Teetering on the brink

Cherryfudge

Some really good advice above. I'd forgotten the 30 days grace period, that might be useful. And it's appalling that your records are in a mess like this. I knew of someone whose original records were destroyed when she changed her name, so she had to go back to the start on a waiting list for treatment. I wonder if there's an ombudsman? However, you have enough to cope with without chasing that up.

Sending hugs.

Cherryfudge

https://forums.moneysavingexpert.com/discussion/comment/81860622#Comment_81860622

There is an ombudsman but you have to complain to the NHS first, and after that the wait for the ombudsman can be up to four months. :( However, a complaint might set the ball rolling, towards the referral you need.

Would it be an option to continue the medication but put in place measures to protect yourself?

You said they call it the 'suicide disease'. Is this how you are feeling? That's definitely one to raise with the GP, or if you would prefer, someone like the Samaritans.

More hugs. I hope you can get some relief from the pain and some sleep tonight.

EatingBeans

No I am not suicidal, but yes it is called the Suicide Disease because the pain is known to get progressively worse and the treatment stops working. It is known to have a high rate of suicide for that reason. What I couldn’t fathom is how given that, the GP could just so casually say “oh well” and not only crush any hope of giving me the medication that I believe may help me, but also listen to me explain the impact it was having on my life and not once ask after my mental health or if I had any support. She made me feel like I’d already reached the end of the line and I was supposed to just go away and stop making a fuss. Honestly, if I had the energy I would be making a complaint. Thankfully, I have been on to a UK TN support group and they have confirmed the drug I want to try is not just a US drug, it is just my GP is ill informed. Getting it will likely still be a battle but it restored my hope a little.

Today has been a very painful day. I was supposed to go to see the debt counsellor at the CAB but I’ve not even been able to make it to the sofa or send work my fit note. Honestly, I still haven’t even made my bed yet - I just threw a blanket over the mattress and have been sleeping on top of that.

So today’s goal’s are:

• make my bed
• Send fit note to work

It sounds like a silly list to even make but I need a realistically achievable list and then I can build from there. 🤞

Cherryfudge

That looks like a well-targeted list. I understand being realistic with what you can aim to do, and also that the GP's attitude was completely unhelpful. Perhaps the day will come when you can cut and paste bits of this diary and send them to the practice manager.

Did you get your fit notes to cover a longer time? If not, that might save on admin in the future.

Online support groups can be fantastic. DH joined one for his condition and has found it very useful. I'm glad yours is clued up and has been able to reassure you about the drug being licensed for the UK.

northAthenian

'Team Beans' member here.{need a beans emoji}

i'm sorry it's particularly sh!te the noo. just do the wee bits you can.

chat to us when you have the energy, vent when you need to. you're quite inspiring you know 💪

joedenise

Is there another GP at your surgery that you could see? Most practices have more than one. Might be worth seeing a different one if you can.

Gentle hugs.

EatingBeans

Thanks all.

I don’t think i’ve ever been called inspiring before! 🤣 I feel like I am just scrabbling my way through life and hoping for the best. Haha

So far, I have checked one thing off today’s to-do list - I sent my fit note to work. It’s for a month this time but the GP didn’t even discuss timescale with me. It was such an awful appointment I am just going to assume she was having her own bad day and try and put it behind me. Yes, she did make me feel absolutely hopeless for a tiny while, but I have picked myself back up a bit now and I am trying to look forward and find some positives.

As it is, I have managed to do some dishwashing today - yes, having the dishwasher still makes me smile - and I have spent quite a while “up” today (sitting on the sofa rather than being in bed), so that is an improvement. Big Cat is doing a bit better today too (he is curled up on my lap as I type), so that is good news. Onwards and upwards! 🫘↗️

Cherryfudge

But you are inspiring - that sheer picking yourself up and taking another step forward takes real strength of character.

A month of fit note is useful. Much better than week by week.

Great to hear that you and Big Cat have both been doing better. In further good news, January is nearly done with and February is nearly spring. Actually I start spring whenever the feeling of it comes into the air and quite often that's February, even if there is snow in March!

Is this the beans victory logo?

🫘↗️

Humdinger1

Yes, deffo inspiring! It's easy to carry on when everything's peachy. You're seeing light when it's harder and sharing it. Onwards and upwards love Humdinger xx

EatingBeans

aww bless you, thank you. I honestly don’t know how I’d do it without all the support sometimes. You are all awesome!

Onwards and upwards indeed - which is what 🫘↗️ was supposed to refer to btw. 🤣

I am pleased to report that I smashed my whole to-do list yesterday! Yep, that’s right, I send my Fit Note to work AND I made my bed! 🤣 Go me! 🫘🎉 (Can you tell I just discovered the beans emoji?🤣)

So, not wishing to completely dismiss the GP’s suggestions as complete nonsense, I thought I would at least try reducing my meds a little and see how that goes. Am I going to completely stop them dead, hell no, because I know how dangerous that is with the meds I am on, but since they aren’t completely deadening the pain at the moment but they do almost kill my mental ability to fight through the pain, I thought I would switch it up a bit. Right now I really need my brain to help me through the debt/money decisions, so more pain it is. One less tablet taken last night and just like that, I have woken up in significantly more pain, but I feel more awake. How long I can bear it like this I don’t know, but I’m going to give it a go.

So, my first step this morning has been to sort the cat and post him back in to dd1 so I don’t need to worry about him. Next, I have done another load of dishwashing, had some breakfast and grabbed a coffee. Now as I drink the coffee, I thought I would come up with a plan to make best use of my time as I don’t know how long I have before I have to give in and take more tablets.

Priority 1: Make it as easy as possible to avoid spending anything in the next few weeks. (Clean kitchen/Meal prep + clothes washing because getting dressed in the right clothes helps me feel more able to do things)

Priority 2: Try to reconcile my accounts and come up with a budget

Priority 3: Give me and the dogs an MOT (bath, nails, ears etc)

Priority 4: Focus on ways to bring money in - find number for PIP, ebay listing, surveys etc

Am I going to get it all done today? Obviously not. But, identifying my priorities helps me focus the energy I do have on the most beneficial things.

So, coffee drunk, time to start cooking a big pot of rice whilst I finish cleaning the kitchen. 🫘↗️