part of me think about what M.E. really is? I figure:
1. There must be some kind of "damage" happening when I'm active. Something related to energy metabolism. Something that takes 24 to 36 hours to hit the immune and/or metabolic system.
2. Or, if it's some kind of virus, the activity (physical stress) does something to the virus to make it more active....It could be like chicken pox which, once you've had it, lays latent in your body until your immune system becomes super stressed for some reason and you get an outbreak of shingles.
Whatever the case, this is both an interesting and stupid illness.
Yesterday was the final class and one of the students presented a lesson and activity that included running. I could have just passed and "observed" the activity, but instead I participated. My compromise what that I mostly walked. However, at one point I jogged a little and while doing it I was thinking, "This is so nice". "It's been so long" and "Wow, am I ever out of shape!". As I crash from physical activity I wondered yesterday whether I would crash, and if so, when. This morning I woke up and thought I'd gotten away with it. Well it's been exactly 24 hours and it hit at about 22 hours. The immune and fatigue symptoms arrived like a freight train.
It makes the cerebral part of me think about what M.E. really is? I figure:
1. There must be some kind of "damage" happening when I'm active. Something related to energy metabolism. Something that takes 24 to 36 hours to hit the immune and/or metabolic system.
2. Or, if it's some kind of virus, the activity (physical stress) does something to the virus to make it more active....It could be like chicken pox which, once you've had it, lays latent in your body until your immune system becomes super stressed for some reason and you get an outbreak of shingles.
Whatever the case, this is both an interesting and stupid illness.
Monday, October 25, 2010
Why Blog?
I'm thinking this could be a good question both for my fellow bloggers and my friends who read this. I've been wondering why I blog....here's what I've come up with. Some of these have emerged over time.
1. To educate friends and family about the illness
2. To keep people updated on my life
3. To feel part of a larger community of people who suffer disabling chronic illness
4. To share ideas and learn things about research, treatment, and coping with M.E.
5. As an outlet for some of the struggles and successes (hopefully) of living with a misunderstood and often marginalized illness.
6. As a record for myself.
These are some of the reasons I blog.
But on the other hand, sometimes I wonder - what's the point? A lot of times I write about my struggles with crashes and relapses and my frustrations over always feeling ill. I don't need a public forum to "vent". Why not just keep a journal? I could still follow other people's blogs for a sense of community, information and solidarity.
Thoughts?
1. To educate friends and family about the illness
2. To keep people updated on my life
3. To feel part of a larger community of people who suffer disabling chronic illness
4. To share ideas and learn things about research, treatment, and coping with M.E.
5. As an outlet for some of the struggles and successes (hopefully) of living with a misunderstood and often marginalized illness.
6. As a record for myself.
These are some of the reasons I blog.
But on the other hand, sometimes I wonder - what's the point? A lot of times I write about my struggles with crashes and relapses and my frustrations over always feeling ill. I don't need a public forum to "vent". Why not just keep a journal? I could still follow other people's blogs for a sense of community, information and solidarity.
Thoughts?
Sunday, October 17, 2010
Drive along the Kam
Yesterday I took my parents for a drive along the Kam river. The road winds along the river, then passes quite a few lakes. The whole loop is probably 1 1/2 hours to drive, but we stopped along the way. I shared the driving with my dad. It was my only day of their visit with a chance to do an outing as I had a day before and after to rest. There was one part of the river with a little canyon/gorge and a big white sand beach. We stopped and just admired it. Teagan (my dog) ran around the beach and rolled in the sand. It was incredibly beautiful and the photos (below) just don't do it justice.It was nice to get out and enjoy the day. We were gone about 3 hours. I held myself back several times (from walking much, or doing the driving). Today I'm crashed, but not too badly. Just lymph nodes, throat ,and fatigue/weakness. Not as fluey/achy as I have been much of the last week.
I know quite a few people with M.E. Some crash to varying degrees from emotional, mental, and/or physical stress, but we all seem to have one that is especially consequential. For me, it's physical stress. Anything even remotely cardiovascular causes me to crash. This is not a theory, it's a fact. I kept activity logs for five years and I have learnt that I just can't exercise without paying. I can do some strengthening and movement activity, but as soon as I do anything where I'm "breathing", I end up crashed. This is really too bad as I used to LOVE activity. I ran, rock-climbed, canoed, swam, hiked, sea-kayaked, etc. Now I can't walk two blocks. Well that's not quite true. On a good day I can, but then - about 36 hours later I'm sick and crashed.Sometimes I get so frustrated that someone hasn't figured this out. I have clear signs of illness (crashes, blistered and swollen throat, fevers, low white blood cell count). Why are those of us disabled by illness so deserted by research and medicine? When I look ahead to the future and imagine myself 10 years from now I want to feel hopeful that there might be a treatment. Hopeful that I don't have to live the next 1-40? years ill.
Wednesday, October 13, 2010
6 out of the last 9 days
I'm still going through a bit of a rough patch.
I've spent six of the last nine days mostly in bed. My level of function has dropped considerably the last two weeks - so if I do too much, I'm in bed for a couple days feeling ill.
For example, I went to a party Friday night then spent Saturday, Sunday and Monday mostly in bed. Yesterday (Tues.) I was feeling a bit better. I did an errand at the University and some house cleaning - not surprisingly, today I'm in bed again feeling really ill and fluey.
My parents are visiting for the week. They know I might not be up for much, but still, I did hope to be able to at least sit up and visit.
I feel so exhausted, weak, and viral. I've been laying in bed looking at the antivirals sitting on my shelf and wondering if I should give them another try. When I tried them in August, the side effects were brutal. But maybe if I started really slow (on a super low dose) I wouldn't get the intense nausea. I really want to try something.
I've spent six of the last nine days mostly in bed. My level of function has dropped considerably the last two weeks - so if I do too much, I'm in bed for a couple days feeling ill.
For example, I went to a party Friday night then spent Saturday, Sunday and Monday mostly in bed. Yesterday (Tues.) I was feeling a bit better. I did an errand at the University and some house cleaning - not surprisingly, today I'm in bed again feeling really ill and fluey.
My parents are visiting for the week. They know I might not be up for much, but still, I did hope to be able to at least sit up and visit.
I feel so exhausted, weak, and viral. I've been laying in bed looking at the antivirals sitting on my shelf and wondering if I should give them another try. When I tried them in August, the side effects were brutal. But maybe if I started really slow (on a super low dose) I wouldn't get the intense nausea. I really want to try something.
Wednesday, October 6, 2010
crash
I'm crashed.
Hopefully not for long.
I can't afford to crash for another 4 or 5 weeks.
Why won't this illness adapt itself to fit better into my schedule?
I know I've been busy and pushing my limits...
Doing more than usual almost every day.
But I was managing fine, I didn't see the signs.
Silly me.
I thought I was "getting better".
Well my friend M.E. showed me.
Now I'm in bed.
throat
throat blisters
lymph nodes
major weakness
breathlessness
chest ache
fatigue
ache
Rest...Rest...Rest....Rest....
I hope this is a short crash.
I have things to do.
Things that can't be done in bed with my eyes closed.
Hopefully not for long.
I can't afford to crash for another 4 or 5 weeks.
Why won't this illness adapt itself to fit better into my schedule?
I know I've been busy and pushing my limits...
Doing more than usual almost every day.
But I was managing fine, I didn't see the signs.
Silly me.
I thought I was "getting better".
Well my friend M.E. showed me.
Now I'm in bed.
throat
throat blisters
lymph nodes
major weakness
breathlessness
chest ache
fatigue
ache
Rest...Rest...Rest....Rest....
I hope this is a short crash.
I have things to do.
Things that can't be done in bed with my eyes closed.
Thursday, September 30, 2010
Update
The cold virus moved through quickly. I had two days of feeling really ill followed by a two day crash (from the cold?) where I was reminded that I hate the sick feeling of M.E. far worse than the sick feeling caused by a cold. However, both suck.I'm still crazy busy. In fact, last week I worked 22 hours total (more than half of that at home, but still!!!). I'm in shock that I'm managing, but I'm not complaining. In the back of my mind, I sometimes wonder if I'm going to cross a line and incur a relapse, but at the same time, I want to make the most of it for now, rather than be dictated by fear. I have about five more weeks to go at this pace.
I've been in a dark place psychologically, on days where I'm feeling especially sick lately. I'm not sure if it's because I have to push through despite feeling so ill. I've been thinking things like "I just can't take this constant sick anymore." or "I feel so alone." or "How can I manage another day in this body?". Partly it's knowing that no matter how sick I am, no one to date has really been able to help. And while I know I'm quite ill, I also realize I look healthy. If I share with someone how ill I feel, the fact that I look perfectly well makes my complaint seem dramatic....so mostly I just try to suffer in silence....this only adds to my feelings of isolation.
But I don't' know if I'd be happy if I wasn't doing anything. Ultimately, I really love the teaching. I love connecting with people and feeling like I have something to offer. And the editing work too, has been really rewarding. I've learnt so much. The way things have worked out I just have a little too much on my plate right now, but that's temporary. There are only four weeks of teaching left and the editing/writing work is almost over.
I've posted a couple photos from a few weeks ago. I was trying to capture my favourite season at a nearby park.
Next week I'll post a new "poll of the month" and provide an update on my neutropenia. I have an appointment with my NP to find out if it's improved at all.
Monday, September 20, 2010
cold virus
I've got a nasty cold. The funny thing is that it took me three days before I realized/confirmed it was a cold. M.E. is such a "viral" experience for me that with the sore throat, body ache, and fatigue I thought it was just a "flare" or crash due to the fact that I've been doing so much. When the sinus infection hit yesterday afternoon/evening, I finally clued in.
I taught my class today despite the cold and made it through fine. Now I'm in bed and will stay here for a day or so. I'm feeling so so so so exhausted and sick. Hopefully I'll do my proper weekly blog entry and catch up on people's blogs by next weekend, once I'm feeling better. I hope my readers are doing well.
I taught my class today despite the cold and made it through fine. Now I'm in bed and will stay here for a day or so. I'm feeling so so so so exhausted and sick. Hopefully I'll do my proper weekly blog entry and catch up on people's blogs by next weekend, once I'm feeling better. I hope my readers are doing well.
Sunday, September 12, 2010
The Beauty of the "North"
I live in an amazingly beautiful place. Between Lake Superior (largest freshwater lake in the world), views of it's islands and peninsulas, as well as the local rocky hills, woods, creeks, rivers and inland lakes, there is natural beauty almost everywhere I look.This time of year has become my favourite. I love the cool sunny days when the leaves are starting to turn and all the fall wildflowers are in bloom (asters, goldenrod etc). In the north (north is relative of course), the red osier dogwood leaves turn a brilliant red. I'm posting a few photos from previous years capturing the early fall days in my local region.
My love of this time of year is influenced by the fact that I have better health/more strength in the fall. I don't have to spend every minute feeling completely ill. My fall upswing seems to be here at last!! I been quite busy for me, and sometimes I wonder if I could do more/be more active other times of year as well? I question whether this yearly fall upswing is partly psychological? However, then I remind myself of times like last spring where I DID try to push myself to do more and as a result got so ill I had to spend days at a time, mostly in bed.
For me (by my standards), I've been really busy both teaching and working on an academic journal as an editorial assistant. I've been feeling stressed about everything I have to do. I need to remember just to take it day by day and not worry too much. I need to take a deep breath. As those of you who are ill know, we can't always control when a relapse or crash day will hit. Worrying about it just doesn't help. I had a couple afternoons this past week where I just felt so ill I couldn't bear it - I didn't want to go on, I didn't want to spend another moment in this body. Luckily I know by now it's just a matter of "sticking it out" for a better day, better week. Those times when things aren't too bad. Those days that are very much worth living for.
Despite the bad afternoons, overall, I'm really happy with how I'm managing health-wise. And looking at this month's poll I have to remember to count my blessings that I function as well as I do. Yes, I have to deal with being sick and weaker than I'd like. But I DO have some functionality and I AM able to do some things.....I need to remember to be grateful for what I do have.
Saturday, September 4, 2010
Feels like a new season
The temperature has dropped drastically. Summer feels over. Of course in a week it could be warm again. Also, what with the semester starting and two classes under my belt already, it feels like fall. The Monday class was sweltering hot - unbelievably hot. I was dizzy, but coped and the class went OK. Thursday I have a smaller group and it was cooler. I felt quite ill that afternoon but still manged to "rally" and I enjoyed the group and teaching that day.One of my goals this past summer was to try to camp, hopefully somewhere wildernessy. It didn't happen. I was sicker than usual this summer and I don't think it will happen unless my health improves or I have help to make it happen (e.g. someone else does all the planning, packing, driving, everything). Maybe next year, but I'm not going to get my hopes up. My friend (and housemate) Sue did take me to a friend's house on a lake for the day. It was like a mini vacation without the camping part. We lay on the dock, took a picnic lunch, motored around the lake with the electric motorboat and I even did a super short paddle in the little solo canoe. It was a wonderful day. I crashed for a few days afterwards, however, I think it was worth it just to get out.
I have a new poll of the month up, feel free to vote.
Sunday, August 29, 2010
Upcoming "busy" season and level of functioning
Generally, autumn is my healthiest season. It makes no real sense, however, almost every year since I got ill, I seem to have more energy in the fall then any other time of year. It's not looking good so far this year. I feel like my body is struggling at present. I've been dealing with some infections in my mouth as well as some boils on my body (boils are usually caused by a staph infection). It must be related to the low neutrophil count. I had an "ah ha!" moment when I read this in a MedicineNet description:
"The most common type of infections seen in neutropenic patients are caused by bacteria normally found on the skin (such as Staphylococcus aureus) or from the gastrointestinal and urinary tract.... The infections may be limited to certain areas of the body (commonly the oral cavity, genital area, and skin)".
At least I know why I'm getting these infections lately.
I start teaching tomorrow. I'll be teaching an education elective for 2 hours, 2 times a week for nine weeks. Whether or not I'm "up" for it doesn't matter to me at this point. I'm going to "rally" and do it anyways....at least for a while. The last two falls I've managed to do it.
Which brings me to thinking about level of functioning, or level of disability. I know those of us with this illness all function at different levels. Some are ill, but are still able to push themselves to work or study full time. At the other extreme, some people are so ill, they are bed-bound.
I remember trying to work full time when I first got ill. Then I tried working part-time. I kept getting sicker and sicker. I eventually had to concede that I couldn't work for a while. Now I do graduate studies part-time. I consider myself to have a moderate case of M.E. (at least right now). If I tried to work a full time sedentary job at this point, or even 20hrs a week on a fixed schedule, I am certain I would crash/relapse hard. I go through periods of being house-bound, and I spend a good part of my day laying down. Still, on a good day I can "rally" and go grocery shopping for a half hour, on a 10 min walk, sit at my desk and work for three hours, that type of thing. During a good day or week I've even gone to a 4/5 hour gathering or something similar.
It's probably confusing to people (heck it's confusing for me) because I can function pretty normally for a few hours on a good day. I can pretty easily "pass" as a healthy person. (Of course people don't see the crash afterwards where I may spend hours or days laying in bed recovering).
I'm looking forward to my fall. I'm keeping my fingers crossed that I "manage" without a major relapse because I truly enjoy teaching. I may be blogging less than usual, at least for a while.
"The most common type of infections seen in neutropenic patients are caused by bacteria normally found on the skin (such as Staphylococcus aureus) or from the gastrointestinal and urinary tract.... The infections may be limited to certain areas of the body (commonly the oral cavity, genital area, and skin)".
At least I know why I'm getting these infections lately.
I start teaching tomorrow. I'll be teaching an education elective for 2 hours, 2 times a week for nine weeks. Whether or not I'm "up" for it doesn't matter to me at this point. I'm going to "rally" and do it anyways....at least for a while. The last two falls I've managed to do it.
Which brings me to thinking about level of functioning, or level of disability. I know those of us with this illness all function at different levels. Some are ill, but are still able to push themselves to work or study full time. At the other extreme, some people are so ill, they are bed-bound.
I remember trying to work full time when I first got ill. Then I tried working part-time. I kept getting sicker and sicker. I eventually had to concede that I couldn't work for a while. Now I do graduate studies part-time. I consider myself to have a moderate case of M.E. (at least right now). If I tried to work a full time sedentary job at this point, or even 20hrs a week on a fixed schedule, I am certain I would crash/relapse hard. I go through periods of being house-bound, and I spend a good part of my day laying down. Still, on a good day I can "rally" and go grocery shopping for a half hour, on a 10 min walk, sit at my desk and work for three hours, that type of thing. During a good day or week I've even gone to a 4/5 hour gathering or something similar.
It's probably confusing to people (heck it's confusing for me) because I can function pretty normally for a few hours on a good day. I can pretty easily "pass" as a healthy person. (Of course people don't see the crash afterwards where I may spend hours or days laying in bed recovering).
I'm looking forward to my fall. I'm keeping my fingers crossed that I "manage" without a major relapse because I truly enjoy teaching. I may be blogging less than usual, at least for a while.
Tuesday, August 24, 2010
retrovirus
Another study came out yesterday (Aug. 23rd) linking M.E./CFS to a retrovirus.
I've been following the news about this retrovirus since last October (when a study of positive association between M.E. and XMRV came out). It's been gut-wrenching, to say the least. Mostly I try hard to suppress any feelings of hopefulness about the possibility of tests and treatments for this illness and live the best life I can, despite being so ill.
Priority-wise, M.E./CFS gets an abysmal amount of money or research. I've been sick 8 years and there's barely been a dent in figuring out the illness....that is until the Science paper on the retroviral link first came out last fall.
With the paper published yesterday confirming an association with M.E. and a class of retroviruses, my mind turns towards possible testing and treatment. I even started imagining a life post M.E./CFS which I haven't done in YEARS!!!! Dangerous, yes I know.
I recently signed up to be part of the CFIDS association's Blood Bank. I've now signed consent and filled out the medical questionnaire. I'm hoping that perhaps I might end up in a clinical trial or something (SOON!!!) if I get accepted.
I want out. I want out of this illness if there is a possible way. I want to live a life free of having constant fatigue, weakness and flu symptoms!!!!!!!!!!!!!!!!!!!!
I'm even considering paying out of pocket for the blood test for XMRV at the private lab. Otherwise I may be waiting more years to know if I'm positive or not.
Of all the media articles on the release of the paper, this is perhaps my favourite: http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=2
Health wise I'm up and down the last two weeks. Compared to other Augusts, I'm probably a little sicker than usual. This past week I have a mouth full of canker sores. It's a minor thing, but makes it hard to eat. And they just don't seem to be healing. I wonder if the low WBC is playing a role?
I've been following the news about this retrovirus since last October (when a study of positive association between M.E. and XMRV came out). It's been gut-wrenching, to say the least. Mostly I try hard to suppress any feelings of hopefulness about the possibility of tests and treatments for this illness and live the best life I can, despite being so ill.
Priority-wise, M.E./CFS gets an abysmal amount of money or research. I've been sick 8 years and there's barely been a dent in figuring out the illness....that is until the Science paper on the retroviral link first came out last fall.
With the paper published yesterday confirming an association with M.E. and a class of retroviruses, my mind turns towards possible testing and treatment. I even started imagining a life post M.E./CFS which I haven't done in YEARS!!!! Dangerous, yes I know.
I recently signed up to be part of the CFIDS association's Blood Bank. I've now signed consent and filled out the medical questionnaire. I'm hoping that perhaps I might end up in a clinical trial or something (SOON!!!) if I get accepted.
I want out. I want out of this illness if there is a possible way. I want to live a life free of having constant fatigue, weakness and flu symptoms!!!!!!!!!!!!!!!!!!!!
I'm even considering paying out of pocket for the blood test for XMRV at the private lab. Otherwise I may be waiting more years to know if I'm positive or not.
Of all the media articles on the release of the paper, this is perhaps my favourite: http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=2
Health wise I'm up and down the last two weeks. Compared to other Augusts, I'm probably a little sicker than usual. This past week I have a mouth full of canker sores. It's a minor thing, but makes it hard to eat. And they just don't seem to be healing. I wonder if the low WBC is playing a role?
Monday, August 16, 2010
Neutropenia
I don't think everyone with M.E./CFS suffers from a low White Blood Count (WBC) and Neutropenia. In fact, I've only come across a couple others with this issue. My specialist thinks I have some kind of ongoing underlying viral infection either as the cause or a result (added bonus) of having M.E./CFS. Viral infection is one reason people can have a low number of neutrophils.
I had my yearly physical today and I guess my blood work had shown a lower WBC and neutrophil count then usual putting me into the neutropenia zone. Often when I'm having a flare I get a mildly low WBC (for example, 4.0 is low normal - mine will often be 3.8. Low, but not too low to worry much about).
It's low enough this time that I have mild/mod. neutropenia. I was advised if I get an infection with a fever over 101 F, I should make sure I see a Dr. asap. Go to a walk-in or emergency. It also explains why I had some kind of stomach flu last week and why I've been feeling so beat and run down esp. in the afternoons lately.
I guess the new Dr. showed my Nurse Practitioner the paper work and asked her to phone or talk to me. My Nurse Practitioner who's seen me for five years now told her that this happens occasionally. The new Dr. (who I got the sense thought CFS wasn't a very serious issue and perhaps as much psychological as physiological - see previous post) hopefully got her first taste of how this is a real physical illness. Still, I informed my NP that I'd prefer to see her from now on rather than dealing with someone who's uneducated about M.E. (It just so happens she has a family member with M.E., so she knows about how devastating it can be.)
I had my yearly physical today and I guess my blood work had shown a lower WBC and neutrophil count then usual putting me into the neutropenia zone. Often when I'm having a flare I get a mildly low WBC (for example, 4.0 is low normal - mine will often be 3.8. Low, but not too low to worry much about).
It's low enough this time that I have mild/mod. neutropenia. I was advised if I get an infection with a fever over 101 F, I should make sure I see a Dr. asap. Go to a walk-in or emergency. It also explains why I had some kind of stomach flu last week and why I've been feeling so beat and run down esp. in the afternoons lately.
I guess the new Dr. showed my Nurse Practitioner the paper work and asked her to phone or talk to me. My Nurse Practitioner who's seen me for five years now told her that this happens occasionally. The new Dr. (who I got the sense thought CFS wasn't a very serious issue and perhaps as much psychological as physiological - see previous post) hopefully got her first taste of how this is a real physical illness. Still, I informed my NP that I'd prefer to see her from now on rather than dealing with someone who's uneducated about M.E. (It just so happens she has a family member with M.E., so she knows about how devastating it can be.)
Saturday, August 7, 2010
Dealing with Doctors - especially GP's
I've had a relatively boring week. Health-wise I've been up and down with some decent days and some pretty poor ones. My throat is in a bad flare with mildly swollen glands and blisters. Probably a sign I'm pushing it a bit too hard.
I did have an introductory appointment with another new (ahhhh) GP this week. The GP I've had the last year and 1/2 (I think 4 appointments total) was OK. She wasn't especially versed on M.E./CFS, but she was open minded and humble. For example, she said to me once "There's just lots we don't know about the illness yet". She was a bit older and so I expect she'd seen people over the years with M.E. She also considered it to be a disabling chronic illness.
This new GP is fresh out of medical school and while she may be a nice person, she won't be a good Dr. for me. I'm going to try to stay away from her and go back to using my NP at that clinic as much as possible (if and when I absolutely have to see a Dr.). She said a few ignorant things about M.E./CFS which infuriated me. I'm not going to write them all here, but suffice it to say it was a disappointing appointment. But I have to remember her ignorance is not her fault necessarily. And on paper (test-wise) I look mostly healthy. In fact she said "beside chronic fatigue syndrome you're healthy". Yes, besides the fact that I've suffered flu symptoms and daily fatigue severe enough to disable me for almost 8 years I'm healthy!!!! Give me a break, who says something like that? Would she have said, "Besides the MS (or Cancer), you're healthy." ???? I highly doubt it. I'm going to stop there because I don't want to go down bitter venting street....I just need to let it go and stay away from her.
So my pole of the month (on the right) is for those of you have M.E./CFS. I'm interested in what your overall experience is with regular General Practitioners. If it's like mine it may be varied, but do your best to generalize.
I did have an introductory appointment with another new (ahhhh) GP this week. The GP I've had the last year and 1/2 (I think 4 appointments total) was OK. She wasn't especially versed on M.E./CFS, but she was open minded and humble. For example, she said to me once "There's just lots we don't know about the illness yet". She was a bit older and so I expect she'd seen people over the years with M.E. She also considered it to be a disabling chronic illness.
This new GP is fresh out of medical school and while she may be a nice person, she won't be a good Dr. for me. I'm going to try to stay away from her and go back to using my NP at that clinic as much as possible (if and when I absolutely have to see a Dr.). She said a few ignorant things about M.E./CFS which infuriated me. I'm not going to write them all here, but suffice it to say it was a disappointing appointment. But I have to remember her ignorance is not her fault necessarily. And on paper (test-wise) I look mostly healthy. In fact she said "beside chronic fatigue syndrome you're healthy". Yes, besides the fact that I've suffered flu symptoms and daily fatigue severe enough to disable me for almost 8 years I'm healthy!!!! Give me a break, who says something like that? Would she have said, "Besides the MS (or Cancer), you're healthy." ???? I highly doubt it. I'm going to stop there because I don't want to go down bitter venting street....I just need to let it go and stay away from her.
So my pole of the month (on the right) is for those of you have M.E./CFS. I'm interested in what your overall experience is with regular General Practitioners. If it's like mine it may be varied, but do your best to generalize.
Saturday, July 31, 2010
Art - Creative for a Second
I'm part of the Creative for a Second journal project. These journals (a total of 8 at this point) travel around the world to people with M.E., and when they reach someone, that person has two weeks to do something creative in the journal before passing it on.
I received journal #7 a week ago and it was a little intimidating because I was the first to receive this journal. Originally I was at the bottom of a list so a journal would have arrived full of art and inspiration. Luckily there's a facebook page where people have been posting their work so I didn't really feel like the first one to have to produce something. Some of the art and creativity I've seen posted by people in this project is so amazing! Which is awesome, but also intimidating.
So I decided to do a block print, which is my preferred medium when it comes to art . I'm in no way an artist, but I really love doing amateur printmaking (at least I say I do until I'm in the process and remember how much energy it takes and how many times I produce things I don't like - around 19 out of every 20 blocks I carve).
I'll post the two here that I put in the journal. I also did a creative free verse poem/drawing thing which I'll post here at some point. Photographed, the blue one looks OK, but on paper, the green one (which is my favourite of the two) has some really cool colour tones that just don't show up here. Anyways, It's not my best work. But it did capture a little of what I wanted to express about having M.E....I'll let you interpret it how you want.
Monday, July 26, 2010
To drug or not to drug?
I've been on an antiviral for the past week. At first it caused terrible nausea and headache, even on a low dose.....so I lowered the dose (my Dr. had thought I might need to at first). After lowering the dose, I was able to bear the side effects for the second 1/2 the week. I was VERY weak/fatigued all week and had viral symptoms (sore throat and painful lymph nodes) as bad, if not worse, than usual. The worsened fatigue and viral symptoms could have been caused by the anti-viral, or just a continued crash from my visit south.
I did some online research and found that the antiviral (famciclovir) only keeps herpes viruses from replicating, it doesn't actually get rid of a virus. While my Dr. and I both suspect I have some kind of virus, who knows if this particular drug targets it?......it just got me thinking. In my research, I found one case of a Dr. who had used it in a severe case of mononucleosis with excellent results, otherwise, outside of shingles, simplex herpes, and chicken-pox there isn't much info available.
So, I'm going OFF the drug after only a week.
If later in the summer or autumn I start to get an especially large flare of viral symptoms, I may try it again. Unfortunately I can't discuss this with my Dr. until Dec. when I see her, but I decided the side effects aren't worth it, especially since it seems this antiviral doesn't get rid of viruses anyways.
It's funny because when I feel awful I'm so desperate to "try something" and yet after trying something for only a week I'm deciding it isn't worth the hassle of dealing with the side effects at this point (especially when this antiviral is experimental for M.E./cfs anyways).
The last two days my energy has begun to pick up just a little. I'm hoping the trend continues. I'm desperate to "get out" and do something. For the last week, I've been doing editing work in the mornings (part of my graduate assistant work) and resting in the afternoons and evenings.
I did some online research and found that the antiviral (famciclovir) only keeps herpes viruses from replicating, it doesn't actually get rid of a virus. While my Dr. and I both suspect I have some kind of virus, who knows if this particular drug targets it?......it just got me thinking. In my research, I found one case of a Dr. who had used it in a severe case of mononucleosis with excellent results, otherwise, outside of shingles, simplex herpes, and chicken-pox there isn't much info available.
So, I'm going OFF the drug after only a week.
If later in the summer or autumn I start to get an especially large flare of viral symptoms, I may try it again. Unfortunately I can't discuss this with my Dr. until Dec. when I see her, but I decided the side effects aren't worth it, especially since it seems this antiviral doesn't get rid of viruses anyways.
It's funny because when I feel awful I'm so desperate to "try something" and yet after trying something for only a week I'm deciding it isn't worth the hassle of dealing with the side effects at this point (especially when this antiviral is experimental for M.E./cfs anyways).
The last two days my energy has begun to pick up just a little. I'm hoping the trend continues. I'm desperate to "get out" and do something. For the last week, I've been doing editing work in the mornings (part of my graduate assistant work) and resting in the afternoons and evenings.
Monday, July 19, 2010
placebo effect
Warning: long post ahead!
I've been home for a few days. I've spent most my time resting. It's so nice to have my bed back. As well, while it was great to see family, the pressures and energy of visiting were draining for a person who's ill.
It was ghastly hot down south and that too, took a toll on me. The day my friend Cathy drove me to Toronto to see my specialist, as we were driving into the suburbs, we noticed a haze -almost like a cloud. At first I thought it was the humidity, then I realized it was more than that. It was clearly a haze of poor air quality. It made me feel so spoiled and blessed to live where I do. Although it's been hot here too, the air is cleaner and there is less humidity. My roommate called it "freshness" the other day.
I've been home for a few days. I've spent most my time resting. It's so nice to have my bed back. As well, while it was great to see family, the pressures and energy of visiting were draining for a person who's ill.
It was ghastly hot down south and that too, took a toll on me. The day my friend Cathy drove me to Toronto to see my specialist, as we were driving into the suburbs, we noticed a haze -almost like a cloud. At first I thought it was the humidity, then I realized it was more than that. It was clearly a haze of poor air quality. It made me feel so spoiled and blessed to live where I do. Although it's been hot here too, the air is cleaner and there is less humidity. My roommate called it "freshness" the other day.
The photos I've included here are from day trips to local sights with family. The one of the garden is my mom's "bank". My parents have a steep hill on their property and she's filled it with perennials and flowing bushes as well as little paths made from natural rocks and stones. The photo does not do it justice.
The last day of my visit I saw my specialist. It was a good appointment. It's just such a relief to talk with someone who sees 100's maybe 1000 patients with M.E./CFS a year. She's been doing it over 15 years. There is such a loneliness to having an illness that's invisible (you can't see I'm ill by looking at me) and virtually unknown to most regular GP's. I was so so sick this spring and yet my GP here knew very little about the illness and had nothing useful to offer me.
Among other things, I talked with my specialist about how with M.E. there's such a number of disturbing symptoms. I can't discuss them with my GP without presenting myself as a hypochondriac. Unfortunately, I've had some fairly significant "new" issues this year that I just sat on (and lived with) waiting to see my specialist who I knew would take them seriously. I was able to discuss most of them with her, but it may be that she can't help me too much with them, being that I see her at best maybe two times a year.
My specialist's main form of treatment for everyone is "pacing" and "rest". We talked about my inability to rest when I'm doing well. For some reason when I'm feeling decent I feel as if I want to do lots. I have trouble believing I'm really that sick (even if I was in bed feeling awful a few days earlier). I think it's a combination of things: guilt over being on disability allowance especially on my good days, my desire to be active, my ironically "high" energy personality, not wanting myself or others to perceive me as weak or useless.
Ultimately I think my specialist and I disagree that all relapses are caused by a lack of pacing. I think sometimes as M.E./CFS sufferers we can't control everything. I think we can do everything "right" and still have crashes. That being said, I am going to try to pace a bit better again anyways. When I was visiting family I was feeling decent so I threw caution to the wind and did WAY more than I should have rather than face the awkwardness of having to say "no" I can't do this or that. I get so sick of always having to advocate for myself and my need to pace and rest! Now that I'm home and ill, though, I guess I wish I had insisted on more rest. Maybe the solution is to become a hermit (NOOooooo!).
As for the antiviral, I started today. It will be hard to tell at first if it's working due to the regular fluctuations I have with the illness. Hopefully there aren't too many side effects and I can stay on it for a while and get a sense long-term if it makes a difference.
My Dr. said to be very careful not to push too hard if I start to feel better. She had a physiological reason why, but I can't remember the explanation. Only that if I start to improve, I shouldn't jump into a more active lifestyle - that I should continue to pace and rest throughout the day. As for the placebo effect (improving because you believe something will work) I don't think I will get it. I've tried WAY TOO many treatments over eight years to get my hopes up.
Friday, July 16, 2010
Trying something new.....
I'm exhausted from my trip/visit south. I overdid it (of course). Not sure how long it will take to recover, but I spent most of today in bed (where I am now). I hope if I dedicate the weekend to resting I can start doing some editing type work at home by Monday.
I have some interesting things to report, including a good visit to my specialist - which was much needed. She really is wonderful. I wish I could have had two hours with her, but still she gave me more than 30min instead of the scheduled 20min appointment so I can't complain.
I may try some Famciclovir which in the U.S. is Famvir. It's an antiviral. Has anyone who reads this blog ever tried it for viral/immune symptoms related to M.E./CFS? I did a 3 month round of low dose Valtrex once and didn't notice much difference. We both thought this might be worth a try given my inability to rid myself of what she thinks in an ongoing (eight year long) low-grade viral infection.
Can I just say that this a ridiculously hard illness to understand on so many levels? On that note, I've also just signed consent to have my blood and DNA contributed to the CFIDS BioBank in the U.S. (Canadians are invited to participate which is nice). The samples are "banked" and researchers can use them reducing the time and money researchers put into participant recruitment.
I'll blog again soon, once I've rested up.
I have some interesting things to report, including a good visit to my specialist - which was much needed. She really is wonderful. I wish I could have had two hours with her, but still she gave me more than 30min instead of the scheduled 20min appointment so I can't complain.
I may try some Famciclovir which in the U.S. is Famvir. It's an antiviral. Has anyone who reads this blog ever tried it for viral/immune symptoms related to M.E./CFS? I did a 3 month round of low dose Valtrex once and didn't notice much difference. We both thought this might be worth a try given my inability to rid myself of what she thinks in an ongoing (eight year long) low-grade viral infection.
Can I just say that this a ridiculously hard illness to understand on so many levels? On that note, I've also just signed consent to have my blood and DNA contributed to the CFIDS BioBank in the U.S. (Canadians are invited to participate which is nice). The samples are "banked" and researchers can use them reducing the time and money researchers put into participant recruitment.
I'll blog again soon, once I've rested up.
Saturday, July 10, 2010
Short update
I thought I'd write a short update. I'm in southern Ontario for a few more days....my specialist appointment is on Thursday, then I fly home Friday.
My body has been holding up just great. Even though my family knows about my illness, it always takes a lot of energy visiting. Right now I'm staying with my brother and family and playing lots with the kids (my niece and nephew). This amount of activity two months ago would have completely floored me, however, I'm holding up pretty well. I've been taking rests throughout the day and my usual flu symptoms are very minor. It's so nice to have a break from feeling completely ill and dragged down by my body. Of course I should probably be more prudent so I don't crash from this visit later, but I don't get the feeling I will.
It makes me realize I probably could have managed the month long course. At the same time, I'm not a fortune teller - I can't see the future. I made the best decision I could based on how ill I was three weeks or so ago. I really DO need to get some work done, though. I'm doing an abysmal job of fitting any tasks into my schedule.
My body has been holding up just great. Even though my family knows about my illness, it always takes a lot of energy visiting. Right now I'm staying with my brother and family and playing lots with the kids (my niece and nephew). This amount of activity two months ago would have completely floored me, however, I'm holding up pretty well. I've been taking rests throughout the day and my usual flu symptoms are very minor. It's so nice to have a break from feeling completely ill and dragged down by my body. Of course I should probably be more prudent so I don't crash from this visit later, but I don't get the feeling I will.
It makes me realize I probably could have managed the month long course. At the same time, I'm not a fortune teller - I can't see the future. I made the best decision I could based on how ill I was three weeks or so ago. I really DO need to get some work done, though. I'm doing an abysmal job of fitting any tasks into my schedule.
Friday, July 2, 2010
Slowing down.......
It's really hard for me to slow myself down lately. I've had a couple weeks of feeling somewhat better. I seem to have only the occasional bad day here or there (usually a consequence of doing something physically active). I usually start to pick up in summer. I think it's all the vitamin D. Despite not attending the course this summer, somehow I already have a packed summer schedule.
For example, I leave this weekend to visit family in southern Ontario, then see my specialist. I'm really really looking forward to both. I stay with my Aunt when I'm down south which is a fairly good set up. It's quiet at her house most of the day so I can rest when needed. My parents live just down the street.
I'm in serious need of a visit to my specialist after a really rough winter/spring including some new symptoms this year. She's overworked and I have the last appointment of the day so I expect it might not be too productive an appointment. I'm trying not to get my hopes too high. I have a list of things to discuss with her (she likes to deal with only one issue an appointment which is hard when I only see her once or twice a year).
I'm posting a few photos for fun. One is of my flying dog!!!
I've also added the new poll of the month for July - for anyone to vote on.
As most of you with M.E. probably know, this was a big week for XMRV retrovirus research and buzz. I found the situation really depressing. The study (done by the FDA and NIH) that found a M.E./CFS link to the retrovirus and was reportedly already peer reviewed and accepted for publication got suppressed for the time being. Meanwhile the negative useless study done by the CDC (that didn't even use people with true M.E./CFS) was published.
See a description of the events here:
http://www.nature.com/news/2010/100702/full/news.2010.332.html?s=news_rss
See the assessment (somewhat and appropriately scathing) of the CDC study by a CFS researcher and patient advocate here:
http://www.cfids.org/xmrv/070110study.asp
I can't help but think that as a patient community, we are karmically jinxed....I'm trying not to feel too depressed about the whole situation by distracting myself with life (reading I need to do, packing, small garden chores).
I may not post too much in the next few weeks.
Saturday, June 26, 2010
a goal: wilderness camping
As those who follow my blog know, I used to be a wilderness guide. I really miss getting out in the woods. So I've had this goal the last few years to go wilderness camping. Last summer friends and I had a trip planned to some remote Islands in Lake Superior. My role was going to be to hang out at the campsite - and hopefully do some art and nature observation. After my course last summer my dog died and between the two events I didn't have it in me to make the trip.
I've accepted that I may be sick for the rest of my life. I do still have hope for treatment or recovery, but at the same time, I realize it may not happen. So I've been thinking more and more about how to do some of the things I love despite the illness. If I wait until I get better, they may never happen. Wilderness camping is one example. I need to find a very low energy way to do it, minimizing the logistics, and choosing a site that involves no travel (e.g. I don't need to paddle all day to get to it).
Since I'm not doing the PhD course this summer (postponed until next summer) I thought I might try to plan for a wilderness trip in August. Of course everything is tentative with M.E., but it's there in the back of my mind to do it. I'll keep you updated.
I've accepted that I may be sick for the rest of my life. I do still have hope for treatment or recovery, but at the same time, I realize it may not happen. So I've been thinking more and more about how to do some of the things I love despite the illness. If I wait until I get better, they may never happen. Wilderness camping is one example. I need to find a very low energy way to do it, minimizing the logistics, and choosing a site that involves no travel (e.g. I don't need to paddle all day to get to it).
Since I'm not doing the PhD course this summer (postponed until next summer) I thought I might try to plan for a wilderness trip in August. Of course everything is tentative with M.E., but it's there in the back of my mind to do it. I'll keep you updated.
Tuesday, June 22, 2010
rallying
M.E./cfs is a very frustrating illness and for me, a lot of frustration comes from not being able to exercise. As someone who was previously quite active, it's really difficult to keep myself from exercising.
For example, I try to walk everyday, even if it's only a 1/4 block. But if I've walked a 1/4 block and don't feel terrible I start thinking "maybe I'll walk a 1/2 block, or a whole block, or three blocks". And maybe I do walk a whole block. But very unique to this illness is something called post exertional malaise...which means that the consequences of walking that extra block might not hit for up to 48 hours later!!!! So, I could think while walking the block that I got away with it and it was good for me - then 48 hours later I get hit with what feels like the flu (influenza, not stomach flu)- a slew of immune symptoms, fatigue, and weakness. Adding to the frustration is that fact that sometimes I DO get away with it, and sometimes I don't, so I can never be sure when it's OK to push it.
So what does the title of this blog post have to do with exercising? Well, I sometimes do what I call "rallying". Lets say, for instance, that I'm laying in bed feeling awful, but I have the chance to go out for coffee, or breakfast, or I need to work on school-stuff. Sometimes I rally and make myself do it despite feeling ill. And sometimes rallying works and I'm glad I pushed through the sick feeling, but sometimes it leads to an even worse crash and me laying in bed later wishing that I'd never heard the word "rally".
The last two days when I've taken my walk I've started out feeling OK. Then, as soon as I've walked a bit, the feeling of being a heart patient sets in. It's like I can't get enough oxygen. Don't get me wrong, I can breath OK, it's just that I start to get waves of the fluyness, weakness, and fatigue like my body has no fuel. It's like what I've heard described by people with heart conditions or anemia. On the positive side, when I feel like this I don't push myself hard. I just take a short gentle walk. I figure even if it's just a little movement, that it's important. I don't want my body to completely succumb to deconditioning through laying around all day. Even simple movement can help with lymph flow, blood flow, and muscle atrophy.
For example, I try to walk everyday, even if it's only a 1/4 block. But if I've walked a 1/4 block and don't feel terrible I start thinking "maybe I'll walk a 1/2 block, or a whole block, or three blocks". And maybe I do walk a whole block. But very unique to this illness is something called post exertional malaise...which means that the consequences of walking that extra block might not hit for up to 48 hours later!!!! So, I could think while walking the block that I got away with it and it was good for me - then 48 hours later I get hit with what feels like the flu (influenza, not stomach flu)- a slew of immune symptoms, fatigue, and weakness. Adding to the frustration is that fact that sometimes I DO get away with it, and sometimes I don't, so I can never be sure when it's OK to push it.
So what does the title of this blog post have to do with exercising? Well, I sometimes do what I call "rallying". Lets say, for instance, that I'm laying in bed feeling awful, but I have the chance to go out for coffee, or breakfast, or I need to work on school-stuff. Sometimes I rally and make myself do it despite feeling ill. And sometimes rallying works and I'm glad I pushed through the sick feeling, but sometimes it leads to an even worse crash and me laying in bed later wishing that I'd never heard the word "rally".
The last two days when I've taken my walk I've started out feeling OK. Then, as soon as I've walked a bit, the feeling of being a heart patient sets in. It's like I can't get enough oxygen. Don't get me wrong, I can breath OK, it's just that I start to get waves of the fluyness, weakness, and fatigue like my body has no fuel. It's like what I've heard described by people with heart conditions or anemia. On the positive side, when I feel like this I don't push myself hard. I just take a short gentle walk. I figure even if it's just a little movement, that it's important. I don't want my body to completely succumb to deconditioning through laying around all day. Even simple movement can help with lymph flow, blood flow, and muscle atrophy.
Wednesday, June 16, 2010
Decision Time
I just realized that I began this blog prior to starting a PhD program one year ago. After a year of successfully completing every element of the program to date (albeit with accommodations in two out of three of my classes), I've decided to take a medical leave of absence this summer.
After a week of attempting a work schedule including two hours work a day at home (reading, writing, editing) and an outing of 1/2hr-3hrs at least every other day I decided I wasn't up for the one month course in July. After five days of this amount of activity I was crashed in bed feeling terrible. I realized that while I may have succeeded to make it through the one month course, I would have been pushing myself to the limit - enduring a lot of days of feeling like viral fatigue hell. I decided after a long winter/spring of feeling awful, that I don't want to put myself intentionally through another season of it. Perhaps me and my body deserve to rest up and feel good some of the time this summer.
Also, I teach a class (4hrs of teaching a week) in the fall which I LOVE. If I push all summer there is a chance of relapse which would entail having to opt out on the fall teaching.
So, I'm still going to work on stuff this summer (attempt to write a literature review), visit family and friends, garden and lay in bed or out in my lounge chair in the backyard.
Being someone who likes to "achieve", I'm trying NOT to feel bad about my decision. Sometimes I need to accept that I'm ill and give myself a break - literally and metaphorically.
After a week of attempting a work schedule including two hours work a day at home (reading, writing, editing) and an outing of 1/2hr-3hrs at least every other day I decided I wasn't up for the one month course in July. After five days of this amount of activity I was crashed in bed feeling terrible. I realized that while I may have succeeded to make it through the one month course, I would have been pushing myself to the limit - enduring a lot of days of feeling like viral fatigue hell. I decided after a long winter/spring of feeling awful, that I don't want to put myself intentionally through another season of it. Perhaps me and my body deserve to rest up and feel good some of the time this summer.
Also, I teach a class (4hrs of teaching a week) in the fall which I LOVE. If I push all summer there is a chance of relapse which would entail having to opt out on the fall teaching.
So, I'm still going to work on stuff this summer (attempt to write a literature review), visit family and friends, garden and lay in bed or out in my lounge chair in the backyard.
Being someone who likes to "achieve", I'm trying NOT to feel bad about my decision. Sometimes I need to accept that I'm ill and give myself a break - literally and metaphorically.
Monday, June 7, 2010
Teagan at the beach
I just thought this photo was so fun. It's my dog Teagan at the beach. We celebrated my birthday while my folks were visiting. I made everyone go to the beach for a picnic. I spend so much time home-bound I just wanted to be out near the water. So we went to Mission Marsh which is in town here....but it's lovely. We ate yummy food, cake (wheat-free but importantly chocolate), visited, flew a kite. It was a fairly short (3 hour) outing, but well worth it.After my parents left I got a cold. Not a bad one, but enough that on my actual birthday I wasn't up to going out. Today's the first day I've felt better from the cold but now the M.E. is back with a vengeance. Fever, fatigue and weakness, painful lymphs, chest ache - same old.
I'm still putting off making a decision about the month long course I'm supposed to do this July. By next Monday I think I'll just decide because the need to buy plane tickets, find summer housing etc. is becoming more pressing. Today my decision is to take medical leave and put it off until next summer. For the last 5 days however, I've tended more towards giving it a go.
I'm starting back with the activity logs my specialist had me keeping for years. I log everything I'm doing including scheduled rests to get an idea of what I'm managing and what is causing me to crash. I'm trying to work at home 2hrs a day. If this seems at my limit or more, then I probably shouldn't go (the course entails more than this even with accommodations - probably in the range of 3 hours class and 3 hours work/reading a day).
My new GP recently ran a slew of tests looking for anything "missed" in the past. As per usual, most tests came back normal. I don't have an autoimmune disease, for example. The only irregularities were a mildly low white blood count (very common for me since the M.E.) and low iron (also an ongoing saga). I can't help but get my hopes up sometime that they might find another answer to why I'm so ill. I'm trying not to hang my hopes on XMRV but boy it would be nice to find out what's made me sick for almost 8 years.
No, I'm not a hypochondriac because I'd like a "positive" blood test and no, I don't really want an incurable retrovirus or an autoimmune disease.....but I would love to know what's making me so sick. And when tests come back normal sometimes it feels like the tests are saying "liar! You're not really sick". I understand that, as my GP and specialist both say, "they just haven't figured this illness out yet". But that doesn't make it any easier to go for years being sick and not really knowing why or having any significant treatment options.
No, I'm not a hypochondriac because I'd like a "positive" blood test and no, I don't really want an incurable retrovirus or an autoimmune disease.....but I would love to know what's making me so sick. And when tests come back normal sometimes it feels like the tests are saying "liar! You're not really sick". I understand that, as my GP and specialist both say, "they just haven't figured this illness out yet". But that doesn't make it any easier to go for years being sick and not really knowing why or having any significant treatment options.
Wednesday, June 2, 2010
some photos
The poll of the month is up, and I'm posting some recent photos. May was just and incredible month weather-wise.Sunday, May 30, 2010
updates
Spending time with my parents (who've been visiting) has taken most my energy lately. However, it's been really nice to see them. I feel like I'm pulling out of the most recent relapse/crash, which is great. This winter/spring seems to have been a fairly significant relapse followed by several smaller crashes/relapses. We'll see if this good spell lasts through the week as I have quite a bit to do school/work wise.
This spring during the relapse I often felt just too unwell to work on school stuff. Then through lack of working on stuff I just lost momentum and motivation altogether. I hope if I'm feeling a bit better I can get back into the swing of things again. In the past I've been able to put in one to three solid hours of work at home a day.
I also have a big decision looming (whether or not to try to do the one month course in S. Ontario this summer).
I'll post again within the week for the poll of the month and some recent photos.
p.s. If any of you who have M.E./CFS are interested in a quiet, friendly, low-key forum, you might want to check out Bluebutterflies. http://cfsandfmshelp.proboards.com/index.cgi?action=recent
I've been part of this forum for a couple years and it's great. I like that there aren't 100 posts a day to keep up with. We would welcome a few new members.
This spring during the relapse I often felt just too unwell to work on school stuff. Then through lack of working on stuff I just lost momentum and motivation altogether. I hope if I'm feeling a bit better I can get back into the swing of things again. In the past I've been able to put in one to three solid hours of work at home a day.
I also have a big decision looming (whether or not to try to do the one month course in S. Ontario this summer).
I'll post again within the week for the poll of the month and some recent photos.
p.s. If any of you who have M.E./CFS are interested in a quiet, friendly, low-key forum, you might want to check out Bluebutterflies. http://cfsandfmshelp.proboards.com/index.cgi?action=recent
I've been part of this forum for a couple years and it's great. I like that there aren't 100 posts a day to keep up with. We would welcome a few new members.
Wednesday, May 26, 2010
Lack of Blogging
Sorry for my recent hiatus. First I had another couple REALLY bad weeks and just didn't have it in me, and now my parents are visiting from the south. The last two days have been pretty decent. I seem to be rebounding. I hope it lasts.....maybe I can do the course I'm supposed to do this summer after all.
Wednesday, May 12, 2010
M.E./CFS Awareness Day
Since most of those who read this blog already know all too intimately about M.E./CFS, I won't create a long post today.
However, if you would like to read some facts about the illness, Laurel did an excellent job on her blog of putting together a succinct educational post: http://dreamsatstake.blogspot.com/2010/05/may-12th-mecfs-awareness-day.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+DreamsAtStake+%28Dreams+At+Stake%29
Also, the Myalgic Encephalomyelitis (M.E.) association of Ontario put out the following facts sheet which is OK....I don't necessarily like M.E. being clumped with FM as they are different illnesses (and I have M.E. only). However, I think they did it just for the statistics section.
http://www.meao-cfs.on.ca/files/ME-FactSheet.pdf
Here's what I have to say about the illness:
1. If there is one piece of education I'd like to share today, it is this: M.E. is NOT "chronic fatigue"....Being chronically tired in the way a healthy, but sleep deprived or overworked person gets, is nothing like the neurological, muscular fatigue and weakness associated with M.E. Fatigue is only ONE symptom of a multi-system illness.
2. Also, people with M.E. are not laking in motivation. They are seriously ill. If you read any of the above facts sheets (links) you will see that most NEVER return to complete health and the majority are unable to work full-time. Will power and gumption are not solutions for M.E. sufferers, in fact, they can be our worst enemies because with this illness if you push, you get sicker....and sicker...
SO what you can do is:
-take M.E. seriously (like you would any better known illness or disease)
-try to be supportive and empathetic of those who suffer from it
-advocate for M.E. sufferers by spreading the word about the seriousness of the illness and contradicting those who think it's about being tired, depressed, or lazy - patients have been stigmatized and marginalized for too long!
-advocate for better research and funding
-don't call M.E./CFS "chronic fatigue". If you can't say Myalgic Encephalomyelitis, call it "M.E." or M.E./CFS.
Sunday, May 2, 2010
Help vs. Independence
I was just thinking how sometimes it's really nice to have help. But how it's a mixed blessing.
For example, I'm putting in two little native plants gardens out front. Now to say I'm doing it is a real stretch. For one, I'm not digging the beds. I may or may not be able to help get the plants....The only parts I can do are make garden plans, sit in the grass and plant stuff...and in my good moments I am able to weed a little too.
Today my friends/roommates spent a few hours working hard digging out one of the beds. It's really hard not to join in. I took some weeds out of the roses then I sat on the porch and watched them work hard for a while-even watching was tiring. I felt a mix of excitement and appreciation along with feeling bad that someone else was doing all the work so that I can have a garden. Partly, it's that I want to join in....but I know it will make me sick and I'll pay for it later; also, while they probably don't mind doing stuff for me, I don't always enjoy "being done for". In exchange for accepting help I lose a sense of independence and feelings of self-worth.
On the other hand, in the big scheme of things, if no one ever accepted help, no one would ever get to help people (which can feel really good).
I've had a fever most the weekend and my throat is quite swollen. The flu ache/chest ache is there too, but the fatigue is only moderate. I mean M.E./cfs moderate....not moderate for someone who's "well". If a "normal" stepped into my body for the day they would experience the worst weakness of their lives I would expect.
Joe and I also collected some rocks later this afternoon for the border of the garden. While I kept myself from carrying any big ones or walking very far, I expect I'll pay for it within the next 48 hours...still it was fun, and sometimes it's worth just saying "screw it" for the chance to feel even a little active.
My pole this month (on the right) will be about this topic of how hard/easy it is to accept help and assistance.
For example, I'm putting in two little native plants gardens out front. Now to say I'm doing it is a real stretch. For one, I'm not digging the beds. I may or may not be able to help get the plants....The only parts I can do are make garden plans, sit in the grass and plant stuff...and in my good moments I am able to weed a little too.
Today my friends/roommates spent a few hours working hard digging out one of the beds. It's really hard not to join in. I took some weeds out of the roses then I sat on the porch and watched them work hard for a while-even watching was tiring. I felt a mix of excitement and appreciation along with feeling bad that someone else was doing all the work so that I can have a garden. Partly, it's that I want to join in....but I know it will make me sick and I'll pay for it later; also, while they probably don't mind doing stuff for me, I don't always enjoy "being done for". In exchange for accepting help I lose a sense of independence and feelings of self-worth.
On the other hand, in the big scheme of things, if no one ever accepted help, no one would ever get to help people (which can feel really good).
I've had a fever most the weekend and my throat is quite swollen. The flu ache/chest ache is there too, but the fatigue is only moderate. I mean M.E./cfs moderate....not moderate for someone who's "well". If a "normal" stepped into my body for the day they would experience the worst weakness of their lives I would expect.
Joe and I also collected some rocks later this afternoon for the border of the garden. While I kept myself from carrying any big ones or walking very far, I expect I'll pay for it within the next 48 hours...still it was fun, and sometimes it's worth just saying "screw it" for the chance to feel even a little active.
My pole this month (on the right) will be about this topic of how hard/easy it is to accept help and assistance.
Saturday, April 24, 2010
Rough Day
We've had two beautiful warm spring days here. I've had the urge to do all kinds of things. But I've also been feeling ill and my stamina has been poor. I did too much yesterday; then today I spent some time in the yard, planting some seedlings. I'm going to have a little herb garden and I thought I'd start some of the herbs indoors and save money rather then buying plants this year. So I was sitting on the lawn planting seeds in little pots.
Just that short 1/2 hour to an hour outside and I was completely drained - it caused tremors, dizziness, and an intense feeling of having the flu. It's just so frustrating sometimes to be so motivated, yet have a body that just won't cooperate.
Then I lay in bed feeling sick and sorry for myself, it's pathetic. Maybe I need to go back to scheduling rests throughout the day. My specialist used to have me on a regiment like this and even though it didn't always improve my status, it helped avoid these awful crashes. Right now I'm resting lots, I'm just not doing any preumptive resting. On my better days I rest less....I'm not on a strict schedule like I once was.
Just that short 1/2 hour to an hour outside and I was completely drained - it caused tremors, dizziness, and an intense feeling of having the flu. It's just so frustrating sometimes to be so motivated, yet have a body that just won't cooperate.
Then I lay in bed feeling sick and sorry for myself, it's pathetic. Maybe I need to go back to scheduling rests throughout the day. My specialist used to have me on a regiment like this and even though it didn't always improve my status, it helped avoid these awful crashes. Right now I'm resting lots, I'm just not doing any preumptive resting. On my better days I rest less....I'm not on a strict schedule like I once was.
Sunday, April 18, 2010
Up and down week.
Health wise it's been an up and down week. Most afternoons spent in bed feeling really ill, and the occasional morning feeling fairly decent. Still having issues with the throat. Blisters on my tonsils and the back of my throat again this week but at least I haven't had many fevers. I've had tremors in my legs on and off this week too. I haven't had this symptom in ages. It's one of the most annoying, disturbing symptoms for me.
On Thursday we went for a few hours out to the Sleeping Giant - one of the most beautiful places I've ever been to (and considering the natural places I've been, that's saying something).
I'm going to post a few photos.
Saturday, April 10, 2010
10 things about me....
My blogging buddy Treya
http://jen-mecfs.blogspot.com/2010/03/10-things-about-me.html
tagged me to write a list of 10 things about me.
For some reason I'm finding this difficult. Perhaps because I don't really do a lot. I guess one thing about me is I'm an expert at laying around all day doing nothing (hee hee)...But I'll give it my best shot:
1. My favourite foods are corn on the cob (fresh), avocado, berries, peanut butter and chocolate.
2. While I had some brain fog when I first got ill and constant pressure headaches, those went away after the first three or four years. Cognitively I am not a typical M.E./cfs patient so I can read. I read LOTS. Between reading for school (the PhD) and fiction I probably spend about 3-5 hours a day reading. I love nothing more than a good novel - the kind of novel that takes me into the life of some other person, a novel where I'm immersed in new perspectives, a novel where I think, cry, and laugh.
3. I took 11 years of classical piano lessons (which doesn't mean I can play well).
4. I spent 5 falls as a dog-trainer, training sled dogs (both my own dogs and dogs for an organization that offered dog sledding trips).
5. My favourite time of day is in the morning when I don't feel as sick, and when the potential of the day is still unleashed. (Also, I LOVE coffee, and I let myself drink two mugs full each morning).
6. A few of my biggest hopes/dreams/goals are: to get better, make my own living thus ending my reliance on government disability, and to adopt a child.
7. The first thing I would do if I were well is go for a long run in the woods with my dog Teagan.
8. I've lived in three countries (Canada, England and the U.S.A.).
9. I love winter - snow, ice....everything seems so fresh, there's something special about winter skies - lots of purples and greys, and the light in the winter is unique (long shadows etc.). Also, I have so many good memories of being out in wilderness areas in the winter.
10. I'm doing my PhD research on wolf conservation and education....details to follow (eventually).
p.s. feel free to vote on this month's poll - I'm curious what brings meaning to your life.
http://jen-mecfs.blogspot.com/2010/03/10-things-about-me.html
tagged me to write a list of 10 things about me.
For some reason I'm finding this difficult. Perhaps because I don't really do a lot. I guess one thing about me is I'm an expert at laying around all day doing nothing (hee hee)...But I'll give it my best shot:
1. My favourite foods are corn on the cob (fresh), avocado, berries, peanut butter and chocolate.
2. While I had some brain fog when I first got ill and constant pressure headaches, those went away after the first three or four years. Cognitively I am not a typical M.E./cfs patient so I can read. I read LOTS. Between reading for school (the PhD) and fiction I probably spend about 3-5 hours a day reading. I love nothing more than a good novel - the kind of novel that takes me into the life of some other person, a novel where I'm immersed in new perspectives, a novel where I think, cry, and laugh.
3. I took 11 years of classical piano lessons (which doesn't mean I can play well).
4. I spent 5 falls as a dog-trainer, training sled dogs (both my own dogs and dogs for an organization that offered dog sledding trips).
5. My favourite time of day is in the morning when I don't feel as sick, and when the potential of the day is still unleashed. (Also, I LOVE coffee, and I let myself drink two mugs full each morning).
6. A few of my biggest hopes/dreams/goals are: to get better, make my own living thus ending my reliance on government disability, and to adopt a child.
7. The first thing I would do if I were well is go for a long run in the woods with my dog Teagan.
8. I've lived in three countries (Canada, England and the U.S.A.).
9. I love winter - snow, ice....everything seems so fresh, there's something special about winter skies - lots of purples and greys, and the light in the winter is unique (long shadows etc.). Also, I have so many good memories of being out in wilderness areas in the winter.
10. I'm doing my PhD research on wolf conservation and education....details to follow (eventually).
p.s. feel free to vote on this month's poll - I'm curious what brings meaning to your life.
Monday, April 5, 2010
Decent Weekend
I had a decent Easter weekend.
My good friend's birthday (celebrated at home, but I did bake a cake), then a small house-warming party, followed by Easter celebrated at home.
Thank goodness the relapse is over....I'm back to my normal which is a low level of feeling ill/fluey or malaise and a moderate level of fatigue - especially post-exertional fatigue. So if I'm careful, I can do some low-key things without feeling terrible or making my situation worse. THIS is such a CHANGE from the 6 1/2 week relapse where I was suffering from what felt like a fairly severe virus/immune problem every moment of every day!!!
I'm so thankful to feel a bit of a person again instead of just a sick body (draining me dry of mental, physical and emotional energy).
I'm hoping that's it for relapses this year....the occasional crash day here or there is to be expected.
My good friend's birthday (celebrated at home, but I did bake a cake), then a small house-warming party, followed by Easter celebrated at home.
Thank goodness the relapse is over....I'm back to my normal which is a low level of feeling ill/fluey or malaise and a moderate level of fatigue - especially post-exertional fatigue. So if I'm careful, I can do some low-key things without feeling terrible or making my situation worse. THIS is such a CHANGE from the 6 1/2 week relapse where I was suffering from what felt like a fairly severe virus/immune problem every moment of every day!!!
I'm so thankful to feel a bit of a person again instead of just a sick body (draining me dry of mental, physical and emotional energy).
I'm hoping that's it for relapses this year....the occasional crash day here or there is to be expected.
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