Let me preface by saying that this is not the first time I’ve needed to adapt to physical disability. In 2007 the MS had progressed to the point where I had to stop working. Some days, I didn’t get out of bed. Others, I would spiderman (bouncing from walls to furniture for balance) my way to the couch so I could at least watch a few hours of TV. My energy levels were lower than low.
My ‘awake time’ on the average day was about four hours. After this I would go nap for 2 or 3 hours. This would go on until bedtime, when I was most exhausted. This would be when my thoughts kept me awake for hours before I would fall into a restless sleep. I’d wake at noon or later and start the cycle again.
At this time I used a walking stick outside of the house, but I really didn’t like leaving the house without my future husband. Since my legs were so weak I worried about falling and being alone.
This went on from 2006-2010; there were no more relapses…just progression. I was rediagnosed with SPMS (Secondary Progressive Multiple Sclerosis). There would be no remission- just a slow downhill decline. I was 29 and could only expect to get worse.
Then, in 2010, I was treated for CCSVI (Chronic Cerebral Spinal Veinous Insuficiency). After the procedure, things slowly improved. A year later I wore 3″ heels and danced all night at my wedding. Considering I had needed walking aids a year previously, this was like a dream come true. The CCSVI story is for another post though…
My SPMS had apparently gone into spontaneous remission (most neurologists do not believe in the efficacy of the CCSVI treatment I had), and I was rediagnosed (again) with RRMS. A year ago, yet another rediagnosis proclaimed my MS benign. There were only minor relapses now and my MRI had been stable, showing no sign of disease activity or changes in any lesions.
Today I’m in the middle of a long relapse. I’ve had these before…all my major relapses have lasted at least 3 months.
I had to buy a new shower chair. It had been so long since I needed one we had given ours away. My walking sticks have been dug out of retirement from the very back of the shed, although I haven’t even touched them yet.
I know that the CCSVI treatment was not a cure, and none of my pre-procedure symptoms have come back. So this was not unexpected…I do have a chronic debilitating illness. So why is it so much of a shock, and disappointment when you relapse? I do believe I will come back from this…but how long will it take this time and how long will I be better for? What will better mean? Which symptoms will choose to stick around this time?
So far I have been beyond lucky in terms of the MS. I know many others whose stories are much worse. I just wish I wasn’t having to deal with this!