Decided not to celebrate the new year as Santa didn't get me a new spine and I have been good all year lol! But on a more serious note, why should I celebrate another year of pain and fatigue. Knocking back all these medications and they don't do a thing for the pain. Well the amitriptyline does stop the restless leg syndrome and after taking myself off of my meds I realised that it also reduces my joint pain, not much but a little. I used to have a great sense of humour but now I find myself constantly moaning about my health. The thought of having to live in so much pain for another year sends me into depression and I have not turned 50 yet. I went to see my pain management specialist days before Christmas only to be told that I can't have my two bulging discs removed because statistics show more failures. My response to this (and no offence to anyone) was I don't mind if it fails and I can't walk because I will be paralysed, at least I won't be in so much pain. She looked at me in total disgust, but she doesn't have to live with it. She was cold hearted and I spent the next hour sobbing in another doctors office after my doctor sent me packing. What get's to me is peoples ignorance. Just because I look fit does not mean I shouldn't have a disabled badge and walk on crutches or my electric scooter. And believe me I have had many remarks made to me. I feel so angry that my 13 year old son is expected to take care of me. We live in a remote village with no public transport. He gets no rewards for what he does for me and is such a little gentleman. I have been told that if they put me on opium based pain killers (not morphine as I am allergic) but other's, no idea what that means but I will not be legally allowed to drive. WOW this just gets better, I live in the middle of nowhere. I asked to stop taking the high doses of tramadol as they were not helping with the pain, I have now been put on 1 x 300mg of Gabapentin at night. This does absolutely jack squat. Most nights I lay there for hours waiting for the new pill to work and NOTHING.

Sorry for my long message but I feel so alone, my family live 2 miles from me and never visit. Hope you all had a great Christmas and have a pain free new year. Maria x

9 Replies

  • Maria I am so sorry to read your post. I can understand your anguish about starting another year in pain and isolation. I wish people would not judge us without knowing our circumstances I think the saying "don't judge a person until you have walked a mile in their shoes" is so relevant to your situation. I some times wish these doctors were made to do that.

    I get so angry that young people are expected as you say to be a sole carer without help and get no reward for doing it he sounds a marvellous young man and you must be extremely proud of him. I know my friend lives in a small village with only the occasional bus service and she said if it was not for close friends she would never get anywhere. That you have family near by who don't visit must make life even worse.

    I don't know where you live Maria but in some parts of the country there are networks for Young Carers to get support and take part in activities worth pursuing.

    I honestly don't know what to say to you about medication as I am not medically trained in any way. I too am on a lot of meds. and they just take the edge off the pain and unfortunately it is always there in some shape or form but it sounds as though you are in a much worse state than me. Hopefully someone on the forum in a similar situation health wise can help more.

    Just be assured you are not on your own and we are here to support you. Gentle hugs.x

  • Bless you Maria, you are never alone and as you say, some medical professionals don't have a clue. Like you, I'm in constant pain and have to juggle about when to take pain relief if I'm going to drive. I think if you take at night I don't see why you should not drive the following day, I know other ppl. With Fibro who take morphine & still drive. I surpose it depends if it stays in your system, don't know. Defffo worth googling lol.

    I was recently told by pain management physio that I have got problem with hip but he sort of then went on to talk me out of getting xray & operation because it would probably make me worse.

    I came out thinking, is he mad or what...some days I can barely walk to the loo & agonising pain which never completely goes, no matter how many pain killers I take & i struggle to turn over in bed I mean how much worse can it possibly get.

    I just think it's all about money and they make you wait until you really can't move and then have to get taken to hospital in an ambulance, then maybe Then they have to do something. !!

    I don't think any of them read your medical records properly as they don't hAve time and like you, I have come out of doctors and burst into tears so many times I've lost count, it's just shear frustration.

    You are so lucky to have such a lovely lad that understands and helps you but it would be good for him to meet other young carers that help their parents. Even if online. I haven't looked but I bet there is something like young carers support. If not, there should be lol. You must be so proud of him.

    If you are on your own you should be able to claim for someone to come and help you, even if it's once a week it would give him time for himself and not worry about you.

    This forum is so good to let off steam, moan, get support. It just makes you feel better.

    As I've found for myself maybe if I can help others by supporting them because I am going through the same thing so I understand. I have also spent most of my life caring for ppl. From elderly, ppl. With learning difficulties, and physically disabled ppl. With all kinds of illness. I am also a trained counsellor and feel a bit redundant since having to retire from my job due to I'll health. So I'm loving being on here and if you ever want a chat just give me a message honey. Don't ever think you are alone.

    Sending you lots of positive energy & a hug

    Jan x

  • So sorry to hear life is so hard and apart from your young hero you arent getting much help or understanding. I don't have much advice except that to question the not allowed to drive meds.Certainly some meds do make it dangerous for people to drive ,having been a victim many years ago of being crashed into by someone who had taken drugs which impaired their mind which meant injury to me and no insurance payout to me , so staying safe and legal are important but I have to take strong drugs twice daily which affect me for a couple of hours so agreed with dsa to not drive within four hours .This means setting alarm for 5 am and 5 pm but at least I still get to drive whilst keeping me and others safe.I have been doing this now for eight years so it is worth asking .

    Take care and as previous reply look into the young carers possibility as they do that in this area which helps and recognises the amazing help children give to others .

    Best wishes

  • Maria very sorry your struggling so much. You must be filled with pride, that your son is being so helpful. Like others have said there are Young Carers groups. Really hope you can get some more Support for both of you. I take Butrans patches & still drive when possible. Sending Much Love. Jan.😍😍😍

  • I have read your post with so much pain and sorrow for what you have endured and continue to endure, and I want to gneuinely and sincerely wish you and your son all the best of luck.

    I have pasted you 3 links below to the young carers movements in the UK and I genuinely hope that there is something there that can help in some way:

    Please take care of each other and my heart and thoughts goes out to you.

    All my hopes and dreams for both of you

    Ken x

  • Hi Marie'

    Makes me sad to hear this story, as its a carbon copy off mine, the tears and the pain , and last year the Fibromyalgia

    Go back to the Gp and tell them your meds are useless, I would !, But then again , ive been through a few different tablets in Fourteen year, ranging from pain killers ,nerve ending , anti inflammatory tablets lol,.

    I had MRI thirteen years ago, and the doctor at hospital said that an operation wasn't up for discussion, told off the dangers, three bulging discs they told me then, A private Chiropractor I paid then had said there was no way that the bulging discs could be fixed without an operation, just recently, I was back at hospital for MRI a couple off wks ago, and waiting on results. Wasn't until beginning last year I been diagnosed with Fibromyalgia, and the nurse that I had seen looked at my case history and looked me in the eyes and said , You have three slipped discs, low and behold I didn't know this, hand on heart, Well ! I just broke down and said " no I have Bulging disks, he said no, slipped discs, Its eather me that's ignorant or the ignorance off me not been informed.

    I worked and ive worked hard, and ive ached , and I have packed jobs in because I couldn't cope, I can only say now I wouldn't have been doing these jobs if I was informed right off my back condition all those years ago.

    I have lived these years for far to long in this Chronic condition and hey I would jump at the chance off the op.

    Doctors don't see the person, they see a big wage packed , . and yet again it could be the fact that there isn't the money in this country, cut back all the time.

    He sounds a great wee chap your boy, thirteen years , says a lot for him, as young as he is.Marie, I'm sure there will be other help for you somewhere out there,

    So ,,I hope I don't sound as if I'm preaching , but its nice to just lift this from my chest a wee while.

    Take care and gentile Hugs.....x

  • Hi Maria, sorry you are in so much pain, I relate to the small Village and no Transport,

    I hope you find a pain relief that works for you soon, and hopefully it will lift your depression. Did you know that your Son can join Young Carers Groups, if you don't have one in your area, they will collect him once a week to meet and greet other young Carers. My Daughter was a young Carer when my Husband was ill, she went on days out, weekends on boats sailing parties all sorts, and when he is out or on trips, you can have a Carer to be with you. You can look them up through your local council. If you cannot find one in your area, get back to me and I will give you the number for my area and they will let you know where one might be for you. I wish you well .x

  • Sorry to hear u are having such trouble n pain. I have had the surgery n am worse then I was and ur doctor is correct u still have pain they just call it phantom pain. Just because something isn't there or ur paralyzed u still have pain. Ur nerves just go into hyper mode.

    I have been dealing with my pain for many years n had back surgery in 2001. Right now I am trying water therapy to help with all my nerves that are going crazy. I will pray fro u to have relief also from them crazy nerves.

    My thoughts n prayers r with u.

  • OMG. I just typed a message for everyone and it disappeared. So will just say thank you for all your kind words as I currently have a terrible migraine and it's difficult to type. Maria xxxxx

You may also like...