Well I'm still crashed. Yesterday I was feeling a bit better. Because I was feeling a bit better, I went the the market for 1/2 hour in the morning. Then in the evening, I took Teagan to the dog park. It was obviously too much as I feel really bad again today....which sucks because the sun is shining for a change and I'm feeling antsy to get out and enjoy it...But I feel so so fluey I know it's not a good idea.....I'll have to settle for some time sitting in the back yard.
It's hard being chronically ill and living alone. But there are both pros and cons.
For example, there are times, when I'm feeling really sick, that living alone is probably a good thing. Talking to people and socializing takes energy. Living alone allows me to rest, nap and sleep when I need to. It's always quiet. Also, I find when I'm feeling really ill and there are people around I have a short temper. It's hard to deal with people when I'm feeling awful.
On the other hand, for the last 4+ years of this illness I've lived alone in a city where I don't have too many friends (It's hard to make and keep friends when you really can't do too much). So when I'm house-bound sometimes I can go a week or more without talking to a single person face-to-face. It can be quite isolating.
Tomorrow, two of my good friends are moving to Thunder Bay. We're going to rent a house together. I'm looking forward to it for several reasons. For one, it will be nice simply to have friends in town that I know well. Second, when I'm quite ill it will help to have someone around who is able to grocery shop, shovel the driveway, etc. And finally, when I'm house-bound, I'm looking forward to having company - even if it's just talking to someone face-to-face once a day.
Sunday, August 30, 2009
Friday, August 28, 2009
Crashed
I'm crashed. Day three. Not sure what caused it either. My parents left Sunday....I guess I did a bit too much Monday - but not enough to cause a three day crash. Perhaps it's a cumulative effect of my busy summer....I sure hope not.
Right now:
- Sore throat
- Major dizzy spells (came very close to passing out this morning as well as in the library yesterday - whoops)
- muscle twitches
- painful lymph nodes - arms
- very deep seated chest ache (hurts to breathe)
- muscle weakness - I've started using the stool in the kitchen again
- fatigue - I brought a handful of clothes downstairs yesterday and felt like I'd run a marathon or worse
I'm laying in my downstairs bed listening to the rain. I just finished a book and a bowl of popcorn. Sometimes I can't believe this is my life - being sick, laying in bed, reading, resting......
Wednesday, August 26, 2009
Sick Day
I've been feeling pretty decent this week. Decent is relative, of course. But I guess I've been feeling only minorly ill for a change. My energy has also been pretty decent. Yesterday I think I did too much - a coffee date, a short meeting AND going to the dog park in the p.m....around a total of three hours out of the house.
Today I'm remembering that I can't act like a "well" person. I feel sick today. I woke up with a headache and my throat is sorer than normal. Plus I feel the old chest flu-ache which I can't seem to put into words. No, it's not a muscular or joint thing....it's a sick achy feeling in my chest. Like with an infection (but w/o any coughing or flem or anything)...
I have a good book, but even though I'm sick and feel best if I'm laying down, I get tired of laying in bed all day reading or watching TV. But if I do something more active I feel sicker. Oh well. Having been as sick as I have over the last 7 years, everything is relative. What I mean is that I KNOW it (has) and could be a lot worse. So I must be zen, patient and take care of myself until I feel a bit better again. (And perhaps not walk too far with the dog today).
I thought I'd post a few photos of Teagan that my friend Nancy took.....they're pretty cute:
Today I'm remembering that I can't act like a "well" person. I feel sick today. I woke up with a headache and my throat is sorer than normal. Plus I feel the old chest flu-ache which I can't seem to put into words. No, it's not a muscular or joint thing....it's a sick achy feeling in my chest. Like with an infection (but w/o any coughing or flem or anything)...
I have a good book, but even though I'm sick and feel best if I'm laying down, I get tired of laying in bed all day reading or watching TV. But if I do something more active I feel sicker. Oh well. Having been as sick as I have over the last 7 years, everything is relative. What I mean is that I KNOW it (has) and could be a lot worse. So I must be zen, patient and take care of myself until I feel a bit better again. (And perhaps not walk too far with the dog today).
I thought I'd post a few photos of Teagan that my friend Nancy took.....they're pretty cute:
Monday, August 24, 2009
H2S TEST
I ordered the H2S TEST
I just ordered a home H2S test. One researcher (Dr. Kenny DeMeirleir) recently came out with the test. It's not a diagnostic test yet....at this point it's meant for research purposes. It shows the level of hydrogen sulfide in the urine. Supposedly, 80 - 90% of those with CFS/ME come out positive for increased levels. Dr. Meirleir believes it's due to increased levels of bacteria in the intestines. This causes the food in the gut to ferment, creating the high levels of hydrogen sulfide. I hope its not just someone hoping to make money off us sickies. Still, I ordered it on a whim because it would be nice to see whether I come out positive. While I highly doubt that hydrogen sulfide is the cause of my illness, maybe it is a side effect that can be measured....I'll let you know.
I just ordered a home H2S test. One researcher (Dr. Kenny DeMeirleir) recently came out with the test. It's not a diagnostic test yet....at this point it's meant for research purposes. It shows the level of hydrogen sulfide in the urine. Supposedly, 80 - 90% of those with CFS/ME come out positive for increased levels. Dr. Meirleir believes it's due to increased levels of bacteria in the intestines. This causes the food in the gut to ferment, creating the high levels of hydrogen sulfide. I hope its not just someone hoping to make money off us sickies. Still, I ordered it on a whim because it would be nice to see whether I come out positive. While I highly doubt that hydrogen sulfide is the cause of my illness, maybe it is a side effect that can be measured....I'll let you know.
Seasonal Fluctuations
My parents flew home yesterday and so I have my little house to myself again. The PhD summer course is completely finished (I handed in my paper last week). I now have a week before things get busy again. (Except if I'm sticking with the PhD program, I need to confirm a research topic and write some grant applications - it's expected that we do this).
I'm looking forward to this week to rest up, read, go for little walks, play with the dog.
Health wise, I'm feeling stronger. I think I can say I've fully recovered from the July PhD course. Which doesn't mean I'm a healthy person, it just means I'm back to my normal...
Every fall (starting in late summer) I start to feel better, stronger. It's been true almost since the beginning of the illness. It sometimes even lasts into January. Typically, Sept -Nov. are my best months every year. Late winter and early spring are usually my worst months, although I can have bad months in early and mid-summer too.
Weird, I know. I've tried to figure it out. It can't be a temperature thing because it's really cold and dark here in Nov. and Dec. It's not related to flu season because that's usually over by May and I can still have bad months in May and June. For a while I was trying to find an allergy trigger but I don't think that's it either.....
I'm looking forward to this week to rest up, read, go for little walks, play with the dog.
Health wise, I'm feeling stronger. I think I can say I've fully recovered from the July PhD course. Which doesn't mean I'm a healthy person, it just means I'm back to my normal...
Every fall (starting in late summer) I start to feel better, stronger. It's been true almost since the beginning of the illness. It sometimes even lasts into January. Typically, Sept -Nov. are my best months every year. Late winter and early spring are usually my worst months, although I can have bad months in early and mid-summer too.
Weird, I know. I've tried to figure it out. It can't be a temperature thing because it's really cold and dark here in Nov. and Dec. It's not related to flu season because that's usually over by May and I can still have bad months in May and June. For a while I was trying to find an allergy trigger but I don't think that's it either.....
Recently, it came to me that maybe it has to do with vitamin D. For example, by late winter, I probably don't have much vit. D in my system....then over the summer as I build it up again, I start to feel better. Perhaps it remains in my system until early winter??? It's a total shot in the dark, but like a lot of people with this illness I'm always trying to figure out what triggers crashes and relapses and for me, seasonal fluctuations. This theory seem to fit better than other ones I've had.
Don't get me wrong, I don't think that lack of vit. D could be a CAUSE of this illness, but perhaps an influence on my seasonal fluctuations.
Anyways, seeing as it's late summer, I'm hoping for my usual upward trend to continue. However, I've pushed myself harder this summer than any summer since 2003 (when I tried to work full time), so I hope that doesn't affect the trend.
Anyways, seeing as it's late summer, I'm hoping for my usual upward trend to continue. However, I've pushed myself harder this summer than any summer since 2003 (when I tried to work full time), so I hope that doesn't affect the trend.
Tuesday, August 18, 2009
Dr. appointments
I've tried as much as possible to avoid going to the Dr. with this illness. If it's something related to the M.E./CFS, I know they are going to say there is nothing we can do about it...so what's the point really? If it's a viral symptom or a dizziness symptom, the only thing I can do is wait it out.
However, I had an anual physical scheduled for today with my NP (Nurse Practitioner) and my new GP wanted to see me again in September. Then at the end of October, I fly south to see my ME/CFS specialist. That's ALOT of Dr. appointments for me!! I'm looking forward to seeing my specialist, but NOT to the travel. Otherwise, I usually find appointments a let down. Even if I'm feeling really sick, it often doesn't show in my blood work and I've never been given a suggestion or drug by a regular doctor that's made any difference in this illness. (My specialist, on the other hand, has helped me both deal with the social and emotional aspects of the illness as well as helped me figure out how to pace and avoid relapses).
I had a big fat swollen lymph node on my neck last week. My NP today could still feel it, but it's gone down some. She said it was probably infection/viral related as per usual. There was also a mildly swollen one in my left armpit (which has been sore today). The only other thing was that my throat is red and sore (she noticed redness on both sides with no swollen lymph nodes). My blood pressure was low 98/70 which explains my dizziness. I have OI (Orthostatic Intolerance) but it only affects me when I'm in a crash.
The best part about seeing my NP, though, is that her sister has M.E./CFS. It makes her very sympathetic and supportive towards me. Although probably inappropriately, she sometimes gives me updates on her sister and shares similarities between us.
Anyways, I've been busy finishing a paper and my folks have been visiting. While I've been feeling quite fluey the last week, my energy has returned closer to my "normal" which means I can do some visiting and even go out once a day.
However, I had an anual physical scheduled for today with my NP (Nurse Practitioner) and my new GP wanted to see me again in September. Then at the end of October, I fly south to see my ME/CFS specialist. That's ALOT of Dr. appointments for me!! I'm looking forward to seeing my specialist, but NOT to the travel. Otherwise, I usually find appointments a let down. Even if I'm feeling really sick, it often doesn't show in my blood work and I've never been given a suggestion or drug by a regular doctor that's made any difference in this illness. (My specialist, on the other hand, has helped me both deal with the social and emotional aspects of the illness as well as helped me figure out how to pace and avoid relapses).
I had a big fat swollen lymph node on my neck last week. My NP today could still feel it, but it's gone down some. She said it was probably infection/viral related as per usual. There was also a mildly swollen one in my left armpit (which has been sore today). The only other thing was that my throat is red and sore (she noticed redness on both sides with no swollen lymph nodes). My blood pressure was low 98/70 which explains my dizziness. I have OI (Orthostatic Intolerance) but it only affects me when I'm in a crash.
The best part about seeing my NP, though, is that her sister has M.E./CFS. It makes her very sympathetic and supportive towards me. Although probably inappropriately, she sometimes gives me updates on her sister and shares similarities between us.
Anyways, I've been busy finishing a paper and my folks have been visiting. While I've been feeling quite fluey the last week, my energy has returned closer to my "normal" which means I can do some visiting and even go out once a day.
Friday, August 14, 2009
lymph nodes
I don't really know how many people with CFS/ME suffer from lymph node pain and swelling? I think it was one of the original U.S. diagnostic criteria, however, I'm not really sure if it still is. I was diagnosed in the States, then moved back to Canada where I was diagnosed using the Canadian Clinical criteria put together by an international panel of ME/CFS specialists (including my specialist). I think the Canadian diagnostic criteria are much better, and it's been shown that the Canadian criteria select a narrower, sicker population than the U.S. one. With the Canadian criteria, lymph node pain or swelling just comes under the general category of immune manifestations.
Anyways, almost from the start I've had significant pain in my axillary lymph nodes - that is, the ones in my arm pits. I had no idea there were even lymph nodes there prior to getting ill. Sometimes they've been so painful I've had to prop pillows under my arms at night in order to sleep (because when my arms are down and touching, they hurt more). I've also had lots and lots of sore throats, sometime lasting years at a time. The nodes in my throat are sometimes mildly swollen, but the ones in my armpits have mostly been painful and not swollen.
Last night I was watching TV and I reached up (to itch my neck) and found a little grape sized swollen lymph node on the side of my neck....it doesn't hurt, but I'm guessing it's related to the M.E./CFS. I'm seeing my Nurse Practitioner next week so if it's still swollen, I'll see what she thinks.
Otherwise, my energy seems to be getting back to where it was prior to the PhD course which is very encouraging!
Anyways, almost from the start I've had significant pain in my axillary lymph nodes - that is, the ones in my arm pits. I had no idea there were even lymph nodes there prior to getting ill. Sometimes they've been so painful I've had to prop pillows under my arms at night in order to sleep (because when my arms are down and touching, they hurt more). I've also had lots and lots of sore throats, sometime lasting years at a time. The nodes in my throat are sometimes mildly swollen, but the ones in my armpits have mostly been painful and not swollen.
Last night I was watching TV and I reached up (to itch my neck) and found a little grape sized swollen lymph node on the side of my neck....it doesn't hurt, but I'm guessing it's related to the M.E./CFS. I'm seeing my Nurse Practitioner next week so if it's still swollen, I'll see what she thinks.
Otherwise, my energy seems to be getting back to where it was prior to the PhD course which is very encouraging!
Wednesday, August 12, 2009
Resting....
So I haven't yet recovered from the July PhD course, but I'm improving. I'm still crashed in the afternoons with little energy, and the chest/breathing ache. My armpit lymph nodes haven't been as sore but my throat is very sore and a bit swollen.
Still, I'm hopeful that I'll be back to my normal by September when I start teaching (2 hours a week). I'll also be taking an online course. I'm pretty sure this is doable if I'm back to my "normal". Not that I really have a normal with the cycles and ups and downs, but when I'm conscientious about resting and pacing I can usually maintain a level where I feel somewhat decent. When I'm at that level I can be out of the house 1-2 hours a day if I'm doing something low-key (e.g. sitting in a coffee shop).
Right now my parents are visiting which is nice, but does take a bit of extra energy. However, I'm resting lots....
I've tried many supplements, vitamins, diets and even a couple drugs over the seven years I've been ill and nothing has really seemed to make any difference. The exception is just plain old rest. If my throat hurts a lot, or I'm having a crash or even if I have a fever, the only way I seem to be able to feel better is by resting....and resting....and resting.
Still, I'm hopeful that I'll be back to my normal by September when I start teaching (2 hours a week). I'll also be taking an online course. I'm pretty sure this is doable if I'm back to my "normal". Not that I really have a normal with the cycles and ups and downs, but when I'm conscientious about resting and pacing I can usually maintain a level where I feel somewhat decent. When I'm at that level I can be out of the house 1-2 hours a day if I'm doing something low-key (e.g. sitting in a coffee shop).
Right now my parents are visiting which is nice, but does take a bit of extra energy. However, I'm resting lots....
I've tried many supplements, vitamins, diets and even a couple drugs over the seven years I've been ill and nothing has really seemed to make any difference. The exception is just plain old rest. If my throat hurts a lot, or I'm having a crash or even if I have a fever, the only way I seem to be able to feel better is by resting....and resting....and resting.
Sunday, August 9, 2009
Home - crashed and mourning
OK, so I'm not trying to be all depressing but it's been a tough week. I'm still somewhat crashed from the PhD course, and from mourning Merlin's passing and then a friend drove me to Ely, MN where I used to live. That was good. It was good not to be alone all week, surrounded by Merlin memories (which are in every corner of this house) and crying myself silly. There were many folks in Ely who knew her as a pet or as a sled dog and so it was nice to share memories, but also just be distracted.
But any travel (even a 3 1/2 hour drive) can drain me. So I had some OK days health wise and some really crashed ones. Especially the last three days. I tend to have a window in the morning where I feel better, but the last three days the flu symptoms and fatigue have been setting in by 10:30am and lasting right through until evening where I again have a small reprieve.
Now I'm back home which is hard....but time helps....
I'm just hoping I can recover from this crash.
But any travel (even a 3 1/2 hour drive) can drain me. So I had some OK days health wise and some really crashed ones. Especially the last three days. I tend to have a window in the morning where I feel better, but the last three days the flu symptoms and fatigue have been setting in by 10:30am and lasting right through until evening where I again have a small reprieve.
Now I'm back home which is hard....but time helps....
I'm just hoping I can recover from this crash.
Monday, August 3, 2009
Merlin's Passing
Merlin, my constant friend, companion, and roommate for the last 11 years died on Friday. I can't imagine having gone through life (and especially this illness) without her. It's hard to think about a Merlinless future....she left a huge gaping hole.....I'll be forever grateful for the time we shared. I thought I'd put up a few photos as a tribute to her.
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