You may have noticed that (once again) I've not been around the blogosphere much lately. There has been loads going on here. I'm not going to blog about all of it because it involves others.
One thing I will blog about is *warning: rant alert* I AM SICK OF BEING SO DAMNED ILL ALL OF THE TIME!!!!!!!!! The problem is that Multiple Sclerosis is different for every person, no two people suffer the same things in the same way. One person may only be unwell during relapses and 'normal' when in remission.
In many ways I count my blessings because things could be a lot worse. But, on the other hand things could also be a LOT better.
I'm fortunate that thus far this unpredictable disease hasn't permanently affected a specific part of my brain. Instead, it's my brain stem that's been attacked and permanently scarred. Even when I'm not in an official 'relapse', and I'm supposedly in 'remission', I get weird symptoms EVERY day, and more often than not they make me feel yucky (every signal our brains send to our bodies has to travel through our brain stems).
I have random numbness that can affect any and every part of my body (ever tried walking with both feet/legs numb? Or, had a numbness/woolly feeling in your brain?). My most debilitating symptoms by far are the chronic fatigue and the dizziness/vertigo. I never know when they're going to hit me. These are only a few of the things my daily life is affected by, and the symptoms move around my body at random, meaning I never know how I'm going to feel at any given moment.
So, why am I talking about this? Because I've made a decision: somebody, somewhere has GOT to do something so that I can 'live' my life as fully as possible in between relapses. Nobody can know what the future holds for them, and God forbid that one day I permanently lose the use of my legs/eyes/... then, I'll look back on these days where I've been too 'yucky' to do anything, as wasted.
When I lose my legs/eye sight etc. for several months at a time in an 'official' relapse, it's amazing how accepting I feel about having MS. It's in between relapses that I struggle with it. And I've had enough. The medical profession have to realise how my everyday life is affected and do something about it. Or at least, admit to me that this is the way life is going to be from now on. Only then will I learn to accept my situation.
Today, I'm hoping I've had my first breakthrough. Usually I avoid doctors. Many (as in society in general) don't understand 'invisible' illnesses. Doctors like to go by text book symptoms, or at least symptoms they can see with their own eyes. MS is far from text book. Even neurologists (and I've seen some of the best) admit that the brain is the one area they still know little about.
I've now found a rare treasure of a doctor (new to general practice) who actually listens to me, and even appears to understand me. She seems determined to help me get my life back. For the past three weeks my eyes have been juddery, causing major nausea and dizziness. The doctor has thankfully reassured me that I'm not in a relapse, it's just another MS 'blip' affecting my everyday life.
She's prescribed me medication for the nausea and it works! There's nothing that can help my eyes from being juddery, but by controlling the nausea I'm hoping I'll be able to get out and about (although, I obviously still can't drive). I may even be able to do 'normal' things around the house.
For the next weeks I'm going to do whatever I have to do to get my health on an even keel and the MS under control as much as possible. Instead of refusing medication I'm going to try things that will help overcome the worst of the 'yucky' symptoms. Trouble is, all this takes what little energy I have.
If I'm hit with a relapse I know there's nothing I can do and I'll accept it. If I'm in between relapses I'm going to make damn sure that the medical profession are going to help me enjoy my everyday life.
Once I've got the MS under control I'm going to prioritise my writing and get this book finished. So, just to warn you, I might not be able to keep up with your blogs right now as much as I'd like. Internet has to be the least of my priorities for a while. I hope you understand. I'll still post on here (and hopefully Gray will too) when I've got something to say.
Until next time, take care, and HAPPY writing!