Rough day

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Been a bad day today for pain.

I think the wheelchair use is jarring my spine like my motorcycles used to over the bumps. I use two air cushions and a lumbar lump as I call it to try and be comfortable but not sure it’s working.

I actually said out loud whilst I was preparing dinner ‘I’m in so much pain I wish I was dead.’

I honestly can’t see me being around in a year or two as things are not going to get any better and I’ll have this pain till I die.

Really down today.

Comments

  • Woofy
    Woofy Member Posts: 312
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    Keef. I am really sorry you’ve had a horrible day today. I thought mine had been awful.

    I can’t begin to understand what it is like to be in a wheelchair. I went to grab something out of a cupboard today.

    ended up with a glass jar full of pasta everywhere, and cuts to my hand.

    This arthritis stinks.

    I really hope tomorrow brings a better day for you. Not much help I know, but just wanted to show some support.

  • CrazyrunningDog
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    Hi Keef sorry to hear you're so down. I really understand how you feel. This has been a bad week. Just been woken up by the pain in my shoulder and hip. The naproxen obviously isn't working and I am supposed to go to work in the morning. I can hardly stand up. This is one horrible illness. I have felt like I wanted to die on numerous occasions this week. Sum how and I don't know why but This time at the moment I strangely feel OK about. It hurts like crazy at the moment but mentally I feel fine??? Earlier in the week I was totally depressed and was wishing I was dead. I was even hoping that my beautiful 12 year old dog would get ill and die so that I could finish myself off.

    So why do I feel fine about it now? The pains the same in fact it's worse.

    Something weird has happened at this moment I actually feel completely fine about it almost happy?

    I'm not fighting it I don't feel sad about it. What it feels like and I might be completely different in 20 minutes is I kind of accept it. It's sort of happening in my body but my brain and my emotions are some how not engaging with it. I feel fine about it. I have no idea why. I have not don't any thing to make this happen No breathing techniques etc Just got up and made a cup of tea and opened the lap top.

    I spoke to my sister who also has an auto immune disease but instead of attack your joints it attacks you veins and arteries and she has had it since she was 19. Most people who get it are dead within 7 years. She is now 58. she has brought up 3 children and work full time. She has been hospitalised on numerous occasions all her breast tissue died because of a lack of blood getting to the area and had to have reconstructive surgery. She is full of stents and has a Tens machine embedded in her. She was very athletic ran for the county was better at all physical activities than me.

    She told me that she had wished to die on numerous occasions so don't feel bad about that but she also said that I some how had to let go of the old Martyn and learn who the new me is. Accept what has happened and to stop looking to the old version of myself. Do you know what I think I sort of have and it is that shift that is making what is a really horrible and painful time now feel OK.

    I am somebody else now. She also told me that somehow you learn to live with the pain. She is in pain every day.Just like me. But it doesn't get her down all the time.

    I don't know if any of this make sense all I am doing is a quick telling of my week and hope it might help a bit

    This might all change in an hour and I'll be back to feeling really depressed and crying again.

    But just to let you know I have managed some how to have found a moments peace in the eye of the storm and I hope you do as well.

    Martyn

  • Baloo
    Baloo Member Posts: 428
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    How are you feeling today @Keef . I noticed I got real down when standing up on the tram, it was giving me a near continuous flare up from painful legs for week after week, and even when I solved it by (wait for it) sitting down in a seat, I noticed the shut down mood didn't go away, it needed those little other things I can deliberately do to feel better about.

  • Skinny Keef
    Skinny Keef Member Posts: 1,138
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    Hi Baloo, still down but not quite as desperate thank you for asking. I think my post wottied the moderator as all my posts are now being vetted, probably cause this reply to be delayed. Also I’m typing without my glasses as apparently they’re gone to the planet of lost things.

    i think the effectiveness of the tramadol has decreased and i will see my doctor this week. I guess I’m going to be back on the patches again.

  • Skinny Keef
    Skinny Keef Member Posts: 1,138
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    Found my glasses now…….

    As I’ve mentioned before the tram really helps with my depression and IBS, as well as helping with the pain.

    As with all opiates the body becomes accustomed after a while. I think this is what has happened and my pain has gone up and my mood has gone down but because I was really really low, I was not capable of rational thought.

    Having had a few days I’ve now realised possibly what’s going on.

    Thanks for all that posted on this thread. Thank you so much.

  • Lilymary
    Lilymary Member Posts: 1,742
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    Hi Keef, just wanted to say I hope you're feeling a bit better. I'm sorry to hear things have got you down so badly. Sometimes not knowing why adds to the effect, so I hope you can review this with your GP soon. You're right, some meds can have reduced effectiveness if you've been on them for a long time. Have you considered asking to be referred to a pain clinic? I know they've been really helpful to some long term sufferers on this site. xx

  • movingslowly
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    @Keef

    how's it going?

    Sometimes it's just 'pants' innit?

    For me it's the nerve pain that can have me feeling tortured and pretty desperate. On a real low.

    Some days there's more inflammation in certain areas and as a result some of my nerves get pinched. Can feel like a form of torture.

    I like LilyMary's suggestion above about asking to be referred to the pain clinic. Maybe the consultant could review what's going on for you and alter, adapt, tweak any current treatments? Maybe give you some hope?

    I recently came away from a pain management consult and treatment with more drugs, steroids and renewed hope. I think sometimes that 'hope' can be spirit lifting and one of the best weapons in our daily battles.

    Anyway,

    I hope things are going better for you :)

  • Gemgems
    Gemgems Member Posts: 7
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    How are you feeling today?

  • Skinny Keef
    Skinny Keef Member Posts: 1,138
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    Hi Gemgems, I don’t feel suicidal now, but I’m still in more pain than normal. I’m going to get a drug review at the docs but it’s impossible to get through on a Monday morning so will ring tomorrow.

    Thank you for asking.

    Being able to chat on here actually makes a HUGE difference.

  • airwave
    airwave Member Posts: 579
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    Just a suggestion, if your back is in a state what about some gentle massage, or some type of heat pad, most masseurs will do a ‘sports massage’ or perhaps something a bit gentler? Often pain is caused by the muscles locking up to stop any more injury, it may help relieve suffering?

    Please don’t wish your life away, we would all be the poorer because of it!

    it’s a grin, honest!

  • Skinny Keef
    Skinny Keef Member Posts: 1,138
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    I see my osteo every week for acupuncture and massage but she won’t touch my lower back because of fear of causing more damage after reading my mri scan results.

    one of the doctors at my surgery (never get to see the same one twice in a row) told me after reading them not to even look at a motorcycle let alone ride one and only to venture out in a car if it was absolutely necessary due to the risk of spinal cord injury. She also said don’t do anything with a risk of falling or any exercise with any impact. This is for a guy who used to surf everyday when I lived in Spain and skateboarded and snowboarded not to mention all the other crazy stuff i used to do. Now I am in agony if I slightly miss my footing and I mean slightly.

    I threw caution to the wind and rented a cheap van and took my wife and our young son away for a trip for their birthdays earlier this month. She has a mini cooper and I can’t travel in that as it’s too painful. The van was slightly better and I took my wheelchair.

    crikey, where did all that come from? Just trying to paint a picture I suppose. I’m wrapped up in a quilt in bed listening to the radio today as I’m in too much pain to do anything else. I played a bit of guitar earlier but the amount of pain just takes all the pleasure out of it. This disease has robbed me of everything I love in my life, especially my music which is the last thing to go I think.

    I always have a lay down around midday because it takes the pressure off my back for about hapf an hour. I don’t always fall asleep and I don’t lay down coz I’m tired (something normal people don’t understand) but today it’s been a bit more than the normal 30 minutes lol