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Tuesday, 26 May 2015

It's been a while...

Well happy 2015 to you all - I know this is a bit late in the year to be wishing this, but this is my first blog of the year!

I've noticed on the stats option in the design part of my account, that I seem to have a lot of readers in the Ukraine, which is great (hello to you!) However, I also noticed that the referring Urls seem a bit questionable (one of which has P0rn in the title), so goodness knows why my blog is being referred from there! Haha.

Anyway, things with me are still pretty much the same - I'm still exhausted & I'm still having cognitive issues, these both are my main obstacles in not being able to work. I've been off work for a year and two months so far!

I have noticed a difference with my medication, in that I have kept to more plans, but I still need my rest days in between (most days seem to be rest days though). Although I still get mixed days, where I might feel ok (for me), for one part, I could feel like shit on the next part, I do get whole days where I feel crap. It's disconcerting on the days I feel like I have some energy or my balance isn't as bad - as this is a rarity for me, there is a danger I can go overboard and be very unwell the next day or week.

Still, I'm trying my best to be the best that I can be. I'm going to start Pilates & Tai Chi at the MS Treatment Centre in Southwick - as this is for people with MS, I feel like I will be supported well & I don't need to keep up with the others. I also have some simple exercises that I can do at home - nothing strenuous by most peoples standards, but strenuous for me! I'm eating much better than I was, plenty of fish, fruit and vegetables - I thought that trying to emulate the diet I had when I lived in Portugal would work for me (minus all the alcohol of course!)

I feel like I'm doing all I possibly can at the moment, and although it's frustrating that I can't be "normal" (what I used to be pre-MS), I have been forced to accept my illness and diagnosis for what it is - a potentially disabling and debilitating disease, and adjusting my life around that for now.

I won't give up, and I don't have a defeatist attitude, who knows, I could be just going through a bad patch, and maybe this medication could be working its magic, and maybe I will get on to an even better medication that could transform my life. However, I have to be realistic amongst being positive, in what this disease has done to me, in the past year especially.

Last year was the worst year since being diagnosed - as I had my worst relapse so far, that stopped me working, and changed my life completely. I felt my most alone last year, and I now feel that I really can empathise with others who are house-bound (old and young alike). I was probably depressed, which didn't help (I say probably as I felt lower than low, but never got diagnosed, and I don't like to use the 'D' word lightly and potentially trivialise it!) There were times I was in so much pain, that I wouldn't have been bothered if I hadn't woken up the next morning. The pain was caused by spasms, and I found it hard to get hold of any decent painkillers to help - Co-Codamol didn't even touch it, plus it can only be taken for a few days in case you get addicted!

Life at the moment seems good though. It might not be "perfect", but when is it? I haven't had the dreaded MS hug for a while (spasms in my rib cage muscles - excruciating), and I even have a few trips planned. I think the latter is important, as the last few years have taught me, and last year especially, life is too unpredictable, and you need to squeeze as much enjoyment out of it as you can.

Well, that's it for now, I thought a catch-up blog was apt. Next time though, I will carry on with a blog based on adjusting to the social problems attributed to MS and other disabilities & illnesses.

Ciao for now...

Jo x

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