To think my life is just to hard and don’t want to carry on

[greenishredblue]

Ok just to say I am not suicidal I am just more of thinking what’s the point of me anymore.

was diagnosed with epilepsy at 21 which has never come under control- have up to 20 seizures a week. I have seen doctors and tried loads of things including a full 2 weeks in hospital for tests.

was diagnosed with fibromyalgia at 27 after a bout of glandular fever so in pain most of the time plus the delightful other stuff that comes with fibro

was diagnosed with narcolepsy at 31, then sleep REM disorder at 36.

now at 40 I have just been diagnosed with diabetes. plus my husband was diagnosed with MS last year.

I am sitting here thinking my life’s done at 40. I am in pain, seizures, never getting to sleep properly because I never get to the REM stage of sleep, having muscles basically give up on me all of sudden and I end up in a heap due to narcolepsy.

I have maintained a good diet and honestly done as much exercise as I can bear and now I have diabetes as well.

plus reading all the crap some people are writing about people on PIP and poss of reform getting in just makes me fear for the future. I tried desperately to stay in work but had to admit defeat 3 years ago (I went before I was pushed).

i know a hell if a lot of people have it worse but I just want to scream.

my consultant thinks I have had all these conditions (except diabetes) since the epilepsy started or maybe before for the REM sleep disorder but doctors go so fixated on my epilepsy they could not see past it that something else might be wrong. He thinks they are all connected so he has come up with a plan to get them under control one at a time. At the moment that’s proving very difficult as a lot of the medication react with each other.

I'm sorry to hear this. It sounds proper shit. I can sense you're not one to give up, though. I hope you get some sort of breakthrough with your medical care. Keep fighting. Don't worry about Reform. X

OMG you poor thing (s) 🤗

I'm not surprised it's all getting you down.

it's great you have a consultant that's looking at the bigger picture though ' hopefully that will really help.

TRY not to worry about reform getting in & what might happen if they do. I know it's hard, but it won't help. (Currently relying on PIP too due to the stroke & not being able to work or entitled to any other assistance. PIP & smalls savings that were for my retirement (no private pension) so I do understand the worry.

Chat away, we're listening xx

Ok well this sounds something positive; you have a consultant who is taking you seriously and wants to do something that means your current health might not be this bad forever. There’s every chance that your life will be unrecognisable in a year or so and you’ll feel like it has only just started.

The point of you is that you are here, you are worthy, you are loved and you would be missed if you weren’t here. You deserve a life; a happy, pain free life, and it’s taking longer than expected but there’s nothing saying you won’t be able to have that in the future.

Sod reform and pip; between your health and your DH’s, you’ve got enough on your plate right now without worrying about things you can’t change, that haven’t happened yet. If you see anything about Reform or future mentions of pip from anyone who isn’t currently in power, then don’t read it or listen to it. You can worry about it when it happens because you don’t have the capacity to take that on as well.

I think it might help you with your mindset to find one positive thing every day (I know it sounds a bit wanky, but it does work). It might be that you slept well, or you enjoyed the feel of the sun on you as it came through the window. Or it might be that you joined the Home Library Service (depending on how easy it is for you to get out and about) and they delivered you a really good book, or you got yourself a pad & pencil and have been drawing, or writing. Or you had five minutes with minimal pain. Or you were able to go swimming. Or you enjoyed holding hands with your DH. Anything at all, it doesn’t matter how tiny it is, but it can’t be negative. Once you get out of the mindset that nothing is good, or positive, and that little things can be nice, it gets easier to see more positives. Just take things on a day to day basis.

YANBU - this sounds so hard. Random but I think a good Naturopath may have insight as to root cause and solution.

I am lucky because I have amazing husband who has been my rock, amazing son, supportive parents and I do try and take pleasure in the little things. Mine and DH sex drive has almost gone but we love cuddling up.

I think the last straw is I looked at travel insurance for me and DH as we are going abroad next year for a nice relaxing week with some friends who are bring their DS who is my DS friend. The insurance is going to be eye watering.

My consultant now has even mentioned suing as he is furious this has all been missed. My notes show that dispite obvious symptoms I was just brushed aside and told epilepsy for everything. I am not thinking about that yet though and I do think I would as don’t want tot take money out of the NHS. Will be making a huge complaint though.

Your consultant sounds amazing. How did you end up with him?

You have been through the mixer twice over. I'm sorry that things are tough.
I heard cannibas oil helps in some cases with seizures, medical thc.
On making a compensation claim, the NHS hold insurance for a reason, proving a claim against them with expert witnesses isn't easy, unless they admit liability. They'll blame clinical decisions.

im so sorry. I have very hard things going on as well and my husabnd is not supportive. Im sorry you are suffering so much.

Or she could get hold of a snake oil salesman.