Alternating between looking for a 'cure' & accepting this is how it is?

[KatyMac]

Handful of diagnoses (Fm/cfs/me/ibs/hm/allergies and more recently menopause and hypothyroidism)

I seem to swing (emotionally and intellectually) between searching out that miracle cure (which most likely doesn't exist) and accepting that I will.always be in this position with pain/energy/motivation

Obviously it isn't a real acceptance or I wouldn't have the searching bit!

I have had nearly 30ish years a lot of counselling to accept the situation/deal with the pain and I feel that was negated (or destroyed) by completing the PIP form, acknowledging and itemising my problems has caused huge trauma

Not quite sure now how I envisage the future

Well, which is it? It can't have been menopause for the past 30 years.

Why has filling in a PIP form caused 'trauma'?

I would say, that medical understanding is always moving on and there are things that we may be able to explain and treat fully in the future but can’t now. Try to manage your symptoms as best you can (self care, pacing, optimising sleep… etc), treat the treatable like hypothyroidism but don’t give up hope. We don’t know what the future may bring and it might have some good stuff too (hopefully).

That's unnecessarily nasty.
Loads of people have more than one health condition/ disability, it's called co-morbidity. And obviously the menopause is exacerbating everything else.
PIP forms are depressing because you have to write out everything that you can't do that most adults can.

OP, ignore this post. I think what you're feeling is very common, and I don't know the answer. The swing between acceptance and (even false) hope can be so hard.

I disagree, @CherryBlo ! I wasn't being 'nasty' at all. How rude! But if someone has been ill for 30 years, then menopause clearly isn't the op's reason for the illness...

Oh god I hear you.

I have chronic pain following an accident and in my everyday life I focus on what I can do,

Filling in the PIP form actually really upset me because it reminded me what I have lost.

I'm sorry for saying you were being nasty.
I still think saying "well which is it?" is rather rude to someone who clearly has a lot going on. It's something we get a lot, you see - people don't understand how you can have more than one chronic illness which all interact with each other and make each other worse and are also affected by hormonal changes. It can be very frustrating. And putting "trauma" in inverted commas implies you don't believe OP, or that she's being melodramatic, which is also unfair when PIP forms are really shit.

She literally lists seven diagnoses of which menopause is second to last.

Obviously it's not just the menopause

I like the "like mind, like body" Curable podcast. Helps me stay hopeful but also be realistic.

For me the focus is mostly on management at the moment. I can do some things to hopefully reduce my pain and manage my fatigue; it's by no means a cure but it does make me feel more hopeful

@somethingwickedlivesnextdoor LOL must be so good being physically tip-top and superior.. You are rude, you know you were aiming to be rude, what is so wrong in your life that you need to target someone to make them feel worse when they are asking for legitimate help. Rhetorical question by the way, I don't care, whatever it is, it doesn't mitigate your mean spirited response.

@KatyMac I also have a serious degenerative disability, and the truth is that we will probably never stop seesawing between acceptance and defeat. I totally believe you that the PIP form was traumatic, because it was for me too. It is designed on a psychological level to mess with people and it should be illegal. People have literally died and still been refused PIP just prior to death, for whatever killed them... it's bullshit. I believe you.

I think the best thing to do is focus on what we can do, and get support for everything else anywhere we can find it (groups, online, friends and family, more counselling),

Are there any targeted support groups for your conditions who can support you through the hellscape of PIP?

Thanks guys (well most of you.....I did say "more recently menopause and hypothyroidism" 🙄)

I will answer and research that podcast probably another time today is busy

The wellbeing courses are literally don't pay attention who what you can't do, don't talk about what you can't do, don't dwell on it - just think about what you can do; think about how you will feel when you manage don't think about the pain, think about the outcome & the PIP form? It's the opposite, how awful is it? Quantify it? How many times a week? How bad do you feel? Does it cause pain? How much pain, how often? Why do you think that it? What other problems do you have? It has caused me (& many other people) trauma

Atomic Habits may be helpful to you.

Where are you with PIP? I hear what you say about a different mentality for it.

All I can say @KatyMac , is Yes Yes!

I just applied for a blue badge and yesterday chose a disabled loo for the first time.

I take all the vitamins, do exercise classes and diet management etc.

I live in hope that there's an answer- HRT, vitD, high protein diet...

I have resolved to think that all those things ameliorate the condition and slow down decline. It's worth doing them to give myself the best chance of good quality life.

There's a possibility that one day something random will cure me- green tea on the same day as a mushroom sandwich, say.

But in the meantime it's all about managing the condition- good diet and lifestyle for the condition.

But I really resonate with how you feel. It's a constant battle between acceptance and hope and I have resolved to believe that that's ok- you can accept this is how it is while being hopeful things can improve.

Those forms are awful. I did them for DS years ago and cried afterward.

After my blue badge experience I know I would feel the same about doing PIP forms.

Anyone who doesn't understand that has no imagination.

The miracle cure you are looking for is radically changing your diet. If you haven't tried it yet, it is at least worth a shot. Cut out all processed foods and grains, go back to a ye olde pre agricultural revolution diet of eating just meat, fish, and non starchy vegetables.

For more information look at Georgia Ede on youtube, and follow the PHC Uk on youtube.

https://www.youtube.com/@PHCukorg

It sounds absolutely nuts that changing your diet can cure a whole host of modern lifestyle diseases, and yet it seems to work. And for anyone who thinks it is a fad/dangerous/nonsense here is a link to a recent texbook, https://www.amazon.com/Ketogenic-Science-Therapeutic-Carbohydrate-Restriction/dp/0128216174 , that pulls a lot of the recent research on it together.
And also look at STEMtalk, they have a lot of low carb researchers on talking about the science behind low carb eating.

Thing is, I'm inclined to disordered eating at the best of times
I do worry about taking on more rules.

Have you ever filled in a PIP form? They’re horrific. I have to do it for my son. You have to detail every single reason that you can’t live a normal life. It’s traumatic.

Reading comprehension not your strong point, eh? She said ‘more recently menopause’. Not in the past 30 years. That would be ridiculous.

If you had taken the trouble to actually read the OP's long list of other conditions it would have been blindingly obvious that the menopausal symptoms and having to fill in the PIP form are not the cause of the issue, but the straw that's broken the camel's back. So try not to kick someone who's already down, eh?

@KatyMac So sorry to hear of your troubles, I remember you from way back, and I really hope that you are able to find a way of coping. xx

I seem to swing (emotionally and intellectually) between searching out that miracle cure (which most likely doesn't exist) and accepting that I will.always be in this position with pain/energy/motivation

I think there's a middle ground where you accept that this is what you're dealing with right now, in the present without piling on the overwhelming "I will always be in this position". Things can feel more manageable when you focus on coping with today's shit (to put it bluntly!). Try not to anticipate what things will be like in the future; there may be better treatments on the horizon, etc. Maintaining a bit of hope can be a powerful coping tool.

We all know there are no miracle cures, so try not to torture yourself with endless online research. It's fine to try making some adjustments here and there but all this " just revamp your diet, etc." just leads to feelings of anger and despair when the miraculous turnaround doesn't materialize (and it never does).

Having to quantify and list your "limitations" is depressing and it's no surprise it's left you feeling sad for what's been lost. I'm sorry you're dealing with so much. Take care.

How recent is your hypothyroidism diagnosis OP? I found that all sorts of random symptoms cleared up within a couple of months of treatment when I was diagnosed. I hadn't even realised I had some of them until they went away!

Hypothyroidism diagnosed on Nov 23, dodgy blood tests since 2018 I started on 25 for 12 weeks then 50 for 8 weeks (then I stuffed up my next blood test by forgetting to not take my levothyroxine the morning of the blood test!! Brain fog!!)

So new test on 11th June & I might get a better dose!

I know you are right @CulturalNomad and I pretty much was there until the dreaded form; & I know it will take hard work to get back there again

I mainly eat root veg and meat atm no eggs dairy soya almond or coconut, no green veg no pulses or seeds my poor tummy need a break!

I was worried, but all I’d do was allow pre-surgery paperwork of possible CM and then say to DWP you do want to see discharge paperwork post op where it quotes operation for CM here you go. With spinal levels I’d never have heard of beyond the c’s. of the spine. Ended up seeing an L and a T level no one had the respect nor decency to talk with me about.

I presume they won’t argue where post hospital surgery supersedes the pre-op smiles oh dear up to you and maybe’s.

I mean I even believed a good old hysteroscopy was a diagnostic tool not just just some standardised routine ‘can take any’ biopsy sampler. It doesn’t seem to have predicted anything a nurse taking smears could have done any less. And allowed gynaecologists to abuse woman being put under ga (to sleep) whereas had a woman been wide awake they’d probably not accepted you had no fibroid to treat. Sorry I find no forgiveness for this behaviour.

KatyMac I am so sorry, this must be so hard.

My son has Chronic Fatigue and Chronic Pain and it is so awful.

I totally get how doing a Pip assessment is so hard because it brings it all into sharp focus.

Conditions change and vary so one can come to the front at a certain time and another can be less of an issue. I would continue to look for things that will help you long term while trying to make the most of the energy you have.

@Italiangreyhound filling in the pip was all what causes pain/brain fog/anxiety & I was all of them! 😂