From InterAction 103, published December 2019
This extract from Emily Collingridge’s brilliant book, Severe M.E.: a guide to living, offers advice on making festivities when you are severely affected by M.E.
Activities and special occasions
Every day of the year can be a challenge for a patient with severe M.E., but special occasions such as Christmas, birthdays, weddings or family get-togethers that once would have been a highlight can become the most challenging of them all.
These celebrations may seem like a dreaded nightmare instead of something to look forward to because you are not in a position to enjoy them in the same way that you could before.
The most important thing you can do to make such celebrations easier when you have severe M.E. is to forget about how you would have “partied” if healthy and to focus on new ways of having fun. It is a great opportunity to create new traditions and involving friends and family in the planning, where possible, can make the whole thing more entertaining.
The preparations for an event can be just as enjoyable as the event itself. Give lots of thought to exactly how you want to participate. It may be that you want to choose lots of decorations for your room for a birthday or help your child make Christmas decorations; you may want to select a poem or write a message for a family gathering.
Just remember to do everything early so that you are not worn out when the time comes for the actual celebration. (This could mean organising Christmas cards and presents in September; the shops are usually ready by then and so it shouldn’t matter!)
Don’t wait until the last minute to put up decorations; make the most of the opportunity to have something different to look at in your room. If you have children, they will also love this. For birthdays, treat yourself to helium balloons rather than just ordinary ones (a good shop is www.balloonmonkey.co.uk). Ebay (www.ebay.co.uk) always has lots of decorations on sale at bargain prices.
Remember that you don’t have to do everything in one go as you would have done when healthy.
You can wear special clothes on one day, have your Christmas meal or birthday cake on another day, see visitors on other days and then open presents when there is nothing else going on. Events can last days, weeks or even a couple of months. See it as a bonus to having severe M.E.! Children with disabled parents will find the extension of celebrations some compensation for life’s restrictions.
It can be depressing if you are not well enough to have the traditional celebratory food, but the most important thing is that you enjoy yourself; so just select an item of food that you really like. It’s just as good to celebrate Christmas with a chocolate sponge as it is a roast turkey!
In advance of the occasion, make sure that friends and family know that you won’t be able to open all your presents in one go so that they won’t expect instant thank yous – it takes the pressure off. Then lie back and enjoy your presents over whatever period of time feels comfortable for you. You might want to ask people to avoid wrapping with sellotape and to use tissue paper so that presents are easier to open or ask someone to sit with you and open them for you.
If you can’t open your eyes then guessing what the present is from a description and touch alone can be turned into a game. Ask someone to write a list of all the presents you receive so that you don’t have to rely on a poor memory to enjoy what you have been given!
Visitors and photographs
Don’t force yourself to have visitors if you are not well enough. You can use recordings via smartphone or dictaphone to share messages instead. If you do want to see someone, it can help to give the visit a purpose. For example, why not invite someone in just to look at one or two of your presents; then they will know they are expected to leave after that. See the box for more advice about visitors.
Photos are often a key part of any celebration, but they can be forgotten when you are ill. If you are well enough to cope with having your picture taken, make sure all happy occasions, however small, are photographed so that you have something nice to look back on. If you have been unable to attend someone’s party or wedding, perhaps you could take a photo of yourself on that day to give them so that they know you were thinking of them. Alternatively, you might like to invite them to visit you for a mini celebration after the event and have a photo taken together.
Patients with very severe M.E. have to consider carefully whether they are truly strong enough to cope with visitors and, if they are, just how long the visit should last. The answer to these questions is likely to depend on the visitor as some people are simply more tiring than others. Unfortunately, it is difficult to say to someone “I can’t see you because you make me more ill than X does.” Sometimes it is worth seeing a person for (literally) one minute so as not to cause any offence.
However, if you can’t have visitors then you can make it clear that it is not because you are not interested in them. If someone is coming to the house, why not write or record a message for them, and then get your carer to ask them to record a reply in a notebook or on dictaphone or smartphone.
If you do choose to see a visitor, ask your carer to prepare them for it in advance. They need to know that, if you have memory problems, you might not recognise them or recall important details about them; not to switch the light on if you are light sensitive; to talk softly but clearly; not to wear perfume if you are sensitive to smell; to sit quietly if you can’t cope with any conversation; not to move around; to be prepared to leave immediately an alarm goes off signalling that time is up (you may like to ask your carer to let you both know when the time is coming to an end so that your conversation can be drawn to a close) and so on. It is also helpful if your carer points out that when you are making an effort with a visitor you may not seem as ill as you do normally.
It can be worth asking visitors, especially during the winter months, to wash their hands with anti-bacterial gel before entering your bedroom so as to minimise the risk of bringing germs into your living area.
Patients with severe M.E. can become very poorly indeed if they catch a virus. When this is explained to visitors, few will complain about using the gel (available from pharmacies).
Order your copy of Severe M.E.: a guide to living (£5.99 full price, £3 for anyone severely affected) from the Action for M.E. shop.