Help with Letter Project, CHRISTMAS FOR MOST PEOPLE WITH M.E.

[drjohn]

PERMISSION TO FORWARD AND RE-POST ANYWHERE

In the next day or two, I am going to submit a letter for publication about what a trial Christmas is for most people and much worse for M.E. sufferers. If you are one of the lucky ones who enjoy Christmas and can manage it without suffering you need not read on.

Amongst the themes will be "But, I didn't like to say.." that is, not offending people and traditions of sending gifts and cards when you can't afford the money and energy to get them. I shall suggest that if friends and family know how much it can hurt, they get in first and demand that health comes before Christmas and make sure the Person with M.E. is well looked after. The best thing is probably to ask them: what do YOU want - and then do it.

I will include uncomfortable examples of visitors turning up, sometimes uninvited and the potential embarrassment of a dirty, cold, house, with nothing to offer, not because of laziness but inability and poverty and I will mention the hidden consequences of overdoing it, having been pushed into it, when healthy people are back at work and don't see it. I will include examples of being pressured into attending parties and then being left stranded, feeling ill, without a lift home, Those of you who have lived with this year after year will know exactly what I mean. And if you are a person who does find it awkward to tell a family member or friend -- you've got me.

If you want do to contribute (and I won't breathe a word it was you if you don't want me to!), send a sentence or two to me drjohngreensmith@mefreeforall.org
If anyone does want to shout it out loud, I will credit you by name with your idea by name and if anyone has a bit more energy to help me, we may assemble them all in a place and also make links to other websites where I know they already have tips for Christmas.
If you want those links to yours, remind me where they are.

Do it NOW before the Easter Eggs are in the shops ... Oops, too late.

Cheers
John
drjohngreensmith@mefreeforall.org
ME Free for All.org

 

[Sasha]

Interesting project!

I love Xmas (perhaps I am not your target audience!) and have always spent it at my parents' home (I was confined to bed there for several years at one point). This year is the first year I can't be there; I live hundreds of miles away now and am too ill to travel, even lying down in the back of a car. So the family is visiting me - rather galling to have it driven home quite so hard that my 79 year old, pacemakered mother is easily more physically capable than I am, as she has been any time this past 25 years of my illness.

My Xmas tip, if you're spending Xmas with people, is to tell them how much time you can cope with spending with them at any time (for me it's something like 30-45 mins at a go). My family, fortunately, are completely accepting of my limits; my problem is forcing myself to stick with them.

I can't prepare a meal for them or anything like that but I'm going to plan a treasure hunt around my local streets to send them out on. Fun for me to plan in a leisurely manner over the next few weeks, fun for them to do, gives me a chance to rest up while they're out. It will just be an easy thing - I'll give them a photocopy of a local map and direct them to go down certain streets with clues like "on X Street, when was the bank built?" (the date is carved on the building). If they answer the questions correctly (or even if they don't, frankly) they get a silly, cheap but fun present at the end.

Sorry, John, I have gone off on a "Xmas tips" tangent! But I agree with you that, like with anything ME, coping with Xmas is a matter of adaptation, pacing, and honesty with people about our limitations.

 

[Hope123]

My suggestion is to move this to the advocacy forum to get more responses possibly. Also, I'd put some urgency in the title of the thread to let people know you want a response in a day or 2.