Hiya
I was trying to explain MS fatigue to different people when I applying for medical early retirement .I wrote 1 to 10 and beside each number I wrote how the level of fatigue was effecting my MS eg by 3 my left foot would have tinkling, by 5 my foot would be numb and balance starting to be effected,… 10 was when I couldnt take another step just had to sit and be pushed in a wheelchair.
I then wrote a daily diary outlining my basic activities and the fatigue level in numbers.This illustrated very obviously how the MS fatigue effected me which is hard to verbalise. Every day people with MS know they have to avoid getting to 10 they have to restrict and monitor what they can achieve each day which is a silent symptom assosiated with ms fatigue which is frustrating and limiting.
An example would be going shopping with a friend. You may feel a 1 when you start but could get to7 or 8 if you dont use disabled parking or need to climb stairs or dont organise a mobility scooter or walk with stick and visit more than 4 shops.Also need to think about activites before and after the shopping - no cooking dinner after so need to put in slow cooker first, rest before you go…All this depends what your symptoms are.
Perhaps activity could be give photocopy of fatigue numbers 1-10 with the possible MS related symptoms. Activity is to match numbers to shopping trip with different limits eg no disabled parking, baskets not trolley, no help packing or to car, large supermarket when dont know lay out, stop and chat to friend for 20 mins, no seats to rest,… Something like that anyway.
good luck.
I think the weights on one side and sand in the welly on the same side is a good idea. My left side is my weak side. I walk and it soon becomes heavy abs feels very odd too. I then start slapping my foot a little not a lot but it happens. Not sure how you can demonstrate that. The sensations in both my hands I describe as pins and needles. Only way to show this is by sitting on hands or legs till they go dead. Another symptom I’ve and many others will have had a is the m.s hug. This feels like someone sat on your chest … not sure how you can do this other than strapping something heavy to someone’s chest or putting a belt round and fastening it tight so it’s very uncomfortable. Id love to see this demonstration… could do with awareness days running locally x
Another symptom I’ve and many others will have had a is the m.s hug. This feels like someone sat on your chest … not sure how you can do this other than strapping something heavy to someone’s chest or putting a belt round and fastening it tight so it’s very uncomfortable.
I so agree with this one of my worst symptoms and sometimes it gets so bad I have to lie down and try not to panic, the only way to ‘act out’ this symptom would be to burn their back and chest simultaneously and of course that would definitely not do, your belt tightening example is a lot better, Wendy x
What about wearing a diving flipper on the weaker side too with the heavy weights on so you can show a bit of foot drop too - I’m always tripping over mine!
Hiya guys
Thanks for the all the suggestions! I’ve thought now I will do the glasses with vaseline and ask get a guinea pig (metaphorically speaking) to walk around with sand in their wellies then ask them to narrate how they felt. I would also mention the hangover and flu example too.
Thanks again!
Zak
Hope it goes well!!! Let us know what happens!
Kate x
Just for a bit of balance (no pun intended), do make sure your presentation doesn’t suggest everyone with MS has all of this, all the time!
It’s great to promote wider understanding of the sort problems we may have. Not so great if the audience goes away thinking it’s the same in all cases - for example that everyone will need a wheelchair!
Tina
Try walking in water with weights strapped round your legs when your really tired and feel youcan do no more!
My legs often feel like I’m wading through mud or custard. Now that could be fun while at the same time getting the message across!
Tracey x
When fatigue hits me it is like having the ‘plug’ pulled out if you were running on electricity. Everything ceases to a halt.
Now the majority of us are ‘doubly incontinent’. Would like to know how you demonstrate this. As this problem is the worst part of MS.
@Spacejacket
Really? What is your source for the majority of us being doubly incontinent? I’m not sure that is factually correct.
Tina
You are very fortunate if your ms has not caused bowel/bladder problems. Mine started 31yrs ago. l must have read hundreds of posts on here from very embarrassed people whose lives have also been blighted by this problem. MS does some awful things to our muscles. And bladder/bowels are all controlled by muscles that spasm or are effected by spasticity.For many they can’t go when they want to - or they can’t stop going. lts depressing and demoralising especially when your legs won’t get you to the loo in time. Everyone l know personally with MS - have this problem in varying degrees. This problem also causes UTI’s which can make you seriously ill. lf it wasn’t for this condition damaging our bladder/bowel control - l think many of us could have been fortunate enough to continue working. lt certainly makes travelling/waiting at bus stops etc/ and socialising very difficult.
I’m not disputing that it can and does happen, nor diminishing the serious of it - just questioning your assertion that the majority of people with MS are doubly incontinent!
I don’t believe that is true, and if it is, I’d like to see reliable statistics, and not just what you’ve read on forums (which are not a random cross-section), or anecdotes about people you know.
As the original post was from someone wanting to educate the wider public about MS, I wouldn’t want their audience to go away with the impression MOST people with MS are doubly incontinent - even though some are. It’s already bad enough that we’ve got the popular misconceptions that MOST people need a wheelchair, and MOST will die of it! I think the huge variation in possible effects, and that it’s unique to the individual, is an important thing to get across. Not a stereotype of what “most people with MS” are like. I reckon you’d be hard-pressed to find two people here with the exact same catalogue of symptoms.
Tina
Trying to write with hand that is not lead hand as lead hand no longer works