Neurological conditions
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Chronic fatigue Syndrome

Daisy76Daisy76 Member Posts: 8 Connected
edited July 2018 in Neurological conditions
I had a relapse at the end of March it's all been very stressful.  I am finding it hard to accept the new me, I've been here before but it doesn't get easier.  I've had to get a wheelchair to go out in which isn't very often, it's hard to accept that.  My routine is very limited and I have a lot of thinking time.  I started having coaching sessions and it became too overwhelming so I had to stop.  I've just sorted out a cleaner and family members are doing the washing and ironing.  I don't like being housebound spending hours on my own.  I was a very independent person and worked hard.  I've done too much some days out of frustration.  My husband has health problems but is managing to work, he tries to understand about me but is equally frustrated. I've had help from two different clinics and I am getting Pip.  What help/support have other people found useful.

Replies

  • SunshineLouSunshineLou Member Posts: 93 Pioneering
    @Daisy76 sorry to hear you’re struggling. I know exactly how you feel about all of that!
    I was super independent for years. 
    Single Mum with two boys and my youngest with severe autism. 
    Then I was struck down with ADEM and now rely on others for almost everything.
    I have a wheelchair and stairlift etc etc.... my husband left me despite marrying me after my illness in 2014. He couldn’t deal with my limitations either :( 

    I’ve found that online groups like this and on Facebook have been a Godsend. Connecting with people who know how you feel is invaluable psychologically. 
    I have many residual effects from the lesions in my brain and spinal cord and one of them is extreme chronic fatigue.
    It makes life even harder feeling constantly shattered.
    I also have Neurofatigue which again makes it all more difficult. I can’t even think or speak some days :( 

    You’re not alone in all this!

    Maybe try to reach out to some CFS groups online? 
    You can send me a PM if you’d like to x x 
  • Daisy76Daisy76 Member Posts: 8 Connected
    Thanks for the reply, it would be lovely to keep in touch not sure how I PM you, me and technology! Your situation also sounds very hard, I often do feel very alone, I guess you do to, I am glad you have your two boys xx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Daisy76 and a warm welcome to the community! It is great to have you here! I am sorry to hear that you are struggling at the moment. I hope the community is able to provide some advice :)
    If you need anything then please let me know!
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  • Daisy76Daisy76 Member Posts: 8 Connected
    Thanks Chloe, I think it would be useful to know how others manage and the support/help they get when housebund with Chronic fatigue.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @Daisy76, lovely to meet you! I have ME/CFS myself and can relate to many of the experiences you've described. Do you mind me asking where you're based? 
  • Daisy76Daisy76 Member Posts: 8 Connected
    Hi @Pippa_Scope lovely to hear from you. I am based in Bedford.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi again @Daisy76, I'm guessing you've already been seen by the Bedford CFSME clinic? I do know of a support group in the area you might be interested in, here's their website.

    Action For M.E also have lots of great support lines, including welfare advice, so if there's anything specific you're looking for advice on, they may be worth talking to. Otherwise, do feel free to get involved with the community and we'll advise where we can- I know it can feel like such an isolating experience, but we're all here to support you! 
  • Daisy76Daisy76 Member Posts: 8 Connected
    Hi @Pippa_Scope, yes I've been seen by the Bedfordshire Cfs service.  Thanks for the other information and your support.  I only came across Scope because a lady knocked at my door on Monday I was having a rest but so glad I answered the door we had a lovely chat.
  • Daisy76Daisy76 Member Posts: 8 Connected
    @Pippa_Scope and @Chloe_Scope just a quick question, I am currently borrowing a wheelchair from the red cross, I might need to purchase my own, very long wait for OT to assess me.  Where should I get one from? thanks
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Daisy76, it's great to hear from you again :)
    I can definitely relate to having the wait to see wheelchair services. The other alternative is to privately buy one that suits your needs. The world of wheelchairs is far greater then I expected when I bought mine! I know it is possible to have a payment plan so you pay a bit every month rather than having to pay for it in one go. Also, if you choose a place with a showroom then you can try the chair out beforehand. I also know that charities can do grants for wheelchairs. But these are often very area specific. I will have a look though :)
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  • SunshineLouSunshineLou Member Posts: 93 Pioneering
    Hi @Daisy76 I bought mine online before I was discharged from hospital. 
    I was advised to borrow one from the Red Cross also but I knew I’d need it long term.
    I’ll find the link to the site I used and add it here in a minute. 
    I’ve got a G-Lite Pro, it’s light and fits through regular size doorways. It’s foldable and has quick release wheels for easy loading into even small cars. It’s a great model x
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Thanks for sharing @SunshineLou :)
    Why don't you start a new discussion about wheelchairs @Daisy76? You could say what you would needed and I am sure the community would share their models with you :)
    I have the Quickie Xenon. They no longer make this model but I love it because it can be folded down small
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  • Daisy76Daisy76 Member Posts: 8 Connected
    Thank you everyone for your replies x
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