People’s tips:

• Tips from Ricky
• Tips from Ellen Adams.
• Tips from Jenn Vesperman.
• Tips from Emma Corcoran, especially for those from Melbourne, Australia.

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General stuff …

• Cooking Extra
  When you’re well enough to cook, make enough for two or
  three meals and freeze the rest in individual portions.
  Then on days when you can’t cook, you can just pull them
  out of the freezer and heat them up. This works best with
  things like soups, stews and rice dishes, but most
  anything can be frozen if you don’t mind the texture
  changing a bit.

• Timetables
  When I was a little better and a little more stable than I
  am now, it helped a lot to have a timetable to follow, a
  list of what I needed to do each day and when, and also -
  importantly – when I would stop and rest. I found that
  having a rhythm like that helped me not to “over-do it” and
  crash.

• Lists
  Diary, lists, notebooks and post-it notes can all help
  make up for brain-fogged thinking – keep a shopping list
  stuck on the fridge where you’ll remember to add things to
  it, write a note and put by the oven timer so you know why
  it’s going off, things like that.

• Holidays
  It’s rather difficult to take a day off from being sick,
  but even sick people can take a day off from ‘routine’.
  Get a friend to take you to a movie, the beach, a local
  park – anywhere you can sit or lie down when you need to.
  Sometimes, a change really is as good as a holiday …
  well, almost!

Gadgets …

• Electric toothbrush
  This makes it about a hundred times easier to brush your
  teeth! Instead of a million forward-back motions you just
  have to move it around to touch every surface.

• Crock-Pot
  A crock-pot for cooking will let you just throw an
  assortment of vegetables in and come back a few hours
  later to a lovely stew.

• Cordless phone
  You can keep this by your bed or chair instead of having
  to get up every time it rings. A really long extension
  cord will have the same effect provided your house isn’t
  too big!

• Kitchen timer
  A help with remembering things – the best way I found was
  to buy the really small sort that you can carry around,
  and leave it beside whatever it’s timing for. Or if
  you’ll be too far away to hear it, write a note saying
  what it’s for and stick it to the timer. And you can time
  all sorts of things – one of the best uses I’ve found is
  to set it for five minutes when I start running a bath,
  otherwise I almost invariably let it run over.

• Hand-held Shower
  This lets you shower sitting down which can be a godsend
  when you’re short on either energy or balance!

• Shower Board
  If you’re lucky enough to have – like I do – your shower
  set over a bath, you can get or make a board that will fit
  exactly over the edges of the bath and then sit on it.
  This is a wonderful thing for me – let me have a
  decent shower instead of a bath for the first time in a
  year!

• Sports Bottles
  Yes, I know sports are the last thing on your
  mind, but did you realize that a sports bottle will let
  you drink without sitting up? For those of us bedridden
  some or all of the time, this can be another thing to help
  save a little bit of energy.

Outsider things that can help …

• Home-delivery
  As well as mail-order catalogue that sell just about
  everything, many food shops will deliver your groceries for
  free, or for just a few dollars.

• Electric Carts / Wheelchairs
  Bigger shopping centers often have electric carts or
  wheelchairs (for these, you’ll need a friend to push!)
  available for disabled shoppers to borrow. If it works
  well, consider buying one so you can go to places that
  don’t have them for hire.

• Books on Tape
  Talking book libraries are often run by the blind
  associations in each state, and are open to everybody who
  has trouble reading – not just visually impaired people.
  You’ll usually need a signature from your doctor, and people
  with CFS can qualify either because of physical impairment
  (when holding up the book is hard), or cognitive difficulty
  (when you’re too brain-fogged to read properly). As an added
  bonus they’re usually free and will mail you the tapes so
  you don’t even need to go out for them.

• Council Services
  Local councils (at least in Australia) offer services such
  as meals-on-wheels and home help services which can assist
  you with house cleaning, cooking, shopping, etc.

I also have a list of things that I’ve found help me survive school on a separate
page in the form of a letter which I sent to the CFS-Y mailing
list last year.

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• Get a stool to help with tasks like washing dishes. Sitting while
  you wash dishes, chop veg, or watch a pre prepared meal cook takes
  less energy than standing to do the same tasks. Make sure the stool
  you get is high enough to let you do these tasks without bending, and
  if you need it, get one with arms and a back.

• Use pre prepared meals if you can afford it. If you can’t afford
  it (or would prefer to spend the money on treatments!) investigate
  Meals on Wheels or similar projects. Meals on Wheels and the like
  also give you some human contact with someone who cares and who will
  understand if you shuffle out in your nightie to let them in.

• If you’re one of the lucky ones (like me) who has recovered
  enough health to walk about without needing a stick just for
  balance and support – try using one anyway. It has several benefits -
  I find that it extends the length of time I can be out and about, it
  reduces the amount of stress and energy it takes me to do things…
  and it ensures that people DO give you a seat on a tram, or just make
  things just that little bit easier that makes SO MUCH difference!
  And if you’re unexpectedly taken ill while you’re out, you’ve got it
  with you. (I went to get a blood test done before work, and went to
  work, and almost literally fell over suddenly after a meeting…
  needed the stick to hobble from my desk to a couch in our office.)

• Use conveniences where you can. A clothes dryer takes less effort
  than hanging clothes on a line and taking them down. If that’s too
  expensive, a cheap drying rack from Kmart in the laundry room takes
  less effort than a clothesline in the back yard. Leaving washed
  dishes in the rack to air dry is easier than towelling everything
  off. Soaking dishes in soapy water in the sink is good enough to get
  them clean – you don’t need to scrub every plate.

• Use timed cooking stuff. A microwave. A toasting oven which turns
  itself off after a set time. A crockpot. An electric kettle which
  turns itself off. Whenever buying kitchen appliances, buy the one
  with a timer. You can get up after you have the energy to do so..
  and the savings on scrubbing-burned-pots is immense.

• If you can manage it, no carpets. Swirling a mop around, or
  shoving a broom around, is much lighter and easier (to me, anyway)
  than hauling a vacuum cleaner out and plugging it in and running it
  over stuff. And non carpetted floors look and feel cleaner even when
  they’re dirty.

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• One great thing I’ve done for the past 3 years is to be part of the Royal Inst. for the Blind (RVIB) talking book library. I think there is one in every state as I’ve just moved back from NSW and i belonged to the library there as well. I think they have a charge of $50 when you first join. [Ed: This information's now out of date - check out the talking books article for more current information.]
• Also, for those who may be interested in doing some study but can’t read … I recommenced study at Deakin Uni (off-campus) this last semester. Their DRC (disability resource center) arranges for my texts and lecture notes to be put on tape and I get special allowances for exams.
• I’m an avid listener of Radio National, I find they have some fascinating programs which keep me in touch with what is happening in the world. This means I actually have some interesting conversation in me when I talk to friends (apart from moaning about how I’m feeling which isn’t very interesting!)
• Someone from a mailing list mailed me with an organic fruit and vegetable place which delivers in Melbourne… The Green Line. Ph. 03 98892299 (I don’t know if they have a net site).

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This article was originally published at Coping Tips From Emma Corcoran and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

I’m new to Fibromyalgia (diagnosed 2 days ago) so forgive
any ignorance, but I’ve been partially disabled with crohns
disease for 2.5 years. A friend of mine commented that maybe
I should share the ways I cope with other people. I think my
situation is somewhat unusual (and lucky) in that I’m not as
limited financially as many people so I’m not sure my
suggestions are useful to everyone but here goes.

• I got my disability company to cooperate with my
  employer and buy me a computer for my home so I can get my
  email and work from home.

• I signed up for online banking so that I can pay my
  bills easily and in 10 minutes

• Online banking was costing a lot. I told my bank that
  I was planning to research switching banks to get it for
  free. They said they would give it to me free for the
  next year. (I never knew that they could be so flexible
  actually)

• I sent the bank an email and got “bank by mail”
  envelopes for deposits

• The guy across the street came to complain about the
  way my lawn looked. I offered to hire him to take care of
  it. He took the job. I also have him take the trash to
  the curb on trash day.

• I have a maid come in every other week. I told her
  from the beginning that I expect her to straighten up and
  clean (and do the dishes in the sink). I don’t pick up
  for her. She puts fresh sheets on my bed and carries my
  laundry downstairs. Every other week is affordable and
  still enough to keep the health dept at bay!

• Lower your standards when it comes to the house being
  presentable. Your friends don’t care. Even your mother
  will understand. Anyone who doesn’t–don’t invite them
  over. (I tell them if the state of anything disturbs them
  they can feel free to correct it. One friend straightens
  up the silverware drawer in an absent minded way every
  time he’s here!)

• I’m not a hostess anymore. My friends come over,
  bring snacks, help themselves to things, or fix something
  for both of us. Give up waiting on the able bodied.

• There are dry cleaners who will pick up and deliver.
  Mine leaves my clothes hanging on the door knocker and
  accrues a bill.

• When the kitchen remodellers suggested I come to their
  showroom to select a Formica sample, I told them they
  needed to come to me. I’m spending money and I’d be too
  tired to make a decision if I went to them (they were fine
  with this). Now the project is all planned and I’ve yet
  to go to their showroom!

• Have things shipped to the house instead of carrying
  them home. For my new cook-ware I went to the store to
  select it and then had them order it to be shipped to my
  house. I ordered shutters at hechingers and they said
  they’d call me when they came in–I said no, just have
  them shipped to my house. Once I called Nordstroms,
  explained the kinds of shoes I liked and they shipped 12
  pair to my office. I tried them on and they had UPS pick
  up the rejects. (And, of course, there’s classic mail
  order)

• My latest idea is to have dinner parties with a “guest
  chef”. I have friends who cook and everyone would enjoy
  getting together. I’ll just sit on the sofa and be
  entertaining.

• I can’t drive for more than a couple of hours so I
  can’t get myself to the beach. This year I’m going with a
  group of friends. I have a ride there and back, my own
  room, and everyone else is organizing food
  shopping/cooking etc. I’m paying a little extra money so
  I don’t feel badly for not participating in the work.
  They appreciate the extra funding for the trip.

• I don’t work on Wednesdays. I work part time these
  days and found that a whole day off in the middle of the
  week was the most restful option for me. Also, making it
  a regular day is easier for my boss and employees to
  remember.

• I have a massage therapist come to my house. I found
  out that most are happy to do so, they just don’t
  advertise it. Some charge an extra $5. (I’m going to
  see about getting my insurance to pay for it next)
  Massage really helps the aches and pains. (Massage every
  other week, and a maid every other week–it works!)

• Take the car to the dealer to get work done. Last
  time I called ahead, explained that if they would give me
  a discount I wouldn’t need to shop around for a good price
  elsewhere. I got 15% off my brake job, a free state
  inspection, and I had them throw in a carwash–they have
  one on the premises for the new cars and it saves an
  errand. They also are accommodating about giving me a ride
  to work.

• I have a house-mate who’s a good friend of mine. I
  give him a serious break on rent in exchange for some of
  his help. He does grocery shopping and a few other
  things. If he gets his own place, I’m considering
  offering a displaced wife room, board, and some money to
  live here and look after me and the house. If you have
  the space you might consider bartering it for services.

• Support your neighborhood drug store. There’s a
  family owned place near me. My drugs cost over a thousand
  dollars a month (even though I pay much less with a
  prescription plan). I prefer the income go to them rather
  than to a chain. They deliver my prescriptions to the
  house and are happy to throw in anything else I might
  request. Delivery is free.

• Grocery stores do deliver. In my area, Safeway
  delivers groceries. Alternatively, I often get my
  house-mate to take me so I can pick things out but he will
  lead the excursion (I get distracted), and carry
  everything.

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This article was originally published at Coping Tips From EllenAdams and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Top Five Indispensable Gadgets For Those With Fibromyalgia/CFS – The things you just shouldn’t have to live without!

Looking After Yourself – Surviving Brainfog.

Coping with Loneliness.

Communication – some thoughts on the difficulties of communication the reality of CFS to those who aren’t sick. Includes lots of quotes from a discussion on CFS-20s.

Tips for dealing with Fibro/CFS, the practical ones.

Dealing with Doctors – Hints and tips from Christa, who’s on the CFS-20s list.

Coping Strategies – general ones, how I survive.

Surviving Diets – subtitled “How not to go insane when your doctor forbids gluten, lactose, yeast, sugar, caffeine and everything else you ever loved.”

Questions you can ask a new doctor.

Attending School – some strategies for coping with teachers and schoolwork.

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This article was originally published at Coping and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

I am looking for a new doctor at the moment, and this is a list that I compiled before I started:

Medical Questions For A New Doctor

• What are your primary treatment methods for PWCs?
• Do you know about the Johns Hopkins research into NMH? Are you willing to test for and treat NMH?
• Do you test for/treat food allergies and intolerances? What sort of allergy testing to do you use? Do you know about the Ainslie in-patient allergy testing unit?
• Do you use IV vitamins at all? If so, can I arrange to have them done here?
• If I read about new research or new treatments on the Internet, or in books, will you be willing to read about these and discuss them if I bring print-outs in to my appointment?
• Will you communicate with other members of my medical team, such as a psychologist, physiotherapist, osteopath, homeopath, etc?

Technical Questions For A New Doctor

Questions about ‘technical’ stuff which the secretary or receptionist can probably answer:

• What hours are you available here? What hours are you available but at other office(s)?
• Are you likely to be running late on a regular basis? (My last doctor could be expected to be at least 2 hours late by lunch time every day!)
• How far in advance do I need to make an appointment to see you?
• If I’ve got a problem (say a drug reaction, or a sudden crash) can I call up and speak to you, or have you call me back within a reasonable time frame?
• How much do the appointments cost? Are there discounts for pensioners (like me)?
• What are the arrangements for after-hours consultations if they become necessary?

Please feel free to print out this list and take it with you when you’re seeing a new doctor!

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• No dairy (that’s milk, cream, cheese, yoghurt, etc.)
• No yeast (bread, among other things)
• No gluten (that’s wheat, oats, rye and barley)
• No caffeine (tea, coffee, cola, chocolate)
• No eggs
• No MSG (lots of Asian food, plus things like stock cubes, savoury crackers)
• No preservatives (smallgoods, sausages, lots of stuff…)
• Only minimal amounts of sugar and fats

Now, that sounds pretty bad, doesn’t it!! For me, it only reduced about 10% of my aches and pains, but it cured about 2/3 of my severe gastric symptoms (nausea and stuff) and helped a lot with mood swings. Given that – at the time – it was almost the only thing I’d ever found that helped, I thought it was great! It took some getting used to, and I was lucky to have my family around to help me. Since then, at various times I’ve had to restrict various other things in my diet. At some points I’ve been able to eat absolutely anything I want, other times the restrictions have been very onerous.

So by now I’ve had a lot of experience with medically prescribed food restrictions. I’ve developed a list of things that I try to always do when I get new restrictions. These things help me to figure out what I can and can’t eat, and arrange things so it’s actually feasible to stick to the limitations without feeling like I’m in food-prison. Here’s my list:

1. Know exactly why you’re doing this. Make a list of the symptoms that are helped when you eat right, how much of a difference it makes you feel. It’s really important to be motivated or you’ll just eat whatever, but getting motivated to eat ‘weird stuff’ can be a challenge! Read your list whenever you need reminding (stick it on the wall?)
2. Get an ‘allergy-free’ recipe book or another comprehensive source that’s relevant to your food limitations and read through it to start the ideas flowing. You can also visit websites such as http://www.FoodYouCanEat.com/ which have recipes tailored to different allergies on them. This will help you to right away build up a list of recipes that don’t contain foods you can’t eat.
3. Go and talk to a nutritionist or dietician, a health food shop person or a friend with allergies about alternatives to things you can’t eat. Websites such as http://www.FoodYouCanEat.com/ may also have lists of these.
4. If you like cooking, then ask about different sort of flours and alternatives to other basic ingredients you can’t have. You can get gluten-free wheat flower, rice flour, buckwheat flour and all sorts of other “weird” stuff which will help you cook.
5. Sit down with a bit of paper (or your computer), the recipe books and websites and all your other resources. Put on your imagination hat and write a list of ever single meal or food you can think of that you CAN eat! Things that I thought of for the set of restrictions above, for example, included:
   • Rice bubbles with rice-milk on them for breakfast
   • Corn-bread toast
   • Corn-pasta with tomato-based sauce
   • Just about any sort of stir-fry
   • Vegetarian lasagne with corn-pasta sheets
   • Most sorts of BBQs
   • Kebabs
   • Salads with homemade dressing
   • Muffins, pancakes, pikelets and biscuits that I’ve made
   • Fruit salad
   • Homemade jelly (that’s American Jello) for specials (it’s got lots of sugar but not much else)…
6. Make sure your list includes alternatives for your comfort foods, and quick snacks that you can keep around. If you’re feeling grumpy/upset or hungry you’re more likely to make bad decisions about what to eat. Help yourself to make good decisions at those times by having thought ahead.
7. As much as possible given your living situation, remove temptations (foods you can’t eat, especially ones you really like) from the house or at least from the kitchen. If you have a family this may not be possible, but even a little bit will help you – obviously I couldn’t expect a family to stick with me on a diet like the one above but they might be able to share some of the restrictions without much hardship. If you’re the family’s cook then you can make meals where some parts are shared and you just make yourself an alternative for parts of the meal you can’t eat with them. If you live with just 1-2 other people they may be willing to share the restrictions, especially if they’re not hugely onerous. Ask!
8. Recruit your family or whoever you’re living with to support you. Make sure they know your limitations (I keep mine on a list on the front of the fridge) and what benefits you get from sticking to the diet. Ask them to support you in eating right. If you want to, you can also ask them to call you on it if they spot you eating something you shouldn’t be eating. Ask them if they’d be willing to try any new meals or alternatives to old favourites that you’ve thought up. Ask them if they have any ideas for more things to go on your lists.
9. Find a support group of people who are on the same or a similar limited diet. On the internet now, this is much easier than previously! Just put the name of your restriction into Google and see what comes up. Being able to share your woes and brainwaves and cooking failures and successes with people going through the same thing can really be helpful for motivation.

For me it was definitely worth sticking to the diet from 1996. If I ate something that wasn’t on it (say, a slice of pizza) then I was guaranteed to get mood swings, stomach cramps and the rest of the CFS symptoms would get worse also. Of course I fell off sometimes and eat stuff (like that pizza!), but the nice thing about this sort of diet is you haven’t lost anything by stopping. You can just pick up again and you start feeling better again.

I found that the ‘make a list of things you CAN eat and put it somewhere that you see it often (like the fridge door!)’ part was very important. When you first start you keep feeling ‘argh, I can’t eat ANYTHING!’ which isn’t true, and having some reminder of all the stuff you CAN eat is important.

The other most important thing is that once you’ve found stuff you can eat, make sure they’re easily available in the house… otherwise it’s too tempting to eat something that is easily available!

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This article was originally published at Coping With Medical Diets and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

These suggestions were originally submitted by readers of the OzME mailing list, others have been added over time:

The worst part of CFIDS for me is the loneliness. I’m 29 and I’m as inactive as my ailing 84 yr. old grandmother. I can’t work or go out like I used to, and my husband left me (which is actually a blessing) last year after I got the prognosis from my doctor.

I have great friends who have stuck by me through thick and thin, and for them I’m grateful. When I have the strength, I go out with them, but I can’t go out when I’m in bed 23 3/4 hours a day! It’s hell being in bed, day after day. So, I’m making a plan of attack to deal that special lonely feeling when you feel too sick to get dressed but wish for someone to lay on the couch with you and hold your hand.

• Get on the Internet and go to one of the chat rooms. Become e-mail pen pals with people from different countries.
• Set up a local CFIDS phone network and call other CFS-ers who are also stuck at home and by themselves.
• Have a volunteer from church or synagogue visit and spend a few hours.
• Invite a friend over to watch a movie. It’s hard to have more than one person over at once because it’s too overwhelming when I’m really bad off.

Suggestions from Amanda Baggs:

Make an “I’m not alone” book. Print out or photocopy articles, stories, pictures, or emails, that make you feel less alone. Examples include letters from friends, articles by other PWCs, articles by other people who think like you do or understand you, and so on.

If you’ve got in-person friends, you might even be able to get them to put messages on an audio or video tape for you, so that you can replay it and know that people know you and care about you. For the printed things, you can stick them in a binder or folder that you keep near your bed or couch, or wherever you hang out when you can’t get around much.

Then, when you feel like nobody understands and you’re completely alone, you can pick up the book and see that you’re not. Even if your attention span is fried and you can’t read it, just the knowledge that there are things in it that show you’re not alone, can help.

These suggestions about being lonely were contributed anonymously:

I write – diaries, fiction whatever. I unleash the feelings that I normally would use with others, onto paper. I keep a notepad by me in bed because I’m always thinking of things to do (not that I do them all) and things to write up in the diary.

I listen to talk-back radio.

I read short real life stories – short enough so I won’t lose concentration (2 magazine pages maximum).

Additions to this page are welcomed! If you have any tips for coping with with being lonely, please contact me or leave a comment below so I can add them.

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A plastic chair or stool so you can sit down in the shower is easily obtained from pretty much anywhere. You can get “official” shower chairs and stools from a medical supply store or rehabilitation centre, but these cost a lot and really aren’t that different from any plastic chair. Metal is okay as long as it’s painted or sealed so it won’t rust. Make sure you chair or stool has rubber stoppers on all its feet so it doesn’t slip in the shower, too.

A shower chair is useful even if you can physically stand in the shower. After all, wouldn’t you rather use all that energy for something fun, instead of for standing up?

Electric toothbrush

Any electric toothbrush from your local shop will do, my
dentist informs me. Electric toothbrushes are a life-saver if
your arms get tired quickly or you have muscle weakness and
pain.

My dentist, after hearing my problems with tooth cleaning,
also prescribed a special high-fluoride toothpaste which helps
prevent cavities if you’re too sick to brush often. This might
be worth asking a dentist about if you’re in a similar
situation.

Pill Box

A pill box marked off with sections for each day of the week and each time of the day you need to take pills can be invaluable. These are especially useful if you suffer from brain-fog and sometimes can’t remember if you’ve taken pills. They also mean that for most of the week you can just tip out the right pills and take them without having to remember which ones to count out or how many.

I suggest you keep a written down list of what pills you take when, to aid in refilling the container. And a hot tip: If you have to take a powder or liquid or something else that you can’t put into the pill-box, put a button in the appropriate box to alert you of, “something special”. Just make sure you don’t swallow the button!

Heating Pad

A heating pad, hot water bottle, hot pack or wheat bag can all help with those sore tired muscles. They can also help with morning stiffness, if used along with judicious stretches.

Also good for keeping warm on cold nights!

Walking Stick

No, not to lean on!

Well, not just for leaning on. Depending on how your arms are it may well be useful to lean on. The most important thing a walking stick can do is let people know you’re disabled! People with CFS and/or Fibromyalgia usually look pretty healthy, and it can be difficult to explain why a healthy-looking twenty-something isn’t getting up to offer their train seat to the mother with an armful of parcels … but if you have your trusty walking stick, you can just wave it around a bit and people understand at least that there’s “something wrong” with you.

Having Fibromyalgia/CFS is a pain in more places than one, but having an invisible disability doesn’t exempt you from finding gadgets useful.

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This article was originally published at Indispensible Gadgets For Those With Fibro/CFS and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.