Have lost the will to carry on.... Uk dweller

Discussion in 'Fibromyalgia Main Forum' started by bubblesgirl, Feb 23, 2006.

  1. bubblesgirl

    bubblesgirl New Member

    Thank you if you choose to read this... It's for my own benefit more than anyone elses. It's time to start being honest with myself...

    I haven't been on the site for several months as I have been trying to convince myself I am coping.... The truth is I am not coping with anything. I have been trying to work in a full time, very demanding job, in which I care for the lives of other people and fear that I am not doing a very good job.

    My boss is being very supportive but has noticed I am not as well as I should be. After several months wait I met with the Occupational Health GP last week. He asked me how I was coping with the pain and I explained how it is. He asked me what I needed from him and I honestly said I didn't know.

    He explained that he had read my file and recognised that we last saw each other about three years ago. He summed up by saying that he thought he ought to sign me off work immediately. That I am unfit to work. My brain went into overdrive, panic and fear. What does this mean? How can it be? I feel fine, I am not ill, ill is when you are in bed, unable to function, unable to do anything, needing others to care for you. I am not like that am I??

    Of course I'm not, but as I have said on the site before I am my own worst enemy. I have tried so hard to fight the pain, ignore the feeling of being out of control.Ignoring the fact that I can't make decision's any more.

    The pain is so bad that on most days I don't want to get out of bed.I don't want to engage with anyone, I can't abide the noise and bustle of others around me. I smile but I am crying. I can't cope with life and all its demands. I don't want to admit it but I think the fibro... has finally caused an emotional depression, which is also causing the spiralling effect.

    A stranger, a GP has read my file and summed me up. I am unfit for work. He knows what I know and now I am wracked with fear. He has made me face reality.

    I sense I am starting a new road and I am scared.I still have bills to pay, I still have to eat, where am I going to find the income from? I know I can't work and care for others anymore.I am struggling to care for myself.

    It's time to make some life changing decisions and start to care for myself. I live in the UK and know our laws are slightly different to the USA. I would be really grateful to hear from anyone who has been through or is going through the same stages, I am not sure I can do this alone.
  2. Jana1

    Jana1 New Member

    Konrad, this is the most helpful thing I have ever read on this board. I think it is going to change a lot of things..you wrote...

    "I love to read, be on computer, see my kids and grandkids, be at peace and enjoy the quiet. Its very good for me to just BE and let go of defining myself by what I DO."


    Thank you, thank you,


  3. Jana1

    Jana1 New Member

    It sounds in your letter you have had a happy and useful life, for your family and those that you work with.

    I think Konrad's advice is the very thing for you, as it is for me!

    You aren't alone...we all know that..

  4. sarahann61

    sarahann61 New Member

    From what I have read, you have a wonderful family, a very good & supporting Dr., and you have all of the wonderful people, on this board.

    I thought 11 yrs. ago ,I would be in a Nursing Home by now, in a wheel chair, but I'm not.. I am still able to walk, and I am more in control, than I was, when I worked.

    I was in the business of helping people and I felt good about it, in the beginning. But, I was beginning to think I was in more pain , than the ones, I was taking care of.

    I would get so depressed, when I couldn't seem to get it all done ,in a day.. I would get depressed calling in, because ,I knew it made the day harder, on the ones left to work. And, they didn't always believe me.

    I tried a lot of diff. fields, trying to keep working. I think ,I knew a long time ago, I wasn't able, but had a lot of people, pushing me on. After all, If I just quit doing anything, I would for sure ,be crippled, in their minds...I finally quit and applied for disability, and won it, after being turned down the first time....

    Now, I can pace myself, and I have never quit doing anything.. I just do what I can, My DH says, that is all I should do... He will make sure ,I sleep till I wake up, on my own. Because, he knows how hard it is, for me to sleep.
    But, it took a long time, for him to understand..

    Konrad gave you some great advise, and I hope you will believe, it will get better. You will still have a lot to contribute, to your family ,and friends.. And, you can share your burdens, and share your improvements with us, anytime.

    I guess, we are not so far away, because we are all walking down this road, together. We have diff. problems, diff. lifes, and diff. goals. But, it is like we are all the same, because, we have been down ,that same road, too.......It is like ,we are one.....

    Just take one day at a time, because this one day, is all we can handle, at a time.. Tomorrow, will be here before we know it .. But, if we have looked toward it, and got depressed.. We have lost the best, that today, had for us...

  5. lilchisler

    lilchisler New Member

    First of all, Bubblesgirl, I want to say that you are not alone! This board was a lifeline for me a few years back and I found understanding and support here when it was nowhere else to be found.

    My user name was "stillable" back then...You have found yourself in a place where you may not be "still able" to do the things that you have been doing for a long time, but that does not mean that your are not "still able" to have a fulfilling life.

    You are at a new beginning and also, for me, was the hardest place to get to in this illness...to admit that I could no longer be all things to all people all the time.

    Looking back, I neglected myself so badly while in denial of this sickness that it took me 2 years of not working and a lot of medical experience to get me through.

    I had tried for years to get through it all med free. I think for me, it was a admittal of defeat if I had to be on medication...like there was something wrong with me that I should be able to control without the help of drugs.

    I work full time. I, too have myself in a financial "bad place" right now, but I am not giving up.
    Things have a way of working themselves out when we "face them".

    Konrad started you off with one of the best posts I have ever read. It renewed my spirit again. I am in the middle of a pretty rough flare...and then others followed with just touching, caring words of wisdom which tells me that they too, have been through something like you and I,
    possibly something much worse...but they have a passion to want to help people like you and I.

    Sometimes the best medicine is knowing that you are not alone, that you have not "lost your mind" and that this DD is real.

    It does not define me either.
    It is what I have, but it is not "who I am".

    Godspeed to more peaceful days to you.

    I thik too, that when you have been in the business of caring for others, that somewhere inside we think it is wrong to give that same kind of care to ourselves. almost as if it were sin....

    Well, if you were one of the people that you care for...what would you do to make their life more comfortable?...
    now reflect on that...You deserve to give that same kind of care to yourself.

    It's not about whether you deserve it or not, it's that you need it.

    I think the stress lifted so much once I decided that I was truly ill and that there were going to be good days an bad. I was not going to spend the rest of my life trying to explain that to everyone.

    I was going to spend in on getting informed and learning as much as I could to help myself...not in a selfish manner.

    It is the simple truth...you are no good to anyone else either until you are right with yourself.

    I, too am going to copy Konrad's post and the others and hang them up to read everyday.

    Be encouraged, there are better days than these.
    There is sunshine and light even in the darkest of hours. don't give up...

    coming to terms with the fact that your life is not the same as it once was...

    is not the same thing as your life being over.

    You are in my prayers and thanks to all who posted.

    I am forever greatful for your knowledge, hope and love.

    'lilchisler' or "stillable"
  6. angeldust

    angeldust New Member

    I'm from the UK too, dont be disheartened finding a good Dr could make the world of difference... for me this means paying privately to see a good Dr and a physiotherapist, I receive Incapacity Benefit and Disability Living Allowance, I spend most of it on Medical Bills.

    NHS services are improving too although it depends where you live.

    For the pain and depression definately try antidepressants and be patient it can take a while to find the right one and to feel the benefits - dont put it off go today!

    I noticed in your profile that you live in the South East, I live on the Surrey/Sussex border if you would like to know which Dr I see I can give you the details.

    I would also be aware that just because one GP has signed you off work, doesn't necessarily mean that you will pass an "incapable of working" test as devised by the benefits mob. I would seek advice, go to the Jobcentre Plus as soon as possible speak to a Disability Advisor or go to Citizens Advice. There is plenty of help available and no need to worry. :)
  7. smiffy79

    smiffy79 New Member

    i too am from the uk and i am on full mobiity and lower rate care which helps out financially but i plan to come off both in order to start my own business.

    do you have a partner or kids? i get working tax credit and the kids child benefit whihc again helps out no end and my husband works.

    there is no shame in not working and taking time for your self. take the time to do as i have done and learn about each symptom one by one so you have the best idea on how to tackle them.
    right now i am on tizanidine,tramadol and amitriptyline (for sleep). i understand your feelings of being sad,low or out of contriol but that does not neccesarily spell depression.
    you have the support of a good dr and thats great because thats usually half the battle.

    what about your home? is that rented or mortaged? if its privatly rented your local council can help you pay the rent. once on dla you can get your roof insulated and wall cavity done for free even if you own your house which will help with the bills in the long run.
    you can do this and you can still be strong, being strong is not trying to force yourself to work everyday and try to be 'normal' being strong is standing up and meeting head on your new set of rules and finding your new boundrys.
    we can operate on a daily level so long as we learn how to face what holds us back.
  8. Sheila1366

    Sheila1366 New Member

    You are gonna be ok.Maybe this is just a break.But it is obvious you need to take some time off to get well.

    Take this time to rest,read abook,catch up with friends.

    Don't look at it is being too sick to work.Just think of it as a retreat for a little while.

  9. shelbo

    shelbo New Member

    Bump Shelbo
  10. Cromwell

    Cromwell New Member

    Maybe you got a really understanding doctor there. Someone who knows pain?

    Why not just take a break. In the UK you get far more support than here in USA with free meds and docs and such, so why not just take advantage of it and try and give yourself a healing time.

    Love Anne C
  11. marw

    marw New Member

    Hi there,

    I just read your post. It sounds so much like me. I just made a post saying the same things pretty much that you are saying. Mine is called "I Can't Stand this anymore! What do you do?" I got some good answers, too, like you did, so maybe you might want to read that one, too.

    I sooo sympathize with you. To be honest, I quit my job, because I was afraid of being fired, as well as the hideous pain and the inability to think as well as I had been doing. I had an unsympathetic boss, and i did not dare let her know anything was wrong. When I got to the point I couldn't write the Lesson plans anymore (was a teacher in late years, was a dancer before that), I knew I had to stop working. Besides, there would have come a day when not even will-power could have kept me from limping, and they would have found out. I took an early retirement, so now I am living hand to mouth for money. THe pension was very, very small. But at least it was there!! I was so lucky that I didn't get this Disease until later in life, so I had time to build a little in that pension.

    Today I am having a very bad day! THe pain is unreal. I have been crying and crying. But the meds are kicking in now so I will go rest.

    I will try to write you a more up-beat post next time. I hope I haven't depressed you more.

    I just wanted you to know that you are not alone.

    ANd to think you for making this post. It helped me.

  12. lilchisler

    lilchisler New Member

    Hi ,
    I read your post to Bubbles and I thought how tough work must have been on you as a teacher...every day, having to really be at your best with an illness such as this. God Bless You for you giving that kind effort for so long.

    I was touched and saddened to at how this illness must have affected you concerning your muscle agility after being a dancer...where there is such grace and smoothness to the body.

    You are encouragement to me just having you say "you are one of the lucky ones having gotten this illness later in life".

    I don't know if I would call that Lucky or not but you are a very gracious, unselfish person. I could feel your compassion and your pain, yet I heard hope written in between the lines.

    There are a lot of caregivers on this message board...who dedicated their lives to taking care of someone elses needs before their own..like doctors and nurses, teachers and housekeepers, mothers and fathers, daughters and sons...
    whatever their occupation...

    I think we are people who neglected our own needs for a very long time because we were busy meeting someone elses...probably because we felt they really needed us.

    THere is so much honor in that!!

    I am humbled when I hear how tough a day someone has had when I am having a pretty good day and I am still complaining.

    Every reply to this post has moved me to tears.

    I guess I had thought that it was just me who felt alone, or an anchor around someone's neck, or it was my fault...you name it.

    Words from others hearts are always so helpful.
    THanks to all who posted here/
  13. KelB

    KelB New Member

    I'm in the UK with CFS and oh how I recognised your feelings when I read your post!

    In December 04 I was signed off for a month, then another month in January 05 then THREE months in Februay 05. When my GP signed me off for three months, I thought my job had gone forever.

    My first advice would be - stop worrying about the bills for the immediate future. In the UK you are entitled to six months off sick on full pay. At the moment, it doesn't sound like your GP is talking about you being permanently unable to work. Maybe he just wants to see if giving you some quality "You Time" will help?

    I was lucky enough to have really good support. I live in Dorset, near an NHS Chronic Fatigue Unit that actually gives very good advice and help (they're not just the standard "CBT & GET" merchants). See if you or your GP can find anything GOOD tailored for Fibro in your area and maybe use the time off sick to follow up on those. At the very least, your GP needs to help you with the depression angle and time off work is a very good idea to allow any treatment to work.

    You could find afer a few months of breathing space away from work, that your situation feels a little different.

    It might also be possible to speak to your magnager about a different, less stressful role and maybe coming back to work part time for a while? I've done that myself (my employer has been fabulous) and have been gradually building up my hours since I started back in May 05. I have stepped back from the very active job that I used to perform and now do a lot of background statistical work (that nobody's had time for before) and this is helping the rest of the team identify issues and focus their efforts.

    I started out on 3 hours a day, 3 days a week, working from home. I'm currently on 6.5 hours a day, 4 days a week, spending 4.5 hours hours per day in the office and working from home the rest of the time. I'd like to get back to full time work (37.5 hours a week, 5 days a week plus callout overnight, weekends and holidays), but I realise that this might not be possible. However that's an issue for another day.

    I think now is the time to start living one day at a time and coming to terms with how your life has changed, rather than carrying on fighting Fibro and trying to live completely as you did before.

    Please keep us posted on how you get on. In the meantime - grab that time off work with both hands and take some very long and soothing baths!

  14. KelB

    KelB New Member

    Hi bubblesgirl - found this on page 4 and the last post was only a day ago! The board's moving really fast these days.

    How are you feeling?
  15. laura81655

    laura81655 New Member

    such excellent advice here. Hope you will reply soon....