Absolutely fed up

I know I know im not that bad compared to other people but i am sick of getting strange looks in work because I look healthy yet im in a lot of pain. I have been on the waiting list since January I feel like phoning up saying I can do cancellations. The most annoying thing is I can't sleep on my tummy and cannot figure out how to sleep on my back so im getting very little sleep. All my family say is not to mention it and just get on with it.

[tracylou4001]

I always say the same because they can’t see it , it’s like it doesn’t exist. If we had a pot on our arm/leg people would feel sorry for us then lol , talk about hidden disabilities this absolutely is. So sorry you’re struggling hun x

[Hidden in reply to tracylou4001]

So far the advice ive been given is you will sleep standing up if you are tired enough which doesn't help. Asked for movement breaks but since im in training three hour team calls with one 10 minute break is not enough. I had to stand up which im sure looked weird.

[PaintToughTed in reply to Hidden]

Hi there, I’ve found a standing desk really helps (motor powered, loads on amazon etc). The heights easily adjustable to so you can easily switch between seating/standing in just a few seconds. They’re not massively cheap, but maybe work might be able to help given it could be argued it’s a reasonable adjustment?

[CryBaby91]

Are you using a stick at all? I wouldn't be half as active without my walking stick! It also might be worth buying a sunflower disabled badge? You wear it round your neck to signal you have an invisible disability. Employers also have a responsibility to make reasonable adjustments for employees with disabilities and health issues, if you have proof from your doctor of adjustments you need to be able to do your job better that would really strengthen your request! Like a letter explaining long periods of standing up causes pain and fatigue, so regular breaks or the ability to be seated would be beneficial. Speak to ACAS if you hit a dead end with them, or even citizens advice.

With sleep, i cant sleep laid flat anymore, like at all lol. I am on the couch for this exact reason, it is way too painful in bed. I have to sleep kind of half sat up lol so i have a big L shape pillow and two other pillows which keep me half sat up but comfortable. The L pillow also helps me sleep kind of on my side but not fully, stops me rolling on my back and hurting myself lol. I also use a big pillow between my legs to support my pelvis, and one under my arm to keep my hand/arm off my stomach as the weight causes pain. Get yourself a nest and try curl up in it it's hard but with enough pillows and something hot like a hot water bottle or heated pad you might be more comfortable xxx

[simples123]

hi, im so sorry to hear your in so much pain.it makes me so cross that people dont believe us because its not visable....trust me im even getting eye rolls off my husband!! If only they could understand.

Have you tried a tens machine? Iv recently bought one and its been an absolute godsend when the codiene and heat pads arent working enough. Plus i can wear it to work as its discreet. Also a support/ maternity pillow could help a little at night.

I hope you find some sort of help with the pain 💛

[tracylou4001 in reply to simples123]

Hi yeah I do have a tens machine and as uou say it does numb the pain alittle and I do wear it to work aswell. I juat get to a stage where the scar tissue is that thick it just sticks everything together which makes moving around very painful and difficult. Thanks for all your advice though, I finally feel like I’m not alone and it’s not all in my head which I have been told on numerous occasions. I hope you get some answers too x

[Washington1]

So sorry to hear you are not getting the support you need. I think it's very true, that unless people see your disability, they find it hard to believe. I know it's unfair. I know someone who has lived with a terrible back condition for years, but it was when she broke her arm that people gave loads of sympathy, which was ironic as the pain from her arm was not nearly that great in comparison with her back... and lasted for a minimal time. Fortunately, her back pain is much more manageable these days.

I think getting a doctor's paper for your work situation might be a good place to start. Hopefully you have a good doctor who will help in this regard. I used to be a person who just got on with it, as your family say, but ended up getting very ill, so I would say to put in measures now to get the support you need to hopefully avoid things progressing and you getting completely run down in the bid to cope with it. I also suffered a great deal with insomnia, and it is very difficult. A few nights are manageable, but when you spend months on end not sleeping due to pain, it's no joke. A tens machine is a very good idea. I wish I'd invested in one earlier than I did. They don't take all the pain. but they do help. Main thing is to put the tens machine on at the first twinge of pain. Don't wait until you are in significant pain as the tens will not work nearly as well then in my experience. It needs time to block pain receptors in the brain.

I hope things improve for you soon. I know some women do just find things get better over time and I hope this will be true for you. xx

[Hidden]

A tens machine sounds amazing I will have to look into that. No oddly walking is fine its sitting too long or lifting boxes or bending to floor level.

[Ioanaap]

it sounds to me like you are living and working around a bunch of idi"ts; if their behaviours have gotten you to start doubting your own pain, that only you can experience in your own unique way; and only you can be affected by and suffer because of it.

I'd advise you to cut these toxins of people out of your life as much as possible because the healing journey is a long one and you don't need a bunch of ignorant people (that would rather gaslight you than lift a finger to help) keep sabotaging your healing. It is as much about physical pain as it is about mental health pain and feeling lack of support left and right can just make it more difficult to navigate for you. I hope you find the strength to stand up for yourself and keep fighting for a treatment plan that works for you.

Everybody is different, our bodies and circumstances are different. Therefore we all need a varied mixture of things to help.

In your situation, I don't know where you're based, I would even call a GP and ask for some talking therapy or something along those lines, in order to get some professional validation and understanding of how wrong the people around you are and how toxic. It doesn't matter that they're family, that behaviour is unethical. Sorry if I keep going about this but for me, removing or not letting toxic family members opinions affect me anymore, and starting to not give an f about that has been half the treatment.

You've got this, you're already strong.

[Hidden]

im on the waiting list for talking therapy but honestly the best I felt was swimming on holiday once I get paid im looking for a gym with a pool.