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Will this ever end?

Posted , 7 users are following.

julia24924
julia24924

I have been living with CFS and FM for ten years . I believe it happened as a result from having a severe virus in 2008 I have tried to hold on to my full time job and raise my kids. We need to keep our home hence the job. The last two years have been manageable in that my immune system has improved. But I am writing this from my bed nearly able to type because my arms are so sore with fatigue. My kids need dinner, and I have no energy. My husband is away for a few days. I feel so frustrated and upset probably irrationally, but I need someone who has lived with this f*****g disease to say it's okay!!!!

1 like, 12 replies

12 Replies

  • Guest
    Guest julia24924

    Posted

    Julia please believe you are not alone

    I also cannot look after my family although my son is almost 13 and I would say he does more for me than I do for him. I'm a prisoner in my bedroom not even my own home as its a struggle to get out of bed. Its not your fault this illness I so debilitating and destructive. Not only do I have no quality of life neither does my family because of me.

    I feel that no one understands or even believes me (other than this forum).

    Sometimes I wish I had an illness which you either get better through medication or accept your fate. Not what you want to hear I'm sorry.

    you're not alone in how this awful virus affects not only your life but you're loved one too. X

    • julia24924
      julia24924 Guest

      Posted

      Thank you Gaynor,

      I am feeling better now, it comes in waves and it's so unpredictable. Sorry you are going through it too. My 13 year old is so independent because he has had to be. Where are you based? I'm in Ireland. Wishing you a productive day tomorrow. You wouldn't believe it unless you had to live it!!!!

    • Guest
      Guest julia24924

      Posted

      Hi 

      Julia thank you for the kind words of support. I'm in Scotland and have a very supportive doctor. I've been unable to reply until today as it's the 1st since your post that I've managed to lift my head from the pillow. Look after yourself and pray that all ME/CFS will have more understanding and help x

  • Beverley_01
    Beverley_01 julia24924

    Posted

    Hi Julia and Gaynor,

    It is hard when you are a parent too with this condition. I feel extremely guilty that I can't be "mum" alot of the time. I have had some very miserable times with it. Before I got CFS/ME, I was super parent, taking them: here, there and everywhere! I have 4 children and have had CFS/ME since 2012. My eldest had just gone to University and it was such a struggle with the two who were still at home. I have never been a person that asked for help and asking the children for help just felt wrong but, I had to. I had to ask for help to get dressed, shopping, cooking, housework. I felt so disappointed. 

    It is hard to not feel defeated somehow with this condition. You're both definitely not alone just, be kind to yourself on bad days and don't overdo it on good ones.

    Best wishes

    B

    • julia24924
      julia24924 Beverley_01

      Posted

      Than you Beverly. It would help if there was external help from a medical professional. Unfortunately CFS and FM are not taken seriously in Ireland. I was with some friends recently and they sniggered when I mentioned I was feeling fatigue. It is a very isolating illness. I do function quite well 70 percent of the time, but when the fatigue and pain arrive I feel defeated. I just saw this article which looks promising.

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Beverley_01
      Beverley_01 julia24924

      Posted

      Hi Julia,

      Thankyou for your reply, even if it was moderated! You can send me the links via private message if you wish. 

      It is very difficult to convince people that our struggle is real. People were telling me I needed to work when I was saying, seriously I am not well enough. I think in one way things were easier for me because my CFS/ME was from the result of a car crash that fractured my spine so people could see I wasn't ok. I had to wear a back brace for 3 months and so wasn't working. I was exhausted and was being told it was physical and mental reaction to the crash. But the exhaustion never went away. Friends, family and colleagues found it hard to understand and I felt I was constantly having to say the same thing to them. It was 18 months before I asked my doctor could it be CFS/ME. A close friend (one who thought I should go back to work BTW) developed PVS that lead to CFS/ME and had the same symptoms as I did. Doctor was happy to refer me to CFS/ME service which confirmed what I thought.

      It is such a misunderstood condition and what people who don't have it don't realise is that they could get it too or that there is no immunisation to prevent it. 

      There's a film showing in England called unrest this week about CFS ME. Not sure if it's in Ireland too?

      Beverley

    • Beverley_01
      Beverley_01 julia24924

      Posted

      Hi Julia,

      Thankyou for your reply even though the moderator took the links. You can private message them if you wish. 

      It's difficult to get people to understand CFS/ME. There's a film in England at the moment called Unrest. It is by a woman who has CFS/ME and tells her story. Is quite a buzz about it at present.

      Having quite a set of symptoms at the moment so will keep it short.

      Hope you're having an OK time at the moment.

      B 

  • debbie66909
    debbie66909 julia24924

    Posted

    It is ok. You are very sick and you need everyone on board.  Stop the minute you get fatigued, have a back up survival snack food plan, kids will love it- unless they are under 3.  I wish I had someone telling me that - I have had this nightmare of an illness since I got the Epstein Barr Virus in 2001.  I pushed my self almost to death.  Was in ICU on a vent, and lay unconscious for 8 days because the virus took over again last year.  Be kind to yourself you are all have....,
    • julia24924
      julia24924 debbie66909

      Posted

      Thank you Debbie. I have had this since the parvo virus back in 2008. My GP isn't much help and very few doctor's deal with it in this country. Those that do charge extortionate prices for treatment. I have found gluten free diet helps and when I am well I exercise. Therapy and mindfulness too. I was on LDN for about two years, then it wore off but it worked well and helped kick the immune system back for a while. Thanks.

    • julia24924
      julia24924

      Posted

      The food snacks is a great idea. Sorry to hear you had such a bad relapse. Mind your self. I'm coming around a bit this morning, have been in bed since Thursday evening.

  • paublo60120
    paublo60120 julia24924

    Posted

    Hello everyone. I am a male but most of my life I have suffered real heavy consuming depression ever since the age of 13. In my later life I don't feel as depressed but I am extremely fatigued constantly. I can't do anything I don't want to shower I don't want to take care of myself I don't want to eat I don't want to clean I can't take care of my cat. But I don't feel like I'm depressed. I feel like I'm fatigue period constantly just fatigue. Things have gotten so bad lately I don't even want to live anymore. I'm a grown man and all I do is cry because I don't see any relief. It is so bad at all I do is just lay in a bed. I don't know of any other choices. I don't know of any cures... Im about ready to give in... 

    • ME44
      ME44 paublo60120

      Posted

      You might not have cfs and have a way to cure your fatigue. What's your symptoms? 

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