I've been thinking a lot recently about how my disease has affected those closest to me.
After along time trying to adjust to how having Crohn's has changed me, I've not really had much time to catch my breath and spare a thought for the people who have endlessly supported me through it all. Sounds very selfish actually saying that out loud but it's incredible how much this disease takes over your life, especially in the early stages. So, in order to get a better idea of how my nearest and dearest have adapted to the new and (what's the opposite of improved?) me, I thought the simplest way was to ask!
On finding out what disease I was dealing with, the general consensus amongst my family and friends seemed to be the worst case scenario that I would probably die. Of course, I will obviously die at some point - last time I checked I am not immortal. Although hopefully not until well into our old age and not because Crohn's has got the better of me. I'm sure my mother found the thought of losing her only daughter far from funny right enough, in fact, as she put it, she "cried a lot and prayed a lot and had a lot of headaches worrying about my little girl". Now at this juncture I should probably explain a little bit about myself. I cry at the drop of a hat. Clearly a trait taken from my mother. For example, the RSPCA adverts completely FLOOR me - kittens in danger? Are you kidding me? So when I think about someone I love being upset, especially over me, I feel incredible guilt and want to hug them intensely until they have no more moisture left in them to produce tears. Basically, I am an emotional wreck.
My family and friends also pointed out how upsetting it was to have to see me in hospital, and how hard it was to try and be positive for my sake whilst feeling so sad themselves. The fact that none of us knew the ins and (more appropriately) outs, of the disease also caused a lot of frustration and confusion. My brother, who also had the added worry of a possible hereditary link, trawled the net for info and my mum used the more traditional, pre- Google method of listening to members of the public who don't have the first clue what they are talking about. Once I started to learn more about the disease and could impart my newly garnered wisdom, everyone started to calm down a wee bit.
One of my favourite comments, which makes me smile and breaks my heart in equal measure comes from a wonderful friend of mine who, when asked how she feels about things now, says, "..a lot of the time I wish Crohn's would give me my bestie back".
So, in conclusion, my little fact finding mission has made me realise that now I am not the only one living with Crohn's Disease. When I got diagnosed all the people that I love did too. Crohn's turned up to the party uninvited and didn't even bring so much as a bottle of wine. And as it's MY party, i'll cry if I want to :)
Apart from feeling knackered, occasional bloating and bouts of feeling like someone is wringing out my guts like a wet towel, i've not had too many prominent symptoms to report recently. The main issue i've noticed lately has been the state my skin is in.
There are several ways in which Crohn's affects the skin, however as this has never really been an issue for me before, I can only assume it's the drug trial causing this slow decline of my face into that of the elephant (wo)man.
These symptoms have only come into play within the last few weeks and aren't showing any signs of improvement. My skin is usually pretty peachy, even if I do say so myself. Although the hue leaves a lot to be desired, somewhere between Milk Bottle and Magnolia on the colour-chart. But lately my face is dry beyond belief and most of it is blotchy and red and sore. My chin especially looks like i've been attacked by a cheese grater, and no amount of moisturiser seems to be helping my cause.
Apparently painful little red 'nodules' or bumps can appear on the body during Crohn's flare-ups and I would say I can feel one of those bad-boys coming on anytime soon. Not a thought i'm particularly relishing to be honest. Trying to remain positive that although I feel rubbish just now it's still a vast improvement on a few months back.
Right enough a few months back I didn't have the face of a crocodile who's just had a particularly nasty shave.
Never mind, I'll keep slapping on the E45 and hope for the best. If all else fails I think i'd make a passable bearded lady.. I always did want to be in ZZ Top after all.
This past week has been a bit hit and miss Crohn's wise. Work has been a bit easier as i'm slowly remembering how to do my job. Thankfully it's also been fairly pressure and stress-free and really the only one putting pressure on me is myself. Learning to accept I can't do some things as easily as I used to before I became ill and that I have to take things a lot easier has been a bit of a chore.
Sometimes even carrying the shopping back to the house makes me feel like an absolute weakling, and the Nicholls family trait of acting like a martyr when it comes to illness occasionally comes into play and I start punishing myself for my own shortcomings.
One of the most frustrating things about Crohn's is the unpredictability of it. I can feel fine in the morning, make plans, look forward to the day ahead then have a bite of lunch and feel awful. Then the only place I want to be is in my bed under the covers feeling sorry for myself. Obviously in most cases this is far from possible and I just have to carry on regardless. Come to think of it, there really should be a law passed making it compulsory to have beds situated in alloted areas around the globe to be used in Crohn's-related-snoozing-emergencies. Bear in mind I haven't really thought this idea through and there is a high chance this could be taken advantage of. Mainly by homeless people and nymphomaniacs alike :(
Things are much better now than they were this time last year when I was in constant pain. Now it's just occasional depending on my mood/what I eat/the days activities/stress levels etc etc.
I can pretend that i'm 'normal' most of the time now, which Crohn's or no Crohn's is always a novelty.
Watched a programme last night called '24 hours in A&E' and it got me thinking about my many visits to the emergency ward since I became ill.
The way some patients treat the doctors and nurses in there most of the time is incredible, and the mainly sorry bunch they have to deal with must be very hard work indeed.
The most memorable of my visits to A&E was when I was taken in an ambulance from my local hospital to a much bigger one in another town. The paramedics talked over my head to the doctors about me and left me lying on a trolley by the front desk at the main door barely clothed and freezing. I'd had nothing but paracetamol through a drip for the past 7 hours and was in agony, starving with a pounding headache. I was so pale one of the nurses called me Snow White. I certainly felt like it, although my 'dwarves' left a lot to be desired; Sweary, Junkie, Drunk, Blood-spattered, Suicidal, Wife-beater and Creepy. ('Doc' is obviously not one of the dwarves in this scenario).
One of the paramedics must have taken pity on me, seeing I was the only woman there, miles away from home and clearly terrified. He got me a blanket as I was getting leered at and put my bag underneath my pillow incase someone tried to rob me if I feel asleep. There was NO chance of that, and that did NOT put me at ease one iota!
The staff have such a hard and relentless job to do with endless injuries and aliments being rushed in through the doors at all times of the day and night. Patients constantly complaining about the length of time they've been waiting to be seen, as if behind those hallowed doors all the staff are wasting time drinking tea and tucking into Hob Nobs whilst the waiting room is filled with those awful sick people!
It's hard not to get frustrated and impatient when you are in pain and sick (or both) but I always feel that the thought there's a light at the end of the poorly tunnel starts to make you feel better already. Yeah.. I know, absolute tosh. But if I do have to spend another night in A&E i'll do my best to remain calm in the face of mild horror.
So to all the nurses, doctors and hospital staff out there, I salute you!
Now make me feel better... :)
