Forum Replies Created
May 22, 2019 at 3:18 pm #178002Reply 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.
Colin42June 27, 2017 at 8:10 am #150373Reply To: I was just
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.
Colin42May 24, 2017 at 7:56 am #149724Reply To: Toileting out and about
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.
Colin42May 19, 2017 at 7:54 am #149673Reply To: I was just
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!
Colin42April 14, 2017 at 4:32 pm #149181Reply 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.
Colin42April 14, 2017 at 4:14 pm #149179Reply 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
Colin42April 29, 2016 at 9:48 am #128225Reply To: Hello from someone in desperation…
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.