Thursday, 26 July 2012

Diseasey Street

Ive been thinking a lot about how my relationships have changed since I was diagnosed. It's been over 2years since my 'official' diagnosis, and there's been a noticeable shift in my relationships since. It's been gradual, but becoming more apparent as I settle into my life avec Crohn's.
Some people have made a point of removing themselves from me as time goes on, perhaps because they are uncomfortable in talking about my illness, it makes them feel awkward or they just don't want a 'sick' friend anymore. Or maybe it's just a get out clause after having spent years being trapped listening to my patter. Whatever the reason, its odd.
At first I found this hurtful, now I don't. I feel sorry for people who have difficulty in dealing with someone else being ill.
At the risk of sounding like a bad charity advert, most people at some point in their lives will have to either cope with a serious illness of their own, or deal with a loved one struggling with it.
It's heartbreaking to watch someone you care about decline, it's torture if you love someone and there is absolutely nothing you can do to help. The answer never lies in running away though. It means it's time for you to locate your balls and remember you are now 'on', it's time to step up and show you can be a big comfy blanket for your loved one to rest on when they have spent 5hrs solid throwing up what's left of their insides. Not a nice image is it? No. But you know what's even worse? Being the person doing the throwing up and doing it alone.
Don't get me wrong, this post isn't solely focused on me, I know others who feel like this, times 100.
I am lucky to be surrounded by an amazing man, fantastic family and people who care and make me laugh and help me remember I'm not just "'her with the Crohn's".
This goes for everyone coping with a crohnic illness, mental illness or anything that makes you feel less of yourself; YOU are still in there, a wee bit more 'diseased' than you were before perhaps, but still there.
That's nothing to fear, fear only the wrath of wronging a person constantly fighting a brutal disease daily. You have NO idea what you are dealing with.
And therein lies the problem.

Sunday, 15 July 2012

Don't Know What You've Got 'Til It's Crohn..

Hello ladies and gentlemen, cats and kittens. This post is a bit of a bitch to write. It also feels a bit hypocritical, as this is a blog about ME and MY illness and I'm writing a post about people posting about their problems. But if you choose to read further than this line then obviously you want to so thanks for that.
So, anyway, I was inspired to write this post due to the recent influx of endlessly negative posts i've encountered on Twitter, Facebook and other social networking sites (i repeat SOCIAL NETWORKING - remember that as we will come back to that later). It seems people want to use these sites as forums to spread misery to a wider audience, isn't that nice? NO its not. Its boring. Very boring, and dull.
Now I am by no means perfect, I'm sure there have been times I have tweeted, or posted a status not particularly inspiring or not gut-grabbingly hilarious (although I'm struggling to remember it) as that's human nature. Human emotions mean we are a big melting pot of  feelings, sad, happy, confused, angry etc etc to infinity. Its completely understandable that we have 'off-days'. What I'm referring to are those people who never have 'on-days', and choose to share that with the rest of us.
Life is super hard, people die everyday from old age, in abject poverty, in war-zones and by the hand of someone else. People are suffering RIGHT NOW from life changing illnesses and the desolation of losing a loved one or from crippling anxiety or depression. That completely floors me, I hate it and I want to cuddle each and every one of them and tell them it will get better. But as we know thats impossible, I have nowhere near enough air-miles for a start and my passport hasn't been renewed since 2007.
What people need, and want is to be reminded that there is happiness and good in the world and things can, and do get better. If you let them. If you try. Because we are all in the same boat. Some people have a harder time than others - this in itself is all relative - if you have never experienced pain or misery, the passing of a beloved pet may break you, whereas someone who has lost the love of their life, or a parent may grieve then flourish, happy with their memories and go on to lead a happy life.
I've never lost a parent. My mum and dad are amazing and I suppose I still imagine they will always be there. I know it will hit me very hard when they go, this is understandable, I grieved for a long time over the loss of my Granny Peggy who was an incredible wee Scottish woman, hilarious, gentle and full of fun and wisdom. We adored each other and losing her toughened me up to the world. Not in a negative way, just made me aware I'm strong enough to cope. That was her legacy for me.
I've digressed a bit, my point is that social networking is somewhere to share knowledge, share jokes, chat and make friends, HAVE FUN. All positive things. I for one use things like Twitter as a form of escapism, I love reading all your funny tweets and that you take the time to read mine, and I adore chatting to people from weird and wonderful places all over the world.  Its also been an endless support to me since my diagnosis, a place i can post a question about Crohn's and get over a 100 replies form amazingly helpful and considerate fellow Crohnies. FUN + LEARNING = AWESOMENESS.
Someone recently called my disease a "melodrama". I'm not going to name names as I'm not a horrible person, and besides, that person is tied up in the boot of my car now. Show a bit of respect for the dead, please. This person in a round-about way accused me of using my disease as a way to gain popularity. This made me angry and sad and depressed and then unbelievably grateful that I don't see life that way. I see myself as someone who tries to flourish and enjoy my life IN SPITE of my illness. You, my darling boot-dweller, and all the other negative nellies out there who think this is the way to lead and happy and healthy life, are deluded.
Please try to remember that life can be an amazing thing - for a start you are ALIVE. I almost wasn't, so please relish that and try to get out from behind your keyboard and see that for yourself.

Thank-you for letting me rant x x

Thursday, 12 July 2012

Crohned To Perfection

I've suffered from arthritis since I was 25. This started as a swelling in my knee which I instantly, and somewhat misguidedly, put down to having fallen over in high heels at a party the weekend before.
After a few weeks and more swelling, and LOTS of pain I realised it was clearly not a result of a tipsy stumble. I tried several anti-inflammatory gels and drugs, ice packs and bandaging the swollen joint up, to no avail. After getting to the stage where I was having difficulty walking, I stumbled up to the doctors, to be told to stick frozen peas on it and I'd be fine. I felt humiliated and stupid for having been made to feel I'd wasted his time with something so trivial. I licked my wounds and went back a few days later to see another doctor. Then another, who eventually referred me to the hospital for an x-ray. It was confirmed pretty much straight away it was arthritis and I was pretty surprised and disappointed it wasn't something easily fixable.
Arthritis is one of the first warning signs of Crohn's Disease. My body was trying to tell me from the get go what was to come but I had no idea. Not everyone with Crohn's suffers from arthritis, but it's very common for patients to complain of aching muscles and joints.
I find it very frustrating when my knee plays up - mainly in the damp weather (which is a LOT of the time in Scotland). It makes me feel old. I get bugged at the fact there is very little that can offer relief from the pain. It sometimes stops me from doing things I love. Like dancing. Or swimming. Or sliding across the kitchen floor with a brush like early '60's Elvis :(
It's not the worst part of my Crohn's disease. That would have to be the gut wrenching AGONY. But it's up there with the most frustrating of the symptoms. I think the fact that my body malfunctioning has more of a psychological effect than anything else. Yes it's often VERY painful, but the real pain is my fun-button being turned off. (Not a euphemism) (Although it is a good one) (Might use it)
My creaky swollen knee may currently resemble Phil Mitchell's head growing out of my leg, but eventually it will get better.
If not hopefully it will at least shrink back to the Richard O' Brien look I'm used to.