Tuesday, 30 October 2012

#NHBPM 3rd November

I don't know about this, but I'd like to..

I couldn't pin-point one thing in particular for this post. Probably because the truth is, I'd like to know EVERYTHING there is to know about my condition.
This thirst for knowledge has grown more so since my surgery last year. A once squeamish woman has been replaced by a ghoulish and diseased woman with an insatiable appetite for the operating table.
I've become fascinated by the ins and outs of my body. Pre-Crohn's, I couldn't have imagined being remotely interested in the workings of a common human - far les my own insides. I took as little interest as I could in my body and certainly would not have thanked any doctor who may have gone over the 'too much information' line.
Since having been diagnosed and more so after my operation, I have a compulsion to learn all I can. Mainly, no doubt, as I now feel forewarned is forearmed. If I know what may happen in the future I may be able to arm myself against, at the very least, the worst of it.
Now, when a doctor mentions something relating to my condition, rather than just let it fly over my head, and spend the rest of the day wondering what in the name of the wee man he was talking about, I instead will ask him to repeat himself, and explain what this means, and more importantly, what it all means for my bowels.
This helps me understand WHY things are going wrong and what I can do to help. All of which may not ease my bowels, but it certainly helps to easy a worried and confused mind.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM 2nd November

What's the Weirdest Thing about your Health?

For me, one of the most unusual things about my health is the way in which the majority of my symptoms are shielded underneath a cloak if invisibility.
Crohn's Disease is known as an 'invisible illness' - due to the fact that on the whole, the disease us not apparent to anyone on the outside. This can be both a curse and a blessing. The latter, as I can mainly go about my day to day life without having having to discuss, or make excuses for my illness. I can look, as best as I can, like 'me' - not a 'sick' person.
Having an 'invisible illness' can also unfortunately mean having to explain your symptoms in much more detail than perhaps someone who is 'outwardly' ill. It's essential I explain exactly what I'm feeling internally in order for the doctors to get a picture of what may be going on in there.
My Crohnie cloak of invisibility also allows me to often forget I'm sick for a little while. I can pop on my lipstick and heels and pretend for a night that I'm 'normal'. And although my insides may be entirely at odds with my insides, the whole world doesn't need to know..

This post was written as part of WEGO Health #NHBPM 30 posts in 30 days

Saturday, 27 October 2012

#NHBPM 22nd November

'Thanks' Post'

This post requires me to write about what I am 'thankful' for. I'd have to say, head and shoulders above the rest, I am most thankful for the love and support of my family and friends. They are a constant source of light at the end of my colon.
A cliché I know, but without them I don't know how I would've coped in the last few years. Pre and post diagnosis, they have been an endless stream of shoulders to cry on, ears to listen with and are always on hand with sage advice. My family and friends are also great at snapping me out of any dark days, and my partner is especially skilled in this art. They seem to have to wondrous ability to know what to say to help ease a worried mind, or how to pull me back from the brink when I'm feeling low. Because they know me so well, it's easier for me to be open with them. Because they love me, when I talk I also know they are truly listening.
To mention these little miracle workers would take another blog and bore the pants off the rest of you, so I won't, but they know who they are anyway.
I'm thankful for love. Being loved and giving love. I'm thankful for those who continue to stand by side, diseased and all, and for the wonderful fact that they do all this without expecting anything in return.
I hope I manage to give them back at least a quarter of what they give to me. It's the very, very least I can do.

This post was written as part of WEGO Health's #NHBPM - 30 posts in 30 days

#NHBPM 17th November

Strength's & Weaknesses'

Laughing at my disease. On the whole, I think I handle my illness pretty well, I try to use humour against Crohn's, by making light of the funnier moments. I find this also helps to ease any awkwardness in explaining the illness to others.

Openness. I openly talk about Crohn's and try to help people understand it's not all I am. It's only one (albeit diseased) part of me, that doesn't own me.

Determination. I've accepted I have an incurable disease, quite a long time ago. I've also decided, although it's a huge part of my life, I won't let it consume me. I don't want, and won't let my illness stop me doing the things I love and getting what I want out of life.

Apologising for my illness. I often feel the need to say 'sorry' for being ill or having to cancel/rearrange plans due to Crohn's. It's a difficult habit to break but I'm getting there..

Saying "Im fine" when I'm not. It's become my go-to response when I either don't want to focus on my illness or don't want to worry people. However I'm starting to realise it only makes the people who love me worry even more.

Accepting help. Like saying 'I'm fine', I need to learn to allow people to try and help me when I'm at my worst, rather than just assuming there's nothing they can do for me. In reality, sometimes just a hug or a kind word can make the world of difference.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

Sunday, 21 October 2012

#NHBPM 23rd November

'What my Doctor taught me..'

When I first felt ill, I told my parents. I told them my stomach hurt and that I thought I probably had some horrid bug or horredous trapped wind and that I thought I should see the doctor. They encouraged me and I visited the surgery. I visited the surgery a good few more times as my symptoms started to get worse and the pain more intense. My frustration also got worse as I seemed to be fighting a losing battle in expressing just how awful I felt and how seriously it was all affecting me.
I visited the doctor once more, it had taken me over an hour to walk to the surgery (5minutes away). I was ghostly white, had vomitted several times on the way there and was huddled over in pain like i'd just been kicked in my lady parts with a steel toed boot. My doctor panicked and sent me to the hospital, assuming I had appendicitis. Being the idiot I was back then, and not wanting to put anyone to any trouble, I took the bus rather than an ambulance the 40minutes to the hospital, almost passing out several times during the journey.
This then begun the same routine of back and forth frustration, but this time the visits were to the hospital instead of the doctors. I was getting nowhere until I was eventually admitted and got my own consultant. The same consultant i'd see on every visit. This alone was a blessed relief. It meant I didnt have to explain myself everytime I arrived at the hospital, I could chat to this woman who gradually was getting to know me and knew my condition, and more importantly, wanted to help me. She explained that although I answer all her questions and explain my symptoms, I dont TALK. She told me she thought I held back and down-played what I was going through, she said she could see I was actually in a much worse state than I said I was and that I had to tell her the truth so she could help. She taught me that honesty is the only way. Hearing her say all this was a real turning point for me. I realised she was right and that I DID hold back and keep quiet about how bad I felt. I didnt want to seem whiny, helpless, or worse, to be told it was all in my head and I was being over-dramatic. This couldnt have been further from the truth. I would leave the surgery feeling angry and upset at nothing being done for me, but it started to dawn on me that the reason for that may have had a lot to do with me giving the doctors minimal information to go on, or assuming what they would think of me.
When I did what my consultant told me to, doors (literally) opened for me - she made sure I was seen by a surgeon, she rushed me through various treatments and jumped through various hoops to get me ready for surgery. She fought my case in a room full of surgeons who told her i'd have to wait 6months before being considered for surgery, she got me onto and off the operating table within 3. She essentially was a massive part of saving my life.
Her words have stuck with me so much that I now hold nothing back wheni'm bad and enjoy the times when i'm good. Her encouragement has also helped in my relationships- I hear her refrain of 'Be honest' whenever I say "I'm fine" when i'm not. I try my best to be honest and talk about my illness when I can and cut myself a bit of slack whenever possible. Now be honest, isn't that the best policy?

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM 8th November

'Write a letter to your Health..'

Dear Health,

How are you?
That's a question people always ask of me and I often don't know how to answer. You and I have always had our differences. There was that time when you attempted to kill me when I was a baby by forcing me out of the comfort of my Mum's womb far, FAR too early. Guess you just couldnt wait for us to get going on the life front. Then there was that other time when you tried to take my life, our life, again when I was a toddler by giving me a horrendous virus yet not equipping me with the immune system to be able to fight it. I did though. No thanks to you. For a good few years after that you kept your distance and were on pretty good behaviour, stopping me in my tracks a few times with measles, chickenpox and various assorted issues.
I think a lot of the time you've perhaps felt i've not given you enough attention over the years. I know i've not had the best of diets, i've probably eaten too much chocolate and drank too much fizzy juice, not gotten enough exercise.. I had a pretty tame youth though, I didn't go crazy with drink and drugs and free love in my teens and I think on the whole I refrained from abusing you in a similar way to some young women my age.
I realise you've had a bit of a problem with me since I was a wee nipper, but what I want to know is why you had to land me with an incureable disease in the prime of my life?
I was just starting to get a handle on my relationship, moving (literally) onto a new chapter of my personal life and looking to change my career when you knocked me for six. Since then, I have to say i've thought you were a bit of a bastard to be honest. I've spent a lot of time blaming you for all my misfortunes but i'm coming to realise you are not entirely responsible for my defunct insides. I think holding onto negative feelings and anger at your lack of consideration for me doesn't help either of us. You and I are never going to see colon to colon so I should just learn to accept it.
We should just agree to disagree, you think you can lumber me with an incureable disease and make my life a living hell, I KNOW I can take whatever you have to throw at me.
Don't get me wrong, we will never be BFF's but I reckon we can work together to make things for my body a little bit easier. We both have to live in this incredibly hot body together, so how about we try to get along? What do you think? (about getting along obviously, the incredibly hot bit is a given).

Yours, diseased always,

Kath x x

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

Saturday, 13 October 2012

Crohnly Wanna Be With You

As a woman with Crohn's, there are a few issues myself and my fellow members if the fairer sex have to contend with. In addition, of course, to the already jam-packed array of symptoms the disease brings with it.
The most obvious difference between men and women being that of our monthly treat, or 'period' for the less squeamish male readers amongst you.
Through talking to several wonderful women with Crohn's, it seems, as Crohn's is completely different from person to person, the affects the disease has on ladies at their time of the month is also interchangeable.
For several women, including myself, symptoms and pain are noticeably more prominent during this time. Spending a lot more time at the loo is a regular occurrence for a few days prior to a period, and the pain of cramping seems to be intensified. Women often also complain of a constant need for the toilet and constipation, which as a Crohn's patient is not something positive. Others complain of their period causing even more bloating than usual, pressure on the gut, and even causing pain from colon to abdomen.
Other than the usual monthly few-day-diet of hot baths, hot water bottles, pain killers, and a vat of chocolate, there are few things to ease this extra pain.
Bit of a bloody nuisance eh?
So, as this special time of the month can often put a dampener on romance and the burning of loins, so can Crohn's Disease.
Some women find that sex on the day before or when in pain can often help ease tension. The theory being that the mind will be distracted from the pain the body feels. This is good, in theory, however for many of the Crohnie's I've spoken to, the issue is more in suffering from the disease and feeling the 'urge' and acting on it.
Obviously everyone is different, but for many women, sex and relationships can be real issues, and often spark worrying and stressful situations. This in turn often induces or exacerbates symptoms, causing a vicious, sexy, circle, difficult to break.
During bad flares, women with Crohn's often have no interest in sexual activity, the idea of anyone coming within an inch of you can be abhorrent when your insides feel like they've gone 10rounds with Mike Tyson.
Some women have gone as far as to say they would need drugs (of the purely medicinal kind obviously) to get in the mood, or that their sex drive has reached a serious pit stop due to living with the disease.
Nerves can be damaged over time due to surgery, medications and treatments, which can cause loss of sensation to all parts of the body.
Wind build up from all the 'activity' can be incredibly painful and sex can often cause abdominal cramping for hours or even days afterwards.
Lack of interest in making sweet, sweet love is saddening enough in itself, however factor into that having another persons feelings to consider, this can be a tricky time.
Relationships can suffer when the disease influences your mood. As with most people, when you are in constant pain, the last thing on your mind is your libido. This can be disheartening for your partner and hard to express without hurting your loved ones feelings. Guilt caused by this lack if interest can quickly escalate and make for an even more difficult situation.
Those not in relationships also say they find it difficult to know when to bring up their condition when meeting someone new. Many often find that the disease leaves them feeling far from sexy and alluring. Crohn's Disease and sexiness don't often go hand in hand.
Personally, I've found I've spent too long in dwelling on how unattractive Crohn's has made me feel. I know my beloved loves me, pre and post disease. I've spent far too long focusing on how bad things MIGHT get or how he, or I MIGHT feel in a month or a years time. I now try to be completely honest with myself and with him about how I feel and what's happening to my body. However 'unattractive' it may be.
There's no reason Crohn's can be 'sexy'. We have to make the most of what we have and use it to the best of our ability. For me that's the amazing strength and determination I've gained in living with this disease. The opportunity it gives me to laugh at myself and to show I am so much more than my disease. Oh, and despite Crohn's I still have a cracking rack.

Wednesday, 3 October 2012

A Fine Line

One of the worst things about Crohn's being an 'invisible illness' is that I have to talk about it.
Don't get me wrong, I'm by no means ashamed of having this disease, I simply mean as no one can see what's wrong I have to speak up for myself and explain my symptoms. I've spoken about this in my blog before, but as it still appears to be something I'm struggling with its still relevant to me.
Outwardly for Crohn's sufferers the milder symptoms, and most common, are not instantly apparent. Certainly I have found that the disease affects my appearance, in such things as bloating, skin rashes, dry skin and hair loss (lovely eh?) but again these things could all be written off as feeling under the weather or run down.
My parents, partner and close friends all 'know' when I'm feeling awful- they can see it in my flaky, cracked, dried out, haggard face, my behaviour and even my stance, being hunched up like the hunchback of Notredame gives it away most of the time. But even a select few of my colleagues have also said they can tell when I'm poorly- they see me almost everyday after all, and after a while start to spot the signs.
I spend an inordinate amount of my day saying "I'm fine!" when I'm not. Why do I do that? Yesterday I wasn't fine and my boss insisted I lie down in our first aid room. She tucked me in and everything like a proper legend. I felt slightly uncomfortable and awkward but as we get on pretty well I didn't feel daft being 'ill' around her. I think on the whole I'm not as honest as I could be about my Crohn's as I don't want to be pitied. Especially in a work environment- I want to appear strong and professional, not limp and sickly. Even if the latter two are how I feel the majority of the time.
This may all sound silly to those of you who may be reading this and are healthy - but bear in mind when you are sick you complain, you go to the doctors, you are 'cured' (on the whole) - you are entitled to gripe and moan because that's just what you do when you are ill, you get leeway to feel sorry for yourself for a few days!
But what do you do when that's how you feel everyday? When you feel awful almost everyday in life and know you aren't going to get better and there is no cure? It's the thing I struggle with most, trying to separate my 'life' with my illness. An impossible task. I can't seem to find where I am meant to comfortably slip this in. This blog is a great place for venting and waxing lyrical on my woes, a sort of public diary, but when the laptop is closed and the post is out there, I still have Crohn's. The end of the page is not the end of my story.
I've said before, honesty is key. In all aspects of life it's so important. So why do I find it so difficult not to lie about what's in my gut? (Literally). Having given it some thought I suspect I'm terrified of people getting 'sick' of me. Sick of me complaining, or cancelling plans or generally not being 'fun' anymore. But this is a vicious circle as the more I focus on that the more I bring my mood down! When I told my partner my fears about this, he said "But you don't talk about it - at all" - that was a long time ago, and since then I've made a point of telling him when I feel bad and explaining as best I can my symptoms. Because I realise I'm not alone, and that's something I'm very thankful for. I try to think of how I'd feel if the diseased guts were in the other body and it doesn't even bear thinking about. I'd be heartbroken and helpless to see someone I love going through this. I can't even handle it when my Dad has the cold. So I try to be tolerant and patient when people ask because I too am allowed to be cared for and loved. And that's a wonderful thing, that makes me feel so very FINE.