To ask for a handhold - health related

[Blue0ysterCunt]

A year ago on Friday there I was diagnosed with a brain tumour, which ended up having an intratumoral bleed while I was waiting for my surgery date. Ended up having an emergency craniotomy to remove it.

Since the massive tonic clonic seizure I had which lead to the diagnosis (I was unconscious for five hours), I've been left with weakness, poor balance, memory issues and focal aware seizures. The doctor also suspects fibromyalgia based on previous symptoms but thinks recent years of my life have triggered it badly.

I expected to be a lot better by now, this evening reminded me of how little progress I've made. I had a seizure I think caused by tiredness, I barely did anything today. I can't use the cooker alone nor have a shower.

I know I'm being hard on myself, I feel really alone, I know I should feel lucky to be alive but I'm overwhelmed with trauma.

Any words of advice on how to make the most of things would be lovely.

I live alone with my cat, I obviously don't work, I've got a few lovely friends and my family live far away, there are issues there, plus I'm getting over an abusive relationship which is hard because I'm stuck in the trauma bond.

That does sound difficult. Are you receiving all the benefits you're entitled to?

I'm sorry I don't have any great ideas, beyond taking pleasure in small things eg sunsets and nice chocolate

OP how you feel seems to be to be entirely understandable. What you're dealing with sounds very frightening and unsettling. I wouldn't be surprised if you're experiencing some PTSD.

How long ago was the surgery?

I think you just need to reset for now, get more comfortable where you are. Is therapy an option for you? It reads like you're racing to get away from the situation you're in, but it doesn't work like that.

Are you taking medication for the seizures? What's the treatment plan looked like up to this point post-surgery?

Hi, no, I had totally overestimated what I could manage and then I was frightened to report a change because I know they can take points off.

I'm going to speak to the doctor this week hopefully, as we were ruling things out before the fibromyalgia diagnosis, but I do need to change my claim as I'm in lots of pain and exhausted constantly.

Sunsets are lovely, although the best I've got right now is watching the wheelie bins flying around 🤣

Hi, thank you, yes I've had a lot of stuff happen in my life, but particularly in the last few years which I think made my doctor suggest that fibromyalgia is highly likely. I was also told by the oncology nurse (wasn't cancerous but I was seen by oncology) that it was obvious I already had PTSD before all of this happened.

Surgery was late November last year. I can't even think about it without breaking down. I can't afford therapy but I am getting help from women's aid and I have a cpn.

I've had my MRI and it hasn't grown again, but my next appointment with neurology is next August. I'm on the highest dose of an epilepsy med, but tomorrow I've got a long list of symptoms to send to my neurology team to keep them updated.

I'm also waiting for a mental health based OT, I had one who was supposed to help me with physio type stuff but I don't think I was ready, she felt she was exhausting me, but I will see her again in the future I think.

Oh OP, it's such a lot. I'm not an expert on any of it, but I think I would just put any ideas of progress in terms of physical health to one side and focus on your mental health. It seems as though your physical condition is stable and it's also out of your hands unfortunately.

There's plenty you can do for your mind though. Make it a project to fit as many lovely things into your day as you can. Treat yourself often. Mindfulness if therapy is too much right now. You need to find as much peace as you can. Occupy the space you're in as well as you can, find some joy where you are. Then any progress becomes a bonus rather than essential. Which should (hopefully) take the pressure off a little?

Disclaimer: this is the ramblings of an unqualified person, and likely useless. I just didn't want to scroll past.

It sounds, to a non professional, that you have suffered a lot of health related trauma on top of existing trauma. I would ask your GP about counselling. I know you said it's unaffordable but ask anyway. You may find it really helpful. Day to day, rest when you need, eat what you fancy, talk to your friends and family, find a series on TV that you really love. Make a cosy,warm space. You need to be very kind to yourself. Your body may be battered and knackered but it got you through. Nourish and nurture it.