Hard Slog

It is Friday once more. For me, this doesn’t hold the same euphoria as it does to my friends who have Monday to Friday 9-5 jobs. I still have a weekend worth of shifts to complete before I get my “weekend” break. And this week, it can’t come soon enough.

I’ve got alot on my mind.
But what is new?

I’m probably worrying about alot of nothing, but to me, they are extremely troublesome.

Firstly: my pain. For once, this is not in my gut but has migrated into my knees, ankles, hips and lower back. I was foolish enough at the weekend to not take my full amount of Pred – I felt awfully sick after one or two tablets of my four and just couldn’t manage them – but have subsequently gone down to only 15 mg of Pred at the beginning of the week, so the missed tablets shouldn’t have made too much of a dent in my pain and inflammation levels as a whole. But my pain is growing. Just something else I don’t need to happen nor worry about. Alas, I got my GP to check me over, take new bloods and hopefully seeing a Rheumotologist in April, at some point. Waiting for a referral is like waiting for an important parcel; “no, not today, maybe tomorrow..”

Secondly, I went for my first smear test last week – the joys of becoming 25 in April and new NHS protocols – and despite its uncomfortable nature, the sister who talked me through it mentioned that my compromised immune system – 16 months and counting now! – might play a role in what results I get. I was unsure of the exact nature of her comment, and of course, no one can give you an exact answer because 1) I’ve not got my results yet and 2) there is no conclusive proof as to whether or not I’ll need treatment for whatever results they come back with. In the end, I’ve still got a week left to wait before I can chase my test results and see what fate is going to be bestode upon me.

Thirdly, my dad is back in the hospital again. This time for a surgerical repair of his tornn bicep muscle he got from an accident a week ago. It is terrible ironic that not even 6 weeks since his last operation – a gallbladder removal – he is back again for more intervention. It is the most he has had done since he was 18. It is weird and spooky, because we always joke as a family I am the problem child – thank you Crohns Disease! – and I was more likely to need intervention of my condition this year than anyone else. Alas, no.

It brings up my mixed feelings about surgery again. And I would like to point out here that I don’t plan on having any elective surgery for my Crohns done, and I still want to wait until the last possible opportunity until my GI decides surgery is my only and last option. But I still can’t get away from the feelings about surgery and my thoughts on how mine would go. I know, I know, wishing away time and thinking about things that might not happen yet, but I’m surrounded by surgery and the aftermath of it. I think everyone elses experiences about it (I speak of my immediate family here) has shaped how I would deal with it.

Do I feel ready for it? I guess as much as I can feel ready for it, I am. But until it happens, I’m not. I’ve tried for the last year or so to not dwell on it but now it is always around me, and its been along time since I was sick enough to be admitted into the Gastro ward, so I guess I wouldn’t even be sure at this point what I would be like with the pain. So, getting to the worse place and then having surgery as a last otpion would give me time to “get used to” the pain I would be in. So, the aftermath of being cut open and the pain wouldn’t be all that bad. And it would only get better not worse, hopefully.

Currently, the Crohns is at bay, for today, for this moment, at least. Lately, its been difficult. I’ve had alot of rough days that have just become the normal and I just get on with it. Without a IBD nurse until the end of the month, I’ve just got to cope, haven’t I? I’ve got a very busy schedule for the forseeable future, so a problem with the Crohns would really piss me off and upset my balance I’ve finally gotten used to and able to execute with pride.

Every thing feels like such a battle these days. I’m on a path of hard slog when it comes to my Crohns group and my Brownie pack. I’m coming up against many obstacales and I’m finding my tether getting shorter and shorter, espeically with the latter. The first, I will always fight for, because the Crohns group is my baby and it is a very personal battle and interest for me. I will never let that suffer any sort of problems, as long as I can prevent them. I’ve increased my social calandar too, so that if I am truly sensible (having learnt from the lessons of last month, triple fold) I will be able to fulfill my diary. Is it sad that that is the most satfifying part of my day?

At the moment, work is the only place I can go, ironically, and feel safe and secure. I am damn good at my job and it is simple and easy and so so relaxing at times. Just routine. I am rather enjoying it to be honest, getting a good amount of hours and thus pay every week. But, I am still painfully aware – my body won’t let me forget it seems – that this job is not best suited to my needs anymore. And I must stick with it until I find something else, and that needs to happen sooner rather than later. I can only do so much and at some point my body will pull out of the fight and I’ll be left weak and frustrated and sick again. No thank you.

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