I'm home safe and sound. Not completely crashed (yet). Travel was very very difficult but worth it because it ended, with me being home.
To get "credit" for the course I just took, I have one assignment I still need to do worth 25%. I'm not even sure if I will. I'm feeling disillusioned by the whole experience.
Had I known how difficult and awkward it would be to do that course, I wouldn't have tried. But hindsight is 20/20 right? I feel like I've been through some kind of trauma. I pushed myself so hard to move through the feelings of illness and fatigue that each day by the time I came home I was crying or close to crying (not in public mind you).
It was awkward dealing with the social aspects...people asking why I left class, people asking me to do projects or social things that I couldn't do but didn't want to have to explain. When I missed three days in a row, people asking what was wrong, how I was.
It's a weird dance this "trying to participate" isn't it? On the one hand I wanted to be another student...defined by my personhood and studentness, not by the fact that I'm ill. I think some people were purely curious and perhaps others sympathetic; however, I didn't want to have to share my story with everyone. Ultimately I didn't want to be different.
It's funny too, I did not come out of the closest with my diagnosis either. I just told the three or four people I had to, that I have an "immune disease". Very much the truth; however, I guess not the whole truth.
One last thing and it's a question for my fellow M.E.ers.
I'm not someone with M.E. who struggles with neurological symptoms to the degree that most do. In fact, looking at the new international criterea, I'm short in the neurological category (by one or two) and might not even get a diagnosis. However, since the spring I have a newish and definitely increasingly problematic symptom: tremor.
Now I've had tremor (more like an internal buzzing) since onset on and off, but this is a much more "motor" tremor. It's very visible and much worse if I'm trying to do any fine motor task. I've broken numerous dishes, dropped things, had trouble with my fork, a pen, and even typing. This morning it took two hands to lift my mug I was so shaky. It's worse if I'm tired or hot (like after a bath). And my roommate this summer noticed it (awkward). It's starting to get bad enough that it's limiting my function to some degree.
Sound familiar? Thoughts? I'm going to ask my specialist about it when we have a phone consult next week.
I have had steady tremors and what I call internal vibrating/shaking for at least 10 years now. The tremors subside but not the internal shaking that can be felt by others but not seen. At first it only came when I was pushing, or exhausted, or stressed. Then it became worse and worse...and eventually stayed and is just at different levels according to how well I am doing. I have been told it is a symptom of Lyme as it is a disease of the brain, BUT there are others with CFS/ME alone who have it. I am sorry to hear you are having it now. Pushing and crashing made it worse for me Gail. It is not a fun symptom that is for sure.
ReplyDeleteI prefer to think that I am perfectly fine and still and it's the room and everything in it that is shaking!!! Tremors have been part of my daily experience since onset ....
ReplyDeleteOh, I love your attitude Lee Lee. Great perspective and I needed a chuckle today!
ReplyDeleteOh thanks for the feedback you two.
ReplyDeleteIt sounds like it's not too uncommon then? Do you have the trouble with fine motor stuff and dropping stuff?
Lee lee, have you been told what it is at all? I know you mentioned it might be part of POTS. POTS is also on my list to discuss next week with my specialist.
Yes, my fine motor skills are hopeless, drop everything now .... and trying to hold a pen and write is embarrassing!
ReplyDeleteI just put it down to central nervous system damage ... maybe part of the POTS stuff but I (and many others) have so much neurological stuff that I just consider it part of the fun ... it's annoying but it's less worrying than some of the other neuro problems. I think if you are worried then maybe you could think about taking supplements that help with nerve conduction etc? Not sure off the top of my head what would be useful but I am sure a google search would turn up some useful suggestions :-)
Welcome home!! I'm sorry this turned out to be such a difficult experience for you. Yes, it is very tough...impossible, really...trying to participate in life like any healthy person would. You bring up a lot of questions and issues in this post that I wrote about in one of my posts a while back:
ReplyDeletehttp://livewithcfs.blogspot.com/2010/12/who-do-you-tell-and-how-much.html
As for the tremors, it sounds like you need to see a neurologist. It's likely an acceleration of symptoms due to the trauma of all you tried to do recently, but my doctor always tells me it's important to check out any new or increased symptoms. Hopefully, these new symptoms will calm down as you rest and recover, but it pays to err on the cautious side and see a doctor.
Rest, rest, and rest and take care of yourself.
Thinking of you...
Sue
Lee Lee - LOVE, LOVE, LOVE your perspective! I have to remember that one! ha ha
ReplyDeleteI agree with Sue. I would get that checked out. We can all assume it is ME but I think this symptom needs to be evaluated because it could be several other conditions as well.
It is better to know for sure.
I'm sorry your 'student' experience was so difficult. It is so hard to explain to people. My mother told me the other day that she thought I had been collapsing and then getting well and then collapsing for the past 18 years! It suddenly dawned on me that is what it must look like to people who don't have this illness and how confusing that must be.
I hope you are resting up and that the PENE (post exertional neuroimmune exhaustion) is not too severe!
Sending hugs and love.
Actually, that sounds very MSish. Surely neurological.
ReplyDeleteI don't have buzzing tremors, but I do have a clumsiness I never used to have. If I'm holding something, I'm sure to drop it. But it's not necessarily because of a tremor.
Ironically, I still hold babies without problems. :)
Definitely talk to your doctor about this.
Glad you're back safe and sound.
jenji
Thanks Sue, Dominique and Jenji...for commenting. It's good to hear from others about this stuff (as I'm sure you know)...I'm going to get it checked out.
ReplyDeleteAnd Dominquie, I have been resting up. I'm sicker, but not as crashed as expected which is nice. I won't be doing something like that again.