Since contracting M.E., I have suffered from three, yes three, types of dizziness. The first is vertigo, which is when things seem to be moving or spinning. This one I don't get very often, usually after a cold virus.
The second type I might not even call 'dizziness' except I can't find another word to describe it. Basically, I feel like I am looking at the world through layers of fuzz. My eyesight is affected, and it is worse when I move my head. Noise, bright lights, and anything moving, basically most stimuli aggravate it.
While visiting friends over this past weekend, I had such a bad bout of this, at one point l lost 50% vision in one of my eyes…it was similar to the aura you get before a migraine, without the headache. I am still suffering some even though I'm now home and doing very little, but with much less stimuli the feeling of 'dizziness' is muted.
The third type is lightheadedness. It is clearly (and has been diagnosed as) orthostatic intolerance. This is a feeling of lightheadedness when upright or standing. It can lead to blackouts (full loss of vision) and then fainting (passing out).
I mostly notice it if I'm standing for more than a moment or two, or I'm bending over then standing up, or getting up from a laying down position. I notice a swooping feeling. I have both types of OI - postural orthostatic tachycardia (POTS) which is a heart rate that increases by more than 30 beats a minute when going from incline to standing. I also have postural hypotension, meaning that my blood pressure drops when I stand up.
So a while ago I said I had some good news re: new treatment. The treatment is a drug called Florinef. It is a type of synthetic glucocorticoid (a hormone secreted by the adrenal glands) that is supposed to help with the orthostatic intolerance by regulating heart rate and blood pressure. Well after two weeks on a 1/2 dose, I noticed no change. Then, after a week on the full dose I had a very amazing improvement of symptoms.
However, seeing as the severity of OI comes and goes, I didn't want to report improvement, in case it was just a coincidental good spell. Now I'm wondering if it is helping, as I'm still getting symptoms. It does not seem to help much with the POTS, or standing tachycardia. My HR is still over 120 if I stand very long, as well, my hands continue to turn purple from blood pooling even if I'm just sitting.
I DO think it is helping with the the hypotension. While I've had a few minor swooping blackouts the last few days, I'm crashed, so it's not a huge surprise. I am having way way less blackouts over all. I can bend over and get a scoop of dog food for the dog, for example, or bend down to get something out of a lower cupboard, without a blackout and that is a definite improvement.
I'm not sure whether it's enough improvement that I'll stay on the drug? But I want to stay on it for a while, while I sort out what is the normal fluctuation of symptoms, and what is actual improvement.
Tuesday, November 25, 2014
Sunday, November 16, 2014
Thoughts on the concept of P.E.M. or crashing…
Has anyone with M.E. ever had a friend or family member "get" or understand P.E.M. (post exertional malaise) or crashing? I figure it must have happened to someone, I'd love to hear stories.
Over and over and over again I have the experience of non-M.E. sickies not getting the concept. For example, if I say I'm crashed or ill, when they reply, they say "oh you're tired?"
I have had M.E. for over 12 years, and everyone close to me in my life has been told by me innumerous times that an M.E. crash is like having the weakness and symptoms of influenza or a bad cold virus.
It's like being extremely weak and ill (sore throat, swollen glands, dizziness and even fevers sometimes). It is NOT the same as tired or worn out. Not that tired isn't an element, but it's more akin to the weakness and exhaustion of a severe virus. But I could be a broken record, and it seems it doesn't make a difference. Some folks will forever think I'm experiencing "tired", like a healthy gets, rather than "sick".
In a similar vein, it seems there is far more encouragement from people in my life to do more, not less. Imagine if every time you had an outing out of the house, or tried to do a task, 36 hrs later you endured the equivalent of influenza? I don't think if someone experienced or really listened and understood this, they would encourage me to push.
Case in point, I went through most of July, all of August all of September, and into early October, before I had a day where I didn't feel absolutely horribly ill. In part, it was the travel I did in August and early Sept. I did it, I toughed it out, I managed. Maybe that's all people see from the outside.
It was so bad in September, I was so tired and fed up with being ill, and disappointed in how little I could manage, that I wanted my life to end. I didn't want to live another single day that ill. Then around mid October, after being home over a month, I had a better day.
I mean ultimately it's up to me. If I want to down grade the suffering, I have to avoid pushing. Live like a monk, never do more than a few small tasks a day. One short outing a week, otherwise homebound. This way I can avoid the worst crashes. But it would be nice if, a little more often, I felt supported in this from the outside, felt that someone else thinks it's OK for me, or anyone who's chronically ill for that matter, to avoid crashes even if it means we're not "doing", "producing" etc.
Beleive me, it's hard enough to remind myself that I still have some worth outside of my productivity, my activity. I'm pretty sensitive about how useless I am, (or feel I am). And I've always been an active "busy' person, so NOT doing is already torture.
Let me throw in here, that there are the few odd times certain people do urge me to not push. And I find, for example, if it's my roommate/friend, that it gives me a feeling of support, as well as a reminder.
My mom, on occasion has also mentioned "Don't overdo, you know how bad it can get." At the same time, if I'm visiting them, and I spend most my time in bed, she says, "You don't like spending time with us."
Also, I have a friend reunion coming up and a couple of those friends, knowing how terrible the fall was for me, have been super understanding about me coming only if I'm well enough.
My old specialist was a huge proponent of pacing and resting. While she didn't have M.E. she was able to see over and over what happened to those who didn't learn to pace. She told me once if I didn't take better care, I might end up in a nursing home in my 30s…because she'd seen it happen.
Do your friends or family members ever encourage pacing and resting, avoiding P.E.M.? It must be hard from the outside to see someone you love just laying around all the time, cautious to ever go out and "do things". As a friend or family member, one must wonder if the person with M.E. isn't just a little lazy or overly cautious, whether it's really that bad and not in some part a "mental" issue. I mean they even look well.
Another pet peeve I have is when friends start using the word "crash" when talking to me about how "tired" they are in their own lives, once again demonstrating that they think "crash" means really tired, rather than really ill and weak. So now I try now to use P.E.M., or "I'm having an M.E. crash." I can still feel empathy for others who get downright exhausted living their lives. It's just that P.E.M. or crashing is a biological immune reaction to activity and not - really tired.
According to research thus far, M.E. is the only illness that shows biological abnormalities in metabolism, heart function, and the immune, and nervous systems 24 and 48 hours after exercise. This is not the same as being "tired". Basically when we, people with M.E. are active, 24 hours later our bodies react, releasing immune cytokines similar to those released when someone has a virus. So P.E.M. or crashing, really is like being sick.
So on a very positive note, I have some GREAT news about my health to report. However, at this point I'm going to leave this as a teaser. The treatment seems to have made a big difference (quite drastic in fact) for a week now, but I don't want to find out that the changes are some kind of fluke. So next week, if the improvement continues, I'll report on the treatment that is responsible.
Over and over and over again I have the experience of non-M.E. sickies not getting the concept. For example, if I say I'm crashed or ill, when they reply, they say "oh you're tired?"
I have had M.E. for over 12 years, and everyone close to me in my life has been told by me innumerous times that an M.E. crash is like having the weakness and symptoms of influenza or a bad cold virus.
It's like being extremely weak and ill (sore throat, swollen glands, dizziness and even fevers sometimes). It is NOT the same as tired or worn out. Not that tired isn't an element, but it's more akin to the weakness and exhaustion of a severe virus. But I could be a broken record, and it seems it doesn't make a difference. Some folks will forever think I'm experiencing "tired", like a healthy gets, rather than "sick".
In a similar vein, it seems there is far more encouragement from people in my life to do more, not less. Imagine if every time you had an outing out of the house, or tried to do a task, 36 hrs later you endured the equivalent of influenza? I don't think if someone experienced or really listened and understood this, they would encourage me to push.
Case in point, I went through most of July, all of August all of September, and into early October, before I had a day where I didn't feel absolutely horribly ill. In part, it was the travel I did in August and early Sept. I did it, I toughed it out, I managed. Maybe that's all people see from the outside.
It was so bad in September, I was so tired and fed up with being ill, and disappointed in how little I could manage, that I wanted my life to end. I didn't want to live another single day that ill. Then around mid October, after being home over a month, I had a better day.
I mean ultimately it's up to me. If I want to down grade the suffering, I have to avoid pushing. Live like a monk, never do more than a few small tasks a day. One short outing a week, otherwise homebound. This way I can avoid the worst crashes. But it would be nice if, a little more often, I felt supported in this from the outside, felt that someone else thinks it's OK for me, or anyone who's chronically ill for that matter, to avoid crashes even if it means we're not "doing", "producing" etc.
Beleive me, it's hard enough to remind myself that I still have some worth outside of my productivity, my activity. I'm pretty sensitive about how useless I am, (or feel I am). And I've always been an active "busy' person, so NOT doing is already torture.
Let me throw in here, that there are the few odd times certain people do urge me to not push. And I find, for example, if it's my roommate/friend, that it gives me a feeling of support, as well as a reminder.
My mom, on occasion has also mentioned "Don't overdo, you know how bad it can get." At the same time, if I'm visiting them, and I spend most my time in bed, she says, "You don't like spending time with us."
Also, I have a friend reunion coming up and a couple of those friends, knowing how terrible the fall was for me, have been super understanding about me coming only if I'm well enough.
My old specialist was a huge proponent of pacing and resting. While she didn't have M.E. she was able to see over and over what happened to those who didn't learn to pace. She told me once if I didn't take better care, I might end up in a nursing home in my 30s…because she'd seen it happen.
Do your friends or family members ever encourage pacing and resting, avoiding P.E.M.? It must be hard from the outside to see someone you love just laying around all the time, cautious to ever go out and "do things". As a friend or family member, one must wonder if the person with M.E. isn't just a little lazy or overly cautious, whether it's really that bad and not in some part a "mental" issue. I mean they even look well.
Another pet peeve I have is when friends start using the word "crash" when talking to me about how "tired" they are in their own lives, once again demonstrating that they think "crash" means really tired, rather than really ill and weak. So now I try now to use P.E.M., or "I'm having an M.E. crash." I can still feel empathy for others who get downright exhausted living their lives. It's just that P.E.M. or crashing is a biological immune reaction to activity and not - really tired.
According to research thus far, M.E. is the only illness that shows biological abnormalities in metabolism, heart function, and the immune, and nervous systems 24 and 48 hours after exercise. This is not the same as being "tired". Basically when we, people with M.E. are active, 24 hours later our bodies react, releasing immune cytokines similar to those released when someone has a virus. So P.E.M. or crashing, really is like being sick.
So on a very positive note, I have some GREAT news about my health to report. However, at this point I'm going to leave this as a teaser. The treatment seems to have made a big difference (quite drastic in fact) for a week now, but I don't want to find out that the changes are some kind of fluke. So next week, if the improvement continues, I'll report on the treatment that is responsible.
Friday, November 7, 2014
Some research news
Hi folks,
Sorry I haven't posted for a while. I'm trying, with my limited energy, to work on my PhD. I've also started doing a little bit of art/printmaking again, so I don't have much left for writing.
Remember how I was hopeful about the Standford research group? Well they published a study last week, and despite it's very small size, it got a lot of press….perhaps because it's Standford?
Here's a link to an article about it. Basically, the researcher/s in the Standford group looking at the brain, found some significant abnormalities in the M.E. group vs healthy controls. Not surprising…I think when all's said and done, this illness will turn out to be similar to M.S. - a neuro immune disease.
They mention that these abnormalities, could be the result of an infection or infections…but what's even cooler, is that the level of fatigue/weakness, seemed to correlate with the abnormalities:
http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html
Here's another group that is crowd funding in order to do research about M.E. They have been unable to get money from the government, mostly because M.E. is ridiculously underfunded and still stigmatized.
If you want to give to a good cause, I think this is one. I gave $25 a while back despite being broke. Perhaps I should do some kind of fundraiser (with all my vast amounts of energy) haha.
http://www.microbediscovery.org
Here's a proof of the print I've been working on. It's getting there. I'm going to run some more, perhaps making the horizon slightly brighter so the sun shows up better.
Today is a really really sick day. I am achey and fluey, sore throat, headache, weakness, hurts to breathe as if someone scoured my lungs. I went to the dentist yesterday, so I'm guessing this is a crash.
I'd rather be a healthy person with two cold viruses at the same time and run a 10km than suffer a crash day with M.E. It's worse, and the sad thing, is I'm not exaggerating. Not even close.
Sorry I haven't posted for a while. I'm trying, with my limited energy, to work on my PhD. I've also started doing a little bit of art/printmaking again, so I don't have much left for writing.
Remember how I was hopeful about the Standford research group? Well they published a study last week, and despite it's very small size, it got a lot of press….perhaps because it's Standford?
Here's a link to an article about it. Basically, the researcher/s in the Standford group looking at the brain, found some significant abnormalities in the M.E. group vs healthy controls. Not surprising…I think when all's said and done, this illness will turn out to be similar to M.S. - a neuro immune disease.
They mention that these abnormalities, could be the result of an infection or infections…but what's even cooler, is that the level of fatigue/weakness, seemed to correlate with the abnormalities:
http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html
Here's another group that is crowd funding in order to do research about M.E. They have been unable to get money from the government, mostly because M.E. is ridiculously underfunded and still stigmatized.
If you want to give to a good cause, I think this is one. I gave $25 a while back despite being broke. Perhaps I should do some kind of fundraiser (with all my vast amounts of energy) haha.
http://www.microbediscovery.org
Here's a proof of the print I've been working on. It's getting there. I'm going to run some more, perhaps making the horizon slightly brighter so the sun shows up better.
Today is a really really sick day. I am achey and fluey, sore throat, headache, weakness, hurts to breathe as if someone scoured my lungs. I went to the dentist yesterday, so I'm guessing this is a crash.
I'd rather be a healthy person with two cold viruses at the same time and run a 10km than suffer a crash day with M.E. It's worse, and the sad thing, is I'm not exaggerating. Not even close.
Sunday, October 26, 2014
Crawl into your lair!
Halloween approaches. Who better to represent this holiday than someone like me? I'm like a creature, abdormal…mostly living in my lair.
Ha ha
I've been pushing it a bit lately, and then crashing. Sometimes I'm so ill and weak and utterly fatigued that all I want to do is curl up in a ball and disappear.
On the other hand, I'm still having moments where I function (a little) briefly, so that's nice.
For a week now I've thought I had a cold or flu, then changed my mind, then changed it back. My throat's been worse, my achiness/fluiness worse, and major sinus issues. All these, however, could just be M.E….it's crazy making.
After 6 months, I was able to find a few moments to work on a print. For fun, I'll post a series of photos showing the process. The image was created by carving two blocks, inking them with oil ink, then pressing them - whereby the image is transfered onto paper.
Then later, I added the yellow and the canoe with watercolour paints, so this is technically a mixed media piece. Not the best, but not the worst either. I like the feeling of movement with the piece.
On another note, I saw a long article, a follow up, from the video I posted last time. So if you want to know about the huge immune project going on at Standford, (and you're up for reading a long article) here you go. At least it's hopeful making:
http://stanmed.stanford.edu/2014fall/immune-system-disruption.html
Ha ha
I've been pushing it a bit lately, and then crashing. Sometimes I'm so ill and weak and utterly fatigued that all I want to do is curl up in a ball and disappear.
On the other hand, I'm still having moments where I function (a little) briefly, so that's nice.
For a week now I've thought I had a cold or flu, then changed my mind, then changed it back. My throat's been worse, my achiness/fluiness worse, and major sinus issues. All these, however, could just be M.E….it's crazy making.
After 6 months, I was able to find a few moments to work on a print. For fun, I'll post a series of photos showing the process. The image was created by carving two blocks, inking them with oil ink, then pressing them - whereby the image is transfered onto paper.
Then later, I added the yellow and the canoe with watercolour paints, so this is technically a mixed media piece. Not the best, but not the worst either. I like the feeling of movement with the piece.
 |
| first carving |
 |
| carving with ink |
 |
| Paper image with bottom layer of ink |
 |
| key block (or top layer) inked up |
 |
| paper showing two block (two colour) image |
 |
| More colour added to tamaracks, aspen and canoe with watercolour paints |
On another note, I saw a long article, a follow up, from the video I posted last time. So if you want to know about the huge immune project going on at Standford, (and you're up for reading a long article) here you go. At least it's hopeful making:
http://stanmed.stanford.edu/2014fall/immune-system-disruption.html
Thursday, October 16, 2014
The good ones are rare…a hopeful video
My nurse practitioner, the last time I talked to her, made some off-hand comment about the backwards Drs in this town. For some reason it seems like every specialist and almost every Dr. I've seen here has been disbelieving of M.E., patronizing and chauvinistic. It's like Medicine back in the 50s or something.
And on top of that, M.E./CFS is completely off their radar, nonexistent, not really an illness. So getting any kind of help/treatment is almost impossible. Now that my specialist is gone, I'm on my own. Which means, basically, that my best course of action is to stay away from Drs., and if I have to see one, to lie about my diagnosis in order to get good care???!!!
Anyways, with the CFS politics in the US right now with the P2P and AHRQ which was supposed to come up with a good overview of current research and treatment of CFS/ME, but excluded most the research that shows abnormalities (for a number of reasons, some legit), and included research that was done on patients with a very broad inclusion criteria (i.e. that included people who were merely fatigued = not all of them had the disease M.E.), and to boot, as far as I can gather, few actual M.E. experts were included in the process:
If you want to read various perspectives read: http://www.cortjohnson.org/blog/2014/10/15/ahrq-report-excluding-progress-exclusionary-factors-missing-studies/
or read this: http://phoenixrising.me/archives/25905
Mostly, I've been trying to stay away from reading about it, because I just find it scary and depressing.
I feel as if there is little hope for the millions of us locked away in our homes, in our sick bodies, some for decades. I was feeling hopeless as far as seeing any possible treatment for future sufferers.
But today, I saw this video:
http://www.youtube.com/watch?feature=youtu.be&v=pvtbsStLQWk&app=desktop
Which reminded me even if they're rare, there are great doctors, researchers and research centres out there that are getting somewhere…and this one is located at Standford no less. I wish I wasn't too sick and poor to go there. Since my version of M.E. has always been viral, I bet they could help me. If I were rich and could teleport. Imagine even getting a part of my life back???!!!!
Anyways, I thought I'd share it.
On another positive note, I've had the best 2 weeks in ages! I'm still ill and feel like crap, especially in the afternoons, but overall I'm feeling less sick. I said to my roommate/friend the other day, "I feel like I have a personality again". Sometimes anyways. I know I can fake having personality sometimes in public, but the reality is that mostly I just feel like a disease…like a sick body. I'm so overwhelmed with weakness and malaise that I'm almost not a human, or the human in me is buried. To have a few moments where I remember there's a person in here, under all these layers of fatigue and illness is a treat.
I don't expect it to last, it never does, but I'm enjoying a few rare moments of less sick.
And on top of that, M.E./CFS is completely off their radar, nonexistent, not really an illness. So getting any kind of help/treatment is almost impossible. Now that my specialist is gone, I'm on my own. Which means, basically, that my best course of action is to stay away from Drs., and if I have to see one, to lie about my diagnosis in order to get good care???!!!
Anyways, with the CFS politics in the US right now with the P2P and AHRQ which was supposed to come up with a good overview of current research and treatment of CFS/ME, but excluded most the research that shows abnormalities (for a number of reasons, some legit), and included research that was done on patients with a very broad inclusion criteria (i.e. that included people who were merely fatigued = not all of them had the disease M.E.), and to boot, as far as I can gather, few actual M.E. experts were included in the process:
If you want to read various perspectives read: http://www.cortjohnson.org/blog/2014/10/15/ahrq-report-excluding-progress-exclusionary-factors-missing-studies/
or read this: http://phoenixrising.me/archives/25905
Mostly, I've been trying to stay away from reading about it, because I just find it scary and depressing.
I feel as if there is little hope for the millions of us locked away in our homes, in our sick bodies, some for decades. I was feeling hopeless as far as seeing any possible treatment for future sufferers.
But today, I saw this video:
http://www.youtube.com/watch?feature=youtu.be&v=pvtbsStLQWk&app=desktop
Which reminded me even if they're rare, there are great doctors, researchers and research centres out there that are getting somewhere…and this one is located at Standford no less. I wish I wasn't too sick and poor to go there. Since my version of M.E. has always been viral, I bet they could help me. If I were rich and could teleport. Imagine even getting a part of my life back???!!!!
Anyways, I thought I'd share it.
On another positive note, I've had the best 2 weeks in ages! I'm still ill and feel like crap, especially in the afternoons, but overall I'm feeling less sick. I said to my roommate/friend the other day, "I feel like I have a personality again". Sometimes anyways. I know I can fake having personality sometimes in public, but the reality is that mostly I just feel like a disease…like a sick body. I'm so overwhelmed with weakness and malaise that I'm almost not a human, or the human in me is buried. To have a few moments where I remember there's a person in here, under all these layers of fatigue and illness is a treat.
I don't expect it to last, it never does, but I'm enjoying a few rare moments of less sick.
Wednesday, October 8, 2014
A Rare Visit
First of all, thanks so much to all of you who commented on my last post. I really appreciated the kind words of encouragement and empathy. Comments help me remember that I'm not alone, and/or not the only one trying to navigate life despite this nasty beast of an illness. Of course the things that bring me down about my life aren't gone, but overall I'm feeling better this week (emotionally). And also less lonely (see below).
Today, like most days, I am laying in bed feeling very fluy, weak, sick. My legs are especially shaky and weak when I stand for more than a minute or so. So I'm forced to rest. I learned when I had my fall this summer, not to push through with shaky legs.
This past weekend, I had a really wonderful experience. A friend who also has M.E. came to visit! We have known each other for about 10 years now, we met online, a couple years after each of us got ill. She recently moved a few hours away from here, and her husband and her came up for the weekend.
It was so amazing to be around someone who I didn't have to explain anything to. For example, both of us had to lay down at different times, or stop talking/cut a conversation off because even talking can be so draining. Conversely, with friends and family members sometimes, if I cut a phone call short, or leave a conversation, they take offence. They think it has something to do with them personally, or worse, think I'm just over-reacting, that I can't be so drained/sick that I can't talk, I'm just not very tough.
The type of bone crushing sick/fatigue, and lack of stamina that comes with this illness, is something that I don't think I could ever explain fully to someone who hasn't experienced M.E. - maybe if they've had Mono?
Since my visitor and I have been friends for almost a decade (phone calls and emails), are a similar age, have been ill for about the same amount of time, and were both very active busy people in the prime of our lives when cut down by M.E., it was super comfortable to hang out.
Not only that, but our dogs got along well together.
Here they are swimming in the lake.
So if nothing else, that made my month, to have such great, understanding company. We visited, ate good food, watched a movie and TV.
Today, like most days, I am laying in bed feeling very fluy, weak, sick. My legs are especially shaky and weak when I stand for more than a minute or so. So I'm forced to rest. I learned when I had my fall this summer, not to push through with shaky legs.
This past weekend, I had a really wonderful experience. A friend who also has M.E. came to visit! We have known each other for about 10 years now, we met online, a couple years after each of us got ill. She recently moved a few hours away from here, and her husband and her came up for the weekend.
It was so amazing to be around someone who I didn't have to explain anything to. For example, both of us had to lay down at different times, or stop talking/cut a conversation off because even talking can be so draining. Conversely, with friends and family members sometimes, if I cut a phone call short, or leave a conversation, they take offence. They think it has something to do with them personally, or worse, think I'm just over-reacting, that I can't be so drained/sick that I can't talk, I'm just not very tough.
The type of bone crushing sick/fatigue, and lack of stamina that comes with this illness, is something that I don't think I could ever explain fully to someone who hasn't experienced M.E. - maybe if they've had Mono?
Since my visitor and I have been friends for almost a decade (phone calls and emails), are a similar age, have been ill for about the same amount of time, and were both very active busy people in the prime of our lives when cut down by M.E., it was super comfortable to hang out.
Not only that, but our dogs got along well together.
Here they are swimming in the lake.
So if nothing else, that made my month, to have such great, understanding company. We visited, ate good food, watched a movie and TV.
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