Hi all,
I wonder if I could have the benefit of your experience please.
I’m a couple of months post diagnosis now. I am trying to do more on good days and rest on bad days. I do think I am spending too much time in bed, but when I get up and move around my neuropathic symptoms and fatigue become overwhelming.
How do you deal with this. If I push through it just takes me longer to recuperate.
The amount of rest seems disproportionate to the activity.
Is this the same for you ? How do you balance it ?
I would really appreciate any advice or suggestions please.
Thanks, Janet xx
Hi
for me it’s about not doing to much even though I might feel like it because the after effects will be bad news. I work on a 10-15 minute basis. I set a timer on my phone and I have disciplined myself to stop after that very short time and take a rest. Play on my iPad, have a cup of tea, do a bit of embroidery. Perhaps then I can do 15 more minutes.
The desire to just do a bit more until you are finished can be overwhelming but I will end up exhausted and wiped out.
I make a meal for me and my mum in stages. It takes forever but I don’t feel like a dead duck afterwards.
Your dx is new so the memory of what you used to be able to do will be very clear and will make you frustrated. I’ve been at this two decades now so it’s my reality and I don’t rail against it. To find your optimum time keep note of how long it takes you to feel tired when you are doing things. Once you have a number start forcing yourself to stop even though at that moment you might feel able to continue.
I was describing this system to a friend (who also has MS) and she was horrified at the idea of stopping half way through mowing the lawn, for example. I’d rather do half a job today and half tomorrow, it will get done and I will still feel human.
Jane
As Jane says, it’s a matter of doing things in tiny doses, don’t try to do too much in one go. I break things down into small jobs rather than time limits so I’ll do a part of a job today, then some more tomorrow. Fatigue management becomes second nature after several years of living with MS. I tend to only go out every other day, so yesterday I visited friends for a couple of hours, today I’ll stay in. I also make sure that I rest properly every afternoon. I go and lay on the bed. Most days I read on the bed, but on bad days I draw the blinds, get under the covers and sleep for a couple of hours. Try not to feel bad about resting, I think it’s drummed into us to keep busy and to do things quickly; learning to slow down is part of living with MS.
Have you tried any drugs to help with fatigue? For example Amantadine or Modafinil (if you can get it prescribed, it seems that some people have had trouble getting it just lately). Also, some of the drugs people take for neuropathic symptoms can have fatigue as a side effect, so check what you are already taking, if your fatigue is worse because of a drug, you may be able to switch to something else?
Sue
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Thank you both, basically the same message from both when it comes to doing things. I still find sitting in the lounge /making a cuppa or chatting an effort most days.
I’ve been on gabapentin for about 3 weeks and gradually increasing the dose. Amantadine just sent me to sleep so thats a no go. Will see if i can get modafinal when ms nurse and neuro back from hols.
I haven’t woken up much today.
l have just come indoors for a cuppa and a rest. l have been cleaning weeds out of the brick paths. And l have swept up and also sprayed weeds l cannot shift with weed-killer. Just got to a point when l could hardly hold myself up with my rollator - and l know that l have over done it and should have a break. And l was thinking to myself - ‘‘it must take me 4 weeks - now - to do what l could do in a day’’.
l have always been a strong hard-working girl - but not now. l have had PPMS for 33yrs - and l have always pushed myself hard to keep going. Never stay in bed - well l can’t sleep - only manage 3-4 hrs a night.
My rollator has become my right-hand. What would l do without it. l have one that is suitable for outdoor - rough ground - and it is the best thing l ever bought. Gloves/secateurs/ watering can etc all in the carrier part - and a seat for when l need it.
l have been on the Biotin treatment for about 7 weeks - and it certainly has given me more energy - but l wear myself out even more because l feel like attempting tasks l would have not thought of doing before.
Where’s that cuppa!!
I’m just doing a short shift on reception (we run our own dog boarding business)
Hopefully it will mostly involve sitting down and answering the phone 
I’m tired just reading what you’ve been doing spacejacket ! I’ve been reading up about biotin - think I’l give it a try.
I was busy with the business before this relapse happened at the end of May. I used to do 12 hour days 7 days a week, I know it’s early days but still haven’t cooked a meal, driven my car or ridden my horses. Or even been out into the field to see them ! I’m trying to keep my impatience at bay.
My lovely husband has been a trooper looking after me though. He hates what’s happened but we have even had a couple of dates for lunch, cinema, drinks. That has been brilliant because it’s made us take time out together. Every cloud and all that.
Janet x
Hi Janet
Very good replies by Jane, Sue and Fran.
I am exactly the same. Was diagnosed 11 years ago and I get exactly the same after about 10 minutes doing things on my good days which leave me unable to walk as my legs are so heavy. It’s very frustrating because I could be anywhere when this happens. My lovely hubby was out shopping with me and after 10 minutes my legs just wouldn’t move and he guided me slowly back to the car. We drove home and I was fit for nothing for the rest of the day.
I am sure you will find what works for you to get the best out of life for you and your hubby.
Take care.
Shazzie xx
Thanks Shazzie
I guess we just have to make the best of what we do have and not dwell on the crappy bits.
Easy to say isn’t it
My plan today is to get ready to spend the afternoon with my sister. Best crack on I suppose. Shower and rest !!
Take care and thank you
Janet xx
Hi, yeh you got it right ie rest and play with at least 1 day in between.
I used to spend a lot of time in bed and it can be demoralising. So I got an electric riser recliner chair in our lounge. I can rest all day, without being in bed. I recommend it.
Pollx
Hi, yeh you got it right ie rest and play with at least 1 day in between.
I used to spend a lot of time in bed and it can be demoralising. So I got an electric riser recliner chair in our lounge. I can rest all day, without being in bed. I recommend it.
Pollx