So What do you do with your day ???

I am just wondering what everybody gets upto during the day, as a sufferer of Fibro and always in pain i try not just to sit infront of the TV all day, I do try to do normal day to day tasks but find it very difficult, for example a simple task like washing the dishes that would take my wife maybe 10mins will take me about 50mins as i have to keep sitting down to rest. after i have washed the pots i feel so Knakerd all i want to do is sit down.

I am finding it hard to keep my mind occupied, i do play professor layton games on the Nintendo DS but find i get very drowsy while playing and end up falling asleep LOL.

SO what do you do with your day ??

CHORLEY :)

15 Replies

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  • I am lucky enough that I can still work full time, all be it desk bound. However I find that moving is of paramount importance to keep the muscles from stiffening/cramping, move as much as you possibly can. Yes the DS makes me sleepy too (which helps on occasions) try Sudoku, Crosswords etc. a variation is good.

    Sue

  • Most of the time I am at uni, but if I'm not at uni in the morning I tend to sleep in all day. I've just woke up now lol.

  • Sue, Cheers i hear what you are saying, i do play other games and do move around, I do have a Caravan to renovate but i can only do small bits at a time. :)

    CSX, I am up every morning for 7am with my wife and daughter by 10 am i a Shatterd and on coffee number 5 LOL. :)

  • Hiya Chorley, I tend to have different levels of activity each day depending on my M.E/Fibro. During my bad flare-ups I sleep, when I'm coming out of a flare-up I come downstairs during the day and watch tv between putting washing loads on, and on good days I potter around doing light chores (dusting, washing up, easy cooking) but sit down/rest every 20 mins as advised by my OT. My mum who is also my carer comes round every few days to help with heavier chores, and checks on me every morning to see if she needs to do the school run for me. Due to having a eight year old daughter, there is always that needs sorting out during the day.......sending gentle hugs to all xx

  • The rest of the day? i dont know where my day ends or begins lol, tend to spend a lot of my time alone. I just lost my dog of 18 years and i am contemplating getting a small one for company. I use the pc but at times i get exhausted using that. I basically cannot make plans the first thing that i do with my day is chech the weather on waking. I then move gradually to test what is working on me for that day. I then spend all morning on the toilet. Waiting for the carers to call on me and give me my daily wash because i cannot use the staircase.. by this time i am ready to sit and read my emails. I draw my curtains early so as to be in darkness. I then read but i fall asleep, basically i will do anything for an hour from my armchair all accompanied with pain and lack of mobility. I will then brave the crutches depending on the day. I will then always "cant wait to get to my chair" attitude or "Get me to bed" i dont drink alcohol, i dont do drugs. I am on strong matizapine anti depressants and cholestral drugs. pain killers do not work, but i am having physio first session next week. I have to get a taxi for this service there and back. To me its a day out, sounds sad doesnt it.But the reality of all of this is that no one really cares, you have to accept and move forward but i wont give up without a fight and i will now try to be ontop of this as my time moves on. I very rarely have an appetite i am not sure if my medication is causing this or is it common with people who have FM?

  • I too work, have you had a look on this site for a group meeting near you? They are normally around once a month so its not much in a taxi if you cant drive. I too sleep and sometimes zone out the whole day however I do still work full time too but looking at having to drop some hours :( which means I'll have even less to do during the days because my income will drop. I always assess my day when I wake up. Not sure if you have been advised about an activity controller called "pacing" Google it if not because its great, it teaches you how to compartmentalise your daily tasks and helps you decide wat you can and can't do that day so that it doesn't maketoo big a impact on the days following. For the 4 days i work that is all i do. I do NOT do anything else. On my first day off I rest then on my second day off I will do some simple taksks at home and then something I enjoy in the evening eg cinema, dining out then the next day I will do some simple tasks and rest ready to go back to work. If you think ahead and structure your days but only with manageable tasks this should help your days become more stable and your symptoms less erratic. Hope you've found something fun today :) xx

  • I also worked until six years ago, until a flare up from which I didn't recover. If I hadn't been a crafter with lots of interests I think I would have gone under - and I'm pretty sure that goes for a lot of us. I do spend a lot of time on the computer, but crafting/doing art is real therapy for me, and I post some of the results on my blog atcexchange.blogspot.com. I share my art journals in the hope they might help somebody else. When I'm well enough I teach occasional classes, which I enjoy a lot. I think its very important to have a sense that you are still connected to the world - and the internet and forums like this help a LOT with that. Even though it might not seem like it, there are a lot of people much worse off, so I try to do something for them also ... for example I make cards which can be sold for charity.

  • I get up at 7.30 am no matter how much sleep I have had and go down stairs. The dog and I then go around the garden in our dressing gowns (only joking - about the dog I wear mine). I usually have a headache when I wake up and getting some light eases them. I then make myself a very good cup of coffee and watch TV.

    After breakfast I have a shower, I have stopped using the stair lift that is installed as I am trying to get more excercise into my life. I go to work at about 10.30 am until 1.00 pm.

    While heating up something in the oven I go for a 10 minute very gentle walk . I have two hours off work at lunch time and usually put some stuff in or out of the dishwasher. Some days I go back to work for a couple of hours or I read or watch the birds on the bird feeder outside the window.

    I have just started having another 10 minute very gentle walk before supper. I am usually in bed with two hot water bottles by 10.00pm. I also listen to a relaxation CD after I switch off the light.

    My husband does 95% of the chores in the house. I decided the other day to clean out the fridge and realised that if I did one shelf at a time in a week it would be clean!

  • Forgot to say that I have a desk job and work from home, so no travel involved.

  • Hi All,

    THANKS FOR ALL OF YOUR POSTS

    CHORLEY :)

  • For me I think it is important to feel a sense of momentum in your life, and sense progression. it is really easy to become stagnant. In order to feel you are moving you dont really need to do that much, just something to give purpose to your day. I have just recently create a chart that i have to fill in everyday, it has four section; career, social, misc, and health. Everyday i rate out of 10 how i feel, and have to do one thing from each section, and HAVE TO FILL IN THE FORM:

    carear: this can be as simple as watching 2 minutes of a video on youtube about your field, or reading half a page of an applicable book. or if you don't know what you want to do with your life, slowly think about it. if you feel good do an hour or so.

    misc: this can be a simple as washing up 2 dishes. if yu feel good do them all.

    health: every morning i sit outside and drink a cup of tea, this does wonders for me, if i can i try to do some meditation. or it could be just drinking a smoothy, or a veg prominent meal. if you feel good do some research, or some exercise/yoga.

    Social: can be as simple as speaking to a mate for 5 minutes on the phone, or if you feel good get them to come round or go see them.

    at the end of the day i make sure out the form (which also counts towards health and misc). this is important because it makes tangible the things that you have done, and you feel a sense of achievement, it also helps you keep track of your progress. Rather than saying to day i did nothing, i can say i read a book, did the washing up, callled a friend, and got some fresh air. which is quite an achievement for someone with fibro.

    Also forcing yourself to wake up early really helps.

    I hope this helps you, it really has helped me. i just feel happier.

  • i too am like you; i never know how i am going to be or feel when i get up; the probs i have in the kitchen is the phsysical side such as chopping; cutting reaching for plates etc; my husband is now the main chopper; chef and dishwasher!

  • HI Chorley,

    Get on to your OT service and get them to give you a perching stool to usein the kitchen.I find mine invaluable you can also buy them online.

    I use it all the time.

    I work in care home for elderly people and persuaded the manager to buy one for each unit too! I use them as much as the clients!

    the legs ont hem are adjustable so you can have it at an angle to just perch your bottom on or flat so you can be sitting..they come with or without arms and backs I would suggest one at least with arms as its easier to stand again

    hope this helps

    I'm in a flare just now so not doing much other than sleeping when not working....but three weeks ago was laying new carpets so thats why the flares bad haha.

    Its great you have your caravan to work on....it doesn't matter how long a job takes or how much you can do each time...eventually it will be done and you can look at it and say ' I DID that!!!'

    tricia

  • hi I have two jobs and a nine year old to look after so i take a lot of painkillers and get on with it but when i sit down at 7 in the evening i come to a grinding holt even getting up for the loo kills me so i try and get everything done before i stiffern up

    Karen t

  • Thanks again to all who have commented,

    tiggerfan1 a perching stool i like the sound of one of those i will look into it :) and yes the caravan is somthing to do and both me and my wife will be stnding back saying we did that.

    Oh well time to wash the post again LOL

    CHORLEY :)

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