AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

Actually I’d love to have a thread on the board where we can share our achievements no matter how small. Managed the washing up today? Amazing. Walked to town for the first time in months? Brilliant. I would never be brave enough to post such a thread on a main board because most people wouldn’t get what it means when you manage something so small that most people take for granted.

Yes, a cheerleading thread would be amazing

Many years ago I went to a therapy group for people with chronic illnesses which was at the mental health team, there wasn't another physically disabled person there.

First session done, our "homework" was a big achievement for the week. Second session was humilating. My achievement was going to the post box on, what was then for me a "bad day", I was at the bottom of the list of things achieved. I was publically humiliated for being bottom of the list. At the end I was told I clearly hadn't bothered and next week they wanted a genuine accomplishment - others had things like going to South Wales shopping, or swimming or running, things that were impossible for me. It was horrible. The other premise was we were not to use the word "disabled" as it was discouraging us from getting better and offensive to those actually disabled.

When I was later admitted as a patient it was exactly the same sort of attitude. Oddly it didn't apply to mental health though. Wierd.

A persons accomplishments are exactly that, accomplishments for them. See it on MN all the time. Wasn't there a thread about being forced by work to do 1,000 steps in lunch time and everyone joking about it recently? I'm lucky some days if I can manage 100.

It's hard to feel proud of yourself when everyone seems determined to put you down by showing off about their massive accomplishments.

The legal definition is “ What is classed as a disability? In the Equality Act a disability means a physical or a mental condition which has a substantial and long-term impact on your ability to do normal day to day activities. ... You are also covered by the Equality Act if you had a disability in the past.” long term meaning more than 6months usually.

That's really helpful to know. I would be classed as disabled then. Which given how horrendous my HR person at work is, I might have to drop into a convo if she treats me like she did this week.

Come on @Mnhq you've many, many women here asking for a very small thing. What's the delay?

pickle totally agree.

Exhaustion is massive. I go to work for four hours. It takes me another four to recover. In pain the whole time.

Has anyone has nerve ablation in their facet joints?

@Becca19962014 I'm so shocked and angry about how you were treated 💐

@picklemewalnuts

I don't think *@mnhq* actually does anything.

Maybe a thread in site stuff, referring back to this one, would do the trick?

I'd like to add to the list- exhaustion. Being in pain is exhausting. Doing things differently because of pain is exhausting. Thinking about pacing is exhausting.

I'd also like somewhere I can come and grumble about symptoms. I don't obsess because I worry I'll make it worse, but it would be nice to tell someone I feel rough. Nice to be able to comment in passing that my muscles and tendons seem to have stiffened up for no good reason, and everything is even more effort than usual.

I mean, I don't want to be a debbie downer, but I've no one else to tell. People get bored/aren't interested/don't know why you are telling them if they can't do anything.

And another thing- fear. Fear for the future, fear of it getting worse, fear of one day having one pain too many and not wanting to go on.

Fear that I won't be able to be even remotely independent, and then what will happen.

Fear of having to eat my husband's cooking if I'm not well enough to do it!!

Here is my original thread in Site Stuff. I've just referred them back to this one and they've previously received a link to the thread in general stuff too.

www.mumsnet.com/Talk/site_stuff/4160401-Can-we-have-a-chronic-pain-topic-please?watched=1&msgid=105217158#105217158

please register your interest here too

www.mumsnet.com/Talk/site_stuff/4160401-Can-we-have-a-chronic-pain-topic-please?watched=1&msgid=105217209#105217209

I've nipped on and commented. Also linked this thread.

Another thing to add to the list!
Uncertainty! I hate not knowing whether I'm foggy and unfocused because of Fibro, or whether I'm just a bit dopey. I mean, that makes no sense at all, but I keep thinking 'I used to be able to do this, come on, snap out of it!'.

I wonder whether I'm slow because I don't have much to do, I've lost it because I didn't use it. But I don't have much to do because I've ditched everything that's not essential because I just can't process it all.

And another one (sorry, OP, you got me started!)...

Damn, I've forgotten.

Hey pickle I hear you on the fogginess!

MNHQ, how is the thinking going?

I want to type so much to underline my respect and understanding to so many posters, here on AIBU, and on DunravenBadger's thread, but it seems so futile, unimportant, undocumented,... when nothing gets heard or addressed. Just another thing that's frustrating.

@MNHQ Can you share your decision please?

I've remembered what I wanted to add 😅 apart from shockingly poor levels of concentration

The frustration of having pain which is made worse by sitting (lower spine, sciatica) along with exhaustion! I just want to sit down for a rest, but if I do I'll pay for it later!

@picklemewalnuts I'm with you.

Naive me once thought, oh a 5 hour drive no problem I'm just sitting. OH MY GOD. The pain the next day 😩

It's most comfortable for me to lie flat with legs up and feet on floor to relax my lower back but that's not likely with a toddler

Come on @mnhq - look how many people need this.

And and... on this thread people will recognise that awful moment of indecision when you need to get up out of your chair/bed, but you know it's going to hurt. The longer you sit/lie, the more it will hurt... so you give yourself a pep talk, brace yourself and stand up muttering curses under your breath!

Yes to the pep talking, over and over again and every day multiple times, for the silliest reasons, seemingly.... And the fear for so many things you never knew you would/could fear, the tears over lost dreams, the adjusting of yourself to others, or of adapting your surroundings to your needs...

AND yes to the uncertain smile of recognition, when you're understood without ever really needing to explain a lot, a place with people who don't expect you to be Miss Nice always, and no need to pretend everything is alright.

I have been known to pep talk my own legs "come on legs, we can do this" before staggering out of a room (usually for a wee) like Bambi learning to walk.
Good friends don't mock me for this.
If I'm with people I don't know that well, I pep talk my legs silently.

I'm interested if there is a board about the impact of chronic pain conditions on relationships, particularly partners and also your relationship with food. It's been a real battle for me not to comfort eat. And I've actually managed to bring my BMI down from 30 after I gave birth to 24 as I don't want weight to be given as a reason for my pain

@doadeer

I'm interested if there is a board about the impact of chronic pain conditions on relationships, particularly partners and also your relationship with food. It's been a real battle for me not to comfort eat. And I've actually managed to bring my BMI down from 30 after I gave birth to 24 as I don't want weight to be given as a reason for my pain

Oh dear god yes. No matter what we do sex just hurts, there is no position that won't hurt my joints. So strangely enough I don't have much desire for it, and that causes so many problems.

As for the eating, my BMI is now 45. In the year before the pain started I had an eating disorder and a daily exercise habit (the two were linked), and going from that way of living to comfort eating and not moving means the weight piled on. So of course the doctors keep pushing me to join weight watchers, and I'm finding it so triggering because of my past.

Oh I'm so sorry @MedusasBadHairDay as if you need more negative feelings piled on 😢

I used to love wine but since all the coedine I've been on, even though I'm off it, I get the most intense headache. I'm trying to be healthy all the time so it's very difficult to find "vices" when I feel so down.

How best to get @MNHQ to respond?

They have said twice they are thinking about it but we don’t know
When or if will get a firm yes or no. Or if waiting for magic number of posts before it’s allowed.