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Thursday, November 30, 2006

My Life with MS

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!


Sharon J said...

There's nothing that can quite compare with finding an understanding doctor when you have an unusual or non-textbook health problem, is there? I'm so lucky in that respect; my GP believe absolutely everyting I tell him and does his very best to find some way of making things easier (although that's far from always possible).

Good luck with getting MS under control, Sue. I understand perfectly why you have to make priorities although you know you'll be missed.

I'll be thinking of you xx

allyblake said...

Sue, I had no idea you had MS. When you spoke of dealing with illness I never expected this. And considering how far you have come through your current WIP, I am sitting here half wanting to hug you and half wnating to give you a right royal slap on the back!

Many people can't write as much as you have written and with as much verve and enthusiasm and support of the rest of us without complication the likes of which you suffer.

You amaze me, my sweet, and to hear you have found someone to amaze you makes me want to cheer.

Hugs and happy writing!


Trish said...

SUE!!!! Lemme tell you your presence online will be SORELY MISSED!!!!

But YOU take care of YOU! I'm not much of a fan of the Medical Profession either I'm afraid. When I had my clots a few years back it took four hospitals and seven doctors before someone would believe I wasn't faking the pain I was in! And considering I NEVER go to the Doctors unless I'm DYING I was very upset about it... Took one of the darn things to try making a trip up an artery before someone would take heed. I even had one locum look me in the eye a week beforehand and tell me I was too young to have clots and it couldn't possibly be that... And YES I did go see him afterwards... I even did the traditional Irish *tit shelf* stare...

To this day I have a damaged left leg because of it all...

So BANG DOWN DOORS if you have to!!!

You are such a strong person and so inspirational to new writers out there that I just know when you set your mind to writing you will do a damn good job of it!!!

H's & K's always

Margaret McDonagh said...

Sue, I am so relieved and so proud of you for going to the doctor. Fabulous news that she listened and helped and understood. As we've discussed before, sadly this is not usual! My health issues are not the same, as you know, but I do understand the frustrations and how daily life is changed forever and you cope as best you can.

You know what I think of doctors! And why I write Meds to invent nice ones I've not found to exist very often! And your new GP sounds a real Med heroine. The most important thing is having faith in her and building that all important rapport and trust. It sounds like you have a gem in her and I hope she is there for you whenever you need anything.

You are doing brilliantly well and are a real inspiration. Keep going, keep living the best you can and enjoy all the good things that do still happen.

Good luck.


Melissa Marsh said...

Sue, I can't even imagine what you're going through, but you are incredibly strong and courageous. MS has to be hard to live with because it is so unpredictable.

Finding a good doctor is one of the best things you can do. I'm so glad you found one that fits your needs and listens to you. That is so important!!!

Take care!!!


Nicola Marsh said...


you are an inspiration.

Writing through the constant see-saw of MS symptoms would be a challenge in itself, not to mention tackling the medical dramas via docs who don't listen!

I'm so happy you've found a good doc at last and I'm looking forward to hearing your word count progress :)

Will miss you!


Jessica Raymond said...


I must admit to being woefully ignorant of the range of MS effects... *shame*

You cope with so much already that it makes no sense at all to put yourself under more pressure. I know what it's like to have that feeling of "expectation" from yourself and that when you don't achieve what you wanted to you start to beat yourself up. At least, I do...

But you take all the time you need. Work at your own speed -- when you can, how you can. It will be miles better for you and I expect you'll feel like you've achieved so much more.

Best of luck!! *hug*

Jess x

P.S. I did get your email, but my program buggered itself up the next day and, of course, now that the message was downloaded into my inbox, I can no longer get it! Hence I've lost your email address (all my email addresses, in fact) and the message -- can you resend it? :)