1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Energy saving tips for the moderately severe patient

Discussion in 'Lifestyle Management' started by BEG, Apr 13, 2010.

  1. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    I'm wondering if Sallysblooms can give a link where one can be purchased!

    :Sign Please:​
     
  2. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US

    LOL, gracenote. Yes, my vacuuming husband is the greatest. If you must tackle a room yourself, I have vacuumed from a seated position using the available seating in the room, with rests in between. If I am able, I've also walked with the vacuum next to me to prevent my arms doing too much aerobic movement.

    For the tiled kitchen floor, I purchased a Featherweight Bissell. I can pick it up with one finger. I walk with it around the kitchen.

    Yep, those pets surely do make the job harder, and take a lot from us, too.
     
  3. Victoria

    Victoria Senior Member

    Messages:
    1,371
    Likes:
    130
    Melbourne, Australia
    My biggest hints would be...............

    Dont' be afraid of change. If necessary, get some help to change your home to be more user friendly. "Look outside the square". By that I mean don't be afraid to do things differently.

    It may seem obvious, but leaving regularly used kitchen pots, utensils, crockery, cutlery out on the bench 24/7 (instead of bending down to put them away). If family & friends pop in regularly, leave a tray with coffee mugs, tea cups etc permanantly laid on the bench. Ask people to bring the morning/afternoon tea.

    Dont' hesitate to ask guests (if you have them) to bring a main course for a meal. Ask them to do the dishes for you. Don't feel embarrassed about this.

    Use a fork, spoon, large bowl if you're a little clumsy & tend to spill things - who cares whether your meal is on a proper dinner plate or low pasta bowl.

    Use your nicest crockery & glassware for your meal. Make every day special (in whatever way you can).

    Make sure there's a space/shelf for everything at accessible height.

    Leave stools/chairs at regular intervals around the house, for rests. My brother & partner gave me a proper little computer table for Christmas which is next to my open balcony doors. I have it set up so that I can look out at my potted plants when I sit at the computer. In fact I often eat on a tray at this little table. I bought a really good ergonomic office chair with armrests the week after I retired from full time work. By chance it was on sale & cost about a quarter of the original chair I was thinking of buying. It was one of many great things that happened to me in the first weeks after I finished work.

    I often sit next to the open balcony doors reading or just sitting - don't apologise for doing nothing all day - learn to enjoy simple pleasures. Look after number one, ie you. Obviously if you have children, you can't always do this, but if the children are old enough & healthy, there's no reason why they can't do tasks for you.

    Ensure you have laundry baskets on wheels. Put your dinner on a tea trolley & wheel it to the table (if it's some distance from the food prep area or kitchen).

    Buy a high clothes horse/airer on wheels - don't know whether you have these overseas - in my small flat, my clothes horse on wheels, is about 5 foot high. Many years ago, I put castors on a small coffee table so I can move it around.

    Wear the same few clothes to save washing. Make sure they're drip dry (to save ironing).

    Forget vanity.

    Pretend you're in a space ship & do EVERYTHING in slow motion - move mindfully. Once you learn to walk mindfully, you will be amazed how much more relaxing a short walk down the street can be. Everyone always passes me on my walks. Everyone has got into the habit of rushing everywhere. Even I used to rush years ago (when I didn't have to).

    AND FOR ALL THOSE SINGLE PEOPLE, BUY A HIGH, KING SIZE SINGLE BED (if you can afford it). forget those overnight guests you may never have. My NEW bed bought a few weeks ago is just SOOOOOO easy to make. It's so high, I slide out of bed straight into my slippers in the morning.

    I can't believe how much better I sleep with a new bed. It's for allergy sufferers & good for arthritis & inflammatory conditions. Of course I was lucky enough to be able to afford to buy a good bed. It was on top of the "must have" list.

    If you have potted plants, ensure they are on a stand or high up so you don't have to bend to water them.

    If you can afford it, have your groceries delivered. Cook simply, so you don't have to spend too much time cutting, peeling or slicing.

    Be self indulgent. When it comes to your body - love it or leave it. Don't blow dry your hair. let it dry naturally. Wear loose clothes.

    Extravagent perhaps, but I put a squirt of shampoo under the running tap when I have a bath in the morning. Seems to keep the bath clean for about 3 weeks.

    Make glamerous PJ's your best friend. Use a hot water bottle regularly for all those aches & pains. Physiotherapists like ice for pain. Traditional Chinese Medicine goes for heat & I agree with them - heat increase blood flow & feels much more soothing.

    Depending on where you live & the season, try & get some fresh air every day. If you can't get out to sit in the sun or well enough to go for a walk, sit on a chair by an open window or have your bed moved closer to a window.

    Make a siesta time in your day. Keep your life as simple as possible. I am not as unwell as most people on this forum, but I do have intermittant bad back pain days (& nights).

    I aim to do one thing every day. Today, i spent two hours in the garden. Then I fell asleep about 4.00pm. Tonight I am too tired to cook, so I just had fruit & herbal tea for dinner.

    Ensure you have a large writing pad in a central location & write notes for yourself. As each task/shopping/phonebill paid/phone call is done, cross it off.

    I have a foolscap writing pad in front of my computer screen & write everything I want to remember to do on the computer. I have another in the kitchen & write shopping, chores on that.

    If you can manage it, "Clear out the Trash" - get rid of things you haven't used in years. Don't be a hoarder. The more you have, the more work it creates.

    Accept your illness & that you may never do some things ever again. Find easier, simpler hobbies. Don't be afraid to attempt to educate yourself (if you're not well enough to go to school, college & university).

    Accepting your illness doesn't mean giving up on hope (for a recovery), it just means accepting that this is the way it is for today & the near future - Let Go of Anger (this is a hard one, I have to admit). I spent (or wasted )years full of resentment & anger because people didn't understand that I couldn't do what I used to. Learn how to say No & ignore the looks & protests. I finally realised that people didn't make me angry - I made myself angry.

    Perhaps like me, accept that you'll never travel overseas again, so indulge yourself, & buy some travel DVD's & become an armchair traveller. Does your local library have a disabled delivery service in your town (for books & movies)?

    If money is tight, make an effort to find out what you can get for free or half price.
     
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    331
    Southern USA
    Lots of good ideas there. I like the comfy pj part. MANY days I stay in jammies and at my most ill this year, months on end I never dressed.

    Now that I feel better, I wear MAXI dresses all of the time! If I am chilly, I can add a little cropped sweater. They feel like jammies, but you feel dressed and look nice. On a really bad day, you do NOT care of course, but on better days, it is fun to look a bit better and still be super comfy. When my hubby pushes my w.chair on our walks, I wear Maxi's a lot. I think I have 8 Maxi's now. :Retro smile:
     
  5. bee33

    bee33

    Messages:
    54
    Likes:
    4
    I find it very hard to try to do things that help me rest if I am out. I don't have a car, because i can't afford one, and even if I could it would be too difficult to concentrate to drive. If I want to go into the city, I have to take a bus, then a ferry, then the subway or another bus. It involves an enourmous amount of standing, walking, and climbing stairs. Sometimes I could sit, like when I'm waiting for the bus, but if I have to sit down on the sidewalk the contemprous stares are a bit hard to take, so I just stand. (Once I tried to lie down in the grass by the bus stop and someone almost immediately stopped in their car to ask if I was okay.) I can't ask for someone to give me a seat on the bus because I look perfectly fine and I would be too embarrassed.

    I've thought about getting some kind of motorized wheelchair, which would allow me to go places sometimes instead of just having to give up on going anywhere and just stay home, unless it's a necessity, like a doc's appointment, but I would feel too embarrassed. I can walk, I can even run. I would feel like a liar and a fraud. I am naturally very shy and it's very hard for me to ask for any special accommodation.

    The buses are wheelchair accessible but it's a big to-do: the bus driver has to get out of his seat to operate a lift. It takes a long time and everyone usually rolls their eyes. i can't imagine putting myself in that position. I guess I could do it, or would have to, if I was completely unable to walk. But as it is, I just give up on going places. To run errands nearby I ride a bike.

    Anyone have similar issues or doubts? How have you resolved them?
     
  6. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    i like the idea of the maxi dresses Sassy, im' too short to wear em tho! haha! ;)
     
  7. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    bee33

    Have you ever tried using a cane? I use one sometimes when I'm out and about and find it handy to have something to lean on when I have to stand in one place. They also make canes with seats that turn into stools if you need to sit. I also imagine that if you got on a bus with a cane that someone would be happy to give you a seat.
     
  8. Sasha

    Sasha Fine, thank you

    Messages:
    8,424
    Likes:
    7,498
    UK
    It seems obvious now you've pointed it out, Victoria! It hasn't for the last three years of my relapse! Thank you!:D
     
  9. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    104
    England
    bee33

    I second the idea of a stick - they make the difference between being able to walk 50 yards and being able to walk a mile - seriously - I carry a foldable one in a backpack a lot of the time when I go out - just in case
     
  10. Victoria

    Victoria Senior Member

    Messages:
    1,371
    Likes:
    130
    Melbourne, Australia
    Back surgery in June 2008 taught me many lessons.....

    When I was booked in for lumbar disc surgery in 2008, I was aware that I wouldn't be able to sit from more than 10-15 minutes for quite some days/weeks after the surgery.

    I had to lie flat or stand up (straight). No bending (in theory pretty hard to do).

    Being the obsessively organised person that I am, 2 weeks before the surgery, every task I did or kitchen utensil or furniture I used, I worked out how I would use it if I couldn't bend.

    I made batches of my favourite soups, some casseroles for the freezer. My brother was able to bring me home because the hospital was only 15 minutes away & he could alter the front seat to lay back as far as possible (if living further than 30 minutes drive, i would have come home via ambulance).

    When I walked in the front door, I asked my brother to pull out a week's worth of meals from the freezer (which is the lower half of my fridge & I couldn't bend). i already had fruit in the fridge which kept well, & put these back on the kitchen bench to come back to room temp. I already had prescr pain meds (from having severe back pain).

    I had every piece of regularly used crockery, cutlery, pots & pans on the kitchen bench (or sitting on the stove), including the wooden spoon, sharp knife, vegie peeler sitting next to the cutting board on the kitchen bench. i had a tray with cups/mugs, plates. i had the biscuit jar next to this (for visitors).

    I had put the kitchen rubbish bin on an upturned stout cane basket to raise it up high. I have been putting several plastic bags in the kitchen rubbish bin for years, so that as you take one bagful out & tie it ready to take out to the council bins, you have 3-4 more bin liners still in the bin. This means you only have to bend really low to line the rubbish bin every 2-3 weeks.The bin lined with several bags doesn' t get smelly (if you remove the rubbish regularly). I had moved furniture & placed everything within reach. I moved the dvd video players to a higher shelf. I had the pile of my favourite dvd's on top ready to use for the first couple of weeks. I had washed, dried & put away every piece of linen & clothing.

    Every piece of clothing I wore for the next 6 weeks was drip dry (I actually wore the same 2 changes of clothes nearly every day)

    I had every book, magazine that I might want on the dining table. I had matches & candles within reach (in case of a storm & power black out - it was mid winter).

    I gave keys to brothers, & a couple of neighbours. Asked my neighbour to get my mail (while in hospital & for the first few days I was home). I paid bills that were due (before they arrived, by just doing an estimation of what they were the previous year).

    And of course fresh bed linen & a new long t-shirt nightie as I wouldn't be able to bend to put pj's on. I had worn slip on shoes to the hospital so I wouldn't have to put shoes & socks on. When I walked in the front door I slipped my loafer shoes off & slipped my slippers on.

    I had the phone numbers of the closest restaurent home delivery service pinned to the fridge (in case I couldn't cook). I made sure I had supplies of everything imaginable for the next 5-6 weeks (except fresh vegies of course). I had my wheeled shopping trolley ready to walk slowly to the nearest shops (5 minutes away).

    I had enough cash in my purse to deal with the next month's purchases.

    I had spoken to the nearest pharmacy (who will home deliver free - they're only 5 mins walk).

    I had bought a "pick up stick" at the OT dept in the hospital & had practised before I came home.

    And to tell you how I picked up the soap every time I dropped it in the shower...........

    ......Hold the outspread wet face washer out flat & drop it on the wet slippery soap (like a little outspread parachute). Use the pick up stick to grasp the wet face washer around the soap & you can pick it up. (ever tried to pick up wet soap you've dropped it on the shower floor when you can't bend???).

    My clothes dryer is already on a low table in the bathroom so I haven't had to bend for the last 10 years.

    In fact, ever since 1980, when the terrible back pain started, I had been "rehearsing" for this back surgery day in 2008.

    I had been half rolling out of bed & throwing my upper body upright for years, so when the physio in the hospital came to show me how to get out bed after the surgery, i could do exactly what she demonstrated straight off.

    I am not joking.

    I am so well organised, that......................

    I daresay when I think I am going to die, I will have starched & ironed the silk coffin liner & dug my grave to make sure it is neat & square. I will have written the funeral service & arranged the potted flower/plants ready to be planted over my grave. I will have put the grave digger's spade next to the grave, handle upright, so he won't have to bend to pick it up. And I will have placed umbrellas next to the chairs at the grave side in case it rains when they bury me!:D

    In fact, I will have emailed God the day before, requesting a sunny day & a light breeze on the day of my funeral.:D

    Now you know why I am single & live on my own LOL. I'm a pain in the a****.

    But some people love me because I used to be the perfect house guest many years ago.
     
  11. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    Victoria, you are one amazing lady!!!!
    Love your post!

    Camas, I love the idea of the cain with the seat. I think I will pop one into my
    car just for those long lines at the bank teller. Today I got so fed up (my g-suit
    was wet after washing, so I couldn't wear it) I just sat on the floor in the bank
    line. I was really short of fainting, but people just don't notice because I look
    healthy and athletic.
     
  12. Victoria

    Victoria Senior Member

    Messages:
    1,371
    Likes:
    130
    Melbourne, Australia
    Spindrift,

    I'll have to take you aside & teach you how to look half dead ;)

    It's how all of us chronic pain & fatigue sufferers look in 2010 - it's the latest fashion.

    But seriously, isn't it frustrating when people assume healthy looking means, healthy "as an ox" beneath the skin.

    If you're deaf, nobody demands proof. If you're blind, no one makes flippant remarks. If you're wearing a sling, no one asks to see the x-rays of your broken bones.

    And no matter what anyone says, strangers on first meeting, DO go by appearance.

    Spindrift, now I just say I can't stand up because I've JUST had back surgery. That's not true, it was nearly 2 years ago, but saying that usually makes some one help me if I'm having a bad pain day & need to sit down in a shop.

    Sometimes one has to stretch the truth a wee bit :innocent1:, to get some help when you need it.
     
  13. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    331
    Southern USA
    Danib, I have one of my maxi's on today. I have to talk to my landscaper when he comes to go over everything. We moved to a new home this fall and we had the backyard totally redone yesterday. It is wonderful! I will love sitting out there again. I have always loved gardening and FLOWERS. My hubby plants my flowers in front now, but the back needed to have all new plants, flowering scrubs and flowers.

    Anyway, I have to be comfy and look nice to see the landscape designer. I just hope so MUCH that I can feel good enough to walk around and talk to him.

    I was so ill yesterday that my husband had to drive home from work to oversee the work. So far, I am doing better today. I am sitting until he gets here.

    Oh, here is something else I do. I carry a darling Vera Bradly purse to keep my bp monitor, nail file and phone in. ha. I have to have things look great. Makes me feel good.

    I also keep a really cute file with a handle near my chair I got at Hobby Lobby with papers I need if I call a doctor etc. Phone numbers too.

    You all were talking about canes etc. My husband has to push me in a wheelchair for now, for longer trips to large stores. But when I get better, I will get one of the seats with rollers as a transition, then maybe that cane. I can walk into a restaurant and sit, small trips, but I can't stant or walk for a long time. It is much better now most days though.[​IMG]
     
  14. Navid

    Navid Senior Member

    Messages:
    410
    Likes:
    58
    This is fabulous...I LOVE it!!!!!! Thanks so much for sharing.:thumbsup:

    warmly, lisa
     
  15. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    Oh, Spin. That is the worst feeling -- been there many times! After about the third time I had to plop down in the middle of a grocery aisle, I decided a cane was in order. I was thrilled when our local health food store started offering a delivery service. Sure has made life easier.
     
  16. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    oh, grocery delivery! now that is the best :)
    Sally, i'm with you - looking cute is Very important to me. i refuse to look sick. no one is gonna see it damn it.
    (then of course i'm mad they dont' believe me, oh well.)
    i also have my nice purses - one day & one evening. they make me feel better about not being able to wear heels anymore.
     
  17. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    You don't sound like a pain in the @ss to me. You sound like a great deal of fun, and if you ever need a change of scenery you are welcome to come visit me anytime and help me get organized. :D
     
  18. Victoria

    Victoria Senior Member

    Messages:
    1,371
    Likes:
    130
    Melbourne, Australia
    Thankyou, camas,

    No one now, would describe me as "a great deal of fun", but I do have a wicked sense of humour (for those people who take the time to get to know me).

    I move & think too slowly to be much fun at all...........

    I usually need a few drinks to loosen me up, but as I don't drink alcohol these days, people rarely see my fun side.
     
  19. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    I've been in a relapse since the end of March and am having trouble getting around especially when there is more than minimal walking involved. My energy goes so low that I get winded and profoundly exhausted. Muscle weakness is not really the issue though there may be some deconditioning happening because I am needing to rest so much. I do get muscle pain in my upper back & neck and find it difficult to stand for any length of time.

    What kind of mobility aids helps most for walking when needed when the primary issue is the profound exhaustion? What are others using that is helpful to them & how is it helpful?

    I have started to use a stool in the kitchen so I can sit when feeding the cats or doing quick food prep. That seems to help.

    Tx!
     
  20. cgstar4

    cgstar4

    Messages:
    71
    Likes:
    3
    usa

See more popular forum discussions.

Share This Page