Thursday, 21 November 2013

The Gutty Professor

Lately I've found myself in a bit of a funk. Not the Bee Gees-disco-ball-Saturday-Night-Fever kind of funk unfortunately, more of a Want-to-bury-myself-in-my-pillow-until-Spring kind of a funk. 
I've felt as though I'm rotting away like a discarded apple core and there's been nothing I've found to pull me out of these blue moods.
There is of course a reason for all this drama; I've been ill. Well, ill-er than normal. I've been in the midst of a particularly nasty flare-up, (I still am), and I'm worried about what lies ahead. I've been trying my best not to wallow in this misery, as I generally try to be as positive as possible in living with Crohn's, but sometimes it's hard to pick yourself up and get on with it AGAIN and AGAIN.
It often feels entirely hopeless when you are sick for prolonged periods. The word 'incurable' really hits home and it's incredibly infuriating.

I've felt in the last few weeks that I've been grieving for my former life. This feeling comes in spurts and normally goes just as quickly as it arrives. Much like a continually disappointing lover. 
Like any loss in life it's something you rarely get over, you just learn to live without it. The trouble with this particular loss is that I AM still living with it. 
In 'lifetime' terms I'm still relatively new to my disease. Although it certainly feels as though I've been suffering from the illness for the majority of my life. It's when the symptoms pile on top of one another that it starts to become more of a burden to carry than a diseased companion along for the ride. Like right now. 
Grieving is of course a slow and painful process; especially when you find yourself fighting the murderer of your former life on a daily basis. Slightly disturbing analogy perhaps but a lot of sick-leave makes for a lot of crime-drama viewing.
I'm only able to write this post as I think I'm slowly starting to come out of this particular blue spell. There is of course no getting away from my Crohn's Disease and there's certainly no quick fix, so why choose to linger in the misery? Because it's not a choice. It's an inescapable routine and I often feel I just have to ride it out until things don't feel so bad in head as well as body. 
Eating and drinking hurt. I can't sleep. I have a relentless headache and shivers and sweats. I feel faint and nauseous all the time and have 0.00% energy. It's hard to get through the day without wanting to weep at the utter uselessness of my body and it's even harder telling people that that's how I feel.

I don't ever want pity from anyone, and I certainly don't want anyone I love to feel sad for me in any way, and I believe I speak for the vast majority of Crohn's patients in airing those thoughts; but I do want people to realise that there's more to Crohn's than just a little pain and a lot of money spent on toilet roll. 


Friday, 15 November 2013

Diseasey Street

When you live with a chronic illness you begin to become acutely aware of how other people react and adapt to your condition. There are two particular extremes of behaviour that have become the most prevalent in my life. These behaviours show themselves when someone around you is unwell themselves. 

Some seem to be a acting under the false pretence that because I am ill, I won't want to hear about their current situation. Or worse, that they are somehow belittling my condition purely through expressing their own symptoms. I hear constant cries of "...But it's nothing like you are going through..", or "...But obviously you have it worse.." almost immediately after talking about themselves. Like they've caught wind of the words that have just come from their own mouths and feel insta-guilt. 
There is no shame in being a sick friend of your sick friend. Please try to remember that our illness is a PART of our lives, not all of it. We want to know that you are doing ok because we care. In fact most Crohn's patients will profess that they've found themselves to be more accepting and understanding of others conditions through adapting to their own. We have simply become more awesome despite Crohn's. 
It's unnecessary to feel you cannot be open about your own issues for fear of offending us. It personally takes a lot more than telling me you have the flu to offend me. Although please do remember to choose your moments and activate your common sense; i.e. Complaining about a rash when someone is on a life support machine probably isn't appropriate. Or so that nurse told me anyway. 

At the other end of the sickness scale, some people will feel more inclined to talk about their own illness to sufferers of chronic illness because they consider us to be some form of walking-talking fount of all medical knowledge. It's certainly true that in living with Crohn's we have been probed more regularly than E.T's phone. We mostly have a vast and varied knowledge of medical procedures and medications. We KNOW pain relief and the signs of an oncoming flare-up. But we are not doctors. (Well I'm sure some of you are but you know what I mean). 
On the whole we are happy to help and advise when you come to us with a problem, just again bear in mind that it's tough for us and we don't always have the energy to solve our own medical mysteries ourselves let alone yours. 

So in conclusion, please talk to us when you are sick and grant us with the same compassion we try our best to offer you. Let us help you when we can to the best of our ability. Because anything you do to remind us or make us feel that we are not who we once were is more offensive than ever telling me about that weird spot on your backside. While I'm eating. 


Sunday, 10 November 2013

Crohn Fishing

I've had a rough few weeks. Thankfully not all entirely due to Crohn's; various other issues have recently begun to pile on top of one another until I'm seemingly fit to burst. 
Of course it's a well-known fact that Stress and Crohn's are about as compatible as ice cream on toast, so it really goes without saying that the stress of the last few weeks hasn't exactly led to the healthiest I've been either. 

I usually see myself as a pretty optimistic person. Especially where my disease is concerned. But lately it seems that no matter what I seem to do to attempt to drag myself out of the doldrums, I get yanked back in.
I've been experiencing all the tell-tale symptoms of a Crohn's flare; shivers and sweats, dehydration, mouth ulcers, loss of appetite and that old chestnut; abdominal pain, to name but a few. 
The signs of active disease are there and unfortunately I'm at a bit of a loss physically and emotionally to fight them off at the minute. Of course I have been carrying on with life regardless and trying to put these symptoms to the back of my mind, but when they start to increase tenfold and all at once, it becomes more difficult to keep a lid on things. 

I’m feeling more positive after having seen my consultant this week. He, and the nurse I see regularly are very easy to talk to and both know their stuff and me, inside out. (Quite literally.) The consultant will have me in for another MRI in a couple of weeks and then possibly bring my scope date forward from the New Year to late 2013. Not the best of news but certainly reassuring that the issues I’ve been having lately aren’t being ignored. I’m also very bad for making excuses for my symptoms, i.e. “I’ve been stressed lately so it’s probably just that” and swiftly brushing how I’ve been feeling under the carpet as if I’ve somehow brought it on myself.  This time I just laid myself bare (not literally obviously; the last time I did that I got a restraining order), and left it to the experts to get all Sherlock Holmes’y on my bowels. The consultant said he can definitely feel a “mass” which could potentially be something to worry about or not – best case scenario it’s just inflammation due to stress which will dissipate when the stress does.
Whatever the outcome of all these forthcoming tests is that the bottom line, (pun always intended), is that I will deal with it. If I have to have another camera manoeuvred where God didn’t intend it to be; so be it. If I have to have another surgery and 4months worth of biscuits rammed down my gullet; BRING IT ON. People come through much worse. Just knowing I’m being well looked after and my worries are being investigated already helps ease my troubled mind.

Not sure why I’m telling you all this, suppose I still see this blog as a form of public diary. It somehow helps to air my diseased laundry in public. Plus if even one of you takes heed and sees the doctor yourself if you are worried about something that doesn’t seem right, then it’s worthwhile. Don’t be a martyr to your body like I was for so long, the only person your holding back is yourself.  

Tuesday, 5 November 2013

Dr Strange, love

When you live with a chronic illness, spending lots of time in hospital or with your doctor tends to come with the territory. It's a requirement we have as patients in order to maintain as good a level of health as we can. 
So it stands to reason then that we will often end up forming relationships with medical professionals which are based on (preferably mutual) trust and respect. This isn't my very public way of breaking bad news to my partner of course, so let me explain what I mean..
The doctor must treat you with as much dignity and patience as possible, whilst keeping your details confidential and preparing for consultations with as much background as possible to hand. A patient also has responsibilities of course; we are expected to be honest and open about our symptoms, and to follow any given advice to the best of our ability. It's a mutually beneficial relationship that can develop over time.
After several weeks, months and maybe years with the same doctor, these patient/professional relationships can be a massive comfort. It's incredibly reassuring as a patient to feel you are being listened to, and even more importantly; being understood. An unprepared and uninterested doctor makes for an unhappy and anxious patient. 
I've been very lucky with my treatment in the years since my diagnosis. I've felt my consultants and nurses have ensured I'm well aware that help is only a phone call away if I'm really struggling and that their support is always around me like a safety net. Although not literally because that would be really weird. And probably breaking some major rules.
Prior to my eventual diagnosis I was passed from pillar to post before eventually being herded down the right path towards a viable resolution. I realise now how difficult Crohn's can be to diagnose and the various plethora of tests and procedures normally required to get the medical mystery solved. Of course diagnosis is really only the beginning, it can then take an even longer time to find the right form of treatment for each patient. Everyone is different and everyone reacts to treatments and medications in their own unique way, which unfortunately can often require the doctors to start with trial and error until they make a perfect match. Like some warped Blind Date but with medication and patient instead of two lonely singletons. (Where Cilla Back fits in to this analogy I have absolutely no idea.)
How the patient reacts to these treatments can also change over the course of a lifetime as the disease can be so changeable, and annoyingly, incurable. 
When you are lucky enough to have someone in charge of your care who takes the time to get to know you and not just treat you like another pest to cross off their list, it's a truly wonderful thing. This is why is can be so worrying when changing doctors for reasons out with your control. It's an anxious time for a patient and can feel like starting from scratch again. Infuriating, especially if you've previously dealt with someone who knew your condition inside out. Often literally.  
Try your best to help your doctor wherever possible. It's their job to help you feel as good as you  possibly can; hindering that because things are not moving as quickly as you'd like really doesn't help either of you. I'm learning to be more open with my consultants, I usually try and make excuses for my symptoms, or find the answers so they don't have to; but the fact is I'm the sick one and they are the sticking plaster. If I keep that in mind I cant go far wrong.

Saturday, 2 November 2013

The Ring

As it’s around Halloween, traditionally the scariest time of the year, I thought I’d use the more stomach-curdling aspects of Crohn’s Disease as the basis for this post.  Enter if you daaaaaaaaaare!  (A statement, incidentally, you should never use as a chat-up line).
Crohn’s is known as an ‘invisible illness’ which means that thankfully we as patients can keep the majority of our symptoms under wraps. This can be an absolute blessing, as if anyone was to see what was going on the inside on the outside they would think they’d entered the set of a horror film.

The condition of our insides, tend to leave a lot to be desired. I try to remember I have a disease which means my body is diseased – hence the hideous images that conjures up. When I had my first colonoscopy several years ago I thought I’d be a cocky and confident patient and stay as awake as I could to view my guts on the big screen like some warped masochistic horror fiend. This lasted mere moments before the drugs rendered me dozy, but the images have lasted a lifetime in my memory. I was, and am amazed at having been able to see my insides on some form of bizarre live feed, and the experience wasn’t entirely un-pleasant. I was shocked to see how horrendous the inside of my body looked. I felt hopeless at the realization that no matter how much make-up or body lotion I slavered onto myself, I would still be ‘ugly’ on the inside. The disease was still killing me from the inside out and that in itself was a terrifying prospect. After surgery things have improved but the illness itself still regularly reminds me how many horror sequels it’s capable of...
Having Crohn’s tends to demand a massive amount of time getting intimate with the porcelain. We often have to dedicate hours of our day to sitting on the toilet until our body decides to give us a well-deserved break. This allows for a lot of reading time and Candy Crush time amongst the crucifying pain. Because we are using the facilities so regularly we can often find ourselves having agonising backsides, chills, sweats and even masses of blood from the rear. This can either be due to tearing, or something more sinister. The first time I attempted the toilet after my surgery the pain was so incredible I thought I was DYING. In fact I reckon I would’ve gladly taken a bullet to the head at that moment to end it all. Although perhaps a bullet to the rear would’ve been decidedly more effective.
Although the illness is generally at its worst on the inner body, it tends to show itself on the patients outer-casing at times too. For me it’s mainly my skin and hair that are likely to be most badly affected. My skin becomes dry and chaffed and my face breaks out. My hair falls out in clumps and becomes dry and brittle. My lips turn white when I’m dehydrated and I lose all colour from my face. Not really a massively noticeable concern right enough as I look like a cast member from Twilight as it is.

These are all highly unpleasant symptoms, part and parcel of an even more rotten condition.  But most should be used as an early warning system to alert us that something is not right. Act on your symptoms and don’t just accept everything Crohn’s throws at you. Learn as much as you can about your illness so you can be prepared if things go downhill. If it helps, keep a medical diary to watch for any potential patterns and changes in your condition, it can be a massive boon when speaking to your doctor.
So, all scary stuff. As a rule I generally don’t like horror films as I’m a big mad fearty, but I’m certainly nowhere near as repulsed by gore anymore thanks to my experiences post- Crohn’s. I can now even watch an entire episode of E.R without almost gagging. So swings and roundabouts eh?