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GOD I HATE THIS ILLNESS

Posted , 7 users are following.

MSME
MSME

Hi, I was diagnosed with CFS/ME last November, I had a car accident and had been going down hill since, I was walking like I was drunk, my balence was a mess, it would feel like I am about to fall everytime I got up, I had to hold onto doors etc, I could'nt remember words in conversation, sleep was non existed or broken, I was exusted all of the time, I could stay in bed forever and still wake up so tired like I didn't have refreshed sleep, When I did manage to get out of bed, even putting my feet on the ground hurt like hell and to get down/up the stairs was like climbing a mountain, I could no longer take it and went to dr, he told me I had CFS/ME and to do GET, what a wast of time, I couldn't do that, I can't even get out of bed suficently, so I have been resting as much as I can, not feeling much improvement though, as when I do manage to go down stairs all I do is sit on sofa, then say to my family I am going up to lay down, this is my life since getting the diognosis, when I do manage to go out shopping with my partner, my god do I pay for it, it lay's me up in bed for two days, pushing the hoover is a struggle, so I don't do anything now but just sit/lay about, I tried to do dinner, but burned it as I forgot about it, so this is my life for god knows how long.  GOD I HATE THIS ILLNESS.  

1 like, 11 replies

11 Replies

  • dawn97
    dawn97 MSME

    Posted

    Hi there I'm so sorry to read the desperation in your words !! This is an awfull illness that not many people understand & living with it isn't funny !!!!!  I hope you can get some help from your drs keep on to them don't isolate yourself nag the hell out of these people after all that's what they are there for to help us !!!   Please try & do something nice for you even if it's whatch your favourate film you need to feel like your still part of the human race !! Belive me it's easy to drop off the land of the living it's not fair that we have to feel so alone before we get the help we need !!

    goid luck & try not to worry regards dawn xxx

    • MSME
      MSME dawn97

      Posted

      Hi Dawn97 and thank you for understanding and your kind words, I have managed to go back to drs but not dr that Diagnosed me, he has left, all this new dr said was keep thaking my anti depressants they will help with the symptoms!!!, I came off them hoping to change the symptoms, well at least I got her to send me for blood tests, 9 of them, so fingers crossed, but I won't be going back to her for the results.
  • dawn97
    dawn97 MSME

    Posted

    Try not to lose hope you will have to knock on plenty of doors before you get answers the truth is it will try your patience & there will be tears but if you keep going they can find the right mix of meds& treatments that can help ! Everyone's different so not one pill suits all I'm afraid I've been ill 14 yrs & it's still hard but I can live & enjoy life but just not how I used to !! Take care dawn x
  • sunwyn66141
    sunwyn66141 MSME

    Posted

    Hi,

    I am sorry to hear about your problems.

    I don't have any help to offer, just to say that I understand what you are suffering and that I will pray for you.

    Sunny

  • jeanp
    jeanp MSME

    Posted

    Hi there, sorry to hear you are feeling so awful. I hope the blood tests show something which can be fixed (low iron or B12 or something) so that you can feel better. I am a bit puzzled that your doctor would diagnose you with CFS/ME without doing a whole heap of tests as usually they have to eliminate other causes before saying it is CFS/ME.

    Don't give up hope, you can recover, it will just take time. make sure you are eating really well and not beating yourself up for not doing what you feel you should be. I too was holding onto walls, doors furnitruer and walking around as if I was a zombie, but am now able to do more.

    Jean

    • MSME
      MSME jeanp

      Posted

      Hi, I had blood done b4 dx, as my mum has thyroid problems, IBS, COPD and arthrites and my dad had diabities, I felt more investigations were needed as not getting better.  Thank you for advice and will take a lok at website.
  • JennyWren8
    JennyWren8 MSME

    Posted

    Really feel for you.  I tried the anti-depressants right at the beginning and they made me much worse - GET also made me very ill.  I found the NHS gave me some very poor advice and to be honest, I don't think they really understand the illness!

    The best protocols I've found are from private clinics. They do a very thorough history and I persuaded my GP to do most of the blood tests they require on the NHS so my nutrition is formulated specifically for healing my worst symptoms (also pinpointing causes and ruling out other illnesses)  for example I was very low in iron, though in the 'normal' range for my GP, the OHC pointed out I was only 3 points from abnormal and prettymuch everytime I had a period I would be dipping into abnormal results.  

    They also have very specific advice on pacing, depending on illness stage.  So depending on where you are in the illness stage their will recommend slightly different pacing protocols - such as no exercise in the acute phases, but gentle exercises in mild phases and how to tell the differences.  Seeing the OHC was the only thing that has stopped my steady decline further into very severe M.E.  I am in the moderate catagory now with dips into severe after about 2 years on the protocols.  This year I went to the cinema for the 1st time in 6 years.  The NHS advice seemed to push me deeper into the illness and I had the worst relapse into severe after GET & CBT.  I have a much deeper understanding of the illness now and feel the NHS had been giving me incorrect advice after all these years.  I've tried prettymuch everything and the OHC advice has been the most helpful  (also some of the most expensive, but I feel if I had this advice at the beginning, my M.E. would never have got so bad in the first place.)  

    Give up pushing through and take up pacing, it will allow you to do so much more!  You will learn when you can do stuff and when you really need to rest.  Be kind to yourself.  Your body needs to heal, so try and do things that expand your wellbeing and drop anything in your life which depletes you  (like hoovering).  You can hoover all you like when you're better!  Right now, it's not a priority.  Right now your prority is healing yourself.  Instead of hoovering do smile qigong, instead of telly meditate for a bit.  Improve your diet  (high veg content, protein with every meal, low GI, low stimulants (avoid sugars and white bread & caffiene - yah it's a hard one), don't skip meals, try and do more things that cheer you up and inspre your soul (laughing boosts the immune system, so watch more comedies).  Right now your body needs to recover, so don't stand in it's way, help it.  For now, all focus is on your wellbeing.  smile

    • jeanp
      jeanp JennyWren8

      Posted

      Hi Jenny,

      Thanks for this, good information. I have only been ill since January this year so am still learning a lot about CFS/ME.

      Jean

    • MSME
      MSME JennyWren8

      Posted

      Thank you Jenny, This is the best I have seen
  • helen70967
    helen70967 MSME

    Posted

    Hi FibroAng

    I am sorry to hear about your situation. Learning to live with any of this family of illnesses (FMS, CFS, M.E. etc) is frustrating, especially if you were used to being active. Firstly, and I know this is easier said than done, try not to be too disheartened. There is a period of adjustment, certainly, but you can create a life for yourself. Get in contact with your local council, they may be able to offer support (e.g. adapted accomodation). This would save you having to deal with the stairs, freeing up some energy so you can do at least one thing you want to each day. Don't let anyone tell you that it's all in your head. Even the BMA has now admitted that CFS/ME are physical illnesses.

    Remember to love yourself. You are still the same person that you were before. Everyone has limitations, some are a little more obvious than others.

    Please please please ask the council and your GP what organisations are available to help you in your area.

    I hope this has been of some help.

    • MSME
      MSME helen70967

      Posted

      Thank you Helen, I will find out what help to get. Hugs
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