It’s been a while since I wrote a blog post and during that time I’ve been back in hospital. Over Christmas and the New Year I had that awful flu type bug that seemed to be doing the rounds and then just as I was getting over that my bowel disease thought it would be a good time to kick off. So I’ve basically spent the last 5 weeks in bed.
I’ve been on a reducing dose course of steroids for months now but whenever I’ve dropped below a certain dose all my symptoms return with a vengeance. So in early January I got in touch with the specialist IBD nurses who in turn got in touch with the gastroenterology consultant who said that they wanted to see my in clinic. The next day.
So off I went to the clinic where the Dr put me back up to the maximum dose in the hope that it would control the flare up I was experiencing and I would start to feel better. Sadly, this didn’t happen and I just felt worse and worse so I rang the IBD nurses again almost a week later who said that I probably needed to be admitted. So I rang the ward but they didn’t have any beds so I had the choice of either waiting at home for a bed to come free or going into hospital via A&E. I was feeling so poorly that the thought of spending 24+ hours in A&E on a trolley (if I was lucky enough to get one) wasn’t something I really fancied. So I decided to stay at home where I could be in my own bed and be in control of my pain meds (and my multiple hot water bottles!)
After 2 days of waiting I was told a bed was now free so I was able to be admitted directly to the ward. To be honest, if there hasn’t been a bed come free that day I would have had to go to A&E as the pain was getting to be unmanageable and I was just feeling so, so poorly by this stage. On the ward there are 21 beds and 17 of them are in single rooms with their own bathrooms. Most of the time I’ve been lucky enough to get one of these single rooms but this time I was in one of the double rooms with another lady. It’s not the sharing of a room that bothers me though, it’s the sharing of the bathroom. As you can imagine on a gastro ward the toilet is constantly in use, people are having to leave pots of urine and stool for the nurses to measure and some people are frankly just filthy. Every time I needed to use the toilet (which could be as much as 30 times a day) I was having to don a pair of gloves and wipe it down with the cleaning wipes before I could go. So although I was pleased to be in hospital and being looked after it wasn’t quite as pleasant as usual.
While I was in there I thought they’d put me onto IV steroids to get everything under control but the dr said he didn’t want to do that as the IV steroids would just mask the cause of the issue. So I had loads of blood tests and an MRI scan to see what’s going on. And frustratingly the answer was ‘we don’t really know’. It seems my bowel has these hissy fits and nobody knows what’s causing them, or if the steroids and immunosuppressants are actually doing anything to treat or prevent them. So all we can do is deal with them as they happen, mainly through pain meds, and hope that they resolve themselves.
I was in hospital for just over a week and in the 8 days since I’ve been home I’ve been constantly exhausted. Just doing basic things leaves me worn out and I’m pretty much in bed 24/7. I feel so frustrated and let down by my body and it’s really hard to not get really down. I look around the house and see a million things that need doing, I want to spend time doing things with Hubby and the kids and I want to feel well enough to be able to go out and not be worried to be more than a few minutes from a toilet. On the odd day I’m well enough to drive the kids to school I’m struggling to manage the 30 minute round trip without needing the loo. Luckily my in-laws live 1 minute from the kids school so I’ve been running in there when I’ve had to go but it’s not ideal having to plan every trip out the house in relation to the nearest toilet.
I’ve been trying to remind myself that quite often I come out of hospital and dip into a bit of a depressive state. I think that it comes from having been really poorly, the guilt of being away from home and then wanting to make up for that but not being physically well enough to do all the things I want to do. It’s like the mind is willing (and overactive!) but the body is weak. I hate the fact that there’s so much I would like to do in life, places I wish I could travel to, things I had hoped I would achieve but I’m so restricted by this bloody illness. It just seems never ending and that’s a really hard thing to deal with some days. I’m telling myself that at least I’m at home and can be around for hubby and the kids but feeling so exhausted and being in bed a lot makes me feel pretty useless. And it’s hard because I’m lonely but also don’t really want to socialise which I know is a complete oxymoron.
I try really hard to put a brace face on things to people around me and I would hate to think that I’m a burden or a ‘needy’ friend. But there are days when I wish someone would see through the facade or I could just reach out and say ‘today is not a good day and I need you’. But I don’t and instead I tend to hide away, at home, in my bed where I can sleep or watch Netflix and pretend that I’m not in pain, that my body isn’t completely knackered and that I don’t feel like shit.
I’m other news, before I went into hospital I had a letter from the DWP about my PIP. Remember a few months ago I had to complete the renewal form? Well it would appear it’s been read and they’ve graciously awarded me PIP until 2027. On the one hand this is good news as I know I will have 4 years without the stress and indignity of having to fill the form out again but they said in the letter they can’t award it indefinitely as ‘my needs might change’. Not sure what change they’re expecting to happen over the coming years… for my bowel to grow back? For me to suddenly get well? I think my track record of just getting poorlier with each passing year would speak volumes, but apparently not!
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