crMEtea members’ tips for living with ME

These are things which various of our members have found helpful in managing to cope with their ME.  All views expressed are personal ones of individual members.

Of course, it is up to the viewer to assess particular ideas for themselves and these tips do not in any way constitute advice, medical or otherwise.

The suggestions below are to do with day-to-day management of ME. 

Keep a single sheet summary of your illness and medications taken
It makes it much easier to see trends and predict good and bad times of year.

Take advantage of free library services for disabled
You can tell the library that you are housebound (or have limited mobility) and get disabled access. There are no fines, the default loan period is three months (which can be extended easily by renewing online), I think DVDs might also have no cost. You can browse all the libraries in the county and have books delivered to your local library (including the travelling library vans) for no cost. Or you can have them brought to your door by a volunteer service – who will also get to know you and browse on your behalf if ordering is too difficult.  (To qualify, they asked me for a note from my GP which cost £30, but I’m sure the cost could be pointed out to them and sorted out. But the service has saved me £100s in amazon orders. Browse their catalogue at https://cambridgeshire.spydus.co.uk/

Feel useful doing citizen science
I found being housebound and unemployed means I find it hard to feel I’m “contributing something” to the world. www.zooniverse.org run a number of “citizen science” projects where you can make a real difference to a science project with limited/short bursts of energy. Options vary from clicking on photos of penguins to help monitor populations, saying whether a galaxy is a spiral or a disc or transcribing weather in ships’ logs to help build data on the climate. Each activity has full training information (usually just a few pictures of “click on this, tell us about that”). And you can save favourite images, discuss puzzling things on the forum and possibly get a discovery named after you if you’re the first to spot it! A number of people do each image, so if you make mistakes they will be corrected too.

Webcams rather than TV for low energy days
For times when TV is too difficult/overwhelming, there are numerous webcams around the world you can watch. E.g. on www.earthcam.com/ there are links to watch webcams. It doesn’t need much bandwidth (certainly less than 2Mb). I have watched the northern lights live in Alaska, joined in polar bear safaris, reported animals spotted at a waterhole in south Africa, and watched sunrise over the beach in the Bahamas. It is also oddly therapeutic watching red buses go around Trafalgar Square too.

Virtual Holiday
Holidays I worry I will never be able to take, I have imagined. I dedicate a day to the holiday. Plan the trip using travel agent brochures. I find assigning an hour to each day in the brochure works well. And for each hour, I look up photos/descriptions of that place and imagine I’m there. On a trip to Egypt I cranked up the house heating, sat in holiday clothes and enjoyed holiday themed foods as I browsed other people’s photos of the pyramids, the temples, the boat trip (taken in the bath :) It is still a stand out day in my memory.

Instant but healthy meals
Frozen vegetables come in bags of about 1kg for about £1, and microwave from frozen to cooked in 5 minutes.
Add to tomato or chicken cuppa soup or tinned soup to make a bigger, more nutritious meal with very little effort or cost.

Optimise activity while avoiding crashes.
Keep muscles working as much as possible within the obvious limits. I use pacing based on my current level of my energy and pain levels. Everyone is different and we know best about our own abilities, when we can push things a bit further and when to ease up.

Do the most important/difficult/crucial tasks during your own best ‘energy window’.  For me it’s that’s often about one hour in the morning.  It may only be having a shower, or making a phone call, or starting to preparing a meal.  It’s something, even if it is all you can manage for that day!

Plan in advance, and then do a little towards cooking an evening meal throughout the day. Sit down to chop vegetables etc, and take lots of breaks.  Someone else may need to finish off the meal, but at least we may be able to contribute on some days.  On bad days – instant meals!

For Fibromyalgia limb massage may help – I find it painful but overall it eases the stiffness a little and for me it’s worth it for some slight relief for a while. If you find massage helpful, an electric sports massager can be useful when you are on your own.

Using your own resources to help manage your pain and stiffness. Relaxation exercises can help one cope with the only too real pain of ME and Fibromyalgia. Yoga too can help keep some flexibility. But all such self-help activity will of course only be possible if and when your daily energy levels allow you to add it in to your schedule.

Weak hands? There are a number of devices on the market to open jars if you find this difficult, but if you can’t find anything else, try putting a rubber band around the lid to us as a grip for turning!  A small hand-strengthening grip device can be used to improve the strength in weak hands – practice little and often.

A peddle-assist bike if you need to get around locally but can’t drive.  Easier than regular cycling,  but remember to charge the bike up before you set off!

A reclining chair and foot-stool. If you find sitting up in a chair too difficult, but don’t want to lie in bed all day and night, a reclining chair allows you to lie back in a half-reclined position. This might allow you to move out of the bedroom in the daytime even if not feeling well.

Join a local or online support group. 

Take each day, one at a time. 

Have things in the diary to look forward to (as well as time to recover).

The suggestions below tackle the social and political side of ME. which can still have an emotional effect on us day-to-day!
It is an extra burden to have one’s illness misunderstood and misrepresented. The following comments refer to such day-to-day annoyances.

If you’re feeling down about the misrepresentation of ME…
If you have the blues because your illness is being maligned, dismissed or misrepresented:
One possibility is to challenge the incorrect understanding of your illness. Explain what it is like. You might want to ask where a particular person’s knowledge of M.E. comes from, and if necessary point them to better sources of reputable and up-to-date information.

If there is nothing you can easily do to combat misperceptions, it’s probably best to try and forget insults or ignorance – It’s not worth your time. It’s more important to stay positive :)

Cheer yourself up when in the face of adversity by checking out the work of some real M.E. heros!  For me these are those scientists who work on ME in relation to biomedical research in order to understand the physical causes and find appropriate treatments for our illness!

Had a less than helpful suggestion to cure your ME?
Had unsolicited advice about your ME which indicates a lack of understanding of your illness (which to be fair, may be based on the media portrayal of ME)?

Try offering advice in return for your companion’s own ailments (don’t be mean though – they are most likely trying to genuinely help!) as a way of introducing a discussion on how upsetting it is to have any illness misunderstood and misrepresented.
…a cold?   “A mantra could help”.
… a broken leg?   “A good run in the morning never does any harm.”
… stomach bug?   A cheery “Well you look alright” could really brighten their life!

If this does spark a conversation, you might consider how misinformation enters and stays in the public domain:
Where do journalists find their sources of information?
Why and how does this persist and spread, when there is more accurate and up-to-date information readily available from reputable sources?
Why is the misinformation harmful?
Are there real-world repercussions from false perceptions, and misinformation!

You might explain what those repercussions are in the case of ME, and how it can have extremely serious consequences for the ME community.

As a side note: In a situation where there is apparent wilful blindness within organisations (who could and should know better) it can be enlightening to ‘follow the money’ and the power.  Does any corporate body or organisation benefit in any way from the continuance of the mis-information? Always an interesting question to consider!

We hope you have found our hints and tips of interest!