I'm so glad I found this forum. I was diagnosed with PMR in February and am still getting used to it. It was interesting to read some of the items on fatigue as this is my main concern at the moment. I look fine and work part time, but the tiredness is really draining and I'm sure people think it's an excuse for doing nothing. It isn't just a matter of feeling tired and yawning, but a feeling that I'd rather die of thirst than have to get out of the chair to get a glass of water. I actually fell asleep mid-conversation the other day - I was mortified.
Should I be exercising? I want to counter the effects of weight gain but the mere thought of anything other than a short walk each day throws me into a bout of apathy. And the short walk is usually a non starter on the days when I have to work.
I can so relate to your vivid description of the deathly fatigue we get. You are covered by the Equalities Act as a disabled person at present. Is there a reasonable adjustment your employer can make to your working pattern, hours, duties etc. that would make it easier for you to do your job?
I have become better at pacing my activities over the months. I rest a lot on the day before I have got something strenuous to do, and I rest afterwards. I am disciplined about taking a nap each day. It is like putting energy in the bank. I try to avoid stressful situations ( and people) I take the line of least resistance. I find slow evening walks do not make me anymore tired and they give me a sense of well being,, and achievement because I have a step counter and I increase my steps. I say no to a lot of social things and things that I don't need to do. I insist on looking after my 2 year old grandson but before he comes I have activities set up around my large kitchen. A happy engaged child is no trouble and the love is good for me. You get my drift, you adjust your life to fit your current energy levels. Thank God it is not forever!!!
PS If you had a step counter I bet you would be surprised at how much you are doing at work.
That's really helpful, thank you. I work for myself so I do manage to choose my hours (more or less), but I hate letting customers down so I just tend to get on with it. Getting some rest in advance is a good idea and I will definitely start planning more intelligently.
I'll only add, the most important thing with PMR is learning to pace yourself, and that's usually the most difficult thing to do. We're all used to just doing things without really thinking about it - well now you have to think. You have to plan ahead, not do half a dozen jobs at once, and get plenty of rest when you can.
The Pred is not curing the PMR, it's only controlling the inflammation caused by it, so you still have a long term, serious illness. You may look good, and feel a lot better than pre diagnosis, but you can't carry on your old life. You will return to it one day, but not yet!
Exercise - gentle - is good, but your muscles are weaker that they were, both through the PMR, and probably the Pred, so need longer to recouperate.
You will get through PMR, but you need to do your bit as well, not just rely on the Pred to make you better.
It's certainly not easy when you're working as well as trying to run a home. I know you don't want to let customers down, but for now you have to put yourself first.
Thank you for the advice. You are right, I have always been stoic through illness and I'm only just realising that I really do have to look after myself and do lots more planning. I think the fact that you don't look ill and people look at you oddly if you say you are, makes you think that, actually, nothing much is wrong.
Stick to the short walk - multiple shorter ones are just as good as one long one and easier to bear for PMR patients. But as SJ says - bet you'd be surprised how much you are doing.
The others have said most things - but here is a link to a set of links that may help you envisage solutions:
I worked freelance - and I know the feeling. But bear in mind, you are only able to produce quality work if you are fit and able. I arranged my work at some funny times that allowed me to go and do an aquafit class every morning - and that made a big difference to how I felt.
Greetings and Welcome maxx57 - thanks for your introduction
I think the others here have answered your main questions about fatigue and exercise with PMR, so I won't duplicate them.
All I can say is: stick close to this forum because it's a goldmine of trusted advice and experience around all things PMR - from the 'Aunties' especially. You'll get to know who they are as you become more involved - I'd better not name them as they watch my silly antics like a bunch of hawks and regularly put me in my place
My role here is as an honorary 'Uncle' (allegedly..), and I'm one of the relatively few men who join this exclusive club that none of Us Lot intended to. I just try to provide some input on the Lighter Side (again, allegedly).
Best wishes and try to keep smiling on the PMR Journey..
I concur with everything that's written. I am tired of people saying I should just work through it, that I will feel better when I get to the gym/go out for a drink/or what ever it is they want me to do when I I am so tired that I just need to go home and sit or as I did yesterday fall asleep for 2 hours....This isn't the old me but it is most definitely the new me with PMR. Listen to your body because its the only one you have. Feel much better today
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