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Fibromyalgia, chronic fatigue syndrome - help with meal prep, personal care, aids for the house

June63June63 Member Posts: 1 Listener
I have fybromyalga and chronic fatigue syndrome.  I am mostly house bound as I cannot go out on my own. My partner and youngest son live with me but they are both at work during the day. To be honest I am not coping very well and my doctor informed me that the only support available was in Aylesbury.  As I live in Milton Keynes it is not an option. Does anyone know if I can get help with meal prep, personal care etc also any aids that can help me around the house. 

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Just saying 'hello' June @June63, and a warm welcome to the community. I'm not enough of an authority to be able to answer your specific questions, but I am sure there will be others along who can offer you more help and advice.
    You have found a safe place here and are among friends, so please don't be shy of telling us about yourself or of asking any questions. The better we get to know each other, the easier we may find ways to be of use to you.
    Warmest best wishes to you,
    Richard

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi @June63

    If you need support and advice with trying to sort out social care at home to assist with some of those tasks you are struggling with I would suggest that you make contact with Milton Keynes Centre for Integrated Living

    http://mkcil.org.uk/

    Best Wishes


    Jean


    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • MKMaleMKMale Member Posts: 24 Courageous
    Hello @Juhe63,
    I'm also in Milton Keynes and have Fibromyalgia and CFS/ME.
    I agree with @Jean_Scope about contacting  http://mkcil.org.uk they have helped me a few times and I can happily recommend them to everyone.
    May I ask if you have had any assessment to establish what your needs are and what help may be available for you. I contacted the Community Occupational Therapy Services. I have had my bathroom converted to a shower after their assessment.
    You can also be referred and or refer yourself for assessment by condaccont the Milton Keynes adult social care team for assessment.
    Also contact Milton Keynes Age UK, they have helped me with a cleaner (there is a small charge) but I find it is worth it. I also know that there is a meals on wheels service in Milton Keynes (again for a small charge) .. 
    Feel free to contact me if I can help at all.
    Hoping today finds you a little better than yesterday.
    Blessings Be
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Hiya I got a lot of AIDS through O.t.c they were very good and efficient .i have  perching stool bathroom showe board and some other stuff .you can get an appointment through your local council.i also contacted social services who did a care plan for me.pricey but there as an option .red cross can be helpful too .good luck with everything
  • impeyimpey Member Posts: 4 Listener
    Hi @June63
    I've only just joined, and read your post from February so I may be too late to give any advice if it's available in your area.
    I also suffer from Fibro and CFS.
    I live in Staffordshire so not sure if your local authority would do the same, but I had an assessment from the Socail Care Team and I get Direct Payments to help me pay for a PA, I also pay a little towards her too. She helps with all my personal care and preparing meals, taking me out for a coffee or wheeling me around the town in my wheelchair. She is not meant to do shopping or housework but that's something you can organise between yourselves.
    I really do not know what I would do without her. There is some paperwork involved but the ROWAN ORGANISATION do the paperwork and sort out the PAs wages etc.
    It's worth looking into as your local social care team may do something similar.
    😘
  • aashworth81aashworth81 Member Posts: 11 Listener
    Hi June63, I had M.E. as a teenager and managed to recover when I was 19. All I can suggest is a variety of techniques that helped me get better. Having a structured programme of activities and resting in between. You may decide to do 15 minutes on a jigsaw, rest. 15 minutes painting by numbers. I also stepped up my walking monthly by walking that little bit further outside my parent's house each month. Another tip is osteopathy. You may feel worse for the first few sessions but after a couple of weeks or so it will help you. It will drain the lymphatic system and the toxins in your body. Hope this helps, Alex.
  • NancyRNancyR Member Posts: 2 Listener
    June63 said:
    I have fybromyalga and chronic fatigue syndrome.  I am mostly house bound as I cannot go out on my own. My partner and youngest son live with me but they are both at work during the day. To be honest I am not coping very well and my doctor informed me that the only support available was in Aylesbury.  As I live in Milton Keynes it is not an option. Does anyone know if I can get help with meal prep, personal care etc also any aids that can help me around the house. 

  • NancyRNancyR Member Posts: 2 Listener
    Hi, I live in Scotland so I'm not sure if it's the same where you are but ask your dr to refer you to occupational health for aids around the house and possibly a wheelchair that would make your life easier. Also your GP can refer you to a social worker who can help organise with meal prep maybe and help around the home if you qualify. Do you have pip? I don't see any reason why you wouldn't qualify. I'm only new on this site and I've already gained lots info.
    So get that drs app and get your help! 😀 Xx
  • Jean_OTJean_OT Member Posts: 532 Pioneering
     I'm not sure if it's the same where you are but ask your dr to refer you to occupational health 
    Sorry to correct you but the referral needs to be to a Community Occupational Therapist (OT) / The Community Occupational Therapy Team NOT to Occupational Health.......Occupational Health is a profession concerned with employment issues.

    Whereas, OT's are registered professional educated to at least degree level to assist people to overcome barriers to being able to do the things they want or need to do by adapting the task, adapting the environment or re/skilling the individual. OT's work in many different settings including statutory organisations (NHS, Social Services, Education), charities and community organisations and in independent practice. Different settings will have different remits but certainly I would expect the Community OT to be able to advise and support June63 with resolving some of the issues with activities of daily living, assuming that she meets their criteria for service provision. 

    Best Wishes
    Jean 

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • hasshass Member Posts: 90 Connected

    Hi June 
    I'm sorry to hear about your health problems.
    I have MS and chronic fatigue  syndrome. amongst other problems.
    I got my GP to refer me to an OT  who visited me at home and had aids  that help me shower ,  i have a bench  that fits across the bath so i can  sit and shower, a bath seat so i can have a bath , a catcher  to pick things up from the floor a chair where i  can sit on to  do take washing out .  a raised toilet seat 
    and a bed  lever to get out of beds.
    The flat that i moved into already has
       hand rails in the hallway and handrails in the bath 
    I pay for a private cleaner as i  can't  stand for  long periods.
    I hope that some help
    Good luck
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Sorry to butt in but I am very interested to know how you get diagnosed with chronic fatigue and fibro? I’ve recently been diagnosed with fibro and I don’t know anything about chronic fatigue apart from being fatigued all the time is one symptom of fibro. My g p diagnosed me and there has been no follow up. I am going next week to discuss my fibro and would like to know what questions should I be asking and what help I should be asking for. I have similar issues with the original poster.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • hasshass Member Posts: 90 Connected

    Hi i don't have   fibromyalgia,  its MS , with MS you do have extreme   fatigue.

    amongst other   symptoms

    only a neurologist  can diagnose   MS 

    http://www.fmauk.org/2-uncategorised/52-what-is-fibromyalgia

    good luck



  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Thanks 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
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