Being told you have an incurable condition is pretty mind boggling at the best of times. There is so much that runs through you head: what if it never hits remission, what if the meds don’t work, what if I need endless surgeries, how much pain will I have to put up with, when will it stop?
It takes an indefinite amount of time to get comfortable with this, with your new found skin. I didn’t handle it pretty well. I suffered through a range of emotions: starting with constant crying, to welling up every time I thought about my poor guts and my poor poor life. Then I got discharged the first time and I hated myself. I was taking 16 tablets a day – the lovely Pred, Pentasa, iron, calcium and two antibiotics for C-Diff – I was unable to see how my life would get better, if at all.
I would look at my cup full of tablets every morning and want to punch the wall. How did it get to this? I knew in the best part of my being that taking these pills would help me. They would stop the sickness and make me me again. But most days I dreaded getting up. It was hard to muster the strength – both physically and mentally – to drag my body down start and begin the onslaught of taking my meds. It was hell. I last roughly a month before I was back in the hospital, underweight and so so tired of the pain.
You what I did? I got happy. Underneath my pain, I was actually glad I was so ill that I could come back to Ward 18. They would take care of me! I could get IV fluids and painkillers! I didn’t have to do anything but get better! However, this mantra didn’t last long; my C-Diff came back. And I was fighting a very tough battle that made me insanely jealous of the healthy people around me. I picked fights with my family, ignored all my friends, isolated myself from the nursing staff and generally shut myself off from the world. I didn’t think it could get any better.
I then started Azathioprine, something which kick started me. I knew my condition was getting more and more severe; the more times they sent me for scans and scopes. They started talking about surgery and Humira and I got terrified. How could I have been so stupid? How could I have moaned about taking little tablets when they were now suggesting cutting me open? Of giving me injections to help my symptoms? I stood up and took abit of control back, I decided that it was MY fucking life and I controlled it. Not some stupid inflamed guts. I would start Aza and kick my guts back into normality.
Sadly, because Aza is a immunosuppressant, I got physically weaker and weaker. I was constantly down in the dumps and I would sit silently crying some days. They decided upped my dosage to see how if that helped. It didn’t. Two days later I was back in the hospital – throwing up what I can only describe as green milk and seeing it coming out from behind too. It was horrendous. I also got C-Diff AGAIN (although, they now concluded it never actually left and grew through taking away my immune system on Aza) and got Chicken Pox to boot. I was very very sick. I was under 8st in weight and I looked like death. I hadn’t eaten a meal in weeks, only my water consumption – something my father ‘beat’ into me – was keeping me coherent and alive. I was very glad to see the ambulance turn up at the house that Wednesday morning. I was so weak, I was carried downstairs in my pjs and dressing gown and rushed to A&E. The drugs were the best that time. I forgot all about where I was, what was happening or who was around. It was a comfortably numb 36hrs.
This was to be my most recent admission into Good Hope. It is now almost 4 months ago, and the only time I set foot in the place is for monthly bloods and 6 weekly clinic appointments. Too many memories of my last stay have kept me healthy so far; along with Humira. Whilst sitting in my isolation bed on Ward 18 in mid November, I contemplated how I was going to have to live with this. And I have to live with it, every day. Without fail, I have to get up and survive and not be beaten by this. I can’t let it get me down or control my life. Yes, I have had to change my lifestyle, but it has vastly improved my condition; or at least had put a dampener on the almost inevitable surgery option.
I have spent a lot of time confronting my disease and its grasp on my guts. Medically, I am fit as anyone else who walks down the street. But inside, I am fighting a war. A raging battle to keep my inflammation down and my spirits up. And yes, I have days when it overcomes me and I cry like a child and I get angry and hit things. Or smash plates. Or just grumble on to myself about how ridiculous I am being; because at least I’m still here and I can manage it! But I can’t help it. I would rather rant to myself than keep silent and then snap at someone. It did not go down well whilst in hospital and I could not get away with it now, out in the big bad world. Like I said, its about control.
But when it comes to the emotional side, my mind gets fuzzy. Because I can’t decipher what is true and what is in my head. My medication doesn’t help me think clearly 100% of the time; something they neglected to warn me about whilst being under their clinical and medical care. But why would they? They are doctors; meant to solve the puzzle of my symptoms to return me healthy to the real world. The emotional crap shoot of my life is in no way under their jurisdiction.
Who’s is it under then? It is just me in this? Well, it would seem the simple answer is: Yes. It is me. It is my personal life, individual to me and me alone, and only I know what is going on and how it can be solved. Alas, I am useless at this point. I have no idea what I want. I know what I don’t want, and maybe that is the best way to look at this. However, these ‘must not’ s are hidden away for a period of time and by then I am already gone, fallen. So it seems, a cycle is imminent.
So. It is not about wanting a certain person, it is eliminating people of a certain mindset and opinion.
– Crohns is NOT IBS and it is not ‘just bad bowel days’ it runs so much deeper.
– It IS spontaneous. I can not control how and when my flare up occur, control of my diet and stress is my only means.
– I don’t need ‘sympathy’ from Non-Crohnies; sadly if you don’t have it, you won’t know my pain. That being said, I like people who will just listen to me rant and get angry and get upset. Because they are the people who know my condition is a bitch but know its that not me that makes me irritable.
– Consequently, I don’t want to be treated any differently. I am not. I’m just abit sick every now and again. And if they can see when that is happening and do the appropriate things; ie get me to the hospital, they are true friends.
– Making fun of my disease is a coping method. I use it a lot. I am also very open about it too, I find talking therapeutic. But please tell me when too much is TOO MUCH.
Despite being fine by myself, I look to find someone who would want to be with me. When I am a mess. When I am happy. When I am in the hospital. When I get excited about my blood results, or any sort of news, little or big. When I shy away, they can and want to bring me back to life. Who can be everything to me without being everything. Someone who is just as scared and messed up as I am. Who thinks twice before trusting. Someone who is just like me, in every way. Someone who just likes me for what I am, not for what I have.
I made the mistake in the past of thinking that my Crohns would be a ‘deal breaker’ in any sort of relationship. I was dreadfully wrong. My Crohns makes me that much more special. It makes me amazing in a way that only I can be.