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Thursday, 26 November 2015

"Oh, but you look well" vs "You look well!" - Looks can be deceiving...

It's been a while since my last blog. I always have excuses, this time, I just couldn't be bothered! I've had studying to do, which I'm majorly behind on, and I'm hopefully switching meds again - all of which is causing me stress, but more on this later.

Anyway, as mentioned in my last blog, here is a blog on the social problems I've encountered with having MS.

Having MS really has made me a more thoughtful and less assuming person. In the days prior to having MS, I would be considerate on the train or bus, if someone obviously needed a seat. However, if someone who looked well wanted my seat, I'd probably be inclined to think they were lazy, or if they're female, then pregnant, so therefore needing a seat.

If I was in a medical waiting room, and my seat was nearest the door, but a seat was available next to me, I'd assume that whomever might need a seat could sit there. However, even moving up one space can help, as being close to their destination saves on energy, and if they have balance problems, could mean less objects/people to potentially trip up over.

I'd assume that someone who seemed to be walking okay one minute, but then produced a fold-up stick, like some kind of ninja weapon from their bag, would either be strange, or at the worst, have a bad knee.

I rarely thought for one second that any of these people could have a potentially serious and debilitating health condition, for the most part where the symptoms are invisible to those around them, but if you could see their pain it would be more obvious than with someone with a broken limb.

I don't blame these people too much, you can say that they are small-minded, inconsiderate, selfish - I could go on and on. I think it depends on how we've been brought up, and whether you know anyone with a chronic health condition.

Growing up, I was given the impression that anyone who moans too much is a hypochondriac. When I was unwell, I generally just got on with it, and when I was really unwell, then my parents would know. I knew a few hypochondriacs who would complain at the slightest issue, so it was a case of suspected crying wolf if they were actually unwell.

I was also told off if I was ever deemed to be lazy, so I tried my best not to be. I think the older generation, whose parents and grandparents could have served in both World Wars, learned to toughen up and not to complain.

So when a young person who looks perfectly well to them, is needing a seat, they probably think that they're lying. I think this view has rubbed off on many British people, and I can vouch I was one of them.

People think to be disabled you need to be in a wheelchair permanently. What the general public don't realise is, that you don't even need to use a walking stick. I feel that I always have to use mine in public, just because it's easier, but the reality is, I do have to use it most of the time.

I have a Blue Badge, and get nasty looks from people, even when using my stick, it annoyed me at first, now I've learned to ignore them. I've also learned not to judge other people parked in Blue Badge bays - as there was once I forgot to display my badge! Forgetfulness can happen to anyone.

People say to me: "Oh, but you look well", in a tone of voice which I interpret to be: "You're fine." There is also the cheery: "You look well!", meaning: "You look great!" I guess we're brought up to think that when someone is unwell, it must be visible

Another thing people say to me is: "You can park anywhere with your Blue Badge!" or "You get loads of free stuff and/or lots of money because you're disabled - you're lucky." First of all, no, you cannot park anywhere with a Blue Badge, council Pay and Display Bays we can, plus some Double Yellow lines, but not all. Most private car-parks we have to pay, however some allow us to park for free - which although isn't compulsory, nor expected, but with some disabled people on a low-income, who spend most of their money on care, it could mean an extra £5 towards food, or even a very rare trip out.

We also don't get loads of free stuff, there are some concessionary discounts for instance, but that is up to the organisation concerned, and very nice of them too. Companies might give concessions to help out, as those on DLA/PIP and/or ESA are mostly on a low-income. Also, no, we are not lucky - most of us would trade it for good health, and thus being able to earn a decent living.

I think aside from people's comments assuming I look fine, and financial issues, I can brush it off if it's people I don't know, however it really hurts when it's a friend or family member who doubts you. It's slowly getting better with time, as I know it's hard for people to understand, especially if I seem cheery - this is called putting on a front: as nobody wants to be around a moody person! Most of the time I want to lie in bed and sleep off any aches & pains, and it's a slap in the face when no-one listens to me, or makes a face doubting me. I'll say no more.

One last thing, I've had bad Liver blood test results back on and off for the past year, especially over the past six-months. I stopped taking Gilenya last Friday, so nearly a week with no meds, I'm feeling pretty rough. I should be going on Lemtrada/Campath (Chemotherapy), blood-tests dependent, February time...I'll write more on this another time.

Ciao for now,

Jo xoxo

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