Saturday, 29 September 2012

Pain in the Gut

Along with all the other incredibly enjoyable symptoms of Crohn's Disease, one of the main one's i've been dealing with lately is joint pain. For me this seems to go hand in colon with fatigue, so as well as feeling sore most of the time, i'm also battling the zzz's the majority of my day.
The main pain I suffer from is on the bottom half of my body, from my hips, to my knees to my wee footsies. I also get a lot of back pain, and as my job means I type all day my fingers and wrists seize up too. 
This seems to be a common occurence for many Crohn's patients so I am by no means alone in my gripes. 
All this pain and annoyance is irritating, but when combined with the other symptoms associated with the disease it can leave you waking up feeling you've been ravaged all night. Without any of the satisfaction. 
Conventional painkillers have ZERO effect on me, proabably due to becoming immune after popping them like sweets over the years. Stronger pain relief tends to make me queasy as my diseased guts kindly reject any help they are being offered, and things like Tramadol and morphine send me into a blissful coma where I am barely capable of quoting my own name. 
So you see it's difficult for people like myself to manage this pain. Especially when you hold down a full time job and have a cat and a 36 year old man to rear. I can't take anything too strong while i'm working as I have to be at least a little aware of my surroundings and my own name, and anything too weak and i'm a doubled-up wreck attempting to remain upright at my desk. 
Having a crohnic illness also means exactly that; being crohnic means it is not going away and therefore not easily remedied. It is a difficult balance of finding the right medication and pain relief to suit each particular body - not an easy task for any doctor. With me and most Crohnie's it's a case of trial and error. In my case LOTS of error along the way. I am now on a drug trial, which is doing well to keep my symptoms under control, but the pain in my joints and guts is so unpredictable that regular meds just don't cut the mustard for this Crohnie. 
The past few days i've found it quite a struggle to walk and my legs have felt like lead - walking like you've been sitting on a horse for the past 48 hrs is NOT a good look. Trust me. Even Clint Eastwood would probably knock me back at this moment in time. 
Anyway I have to go before my hands turn into claws. I have an romantic evening of smearing myself with deep heat planned. x

Sunday, 16 September 2012

Diseasey Like Sunday Morning

I'm sick.
Yes, of course I'm 'diseased', but I mean right now at this very moment, I have a bug. A horrid throat infection-chest infection-queasiness causing-dizziness making-headache inducing bug. This is probably something I could shake off  in a matter of hours, but thanks to my horrendously useless immune system it's taking slightly longer than I'd like. Annoying. It has drained me of any energy I had and reduced me to a withered hag with bags for life under her eyes who squints at a glimmer of daylight.
As I said, annoying.
My beloved told me earlier that I'm "whinging" and if I'm going to continue maybe I could "do it in another room" - of course this was a joke, (it WAS a joke..), and although I took it in the manner it was intended, after bashing in his brains in with a frying pan, it got me thinking about how people on the 'outside' of my disease feel.
I've touched on this subject before in my blog, and it's one that I consider quite regularly. I am forced to, mainly due to the fact that living with Crohn's can be so unpredictable that I often have to let down others and cancel plans. Sometimes at the last minute, and sometimes DURING the actual event. This makes me feel crap. Literally and otherwise. I hate letting people down, and no matter how cool about it people are I know its disappointing for them too.
I try to limit the amount I talk about my disease amongst my friends and family. Of course, knowing what they know about me its obvious and wonderful that they will always ask, but I never want to cross the line from concern to pity. I don't want to be the 'sick one' and don't want the focus to always be my illness. My colon gets more than enough attention as it is.
Most of the people with Crohn's I know or 'know' online, have a similar view to mine. They are all so much more than their disease and try to live life to the full. This isn't always easy, as Crohn's gets in the way of a lot from time to time. It can affect you physically and mentally and make it difficult to negotiate new relationships and even maintain current ones. At times I struggle to know how much is too much in talking about my disease. I don't want to bore people or make them feel uncomfortable, but now after living with it for a while i've come to establish who is willing to listen - and often more importantly, who will tell me when to shut up about it.
People who love me want to know I am well, and also want to know when I'm not so they can listen and care for me and offer help where they can (usually through doing both of the aforementioned).  
I don't want people to pussyfoot around me and I certainly don't want anyone to feel pity for me. So I often walk a conversational tightrope, one Crohn's related anecdote too many and I see a friends face glaze over, one too little and I get tangled up in explaining the reason I'm not talking about it ISN'T because I'm actually dying and trying to keep it quiet.
So please, if you know someone with a chronic illness, remember chronic means exactly that - it won't go away. So be patient if that someone wants to tell you how sore or queasy they are (AGAIN), and vice versa, bear in mind the person opposite you might have something equally as crap going on in their life.
Now if you'll excuse me, I have to take my boyfriend to A&E.

Thursday, 6 September 2012

IBD & Sympathy

I had a very vivid dream last night that I was back in hospital. It wasn't a nightmare, just a dream. Not entirely unpleasant, perhaps now because I associate hospitals with making me feel better. Now that I know what's wrong with me that is. A few years ago, pre-diagnosis, this was very much the opposite.
I think the dream spawned from the amount of Crohnies I've spoken to recently who are, or very recently have been, in hospital for Crohn's related issues.
Obviously I am only too aware there are often complications and problems caused by Crohn's that will and do require hospital time. But when it is happening to someone I know (as well as you can 'know' someone through social networking), it hits home. My colon aches at the sheer thought of it and my heart is heavy for them.
The bravery of my fellow Crohnie's never ceases to amaze me. So many people still don't understand the often horrific and gruesome symptoms we have to deal with, inside and outside our bodies. Surgery is incredibly common and complications more-so. This is not me trying to scare people into submission, just stating the facts. Trying to get across that Crohns isn't a 'tummy upset'. It's an incurable disease that can affect every part of the human body.
Although I myself have been relatively well since my operation last year, I still suffer often crippling symptoms and struggle to eat. This in itself is a pain, and can be incredibly frustrating, but I thank Bowie (God) that I'm nowhere near as ill as I was prior to my op. There are people of all ages going through what I went through right now and this makes me sad. They are struggling like I struggled.
The most common statistic about Crohn's patients post-op is that they will most likely need surgery again within 3-4 years of the first. This worries me a lot. Time flies, and the thought I'll have to go through that again is a depressing one. However some people can go a lifetime without ever having to slip into an ill-fitting hospital gown again. That's the option I'm aiming for. I look terrible in white.
I hope anyone who reads this and is suffering now can see the light at the end of their colon. It does get better, and when it does make the most of it. You may be diseased but your crumpled up insides are filled to bursting with awesomeness.

Yes I just said awesomeness. X

Sunday, 2 September 2012

Just The Crohnic

A major issue I have in living with Crohn's is tiredness and general lack of energy. This would be fine during a flare-up or when I've been hit with a bug to deal with on top of my disease, but this is all the time. All day every day.
This is a common complaint amongst Crohns sufferers and there is fairly little to be done in attempt to combat it. Most people living with any Chronic illness would tell you that day to day activities tend to take a lot more out of you than would do a 'healthy' person.
For me it seems no matter how much sleep or rest I get I still wake up feeling shattered. Meaning the simple task of dragging myself out of bed becomes a mammoth one. Not uncommon amongst the human race I hear you cry, no one likes getting out of bed. What I'm talking about is not the idea of getting up and heading to work when you would ideally like another couple of hours before facing the day, I'm referring to the physical aspect of getting up and ready. For me this is one of the hardest parts of the day. I usually wake up with stomach cramps, desperate for the toilet (another thing I have to factor in us how long I may have to spend on the porcelain before I leave - meaning I get up half an hour earlier than I have to).
The thought of getting on a bus and working all day is hard to bear when you wake up in pain and feel like you've been pulled out of hibernation 3months early.
I travel to and from work on public transport, followed by a 15min walk. This travelling tires me in itself, then at I head into work and am mentally shattered by the time 6pm finally rolls round.
To someone without Crohn's or any other form of Chronic illness, all this may sound a tad dramatic or even silly to complain about. What I'd say to you is, if you have felt like this once or even twice, remember how awful you felt, how much it took out if you, now imagine that everyday, for the rest of your life. Quite a depressing thought eh?
The fact that I'm constantly tired and have zero energy affects me not just in my professional life but also in my personal. I often have to cut short evenings out or let friends down if Crohn's strikes. I hate this because it upsets me when I feel the disease is getting in the way of me living a 'normal' life, or when I'm stopping the people I love from having a good time.
It's easy to say, and has been to me, that when you are 'well' we should all try to focus on that and enjoy Crohn's-free moments, but when your immune system is shot so badly that something as measly as a summer cold floors you, or walking 2minutes to the shop has you clinging on to a handrail for support, it's hard to forget.
I now have to force myself to remember I can't do certain activities without agonising following. I can't carry anything heavy (this is where online food shopping comes in very handy) and I can't walk long distances without breaks. I can't Hoover or cut the grass without feeling like someone is stretching my insides to snapping point. Annoying, but thankfully I live with another human who can pick up the slack here and there. And a cat to helpfully ensure we will always need to Hoover.
The main tips doctors and health professionals advise are to eat healthily (difficult for most Crohnies), sleep well (hmm..) and get plenty exercise (have you read any of what I've just said Dr? eh? EH?!). Also many consultants advise B12 injections to help boost the immune system. Effective but only for short periods of time.
Ive found only doing little bits in small doses has been vaguely effective in allowing me to pull a full day without falling asleep on the bus. Don't push yourself and don't assume your diseased body will allow you to do what it may have done before. That said, enjoy life and don't hide yourself away! Don't listen to cynics who have no understanding or comprehension of what Crohn's does to us inside and out.
I know I don't ;)