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.

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

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.

Since You've Been Crohn

One of the more frustrating aspects of Crohn's is it's ability to cause your weight to fluctuate. Regularly.
I was at my worst (and skinniest) around Aug/Sept of 2010. The photo below was taken when I was a bridesmaid at a friends wedding. I had shrunken down to a skeletal 6stone and the dress had to be taken in 5 or 6 times in the run up to the wedding in order to avoid me flashing my unmentionables to the assembled guests. It was horrible. My bones were almost all visible, I had little to no chest (this is freakish for me) and could see my entire rib cage. Lovely. And oh so attractive in the wedding photos. I looked like a walking coat hanger without the coat.

So if that was about the lightest I've dropped to, I went the other way on steroids. These lovely drugs cause swelling of the face and neck and are designed to help encourage appetite so you are ALWAYS hungry. The desire to eat is often so strong you will eat literally anything you can get your hands on. (R.I.P Fluffy).
When going through a flare up, a Crohnie's weight can change from hour to hour. Often I wake up bloated and by the middle of the day my jeans are struggling to remain on my hips. Not easy trying to dress for Crohn's. I think even Gok Wan would struggle with this one. 'How to look good Diseased' perhaps..?
But what really matters is that we are healthy. And well. Weight changing is annoying and can be depressing and frustrating but it's important to learn to use these changes to your body as signs something is not right. If I start to lose weight rapidly I know I'm on the cusp of a flare-up. Right now if I'm putting weight on I'm happy about it - it's been so long since I approached my 'normal' healthy weight that it's nice to see that wee 3rd chin start to make appearance. If I'm putting weight on it means I am EATING! It means i'm taking in food and keeping it there, until nature takes it course, of course. Being able to eat is good. Cake is good. Chocolate is good. Mash is good. You get the general idea.
Eat when you can and make the most of it. Don't get hung up on your love handles. They are a sign of a happy tummy spreading the love across the rest of your body! That's why they call them 'love handles'! Isn't it..?

Tum Knows Best

It's natural to worry. It's built in us all. Some people can deal with this in built urge in different ways. Some can actually go about their daily business without even giving a thought to whether or not they've taken that chicken out of the freezer to defrost for dinner tonight? And did I close the freezer behind me? Did I remember to cover the chicken? Will I get home to a flooded kitchen and a piece of raw meat stinking out the house and spreading disease? DID I?!
Yes, some people just don't care. Or perhaps they just don't allow these paranoid thoughts to rule the roost.
I envy these people.
I worry. About everything. To the point that I OFTEN over-analyse the smallest of things as mundane as 'what bus will we catch?'. This drives people close to me to the brink of suicide. Not really of course. But pretty close.
This worrying aspect of my personality was kindly passed on from my mother, who is the champion for unnecessary stress. She holds a level of skill in terms of worrying I can only worry I'll never achieve.
This in mind, when I became ill and it was found that I had Crohn's, my mums worrying went into OVERDRIVE. She was constantly on edge waiting for updates and anxiously calling me or my boyfriend at every opportunity for updates on how many times I'd vomited that morning.
I jest of course, but all this was understandable, I myself was a big crohnic ball of worry too. I was terrified at what was happening to my body and scared to look into my crystal bowel to see what the future may hold for my newly diseased self. The Nicholls worry machine was in full flow - we were on fire. Coincidentally so was my backside the majority of the time.
When I had had my surgery and was safely ensconced at home and recovering, my mum was always on hand to help. However, rather than her worry levels start to subside to see me in a more relaxed environment than a bustling hospital ward, she seemed to find it harder to let go. She had to remain in almost constant contact, to the point of panicking I was taken into hospital again if I couldn't answer a call within minutes. This on turn made me worry about her. And stress. And get ill. And so the circle of Crohn's begins again.
So how much concern is too much? My mum worries for good reason. Two of her children suffer from incurable illnesses. She feels helpless, and to blame, and fears for our futures. She doesn't want sympathy for this - she hates the fact that she can't simply do her motherly duty of kissing it better and sticking a plaster of it. Because 'it' can't be kissed away. I wouldn't kiss mines anyway - it's all diseased. Eww.
My mum and I have now reached an understanding of sorts. I have (as I try to with everyone close to me) promised to be honest when I'm bad, and make the most of it when I'm good. She has promised to back off a little and let me learn to cope with my illness on my own, as much as I can.
Unless I need a cuddle. Then all bets are off.

Crohn's Hugs & Harmony

Lately I've struggled with where my disease 'fits in' with my life. Of course, 'fits in' is not the correct phrase where Crohn's is concerned. It makes itself known at all times - often entirely unexpectedly. This can be all at once frustrating, upsetting and aggravating.
Now it's been almost a year and a half since my surgery and I'm becoming more able to adapt to making Crohn's a part of my life, I find it myself struggling at times not to become overwhelmed by it all.
Those closest to me, my parents, close friends and partner, make it easy to talk about. Although at times I feel I still perhaps hold back as I don't want to cause any undue worry. I think now that the physical pain is, on the whole, under control, it's the emotional aspects I'm finding it harder to get a grip on.
I find myself stuck between not wanting Crohn's to become 'all I am' and wanting people to be aware of what I'm going through. Not in a selfish, 'woe is me' type of way, but so that I don't have to endlessly explain what the disease is and how it affects me. At times I let it become yet another thing to worry about when other aspects of my life are hard to deal with. Which is wrong, it's so much worse for me to hold in my emotions as it tends to fuel the symptoms. It's important not to be a martyr.
I over think things as it is, so when I feel a twinge or something not quite right I am instantly transported back to that operating table waiting for surgery. Rather than just calmly taking painkillers and getting rest it's like I'm my own private CCTV, constantly on the lookout for bowel related dodgy dealings. I stress about what the pain might mean and this makes it worse. It's a vicious circle I can't seem to get out of.
Crohn's, like a small attention-demanding child, has to be factored into all social aspects of my life too.
This weekend I'm going away for the hen-do of a wonderful friend. This will be lots of fun and a great, overdue chance to let my hair down.
However, along with the excitement of packing and outfit planning, I'm already thinking about what pleasures Crohn's will bring to the table. I'm worrying about how much (or little as the case will probably be) I can safely drink without destroying myself for rest of the day. I'm worrying about my bad habit of being starving and then eating like a ravenous cave (wo)man and instantly regretting it as I start to swell up like a helium ballon. I'm worrying about the costume (it's a Burlesque theme) as I'll be wearing a corset - typically not the best choice for a swollen tum and dodgy guts. Then I worry about all the above as the last thing I want is for my illness to play any part in the day/night - I want my friend to remember forever. And not because her pal had to be stretchered off after OD'ing on garlic bread. See what I mean about that vicious circle?
Because I've been in the midst of a flare-up lately, my skin and hair have been in terrible condition. This may sound vain but a woman likes to look her best and sometimes make-up and hairspray just don't do the trick when you see The wicked witch of Eastwick staring back from the mirror.
But putting all these minor worries aside I'm going to do my best to do everything in moderation and ENJOY MYSELF. Its not fair I should put Crohn's first - its never put my feelings first! Selfish bastard. So this weekend Crohn's can either shape up or ship out. And as I'll be wearing a corset, it'll maybe want to ship out - this bra ain't big enough for the both of us.

Like A Rolling Crohn

A very common symptom of Crohns Disease, and many other tummy related troubles, is bloating.
This is the bane of my life. It may seem like a petty thing to complain about but when you have a hot date [trip to the corner shop] and are slipping into a sexy little skintight number [pyjamas] to impress your beau, the last thing you want is to suddenly appear 12 months pregnant [25months].
It's an irritation. In more ways than one.
For a start it's an inconvenience when dressing. What to wear having never had a child and therefore no maternity jeans?
It's uncomfortable as hell. How to sit/lie down/ roll down hills with a ballon attached to your front?
It makes you feel full. 'No thanks, I'll pass up that bonbon Ta, I've got enough wind in here to propel a small jet plane'.

I like to think I have a vaguely ok figure. I'm not overweight, I'm proud I'm back to my 'normal' weight after my op as I'd dropped to just over 6stone. I am pretty confident in my body (now anyway, that took a long time and a lot of prompting from my bf to appreciate what I have). So when the Bloat-Attack strikes it's a nuisance. It ruins all that hard work I've put into looking half decent. [3 minutes in front of the mirror, just enough time before it breaks] ;)

Today was a bloated day. I put on my trusty 'fat trousers' which are unsightly and make my legs look like tree trunks. But they have an elasticated waist which is quite simply a LIFE SAVER.
I think my bf would agree with me when I say there is nothing sexier of an evening when I have a meal, pop the button of my jeans and let it all hang out. I know he struggles to contain his animal instincts on seeing my swollen belly and listening to it growl like a faulty washing machine. I can see it in his eyes. When he wipes away the tears that is.
There are not many remedies for bloating. It's one of the many wonderful joys of Crohns and IBD in general. IBS sufferers also experience the joy that comes with resting your dinner on your tummy. My friend who has IBS tends to find rubbing her tum helps to soothe the discomfort. I do that too, it's a habit. Although in her case this has caused several queries as to whether or not she is expecting. 'Yes, if by expecting, you mean expecting to expel enough gas to heat my house for a year?'
Some other suggestions include cutting out fizzy drinks, reducing your fibre intake and drinking more water.
Personally I've found cutting out fizzy drinks altogether has helped, but then the bloating comes so unexpectedly that I'm never quite sure what's caused it this time. I'm also partial to a wee peppermint tea of an evening. Can help ease things a little without you having to intake too much caffeine.
It really is one of those little [big] things you have to learn to adapt too. You've just got to roll with it. Literally.