What it’s like to live with chronic nerve pain everyday

ME and jen pain

This photo of me and my friend was taken when I was in some degree of nerve pain, if you have me on facebook most of the photos since my accident on there are too. Apperances can be so decieving, just like mental health difficulties a smile on someones face can hide so much. Especially in a photo, that split second that is captured can mask so much.

I dont think many people know or have heard of neuropathic pain because when I mention it to anyone new I meet they ask me what medication I take…. but there isnt anything I can take for it, nothing touches it no opiates like morphine, nothing. Last year I had the ambulance out and they gave me gas and air for it, that didnt work either. Over the last nearly 7 years I have tried every single painkiller and every nerve pain tablet going. I even tried chinese herbs that I had to cook up everyday ! The pain is coming from where I damaged my spinal cord in my fall, I imagine it as loose nerves like wires twicthing in my back but I feel it in my feet and legs.

Its weird you would think Jumping fifty foot and breaking your back would cause a lot of instant pain, but I can’t ever remember being in pain after my accident. My nerve pain though started a few months after my 5 month stay in Hopsital. To begin with it was just occasional and I would bash my feet together to try get rid of it. Even though I cant feel my feet thats where I get most of the pain. Honestly I cannot put into words what it feels like. I cant compare it to anything I have ever felt before, its not like a headache, toothache or stomach ache, its not an ache. Maybe thats one way of describing it, its definetly not an ache!! It shoots , stabs, burns and it can be so sharp, It can be in both feet or sometimes be in five different places at once , or shooting up my legs aswell as my feet , also sometimes in my toes and I have in the past actually been screaming in agony.  Just two weeks ago I was taken into A and E because I was in so much pain, my sister was crying because she didnt know what to do, I knew going to hospital wouldnt do anything and I was right, I got there and they put me on a morphine drip and it did nothing. I just cried and cried.

I cant imagine how helpless my friends and family feel watching me in this pain and recieving text messages from me constantly saying Im in pain, there reply is often- I wish I could do something. Sometimes some friends say I wish we could all have it in shifts to give you a break. I feel awful making them feel so hopeless but I just feel so alone with the pain that I break down to my friends and family with it.

best friends

Some days are a lot worse than others and I can just about try manage it now but 99 per cent of the time I am in some degree of pain in my feet or legs. And if it isnt hurting too badly its this awkward tickle feeling in the core of my foot that drives me nuts!!  I have such a high pain threshold now , the pain I get often now, 6 years ago would make me scream in agony and make me bed bound but although it still really really hurts, sometimes I just have to get on with it otherwise I have no life at all, but it does sadden me that that is how I live my life. There are times where it is literally 10/10 for pain and I cant get out of bed. My second year at University was spent mostly in bed in my room or smoking cigerettes out the front of where I lived.

It’s not all doom and gloom as this blog may sound though, because if there is any positive I can take from this suffering of being in pain is that when I get moments of less pain I have just learnt to live life to the full. I have to. I have to seize the oppurtunity to have fun while I can.

twins     crew

 

me kez jess

If I get the oppurtunity to do something and the pain is less I actually get really excited even if it is just going down the local pub!! There have been certain years since my accident that have been horrendous and I have missed out on so many social get togethers and events. So sometimes I feel like I am making up for lost time!! I dont even drink but I just have so much fun.( although these first two photos were an exception !! ) 

crazy        hot tub

strad

One of the hardest things about living with this pain is the lack of sleep I have. You cannot sleep with this pain when It is sharp even with sleeping tablets , so this means very long nights of being in agony and it is just so lonely. When I lived at my parents I loved it when It got to about 6am because I knew my mum would be up so I had someone to talk with and cry with sometimes.

My older brother drives to work quite early so quite often we will phone each other which is really nice and at the minute a few of my friends are away abroad travelling so the time difference works out well for my sleeping regime so can sometimes have a friend to chat to in the night!!

harkeston

Although sometimes, the pain is so bad I cant use my phone, so in that case I Just lay there and keep swapping postitions thinking I will be more comfortable if I turn over , but the pain is still there shooting , stabbing and striking through my feet however I lay. And sometimes when I do sleep it will wake me up because its so sharp and I get so hot because im constantly moving. It is horrible It really is. And if I don’t sleep for a few days and nights in a row I get quite anxious as lack of sleep can trigger me to get ill/manic with the bi polar, so sleep is essential to my mental wellbeing. 

The pain at night has gotten a lot better this last year , because before, I was awake for say three days and nights in a row , and once at uni a whole week. That week I actually literally thought I was going to die But I just couldnt get to sleep with the pain it hurt so much and I wasnt getting any relief from it. At uni one friend had very odd sleeping patterns!! so would sit outside with me at 3am.

me and maz

The week I was awake my friends there couldnt believe that I still hadnt slept it just got so ridiculous!! When I get the days of really bad pain and when the long nights go over a few days in a row I honestly just want to not be alive its just so horrible to say that but it is honestly torture and thats the reality of how I feel when I am in despair sometimes.

I have had a lot of hope these last two years that things will one day get better. A few hours before these photos below were taken at the local festival though, I had been to hospital in London and recieved the devesating news that the operation was denied to help cure my pain. I have been waiting two years for this operation so currently I honestly feel heartbroken and completly crushed  , I went down to London in high spirits despite being in pain, because I literally thought the surgeon was going to tell me a date for my operation. He told me though that the operation wont work because I have damaged my spinal cord too severely. I cried the whole way home, I was still in pain and felt so sad but I had been looking forward to this festival all year So I still went, I had a great time, I was nearly crying at times but I tried to forget the bad news and I am so glad I went as I had such a laugh with my friends.

fest                   festi

dave                                     bouncy

The opeartion is called a spinal cord stimulator, it sounded amazing which is why I am so so gutted as I had high hopes of it helping me live a pain free life. They basically fit wires down your spine and you have a control box fitted under your skin near your stomach then you have a remote that has lots of settings which controls the device, the idea is that it creates a new sensation where the pain is. The surgeon was so lovely but he just wasnt hopefull it would work for me and he said I am doing really well coping. He said he will try it in another year but he doesnt want to set me up to fail, and first he would like me to go into hospital for a three week stay in London to go through a pain management course. It isnt going to get rid of my pain it just helps you learn to live with it. I said I will do it as any help could be benefical, it costs the NHS 12 thousand pounds each patient to do this course so hopefully I will get something out of it. He wants me to do this before attempting the operation so that I am prepared for if it doesn’t work.

This last week since hospital when I have been in really bad pain I have been despairing and crying so much because before I had in my head – its ok Rach -one day you will have the operation and it will all go away, so now I dont really know how to feel or what to think because now that day may never come.

My work are really understanding and have let me cut to three days because I was finding it too difficult with the pain and lack of sleep,so I now have Tuesdays and Thursdays off so It gives me a chance to catch up on sleep and knowing I have a day off inbetween each day makes a huge difference. I am determined to keep my job because I have worked so hard to get to where I am and even though it is hard going to work in pain and I will sit there at my desk sometimes in despair and shaking my legs, sometimes it can be a slight distraction and I do not want to sit around my house all day doing nothing. But if I am still struggling too much there may be no other option but to leave , because I cant predict the pain or when I am going to sleep it makes it very difficult…. but I am seeing how three days goes!!

bed crew

I now have moved out on my own and it is great! I do struggle though but I have a lot of support. Everything takes me longer like the cleaning and going food shopping, and with the pain I have to make sure I stock up on everything because if I have a bad run of the pain it can make me incapable of getting out and I cant bare to drive when the pain is bad so I have to plan ahead. Preparing food can be difficult when in pain but I just about manage ! I do have loads of tomatoe soup , baked beans and spaghetti hoops for when life gets too hard!! haha . 

I know I am in a wheelchair and people may look at me a think aw poor her sort of thing. The thing is I am really happy with how I am physically, despite what they said I re learnt to walk with my leg supports and crutches and I have accepted that I will always be in a wheelchair and it really doesnt bother me. I have dealt with my accident but it is just the pain that ties me to my accident. When I am in pain I think – why did I have to have this accident? because now I have this pain and it makes me so sad to think what has happend to me and thats when I wish it hadnt happend. I just want to move on completly but the pain is something I cant control and it effects me everyday and it holds me back. I long desperately to be like my friends, I wish sometimes I could do the things they do and that I wasn’t in this situation with the pain. And there really is nothing more that I want, than to be able to get in bed every night and feel comfortable, I would love that. 

hosp life

For the first time last weekend I met someone else who suffers similar nerve pain to me and It was so nice to just chat about it, that person said exactly the same as me , theres just nothing like it and they are just in tears with it becuase nothing works and it hurts so so much. Hopefully when I do my pain management it will really help talking to others in the same situation. And in a year they will try the operation so I must stay positive!! Although easier said than done most of the time! Im going to try my very best to not give up and none of my amazing friends and family around me will let me either!!

I have written this whole blog in pain and it has helped distract me so that is definetly a positive of writing!! Please share this if you know someone who lives with chronic pain, after meeting someone else last week with nerve pain I realised the benefit of hearing anothers story of their pain. And after getting the disapointing news of my operation I thought writing it down would help, so if you have read till the end thanks for reading !! – Rach

me an j dog

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