nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

We want to hear from you: please tell us about your experience of the online community.

Anger

jinnty

Hello, I hope this post finds you all safe and well as can be. But, as I write that, in a way, it’s a total joke. To be well as can be, what the heck does that mean. It’s now getting on to half 2 in the morning, and I’m lying here, crying because I’m really really angry at my bloody body, and angry about letting it getting to me, yes I’m in “pain”, brackets, because just putting pain doesn’t cover how it is. Everyone keeps telling me to accept that I’m now disabled, through no fault of my own, so just to accept and manage it. But, how can we, when instead of having a full nights sleep, we constantly have the huge minority of sleep, awake and either, pacing, massaging, using heat pads, or like me screaming because even just typing on the iPad causes extreme pain. So, yes I apologise to everyone about the well as can be, if tonight is your horrendous night. Sorry about the rant! Best wishes and thoughts to you all

Find more posts tagged with

Comments

FireTiger

I feel your "pain". No pun intended! Sorry to hear you had a restless night.

I cry and wince in solidarity with you and continue on this journey towards a possible solution ?

leeCal

I have had sleepless nights with pain from teeth mainly but this last time I had the offending tooth pulled out ASAP, within twenty four hours of it playing up. I can’t stand toothache at night and won’t tolerate it longer than I have to. It cost me £170 to have it extracted today! Mainly because I had to go private, couldn’t get a nhs dentist at least not this side of Christmas.

anyway back to the point, you have my deepest sympathy @jinnty. If only all pain could be rectified as simply as mine today.

janer1967

@leeCal have you tried orajel when you have toothache it's really good instant relief especially the double strength available at chemist

The normal strength can be bought off amazon

L_Volunteer

Hi @jinnty

Thanks for reaching out to us. I always appreciate how much courage it must take to reach out. I am really sorry to hear you are struggling. We are sending you lots of care and hugs. Is there anything specific that we can do to support you? or do you simply need a virtual shoulder to cry on and an ear to listen?

Either way, we are here for you. We appreciate that some days are tougher than others and it is okay not to be okay. Though, I do strongly believe in the phrase fall down 7 times stand up 8 times. You have got this

jinnty

@L_Volunteer

Thank you all for all your support and care. I’m sorry, but I just needed to express my feelings. Just, I always try to be “Up “, but sometimes it just gets the better of me. Thank you all again.

jinnty

@Libby_Scope
thank you for your kind words. Unfortunately a lot of the things I like to do means using my hands, elbows, shoulders lol , so at the moment this is where a lot of my pain is, limbs and others. But, I will be “fine”, the buzzword a lot of people use, and will try to just keep going as long as I can before another flare up. Thank you again for reaching out to me. It does make a huge difference when you know, you won’t have people saying “it can’t be as bad as your making out”, the usual a lot of disabled people hear. But, tomorrow is another day, and I can only try to get through tonight until I see what tomorrow brings me. Take care and stay safe.

leeCal

Thanks @janer1967 For the tip! ?

chiarieds

Hi @jinnty - there's absolutely no need to apologise, as many of us with chronic pain understand what you're going through. My last 2 nights have been like yours, at least as far as being awake at 2.30 am goes.

They say that anger is one of the phases you go through in the path to acceptance, yet I rail against some of the words used. I've said before on the forum, that, as I have a genetic disorder, perhaps it's easier for me as I deteriorated somewhat gradually. Whilst I know I probably am disabled, I rarely consider myself as such, just someone who has certain conditions.....so no acceptance there. Also I feel that emotions often come up unbidden, but more so when pain levels increase. I find that I sort of cope with the 'normal' level of pain that I have, but anything extra on top of that is very difficult. This can be something else going wrong, & often any additional stress, which seems to be my worst enemy.

Take care of yourself, & I hope you have a better night's sleep tonight.

chiarieds

I'm in agreement, I 'think,' with Libby, tho I tend to say concentrate on breathing correctly, which we as adults seem to have forgotten to do, rather than necessarily deep breathing. I used to teach this diaphragmatic, or abdominal breathing as a physio student to help my patients relax, &/or combat pain. Please see: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf You don't have to have a pillow under your knees, just find a comfortable position. This 'usually' helps me too, & is worth practising.

chiarieds

Hi @Libby_Scope - no, I've only ever used diaphragmatic breathing. LeeCal has posted breathing used in meditation, which I'm sure also helps many, but I feel concentrating on counting the number of breaths in/out may be distracting; similarly 'deep breathing,' as I feel breathing correctly is more helpful. If you watch a baby breathe, you will see they do this automatically, which is why I say it's something adults have forgotten.

Diaphragmatic breathing has been shown to induce relaxation, help with anxiety, & reduce stress, & something I also used at the beginning & end of 'back' classes. As to PoTS, I wouldn't claim it could possibly help with that. Speaking personally, it doesn't help my orthostatic hypotension, which, depending which way you look, could be due to Ehlers-Danlos Syndrome, or also the dysautonomia I have due to EDS in my case being associated with Chiari 1 Malformation. In other words, PoTS has many causes, & even the EDS specialists can disagree on them; I disagreed with one in particular that said Chiari 1 Malformation was not associated with Hypermobility Spectrum Disorder (HSD) as it's now known, nor EDS some years ago (he wouldn't even mention dysautonomia, tho I had, rather poor vasoconstriction in the lower limbs when upright in those with EDS). As dysautonomia is when your autonomic nervous system (over which you have no control) isn't working properly, then no, any kind of breathwork can't change this.

Again, I would suggest you to listen to Dr. Anne Maitland, who speaks at both EDS & Chiari 1 Malformation conferences in the USA about MCAS, PoTS & orthostatic intolerance (mainly in those with a connective tissue disorder). Have just watched this again; if nothing else, listen from 13mins 30 secs. :

https://www.youtube.com/watch?v=wz1Lb2rjHag&t=31s

Deecov

I have Fibromyalgia, nerve damage from failed back surgery and am now waiting for a new hip. I get your anger and wish I had a miracle cure for you but all I can offer is support and understanding and empathy. 💜🤗

Tori_Scope

Support, empathy, and understanding are always welcome here @Deecov

It's good to have you with us! I hope that you don't have to wait too long for your new hip.

Molliepw96

How do people manage their emotions especially when you’re upset?

Ross_Alumni

Great question @Molliepw96

For me, I think it's important to take a few seconds to consider the situation AND WHY it has upset me. Taking a few deep breaths too can help to calm you down and prevent you from perhaps saying something you otherwise wouldn't.

What about you?

Molliepw96

I struggle to express my emotions and then end up crying

Deecov

Me too, Always tears and then I can hear my mothers head in my voice saying keep that up and I’ll give you something to cry for. As an adult of course I can look back and think but she never did so it was an empty threat but the inner child is still very frightened

jinnty

Hello again everyone.
Thank you all your replies, as as terrible as it sounds, it’s still “nice” to know that you’re not on your own, you’re not being accused of overreacting, or blowing it out of proportion. As 1 or 2, of you may have read in a previous post, I got the shocking news that at 53 years old, I had a genetic disorder, Larsen Syndrome, and I knew nothing about it. I think because of all the lockdowns, and the ongoing stress with this horrific virus, a lot may also be a small part because of not having our usual outlets. Unfortunately, I really really need another body, one that won’t stop me doing something I did 5 minutes earlier. Also, playing on my mind, I was in hospital a year past October, and I’m still trying to digest, the dr asking me if I wanted to live, considering all my problems, whether it’s worth intervening and maybe I should just give in. And yes, after all this time, still have doubts and thoughts if he was right, am I a waste of space. Am I costing everyone a lot of money? I didn’t need intervention, but I have in the back of my mind, if, if this happens again, and I do need help, would they???? Sorry again for the really really long post. As ever your support to me has been amazing, to go back to the start, I know I’m not on my own.

chiarieds

Hi @jinnty - I can't begin to imagine a Dr asking if you wanted to live, & I too would have incredible problems running this through my mind.

I think you know the answer, that you matter, & that life is, after all, so very precious. I wonder if it would be helpful to discuss this with your GP; you shouldn't have these fears, & hopefully talking it through may help.

Please don't ever apologise for the length of your posts; it really wasn't that long. Take care, look after yourself the best you can, remember we're all here for you, & try & have that chat with your GP.

Ross_Alumni

Hi @Jinty

Thanks for your reply and for speaking so honestly about what you have been through, it certainly seems as though a lot has gone on for you previously.

Regarding this part of your post:
"I’m still trying to digest, the dr asking me if I wanted to live, considering all my problems, whether it’s worth intervening and maybe I should just give in"

It surprises me that a doctor would say something like that to you, did they have any basis for asking that question?

I just wanted to let you know that while you may have doubts about yourself based on what he said, you are absolutely not a waste of space and you are just as valuable and entitled to help and support as every other person.

Sometimes it can be easy to let what others say play on our minds, and it can be easy to let what they say impact us long after the fact, but it's important to remember the value you have and that those are just the words of one person.

how are you managing at the moment with your condition? If you do ever feel as though you need further support, I would encourage you to speak with your health professionals and talk about what you are struggling with. I'm not sure if you are still with the same GP, but if you felt as though you wanted to see a different one you could be referred to another.

Sandy_123

Hi @Jinty I 2nd what Ross has said. I also know what your going through to certain extent. You are definitely not alone and entitled as the next person to care and finance. Defiantly not a burden. Like me and most of us it's learning how to live our best with the disabilities we have, including going up against drs and fighting our way through. I could do with a new body too lol prefably a size 10 athletic 🤔.