I’m taking this afternoon to talk you about medication.
This was the morning regiment of my tablets whilst in hospital last September. There are (from l-r) two calcium (Adcal), 40 mg of Prednisolone and three coated Pentasa. That was pretty standard for new Crohn’s diagnosis. The Pentasa would be repeated again during the day. It would take me a while to get used to all these new medications, of just taking them to begin with, then with what they would do, or in my case, fail to do.
The second photo is my regiment last November, once I was finally out of hospital for the last time. It is 25mg of Pred, a single Adcal, one anti viral (pink, fizzy one) and two antibiotics, Vancomycin. I was recovering from the second round of C Diff and the chicken pox. Coming off of IV antibiotics and antiviral was a lovely feeling. I left the ward on a Monday night armed with another bag of prescriptions, ready for the next 8 days of tablets before clinic. I would increase my Pred once more before Humira, and then began being weened off it, 10mg a week, so by the middle of January I was tablet free. It was a relief.
I was always bad at taking tablets, even a paracetamol gave me problems. I was only ever good with my contraceptives because it was mostly definitely in my best interest, or it was a patch I changed once a week. So, I was extremely proud of myself for getting through all those pills they came round and gave me every day. I wanted to get better, I knew medication would help. And in the end, even though everything else failed, I knew Humira would help me. A injection once every two weeks couldn’t be that bad, and if it was, at least I wasn’t taking lots of pills every morning before or with breakfast. I remember that being my biggest fear for my return to work; I’d never be on time, I’d be stuck with a tablet in my throat. I’d have to take my entire break to get more of them into my system half way through the day. No one saw me give myself my injection, not for a good 6 months.
Most of what I feel now about my Crohn’s medication is related to what has come before me; I am so thankful it is one injection bi weekly. It is not 10+ pills a day. It is over and done within a minute and then I get on with my day. And yes, this was true, so very true. Now? The injection terrifies me, even when someone else is doing it. That fear I feel inside of my broken guts is still there, I just plaster a smile on my face before my mother stabs me. I act okay with everything. It is a resounding and familiar reminder that that is exactly how I go on living. Not that I don’t like living, not that I don’t enjoy my life, because I do, but really, a needle in my thigh is getting me through 14 days worth of Crohn’s. It has gotten me through 10 months worth of Crohn’s related aches and pains. It masks my symptoms behind a cloud of energy, appetite and smiles. It helps. But it is so powerful, I can’t ever stop it. Until it goes wrong, I must continue. I worry about the long term effects. There is no research, no answers, no reassurance that this medication is good for me. It is good for my guts, end of. Is that a good enough reason to ignore everything else it is doing, or had done, to me? According to the Gastro department, it is. Why should I fight against that?
I just don’t want to end up where I was before. I don’t want the pill days to come back. I don’t want to grow dependent on a glass full of tablets to get me through the days. I don’t want to begin to dread the mornings again. I don’t want my depression to rear its ugly, annoying as fuck, head again. I don’t want to return to the hell I was once in.
I guess what I’m trying to say, is that we all have our own personal hell and our own personal reasons as to why we continue and fight like we do. We all fight, just in different ways. I hope we all have the same goal, but its difficult to tell some days what the goal is. Today it is clear; my goal is to recover. I over did it yesterday. I was running on empty and I continued to push myself. I’ve had a cold coming for a couple days and I knew it would throw off my Humira schedule, push it back a couple days. And today, I’m achy and tired and cold and miserable. I’d like to think this won’t last and I won’t be anywhere near my own personal hell, but these photos, these memories, help aid myself in keeping going. And what I once thought was the biggest deal in my life, was soon removed and replaced with something else. And, whilst I don’t fear doing what is necessary when it is thrust upon me, I fear the unnerving familiarity it would have.
When someone tells you “I couldn’t do that… if it was me, I just couldn’t do that.. I don’t know how you do that..” it doesn’t help matters. You do what is necessary to get you through. I was moaned and complained so much about my tablets in hospital, and I moaned when I got out. I never once moaned about sticking a needle in my thigh. It was sort of cool, to begin with, it was something new and exciting. Not alot of people can say that is what they have to do in order to keep themselves going (of course, diabetes comes in here, sorry). I felt special. And it is, Remicade is favoured over Humira, 8 / 10 times.
And I do it because I am told to. And because the needle in my thigh helps me focus. Take away the pain and the swelling and the bloody hour I wait to get the pen to room temperature nowadays, it gives me focus. It reminds me of where I am. I am beyond the help of tablets to maintain my remission. This keeps my Crohn’s in remission. And it beats the hell out of 14 tablets a day. It beats the hell out of wishing I wasn’t such an awkward bugger. It beats the hell out of reliving the past and lusting after the pains to return. It beats a flare up.