Lots of lovely people have supported me recently and in the past. I am grateful. But when it comes down to it I wake in pain and that is my life. There is a glorious 2 minutes in the middle of the night when I get up to the loo and there is no pain. It reminds me. Movement is more free. I am lifted with joy.
Now as every day the pils that hardly work await me and the dread of trying to cope with another day. Seriously is there a point to this ? Will I become a better person or just more scared and irritable ? Its never going to improve only get worse and I can't take what's happening now..
When I first joined here my pain was only severe at times and I got breaks from it. Quite a lot if I was sensible. But now its just a question of trying to get by till the relief of night. I don't feel pain whilst asleep. A glorious state.
Yes I'm moaning and self pitying and I make no apologies.
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deejames
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And no one is here to judge you Dee if you want to moan.
Have you asked for counseling?
If you can get on a group therapy course, we run them back to back here, it can and does help. No it can't make the pain go away. No it can't change what you have but....surprisingly David has enjoyed them.
He did 8 weeks back in May but had to miss a few so they asked him back again. Last one next week.
He comes home each week with little snippets though rarely shares with me what the group has done.
This may make you smile - it did me. My flight from Edinburgh clashes with his meeting next week. He asked me seriously if someone could take me so he could still go to group. We comprimised and he is dropping me off early. That tells me how much he gets out of the group and buggar the wife!!!
I don't know what else to say but loves yo loads and get that surgeon sorted in Glasgow. I want cake with you.
Somehow, you have to find a way of making the best of what you have already. Not easy I know only too well. But over time telling yourself good things about the day. Yes there are good things out there. How you are going to manage the day. Ways of enjoying yourself ( this can be difficult at first) I treat myself to Spider but limit it to 3 times on lap top. Allowed more on iPad.
Also a friend has recommended mindfulness to me. I got the book off eBay which includes the cd . Not read or listened to it yet but feel sure it will help me as I get worse pain wise etc. am already worse after 17 years of chronic pain.
And my patience is not a patch on what it once was! I wish you a new way of thinking. I still have a long way to go with it. I Must start reading that book.
pull back from giving yourself extra pressure if you can. Anxiety does make pain worse.im struggling with it at mo.
Gentle hug
Hi dee a few months ago I felt like u do also my ex girlfriend use to hit me hide my meds till I passed out my pain now is 24/7 my meds have stopped working so I'm waiting to see pain specialist to try and find new meds I think what I'm trying to say is u not alone, because of pat and others on this site if it was not for them helping me I would have taken my own life, so please moan as much as u like and we will be here for u
"There is a glorious 2 minutes in the middle of the night when I get up to the loo and there is no pain. It reminds me. Movement is more free. I am lifted with joy."
Surely there must be a clue there? Whats going on at that time that makes the difference?
This is a good point coz when I get up in the night the same pain is there but I guess I feel the urge and act on it without thinking or dreading the pain. Perhaps this is indeed a clue/the same for you Dee? Big hugs ❤️
"The only way to find new things is to let yourself be lost first",
"Change how I measure success" I have a few more but you get the idea. Wish I could say these are my words, but they came from my therapist (of course I'm sure he's not the author :]). I write these on cards and place them on my vanity mirror so that I may see them and try to remember and use them when I get knocked down (which happens daily) - we all live frustrating, sad, mad lives at times.
My therapist says "it's ok to be broken" and of course I say "Not To Me." His response would be something like "allow yourself to hit rock bottom and when you crash allow yourself to be there - no guilt, but ask yourself why and when. Realize this is your life and try to release the pain, anger and bitterness of it all and try to accept This Is A Part Of You. A new YOU, that will never be like before :[ - so become someone new. Allow yourself to see through it all, realizing you are Strong - you fight a battle daily, you are a Warrior".
It's hard as I too live with chronic pain and see no light at the end of the tunnel (I still have two surgeries to go). I have to realize my limits and set new ones. Try not to set myself up for failure, daily. And it's OK to moan, have self pitying and B**ch when I have to.
The worst of it all is that I feel I have no control over this mess - but he says I do. It's hard to see, but think/find them and write down what you can control (even a little). You will realize you have more than you thought ... holy crap I sound like a therapist :] (I'm so not - I'm a mess trying to get free)
Hang in there, I know these are just words, but I truly wish you the best.
Hi Dee, I really feel for everyone on this site suffering pain, it's not nice, we are sometimes looked at as though it's all in our heads, I would challenge anyone who says that to experience what we go through. I feel that by your posts you have more pain issues than I have got, mine get me down so can only imagine what you are feeling. How is the sickness have you been able to sort it out?
All I can say to you is keep posting on here a problem shared is a problem halved or so they say, I would rather hear you offload on here than know you are letting it build up by yourself. Have you started your pain management course yet, if so how is it going.
Try to keep your chin up who knows a cure for chronic pain may just be around the corner.
You say: "There is a glorious 2 minutes in the middle of the night when I get up to the loo and there is no pain. It reminds me. Movement is more free. I am lifted with joy."
This wonderful what is it you are doing that creates this situation? This is needs more investigation. If you are doing something perfectly right and are able to do this then there is possibilities of applying this rightness to other activities.
Are you able to investigate this further? I have an idea what might be happening. But need some further information.
Its less than 2 minutes and its because my body (spine) has been unmoving and non weight bearing. No movement means no grinding of worn down facet and sacrioilic joints. Inflammation dies down, pain level reduced. Its only about that time in the morning. Later on in my sleep time inactivity gives stiffness and a different pain.
Not sure if my description is correct but the reasons are visible in my scans and xrays. There is no disc disc space to protect the vertebrae at several points. A jagged mess where the vertebrae rub.
You missed no muscular activity to pull the joints together. Muscles can be at the right tightness or over tight. If there is inflammation then there is less room for muscles to contract.
When we go to sleep the brain switches off the inputs to muscles. Muscles contract when electrical pulses are sent to them. There is a need to move at various points when we sleep to ensure that bed sores do not develop. So the brain can switch on inputs to muscles and then turn them off again.
The weight on joints is very small. Muscle pressure on joints can be very large. I suspect that the muscles are not contracting so heavily on the spine because they are partially switched off. You need to check this on yourself to determine if I have been making a right or wrong guess.
It is possible to have very little muscle activity and move reasonably well. Alexander Teachers work on this issue. Alexander technique is often about not doing rather than doing.
Does what I say match your experience or am I lacking in understanding here. It could be that you have not looked for this effect in your two minutes of bliss. If I am partially right then it is possible to apply the technique of reduced muscular activity in the spine to other activities. Spine does not need much muscular activity to balance against gravity. By the posture being not paid attention to a lot of muscular activity can be created to try and correct the posture problem.
I managed for years John with paying attention to posture and spinal alignment. Yoga and then Pilates kept my condition at bay but eventually it became too much even for disciples like yoga and Pilate's.
I do acknowledge and agree with your posts about Alexander technique etc but its gone too far for me I believe
Thanks for reply. I know what you mean by too much. I find as I get older things get more difficult. Yoga and pilates as you say have found are helpful. The difficult bit is the resetting of the proprioceptors. This is where I need McTimony Chiropractic and Alexander Technique to reset.
The proprioceptors cannot be controlled at the thinking brain level. Their influence is at the spine level which has a tendency to bypass the thinking brain. Someone who can help lengthen out muscle can reset the propioceptors. You cannot do it yourself.
Hi Dee, I'm probably with John on this one... Like you, On MRI my discs and joints are like something out of the British museum and I couldn't function without the Meloxicam but in the middle of the night when I get up I still groan under the weight of the pain. However, You have a window it seems before consciousness catches you up. Mindfulness and the like may well bring you a good result as in my mind it's aim is to operate fully in that same space where pain can be held at bay briefly and then fully. they do this 'anchoring' exercise where you lie still and pay attention to what you see, hear and feel around you. Finding bits of the body and small movements that do not cause pain then build on them.... Rebooting the mind and body if you like.... I tried it and can appreciate the idea but the sense of isolation made me depressed do I gave up. Anyway, your little night time window may be offering you a small opportunity. With love
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