Hello my name is lulumae, and i know that fatigue and confusion are really regular symptoms but how does everyone else cope and how do you make others understand? I am really struggling at the moment. any help would be really welcome thank you x
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Hi Lulumae,
As for coping, I will let you know if I crack it. So far my progress involves pacing myself and prioritising energy usage and not being too hard on myself or judgmental when I canāt do stuff.
Making others understand in my experience can be tough. Fatigue is so far out of the experience of those who do not have it, sometimes I needed to be brutally blunt and use very strong language ! If you can build a library of examples: E.G " like wading through treacle / try strapping bags of sugar to your arms and small bags of concrete to your feet while trying to recite a long lost poem even when your mouth is full of blotting paper. "
Examples need to be a bit silly or extreme to have a hope of getting past someoneās automatic response. With my family, I have agreed to use specific terms to let them know that I am struggling to keep my head on my neck rather than just very tired.
Wishing you the best of luck
Mick
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For the fatigue, you just have to learn how to pace yourself and get rid of unnecessary movements. Combine trips every chance you get, and take as many shortcuts as possible.
I rarely cook any more and rely heavily on microwaveable meals. Theyāre not very good, but theyāre easy and take little effort. Iāve learned to drink cold coffee and just make a really giant cup of it when I pass through the kitchen on my way to the bathroom. I make no special trips through the house; every one of them combines a couple things.
My house could be cleaner than I keep it, but that would require me to spend 2 out of 3 days in bed and in pain. Itās not worth it to me. I dust the shelves around the front door when Iām standing there watching the dog do his business outside. The shelves at the other end tend to wait until theyāre ready to plant potatoes.
My family has learned that if they want me to go shopping with them, we have to limit ourselves to one or two small shops and one of them has to do the driving. I rarely visit my mother during the summer months, because her house is much too hot, so she comes to mine. When I do go there, I stay outside to catch every passing breeze.
For confusion, I rely heavily on sticky notes, preferably written when Iām clear-headed. I have instructions on how to work the oven, the washing machine, the coffee maker, all posted near those items. I keep samples of cancelled checks and step-by-step instructions to access my online bank account.
I no longer bother to get embarrassed when I canāt remember a word; I just describe it. āI saw a really pretty blue one of those animals that flies through the air.ā āA piece fell off that big wooden thing in the front yard that has leaves.ā My familyās gotten used to it, and they generally fill in the missing words for me.
There are times Iāve had to ask my resident son for help with simple tasks. Heāll be like āMum, really?ā and I remind him that I canāt think straight right now and am confused. Depending on the situation, he either guides me through it or just takes over. When I still lived alone, there were times Iād call him to say that I was going to take a shower and would check in when I was done. If he didnāt hear from me in an hour, he was to come looking.
This is not something that you should really be dealing with alone. Hopefully you have housemates or close friends who can help you navigate the changes to your life.
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get a T SHIRT printed.
You dont cope with MS Fatigue you just have to survive it lol. My sister will say to me, oh yes i get fatigue or oh yes i get tired, it comes with age, so i say to her well sorry it must be hard for you being six years older then me lol.
I gave up trying to explain it as its too tiring lol.
I have learnt to pace pace pace. I can afford a cleaner so i have one who comes 3 times a week and she also helps me with other things. However, i will set myself little tasks. Like the other day i just tidied my underwear drawer (really do i need that many knickers lol), and it wiped me out.
I like the analogy of concret @Mogace i agree. I know i am half italian and for me the Mafia have encased my legs in concrete lol. which over time has turned my left leg totally weak and useless so i cant even lift it up and the foot has no perception where the ground is, so my right side works twice as hard to keep me going forward. Just a tiny walk outside on my little patch of grass feels liike i have run a marathon lol, pushing my rollator is a gym workout lol.
I just gave up trying to get family to understand whats the point they dont.
Confusion oh that one oh yeh we all get confused when we get old. Shame i am not young then, they couldnt use that one could they lol.
dont be so hard on yourself thats the first thing be kind to yourself.dont try to prove to others your strong, if you are tired rest. work out what you can do, what you cant do, what is important and what isnt. dust comes back the next minute, and the most important thing to worry about is eating and drinking and trying to stay a little mobile.
OH YES i cut out all the DOOM AND GLOOM from my life. it is so much nicer lol. xx love your name. xx
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Hello Lulumae
Welcome to the forum. The other posters have made very valuable and creative points - I couldnāt agree more.
All I can add are some links to webpages from the MS Trust. The first is about fatigue: Fatigue | MS Trust What is most important is managing your fatigue. Try not to do too much at once, break jobs up into small tasks. Like Norasmum and dusting a section of shelf while sheās there. Or @Crazy_Chick and her knicker drawer!! Iāll clean the sink and then stop. Once Iād have cleaned the whole kitchen, then moved on to the living room. Fatigue is too great a burden to worry overmuch about a clean house!
My second link is about cognition: Thinking and memory problems | MS Trust Youāll notice that being fatigued is one of the reasons for losing ones way in the cog fog.
I like @Norasmums ā I no longer bother to get embarrassed when I canāt remember a word; I just describe it. āI saw a really pretty blue one of those animals that flies through the air.ā āA piece fell off that big wooden thing in the front yard that has leaves.ā My familyās gotten used to it, and they generally fill in the missing words for me.ā
Yesterday my husband (without MS described a baking tray as a ārack thing that goes in the ovenā. I understood what he meant, I can rarely remember what a baking tray is called. I often point at whatever Iām trying to talk about āyou know, the thing, over thereā!
Using notes, a calendar, diary, post its, just anything thatās an aide memoire. If you have a smart phone or a tablet, often there are apps that help. Iāve been keeping a diary on my iPad and phone for 10 years. Itās utterly essential to my life now.
Good luck
Sue
LOL, i remember the thingyme bobs and doo dahs very well when mike was alive it didnt take us long to develop our own language lol.
you got a laugh havent you.
and for those of us old enough a classic song from the great Bonzo Dog (Doo Dah) Band - I'm The Urban Spaceman - YouTube (Bonzo dog doo dah band)
I soooo relate to everything you all have been talking about, especially Cognitive Functionā¦Describing things!!.. I was in Morrisonās cafe the other day, first thing in the morning cause my daughter was having a covid testā¦why is this relevant??? Cause Iām not usually up and about that early for breakfast. Anyway, for the life of me, I couldnāt describe those triangle fried breakfast items served with beans etc etc. The server mustāve thought what the heck, she canāt even ask for a bloomin potato scone!!! I just explained I have MSā¦ the usual spealā¦I said to my other half, Iām going to get a tshirt printedā¦and I have doneā¦ āMS gets on my Nerves!!ā 
you mean hash browns? yeh i love the language, also how did i get to be dyslexic.
something strange happened to me the other day no idea why or how. I wrote 3 large words in a correspondance never used them before, and actually typed and spelled them correctly lol.
xxxxxxxxx
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Iāve heard this before, so Iām not the only one, but one day when making out my shopping list I told my daughter that I needed a loaf of raw toast. It wasnāt even a brain fog day!
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I bought myself a zero-gravity recliner garden chair the other day. I am having to lie down a lot between doing things and my outdoor chair is not comfortable and the beach mat is no longer that comfortable, and I fancied properly relaxing outside listening to the birds etc whilst the weather is nice.
The chair is seriously good!
The position is apparently one that astronauts are put into at launch into space, with the muscles and joints in the most relaxed position, so least affected by the G-force at take off. So it is therefore very restful for the whole body, and very comfortable. They say it makes you feel as if you are floating. I wouldnāt go that far, as I donāt think legs and body like lead will ever feel like floating, but they do feel lighter.
If your mobility is not too reduced then Iād highly recommend them - but make sure you get a proper zero-gravity chair - there are some that are described as such but they are NOT zero-gravity chairs. They are cheap - normal outdoor chair prices, so that is good.
I could do with one inside the house too! Iām surprised indoor ones are not made, so my outdoor chair may end up in the living room.
I always loved exercise, walking etc. I enjoyed having a good workout and feeling healthily tired, knowing that a good nightās sleep would follow and restore myself. Now walking / gardening / housework etc leaves me feeling overwhelmingly fatigued, and Iād try and finish a job before giving into the fatigue. That didnāt seem to be working, so Iāve now tried to adopt a ādo a littleā, then have a rest in the recliner as soon as I start feeling the fatigue levels really coming on. And trying to make exercise linked in my mind with nice relaxation (in the recliner, listening or thinking of something nice), just how it used to be, rather than trying to push through and having my brain linking exercise with debilitating fatigue. Will it work? Who knows? Iām all for trying to trick the brain into better behaviour!
It does give me a method that seems to help me pace myself better.
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