I now know today was to much , pity was going good, thought is was to be good to be true.
Its like the door has suddenly opened, cold comes in , so cold , I hurt all over the brain is hurting , right , thanks , have compassion for myself , this does not feel like this is going to work right now ,I can feel my side hurting my leg won’t work properly, my foot won’t pick up, I feel paralysed in the body and brain , I am looking through a rain storm , all misty , great how does this happen . I try not to think my old thoughts of hell and suicidal thoughts , life has been better since the Optimise course, I must engage, Stop, recognise the situation um breathe , ok I have had all my meds, not enough, I will allow myself some extras, plus music powerful , head set on for this situation turn it up and pick up the beat , what Taylor swift ok yes she can get in deep , helps if you concentrate on the lyrics my brain while in distress seems to twist the words, more warm clothing , heater up , lying on the sofa , excepting this is life a new life , so ok I will think about compassion, really ok they seem to know there stuff , so I will be compassionate about my body hurting all over and bits have a malfunction, so the brain is glitching and I am twitching, sorry not funny. Let’s be positive I have a software problem going on with my brain , could be worse .
So how am I doing , micro extra pain dose working with the beat of the music my new empathy of the new me living with both Chronic pain and a body with a mind of its own a new me what fun .
So I recognise lying here in the warm , lovely music , in a loving house with a beautiful wife, I think , I know I have dropped the volume level on my pain , distraction of trying to type this to all you beautiful people sadly living or living with somebody with either a disability or pain , we struggle with our mental health, sorry I mean I struggle . Well not surprising once I was what I think I know was a life as a normal , pain free human . Is this a prison sentence, I often think but I don’t know what for. Really want you all to know yes it works , we have to push through , distraction while in pain works , it’s just hard , to recognise my situation helps, rather than thinking bad thoughts of knife blades and jumping off cliffs , I feel I can embrace this unstable universe I am now living in with a new perspective on how I choose to manage this diabolical situation is the outcome. I am not sure I meant to write that bit but what I know is thanks to bringing in compassion and recognition and using thinking strategies, pushing through not forgetting all in my emergency tool kit , not letting my emotions run away instead, a warm drink, maybe a hot bath, don’t forget for me a lidocaine plaster, lower L5 S1 , go and give my wife a cuddle and not forget we are not the only one suffering our loved ones do as well feeling hopeless as what to do for us. I am just so grateful they have stuck with this mess of a person I am now. I am working hard to improve things , Thame the Beast how true , bloody amazing what an experience one I wish would go away like a nightmare.
so where am I , well it’s true I do stop breathe , recognise the situation, drop anchor , act , engage as many senses as I can sight , in writing this , music up load , feel warmth, Taste , smell and yes the pain has come down with the help of all , I have just written about , why because , I just want you to know you are not alone , I hope I have given a few tips that work for me to you.
I am sorry you suffer and I really hope me speaking from my heart while I was in this diabolical trauma helps you. We can learn , we can bring the volume level down .
Love to you all David xxx look forward to tomorrow.
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Crystallmatters
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I loved the self-compassion shown in your post. I know it can be hard to implement strategies that can help with pain/mental health so well done! You've shared some great examples, such as having a bath, seeking comfort from a loved one, and using your senses. I find using my senses very helpful for grounding myself (eg noticing the touch of my feet on the floor, identifying what I can see and hear around me). You mentioned 'we can learn, we can bring the volume level down' - I agree 🙂
You may have already seen these YouTube videos but sharing in case you haven't 1) 'Pain and Me: Tamar Pincus talks about chronic pain, acceptance and commitment' 2) 'Tame The Beast — It's time to rethink persistent pain' (you can search these on YouTube)
If you are struggling with your mental health, which unfortunately is common with chronic pain, please do remember there are places you can reach out to especially if you experience a crisis nhs.uk/nhs-services/mental-...
Thank you very kind words , I will look at those You Tube videos.
I am pleased you share , that you believe I am able to bring the pain levels down with the different strategies. The site and your help is amazing , Thank you again x
Thanks for the encouraging post. I have so much pain. Besides the arthritis I had a tooth pulled and impacted wisdom tooth as well. My neck still hurts and radiates from the pinched nerve. I decided to help myself out before I started spiraling into a depression. After my second dose of pain meds, I decided to let my husband help. He always wants to but I am too stubborn for my own good. I guess we all come to that point and say enough trying to be as I was 10 years ago. I want you to know you are not alone and I care. I just love your post. Learning to be more relaxed with the pain.
Yes , I think from my own experience, the journey is a long road , to long , it seems with have to endure a malfunction, break of the body , followed by pain pain , cutting through us , fighting for answers that are incredibly difficult to get or impossible as pain is to complex, we don’t realise how powerful our brain is , while we do want to know something is wrong with our body or brain we need it to shut up the pain , the brain , our thoughts, emotions in my case fighting for the miracle cure or beating it with thinking I can use the power of the brain and ignore the pain , spiralled me into more pain and deep depression, worse, after one hell of a journey of amazing support, still needed.
Engaging mindfulness, compassion for me and others, I find the pain and suffering is bearable and better, why, well things I did not believe in like compassion, meditation, learning to except and work with , enjoying as you say a window with a view.
Taking medication at the right time , excepting help, not being stubborn, so true , again drops the pain levels, learning how to bring back hobbies, playing games with the family , even if just cards. .
The most powerful for me is what they taught me on the optimise program in Oxford. When things go a bit haywire with the pain , I think to engage , to stop , breathe , recognise the situation, to act with confidence , engage the senses, and yes by doing this the brain or pain fog comes down , the volume is lowered , now I am able to think straight , yes I can realise to focus on positive thoughts, embrace and do things help.
It’s early and yes I know I am going to get highs and lows , but you know , it’s true , I am starting to be able to control terrible thoughts, I am out of depression, well I hope long term. My brain my thoughts, the circle of discomfort, distress, the fight in flight massively brings me down and worse increases pain , I would of never believed it, but I think it creeps up on you.
So yes , I am so glade you are able to pick bits out of my experience and also guide me. Learning to be more relaxed of the situation, recognise what is going on in our body and brain with compassion, definitely helps me learn to be more relaxed with the pain . It’s fun experimenting with music and beat, you know if you try for a while you can tune certain tunes music into the pain and then it goes into totally manageable level.
I am for the first time able recognise there is a place I live with a sky ,fresh air , lovely people , I think a little. Less each day about anything negative, well almost and yes it is true it does bring down the volume on pain .
I hope you are asleep , you do brilliant, I pray your pain comes down , switches of for while , better if long , we are learning , loads love David x
Sorry to hear that you have had such a hard time. Chronic pain is hard especially when it first comes to stay with us, or the level of pain gets worse. Like an uninvited visitor we are not happy to see and keep trying to get rid, but keeps coming back
Self compassion and care make such a difference. At first life changes and we grieve the life we have lost, but pain isn't who we are, only part of who we are, nor does it define us. So learning how to live with it? Getting the pain under control as far as is possible helps, but then we learn how to live differently. Distraction helps, finding small joys each day, cuddles definitely help; as said above they bring the volume down! I love the view from my window out over a field with changing skies every day.
Knowing we are not alone, even though some days may seem like it.
Thank you , you speak such true meaningful words , I love the take uninvited visitor , a great expression of the true meaning of our experience, I cannot believe it has taken me over twenty years to eventually see that all the methods and fighting to beat Pain , actually lies with embracing it . Still learning but certainly after trying thousands of techniques ending up in deep despair and depression, I am now at last kind of getting it. Really is a double barrel experience, the biggest learning curve ever to be living in chronic pain , injured body status and then slowly learning that one has the power by engaging simple strategies of distraction, enjoying music , realising exercise is better than not , excepting a new me, I thank you so much for your kind words and confirmation that although it is not an easy life we now , I live it is superior to the one with the fight in flight response .
With better understanding of our conditions and excepting with compassion is the first stages for me in bringing down the suffering, the next was to use my tool kit of enjoyable distractions to get the volume level lower. Sorry you to suffer and glade we are learning all the time x x
Thank you for your wisdom. Yes, the hardest is the lifestyle changes. They seem to get more and more each year. I also am fortunate to have a beautiful view from my bed. The unique beauty and mountains surrounding our home in the desert is very calming and quiet. Sometimes I get so caught up in my pain I miss the beauty because I am so restless in pain.
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