Had a really vivid dream last night that I was in hospital getting another operation. Major 'phew' moment then when I realised I was still firmly in my own bed with the cat keeping my toes warm.
Seems a lifetime away now since I was in there getting the pesky diseased bit of me removed.
I have always been a fairly squeamish person (taken from my dad who can't even be in the same room when I talk hospitals), however now I wish I could have seen the operation being done and that bit of my insides that was causing me so much bother. Weird? I'd say so, but it's amazing how all that squeamishness goes out the window when it's your own body it's happening to. Plus the fact that I went to 'sleep' in agony and woke up what seemed like only a few minutes later feeling great! Albeit out of my tiny mind on drugs..
I was pretty cool about the whole operation thing - my Mum and Aunt took me to the hospital on the morning of my op and my mum was very anxious and on the verge of losing control of her faculties at any given moment, so I tried my best not to let her see I was feeling the same but times by 100.
After they dropped me off I was whisked away and put through my paces with various tests (they did most of the checks the previous day) and several nurses and doctors ran through what would be happening. I tried my best to take it all in but the nerves started to build and build. My op was scheduled for 8am but as the other women waiting with me were only in for "minimal procedures" and I was "the main attraction", they wanted to leave to the end. Flatterers ;)
I didn't end up getting taken until around 3 in the afternoon. Cue lots of daytime TV and gossip magazines. Hard to concentrate on 'Cash in The Attic' though when the thought i'd soon be getting part of my body removed was firmly in the forefront of my mind. Much as I was thrilled that the Jones family from Bristol had enough crap in their attic to afford a trip to the Maldives, a part of me (probably the naughty diseased part) also wanted to have them all killed, looking at their smug faces, them quite happily jetting off to paradise without a care in the world while I sat in a hospital gown 12 sizes too big (I only weighed 6 and a half stone at this point), dreading the door opening.
After that I can't remember much else - I tried not to allow myself to think too much about what was actually happening, just smiled and nodded my way through the various instructions I was given and the tubes and needles being inserted into me. When the nurses took me through to the operating room I started to feel anxious, I remember a nurse ticking off a checklist of questions- he asked me if I knew what op I was about to get - I panicked as I couldn't remember the medical name for it, as if somehow he'd say "Wrong answer, Sorry!" like some mad game-show host and they'd wheel me back to the ward showing me a scar I could've won. Thankfully I passed and was soon drifting off into a drug induced haze.
Next thing I remember is coming round and being handed a phone to call my nearest and dearest. Spoke to my mum first, can't remember what we said to one another, remember her sounding a bit emotional and frazzled. Then spoke to J, can still hear his voice saying "hello!" - he obviously was expecting my mum to have maybe called and not me. Sounded so happy to hear my voice and his voice is the only solid thing I can remember in about 24hrs. He's kind of like ointment on a burn to me, when I'm stressed he has an amazing way of putting me at ease. Truly the apple to my crumble :)
Anyway I digress.. The op was successful and after I was moved from high dependancy the nurses were keen as mustard to get me moving. I actually laughed out loud at the nurse who came over 1st thing in the morning suggesting I sit up. She came back later in a tag team with another nurse clearly styled on Hulk Hogan to exact her revenge. A few incredibly painful minutes later and several prolonged squeezes on my morphine drip and I was up and about. Well at least sitting up straight anyway.
But thankfully all of the above wasn't an elaborate dream and actually happened, meaning I now feel much, much better. Hopefully now that's out of my system (literally) I can go back to dreaming about the usual girly things like fluffy kittens, high heels and periods. Zzz...
Went out to a Ceilidh the other night. My friend's mum got married and had a big bash to celebrate. I took my mum with me and we had a couple of drinks and a lovely time. Chatted with my friend's family then we were in our way home by half 9. Poor show. This was at my request by the way, so I can't even blame my lovely mum's advancing years as an excuse.
Not so many years ago I used to be able to pull off a week at college, followed by reams of homework, a 14 hour shift in a restaurant, a few hours pulling pints in my local with ease, then out to drink said pints and have a dance until well into the wee hours. What has become of me?!
Well, I could easily blame my Crohn's but that probably wouldn't stand up in court. It probably has a lot to do with not being nearly as young as I used to be and having those horrible adult things like 'bills' and 'responsibilities' to deal with - YUK :(
When I think back to all the times in my life when i've thought something wasn't quite right (health-wise) I could probably now attribute it all to having carried Crohn's with me the majority of my life without realising there was anything wrong with me. My whole life i've assumed it was normal to feel instantly bloated and sick after EVERY meal or to have constant niggly headaches or feel shattered most of the time. Why would you question something when you've never known any different? I think my lack of enthusiasm for food slightly worried my parents whilst I was growing up, but I think it was mainly just written off as a high metabolism or something similar; All the Nicholls men can eat for Scotland and still manage to look like bean-poles. Handsome bean-poles I should add.
I hated feeling so queasy and just not quite right after having enjoyed stuffing my face , but just figured i'd eaten too much, and that this was my body's form of punishment for committing the cardinal sin of Gluttony. A few of my friends have also commented that they also had similar reservations in the past about my eating habits. One lovely friend of mine said she used to worry I had some form of eating disorder, she couldn't understand why I was getting full after only a few bites of lunch or dinner. Makes me a bit melancholy to think about people I love having harbored these secret concerns and not having been able to convey their fears. But then again how do you question something when your not even sure there is a problem?
Now in hindsight I suppose if my friends, family or more importantly myself, had brought any of these worries to light I might have been on my way to a diagnosis much quicker. Then again probably not! Can't really imagine how that would even transpire anyway, some sort of weird intervention where my friends and family force me to face my ultimate fear and eat more than half a plate of food?! Sends a shiver down my spine just thinking about it.. :)
Anyway, I think I'm now managing to reign in my wild-party-non-stop-pop-til-you-drop-don't-stop-til-you-get-enough lifestyle to make allowances for my Crohn's.. Replacing the crisps and cider with custard creams and tea, the dancing with bubble baths and the 3am taxi queues with quality zzz's. None of which makes me unhappy really, just a bit misty-eyed for my younger days.
I'm sure there's life in the old (diseased) dog yet ;)
So yesterday was the worst Crohn's pain i've experienced since before my operation. Horrible. Came on suddenly and lasted a good 7 SOLID HOURS. Had to leave work and get my mum to pick me up and take me to my house, like a bloody 5 year old, where I went straight to my bed. Took me about a hour to get even vaguely comfortable enough to lie down. Eventually passed, but the worry didn't - still couldn't shake the feeling that I was heading back down Agony Avenue without so much as a map, making stop-offs at Pain Place, Diarrhea Drive and Weight Loss Way.
It's very hard when I get a bit down about things, to try and snap myself back out of it. I've always tried to be a glass-half-full kind of a gal, but sometimes it still hits me again that my disease is for life. Life is a very long time. The longest time infact. Murderers and rapists who get 'life' are usually out of the clink well before they start sporting grey hair, yet I get a life sentence with no chance of parole.
It's quite ridiculous, and sounds even more ludicrous when I try to explain this to people, but I sometimes feel as though all this is happening to someone else and i'm just watching it all unfold like some perverted voyeur. Even though i'm well aware of everything that's happened in the last year or so (and have the scar to prove it), it still occasionally gets me very down when I remember that this isn't just going to go away. I know, in what's left of the rational part of my mind, that it's only very early days for my Crohn's career (?) and that in time i'll get used to the idea. But knowing all that doesn't seem to stop me feeling very blue about it all at times.
After a while, time passes and people don't want to talk about it anymore - its understandable - I don't want to talk about it most of the time - most people want to push it to the back of their minds as I look fine on the outside. Besides, it's not 'fun' to hear someone whine constantly about their health issues, especially when most people don't even understand what Crohn's actually is. Family and friends on the other hand want to know I am doing well and that i'm improving rather than getting worse, so constant updates on the state of my bowels just gets them down too and causes more worry.
It's often easier just to say the well worn "i'm fine" as I don't want to upset/worry anyone, when the truth is the majority of the time i'm decidedly below par. I think i'm probably my own worst enemy though as I am determined not to be seen as the "sick" daughter/sister/girlfriend/friend/cat owner; and would really much rather just be "Kathleen" :)
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... :)
