Spoonies... friendly support for anyone with chronic pain & fatigue

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

Spoon Theory Here

Old thread

I can't remember how long our school run is, but it's increased by about a half now as DD has moved on to junior school (waaah but she's my baby!). I think that went a long way to contributing to my relapse TBH, I'm feeling a bit better now I'm used to it although I still need to rest longer when I get home.

Bit strapped for time now as on break and should really be resting (staff room is busy today :() but wanted to offer hugs and spoons to all.

Empathise with those with POTS, mine is quite bad at the moment. I find it hard to explain to people as people haven't heard of it, but then many have such a bad view of ME so I don't know which one to say...

I explain my Pots as 'autonomic nervous system dysfunction'. People have no idea what it is but anything where your nervous system doesn't work properly sounds BAaaad!

If they look vaguely interested / need to know something specific I say 'my veins don't work properly so they don't help pump the blood around my body, which means my heart has to work extra hard.

It gives me heart palpitations and very unstable blood pressure.

...and the blood still doesn't get around my body so my brain and other organs don't get enough oxygen sometimes and it makes me very very ill. Oh and it causes lots of other problems as your autonomic nervous system controls alot of things but it's all v complicated and dull' then and change subject!

What I don't say is 'I've get low blood pressure' as people can't understand why it could be a problem and look at me weird!

Why are EDS/ Pots/ ME etc so bloody hard to explain?! I yearn for something that people understand.

Oh does anyone mind if I tell you the latest in the work saga? HR pushed me into mediation which I agreed to and had stupidly started to hope maybe it would help, rather than being another step closer to firing me.

So I phone the mediator as requested for a intro call, and he turns out to be a lawyer who specialises in sports disciplinary hearings(!) and no disability experience whatsoever. So after I say maybe two sentences he backs off massively and then refuses the case. He told my company and of course I got a horrible accusatory mail about 'why would you derail the process like this? How could you influence him in this way etc etc'

I'm gutted and no matter which way I turn I'm painted as the evil bitch. I refuted this but nicely as everything's an email trail, and they've replied to say if it wasn't me that did it then they want the mediator back on it.

They are so blatantly transparent about dismissing my disability that they don't even get a mediator with any disability experience... I wish I could forget about my shitty body as much as they can.

Shit shit shit. I'm getting really anxious and I feel paralysed with fear and powerlessness. Why do people persecute disabled people, does it give them some kind of fuckinf kick? She's down on the ground, let's kick the cripple for dating to bring her imperfections near us...

Sorry. But it's so hard to keep on fighting.

Can you suggest a mediator? Or three? Find some that specialise in disability discrimination and suggest them.

I did have a look and yes, it's completely possible to find ones that either specialise in or have experience in disability in the workplace.

However I'm hesitating to offer up alternatives as I suspect it will backfire as

1. They're still in the 'blame blame blame her (burn her the witch!)' mode and will be seen as me having created this situation in order to push my own mediator (quite how I'm supposed to have manipulated and influenced this senior partner of a law firm is beyond me!

1. they will use it as a way to make a mockery of the whole process as they can always say the mediator was biased and therefore not agree with any outcomes...

I think it's already crossed her mind that the mediation might not end in their acceptable outcomes (me leaving or me miraculously recovering and going back to working a 90hr week with no adjustments or complaints)... There has been much made of the fact that the mediator cannot impose any outcome or solution AND that mediation is 'without prejudice'.

Apparently that means anything they say cannot be used to persue a legal case afterwards.

I do need to check up on that as that's basically an invitation for them to ignore equality law... And if they do say shockingly disablist or discriminatory things I don't see why they should be allowed to say that without fear of any consequence. I hope they wouldn't, but I can't rely on their good nature otherwise I wouldn't be in this position :(

Currently HR are still harping on about making the first mediator come back (which he won't, he made that very clear), and at some point they'll have to recognise that, and I will encourage them to find another. If they have absolutely no success, I guess that's the point at which I'll volunteer some suggestions.

It's just I don't know if I can keep going with only a few adjustments having been done in the 6 mths they've had, and the awful stress... But I have to keep going somehow.

I don't have the health/ time/ energy/ resilience to keep fighting. Bleughhhhh.

Hello I think I fit in here :) EDS type III. Thankfully I've been diagnosed fairly young, I'm 20, and they'll be looking out for it in DD, who is 6mo. I'm a full time uni student in my 3rd year so most of my spoons go on dissertation work lately!!

I've always been very hypermobile, my physio knows me by my knees. Ever since I could walk I've stood with my knees hyperflexed, to the point where it is uncomfortable to stand normally. Lately I've been subluxing my shoulders a lot... The pain that causes is really not pleasant!

Mines awful too fuzz, i think it has something to do with the change in weather? Fainting is about the same, but the yucky dizzy feeling is there constantly.

Hi moomin, welcome!

Misc, have you tried posting in legal or employment?? Might be an expert around who can help? Or even speaking to disability rights uk?

It will all work out they are the bastards in the wrong and it will work out in your favour eventually :)
What adjustments are you waiting for? Or have you not even had an assessment?

I'd not thought about it being weather related! Now that I think about it, it's worse when it's hot usually, but I'm struggling generally ATM.

I think i read that its a change in pressure more than temp, mine is always at its worst right before a thunderstorm.

Really struggling today. I never thought it could be connected to the weather change, but it would fit with all the increase in symptoms and I haven't stopped shivering for the last two days, no matter how many clothes I put on I'm always cold.
If only the nhs could prescribe us all a nice holiday somewhere hot so that we could feel better!!!!

Misc, I really feel for you. I don't work, but am battling school for my daughter with her illness. They don't seem to believe she is ill, and even called social services to say that they were concerned. I know what it feels like to have to fight while trying to put on a front showing you are keeping it together, when all you want to do is give up and go to bed, but you can't. It certainly feels sometimes that people are kicking you you are down.

With the POTS thing I just say that my heart rate rockets AND my blood pressure drops, and it's the combination of those that makes me dizzy/collapse.

I nearly collapsed on the school run a couple of times this afternoon - not been that bad for a while.

I reeeeally don't want to work tomorrow. I'm not enjoying it at the moment. I'm consumed by pathetic jealousy about EVERYTHING, like the colleagues who are making leaps and bounds in their jobs because they can, unlike me :( and you know what I just feel like a pain in the arse now. Not a valued member of the team any more. I do so few hours that it's barely worth me bothering, it seems.

That's terrible miscellaneous :( They shouldn't be able to treat you like that. And a mediator shouldn't run scared and leave behind you to take the flak, eather :( It's completely inappropriate for them to blame you for their choice of a mediator without relevant expertise.

So with you, fuzz. I've just had some confidence-lowering blows just as I am realising that I have to hunker down and do the absolute minimum none of this paying attention to my career and trying to improve myself malarky. Just get the minimum done to a minimum standard. Things are crazy at work. I never should have agreed to do this thing I am without support but I didn't know it would be without support! They were hiring somebody. He starts in Nov, and I've been on my own for two months now. Really feeling the lack. Came down with a UTI at the end of last week, right when things came to head. I doubt that is a coincidence. I think my immune system is taking a hit from the stress. At least saying I was ill got one thing pushed onto someone else, that I would have otherwise been doing.

With POTS, I didn't know that was what I had until a few weeks ago :) The old Dr had just said "some kind of autnomic nervous system dysfunction", so that's what I told people ("I've got a dysfunction of my autonomic nervous system"). That sounds fairly serious and impressive. I'm quite startled that I've seen so many physicans and told them that (I had a faetal health specialist, a cardiologist, and an anthesitist on standby for labour, as we had no idea what my heart would do), and no one wondered about POTS.

I've also been massively cold! Had no idea that could be related...

Thanks so much for the lovely and wise support, it's such a rarity to 'talk' to people facing the world with the same problems.

I totally empathise with the rubbishness of having career stopped in its tracks and watching peers and those beneath just zoom on past. It's painful to be limited and see others doing what we could do if only we didn't have these draining conditions. Bleugh.

I just did parents evening (reception year) and the teachers said that ds gross motor skills are lagging behind quite significantly. Nursery mentioned that in sept too... I initally thought was to do with ds not having alot of physical play as no h and helpers all quite girly girls... But now it's set alarm bells ringing re EDS. :(

Oh no misc :( are you going to see a doctor about assessing him?

Horrible day at work today, dizziness very bad indeed. Thankfully I managed to say I was struggling and change my shift around a bit. Couldn't do that with deputy/manager - supposed to but I just find it so hard.

I've got my MRI scheduled! Weekend after this one. Very nervous.

Oh, no, misc -- but at least getting these things checked out early and knowing is better than not.

Good luck with the MRI murmur Are they always scheduled so fast?

I have my nerve conduction studies tomorrow morning. Am nervous. Am nervous they'll find something, and equally nervous they won't

Wishing everyone best of luck with all the investigations and such!

I was brave and booked a dr appt. I am not entirely sure what the point is, but I need to tell them I'm struggling. What they can do for me I have no idea.

I am veeeery slightly considering asking about fibromyalgia, though. A couple of people (including professionals) have commented that, since pain is a bigger issue for me than fatigue (both bloody awful, but YKWIM), and the pain has particular locations, CFS might actually not be the most appropriate diagnosis for me. But I'm not sure if it's worth looking into this.

I'm also going to talk about my mental health problems, because my anxiety is rocketing again.

Good luck with the nerve stuff, kinky. I was really surprised that it was scheduled so quickly -- so I have no idea.

And good luck with your Dr appt, fuzz! I know what you mean about not sure what the point is, but it is probably good to keep them updated. I think fibro and CFS often co-occur, so it wouldn't be surprising to have it.

My pain is weird and not like I read about fibro -- I think that has specific points, if I recall. I get a strange 'crushing' sensation in my hands, and in really bad days, my feet too. Super weird was when I had the UTI earlier this week, my fingers were in agony when I peed! Even worse than the down-below, I actually screamed the first time. I can't think of any reason why a UTI would cause my fingers to hurt, so it must be more of the same crossed wires or whatever. Good news there is that I've finished the course of antibiotics and it appears to have cleared up.

Sodding hell I'm typing from hospital. Had stomach pain which got dramatically worse this eve. Worried about hernias re EDS. called 111 who were awful, paramedics great but wouldn't let me stay at home with ds... Was a nightmare but found someone (old nanny) who came round ASAP.

Am in floods of tears as poor ds will wake up with me just GONE... he comes into my bed early morning and can imagine him searching for me.

I want to be at home :(

Had morphine which has taken edge off it (so I can type) but still hurts like hell and don't know what to do to make it stop.

Oh no misc! :(

Your DS might be fine - children are surprisingly adaptable. And maybe he'll be really excited to see the old nanny?

Hope the pain relief works better soon!

Oh, no, misc! :( Hope you feel better soon!

Sorry to hear things are bad. Hope they sort you out soon.

Well that's me at hospital now. Appointment at 10.45

Sorry to hear you're in hospital misc how are things today? Have you spoken to DS?

Everything normal.

No idea where that leaves me