As my friends on here know,changing a duvet tests me most as a survivor. This is because my weak arm and hand cannot flick things properly, cannot stuff a duvet into its cover properly and, generally speaking, is not up to the task. I change the duvet, however, because it challenges my tenacity, will power and patience. As you all know, this feat is achieved with a great degree of swearing and several rests between each stage of the task.
As a survivor, I have found Lockdown 3 the most challenging. With life on hold it is easier to put things off until tomorrow. Indeed, today I planned the duvet change for tomorrow, but my conscience kept asking me why, as I had little else to do with my time today. Reluctantly, I went upstairs, chose the under sheet and duvet and, with the usual frustration, changed the duvet. I suspect the day I abandon this task will be the beginning of the end.
My reward tonight will be a clean duvet and, I hope, a good night's sleep. Never give up, my friends, never give up!
i dont use a duvet, jolly old blankets for me. So its easier but still a right struggle. I have a list of ten essentials each morning and make bed gets on the list.
I find it hard to get motivated during this third hibernation. I spoke with a SS from our time and she now works full time. She loves this lock down and is in essence using the time to sort through her house room by room.
i am like you, puting everything off.
lets hope we see a light at the end of this tunnel by the end of the year.
anyone suffering stroke in 2020 has my utmost sympathy.
Well done John. Like you, I have found Lockdown 3 the worst of the 3. With lockdown 1, I went through every cupboard, every drawer, both wardrobes and had a good clearout, sort out and cleaned so everything was spit spot and totally organised. This lockdown has been a 'can't be bothered' one.
I was all ready to go to Specsavers yesterday to have my reading glasses mended. The arm has fallen off and needs screwing back on. However, when I woke up and looked out of the window - 4" of snow :( Eventually it stopped and is now slowly thawing so should be back on the road today.
I thought wwas on my own with blankets.I dont want a duvet blankets are cosier but a lot of hard work. Making my bed is the dreaded job of th day but once its done Iam much happier. The hard partis bed changing day I dread that. Best wishes to you all. Norma.
I sleep quite cool and blankets can get the temperature just right. We have a pair of hand made quilts which are lightweight, surprisingly warm and pretty. I also have one of those blankets full of holes, often nowadays described as a cot blanket.
Another delight of a stroke is that i now have unexplained heat rashes, so no very warm beds.
isnt it great that we can mention such small problems, when we started out so seriously disabled.
in some ways things do get better but I have got this unexplained strange feeling in my head all the tme and that doesnt seem to improve. As I have said before it affects everything I do. We have just been for our afternoon walk down a lane which I cannot enjoy as my balance is awful and my head and eyes feel completely wrong I cannot explain to anybody how it feels and theey think I am making a fuss as I look O.K..I wish somebody has got somethng similar and could let me know how they cope with it. Norma.
most or at least many of us get this fatigue in the brain. I call it SF. No two strokes are the same but many of the symptoms are shared. It has been by far the worst part of stroke for me and i am sure i am far from unique.
mine came on then off, several times each day. I had to sit, maybe snooze, and wait for the worst to pass. I even used to grade the level when recording my diary. Then of course there were bad days and good days.
i soon grasped that good full night time sleep is essential to get SF to ease.
i dont know of any medical progress that answers our search for a cure. However, ME sufferers seem to be getting a lot of attention and maybe we will get help from that sourse. I believe there is an arm of ME known as cfs.
my sf has eased but it took four years before i felt i could cooe with it.
i do recall two days when the SF lifted. Sheer bliss.
for whatever reason, there is little sympathy nor understanding of what we go through "you look so well" is so frequently used as some form of denial that we are unwell.
Balance is of course likely to suffer. Not too bad for me. I am lucky. My brilliant yoga teacher immediately picked that my grounding was miles off centre. She suggested magnetic wristband, but it didnt work. However, just duscussing these things seemed to help my brain detect my centre. Stand upright, supported if required, close eyes and feel your gravitational pull. My centre is yards and yards away to the left.
you really are not alone. There are hundreds of us out here.
lastly, a smile heps a lot, not for others, but a smile to yourself.
thank you for posting exactly how the 'after stroke fatigue' feels. I could not find the right words to express myself, whereas you have done just that beautifully.
Years ago another SS suggested we should not push nor fight the SF but just rest until it eased. I followed that suggestion and it works. Fghting it can work for a day or two, but then there is a crash.
i am sure that upbeat or positive is the best way to go. Big smiles several times a day will help keep the positive going.
I guess i am over sensitive, but i noticed how just about everyone assumes we can not be unwell, and i also notice quite a lot of hostility. I have given this a lot of thought and conclude that most peoples sympathy is limited to six weeks.
i concluded that stroke changes our personality. We can not be the same as before stroke. So we have to work on the "new me". I notice a lot of similarity is arising from the pandemic. They even talk about the new me.
the stroke bit me late in 2015 and when i looked at the statistics, it showed 60 or 65% split from their partners. Not sure about the way that was worked, but it does confirm we are not the same people. So unlikely to remain in the same relationship.
i am an FCA. But i now cant even do a tax return. My brain no longer works the same way.
i am trying to see the plus side of the dramatic change in me. The pandemic is making this so much more difficult. I have settled to do simple things, now i need someone to take over the less simple things i used to do.
there must be thousands and thousands in the same situation.
so be positive, smile and be assured you are not alone.
Thanks Jane for replying it helps such alot to know other people do understand what I am going through. I depend solely on my husband for eveything I do try to do dusting and always get the dinner but nothing is easy. Still we keep smilling and carry on we have got no choice. Please let me know if you hear anything how to deal with it. Thanks again. Norma.
Thanks Colin sitting down is the best but I cant do that all day and it doesnt go away when I sit and rest . I sound a real moaner dont I but I have had this for 3 and a half years. I have been patient but enough is enough. I do smile a lot and yes it does make you feel a bit better. Norma.
I could rest , maybe even nod off, then have an hour or two of reasonable quality. It was not continuous. Is yours full on all the time ?
I also had just two odd days when the SF lifted. I cant put into words the relief and wonder of those two odd days.
It was three and a half years when the change occurred. It took me another six moths to grasp that the SF was no longer so distressing. I wish that this could happen for you.
I dont know what then happens with stroke as i have had somewhat dramatic heart issues which trumped the stroke issues. But i think the SF eases to a stage when life becomes pleasant.
i do understand the nature of the exasperation that you have to endure. do you have better days and worse days or is this day in and day out ?
my cat gives me huge contentment. He has helped me through this. He adopted us about a year after stroke.
Thanks Colin. It is continuous even the doctor nor specialists seem to know what is going on. I always say that I have forgotton what normal feels like..I have to live this different life.and cope with it . I have blood tests now and again but thats about it.
we must smile smile and smile again ,trying to find something good.
Somethin good: My much loved king size cat had a bad tummy last night.he went to his sleeping spot early, and then didnt eat breakfast at 5am. (Cricket on TV). I love him so much. Had nightmares.
but now he has had lunch, is outside, sitting in the sun and back to his cheery self. Nothing pleases me more than his wellbeing.
he doesnt mind that i had a stroke. He takes me as i am.
Having run a Small B and B I find the following easiest way of getting duvet into cover. Put empty cover flat on bed, opening at the foot, duvet on floor at foot of bed. Holding top left hand corner of duvet in right hand start to insert duvet along left hand seam of cover to top LH corner, hold duvet and cover in left hand or use freezer bag gripper, then take RH corner of duvet in right hand and insert up to RH corner of cover alone right hand seam of cover up to the corner, another gripper would be handy. Then carefully ease cover down the sides of the duvet and insert duvet into cover bottom corners.close cover. If you up to shaking it do if nota few wrinkles won't hurt. Don't forget to remove grippers! Good luck. Marylin
Your cat sounds lovely Colin I adore any animals somehow i f I have got a bad day I only have to look at a dog or cat and immediately I feel much better they never change toward you however you are. I used to have a cockatiel he whistled roll out the barrel I taught him. When I did thye dusting in the lounge I whistled it over and over and he picked it up. He used to amuse the people waiting in the vets . That was pre stroke of course. I missed him for about a year when he died. Norma.
Indeed, my dear big cat Sooty has helped me through a stroke and now through open heart surgery. He keeps Rose company if i am in hospital. He helps keep me sane. He is my reason to get up each morning.
i would give my life to him. Will you have another pet now that cockatiel has moved to a better world ?
I just get pleasure out of my granddogs 2 of my sond have dogs and I get a lot of pleasure out of them.We are too old to have another pet it wouldnt be fair to the animal but I really miss having birds I had budgies for years before I had the cockatiel he lived till he was 23. Best wishes Norma.