I WANT MY LIFE!!

I have MS. I have a relapsing/remitting MS, which means that sometimes, the MS does something nasty to me.  Recovery takes time. I had an MS attack (a relapse) that lasted for nine months. In terms of Quality of Life this scores negative points.

Life becomes small. You can’t walk far without extraordinary fatigue, sometimes you can’t see properly, sometimes there’s agonising nerve pain.

‘Normal’ life isn’t really possible. Each morning I wake wondering how tired I’m going to feel and how much pain I’ll be in. Sometimes I feel pretty good and quite often, I don’t.

I think that endorphins those ‘feel good’ chemicals that the brain uses to help the body function well, are all-important.

If I exercise, I feel better afterwards and if I socialise I feel pretty good.

Tiredness doesn’t really cover this general level of malaise. It’s behind everything, lurking, just dragging things down a bit.

I had been taking Low Dose Naltrexone, which had helped with those nice endorphins. It doesn’t seem to do anything now and I’ve stopped taking it. No changes, no worsening, nothing, just a lack of endorphins.

There’s been a certain amount of discussion on the MS drugs. The older drugs, known as DMDs or DMTs – disease modifying drugs/therapies, don’t work for everyone who qualifies for them.

What they do when they work is slow down or stop the relapse rate.  Those nasty attacks, that suddenly ruin your life for weeks or months, become scarce rather than regular.

I started Rebif44 a few weeks after diagnosis. It has worked very well. My relapse rate went from every eight weeks or so, to one every three years. That’s okay. I’d prefer none, but there I am, still walking and able to remember who I am and where I live.

 If one of these drugs works well, then your body has time to heal and recover from the very horrible symptoms.

Someone, at sometime in the past decade decided that they ‘may’ reduce disease progression, that the drugs may slow the decline, changing RRMS into SPMS (secondary progressive MS) which doesn’t respond to any drugs.

It may respond to LDN, but no one really knows for sure. 

So, the DMDs reduce the relapse rate and by all logic, the lesion formation rate.

There are intense discussions in the world of MS, arguing that a drug that doesn’t stop decline, is worthless.
Except that for people like me, a drug, which stops relapses, is very, very important.

I want to scream at them I WANT MY LIFE!

Something seems to go on underneath this disease activity, which eventually shows itself as progression. With progression, there’s no recovery, no wonderful bounce back to health. If a person moves in SPMS, then the lucky ones will have a slow and gradual decline.

 

The wheelchairs are waiting.

Dark forms in alcoves, just lurking,

I move quickly, staying in the light, I sing,

I play my musical instruments and learn foreign languages.

If I stay in the light and soak up the sun, boosting my vitamin D3 levels then maybe, just maybe the wheelchair with my name on it will slowly dissolve.

I may one day walk more slowly.

I may feel the pain of old age, but I want to go out mobile and kicking and yelling against the dying light.

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