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waiting for laberal tear op, working, struggling and scared

Posted , 9 users are following.

victoria98900
victoria98900

Hi, I was diagnosed with fms and  hypermobility syndrome in 2010 at 32 after suffering symptoms since I was 19. I have worked since leaving college, first full time, had our little girl in 2003, and have gradually had to reduce my hours to the 15 a week that I'm struggling to do at the moment. 

I applied for pip (dla as was) earlier this year as we are seriously struggling money wise and in debt up to our ears. I have a fab family and my husband and now 11 year old daughter are amazing as are my parents, but I feel so guilty that I work 3 hours a day, get home and sleep until I pick my daughter up from school then spend all weekend sleeping so that I can get thru the next week at work. 

I am so exhausted and feel that I have no quality of life with my family-we don't go out or do things together because I'm so tired or short tempered if I haven't slept or am in pain. 

My life is just one big moan and I'm sick of hearing myself so everyone around me must be. 

I think I'm getting to the point where I need to stop work but I don't even know where to start.  Can anyone help please?  :-( x

0 likes, 38 replies

38 Replies

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  • nitropilot
    nitropilot victoria98900

    Posted

    Wow. Very similar story. Hypermobile joints mean your muscles, in spine & core especially, need to be extra strong. I can't work out anymore but yoga like stuff works very well. That's about all I can help with.
    • victoria98900
      victoria98900 nitropilot

      Posted

      Yep, used to do iyenga yoga-very lucky as my dad is a yoga teacher.  Found that I have zero core muscle strength at all and due to my hip problem have had to stop for the time being.  Hopefully will b able to re start following hip op.  I can swim although following and defo the day after I'm usually asleep! Thanks nitropilot
    • nitropilot
      nitropilot victoria98900

      Posted

      It's awesome to see people like you so proactive. No excuses and all that. If you aren't able to do one thing you find another. I love it!
  • JulieBadger
    JulieBadger victoria98900

    Posted

    Hi Victoria, I have ME/CFS, Fibromyalgia, Functional Mobility Syndrome and loads that go with ME (IBS etc) and now being checked for my heart cos it's going too fast, and I work.  Part-time, used to be full-time until the kids. Had it since I was 14ish, I'm now 37.  However, I am cutting back my hours and going to have a go at not working for maybe 6months to see if it makes any difference.  Working for myself, from home makes a huge difference to me being able to work.  I fit the hours around when I'm feeling upto it and taking the kids to school.  Thankfully I have a very supportive husband and mother-in-law. 

    Sounds like you're boom and busting.  Try to boom at work and then bust at home.  Does sound like your body can't take the work.  Understand the money issues. Put my claim into PIP in April this year and still haven't heard from them.  However, it's working in my favour at the moment cos I'm still getting worse.

    Could you do some kind of work from home with less hours which are also flexible? Maybe not in the type of work you do now but something?

    At the moment energy wise it looks like you are focusing on the work, cos you have to but the family are suffering.  Your daughter is already 11 she's not going to be a child much longer.  You already know that I'm sure but if you don't change soon it will be too late to enjoy her childhood. 

    In terms of the moods I would recommend antidepresents.  I know your parents and many on here say not to meds, but I felt alot better about the depression and stopped bitting people's heads off when they got my antipressents to the right level.  I would feel suicidal, shout at the kids, snap at hubby and mother-in-law until we get it strong enough.  It does mean I don't feel the highs I used to but I would sacrifice that to not feel those lows.  I'm also easier to live with !!!!!!

    • victoria98900
      victoria98900 JulieBadger

      Posted

      Hi Julie, I take duloxetine for depression-have just been taken off amitriptyline after about five years on it-found the 'hangover 'effect in the morning hard to cope with hence reducing my work hours and not starting work until 10am-to give me time to shower etc. I take morphine daily for the pain which makes me tired and doesn't completely get rid of the pain, just reduces it to a level I can function at.

      before the anti depressants I'm was vile-my poor long-suffering family copped for my foul tempers and outbursts and still do sometimes although  I'm nowhere near as bad as I used to be.

      like you I don't tend to get any 'high' emotion,just lows of varying degrees and times when I'm just 'ok'. It would be nice to have enough energy at weekends or in an evening to go out with my husband and daughter just for tea or even take the dog for a short walk.

      It's been a while since I've felt suicidal, but do get quite bad lows,especially when my period is due so think hormones also play a big part.

      Im defo going to look at the stopping work for a short time and see if it helps.

      Thanks for your insight and good luck xx

    • JulieBadger
      JulieBadger victoria98900

      Posted

      I bought a mobility scooter a year ago.  It lets me get out with them for longer.  Unfortunately I thought it was going to be the total answer when I heard 7 miles on a battery life (I car a 4mph version) I bought extra batteries.  Didn't realise the mental side of using a mobility scooter - trying not run over peoples toes, looking for drop-kerbs and just the visual images as you move around was going to wear me out. So I'm only on it for max 30mins at a time.  A mobility scooter could mean you could go on dog walks with them. After about the 20th time of running over the dogs paws it might even learn to avoid your wheels wink
    • victoria98900
      victoria98900 JulieBadger

      Posted

      Think my poor dog would have a heart attack! Funnily enough we sell scooters at work and I had looked at them as they're cheaper at the moment and I also get staff discount so I might look at that more seriously.

      thanks Julie xx

    • JulieBadger
      JulieBadger victoria98900

      Posted

      Dogs do adapt very quickly (something to do with how many times they are run over - but if you have a stupid one then he will just have flat paws).  You can hire one to try it out.

      Advise would be watch the lifting wait to put in the car.  Just had to trade mine in after a year cos it was too heavy for me.  There are quite cheap mobility scooters on the internet.  Mine which is second hand was £250 with new batteries.  Sure does make my life easier! xx

  • brenda59210
    brenda59210 victoria98900

    Posted

    Dear Victoria

    I just wanted to say that in my experience most operations have helped to improve my quality of life; very much so. There were two that did not improve my condition but did not make it worse either. If I had not had the successful ops I would certainly be in a worse place so I hope to reassure you about your coming op. If you ask the surgeon he will give you the odds but they have to do this. I am hoping that you will be better once it is done. Is your doctor keen for you to have this op?

    Sometimes if one thing goes right other things start to fall into place.

    Wishing you all the best

    Brenda

    • victoria98900
      victoria98900 brenda59210

      Posted

      Hi Brenda, thank you for that-yes the specialist that I saw said that 87%of people having the op showed an improvement so he defo thinks that it will help. Your experience has helped,I think that as long as I don't feel any worse it will defo be worth a go. It's just that I've never had surgery before and when I had the arthroscopy I had a panic attack and threw up all over the place-slightly embarassing! Not to mention messy as I was laid on my back redface The pain and swelling in my hip is getting a bit beyond a joke now so my pre op is tomorrow with the operation planned for 10th December .

      thanks again for your advice and help,much appreciated xx

  • elaine85769
    elaine85769 victoria98900

    Posted

    Hello Victoria,

    You first have to admit to your condition and accept it.Admitting you accept the condition of Fibro will help you along the way.

    It's nice to consider others and their expectations of you but YOU have to accept and admit to yourself what your limitations are whenever firbo makes a calling.

    Ex.Today I washed my hair n the shower and was totally exhausted-I said okay cannot do anything for at least 30mins or so,need to acknowledge I am not in charge right,now.

    Last week,neck pain-stopped again.

    Your job and your family are most important with your Firbom.Since,it gives you good days and may strike any area on any given DAY-are the rules of the condition.Admit/accept and try to deal with it,accordingly.

    AND,never feel you are making these conditions up,u alone know your body.If you do admit what u can/cannot do..u will be fine and annoyed by your condition(smile)

    • victoria98900
      victoria98900 elaine85769

      Posted

      That sounds sensible advice! I think that sometimes I push myself too far then regret it for days after as all I want to do is sleep. When I feel ok (rarely these days) I do too much,I guess I need to learn my limits. Working on it.... And the smiling !! Thank you cheesygrin
  • denise56617
    denise56617 victoria98900

    Posted

    Hi Victoria, I had a labral tear op 4 years ago and I definitely think it was a good thing. I was in constant pain and could only walk very short distances. It took a while to recover after the operation but eventually I was able to do most of the things I had had to give up. This was before I started with Fibro - I was only diagnosed in February. I am working part time but far fewer hours than I was previously. Before diagnosis I felt exactly like you and was dragging myself to work each day.

    I assume you will be off work for a while after your op. You could use this time to try and pace yourself so that you are not boom and bust all the time. You sound like you need to find some time for yourself. I know this is very difficult with a young family but a CBT counsellor explained to me how important it is. I used to carry on until I had done everything (housework etc) or was too exhausted to do anything else.

    I have read a really useful book 'Mindfulness for Health'. If you could get hold of a copy and read it I am sure you will recognise yourself in many of the chapters and might find some useful advice.

    I am still in some pain and sometimes feel exhausted but nowhere near as bad as I was a few months ago.

    I hope your op goes well and that you start to feel a little better soon. Take care X

    • victoria98900
      victoria98900 denise56617

      Posted

      Hi Denise, how long did it take you to recover following the surgery? I'm booked in for the beginning of December and just worried that I'm going to struggle to use crutches due to the pain in my hands and arms which I get when I have to use a crutch to get about on bad days at the moment.

      i do have a wheelchair but am reluctant to use it . Xx

    • denise56617
      denise56617 victoria98900

      Posted

      I only used the crutches for 2-3weeks as I had keyhole surgery so I healed a lot quicker. I had a lot of physio after my op and also had to rest a lot with my leg up. The enforced rest should help with you fatigue as well. I went back to work after 4 weeks but looking back I realise that was way too soon. My leg was very weak afterwards-it is very important to keep up with the physio exercises even if you can't do anything else. I hope your op goes well and that you are able to hobble round by Christmas.x
    • victoria98900
      victoria98900 denise56617

      Posted

      Hi Denise, been for my pre op today and they've told me I have to take at least six weeks off work! Given me crutches-that should be fun as I find weight bearing on my arms very hard going at the best of times, but like you say,I'm hoping the enforced rest will at least do me some good.

      I'm supposed to be having keyhole surgery but they can't give me a definite answer on what exactly they are going to do until they get the camera in and see what exactly is going on in the joint redface I'm supposed to be in for day surgery but they've told me to take an overnight bag just in case and asked me to sign a consent form for a blood transfusion if I should need one which scared me a bit but they assured me it's just a precaution.

      I've been given all the info and also a sheet of the exercises I have to do when I get home-can't do them now as I have no core muscle so this is going to be interesting!

      Thank you for the info, you've given me a better idea of what to expect. Here's to me being mobile by Christmas! Xx

    • denise56617
      denise56617 victoria98900

      Posted

      I ended up staying in hospital overnight so don't worry if they keep you in. I hope they offer you some physio afterwards as it really helped me. I was able to bear a bit of weight on my foot so didn't have to use 2 crutches for very long. I think 6 weeks off work sounds about right.

      Rest as much as you can and enjoy Christmas with your family.

      Contact me if you want any further help before or after your op.

    • victoria98900
      victoria98900 denise56617

      Posted

      Thank you Denise-didn't come on here yesterday -lot of pain after the messing with my hip joint at pre op, not to mention the mile walk across the hospital to get to my destination. I finished work took a morphine and that was me in bed asleep for the rest of the day!

      i am having Physio straight after my op so it looks as though they've got everything in place ready to go.

      im not too worried about staying in overnight-if I need to the that's what will have to happen, at least I'll be looked after properly.

      thanks agin for the advice x

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