Life Lately | Rollercoasters

I don’t even know where to begin.


Seriously, it’s been an awful time lately.

Whilst I’ve avoided anything majorly going wrong or happening, I’ve had tons of shite dumped on top of me and I find myself struggling beyond my wildest dreams.

It all started when I got the results of my latest lot of scans and blood work back – I had a Liver MRI and Pelvis MRI on top of lots of specialist blood work done in April / May time – and they didn’t show any clinical reasons as to why I was still having alot of pain. The nearest they could explain it was that my last scope in February had aggravated my nerves around my stump and this is what was causing my agony. Beyond that, there was no treatment plan. Not even a consideration for why someone who has a high toleracy for pain would have this sort of pain. That was the end of that thread and I felt I was left to just cope with this pain.

So began the torrent of painkillers that would help me get comfortable during the day and help me sleep. Anyone who knows me, knows I do not like taking painkillers consistently because they eventually become ineffective. So I only like to use them when absolutely necessary. And this felt necessary but if they weren’t planning on solving my pain, it looked as if I was just going to have to live like this. No discussion of what to do further; just that if I’m not flaring, they couldn’t see any reason to interfere.

Excellent care. That still makes me angry, weeks after its happened and I’m loosing faith in my team. I feel lost and hurt and unsure where to turn.

Two weeks ago, after a couple weeks on a new painkiller – Pregablin – I got what felt like the flu but it was the only the aches and fatigue which got worse each day, resulting in having to take time off work because I could not physically get out of bed for a start and secondly everything hurt. I felt like someone has thrown me into a brick wall and I was just in constant agony. The most upsetting part was the fact that even my fingers hurt and I had moments when emptying my stoma bag was the most painful part of my day. My GP discontinued the Pregablin, told me to not take any painkillers and rest. We are reassessing my pain relief options at the end of this week and seeing where to go next. Whilst the resting has helped but its come with alot mental struggle, mostly with feeling guilty for being off work. I look okay, I feel better but my body is not ready or able to work yet. And I hate this part the most; because I want to work, so badly. I enjoy my job and I miss the environment when I am off because I thrive in some of the pressure. And I feel I add value and I can’t do that when I am unwell.

I can’t do much for anyone else when I am unwell and I need to take care. Literally. Take care of ME.

That’s also hard when you live alone. I spend alot of my time on my own resting and sleeping, because it is what my body is craving. Now, I feel anxious and am worrying about returning to work and getting my pain symptoms resolved. I can’t keep living like this. My IBD is in control with Vedolizumab and my stoma is working and behaving well. I honesty don’t know what else is wrong but this pain is driving me bonkers. It’s not the same as pre surgery, it is not as bad as it was between surgeries but it’s something and it is  chipping away at me slowly.

I want to keep going and struggling and proving to myself that this isn’t too bad but what if it is? What if this is my ‘too bad’ these days? Why do I feel like no-one is able to help me? Why am I having to fight to be believed?

Everything has taken alot of strength the last week or so. I’ve had to force myself to just rest and not write. And writing is my cathartic exercise when I am struggling. I find that not writing is harder than struggling to write. Knowing I don’t have it to focus my energy on, to distract myself from my pain; it’s been tough. Getting back into it after a break, thats tough too.

Sometimes I think what if I was just abit stronger, abit more stubborn, abit more direct and aggressive with my doctors. Sometimes I wonder what would have happened if I had just complained when I was angry and not waited. I wonder if I am doing right or if I am doing wrong, making mistakes, making myself worse. But then I remember my disease will do what it wants; it’ll fail its medications when it has had enough, it will flare without massive warning and I should be enjoying my good days. But, sadly, these do not feel like good days. And I would like a break please.

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