Thursday, 21 April 2016

Chronic Illness And OUCH!!

Ok, had a lot to think about today .... I've been thinking about chronic illness, it triggered off today when I went to see my mum and my youngest son asked me why I was walking like I'd been in a car crash!! :) .... Thing is, I'm always in pain to a degree, but for some reason (I'm putting it down to being back at work after quite a while off) I'm in even more pain than usual, in fact this is the worse I can remember in a while .... I'm still going to work, but in the morning I have a long wait before any hope of the painkillers doing their stuff so I can actually get out of bed ... If I sit for too long I seize up and when I try and move it hurts to the point I want to just scream and cry a bit (no drama intended) .... But if I say anything like oh I think it's the sarcoidosis or I think it might be the fibromyalgia or I think it might be that I was left untreated for too long with pernicious anaemia, I'd get caned for it verbally for sure ... But why? ... There seems to me to be a stigma attached to chronic illness and/or illness no one has ever heard of .... We've all heard of cancer, right? ... We all appreciate the gravity of how devastating it can be .... But just because the illnesses I have aren't as well known, it doesn't mean we should immediately assume that because we haven't heard of them, that they're any less serious in ways .... Since I've been a member of sarcoidosis support groups, I've lost count how many of us have died ... Sarcoidosis is dangerous ... It's just no one appreciates that as first off, they've never heard of it, second of all, it's not cancer so it's ok .... Right? Third, some documentation out there in terms of sarcoidosis is incorrect, most cases do not just clear up without medication after some years and careful monitoring by your doctor and/or specialist... I'm not trying to detract from the seriousness of cancer, no way ... Nor am I suggesting it's better to have cancer, no absolutely not .... But what I am saying is when people hear the dreaded C word, they fully understand the severity and seriousness of the disease, mention sarcoidosis, for example and it's a totally different response and approach .... After all if it's pretty much unheard of, it can't be that bad ..... Can it? .... Actually yes it can, people also believe that when you have fibromyalgia, it's all in your head ... Again, that is incorrect .... But there goes that stigma ... That "it can't be that bad if it's not cancer" attitude we are faced with from many other people ... Let me tell you how bad it can't be ... There's no cure for sarcoidosis, there's no treatment guaranteed to bring you into remission ... Remission doesn't only apply to cancer patients, it applies to someone like me too .... Sarcoidosis is very cancer like in it's behaviour, it will thrive upon and destroy organs and tissue, to the point these organs and tissues are damaged and will not function properly, the results of which can be fatal .... Plus the pain ... Pain is a prevalent symptom in sarcoidosis, it is also the main symptom in fibromyalgia ... So when I am walking like I've been in a car crash, try and understand that I, along with many others in the same boat as myself, do truly feel like I have been in a punch up in a bush all night with John Cena ... It's excruciatingly painful at times ... We don't mean to complain all the time, I certainly don't mean to ... Nothing would make me happier than to wake up just one morning totally pain free, leap out of bed and get ready for my day feeling good .... But many like myself, if we are fortunate enough to get any sleep at all, will feel like complete shit the next morning, won't be able to leap anywhere and if we do leap anywhere it's 6ft off the floor in agony because we did try and move without taking pain relief an hour before .... I think we really do need to work hard to try and alter society's perceptions of the chronically sick .... They think we are moaners, complainers, skivers etc ....... No, we aren't ... No one in their right mind wants to be sick and in pain all the time ... I would love nothing more than to be a fraction of the person I once was before 2005 .... 2005 was the year I started on the slippery slope of chronic illness .... Do you have any idea how much I long to be who I once was before this? ... How much I look at some other people and just wish I could be healthier so I could keep up and do so much more than I am capable of now? ... How blessed I also feel to still be here? ... As I said, we aren't all moaners and complainers ... We do appreciate what we have, despite it being so potentially debilitating .... We are still grateful, still blessed to be alive and still trying to keep up as best we can, do what we can to the best of our ability .... So I'll finish off by saying, yes it's not cancer, but no it's not any less serious at times .... Just because you've not heard of something, it doesn't mean it's not there, it doesn't mean it's not serious .... It just means it's less heard of than something more common ... On that note, I'm taking my highly pained self to bed ... Please try and understand someone like me, not all of us want to be sick ... Not anyone I know anyway, certainly not me ... Thank you for reading ... Much appreciated ... Goodnight and sweet dreams xoxoxox

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