I have an appointment for the Clinic have any of you been to one? Did you find it beneficial. What I find funny is the hour drive each way will tire me. Pauline
No never been to one Pauline… the very idea exhausts me! My physio wants me to try a session at a physio gym… she obviously doesn’t realise that by the time I get dressed, wait for taxi and get to gym, I will have to come straight home. That’s more than I can manage on an average day. Be interesting to hear what the fatigue clinic is like… a room full of people who are desperately wishing they were at home in bed? An hours drive??? Oh the very thought… Good luck with it hon, Pat xx
Hi Pauline, I haven’t been to one either. Be very interested to hear about it though. Like Pat, I think to get up, get dressed then take an hours journey, goodness me I wouldn’t need a clinic I’d need a bed! Good luck with it…I hope you learn something new! Nina x
Good luck, and I’m sure that if it is at all useful we’ll be expecting tips. I’ve always said that I could handle the indignities and inconvenience of being disabled if it wasn’t for the enormous fatigue.
I’m doing a 6 week Fatigue Management course at the moment. It was week 6 yesterday. It’s making us look at our fatigue and score it to see if there’s any trends, then to see what changes we can make to make life easier and more fulfilling. It’s only for an hour and included a 20 minute relaxation period. Apparently when they first started doing it the sessions lasted for 2 hours but everyone fell asleep!!
I don’t know how much I’ll get out of it but it is quite interesting to look at when you’re most fatigued or what activities bring on more fatigue. It’s only a 20 minute drive for me so it’s not too bad!
Sounds interesting. It’s a subject they covered in my ms course but only for an hour. I’d love to hear tips please. I don’t envy you the drive either. It took me nearly as long to get to and from my course and it was on an evening so not great for me as by then I’m tired anyway but I’m glad I persevered as I did learn a lot.
Please let us know what they recommend.
Never heard of it, perhaps its a new thing, sounds interesting and if you are given any tips, please let us all know.
Like everyone else, an hours drive after getting ready, I would need a power nap, if not bed, so I wish you all the best for that.
I have never heard of this either. I feel I just need to listen to my body and rest when it says. I exercise , yoga and aquafit, and I am going to try Pilates to strengthen my core. When I say I do these - in my own way and what I can do and holding onto rail or wall - so a bit restricted. I think you know when you have done enough and need to rest. The only thing is its getting less time doing things and more time resting. I am ok in car. As it is sitting and I fall asleep anyway. But I still need to rest after a journey. But still sounds interesting. Jackie x
I’m certainly going to give it a try and will report back like Cath & Pat did on their recent trials. If it’s like what Dogtanian did it should be useful. It’s not so much the fatigue that engulfs me of late but the increased pain and weakness in my limbs, I won’t take the neuropathic painkillers because they zombify me, just on paracetamol. I work mon-fri mornings 9-12.30 come home clean up, cook the tea then go to bed . I did go swimming once a week but found it completely shattered me, I struggled to drive home afterwards my legs felt so heavy and couldn’t control my foot. I think if I didn’t have to drive myself to places I wouldn’t have to be so concerned. Roll on success with p.i.p application I might afford to take taxis to the pool. Pauline
Hi Pauline, well I think you’re doing extremely well considering pain & weakness etc. Really hope you get the PIP. For pain, try the combo of 1 paracetamol & 1 ibuprofin. This is often the ‘pain relief’ that doctors and nurses use. It’s a good combo… really helps when I have pain. My sister mentioned it to her dentist recently and he said it works even better if you take one half an hour before the other one (doesn’t matter which one as long as there’s a half hour gap)… so might be worth you trying that. Fatigue, weakness & pain… it’s all very hard to cope with so give yourself a pat on the back for getting as much done as you do. Hope you’re having a nice Sunday, Pat xx
Hi Pauline, Please let us know how you got on. I would be grateful for any tips as well. I also take the paracetamol/ibuprofen combo. Seems to work quite well and no noticeable side effects. I try to limit them to the days I work. Didn’t know about the half hour Pat, thanks for the tip. Weakness and fatigue seems to be my main problem. Got myself some weights to see if they will make any difference to my strength. Mags xx
Thanks for your good wishes and advise,unfortunatley i have an adverse affect to ibuprofen & codeine my stomach swells to bursting point and I get the most horrendous pain in my back passage which was discovered during a spell in hospital for an ear op. Hope you guys had a lovely weekend too, the weather here has been brilliant all weekend despite forecasted rain, so the sun was extra special, spent most of the weekend in the garden. Pauline xx
Hi Pauline I’ve been to one and it’s exactly like sarah said,it’s about managing your day and recognising signs of fatigue coming The relaxation at end is funny really do feel sleepy,but I found interesting and do know my limitations better Good luck Steve
I tried to complete a Fatigue diary when I was first diagnosed a few months ago. It started off well but I found that if I didn’t update it every couple of hours I would forget what I had done. The diary didn’t last long
I am now starting to recognise when I need to leave work and go home, have a lie down etc. This makes life much easier to live a ‘normal’ life, especially for my family.
Hi Layla, it does get easier to work out what will exhaust you, what you can handle etc. Almost becomes second nature. I know for instance that if I’m doing something one day, even something quite small, not to plan for anything the next day. I think that works on a pschological basis too because, say if you go out shopping, however tired you are feeling you know that you can rest next day. Much easier for me though as I live on my own and don’t work. I’m very aware of how much harder it is if you work or/and have children at home. Symptom or fatigue diaries are good in the short-term… but beware using them in the long-term. They can add to you sense of how much MS affects your life which isn’t always a good thing. Pat xx
Our homework for this week (3 of 6) from my course involves looking at a typical day and splitting things into the following categories with the examples we were given
Jobs that must be done, (e.g getting washed/dressed)
Jobs that you enjoy doing/want to be able to do (e.g cooking a family meal)
Jobs that could be handed over to someone else (sorting the laundry out/washing the floor)
Jobs that could be eliminated. (I’ll put ironing in this one)
It’s obviously more difficult to hand things over if you live alone. It’s all about making adjustments to make life work for you!
It all sounds so practical and more like common sense until you get home and try to only do the necessary chores, it definitely doesn’t work for me. I’ve accepted that certain chores are now dangerous or impossible like stripping and remaking my bed or hoovering the stairs and employ someone to come in once a week to do that but as you say, when nobody else will do things it’s left to me. Hey ho, such is life, I’m learning to balance my week out to include quiet rest days between outings or appointments and it seems to be working most of the time.
I can no longer do the hoovering (not a bad thing!) and can only do about 20 mins of ironing at a time. I’ve learned that you just need to know your limits and not to push it. I am also very lucky that my partner and son help me a lot, which makes a bog difference.
I think I should check before I post - it meant to say big difference - no more wine for me