Published in InterAction 72, Summer 2010
Catherine Saunders is a 44 year old ex marketing consultant who lost a decade of her life to severe M.E. but is now 90% recovered. She has spent the last two years writing a personal guide to severe M.E. for family and friends.
Severe M.E. may not be a terminal illness, but it takes people’s lives; I know, because it took mine for several years. For two years I was a breathing corpse. For 15 months I never saw daylight, so severe was my light sensitivity. All I could do was lie in a blacked out room in constant pain, unable to talk, walk or sit up, having to be fed, watered, washed, and dressed, just like a baby.
I promised myself that, once recovered, I would do all I could to help family and friends of people with severe M.E. understand what it is that their loved one is going through, what patients and carers have to battle against every day, and how their understanding, compassion and support can make a dramatic difference to the recovery of a person with severe M.E.
Lack of understanding is stressful for all people with M.E., but for people with severe M.E. who have even less energy to waste on justifying their illness to friends and family, removing that source of stress can be the deciding factor between a person with severe M.E. recovering or not.
The information pack I have written is divided into 11 chapters that explain the different levels of severe M.E., its triggers and symptoms, how long it lasts and how it is managed. One chapter includes 10 pages of tables detailing how severe M.E. affects every aspect of daily life – not for just a few weeks, or a few months, but for years. If family and friends want to really understand what people with severe M.E endure day in, day out, 24/7, these tables need to be studied.
All activities that normal people take for granted are ripped from the lives of people with severe M.E. Bedpans, catheters, tube-feeding, paralysis, constant pain, muscle spasms: all these become part of a person with severe M.E.’s daily nightmare.
I was unable to walk eight paces to our toilet for two years. I was too ill to be showered or bathed for three years. I was spoon-fed for over a year. Dizziness, blackouts, joint pain, muscle spasms, brain fog, sickening migraines, hypoglycemic attacks, insomnia, light and noise sensitivity were my daily companions. Reading, writing, television, radio and the computer were impossible for nearly three years. I had to communicate through blinking my eyes, the only part of my body that I could move some days... my life was hell on earth.
How can family and friends help?
I cannot stress enough just how much difference proper support can make to the recovery of a person with severe M.E. My husband and I were incredibly lucky to have the support of so many of our relatives and friends without whom my recovery would not have been possible. Two chapters of the information pack are devoted to practical and emotional ways that friends and family can support someone with severe M.E. and their carer(s). The following extract is taken from these chapters:
“The virtual disappearance of your loved one from your life will be a huge loss, and your sadness, grief and frustration will be immense. But remember that this is not about you or your loss; this is about them. This is where you have to put their needs and those of their carer first – they have nothing to give, so your support must be 100% unconditional.
Make sure that they know that they have done absolutely nothing wrong. Severe M.E. is not their fault.
Avoid “Get well soon”. Of course, that is what everyone wants to happen, none more so than the person with severe M.E., but be realistic; instead say something like: “You will get better, in your own time, when your body is ready, just take it one day at a time.”
If they are too ill to receive visitors, do not take it personally. The person with severe M.E. longs to see you, but if a 5 minute visit makes them more exhausted and in even more pain, then don’t hassle the carer who has told you they are not up to visits yet.
Don’t stop writing to your friend or relative just because you hear that he/ she is too ill to read. People with severe M.E. are not telepathic, they will not know if you are thinking about them unless you tell them! My husband would always tell me when someone had sent me a card, note or e-mail; I would place it under my pillow – it felt nice to be close to the person who had taken the trouble to keep writing to me, it gave me a lot of strength.
Don’t drone on about what worked for your friend’s moderately affected second-cousin-twice-removed, or for the person you read about in the newspaper, who was ill for a few months with very mild M.E. then, Bob’s your uncle, fully recovered – it is NOT helpful. Each person with M.E. is unique and the recovery process for severe M.E. is different from that of mild/moderate M.E.
When a person with M.E. starts to make progress, congratulate them on every single, tiny step they take, literally! Encouragement made a big difference to my recovery; when you manage to stand for five seconds, or lift one spoonful of food, or write one character of the alphabet, or walk five paces, it is easy to feel daunted by how much you have to rebuild. But it helps when someone makes a big deal about the progress, because it is a big deal.
When they are strong enough to see you, do not talk at a million miles per hour – their brain function will take time to recover properly, so talk gently at a relaxed rate and likewise do not crash down on the bed – their muscles/ joints are painful and jolts hurt them.
Don’t be upset if the person with M.E or their carer asks you to leave during a visit. They have probably spotted warning signals from their body/brain and need to rest – it’s nothing personal, it is just that their precious energy stores run down very quickly. Indeed, why not ask the carer to explain to you what warning signs you should be watching out for, eg. face drains of colour, eyes become fixed/dazed, limbs jerk/twitch, slurred speech or getting confused.
Gifts are nice but do check with the carer as to what would be a useful gift as people with severe M.E. have loads of sensitivities. Try and think outside the box. Turning up with piles of books, magazines, DVDs and milk chocolates under your arm is not much use if the person is light sensitive, can’t read or watch TV and is dairy intolerant.
Talk to the carer about suitable presents, eg. toiletries, pyjamas, socks. If the person with severe M.E. cannot talk, but can tolerate a little light in their room, make a chart with letters of the alphabet that they can use to communicate. Or a chart with phrases on eg. toilet, hungry, thirsty, pain in arms, pain in legs, cold, hot, scared, need hug, etc.
Support for carers
It is vital to the recovery of anyone with severe M.E. that family and friends remember to support their carer(s) too, both practically and emotionally. Without the carer’s constant help, a person with severe M.E. has minimal chance of regaining their health. So here are a few examples from the pack on how to assist them:
Looking after a person with severe M.E. is exhausting, stressful and utterly draining, so one of the best ways to help carers is to give them a break, even if only for an hour, so they could get out for some fresh air or to grab a coffee; or perhaps an evening so they could go out for dinner. Maybe a few of you could set up some kind of rota.
Think of all the household chores that a carer would appreciate some help with. Again, maybe you could organise a rota with some other relatives/friends to help out.
Carers of people with severe M.E. go through hell, but often keep the harsh realities of what they have to cope with on a daily basis locked away deep inside, telling everyone that “they are fine”. Carers are never “fine”, so do try and get through to them that you are there for them too. Tell them often that they can lean on your shoulder any time, that you are happy to listen to them offload whenever they need to.”
Understanding is perhaps one of the greatest gifts friends and family can give to people with severe M.E. If my information pack prevents just one person with severe M.E. or their carer from wasting scarce energy having to explain their illness, then I will have achieved my goal. People with severe M.E. can recover, and we do recover, given the right advice, the right treatments and the right support, at the right time.
As Catherine says in the introduction to the booklet she has produced, she has no medical training, only her personal experience of having severe M.E. Her booklet is intended only for guidance and information purposes; it is not intended to replace sound medical advice. The use of any information is entirely at the user’s own risk.
To obtain a copy of Catherine’s publication, e-mail for an order form, or send a cheque for £11.95 (£10 plus £1.95 P&P) made payable to A DUTTON, to USME Information Packs, 16 Malton Road, Heaton Moor, Cheshire SK4 4DE, with your name and address. 25% of net profits will be donated to M.E. charities including Action for M.E.
View a pdf of this article.