Sunday, December 09, 2012


Medics have said that John and I, but especially John I suppose, need to speak up at the first signs of stress reactions by my body or mind so as to avoid this crash into a tough relapse. Well, today, as I was about to cast off my pair of socks, I noticed not one but TWO dropped stitches, way down at the start of the leg. Mmmmm...that is a sure sign me thinks! Other than that I am not sure. 

 I fit in a swim today with rather interesting results. I loved the swim I have to up one of the meds in order to do it relatively pain free. All I had to day was pins and needles down left side of left arm and then numbness. Unfortunately for my body, they decided to start the pool maintenance whilst I was swimming during the final hour of the day. The pool gradually got cold and as it did so, I got cold too. NOT a good thing at all for me. I got out when it became too much. trouble is I thought it was me and this worried me but as I was no able to swim straight by this time, when I hit the far wall it was not in my usual place and I could feel the cold water rushing in thru the holes in the wall. Okay, I thought, not good, get out. Well, since then, my jerkiness and shaking has come back with a vengeance. At least I know it is not connected to either use of or non use of my drugs as these happen with or without. 

 Hospital again tomorrow. Another 3 hour exam. I am thankful for all the interest and care but I hate this. Talking in depth about it brings it very much to the fore and I feel much more than I would normally and I also think much more about it's ramifications in our lives. A close friend hates it too because it makes her cry. It doesn't me. I am not detached from all of my feelings, just my body and it is hard to remain detached when talking about it in depth like that. I end up back inside myself and then I feel it physically which clearly is not so brilliant. I can't just say 'out, get out' to myself because I have no idea how I detach from my body. It isn't that i don't feel hurt, I do, but my mind is on other things. Sometimes, that doesn't do it, clearly, otherwise I wouldn't use pain killer's. 

So I am not sure if I have even explained cogently why talking about it in depth is something that causes more awareness of the pain and the future. Okay, the latter, the future, doesn't take a genius to figure out-awareness of my body as it is now brings with it fear of what may happen, MAY, in the future. It is not knowing that is hard to plan for and coem to terms with. It may not get any worse, though in this last 8 years it has, and over the last 30 very much so. That doesn't mean it won't anymore and my dr says what i do for myself has lessened the effects on me today. Who knows if that is true. It does indeed give me goals and achievements and makes me feel other than useless. I am also pretty surprised by my own tenacity and determination and capacity for pain. I would never have guessed this to be how I would deal with a debilitating, painful, progressive disease. 

 Whilst I accept my disease and do follow my dr's advice, I still under report. For example, if asked 'can I shower myself' my response would be yes. I can get my clothes off, usually slip on slip off. I would have much more trouble if wearing proper clothes. I have bars to hold, quite a few, at the pool which is why i prefer showering there even after converting the bathroom to a walkin shower at home. At the pool there is also an emergency cord. I can stand under the shower. I have not thought about this part which is the reason why i am told I cannot shower myself-I rely on the soapy water from my head to run down my back because I cannot get there with my hands. I also dress wet backed because I cannot dry myself. I never mentioned that. I just said I could shower myself. 

 I have got so used to what i can and cannot do or the way i do things that I no longer recognize whether it is normal. Meaning how much of what i do is not what an able bodied person does. Adaptations are slow, as the disease progresses and I become more normal to myself and less normal to others. This is so hard to think about and to see. 

 That is all I can manage today. I am pleased to say that this was hand typed with very few errors and no gobbledegook. Typically odd when my fingers and arms are jerky and shaky but I have been watching my fingers on the keyboard and paying attention to guiding the correctly. This not back to the 80wpm all finger typing I was once capable of. No just two finger typing but I am doing it accurately, for the most part, today, when mostly I need to use the speech to type program I use. I don't know if this concentration on my fingers so as to type this by hand is a plus or a minus or a nothing, meaning it makes no difference either way.


Anita said...

I think you are amazing. Truly.

Iris said...

I'm glad you're getting help. It's hard to know when, exactly, we need that extra help. It's probably a really good thing that John is with you more these days. All chronic illness is a pain in the arse (and mind). I'll be thinking of you through this. You've made it thus far and you'll get through this, too. I send my hugs and what support I can across the sea and cosmic forces. I agree with Anita.