1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Care needs

Posted , 4 users are following.

helen70967
helen70967

Hi all.

My story is probably similar to most of yours. I contracted viral meningitus aged 12 and since then have been diagnosed with numerous medical conditions all of which still stand (Hypermobility disorder, IBS, PCOS, Fibromyalgea, CFS and Coeliacs) and am now being investigated for neurological M.E.

I was told when initially diagnosed with each condition that I would get well again. As you can imagine this has not happened. I have done everything I was told to and found my own route through various symptoms.

I had to leave my husband because he was abusive and my current partner recently left me because he couldn't cope with the amount of care I now need.

Although I stay positive and as independant as possible it has become increasingly difficult to take care of myself and my home. I am hoping that someone knows how I can get help with this either at home or how I can move into assisted living.

As I am only 29 I am struggling with the reality that I have limited freedom and need care. Does anyone have any suggestions as to how to move forward.

0 likes, 8 replies

8 Replies

  • JulieBadger
    JulieBadger helen70967

    Posted

    Hi Helen,  sorry to hear life is throwing you some rough cards.  Well done for standing up for yourself re your ex husband.  It's a shame your current partner couldn't handle the pressure of being your support.  It's not easy being a support for people like us who have a disability, it needs true love or pay.  There is the PIP allowance, although exactly how far that money could stretch to pay for all you need is questionable.  It also takes months to wait for the assessment (personal experience 6 months so far since paperwork completed and still waiting).  I think one of the key things is bringing your expectations and needs down to a level you can achieve as much on your own.  That's making your main the middle of the day cos if anything like me I'm too tired to cook and eat on an evening.  Accepting you're not going to have the cleanist house cos you can't frequently clean it.  Working out what must be done / what needs to be done / what you would like to do and portioning that out over the whole week.  Basically adapting your whole life set-up around your capabilities. 

    I totally understand as I am only 36 and struggle all the time with my limitations.  Unfortunately it means I'm still getting worse sad However, my heart goes out to you without support. I have my loving husband, 2 young kids and a supportive Mother-in-law.  Without them I wouldn't be able to achieve what I do. God bless themx

  • helen70967
    helen70967

    Posted

    Hi Julie

    Thank you for your kind words. I will bare all that in mind. I'm glad to hear that you have a good support network and I hope you stabalise soon. xx

  • sunshinemb
    sunshinemb helen70967

    Posted

    Hi Helen

    I can fully understand your problems as I too had a very abusive husband and had to leave!  I am so sorry that you have all these medical problems at such a young age, but you are very brave, remember that!

    I don't know what part of the country you live but there should be a telephone number for your local Adult Social Services which if you have this in your area, you can ask for an Occupational Therapy Assessment.

    They will send someone to assess your needs in terms of more suitable assisted living and other support.  I would imagine it varies in different areas on how you access this service, but you may get some information from your GP Surgery in the first instance.

    You can also find various housing associations with websites who have suitable accommodation for people with complex medical needs.  They usually want letters from GP and Specialists!

    I am on a waiting list to move into more sheltered accommodation at the moment because I cannot manage in the home I am in at the moment but I am 58!

    Try and look at the situation as a long term strategy, taking it step by step, and

    ask as many questions as possible because when you do move you want it to be the right one for you?!

    I hope this helpssmile?!

  • helen70967
    helen70967

    Posted

    Thank you sunshinemb. That is very helpful. I do hope everything goes well with your move.
  • helen70967
    helen70967

    Posted

    Thank you both for your responses.

    I have now contacted the local Adult services and they are going to come and assess my care needs.

    Thank you again. I really didn't know where to start.

    Helen

    xxx

    • sunshinemb
      sunshinemb helen70967

      Posted

      Hi Helen

      That is great news and so glad for you and I do hope you get some much needed help!

      If you start writing down notes of the things that are giving you the biggest problems and let the OT have a read of your notes, it will take quite a bit of stress off you when you meet this person as it is easy to forget.

      If you have any letters from hospital specialist or GPs it is easier for them to read the stuff than you exhausting yourself trying to explain?

      It helped me because I could not remember everything and made notes as I remembered stuff...e.g.not able to get dressed or get out of bed everyday, not able to cook meals regularly, not being able to bathe everyday, falling out of the bath, not being able to get out the bath, tripping on the landing, falling down the stairs, unable to climb stairs etc, etc.

      Mobility issues...not being able to get out the house, leading to isolation, 

      and depression?

      I did find it difficult to write these notes because I had to come to terms with the fact that I had serious health problems and especially when you know you have done your very best to try and look after yourself on your own with very little help!

      The letter that you will receive after your assessment can be used to accompany housing applications which will give you a priority due to your health problems.

      I am really glad that you are going to get some help, will keep my fingers crossed that all goes well for yousmile

    • helen70967
      helen70967 sunshinemb

      Posted

      Hi sunshinemb

      I appologise for taking so long to respond. I haven't been doing too well of late. Thank you for your support. Although I am still waiting for an assessment I am amazed at how my friends have rallyed around me.

      I hope this has found you as well as possible Lol.

      Thank you again.

      Helen

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.