The last few days have been a roller coaster. A slow, sluggish & not fun roller coaster. I just went to the specialist at UBC hospital and had to try to define my MS symptoms. I found it quite difficult to describe the newest, latest symptoms. I had to borrow some of the words I hear at my monthly MS support group. Words are normally easy for me to handle so it’s almost like another new symptom for me to struggle so much with them these days. Cognitive difficulties are quite typical along with everything else so why am I surprised? It sort of makes sense that this is happening. The slow, insidious loss of my physical abilities accompanied by the mental trouble is frightening to say the least.
The left foot which has been numb for years is the most actively symptomatic part of my body. The most pain occurs there, the most numbness and the most intense nerve pain is in the left foot and leg. The right foot is the same but slightly milder. The folks in my support group has called the symptoms “creepy crawlies.” It’s like a cold, tingly sensation with the feeling of tiny bugs zipping around just beneath the surface of the skin. For some reason I always assumed that numbness was an absence of feeling but that’s not the case here. The numbness hurts intensely. It’s not a “nice” numbness. It’s the sort of numbness you get if you are outside in minus 40 weather. It feels “wrong” and it hurts. It keeps me awake at night. I think it’s similar to restless leg syndrome only it’s not just the legs, it’s the entire body. The entire surface of my body is just crawling with this cold, creepy, numb and achy sensation. There’s no way to sleep through this. It’s intense agony to lie awake with this and to try to get comfortable and get to sleep for hours on end with this going on. Sleep deprivation is just horrible for ones physical and mental well being.
So on my doctors recommendation I took a second dose of gabapentin with the seroquil at night. So here goes nothing, I take the gabapentin and the seroquil shortly before midnight and go to bed. Boom! I was out like a light (or like an elephant shot with a massive tranquilizer dart.) I had to get up a few hours later to go to the bathroom and could just barely make it there due to the vertigo and drowsiness. I woke up at 11:30 in the morning feeling extremely groggy and dizzy. Fortunately I had no big plans for that day. I could barely move around my house and do what I needed to do. It wasn’t until about 5 hours later that I felt safe to leave the house and drive my car. That whole experience was quite alarming. The heaviness of my limbs made me feel like a low functioning weakling. I spent a couple of hours just lying on the patio sipping coffee. I had a nagging fear that I’d never fully recover and that I’d done some real brain damage by medicating like that.
A part of me of course felt some relief that I had a good nights sleep. It’s been such a long time since this has happened. I convinced myself that my good Doctor wouldn’t have suggested this if it was harmful. I enjoyed the break from the constant nagging nerve pain. I decided that the benefits outweighed the risks and so took the gabapentin again before bed last night. The effect was much less drastic and I slept well without the heaviness and the vertigo. This morning I woke up at a reasonable time and didn’t feel extraordinarily drowsy so I think my body has just adapted to the new medicine cocktail.
So yes to make a long story short the symptoms are very difficult to describe properly. I look great and healthy on the outside so why do I park in the handicapped spot and why do I spend an inordinate amount of time sitting on my recliner with my feet elevated? Why do I not get a lot accomplished each day? Why do I shrink from any extra responsibilities or social opportunities? Could it be that I’m just too exhausted? Could it be that walking is excruciating and exhausting? My technique is not visibly affected but it’s damn hard to keep going these days. Please don’t expect too much. I’m not a lazy slacker. I am an MS sufferer and I’m doing the best I can. Thank you for listening.
lizluyben 