Game of Crohn's

It's a common aspect of having a chronic illness to spend a lot of time in doctors surgeries and/or in hospitals. 

Unavoidable really then that you will encounter the staff that inhabit and exact the running of these buildings. Doctors and nurses. Maybe even surgeons. 

It's also common that happening upon a bad or simply unpleasant experience with a health professional is one that we as regular patients will encounter from time to time. Myself, I've had many of these. Only one or two however that I would consider 'blogging fodder' - and by that I mean experiences so awful and/or shocking I'd want to wax lyrical about them, for all the world to see. The thought has crossed my mind that why should I, as the tiny weakling of a patient bow down to the power someone in a role so important has over me? 

Shouldn't I go hell for leather and publicise such horrible treatment across social networking sites for all the world to see? 

Well the short answer is no. 

In my humble opinion, mouthing off about a difficult time you've had, with a difficult person, can only do more harm than good. Of course if the experience you wish to speak of is so bad that it's breaking rules of patient/doctor conduct then by all means speak out. But through the right channels. Speak to the persons head honcho. Or complain to the ward sister. Deal with it within the hospital or the health board. 

Posting an inflammatory rant on Facebook, Twitter or your social network of choice may make you feel better for 5minutes but will it solve the problem? Now please, don't get me wrong, I've spent a lot of time in hospitals. I've had countless experiences where i've wanted to scream from the rooftops that something shouldn't be happening, and I've relayed all these stories to my family and friends. So i'm by no means judging anyone who has or may do this. Seeing a few of these posts today alone has just got me thinking that it can be potentially harmful to a much wider bracket than the post-ee may think. 

The advent and attraction of social networking, health forums and such like has also made it part of the norm to post these feelings to the wider world. Conversations are carried out en masse with friends where anyone can stick their opinion in.  

Myself, I used to use these sites to provide updates for my friends on my time in hospital - I'd post funny statuses from 'inside' and announce when I was getting home excitedly. As I still see a lot of you do. That's obviously fine and a great way to update those you don't always feel like texting or calling when you are already weak and tired or utterly forgetful thanks to tons of medication. It's one less thing to worry about when you are already in a big enough state of anxiety about your future out with the ward walls. 

When it becomes health-bashing is where the problem arises. Bear in mind who may see what you are posting. Health communities can be tight knit, and people take advice from others, you don't know what damage your potentially worrying words could be doing to someone reading them. You slating a certain hospital or doctor could cause no end of anxiety to someone about to go through the same thing. I'm not of course implying we sugar-coat everything, but often this doctor- baiting is an aspect of 'competitive suffering' I just can't get on board with. We are all facing this illness together - it's not a race to the finish line it's a case of learning how to cope and face each day without feeling like death to the best of our ability. Where is the sense in pummelling others into the ground for being less worse-off than you? In hospital or without? If you are having a hard time in dealing with your doctor, request another one. Don't put the fear of god into his/her other patients. You may be the common denominator.. 

I'm not preaching we have the most wonderful health care system or the most perfect Mary Poppin's style staff but our NHS is already fragile enough - as are we - don't work at compounding matters for your own irrelevant gain. Put some of that energy into getting well. 

A World of Our Crohn

It’s often incredibly difficult when living with a chronic illness to come to terms with the changes in your established relationships. This is an issue most people fail to appreciate may arise when they in the midst of dealing with their own pain and suffering. This is completely understandable of course, especially in the early days of a disease.

Most patients’ initial thoughts aren’t for those around them, as there is usually far too much information to be taken in from doctors and nurses from the get-go. But soon it can’t be helped and thoughts will naturally drift along to what must people on the outside of the hospital wards must be thinking. Of you. Of your disease.

For me, after vaguely managing to come to terms with my illness and the fact that I would be stuck with Crohn’s Disease for life, my worries turned to my loved ones. I became upset that my disease was beginning to affect them too. I hated seeing them suffer because of something I couldn’t control. I felt entirely to blame for causing all this additional, (and as I saw it at the time), unnecessary, stress. Of course I appreciate now that’s an entirely skewed view of things; the people this was affecting love me no matter what, and any worry related to my condition is part and parcel of that concern and can’t be helped.

One of my main concerns was how my friends, family and partner would perceive me following my diagnosis and eventual release from hospital. It wasn’t so much the cosmetic side of things, after all they’d already seen/heard/smelt me at my absolute worst... It was more how they may behave and the extent to which they would perhaps struggle to adapt to having a ‘sick’ relative.

Regardless of the illness, people around you can find it hard to gauge how to ‘deal’ with you post-diagnosis. You’ve suddenly become a ‘patient’ over a person and for some it can be easy to slip into pitying the individual or feeling you have to lighten the load, or withhold difficult news to spare their feelings.

At my lowest ebb I worried about how I would adapt to my new condition. I certainly hadn’t bargained on how others would feel as a result. I realised quickly I had to snap out of gloomy moods – I didn’t want to be pitied and I certainly didn’t want to be seen as a ‘health – bore’. The bottom line was that I didn’t want to spend all day everyday discussing my... bottom…  And I think, lovely as it is, most people around me would agree.

Friends and family of Crohn’s sufferers should try to remember that the person you love is still there, regardless of their illness. They haven’t changed.

..Well that’s not entirely true actually. They may have lost parts of their anatomy, or shed pounds, lost hair or found that they suddenly have a whole new appearance thanks to Crohn’s procedures or medications. Their outlook on life may also have changed; maybe they feel down or hopeless, or have spells of depression. But they still have the same heart. It’s still the same person you spent your childhood with, or watched/helped grown up, or fell in love with.

It’s important that those on the outside of the disease looking in sometimes try to remind their loved one of that when it feels like they are being lost to their disease. Think of it as friendly advice. This sort of steering has always stood me in good stead over the years. I would own a pair of knee high pink leather boots if it weren’t for a word in the ear reminding me they weren’t quite for me...

Crohn’s really isn’t ‘for me’ either, but unfortunately I’m stuck with it. Doesn’t mean I have to like it though, and I certainly won’t let it ruin the relationships I so dearly cherish.

 

 

My Body Don't Tolerate

I often have to remember that due to vast and varied selection of different symptoms involved in living with Crohn's Disease, it can be very important to establish some form of pecking order. What I mean by this is, that in order to carry out your daily activities, hold down a job, raise children (and/or a cat), see friends and family, and maintain a relationship, you often have to gauge which of your many symptoms are tolerable, and under which circumstances more definite action is required.

I find it hard to get a balance on a daily basis of what the disease will allow me to do.

I feel pretty rotten in varying degrees every day. Some days I feel worse than others. Some blissful days I barely have a symptom. It's hard to explain this to people who don't suffer from a chronic illness. Many think its an exaggeration but I only wish it were. I don't in any way mean to sound dramatic, I'm just stating the facts.

 Although Crohn's is most widely known as a condition affecting the bowels and intestines, it's much less commonly known that the disease can affect the whole body too. 

For me the main offenders amongst these side-symptoms are arthritis, scalp and skin issues, bloating, headaches, hot and cold flushes, dizziness, anaemia and fatigue. 

It's trying to establish what qualifies as 'unwell' when it comes to what you can and can't do that can be an issue.

I have a personal tolerance level where pain is concerned. Before my surgery I was in constant and often utterly unbearable pain. I couldn't stand upright, could barely walk and the pain was relentless, sharp and piercing. Often like being stabbed in the gut with a hot poker. (I would imagine..).

So I know now what I can handle - not enjoy - handle. Tolerate. Therefore on the flip-side I know what I can't. I know how long to allow my body to put up with the pain before getting it the help it needs and I know who to call if I can't cope and need to go to hospital.
Having this mental back-up plan and fore-knowledge is strangely reassuring. This is why when people see me running to and fro from the toilet, and worry I'm having a tough time, I can say without having to fib, that although I'm maybe not at my best, I'm coping.

 

Crohn with The Wind

One of my favourite of many beloved Bowie lyrics is; "Don't let me hear you say life's taking you nowhere.."

It resonates with me because I've spent a lot of my twenties in a constant state of panic about my impending future. Filled with endless worry about what little I've achieved in my life and the closer I hurtle towards my thirties that panic has only increased.
In my late teens and early twenties I spent a lot of time complaining that the reasons I hadn't met my then goals were for an inordinate amount of different reasons. None of which were apparently my own fault. I'd mentally blame my apparent failings on countless (imaginary) misfortunes life had bestowed on me; anything to take the blame away from knocking on my own door and in a vain attempt to turn down the heat on the pressure cooker that was my brain.
In reality all this did was make me feel worse as I knew I was lying to myself. 
 

If you want anything in life only you can make it happen. Outside of the glossy films and teen shows we are subjected to throughout our childhood, 'normal' youths aren't handed the dream job, perfect husband/wife, beautiful house, and the keys to Daddy's mercedes on a platter. But as Bowie so beautifully insinuates, no one wants to hear you complaining about it. Especially when at that age we are still full of so much potential. 

So what of illness? What happens to those heady hopes and dreams when you are told you will be sick for the rest of your life? 

Well, regardless of the age at which you are dealt the 'incurable' blow, the same rule always applies. 

Get. On. With. It. 

You might find whatever 'it' is, is now all of a sudden about 45 million times harder, and you might find you have to alter your ambitions a little (or a lot) to fit in with your new life, but you shouldn't and mustn't ever let it stop you. Illness (especially of the treatable variety) should certainly not give you cause to be 'excused' from going after what you want. Although i'll admit 'being excused' is something you'll have to do a lot if you have Crohn's Disease.. 

I currently find myself in a comfortable position. I still want more from my life, I would say I'm still am not where I always dreamt I'd be, but I'm HAPPY.
All the worries of my life Pre-Crohn's Disease seem utterly juvenile and insignificant when compared to what I've been through physically and mentally in the last few years. That doesn't mean I still don't want some of the same things, because I do, but now that list of Wants disguised as Needs has been scored out and replaced with Health and Happiness. 
 

A disease as unpredictable as Crohn's has a way of interfering in your everyday plans, so it's incredibly important you learn to adapt and make the absolute most of the times when you are well. Give yourself amazingly happy memories to enjoy when those times when you are feeling at your lowest ebb arise. Don't complain about what you don't have but embrace what you do. 

I don't feel at the age I am now that I've achieved everything I want to in life. Not by any stretch of the imagination. I'm not sure anyone I know or have ever met, has. Maybe even my beloved Bowie still wants more out of life..

But I know I can do my utmost to get to where I want to be. Disease or not.  

It'll be a huge challenge and probably knock the stuffing out of you trying to get what you want in spite of your Crohn's Disease, but lets face it, if it was easy where would be the fun in that?