Midnight Battles

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This topic contains 8 replies, has 5 voices, and was last updated by  Lorna5 1 week, 4 days ago.

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  • #46225

    Mooviola
    Participant

    Reading some of the posts here it is oddly comforting to realise that despite being the early hours I am not alone, even though I feel isolated and frankly at the end of my tether with the onslaught of pain. Having been diagnosed with syringomyelia several years ago, and having stacks of meds and various goes at CBT and mindfulness, it does nothing to touch those ghastly days and nights of hàving to endure the unendurable.

    The latest flare up is a new area of pain that makes me feel like I have broken my shoulder and àrm. There is no point calling a doctor to be told I have had the limit of painkillers allowed. Been there, done that etc. Neuro pain is a tougher I know. I know. But it’s so hard to stay calm and do the breathing when the pain is so excruciating that it feels like your eyeballs will explode and having had hours of unremitting agony there is no likelihood of let up.

    I know that nothing can be done. The doctor is bored with me. I can’t find a support group for this particular illness. I have tried the only one online a few times but without success. I’m sick of being brave. Sick of myself really. I’m finally at the point where I have to give up my beloved job, which I can’t afford, have put my house on the market, which I don’t want to do but have to to reduce my outgoings, and have to face up to the fact that it just is what it is.

    But I still need to get through the next five minutes. I’m not depressed. I am just exhausted with continual pain. I wish you could get gas and air at Tesco. I had that a couple of years ago when my husband called an ambulance in the end because I was so overwhelmed by pain for one long night session. It didn’t stop it but it did encourage the pain to move over to the other side of the room for a while so I could breathe.

    Forgive my pity party. This is the first UK space I have seen and I needed a cyber shoulder to cry on for a bit. Appreciate it. Thoughts go out to all of you in the same position in the wee small hours.

    #46227

    lc
    Participant

    Hi Mooviola, sorry to hear your plight I get like that myself from time to time, I do have nerve pain constantly along with arthritis and sij problems and chronic persistant pain after a fractured /dislocated pelvis and 2 spinal ops in one year. although my pain is variable from day to day, so I know how you feel I don’t have what you have, but pain is pain and we all cope differently. have you tried a Tens machine It doesn’t take my pain away but it helps distract my mind from it a bit, Mindfulness is a way of life and need to practice it every day at first until you can just zone out when ever you want. the CBT based one helps me to cope with it but it does take a lot of practice ,Ive been doing it for about 18 months -2 year now and do it every day when getting a bit stressed ect. or even when I’m Ok. it is hard at first to try and focus on other things while in excruciating pain but over time it can be done, through mindfulness just takes persistence with it like your pain is persistent . I know its hard on those ghastly nights but when your like that I try and focus my mind on other things even if it’s doing my family tree or colouring a book or something like that. I’m not being patronizing. but these things help me get through it all. just giving you other ideas to focus your mind on something else that is not to hard to do. main thing is to find something you can do while like this, to keep your mind focused away from what your going through. may be try going back to a pain clinic and explain to to them that you wish you could have gas and air at home they might be able to help. worth a try anyway.Hope you start to feel a bit better soon ,Take Care and Best wishes, Lee

    #46229

    Mooviola
    Participant

    Thank you so much. You are sensible and courageous.

    I have had a TENS for years but it doesn’t work for this. I do need to persist with mindfulness it’s true. I will.

    I have been battling to keep working but have finally decided that I need to follow advice and take early retirement because I work long hours. I just can’t do it any more.

    Thankfully I read endlessly. Once I can get my head back into a sensible space I can refocus on that to escape into that which I managed to do in the end this morning. Who needs sleep? Haha.

    I appreciate your kindness and wish you well.

    T

    #46231

    lc
    Participant

    Hi Mooviola, I can empathize with you ,as I had to give up work, as I could no longer carry on the way I was, It is very hard at first worrying about money ect. but with the right help you can adjust and over time it becomes your normal. the disability resource centre helped me fill out forms ect. and an OT (occupational therapist) help with adjusting my home so I can be a bit more indipendant. It is a horrible thought . But now the only thing I miss about work is the banter not the work , yes you lose touch with people but you soon find out who your true friends are. It was a case of carrying on till I totally mess myself up or think about my long term wellbeing where I can still have some quality of life. my health, sanity and well being came first. as employers dont really care as long as work is being done correctly and you are soon replaced and their life moves on. Time to sit down have a rest and concentrate on getting a relatively happy life.also get your health in better order with help so you can cope a bit better with what your living with , it’s the small things that make you happy and doing little things that you can do and you enjoy doing, that really matters. It is a case of finding what methods and medication that works for you best, as what works for one doesn’t always work for you. Best wishes with whatever you decide and keep in touch with this site to let us all know how your getting on, wether its a rant or whatever is troubling you. take care and best wishes on concentrating on getting yourself in a better place within yourself.Lee

    #46233

    PaulT_99
    Participant

    Given your Severe levels of Chronic Pain, i would say you would be a ideal candidate for “Spinal Cord Stimulation” surgery.

    Its generally considered the “end of the line” treatment, given its massive cost.
    Ive just had it done and my daily pain is down from a 8 to 9/10, to a 2/10 worst case.
    Its truely life changing.

    There a big thread on SCS a few posts down from this.

    #46234

    Helen H
    Participant

    Hi Mooviola

    I have nerve pain too, and pity parties are part of what needs doing when you are in horrible pain! So sorry you’re having such a crap time. Night time is the worst when it feels as if everyone else is peacefully sleeping…. and minutes can feel like hours.

    Giving up work is a biggie, and so many unknowns. Take it from me, you are doing heroically under really tough circumstances- the stress of selling your house and retiring is enough to flare-up pain to worse levels. I gave up work 5 years ago, and my husband can’t work either- it was such a massive loss. Now, I am so glad that years of trying to work whilst too ill or pain to do so are behind me, and the quality of my life has gone up significantly.

    You will feel stronger again, and although giving up work causes grief at the time, it will help in the long run ‘cos you will get some of your life back!

    BTW: I love the idea of Gas and Air at Tesco’s. I have just done an online shop…wonder if it’s too late to get them to bring both…hmmmm lol.

    Take care
    Helen

    #46238

    Mooviola
    Participant

    Thank you, Helen!

    So wonderful to have such a kind and empathetic response. It is such a drag. I bore myself really. I try to retain a smidgen of a sense of humour despite wanting to just throw myself under a bus at times. It’d have to be a passing tractor where I live though…or a couple of sheep. Woulndt work.

    Horrid weekend really. However, the thoughtful responses on here from yourself and others are so considerate it really helps.

    I will keep going and find a way to sort out pacing myself especially once I have left work. I really love my job and see it as part of my identity but know that I have to find a new path.

    Thank you for your thoughts.
    Theresa

    #46239

    Mooviola
    Participant

    Thank you Lee and Steven.

    There are things on this forum I have never heard of that I will have to explore so thanks for the ideas. I have been trialling ketamine infusions which had some impact on one localised area of facial pain but not on my limbs but the last round did nada.

    A car went into the back of me couple of months ago and although it was a minor bump, I have got whiplash too that the doctor says will take 6 months to heal. I guess that just compounds everything really and triggers everything.

    I feel mentally stronger today having had your support.

    Huge thanks!

    #46244

    Lorna5
    Participant

    Hi Mooviola
    This forum is truly a great place for support and just to vent we all understand pain which is so good. I find it impossible to explain to non pain sufferers they look at you and can see nothing no broken arm or leg but the pain can be too much for all of us at times so we take our meds use our tens meditate and vent on here and then lovely people reply and you know you are not alone so vent away
    Lorna

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