I tried running errands this afternoon (a quick stop at the bank two blocks away) and I bought some dog biscuits at the pet store. I returned home feeling ill - very fluy, weak and beyond fatigued - muscle tremors to boot. It was more than I could handle. No art class for me tonight, which makes me sad.
I sometimes question everything I'm trying to do. I've been deemed "permanently" disabled which means I will receive payments until I'm 65, unless I go back to work and am earning more than my payments (which wouldn't actually be that much). It's a type of social assistance disability. So being sick, why am I trying to pursue this PhD?
I've been asking myself this question lately. Since my M.E./CFS fluctuates, there are times where part-time graduate work - mostly from home - is doable. However, there are also times when I'm crashed, or the demands of the graduate work are higher, where it's just too much.
And as anyone with M.E. knows, sometimes you attempt something at the edge of your limit, and you succeed, and other times you crash hard and loose function (which to put it bluntly sucks).
I really enjoy both the social and intellectual aspects of working on this degree. Most mornings I spend 30min -2 hours reading, researching and/or writing. It gives me a sense of purpose - and it's just interesting. Because my energy/illness is so unreliable, I have trouble imagining other things I could do if I decide to drop the PhD that would give me equal fulfillment with such a flexible schedule. However, whether I drop out of the PhD or manage to get it, I'm hoping either way I'll find some at-home work I can do on a part-time flexible basis.
I've been trying to figure out what's so disabling about this condition for me and perhaps others? Well first, I think it's the PEM (post exertional malaise). Basically effort = feeling very ill and weak and the more I do, the sicker and weaker I feel.
Why was I able to do a full-time high energy job before M.E., even when I had something like a cold or the flu, but I can't push through the M.E.? Well I think the first thing is that pushing makes M.E. much worse, whereas when you have a cold or something and you push, you just continue to have the cold.
Also, the fatigue/weakness of M.E. along with the fluishness is so much more severe than anything I experienced in my past "well" life. The only similar experience was perhaps a day with influenza - while the symptoms are much milder, the weakness is similar or worse. The other disabling M.E. symptom (which comes when I push) is dizziness - a flu-like dizzy experience. It's hard to function with the M.E. dizziness.
Finally, I think the chronicness is disabling. While some of us in the beginning year or years were able to work, working while sick month after month takes it's toll (and in my case anyways) made the condition worse.
New poll on the right :)
Your pondering here has me thinking too. I am so sorry you are struggling so with such fast crashes. It seems like right now you are able to do more mental work than physical? Maybe your energy goes to the mental work and not enough left for physical? Ahhhh what do I know Maybe it is just the nature of this beast.
ReplyDeleteIt's amazing to me how it continues to trick you ... there are still times when you think you can just push a little to get something done when you should know by now that there will be consequences ... I guess it's a kind of denial that we just can't manage to get beyond. I think it's fantastic that you are still committed to doing the study! It's something i would like to have a go at if I am ever well enough to start.
ReplyDeleteRenee, it's an interesting thought. My specialist thinks that mental energy might physically fatigue me. It's tough because i rarely get any brain fog that almost everyone with M.E. gets.....I think it might be a small contributer, but my major obstacle is physcial. Just wiping the snow off my car and driving a few blocks (at least I think) is what crashed me. Also, only one long rest the day before (I usually am in bed much more).
ReplyDeleteLee Lee I agree, while I fully acknowledge the illness at this point, I'm still in denial about it's severity. FOr some reason I continue to act like (on my good days anyways) that it's not too bad, only to pay over and over. For such an "intelligent" person (heehee) sometimes I'm an idiot. I know several people who have done at-home studing with M.E. I hope you get well enought to give it a shot at some point. What do you think you'd study if you could?
Yeah, it's the 'chronic' bit that gets old. I think ageing and the stress of having this illness brings our bodies to the point of being beyond the point of no return. So like a piece of elastic that can snap back when it's young, there comes a point where it loses it's elasticity and there is no snapping back. (Thanks to Dominique for that concept). Also, to continue the analogy, if you constantly keep elastic under tension, it's not going to last as long as a piece that is 'rested' or kept under less tension.
ReplyDeleteI try not to give advice (and fail) but if I were you're Mum I'd say shelve the PhD and prioritise your recovery. It's not a failure.
Big hugs coming your way ((()))
Jo,
ReplyDeleteThanks for the advice - no really, I don't mind. And I take fellow patients more seriously than others who don't understand what we actually go through.
I tried doing almost nothing as a means to recovery and ended up lonely idsolated and depressed....and it didn't really improve the M.E. either. I really NEED something in my life to not go crazy. It's just figuring out what I can do without making myself sicker right?
Here's a question: (many)
ReplyDeleteDoes anyone here have spells where you'll have shortness of breath or air hunger as I've heard it described, along with a rapid resting heartbeat (100-110)? It's as if I can't get a deep breath and the air I breathe isn't absorbing oxygen; as if I'm trying to breathe through a wet blanket. Does this sounds familiar to anyone? I've gone through spells like this before, particularly when I'm in a flare, but I don't know whether to pursue it aggressively or just wait it out because it's just what cfids does. Last time, four years ago, I had this and he sent me to a pulmonologist who did the whole breath air capacity test deal and x-rays, as well as an ultrasound of my heart and a holter monitor. My puffing test came out just fine, as did my heart tests. With this recent episode my Doc did an ekg in the office and all it confirmed was that I had a fast heart rate; all else looked good. Anyway, he's sending me for some specific bloodwork so as to be safe, as well as sending me to an infectious disease specialist after we get the results of lactic acid et al. tests back.
I just hate, hate, hate when I'm so ill. It honestly feels like I'm slowly dying. My skin is pale yellowish (I'm fair skinned, but I look so sick) and my dark circles are so dark right now. Also, I had a slow-acting steroid injection (Medrol-slow acting, lasts 2-3 months) for another problem I have (pudendal neuralgia, which is just as fun and excruciatingly painful) and I'm wondering if anyone has had experience with cfids and steroids because the injection was supposed to help the nerve pain at about 2 weeks post-injection and it did, however I also started menstruating 2 weeks to the day after injection and I've been bleeding ever since: that's Jan 3rd- to today! every single day. I think the steroid sent my hormones awry, however try getting a gyno to test your hormones based upon your gut feeling. Instead I had to go through a sonohysterography and it showed that I had a uterine polyp. So the gyno insists this is the cause of bleeding, which yes, I would agree if I were just having spot bleeding, but that's not the case. I'm having a full out period with bad menstrual cramps, tender breasts and migraines: aka a period. Still they insist it must be the polyp. So finally, I had surgery about 3 weeks ago to remove the polyp (hysteroscopy & D&C) and I was given general anesthesia and totally put out. Has anyone had experience with anesthesia in that it sent them into a nasty flare? Is it possible my body is having trouble clearing all the chemicals/meds out of my system and that's why I'm so very ill right now? By the way, the polyp is out and the cramps and bleeding continues. I'm telling you, it's a perpetual period. But I have to rant and scream to get the doctors to do what needs to be done every time I have a problem. I'm utterly mentally and physically exhausted from the conditions, as well as the job of managing my care with physicians who are so difficult. Every suspicion I've ever had about my health has been right, but when I tell the docs what I suspect, because I'm a proactive, informed patient, they spin these XYZ scenarios at me, which I know aren't the problem, however I have to do the dance and go through the exhausting process of ruling things out for weeks, sometimes months at a time only to find out I was right all along. It took a year for my pudendal neuralgia to be diagnosed and I diagnosed myself 3 months into the problem. I was poked and prodded from every direction you could imagine: what a waste of energy, time and insurance money.
Sorry everyone, I'm just totally fed up and haven't the energy to do BE the doctor for the doctors anymore.
Thanks for letting me vent. I hope you guys have some suggestions or answers.
jenji
Wow Jenji,
ReplyDeleteThis is terrible - everything you've gone through as of late. I can speak to one of your questions. Also, I could do a post and highlight your questions. (It's mostly M.E. people who read this blog along with a few of my close personal friends).
As to the surgery, I know (and I think it's my CFS specialist who noted this) that surgery can be a trigger for relapse. Just like some get CFS/ME after an infection or vaccination, surgery, since it stresses the body, can cause a relapse/flare which means you can expect to take much longer to recover. Now saying that, I've never had surgery so this is just what I've heard, I’m not saying this through experience.
I'm not sure about the air hunger. Do you have a hunch about what it is? One of my quintessential symptoms of M.E./CFS though, is a very heavy achy fluy chest thing. Any day where I'm feeling bad it aches to take a breath and it lasts as long as the flare/relapse/crash. Like you say about knowing, or having a sense of what's going on, I think for me, there is some kind of infection in my chest (not my lungs, but somewhere near by).
Just curious (and I'm sure they've checked what with the heavy bleeding) how about anaemia?
Sorry, I know this isn't much. It absolutely sucks you're so ill right now....I know too well. Let me know if you'd like me to post these questions as a blog post?