The Hummingbirds' Foundation for M.E.

The single most important tip for living with M.E. is to avoid overexertion. This is just so important. There is nothing to be gained by pushing yourself to perform above your limits except unnecessary relapses and perhaps disease progression. Avoiding overexertion doesn't guarantee a quick recovery or any recovery at all, there are other factors at work too (luck mostly), but overdoing it physically is a sure way to ensure that you remain more severely ill and for longer than would otherwise have been the case.

 

Please see the Treating M.E. – Avoiding Overexertion page for more information.

 

See also the Health, Healing & Hummingbirds website and the Practical Tips pages on HFME for more information on a wide variety of important issues for those with M.E., particularly the newly diagnosed. These texts discuss how to:

 

• Make sure you have been correctly diagnosed with M.E. (and note that qualifying for a ‘CFS’ misdiagnosis does not mean that you have M.E. nor any distinct illness named ‘CFS’)
• Avoid overexertion
• Work towards learning to accept your illness
• Educate yourself (and those around you) about M.E. and seek appropriate support
• Try to find a knowledgeable doctor
• Modify your diet
• Modify your environment
• Look into useful treatments for M.E.
• Learn how to avoid inappropriate or harmful treatments and scams
• Avoid and minimise stress
• Learn strategies to help with the cognitive symptoms of M.E.
• Consider becoming involved in M.E. activism and advocacy

 

The Health, Healing & Hummingbirds website is an essential guide to some of the basics you NEED to know to live with, cope with and to treat M.E. (or to help your child with M.E. do the same).

I hope some of the following hints might be helpful, they are taken from various sources and also include many of my own. A list of references follows the list of tips.

Also, some hints and tips are tips are only suitable for the very severely ill while others are inappropriate for the severely ill and will only be useful for those with moderate or mild versions of the illness so you need to just take the ones that are useful for you and ignore the rest as not all tips will be suitable for everyone.

Beds and pillows

• If you're sore and achy all over in the morning and you have a bed that's more than 10 years old, the pain might not all be M.E. related. My morning pain levels were cut in half when I just got rid of my 15-year-old saggy bed! Worth a thought anyway. Old beds can REALLY hurt. Not everything is the (just nearly everything.) (HUMMINGBIRD)
• There are some kind of air mattresses with holes in it which you can just lay on your mattress. Such an air mattress is very comfortable, since then I have no/less pressure pain. There are pillows, also called body pillows. You can use these in many different ways like for back support and meantime as pillow between your knees and/or (depending on the size) to support your arms and shoulders etc. I use it to support my arms and shoulders, this way I lay more relaxed. They are with different fillings like sand, foam, hard or soft etc. My mom made mine herself with soft foam, because I hurt a lot. (INGEBORG)
• Having at least 3 layers on a bed lets you deal with the hot/cold/hot/cold thing somewhat easier. A sheet, then a thin blanket and then a thicker blanket or doona on top of the bed lets you throw off the heavier top layers if you don't need them (that minute!) (HUMMINGBIRD)

Bedroom

• If you've spent years in the same room, having a selection of vases, ornaments and pictures that you can rearrange every now and then really helps. Stops you going completely insane (if you're lucky). Repainting a wall or 2 with a different colour every now and then is great if you can get someone to do it as well. It really stops everything being quite so samey. Make sure you use a low VOC (volatile organic compound) paint though and choose a colour that wont be too overstimulating to look at all day. Colours really can affect your mood. Reducing clutter also really helps your brain feel somewhat less overstimulated. (HUMMINGBIRD)
• Avoid ionisers as they can produce dangerous gases as well as ions. (According to 'A Treatment Guide' by Verillo & Gellman). (HUMMINGBIRD)
• An air filter with a HEPA filter is a good idea if you have a big dust allergy. They're also meant to be able to remove mould spores as well and some even have carbon filters to remove chemicals from the air too to a certain extent. Just make sure you don't get a really noisy one! (HUMMINGBIRD)

Buzzers

• If you have trouble speaking on an intercom, you could work out codes: 1 beep means I am well enough to eat my lunch now while 2 beeps might mean something else. Working out an emergency signal is probably also a good idea. (HUMMINGBIRD)

Clothes

• Use a folding laundry rack which stands on the floor. Hanging the laundry above your head is often much too exhausting and with such a laundry rack you can even hang on your laundry while sitting. (INGEBORG)
• I find wearing shiny fabrics in bed helps me turn over just that bit easier. I am unable to turn myself at all if I wear flannelette or have flannelette sheets! The right fabric choice can sometimes just make the difference between being able to turn yourself or not - worth a try anyway! (HUMMINGBIRD)

Computer

• Get printed address labels if you can afford them. (HUMMINGBIRD)
• If you have NMH and are struggling to sit up to use a computer, get a laptop or notebook computer if you possibly can so you can use the computer lying down in bed. Sitting up is just a waste when you could so easily lie down. I've also found that the glare from the computer screen is greatly reduced on a laptop. You can get reconditioned laptops for not too much money. If you can afford it - do it! (HUMMINGBIRD)
• NEW!!!! I have finally found a stand that lets me use my laptop/notebook computer lying completely flat in bed! Click here for more information. It's brilliant. The stand isn't cheap but it might be well worth it if you find it difficult (or impossible) to have to use your computer in the upright position. (HUMMINGBIRD)
• Did you know that (in Windows XP etc.) you can adjust some of the settings on your computer to make it easier to use? Things like making the text or cursor bigger and even changing the size of your scroll bars (which I would *really* recommend) and lots more. Even if you aren't that disabled it just makes working on your computer that much less effort. To make changes, go into Start, then All Programs, then Accessories, then Accessibility - then just follow the prompts on the Accessibility Wizard. You can undo any changes you make by running the wizard again incidentally. (HUMMINGBIRD)
• Online support groups are a must and there are so many now online. You can't and shouldn't have to go through this alone. It can take a while sometimes to find a group that suits you, it helps if you have illness severity in common among other things and sometimes you might have to join more than one group to find the right one for you. (HUMMINGBIRD)
• Becoming educated about M.E. really is a must too if you are at all able. Understanding your symptoms lets you deal with them better and knowing a bit about the politics of the whole thing means you can argue your case better if you need to. You really need to be selective about what you read though - there's a whole lotta crap out there! Click here to read some book reviews of some really great M.E. books. (HUMMINGBIRD)
• If you can't sit behind the computer, print your emails and write your replies on paper and let someone type them and send them. If you have a laptop with no internet then use a disk to download your emails on and write also on this disk your email so someone then can put the emails on a computer with internet-connection and send them. (INGEBORG)
• I have a new computer system; a 19 inch TFT-monitor which is placed with an arm against the wall. The desktop is a few meters away in the tv cabinet. I use a trackball, you have them in different kinds and I have tried them all. The one I have now works best, the ball feels good and rolls real flexible and light. The keyboard I use is small and light, so light that even I can lift it! I turn on my pc by pushing the space-bar. With this system I am no longer dependent on other to use the computer (INGEBRG)
• If you have trouble with your vision I got the following tip from someone. You can adjust the font size on your computer to the size which is easy for you to read. I use this tip for several years now; it's so common for me that I don't see it as a tip anymore, but maybe some of you didn't know this tip yet. You can also adjust the screen of your computer (for example in word, outlook, excel etc) in for example a soft colour. White hurts my eyes and makes reading even more difficult. That's why I always have a soft window colour like soft yellow or soft grey. Of course it's also possible to get it in negative. I also got the following great tip from someone to disable all animated images and banners on all websites [which can cause huge problems in M.E.!!] => start Internet Explorer and Go to:
  - Extra
  - Internet Options
  - choose tab Advanced
  - scroll down to Multimedia
  - uncheck "play animations on web pages" (3rd option, it can have another name, I'm using the Dutch version of IE) (INGEBORG)
• I always loved making jigsaws, but since I am fully bedridden in 1998 isn't that possible for me anymore. You must be able to sit at a table or sit/lay on the floor. But now I have found a site where you can make jigsaws on your pc (online, but also offline). They have over 800 jigsaws and you can make each jigsaw in 32 different ways, for example easy 6 pieces or pieces in the shape of stars or lizards and even hard 247 pieces. If you want to make them offline you have to do it as follow: download the jigsaws you want to make, click each jigsaw down to your taskbar, leave your pc on when you want to make the jigsaws the next day. If you become a member you will get every day an e-mail with the link to the jigsaw of that day. They have really nice jigsaws, take a look at www.jigzone.com. (INGEBORG)

Drinking

• Put a jug or bottle with water in it next to you so you don't need to walk that often. If you have trouble holding for example a glass, get a bottle little children use, it's not as heavy as a glass. Or use a water bottle or a so-called camelback. [A bag of water which sits above you with a straw which comes down for you to drink from]Nowadays there are even special mugs with which you can lay completely flat on your back, so you even don't need to lift up your head a bit. (INGEBORG)
• I like to have 3 1.5 litre water bottles on one table, and 4 glasses of water on another closer one. It means my carers don't have to be getting me water all the time, they just refill the bottles every 2 or 3 days. It also means that when I (or someone else) pours me a glass of water they or I can pour 4 at once which saves effort as well as reduces the amount of time I have to hear water being poured!! (One of the WORST things ever for hyperacusis - it's the tone *shudder*) (HUMMINGBIRD)

Dust

• An air filter with a HEPA filter is a good idea if you have a big dust allergy. They're also meant to be able to remove mould spores as well and some even have carbon filters to remove chemicals from the air too to a certain extent. Just make sure you don't get a really noisy one! (HUMMINGBIRD)

Eating

• If you're using that line about "I've had to give up so much, I'm not giving up nice food as well" why not just TRY a healthier diet for a few weeks or months (taking out the processed food, preservatives, wheat and dairy, yeasty and mouldy foods, foods from the nightshade family, and the sugar and white flour for example). You might notice such an improvement it'd be worth it - feeling a bit better really does 'taste' so much better than mere food ever could! See Treating M.E. - The Basics for more information. (HUMMINGBIRD)
• If you have trouble swallowing food, mix it and do some soup with it so it's easier to swallow. This way you still get your vitamins and minerals.(INGEBORG)
• Always have a variety of foods at hand near your bed for emergencies; nuts, peanut paste and a spoon, protein bars, fruit - whatever you can handle. (HUMMINGBIRD)

Funerals

• Funerals can sometimes be arranged to be viewed over the internet on a live feed or via DVD if you can't make it in person. It is also good to talk to people who did go to the funeral if you can, get them to tell you in detail what it was like. (HUMMINGBIRD)

Hair

• If you can't shower and you don't have a bath but you want to wash your hair then lay down on bed with your head over the side. Lay some kind of plastic on the floor before the bed, put a big bucket before the bed and fill a small one with warm water. It's more comfortable if you lay on your belly; if you lay on your back you get cramp in your neck because of holding your head up, that's also why I can't let my hair wash in those inflatable hair wash basins for in bed. Lay a pillow underneath your chest with plastic over it so it can't get wet. Lie down on bed and let someone flush water over your head with a big jug or something, let her/him wash your hair and flush again water over your hair while hanging with your head above the big bucket. (INGEBORG)

Household

• At my bed I have a connector with power-points and an on/off-switch. In the connector sits 1 plug on which the 2 lights I have are connected. If I want the lights on I push the switch to 'on' (meaning power available), if I want them off I of course push the switch to 'off' (no power). With the heating I have the same problems as with the lights and beside that the control for the heating hangs too high for me to reach it from my wheelchair (this is also with the controls of the big lamps like the spots hanging down from the ceiling). This is solved with a bell thermostat and of course it has been put lower in wheelchair-height. The bell thermostat is now been put on 2 stand (it has a max. of 8 stands); the first stand is the time I usually just about awake and the 2nd stand is when I go to sleep, both of course with a different temperature. You can also operate the thermostat with the telephone or computer, but this has still to be sorted out for me. (INGEBORG)

Ironing

• Learn to live with wrinkled clothes - the ones you have from pre-illness, then ONLY buy things from then on that don't need ironing! I think even healthy people should do this - life is too short to be wasted ironing!!! (HUMMINGBIRD)

Light Sensitivity

• If you can't tolerate light very well, put on your sunglasses, this is also more relaxing when you watch TV. If you can't tolerate light at all, get an eye mask. (INGEBORG)

Memory

• If you have a M.E. affected brain, notebooks can be kind of like little spiral-bound external brains - if you don't use them already, get some!!! I have one beside my bed, 2 beside my daybed as well as 2 whiteboards and a few lists on the computer too. I do still forget lots of things but I wouldn't remember to do anything at all without them! (HUMMINGBIRD)
• Try to get into the habit of putting things back in the same place after you use them - even if it does make you look like a control freak to those around you - it really is the only way to remember where all your stuff is if you don't have a memory anymore. (HUMMINGBIRD)
• Get a pill box with at least enough compartments that it'll last you a week. Life is just too short to mess with pills more often than you have to! Mine last me for a fortnight, it's so much easier than doing all your meds one by one each day - you'll never go back! Monthly pill boxes are also available. (HUMMINGBIRD)

Neurally Mediated Hypotension

• You can get a wedge of foam custom cut at any custom foam shop to put under your legs and raise them up to help with NMH. They really help. Mine is 60cm x 60cm x 17cm. Make sure you get firm foam. (HUMMINGBIRD)
• Compression socks/stockings help with NMH too. (HUMMINGBIRD)
• If you have NMH and are struggling to sit up to use a computer, get a laptop or notebook computer if you possibly can so you can use the computer lying down in bed. Sitting up is just a waste when you could so easily lie down. I've also found that the glare from the computer screen is greatly reduced on a laptop. You can get reconditioned laptops for not too much money. If you can afford it - do it! (HUMMINGBIRD)
• I have finally found a stand that lets me use my laptop/notebook computer lying completely flat in bed! Click here for more information. It's brilliant. The stand isn't cheap but it might be well worth it if you find it difficult (or impossible) to have to use your computer in the upright position. (HUMMINGBIRD)

Noise Sensitivity or Hyperacusis

• Hyperacusis (severe noise sensitivity) is a huge problem for me (as you'll know if you've read my 'Day in the life of severe M.E.' and about the only thing I've found that helps is my noise-cancelling headset. It plays white noise - the sound you hear between songs when you listen to cassette tapes. They don't block out really loud noises but they do make a huge difference. They are pretty expensive but well worth it if your hyperacusis is really severe. I can't tolerate normal headphones or earplugs at all but these ones are very comfortable to wear. You can get them from www.bose.com and last time I looked they have a deal where you can try them for free at your home for 21 days. See also: www.sony.com They can also be attached to your Walkman or computer for really clear sounding music and double the noise blocking capabilities! If noise is very severe and the headset isn't blocking it all out (or you don't have one) playing music over the top of it can help. If you are really neurologically overstimulated and not well enough for normal music I find certain types of classical music can be much better tolerated. You need to make sure you get a CD of really slow and mellow ones though - no crashing cymbals and marching music! The other thing that's helped the hyperacusis is installing thick solid doors internally and externally and attaching rubber seals to them as well so that the room is kind of airtight. They block out quite a bit of the noise but of course, are fairly expensive as well so not for everybody. I also keep a small stereo with a remote control near my bed so that if I'm woken up by loud noise I can lessen the impact by putting the radio or a CD on straight away. Of course the noise is still there, but nicer noise over the top of it does seem to help the hyperacusis a little bit somehow. Plus, just knowing you have some option, some action to take when agonising noise hits, can help somehow too. Stops you feeling so powerless to the pain. (HUMMINGBIRD)
• If you can tolerate noise sometimes but no music, there are also relaxing-cd's without music with only rain for example. This is really relaxing, as far as you can relax. If you can't tolerate noise at all, you can try ear plugs. The earplugs I use now are so called swimming/water-earplugs which are being adjusted to your ear. They do it at home, at least they did with me. You first lye on 1 ear while they put some kind of liquid rubber into your ear. This has to harden before they can pull it out of your ear and then the other ear will be done. Normal swimming/water-earplugs are kind of small, but my earplugs also cover the ear-entrance. This way less sound can come in. You sometimes have to maintain the earplugs by putting them in a bit oil (olive oil for example), this way they don't dry out and don't break in 2 that easily. If you also use the earplugs when sleeping as I do, then ask for the softest rubber... the harder the rubber, the less comfy to lie on, but it may still take a while to get used to. (INGEBORG)
• I like to have 3 1.5 litre water bottles on one table, and 4 glasses of water on another closer one. It means my carers don't have to be getting me water all the time, they just refill the bottles every 2 or 3 days. It also means that when I (or someone else) pours me a glass of water they or I can pour 4 at once which saves effort as well as reduces the amount of time I have to hear water being poured!! (One of the WORST things ever for hyperacusis - it's the tone *shudder*) (HUMMINGBIRD)

Opticians

• See if you can find an optometrist that can test your eyes in your home. (HUMMINGBIRD)

Pacing and rest

• It is really important that if you get the flu on top of your M.E. that you rest. Even 'normal' people have had fatal heart attacks because they exercised/overexerted themselves while they had the flu. Those of us with pre-existing M.E. related heart problems may be at an even greater risk so if you have the flu, rest is not optional - do not exercise or exert yourself at all! Why take the risk? This whole marketing message we're continually being fed to 'take drugs and keep going through the flu' is just plain dangerous. (HUMMINGBIRD)

Pain

• Electric heat packs are BRILLIANT!! They are around half the size of a pillow and they are good for period pain, cold fevers, cold feet, pain and just for warming you up! They're also very handy for when it gets colder suddenly and you can't get up to get another blanket …and they just feel nice and any part of you feeling 'nice' when you have M.E. is pretty rare! I think they're a must have. (HUMMINGBIRD)

Pets

• A cat needs less cleaning and care and still you get attention, they love to lay on your bed beside you. (INGEBORG)

Shopping

• If you're trying to buy appliances or anything substantial over the phone or in person, don't forget to try to bargain (or get someone else to do it on your behalf if you can't). Very often they'll reduce the price by quite a lot, they want your business and are quite happy to reduce the price to get it if you just ask. I recently just saved 130$ on my air filter and 125$ on a new stereo just by asking!! I didn't even have to talk them into it or offer reasons - it really surprised me. Their advertised prices really aren't what they expect you to pay sometimes. It can't hurt to try. (HUMMINGBIRD)

Talking Books

• Lots of books are available in audio versions and many classic books are available in free audio versions. (HUMMINGBIRD)

Teeth

• Get an electric toothbrush! You may even be able to use it to brush your teeth lying down in bed or in the bath. (HUMMINGBIRD)

Telephone

• If you are able to telephone but you can't hold the phone for long, get a phone with intercom. (I have a Swatch telephone and if I want to call someone I lay the phone on my belly, the intercom stands further away because of the noise. With this phone you also can call internal if you have a second handset, so if you need help you can phone to someone downstairs. It is expensive, but really worth it. (INGEBORG)

Toilet

• There are urinals for women; you have them for sitting or standing use and you have them for lying down use only. (INGEBORG)

Vertigo

• If you can't close your eyes when you are resting because the room spins with vertigo, putting a wheat bag or something else heavy over your eyes can help. It not only blocks the light out, but the weight of it lets your body know where 'up' is so you can get some rest hopefully without having to hold onto the side of the bed to stop yourself falling off! (HUMMINGBIRD)

Writing

• A pencil always writes and costs less strength. If you really want or need to write with a pen choose a gelpen, these are more comfortable in your hand and write lighter. I have bought the so-called dr.grip-pen at Medifix (only Dutch) and I am really very happy with it. The pen is perfectly balanced, lightweight and soft in your hand and you just need to touch the paper and the pen already writes... you absolutely don't need to put any pressure. There are also special scissors which don't hurt you to use and which cost no/less strength', spring assisted scissors. (INGEBORG)

A second list of tips which deals with how to cope with M.E. emotionally is also available: Tips for coping with M.E. emotionally.

If you'd like to share some of your own tips please submit them by email

REFERENCES: HUMMINGBIRD: Tips written by Jodi Bassett of www.hfme.org INGEBORG: Tips taken from Ingeborg's M.E. Website 'Borg of Space'

I hope you have found a few things here that will help you in some way with living with M.E. Best wishes to you all in your battle with M.E.