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Monday, 28 September 2015

Living with chronic pain

This week is Invisible illness awareness week and I wanted to post something to show my support and help spread awareness, I hope you enjoy this extra post:)

As I write this I have a hole in my arse.  Well, technically two, but one more than usual.  And I suppose if I were using medical terms it's the upper right quadrant.  This morning at 8:30 I had to have intramuscular pain relief which I've had to have more times than I can count over the past few years.  It's the only thing I found to be effective when I'm in the full throes of a migraine, which is one type of chronic pain I suffer from.
That's what this post is about, chronic pain.  No this is not about pity or sympathy.  I want to talk about my experience and if anyone can relate to that, if anyone finds what I have to say helpful or interesting then that's great, but this most definitely is not about trying to gain sympathy.

I can't remember a day in the last 16 years when I wasn't in pain of some sort.  The last few years the worst pain has predominantly been in my head and feet, before that it was arthritis in my hips and the beginnings of my migraines.  Then there was a period of a few years where I had several injuries (joy of osteoporosis) and I was either on crutches, in a sling (don't read a book as you're walking along, you're not Belle) or in a splint (don't run in 6 inch heels across a road when having a panic attack), along with the general wear and tear bone pain and ongoing joint pain that I have suffered from since I first became ill before that arthritis in my knee, and so on..... and on and on because it does go on and on like that. Suffering from Chronic pain to put it simply, sucks. It's bad enough suffering from one type of pain but when you suffer from several types and there's no relief, even if one eases there's still no pain free days. At least not for me. Especially with my feet as the pain is there 24/7 and it fluctuates (those damn electric shocks). I've done a separate post on Peripheral neuropathy and what that feels like as I think it's important (If only to scare the shit out of people into getting help so they won't have to go through this).

It first started with viral arthritis, that was my first official diagnosis. Although I remember feeling ill back when I was at primary school. I'd feel dizzy and tired, just generally lethargic with extremely painful bulbous glands.  But back to the arthritis at 14.  From that moment on I became a chronic pain sufferer, the whole of that year I was on ibuprofen and paracetamol like clockwork to try and get the pain under control (I was also suffering from glandular fever and ME which I talk about below) it didn't work, nothing helped.
 I became bedridden and developed contractures from inactivity. But I'd still carry on taking the tablets under Drs orders. I was already being told that I was faking being ill to get out of school so to start to argue regarding medication, especially as I was so weak, wasn't wise. Back then ME was very misunderstood as there was no specific test for it and as the Drs knew I was being bullied at school they put 2 and 2 together and came up with I think you need to go back to medical school you incompetent pricks. Positive blood tests for both viral arthritis and glandular fever showed I was sick and in pain but oh I'd obviously have to go that bit further wouldn't I because everyone teenager wants to be helped in the bath by their mum.
 Over time, the arthritis got better as it was directly linked to a viral infection, although my joints and the strength in my legs after the contractures have never really recovered.  
Back then I used to be asked on a pain scale how bad things were, I thought things were bad.  God I was wrong.

"Ow my head"
I've spoken about my feet a lot, but one thing that I haven't spoken about much is my migraines.  There's a reason for that, and that's because you hear the word migraines and you just think headache.  "Oh yeah, I had a migraine the other day too".  People think it's just a headache.   The word gets thrown around in a similar way that people throw the word depressed around when someone's 'a little bit sad'.
My first major migraine I had a seizure in the bathroom and my head was repeatedly being thrown against the tiles on the bath, I was on the floor, as I'd just vomited up fecal matter (yes that is what you think it is).  I was admitted to hospital and they tried to get it under control, but they gave me opiates which made it worse.  Since that day I've been on a preventative medication (it's an epilepsy medication used to prevent migraines) to try and keep the attacks to a minimum, my dose has slowly gone up till I reached the maximum dose and I'm now over what's safe for migraine management.  The side effects include hair loss, bad skin, appetite suppressant, changes in taste buds, a complete aversion to foods you used to like.  Since I started it I've lost over half my hair but I haven't had an episode like the first one *touch wood*.
When I get a migraine now so long as I get the injection asap it won't develop any further. Sometimes I can get three in a week #sorearseforcharlotte, which normally means my preventative meds needs to go up. Sometimes I can go six weeks without having one.  For someone who's terrified of needles I have now become fairly used to them, although I do always have to have them on the arse cheek that's numb. There are some positives of incompetent Drs.....
  I've been prescribed morphine and fentanyl, the strongest painkillers you can get neither of which touch the pain. They just send me loopy and make me talk shit. Seriously the last time I was high I kept bumping into a wall (no spacial awareness) and was telling my mum every single word or thought that came into my brain. Good or bad.
When I have an actual migraine attack, which to me is very specific, it starts on the right is centered in my eye working backwards, once an attack has started it will only get worse until I have my injection. Drs/paramedics/nurses have tried playing a game of maybe it'll go away lets see if we can try something else, usually suggesting the 'shall we stick it up the arse method' to which you can imagine my response (needle.in.bum.not.tablets.up.bum.now.please), or leaving me writhing in pain only getting worse. It was fun getting them in hospital last year with the incompetent half wits looking after me, the first time they left me half the night, then they lost the injection, then couldn't find a Dr to sign for it, then bought the wrong injection by this point I was almost passed out in pain. After the pain passed it's fair to say I let them know in a very Charlotte way, it's not a headache, don't offer me parafuckingcetamol (I'm not asking for an injection I've been on for 2 years for shits and giggles), have the injection on the ward, if not I can provide my own. They didn't cock up again.
Well apart from the whole I went in able to walk and couldn't even stand when I came out, refusing to give me an x-ray when I knew something was wrong and it turned out I had arthritis in my ankles, calling me fat and not noticing I didn't eat for the entire 7 weeks I was there. Deep breathe Charlotte. At least they apologised.....oh wait...

On top of the migraines, I also have a headache on a daily basis. Constant. It's been like that all year and I don't know what's triggered it off, my neurologist is baffled. Baffled enough to give up on me:( I had a virus in February which I thought was a migraine starting, but the pain felt different I was having an injection every day and it wasn't touching it. It was by far the worst pain I've been in, I had blood tests and my Dr wanted me in hospital to get it under control, but I knew they'd just give me opiates which don't help. I was in agony for about a month lying in the dark unable to move my head at all. It was absolutely horrific. Everyone has a weak spot that gets hit when they are ill or run down or stressed or a random virus like this was some people get a dodgy stomach or sore throat or ear ache, I guess mine is my head. And my glands I have permanently Bulbous glands anyway, one whiff of a bug and I'm a bullfrog.


ME
 From when I first became ill and I saw my first Dr, the immediate assumption was that I was faking being ill to get out of school and that is what every medical professional wrote down in my notes, believed and told my parents.  In hospital I was alone and doctors telling my parents one thing and me another.  Telling them that I had finally admitted that I was faking being ill to try and bring a divide between us. Then when I developed an ED and had to be hospitalised the doctors refused to treat it, instead focusing on the ME as that was more interesting I guess?   I spent nine months as an inpatient after becoming critically underweight, I went in to go onto the eating disorders program but all they ever talked about, all they were interested in was getting to the bottom of why I was faking being ill to get out of school.  This created in me a desire to get out of hospital get away from these people and try and recover from the ME so I would never have to see any of those fuckers again.  So I could walk and dance, at this point I hadn't walked as I was in a wheelchair for over a year.  To me, I knew I could live with an eating disorder (no one had seemed that concerned over the fact I was starving myself anyway, more fuel to the 'everyone wants me dead part of my brain') but I couldn't live and do things, with ME.  Or so I believed.  ME had created so much friction it almost disgusted me.  To me it had to be beaten, I had to be free of it. To me having ME was seen as having a weakness. I had to be 100% recovered from ME to get Ruby, I had to be free of this illness that so disgusted everyone around me. Made everyone so ashamed. More so than my eating as it was the first illness I got and it was something that no one believed I ever actually had in the first place. The illness that ha stopped me from having a second chance at school and taking away my chance at an education

Deep down I now know I never was free of it.  I was pretending to myself that how I felt was 'ok'. Living the last 15 years cripplingly exhausted.  An exhaustion that never leaves your body.  Tired doesn't even cover it.  I can't count the number of times that I would go to Tescos and have to wait in the car for half an hour, the thought of walking round a shop for 10 minutes, too much.   When I finally pulled it together enough to go in every step further depleting the little energy I had, already anxious at being out, whatever injury I had at the time getting more painful. It doesn't matter how much sleep you get, how much you do or don't do.
I'm so used to being in bed or horizontal that  just the thought of sitting up can be exhausting, even if I make a conscious effort to sit up half an hour later I find myself vertical I'm like shit, how did that happen?

Living with mental illness is hard, if it can even be called living. Living and coping with the stigma attached to it is hard. I don't only face it from strangers and medical professionals but from the people around me.
Having to battle that on top of living with chronic physical illnesses is tough. Especially when they're illnesses that essentially you can't see. People can hear me say I'm in pain, but they don't understand the level and extent of pain I'm in. (Oh She says that the slightest touch causes extreme pain she can't really mean that so hey I'll just throw something on them.... oh shit now she's screaming what an overreaction...) They don't understand that the level of exhaustion will not just be solved by a bit of sleep or a burger and that what they perceive as me being lazy is actually me completely wiped out as I've exhausted the little energy I did have.
Just because someone has an illness that you can't see or understand that doesn't make it any less real.
Having to live with a chronic illness, chronic pain is hard because you're not only dealing with the pain, with what you HAVE, but what you DON'T have. The life you don't have, the events you miss out on, the things you can't do because if one thing is playing nice on the pain scale, you know damn sure something else is going to be a little shitbag. I get a lot of shit from Drs saying what do you expect you're anorexic, especially regarding my feet (justified) but they forget I WAS ILL WAY BEFORE I DEVELOPED AN EATING DISORDER, I've been diagnosed with arthritis unrelated to my ED, they don't really know what's behind my migraines but an easy option is obviously the ED.
Suffering from an invisible or chronic illness and pain is hard enough without the stigma attached. Don't let anyone tell you how you feel.


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