Morning everyone, So just wondered how often do you go out, I have SPMS and gradually over the years things have got worse, pain, mobility and the fatigue, the dreaded fatigue is awful and stops me doing so much, so I don’t get out as much as I’d like, I just don’t have the energy and my body in general feels terrible, so just wondered how you go on.
Jean
Hi Jean
About the same as you there seems no point when the fatigue is never ending.
God we sound sad but it’s the truth.
Pam x
Hi Pam, you’re not wrong, I feel like death today, been like this all week, much worse than normal and sadly no infections, so not that. We just have to do what we can and sadly for some of us that’s very little, enjoy your day whatever your doing.
Jean
Hi, read this post before seeing who wrote it…my friend Jean.
Do you know Jean, just lately I am feeling so tired most of the time. My body’s leftways tilt is getting worse and worse.
I keep having to ask to be pushed to the right…apparently I have a slight lean to the left in my spine.
My left hand is very troublesome and wants to make a fist. typing this so hard.
Been to church today…home at 1…bed at 4 but I wish it was now.
Sooo chuffin knackered.If I go out, I pay for it later.
What will help us?
Boudsx
Hi Bouds, Thank you for replying, I’m so sorry to hear about you, we’re both so different now to the time we met in Huddersfield, 14/15yrs ago, I was still walking, wasn’t quite as fatigued, you were on a scooter, but full of live, looked really nice and trendy, I could tell you thought about your appearance, as I did about mine, its sad to read now how things have gone, for both of us, I’m like you, I try and do things and end up really suffering, I have nothing left in the tank, its so hard, not only on me, but my hubby, I hate this condition, as we all do, take care Bouds, stay in touch.
Jean x
I try to do that as often as possible
I don’t go out much. I weigh up whether it’s worth the pain and recovery time. I try to do as much as I can from home so that when I do go out it’s for something I want to do and can’t be done from home. I need at least a week off after going anywhere. I wouldn’t be able to regularly go anywhere because sometimes I need more than a week to recover. I hate it when I have to go somewhere and the doctor/bank/whoever clearly could have done it over the phone but just haven’t bothered making that part of their system.
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Hi NiceCupOfTea, I’m just the same as you, if I do go out the recovery time is about a week to ten days, depending on where and what I’ve been doing, which to be honest isn’t a lot. Its so unfair for all of us who suffer so badly with this condition, take care ,chin up.
Jean x
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Hi, sorry to hear that your fatigue and other issues are causing you so much grief. I too do not get out as much as I’d like, it is such a weird balance between not doing enough (use it or lose it) and doing too much with the consequent impact. I also think that the mental exercise of trying to listen to your body and make the right choices for the day are also draining so sometimes I stop planning and do what the animals do and live in the moment, ie if I feel rough and tired I will stay in bed. Then I get all conscientious and have a huge guilt trip!!!
sometimes we can not win 
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Hi Mogace, Yes I agree, I think we’ll have have these guilt trips of thinking we should do more, but when you feel so bad for doing it and suffer so much you do start to think why bother, but then I kick myself and say “get on with it woman”
Have a good day and just do what you can, my day is shower day, so that’s me done
Jean
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I plan my going outs like a military exercise…but lately have been ambushed a few times with regards to bladder and bowel issues. So taking a step back at the moment
Yes its rubbish isn’t it Rocenante, we have to deal with so much with this condition, would be nice just to go where we want without any thought, buy that ain’t gonna happen.
Jean
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That’s really tough. It is such a knock to the confidence when one’s emergency measures have not been, ahem, quite up to the task. And there’s only so much a person can plan for, isn’t there?
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Afternoon all,
Tbh the incontinence and bladder leakage just puts me off going out or out-out, all of last year and probably for this year too.
I know that’s not optimistic or conducive to wellbeing but it is what it is, for JP.
Hope it’s different for all other MSers,
Best regards.
Well I’m sorry to read this muchthesamemuchness, I too have bladder problems, but for the past 5yrs I’ve been having Botox injected twice a year to help with this, I also self catheter, would this not help your situation ?
Jean
Thank you for the advice @greenhouse 
I’m just a bit wary of botox, as it is a toxin, wysiwyg.
Urinary catheter brings back memory of being in ICU, after hemorrhagic stroke, a few years ago.
I think it maybe a good idea to start wearing TenaMen, if I do step outside, this year.
Best,
JP
Well muchthesamesamemuch I hope you do sort something out for you to get out and enjoy some time away from home, good luck.
Jean
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Since leaving work (2019) I leave home less and less, but…
On the “odd” years I do a 365 art project that requires me to get out and about…
Obviously I’ve just finished last year’s art intervention, and am still enjoying not having to leave home…
The last one was difficult and may’ve to be the last - of it’s kind - as, although my walking pole is now a permanent feature of my life, it doesn’t make walking any easier…
Now, that’s all fine, but now my bicycle….
Jean,
I totally get the feeling of wipeout having a shower causes. I tried to explain this to a friend, but had to agree how daft that sounds. For me the physical effort of maintaining my balance in a warm area is enormous. Sometimes I shower the night before going out the next day because I could not do both things in 1 hit !
M
Mogace, I’m the same, can’t do both, crazy but that’s our life, take care.
Jean
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