Living with pain and hallucinations

Why living with pain and hallucinations feels like torture

Living with pain and psychosis. Transverse Myelitis is an invisible disorder but that doesn't stop it from hurting all the same
Transverse Myelitis is an invisible disorder, and I’m always in pain.

I can’t sleep I’m exhausted, and living with this pain, sleeplessness and hallucinations feels like torture. It makes me wish I wasn’t here. But in reality, if someone took away the pain and the spiteful voices, of course, I wouldn’t want to be dead.

I honestly don’t want to be dead! I just want to share my experience of living with both physical and mental illness, together with suicidal thoughts.

While I’ve been physically unwell and unable to sleep this past week, all I’ve been able to do is think. Unfortunately, it hasn’t been all positive thoughts either. See, when I’m in pain and exhausted, I feel angry and it’s difficult to think lovely whoopy doo positive thoughts.

Yes, you heard that from me. I don’t always have the energy, motivation or wherewithal to use my CBT toolbox to self-therapise. And while I’ve been painstakingly practising my breathing, mindfulness, and self-hypnosis, the pain and sleeplessness deny me any normality.

I can’t think normally so I don’t know where the negative thoughts stop and the auditory hallucinations begin, and vice versa.

I’m unable to read anything vaguely mental-health, trauma, psychologically or emotionally-related when all this is going on. Doing so distorts my mind even further and makes me wonder whether I’m going mad. It’s as though if I read anything related, maybe I’ll catch that too — like you can catch a cold?

No, it doesn’t make much sense to me either.

Night terrors

Night terrors and psychosis
Night terrors — Image from Astrotalk

As with most things, it always seems a little easier during daylight hours. But then all I’m able to do is overthink, trying to process what’s been happening, or did it even happen?

I knew when I landed with a thump on the floor of my bedroom in the early hours this morning that I must have dozed off at some point. See, when I do sleep, I get these awful night terrors where I’m being harmed in strange ways. I’m trying to scream but can’t because I’m cotton-mouthed.

I know I lash out in my sleep because of the many broken water glasses by the side of the bed or the sofa. When I’m in the nightmare, it’s like being locked in in my head and not being able to get out. It feels like a horror movie on fast forward, rewind, fast forward…….

When I’m woken I’m told I’ve been screaming and crying and kicking out. Then I’m exhausted but can’t get back to sleep because I’m afraid I’ll return to that place, that trauma!

Restless leg syndrome

Restless leg syndrome can cause sleeplessness and depression
Chronic restless leg syndrome can cause sleeplessness and depression

On top of the TM I also experience restless leg syndrome (RLS). I used to get this occasionally but now, perhaps because of the TM, it’s a regular occurrence. The main symptom of RLS is an overwhelming urge to move your legs and

  • it can also cause an unpleasant crawling or creeping sensation in the feet, calves and thighs.
  • the sensation is often worse in the evening or at night. Occasionally, the arms are affected, too.
  • RLS is also associated with involuntary jerking of the legs and arms, known as periodic limb movements in sleep (PLMS).
  • Some people have symptoms of restless legs syndrome occasionally, while others have them every day — me!
  • the symptoms can vary from mild to severe. In severe cases, restless legs syndrome can be very distressing and disrupt a person’s daily activities.
  • in the majority of cases, there’s no obvious cause of restless legs syndrome. This is known as idiopathic or primary restless legs syndrome.

Restless body and unspent climax

Restless legs and body feels like fireworks going off inside me
Restless body feels like fireworks going off inside me

What happens with RLS is that the tingly sensation starts slowly, creeping and crawling up through your legs and feet. It builds and builds until it erupts in a burst of firey tingling. Which lasts for about 10 seconds. Then it stops, suddenly! Give it 20-30 seconds, and here it comes again, building and erupting, and the massive firey tingle!

Think how fireworks hiss and fizz, then explode and bangggg! And imagine that inside your legs and feet.

Sadly, I get whole restless body too and unlike the RLS, it doesn’t crawl slowly, erupt and bang. It crawls, tingles, and tingles and it just stays there tingling and tingling, and it’s excruciating! I can only liken it to being ready to climax! And staying right there! On the verge! But, there is no end! It’s damn unbearable? And it’s not pleasant! Aaarrgghhh!

Sorry about the graphic explanation. I did think about explaining how a sneeze builds and builds then erupts, then you get respite — until the next one. But that doesn’t even touch the sides! Let’s go back to the fireworks hissing and fizzing, and continuing to fizz … and fizz ….. And imagine that inside your whole body, for hours on end.

Trust me, I’ve tried all the tips and tricks to alleviate my restless body, even the bar of soap under my sheet. I’ve tried cannabis oil but can’t seem to get the dose right. Too little and it doesn’t work, too much and I get the paranoia — which, on top of everything else, I need like a hole in the head.

Strained relationships

Living with pain and psychosis strains relationships
Living with pain and psychosis strains relationships — Image from Pxfuel

The TM pain, exhaustion, sleeplessness, nasty negative voices, the night terrors and symptoms of RLS have most definitely strained my relationship with hubby (who’s not around this week to wake me from the night terrors).

There’s no way for anyone to understand how or why someone just can’t relax in bed, with or without a partner. How can anyone understand why a person has to keep pacing, moving, fidgeting, punching their legs and arms. For me, the worst is when it reaches my neck and face too. Imagine peeps — this is all night, or until I finally doze — only to be woken by more of the intense physical tingling.

The following day is absolute hell; being fatigued and unable even to shower and dress on my own in the mornings. Brushing my teeth and scraping my hair back is often as far as it gets with my daily self-care. How attractive is that 😉 Let alone trying to do five minutes of tidying up or cooking a meal without almost passing out.

Heck, I wouldn’t want to put up with someone like me in a relationship. I admit — I don’t have the patience. For mental health yes, because I understand it. But a partner being in constant pain, unable to do things for themselves…….. hmmm?

Over to you

Clipart

Well, that’s a week in my life. What’s your average week like? In what ways do you suffer or experience pain? Can you tell us about it? I look forward to any comments, any tips and I’m happy to answer questions.

Author: mentalhealth360.uk

Mum to two amazing sons. Following recovery from a lengthy psychotic episode, depression, anxiety and anorexia, I decided to train as a Mental Health Nurse and worked successfully in various settings before becoming a Ward Manager. I am a Mental Health First Aid Instructor and a Mental Health Awareness Trainer, Mental Health First Aid Youth and Mental Health Armed Forces Instructor. Just started my mental health from the other side blog.

62 thoughts on “Living with pain and hallucinations”

  1. Do you take medication for restless leg? I did for years na dit worked great. I also had to cut back on my Wellbutrin because that’s one the side effects and it really helped to alleviate the problem. What do you take for pain? You have to get more relief than over the counter products, they just can’t do enough. CBD doesn’t help everyone and doesn’t help with the worst pain or so I’ve found. I take Tramadol for pain, it’s not the best but the lesser of the other pain meds I’ve taken. I still have pain but it’s manageable. Do you have access to a topical RX called Painsaide? Spelling might be off. It’s awesome! It provides me almost instant on the spot relief. I don’t have all over pain quite like your’s so maybe it wouldn’t work but maybe there is another topical RX that would. My pain doctor prescribed it. Pain makes my Bipolar Disorder and stress so much worse. I can only imagine how much worst having hallucinations must make it. They are the worst for me anyway. Take care.

    1. I’m already on the highest dose of Gabapentin for the TM and was previously on Pregabalin but they don’t work for the restless leg/body. I’m on Tramadol for pain too. And like you, while it doesn’t take away the pain 100%, it’s almost bearable lol. I haven’t heard of Painsaide and it doesn’t come up in google so I can’t compare it to anything here. But I really appreciate you taking the time to let me know. It’s awful having all these symptoms isn’t it? And thank you for sharing how pain makes your Bipolar Disorder worse. I feel for everyone in the same situation and sorry if I come across as just whingeing.

      You take care of yourself too 🙂 x

      1. I found Voltarol patches which heat up and the meds are supposed to ease the pain. I think the heat helped slightly but nothing else. I also tried some other sprays but nothing so far 🙁 Hoping the RLS will just stop one day! 🙂

  2. I wish there was an “I need a vacation from life” pill that would knock you out for a week and give mind and body a chance to recuperate before having to face the world again.

    Hugs. ❤️

    1. Hi P, no, they’re not really and I did used (excuse my grammar) to get RLS before but only very now and again. There isn’t just one med for TM, there’s about 10-11, 4 times a day – so yes, I often rattle when I move 😉

      One med for TM that I already use, ought to work if people with RLS but it doesn’t for me 🙁 Aarrgghhh! I hate moaning P, particularly on here. It just all gets me down sometimes. I honestly think this damn Covid is affecting me more than I thought it would. It’s not so much me as my life hasn’t changed too much, but the people around me and carers etc. Perhaps it’s having a knock on effect on me.

      Anyway, enough!! I hope you and yours are all well and coping P 🙂

      1. We are good, thanks, yes, that was pretty much what I thought. I am picking up a kind-of “oh no, not again” attitude. Even my wife was at it – fancied going out for a coffee at the weekend but it is not warm or dry enough to sit outside, even if we could get a takeout somewhere.

  3. Oh no!! I wish you felt better!! I have restless leg syndrome too!! I think it’s caused by my Seroquel, and it kicks in while I’m falling asleep at night. Sometimes Mr. Kitty climbs onto my legs, and God bless him, when the RLS starts, he goes flying across the room!! I can’t protect him from my restless legs!!

    If you want to talk or have someone to listen, please email me!! I wish you were happier!! You’re being quite hard on yourself, because everyone has health problems, and it doesn’t make them a burden to live with, not at all!! It’s okay!! I’m sure you’re a great wife to your husband!!

    1. Thank you Meg. Ouch, so you know what it feels like and how bloody awful it is! Lol you made me laugh about your cat 😉 I really appreciate your kind offer of someone to talk to and I’ll keep it in mind. That’s probably better than posting it all over my blog lol too. I know everyone’s got their own stuff going on, particularly with this damn pandemic and lockdowns all over the place. And I know too that this, for me, will pass 🙂 x

      You take care and big hugs xxx

  4. Hey Caz,
    Hope you feel better soon.. That’s a lot to deal with. Have you tried magnisium spray for the RLS? It’s helped some clients immensely! Sending love and prayers..❤️❤️❤️🙏

      1. Hi Caz,
        I sure hope it’s helpful. This one client swears by it and I just sent you some additional info. You are most welcome. Like you said, something’s gotta work. Fingers crossed 🤞! I’m well, thanks Caz.

      1. Ha! I ordered them too while I was at it and get them tomorrow – good old Amazon. I know people hate them but for someone like me who can’t get out much, it’s a godsend! Thank you and I’ll keep you posted.

      2. Hey whatever works and I love how proactive you are. Just make sure I if it doesn’t work you look into others as sometimes some brands work while others don’t.

  5. Sending you much love and hugs. I’m sorry you’re going through such a rough time right now. You describe it so perfectly though as I suffer with restless leg sometimes and with depression a majority of the time. Please hang in there and know that you ARE worthy of love and support <3

  6. Gentle hugs to you. I know I don’t perform well on sleep alone and when stress increases because of every day life currently, then I am also finding myself intolerant.
    God knows what I would be like with intense pain and restless leg syndrome. But I kniw I wouldn’t be good.

    I hope you get sleep where you can Caz and if you are like me, sometimes lacking kindness with one self, I hope you find a way to give kindness back to yourself. Xx

    1. Yes, I think everyone’s feeling it in some way Liz and as I’ve said to a few others, I didn’t expect that things would change for me, but I think it’s changed a lot for those around me 🙁 Carers/visitors are few and far between so I for one, can’t wait for some normality in the world.
      Thanks again my lovely xx

  7. RLS is something I can relate to. I haven’t been officially diagnosed however. This all sounds just horrid. I would not want to have to deal with this personally 🙁

  8. I hope you are able to get some relief from these signs and symptoms. There are medication for restless leg syndrome. Maybe, if possible, you can get a sleep study and EEG to get some answers. I am sorry that you are going through so much and hope things get better.

    1. Thank you for taking the time to send your support, Yes, I will be looking into all this once the pandemic is over 🙁 I don’t like to bother the pain team etc at this time. My son says they’re all struggling at the moment. But I know now because I’ve had this every evening for many many months, I need to get something done . Thank you again 🙂

  9. My pain these days is mostly emotional. My week is suffering through a job that makes me want to bang my head against the wall. It has always been a lot of work, but it used to be rewarding before COVID changed everything. And now it looks like everything is going to change again, which will make it a logistical nightmare. I’ll have to work even harder and it will be just as unrewarding. On the weekends I sit and do nothing, because most of the fun things I used to do I can’t do anymore with COVID, and a lot of the political unrest has revealed some of my friends’ true colors and made me reconsider if I really want to be friends with these people. Everything that made life bearable before is gone, and everything difficult and tedious about life is amplified.

    1. I’m really sorry to hear that about your job Greg. And I can appreciate the many changes due to Covid. I see it in the people around me and though I didn’t think it would affect me, I think it’s starting to. I wish I could say it’s easier because most people really are in the same boat, but life doesn’t work that way 🙁 x

      1. I wish someone did. On top of everything else going on, in the spring I started having some mild discomfort breathing that never went away, occasionally leading to coughing and excessive throat clearing. It’s not COVID, I’ve tested negative twice, and all of the possible allergy tests that my doctor could run came back negative, as did a chest x-ray. The doctor now wants to treat it as asthma and put me on ciclesonide, but as far as I can determine, ciclesonide can weaken the immune system, and that’s the last thing I want during a pandemic. I would be okay with just accepting the fact that I’m going to have mild discomfort breathing for a couple years until the pandemic is over, but according to CDC guidelines I’m not allowed to go to work with a cough even if I test negative for COVID, so I might be stuck without a job now.

  10. I had RLS for years and could never pinpoint the cause. It really disrupted my sleep. Then I discovered I had muscle knots (trigger points) in many places in my gluteus muscles, lower back, ribs and with self-massage it’s mostly gone.
    For me, now, if I get another phase of it I search out muscle knots everywhere I can as I know I’ll always find the one that’s triggering it off. triggerpoints.net has really helped me. X

    1. Ah that sounds interesting. Because of the TM pains I tend to have a lot of muscle spasms and many knots. However, it all seems to be in my back so I can’t reach. It’s difficult for me to have a massage too because someone (even me) touching my skins feels like it’s badly bruised so it hurts. With TM, something as light as a breeeze, a single hair or the proverbial feather touching my skin can feel agonising. But, I’ll keep your words in mind and will try a few areas that I can reach. Thank you again 🙂

    1. Yay! someone who hates it as much as me lol. I have to be helped to get pillows and cushions everywhere so I can be put on my tummy – once semi-comfortable (as good as it gets) I kick out my feet, as though I’m swimming front crawl until I finally fall asleep for an hour or so. Then it all starts again when the RLS wakes me lol x

  11. I hope your week has improved.

    Restless legs are awful and I can fully relate there, I sometimes find putting my feet in warm water helps or using a foot spa helps, not always though.

    I can relate to the Suicidal thoughts too.

    Sending you virtual hugs x x

  12. Caz, your heartfelt experience and struggle reminds me of what Violeta Parra (the great Chilean musician) once wrote, played and sung: “Don’t cry when the sun is gone, because the tears won’t let you see the stars.”

    Wishing you peace of mind, body and soul in the weeks ahead. The stars are always there 😊

    1. Aaawww, bless you Sean. This have got better in the last few days or so. I wasn’t well physically and remained lying down so I wasn’t able to type/blog for around 10 days and I stayed off social media. I think the break did me some good.

      You just made me look out of my window there – to look at the stars. Thank you my lovely x

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