Saturday, June 20, 2009

An old friend came to visit today.......

and I say that most facetiously. My 'ol buddy TWF (Train Wreck Fatigue) popped in unannounced, unexpected and definitely unwanted today. Actually one of the worst bouts of TWF I recall having. I DID manage to get up and get dressed this morning (which I absolutely insist on doing no matter how crappy I may feel).

It all started when I woke up at 1:00 this morning having incredible leg pain. Of course, my pain medication was on the table across the room. I didn't want to wake Mark by turning on the lights and I'm not quite brave enough yet to transfer into the chair in the dark. So, I just laid there and tried to keep myself distracted by following the unfolding evening in Iran on Twitter. (An amazing thing. Information and picture were posted there HOURS before the information was reported or the pictures shown on the news. God Bless those poor people over there. From now on if there is anything going on in the world, forget the TV, I'll be following things in Twitter).

Anyway, Mark woke up about 3 so I was able to get some pain medication on board. I think between trying to fight the pain (I know STUPID, STUPID, STUPID), the fact that it's a bit warm and humid up here and I haven't been feeling the greatest, just invited TWF for a visit and it was a TKO. I was down for the count. I'd wake up, look at the clock and promptly roll over and go back to sleep. I'm sitting up in my recliner now fighting to stay awake. It's very frustrating. From now on, the bottle of pain medication will be kept on my nightstand. No more stupidity of just "trying to get through it".

I just hope TWF goes back from wherever she came from tonight. For me personally, TWF is one of the most frustrating aspects of having MS. The fatigue is amazing. You really can't begin to accurately describe it. The closest I can come is lying in bed, literally dying of thirst and there is a glass of water on the nightstand. However, you can't even reach out for it because your too tired. We won't even talk about stamina. I think I've forgotten what stamina IS. Whatever it is, I know I sure don't have any.

The second most frustrating aspect of MS is PAIN. Bet you thought I'd say lack of mobility. When I was first diagnosed with MS, I considered myself very fortunate that I didn't have any pain associated with it. That all changed about 24 months ago. It started with neuropathy then graduated to spasticity. Now I will wake in the middle of the night with my entire body not only feeling like a semi-truck ran over me, but it backed up and did it again. Add neuropathy and the muscle spasticity and it can be rough. Fortunately, I rarely have all three at the same time. I usually have the neuropathy and the spasticity together. Only the neuropathy is almost constant. I try to avoid taking pain medication unless I absolutely have too. I take so much medication now just trying to keep the spasticity under control, but sometimes I have no choice.

The mobility issue IS very frustrating, but more than frustrating it's just sad. It seems as if another physical limitation presents itself almost daily. For a person who was TOTALLY type A, not being able to do what I want to do, when and how I want to do it is pretty challenging. So, I concentrate on trying to keep a positive attitude about it. Instead of focusing on what I can't do I try and focus on ways to do the same things. Just differently. Not always so easy.

So, that's where my journey with MS has taken me today. I hope your journey today hasn't been as bumpy!

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