Surviving severe me

Christmases are a strange time when you are a severely affected, everyone gets so excited that you feel compelled to join in; but when you’re feeling ill and are unable to take part in the ‘normal’ activities it can feel like a let down.

I’ve had Christmases when I’m barely aware of who I am, let alone what date it is and looking back it makes me sad; but that’s why the years I am up to having some fun, I make sure I do.

It is possible to tailor Christmas to you. No, it won’t be like other years, no you won’t do all the things you want to; but yes you can still enjoy the festive period.

When you were little didn’t you wish Christmas could last forever? Well now it can – okay maybe not forever; but I’ve had Christmas last till the end of March when my birthday took over.

Most importantly decorate your room, if you’re up to it you can make your own decorations like paper chains and cutting out Christmas shapes from card and decorating them then hanging them up with cotton. If not you can buy lots of lovely decorations even through mail order catalogues like Ace. If you have problems with sparkly things look for matt colours. There’s no reason why you have to take the decorations down in January – with all the effort of putting them up I’ve left the for months if not all year.

Every Christmas should have a tree and you can now buy a wide variety of mini trees, from real to fibre-optic – and check out Ace or www.24ace.co.uk or get someone to visit Homebase or B&Q. Put presents under the tree so you can enjoy looking at them.

Presents can take a huge amount of energy to unwrap; you can get someone else to open them for you (siblings love this). This can be embarrassing to explain to friends and distant family who want to watch you open their gifts - get someone who does understand to talk to them beforehand or just be blunt - you get some strange looks; but there’s no point struggling to open something then being too tired too even look at it, let alone say thank you!

Alternatively you can ask people to wrap presents in tissue paper tied with ribbon and no sellotape, or get them to leave the presents unwrapped; but inside a pretty bag or box.

Some good ideas for presents for severely affected people are: –

I had a large, pretty hatbox beside my bed with all my presents in, and I put my hand in and got one out when I was up to it. Remember to get someone to keep a note of who sent what if you want to send thank you letters- if you can’t remember or are too ill to write yourself, then a general letter is just as good, either dictate it to someone else, to write/type. You can decorate the hard copy with stickers or ink stamps and photocopy it to send out.

After opening the presents put any you don’t have space for back in your box to go through when you are feeling a bit better. I did this a few years after I got some presents and it was like getting them all over again because I had been too ill to remember them the first time round.

Christmas is a time for visitors, so the house will have extra noise - use earplugs to block it out and a ‘Do not disturb’ sign on your door. Only see people when you are up to it and only for as long as you can. See the Surviving Severe ME Booklet for tips on coping with visitors, page 25.

Christmas dinner - this can be very tricky, especially if you can’t swallow. Food can be pureed down; but if you can’t cope with the taste or smell, then try to have some of your favourite foods from your normal menu.

Remember rich foods take longer to digest and so uses more energy, you will probably need a good rest before and after you eat. If you have a small appetite then spread the food out over several days, say the turkey dinner one day, Christmas pudding the next and mince pies the day after that.

If you can’t normally sit at the table, don’t force yourself to at Christmas - the repercussions aren’t worth it. If you can sit in a chair for a little while then maybe join everyone for the starter or have a reclining garden chair so you can rest between eating.

If you’re bed-bound and can cope with some company get people to come up for a short time during the meal; but remember talking and eating takes energy, so pace yourself. My family came up for part of Christmas dinner last year and sat on folding chairs, using lap trays for their plates. What with balancing their food and precarious paper hats it made for some hilarity!

If you have any tips on coping with Christmas or good ideas for presents then email them to me at claire@meandmylife.me.uk

The rule of thumb with ME and Christmas is: take it easy; don’t do anything you don’t feel up to and pace yourself. Why fit all the fun into one day when you can make it last. For more ideas on making Christmas special see the Birthdays adn Christmases Section.

If you aren’t well enough to enjoy or take part in Christmas don’t feel bad, one year you can make up for all the missed Christmases.

Lighting a candle can be nice way to connect with other severely affected people. It’s important to remember that you are not alone, there are other people going through exactly what you are, no matter how isolated you feel. It can be extremely frustrating and upsetting especially being surrounded by ‘healthy’ and ‘energetic’ people; but you will get through it.

So look after yourselves and I wish you as happy a Christmas as possible.