One of the things about this foolish, changeable disease, is that you have to do so much self-management, sometimes in spite of your doctor. One can always hope to be on the same wavelength, but occasionally the focus differs and you have to think it through yourself. My neuro told me that the Baclofen I'd been prescribed by another doc for spasticity wasn't really needed in my case since I didn't have any spasticity.
Well, true, then I just had twitches, not spasms. So he gave me drugs for twitches. Fair enough.
So today I decided to try a baclofen. And you know what? It worked. I just came back from my first fast walk in weeks. My legs worked together with my knees and I could hoof it as I like to, fast enough to satisfy even the rampant poodle. My hips swung along like they are supposed to, easily, cheerfully, enjoying the movement. It was f-ing amazing.
Motion is so wonderful to experience when you've lost it for awhile. There is something so mystical about the way a body works together, the way the hip swings in the socket, the way the shoulders move within the framework of muscles, the support and flexibility of the spine. I am almost giddy with the joy of it all. Those of you, who can move easily - go for a walk. It's a true gift.
The National MS Society in the US has created this blogging thing where you can write in what MS means to you. Sometimes I think they just have their heads up their respective arses, if you'll pardon my language. I THINK they were looking for positives. It seems to be a current theme on some of these websites that you should be thinking "I have MS, MS doesn't have me" and talking about all the good stuff that comes into your life because of MS, blah blah blah.
Well, I'm as Pollyanna-ish as the next person, possibly more, and I try to see benefits in whatever life throws at me, but by GODS it is offensive when people who do not have MS come up with these campaigns. "MS means rallying around the ones you love" is an example.
Erm, don't mean to be snarky, but has anyone looked at how many of us live ALONE with MS? Hmm? And that we may not have people available to "rally around" us? I have some lovely friends and family, don't get me wrong, but I would wear them out if I told them all that was going on with me. They'd drop me quicker than a hot iron. And why not? They are all busy with their own concerns - sick parents, health crises, kid issues, rocky marriages, life. As Rick says in Casablanca, "Our problems don't amount to a hill of beans..."
But enough of that. The thing that stinks is that no matter how much you say to yourself that "MS doesn't have me", you are lying to yourself. It has its cold fingers round your throat, right enough. It lurks, waiting to screw up your life. You can take care of yourself, you can eat right and smile and read positive things and breathe pure air and yet, it's there, waiting.
So hey, my approach is to just laugh it off. Life is short. So what if I can't feel my fingers while I type this? They still type almost as well as they ever did - today. And walking? I always preferred the sitting and having coffee afterwards anyway - it's just that now I have to plan to do it sooner. Biking? Well, unless I get a better helmet, it's over for me - balance issues - but hey, I've always wanted an adult trike.
Reframing loss is one thing, but laughing at it is even better.
Sometimes, though, it isn't so easy. Sometimes Pollyanna leaves the building. Sometimes getting mad is the only solution, since self-pity is SO unattractive. Which is part of the reason I tell myself I have Mad Sow - craziness notwithstanding.
Fatigue in MS is a weird thing. Sometimes, it feels like water is welling up and gradually flowing over my head. Sleep is irresistible, exhaustion so complete that even eating is too much to contemplate (those of you who know me know this is serious stuff). It feels like a remix of the mono I had in University, where all I could think of was sleep. glorious sleep. I sleep sitting up, I try to make it to lying down. If I'm walking, my legs no longer move effectively. My batteries shut off.
Sometimes, the fatigue is cerebral. I can feel okay physically one minute, and then lose my mind the next. Can't talk, can't bear talking, can't even think of a thing to say. My lips don't want to move. Making decisions is almost impossible. I feel trapped within myself, deadened, mute. Even my hearing doesn't seem right. My vision blurs and I can't see well anymore. Parts of my visual field fuzz out entirely.
Sometimes, when I am feeling tired, if I get up and exercise, I can feel better. Sometimes the thought of that is just too much to bear. Sometimes, when I am tired of speaking, I can still write. Sometimes I can't even read.
It's bizarre, and just when I think I have it figured out, it eludes me again. For awhile I was mainlining coffee to cope, but that doesn't seem to be doing it for me anymore. I do know that if I go out at night, I need a coffee to see me safely home.
I panicked a bit. Just a little, in a sort of wtf way. Shook my head and decided to try going down the hallway - and once I had walked about ten steps, it became clear where I was.
It's one of the few times I've had that experience. The other brain things that happen are forgetting the names of people I've known for years, losing any concept of numbers, gradually losing everything around my apartment.
Right now my place is a mess, with way too much stuff piled around in messy heaps because I am trying to clear everything out I do not need and reduce my moving costs.
I feel as if my brain is floating rather unattached. Perhaps it's just this that has me confused. I hope so!