January. Officially the worst news I could get!

January...

So, I posted yesterday. A small miracle in itself, given I’ve been a bit rubbish with blog entries lately. Not because I don’t care, but because life has been loud, chaotic, and frankly relentless. I’ll try to backtrack properly another time, but for now: January.

January has been… horrific.

I really thought this year would be different. Last year had some genuinely amazing moments, but they were overshadowed by nastiness, bullying, and more than my fair share of crap. Surely this year was due to be better, right? Apparently not. It kicked off with allergy chaos (as documented in my last post), and today has well and truly put the icing on the cake.

Not a nice cake. Not a Victoria sponge. More like a rock cake that’s been lobbed at my face while I’m already rolling downhill with no brakes.

Today felt like falling into a massive black hole.

When I found out that the CRPS was back five years ago, that diagnosis nearly broke me. CRPS is cruel, unpredictable, and life-altering. I’ve always known I’d be largely wheelchair-dependent, but I held onto hope, because hope was justified. The nerve surgeries explained why I can’t wear a prosthetic properly; my nerves grow neuromas like weeds. Still, there was always something left to try. I could use my prosthetic maybe 20–30% of the time if we could get rid of the neuromas. There was still a chance of walking again. A chance, one day, of even being pain-free.

Most importantly, there was always the “final tool in the box”: an above-knee amputation. No guarantees, but a possibility. A possibility that the CRPS could be gone. A possibility of a future without this level of pain. That belief, that promise, almost, has been what’s kept me going.

Just before Christmas, I had an MRI because the bone pain in my leg was getting worse. Then I got a call asking me to attend the one-stop clinic, somewhere I’ve been many times before surgery. I felt hopeful. They must have a plan. Yes, maybe more surgery, but maybe this one would help.

So we went today. Awful journey. Pouring rain. Rushed. We arrived at 11 for an 11am appointment and weren’t seen until nearly 1. Still, when I went into the room and saw the full team, two consultants, pain nurse, anaesthetist, I thought, Right. This is it. There’s a plan.

There wasn’t.

The MRI looked “good”. And that was the problem. There is nothing more they’re willing to do.

I asked again about an above-knee amputation. Before I’d even finished explaining how much pain I’m in just wheeling, how my leg hurts constantly resting on the stump board, it was shut down. The concern is that I’d develop neuromas higher up, meaning I wouldn’t even be able to sit. And just like that, my last hope was gone.

To have someone calmly tell you that the one option that could have given you a chance... a chance at walking, or even just relief from one of the two worst pains imaginable, is off the table… it’s devastating. They’re not doing more surgery. They’re not trying anything else. They’re just leaving me like this. If I was an animal they'd at least do me the dignity of putting me to sleep to spare me the agony of being left like this. They dont do that with people. You just get left to attempt to carry on!

Living with two separate pain conditions (actually 6 in total!) that constantly battle each other. No breaks. No respite. No “good days”. I try so hard to stay positive, to distract myself with wheeling, events, anything, but nothing takes the pain away.

This is genuinely the worst news I could have received. People might think there are worse things. Right now, some of those would feel like a blessing. Because I don’t know how long I can carry on like this. In this much pain. With no hope.

They did say I could write everything down from the original amputation onwards, and they’d send it to consultants in America to see if there’s anything non-surgical that could help. But what? Nothing takes CRPS away except amputation, and that option is gone. Nerve pain treatments haven’t worked, and now I’m allergic to the one pain medication that actually helped. I’m also allergic to one of the bowel medications I rely on, leaving me with a single, extremely expensive option that I’m constantly warned I shouldn’t be using long-term.

My bowel doesn’t work properly, I have a long redundant bowel and diverticular disease. Doctors won’t do anything about that either because they blame the medication. I knew I’d be able to come off it if they fixed the nerve issue, because CRPSis not helped by any meds. Now that’s not happening either.

It feels like everything has just… stopped. Like my life has ended, but my body hasn’t got the memo.

I don’t know how to move forward from here. I don’t know how to carry on. And for the first time, I genuinely don’t know what to do.

So yes. January has officially been the worst month of my life.

And it’s only the 15th.