Colin42

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  • #178002
    Reply To: Tips for fatigue

    Yes I agree with you. I have days when I cope very well and others when I am truly so exhausted I just have to stop and rest at regular intervals. I have noticed I get extra tired when I worry about my future with inclusion body myositis especially when I know it is incurable. I am even having to make the effort to go out some days. Today, for example, I noticed that my legs are getting weaker and my ability to walk is very reduced.

    Colin 42

    Colin42

    Colin42
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    #150373
    Reply To: I was just

    Hi Mike

    Thanks for the update. I admire you for having the guts to face the challenge of the classroom andbeing able to make contributions to the session. Please keep us informed about your practical test and good luck.

    Colin42

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    #149724
    Reply To: Toileting out and about

    Hi Sharon

    I can appreciate your problem and agree it is embarrassing and difficult to overcome. I have IBM and it is impossible for me to get up from a standard toilet seat which involves “planning ahead” if going away and hoping there will be “accessible” toilet facilities in towns,restaurants etc.

    I use a raised toilet seat at home and portable supporting rails which I take with me in the car if I go away on holiday, and I take my “Radar” key with me as well so I can use “accessible toilets” in towns etc. Hope this helps.

    Best wishes

    Colin42

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    #149673
    Reply To: I was just

    Hi Mike

    Thanks for the posting. You raise an excellent point that we should not let MD grind us down. I do my best to remain positive but I do crack occasionally and have a “Why me?” moment which usually ends up with a fight with my “black dog”, otherwise known as depression. I have deteriorated quite quickly lately and now , like you, I need to have someone with me when I go out. My struggle is that I love going out but it is the hassle of transport and will I be able to sit down, stand up, toilet etc etc etc.?

    I do my exercises most days and also enjoy watercolour painting, playing my keyboard to keep the fingers going and then I take time out to do my form of self hypnosis which I have learned to do over the years. I also do my best to have at least one “laugh a day” which I find helps.

    Best wishes and keep fighting!

    Colin42

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    #149186
    Reply To: Fear of Falling and depression

    Will do Mike. Thanks

    Colin42

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    #149181
    Reply To: Fear of Falling and depression

    Thanks for your message Taungfox. I was using the Rollator but, as per previous messages, I was tired and the kerb appeared suddenly. It has taken this fall to realise how weak my legs were getting. I will check all options now and move on.

    Thanks again.

    Colin42

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    #149180
    Reply To: Fear of Falling and depression

    Thanks Mike for your reply. It was a piece of kerbing and I was tired. So silly I know but I am doing the exercises and am determined to move on..

    Many thanks.

    Colin42

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    #149179
    Reply To: Fear of Falling and depression

    Thank you for your kind reply Cat. On looking back I was tired but I felt that I needed to keep going and so went for a walk using the Rollator . I had been feeling really well and I suppose I was caught off guard. I forgot I dont do kerbs and fell backwards. I have re-run that fall so many times which I now realise was a form of self punishment.

    Thank you for your advice

    Colin42

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    #133647
    Reply To: Inclusion Body Myositis

    Thanks for your advice

    Colin42

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    #128225
    Reply To: Hello from someone in desperation…

    Hi

    I had 3 years of doctors trying to diagnose my symptoms which were similar to yours but have seen both Rheumatology and EMG departments and at last got my IBM diagnosis. My GP does not know anything about treatment but I have been to our “Falls Clinic” and I have a set of strengthening exercises which seems to be helping.

    Hope you get sorted soon. It is very upsetting being disbelieved and ignored and you will need to be assertive. You are the one suffering, not your Doctor.

    Colin42

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