Thursday, 17 May 2012

Gin & Crohnic

Since my operation last year, it's become more and more apparent that I can no longer 'handle my ale'. I don't really know if I can call this is a benefit or not yet. It means a cheap night out for me I suppose.
I've found, through rigorous tests, (your welcome by the way), that if I drink wine I am laid up for hours- instant headaches, queasy and stomach crunching pain. So I generally try to avoid it. I love that; "try to avoid it" like it's chasing me around ASDA screaming "Pick me! 2 of me for a fiver!" In my head that's what happens anyway.
Spirits, which usually I'm fine with, I can now have about 2 of then I'm feeling as if I've been on it all night. This can be slightly embarrassing if you are not with friends and people who understand, others just assume you are a silly drunken fool and any protests to the contrary ("I've HONESTLY only had TWO!") sound trite, and funnily enough like the ramblings of a silly drunken fool.
Here comes the science bit; the lovely surgeon last year took away a bit of my insides - this in turn means I lose lots of lovely vitamins, zapping my energy and leaving not a lot of room for alcohol to set up home for the night. Yes not very scientific I agree but it makes sense to me.
Obviously depending on the type of medication or treatment you are on for Crohn's this must play a part in how much you drink. For me the drug trial I am on allows for alcohol to be consumed 'in moderation' - being Scottish I'm not entirely sure I know what that means.
I don't feel I'm at the stage where I want to stop drinking altogether. Yet. Occasionally, socially, I don't want to feel I have to sit stone cold sober listening to banter I probably would be finding completely hilarious had I had a couple of vodkas. I realise this all makes me sound like a drunk (I really don't drink that much).
I've not had any major issues with alcohol so far - other than wine which I'll just have to remedy by wearing a blindfold when visiting ASDA. The only problem has been my ability to safely consume 2-3 without completely flooring myself. Or ending up on the floor, literally. So I'll just have to take my own advice and drink only 'in moderation', which, as I understand it means 'a brewery-full'.*

*it doesn't silly! It means vodka on cornflakes, a hip-flask to work and a half bottle 3times a day. Obviously.

Thursday, 10 May 2012

Crohn Fishin'

People with Crohn's, or anyone who has a Crohnic illness for that matter, tend to spend a fair bit of time in hospital.
As my illness is so unpredictable, it's essential for me to be prepared if the need to be admitted to hospital occurs. If I'm told to ward this way, I want to be ready.
If I'm not able, I want to make things as easy as possible for my partner or whoever is around to be able to get what I need to me as soon as possible.
What I mean by this is that I have a Hospital Checklist; a list of essential items for a stay in hospital. It really is very handy. And not at all incredibly anal..
Before my surgery, I was in and out of hospital so much that I developed a routine of keeping a pre-packed case on standby.
One of my top tips for hospital packing would be to pack quickly and precisely - you don't need enough for a 3week stay in the Caribbean . Remember you will most likely only have a tiny cupboard in which to stash your bounty.
Think 'dirty weekend', with the 'dirt' being replaced by 'hand sanitizer'.
If you, like me are partial to a hospital stay, and have been stamping that hospital loyalty card with overnight visits, (one more stamp and I get to take home a hot nurse!) you should heed my top tips for hospital packing; (see diagram- in no particular order). Men: you may want to modify some of these items to suit your own particular..needs;

1. Book. Hospitals can be boring places, reading material can wile away sickly hours. See also; Magazines, Puzzle Books, Jazz Mags. If you like Jazz obviously..
2. Pants. You can never have too many clean pairs of drawers with you.
3. Pyjamas. I usually pack 2 pairs initially - I usually have a fever in hospital so sweaty pjs are not pleasant. I favour long bottoms for warmth and vest top for ease of application of cannulas, needles, etc. Nothing too low cut, unless you are trying to seduce a doctor, which I wouldn't advise.
4. Hairbrush. To brush hair.
5. Deodorant. To deodorise with.
6. Pills. Always remember to pack all your meds.
7. Slippers. Hospitals have cold floors and I have cold feet.
8. Charger. I would go insane if my phone died. Also I think my mum would worry herself into a frenzy if she couldn't phone me.
9. Headphones. Thank-you for the music.
10. Make-up. Ok not an essential but a little blush and mascara can help to make you feel a little more human, and it's a nice way to try to build a routine as you would at home.
11. Lipbalm. I literally would not survive without at least 2 lipbalms on my person at all times, literally.
12. Toothpaste/Toothbrush. For the freshening of that sickly mouth. See also; to remove the taste of hospital food.
13. Cat. I WISH.

Another few important items for me would be, a dressing gown, phone, cash (not a lot), diluting juice (I HATE water) and a bountiful array of socks.

So there you have it, you are now well prepared should you be checking in at your local hospital anytime soon. Oh, and feel free to tell me off if I've forgotten anything.
Wishing you all happy hospital holidays if they come. The only holiday destination where you apparently can't complain at being woken up for breakfast at 6am or sent to bed at 10! Haha.
They ARE hotels right? Right..?

Sunday, 6 May 2012

Crohnly The Strong

I've been thinking a lot lately about Crohn's. Mainly because i've been been feeling rancid, and also because i've been involved in a charity thing where i've had to talk to lots of people about my disease and what it entails. I've had to recount my story from pre-diagnosis to post-op and it's been a bit of a whirlwind.
When I talk about my life with Crohn's, on the whole I try to be positive. I try to be upbeat and have an "it could be worse!" attitude. This works on the most part, for the outside world. For my inner circle (not a euphemism) this fails miserably as they can pretty much always see right through me.
I've tried to think a lot about where my disease fits into my life. To be honest I'm still not sure. Lots of people I talk to use the phrase "defined by my disease" - personally I would like to think I am not, but lately, at least in the past few months, my life has certainly been going down that slippery slope.
Like a lot of sufferers, when I feel poorly I get down. I think about how its happening again, and how it will always happen, again and again and again.. then I start to feel better and think it's not so bad living with an incurable illness and I go round on this not-so-merry-go-round every few weeks.
Today I asked lots of my fellow Crohnie's if they feel they have ever, or will ever 'get over' having an incurable illness. The answers came back as a resounding 'No'. Not altogether surprising but a little disheartening.
Like me lots of people have struggled with knowing where Crohn's 'fits in' - obviously in an ideal world, in the bowels of Hell (pun intended). Crohn's can be relentless and creep up when you least expect it, or usually when things are going well. Anxiety at how uncertain the future can be is always there too, thats a hard one to shake off. Some become depressed due to Crohn's stopping them achieving what they want in life or when it gets in the way of relationships and even having a social life. Many people explained how hard it can be constantly having to explain the disease to others, or the feeling that no one can truly understand it.
Lots of Crohnie's feel the worst being hospitalized and the added uncertainty that can bring.
Then, after hearing all these stories, something wonderful happened. Rather than wax lyrical about how hard it is to cope with Crohn's, they shared their positive days, and how although they, like me, have to battle daily with sometimes unbearable symptoms, they know it is not all they are. That life goes on. That they HAVE to fight everyday to get where they want to be. To spite Crohn's. People I talk to everyday say they garner amazing support from others with the illness, which is wonderful to hear, especially for those who are not blessed with support from those closest. These people inspire me to stay positive in the face of a horrible illness.
I don't want to be defined by a disease. But I do want it to shape my life in a positive way. The knowledge I have now inspires me to help others where I can, and if possible make it easier to lead people through the maze of confusion that often arises post diagnosis. I want to show others that if people who have a incurable illness can remain positive than you damn well can too. You have a cold? Aww SCREW YOU!
There is always another day, always a time when Crohn's will not be rule you and always support out there. You may have defunct bowels but you have an army of Crohnie's behind you when you need them.
Crohn's is not all I am, but it will be with me for life so my disease and I will just have to learn to share this body as peacefully as possible. That means letting me eat a vat of mash once in a while, OK?