Seems like ms has been at the forefront of my mind over the last couple of days. I had pushed a lot to the back of mind but Think starting on Tecfidera it’s renewed everything for me. I got dx in July 2013 thought I was a long way from medication, but it’s here. I feel really alone. Had a bad start to it, partly physical & partly physiological. So turns out not only is the ms totally up & down but so is starting on the medication. I’m sat here thinking about to say, I want to say something but don’t know what to say.
stop worrying minnie
it is what it is
you’re not dead or even close to it.
it is still early days for you but you will manage, you can still have good times.
tecfidera is a doddle compared to daily copaxone injections and horrendous injection site reactions.
tec is a good drug to be on. it reduces relapses by at least 50% compared to 30% for copaxone and the other injectables.
it’s a positive thing to be put on a kick ass DMD like tecfidera. neuros have started to see that the earlier you start the better the prognosis.
when you say that you feel really alone is it just a figure of speech?
are you finding it hard to talk to family and friends?
i can thoroughly recommend the free booklets available from the ms society (front page - publications)
the rrms one really helped me to understand and was invaluable for telling my family.
maybe you’d feel better in the company of other people with ms.
the ms therapy centres are brilliant places, not all doom and gloom but can get very giddy!
the therapies on offer are marvellous and all at a subsidised cost.
most offer hyper-barric oxygen therapy which most of us rate very highly. (although don’t forget to take something to read as sitting in the oxygen tank for 60 minutes can be mind numbingly boring)
so start doing some research.
don’t allow yourself to slip into depression, if you start to get depressed see your gp because most of us have needed some helpful meds for this.
i actually appreciate what i have gained - a slower, more gentle pace of life. time to look at the beautiful skies.
it beats bewailing what i have lost - a high pressured career and bucket loads of stress!
if you need to chat more, feel free to private message me.
keep in touch because we all care.
carole x
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you want to say something… but don’t know what to say. this is not a symptom i have ever suffered…
things often come along and remind me of this MS monkey on my back… but life goes on. it feels like an unfair affliction and well… it is… but no one goes through life completely unscathed and so i’m perfectly normal.
a flare up or just a persistent symptom can remind me of what i have, or even the meds i take are a frequent reminder that i have a disease!!! and an incurable one at that!
but despite what i might think of as being a perfect world and how fair i might seem to be from it, the taking of meds is an entirely good thing. especially if i’m not having to stab myself with needles to enjoy it!
i grew up feeling that the taking of pills and potions was not a good indicator of overall health and so i avoided them at all costs. But now, i take a daily aspirin and blood pressure meds, vit D, vit B, vit B complex and of course, the mighty Tecfidera. basically my breakfast makes me rattle.
i was not too pleased with this development; so far removed from my perceived ideal. but then i reconciled myself with the cards dealt to me. i worked to find an element of control, so that despite everything, i afforded myself a sense of being able to determine my future. and then suddenly i realised that the menu of drugs being religiously taken isn’t a burden or reminder of a curse, but is in fact an investment in a healthier future.
so chin up. take you pills. and make plans!