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M.E. and surviving Christmas

by franpal @ 17 Dec. 2007 - 19:18:20

It's been a while, I know :) But here at long last is another contribution to this blog dedicated to giving information, support and advice about the condition M.E.

M.E. and surviving Christmas

Christmas should be a time for celebration (whatever your beliefs), relaxation and whiling away the hours in good company, with a bottle in one hand. It is more likely, for most, to be a time of stress, exhaustion and catching forty winks when all around you have passed out. Add M.E. into the equation and you have an already ‘worn out’ body trying to do more than is humanly possible all for the sake of a few days of festivities, which most people will have little, if any, memory of.

I remember one Christmas, back in the early days of my M.E. when I literally thought my head would explode because the pain in my sinuses was that severe! I had never felt anything like it and just wanted to bury my head under the duvet until January 2nd. Of course, I didn’t because you seldom get away with ‘hiding’ over Christmas.

Another year I was sat at the Christmas dinner table between two family members who kept my glass constantly topped with red wine and by 5pm I was rolled up in my duvet, by the radiator sleeping like a baby. You try to join in and yes, at times you really enjoy yourself, but Christmas, like any other period of exertion, leaves its legacy: decline, downturn, relapse.

Call it what you wish, and it will depend on your current state of health, but generally you’ll all agree that it is impossible to ‘do’ Christmas without spending the first quarter of the New Year (at least) getting yourself back to a more manageable state of health.

And so I present to you this: a light-hearted guide to surviving Christmas:

Buying presents

The problem…

Anyone who thinks that the stresses and strains of Christmas begin on Christmas Eve is sorely mistaken, or male. The whole thing starts somewhere around the end of November when you suddenly realise that the festivities are only a month away and you haven’t written your Christmas list, let alone visited a shop and purchased anything that remotely resembles a present.

And then there’s Christmas cards. Before you’ve even bought or wrapped a present, cards must be sent far and wide to your near and dear, all prior to Mr Postman knocking off for sherry and mince pies. It’s a daunting task to remember daily duties when you have M.E. and the extra chores of Christmas only increase the pressure you’re under, to the point where omitting Great Aunt Sylvia’s Next Door Neighbour’s Cat from your Christmas card list suddenly makes you feel like a failure.

The solution…

The internet – get connected, get surfing and get Christmas to come to you!

Decking the Halls

The problem…

It wouldn’t be Christmas without glitzy decorations and flashing fairy lights adorning every window, but there is a price to pay - apart from the electricity bill - your health. First you have to locate the stuff from the deep dark depths of storage hell – your loft, then you must hang it somewhere in a stylish-enough fashion so it doesn’t look as though the Christmas fairy tripped up on the way down the stairs and dropped her spoils carelessly all over your house.

The solution…

Go for the minimalist look. Get the partner and kids to help – they’ll probably enjoy it anyway. If you are particularly sensitive to bright lights opt for something subtle.

Festive food and drink

The problem…

Let’s be honest here, Christmas food and drink does little to aid the digestion of an M.E. sufferer, many of whom will experience IBS and migraines on top of the usual aches, pains and fatigue. You can abstain completely and feel as bad as usual with the added misery of being a killjoy, or you can join in as if you are as fit as the next person and be well and truly en route for a relapse come New Year.

The solution…

Worry less, have what you feel like when you feel like it, pace yourself and avoid any food or drink that you know will guarantee you a miserable Christmas. If you cannot tolerate alcohol treat yourself to some ‘posh’ soft drinks and drink them in a wine glass.

Not-so-spring cleaning

The problem…

Christmas is coming. Relatives, friends, friends’ of friends and their boyfriends’ friends will be visiting. You launch yourself into an unrelenting cleaning spree as if the Queen will be making her speech from your sofa.

The solution...

Don’t clean what doesn’t need cleaning! Visitors come to see you, not your sparkling floors and if you catch anyone dipping their finger in the layer of dust on top of your television, wrap up a duster as an extra present and let them make themselves useful!

Visiting the family

The problem…

Why is it that come Christmas your usually placid friends and family all seem to demand a time slot? It’s virtually impossible to squeeze in all the relatives, in what to some is only a two-day holiday, so you have to let somebody down – that’s natural and we all do it because none of us are superman/woman.

The solution…

Say no! Don’t feel bad about breaking dates or not turning up to the party. Put yourself top of your list. Try getting people to come to you instead and get them to bring a bottle and a plate of food each. Hold small gatherings during daylight hours and make sure you insist that people only stay for a couple of hours. Have help at hand to tidy up.

Clearing Christmas away

The problem…

Uneaten food, empty bottles, enough scrunched up wrapping paper to restore at least one forest, car boot loads of flashy new toys that will be discarded with the old ones by mid-January, unpulled crackers, more empty bottles, cardboard boxes big enough to set sail in, little-tinselly-bitty-things of unknown origin, even more empty bottles…

The solution…

Get somebody else to do it! Make a game out of tidying up for children and keep back some of those Christmas chocolates as prizes for the fastest clearaway! Don’t forget to recycle all those empties 

Most of all remember to enjoy yourself. You will not be struck down by a thunderbolt from above if you don’t get chance to vacuum on Christmas Eve or forget to buy a carrot for Rudolph. Christmas is a time of togetherness, so spend it well.

HAPPY CHRISTMAS and BEST WISHES for 2008 :p ;) :wave:


 
 

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deleted user [Visitor]

17/12/07 @ 19:38

You shouldn't even think about drinking, it's a BIG NO, NO. With all the pills, that the medical staff keep changing, and there's the feeling sick at the smell of booze. Well maybe it's just me, or is it ME? I like to think it's CFS, or PVFS, or something the Dr's haven't a clue about, so like to lump it under one condition ME. 1998 it started with me, and I can now control things, but I'm still not even close to living a normal life, even for a man. Life sometimes sucks, you've got to have proper rest periods, and if you can't do something don't do it.
I hope that blogging helps, at least you don't have to go out to do it.

franpalfranpal [Member]
17/12/07 @ 21:27

Well, I'll let you into a secret.. I do drink but in moderation and I do lead a fairly normal life now - being a working Mum and enjoying getting out and making the most out of life. I know my limits and yes, I often overstretch them but M.E. has confined me for too long and I feel a positive attitude combined with meditation help me enormously. Hope you have a great Christmas and a healthy and happy New Year :)

tel1342tel1342 pro
17/12/07 @ 19:38

This was once dismissed as “yuppie flu”, chronic fatigue syndrome (CFS) or ME (myalgic encephalopathy) is now recognised by the World Health Organisation as a neurological illness. Sufferers complain that doctors fail to diagnose it properly and the government recently issued guidelines to GPs about proper treatment of the condition, whose symptoms include debilitating fatigue, pain and problems with sleep, memory and concentration.

An estimated 250,000 people in Britain suffer from ME, which can affect anyone but most commonly strikes people aged 20-40. The typical trigger is a combination of a viral infection and stress, but bacterial infections can also be the cause. It can develop slowly, over months or years, and people with asthma, eczema and hayfever, or sufferers of migraines, anxiety and depression seem also to be vulnerable.

Early diagnosis is crucial. As there is no simple blood test, diagnosis is based on the exclusion of other illnesses and an assessment of a patient’s clinical history. “It’s not an easy diagnosis, and some GPs are better at it than others” .

Sufferers often find that routine mental and physical activities can leave them exhausted, but the condition can be helped. “Simple lifestyle adjustments can have profound effects, like avoiding stress and looking at the work-life balance.”

“Pacing” - balancing activity and rest - is said to be particularly beneficial, while osteopathy or physiotherapy can ease the musculoskeletal pain. A diet rich in complex carbohydrates (root vegetables, wholemeal bread) is recommended, and hot baths, massage and stretching may all help.

The newest approach is the Lightning Process. Developed by Phil Parker, an osteopath and personal development expert, it is expensive (about £500-£600) and clinically unproven. Some sufferers claim it has worked wonders, others think it a waste of time. The therapy involves a three-day training programme that combines osteopathy with stress management and relaxation techniques.

TAKING IT FURTHER:

www.lightningprocess.com Find details here about the Phil Parker Lightning Process
www.meassociation.org.uk The ME Association website, like that of Action for ME (www.afme.org.uk), is an excellent resource for comparative treatment and news

www.supportme.co.uk Set up by an ME sufferer, this has deals on supplements and other products.

1 Irritable bowel syndrome
The symptoms ME/CFS is an umbrella term for a wide variety of related conditions, including anxiety and abdominal pain.

2 Need to rest.

Pacing When you’re feeling better, the temptation is to overdo it, causing exhaustion. Find a comfortable level of activity by keeping a daily diary of how you feel after activities.

http://www.backtrouble.co.uk

deleted user [Visitor]

17/12/07 @ 19:54

After 9 long years ( although it feels like 90) of CFS/PVFS, and all the other stuff that goes along with it. I just want to struggle through, and maybe smile once in a while. I've been to pain management, it helped, done all the exercise stuff, been from one place to the other, here, there'n'everywhere, but still not much better, so I'll just carry on, without straining my eyes on things I already know.
I kept a daily diary, but couldn't remember to fill it in, then couldn't remember what I did, and on what day. So I stopped. I live for today, because tomorrow may be Crap ( I really wanted to use something stronger there, but it's your blog, and you may not like swearing, so I resisted) I hope you can manage to carry on with your life. I wish you well, because I know what you may be going through. Cheers...

franpalfranpal [Member]
17/12/07 @ 21:28

Thanks and hope you feel much better soon. Stay positive and enjoy what you can :)

Hope you have a good festive season this year, Franpal...hubby and I are both in the process of recovering from a really nasty virus so sympathise over lack of energy...today I haven't even had the energy to get dressed...:) Take care and take it gently...big hugs...

franpalfranpal [Member]
17/12/07 @ 21:30

Hi Jenray, yes I have dropped into your blog a few times recently and noticed you'd been under the weather. Hope you and hubby will be back on top form by Christmas. You take care too and I'm sending big hugs back :)

joebanglesjoebangles [Member]
17/12/07 @ 21:16

Nice to see you posting again Frances, I only know about ME from what you have posted in the past, I know that it's no fun and a lot more folk have it than you think, you seem to have it sorted out so do what you are telling others to do, take it very easy and don't bother with the un-necessary things, what sort of friends would look around to see if you had dusted that day, be good to your self.

All my best wishes for Christmas to you and yours.

franpalfranpal [Member]
17/12/07 @ 21:31

Thanks Trevor :) I am certainly not worried about what doesn't get done. I pace myself well in advance of Christmas and try not to 'book' myself on consecutive days!

Hope you have a wonderful Christmas too and a very healthy, happy and prosperous New Year.

deleted user [Visitor]

18/12/07 @ 06:28

How long have you had ME? The effect it has on your everyday life is tremendous, I can never fully explain what it's like to people who ask, and have now given up. I've got a GP appointment today, and the physio. tomorrow. Sometimes just going out can be a huge ordeal. Have you ever got ready to go out, then for no apparent reason, you just couldn't go? I've stopped reading books about ME/CFS/PVFS, because it just didn't help. I am on a drug called Modafinil, which has helped to keep me going ( I'm also on quite a few other drugs, mostly for pain relief and to help me sleep, my back and legs get so sore that I can't sleep, and if I sleep too much I get the headaches)I also have an exercise bike, which I go on as often as I can, some days I have to really force myself to do it, but at least it's better than staying in bed wanting to just go to sleep and not wake up. I also do the aromatherapy essential oils thing, I don't think that it helps much, but it keeps the room smelling nice.
Sorry for this long comment, but we all need to get things off our chest at sometime, and somewhere, so it's your turn today, but if you feel things getting too much for you, just pop on over to my blog, and let it all out, I'll put the kettle on, and get the HobNobs out if you like. I better go now, my left leg is going all funny on me again, one day it'll go away, I hope. Well if I don't bump into you again, try to have a nice Christmas, get others around you to help, or DO, because it's your Christmas too. Good Luck, and keep on going, because if you stop, you might never get started again. Cheers.....

franpalfranpal [Member]
18/12/07 @ 09:36

Yes life is never the same again once you get M.E. and the sooner you accept that the better things will be all round. I've had the condition for 11 years now - I was at university at the time and had to give up and come home for 3 years when I literally was unable to do anything and spent most of my time at the doctors or various alternative therapists!

It has been tough over the years but I feel as though everything I do is so much more of an achievement because I am battling M.E. at the same time and so I am extremely proud of myself everyday (simply for making it out of bed some days!). I have the love and support of a wonderful fiance and family and have found that the loving, caring and tremendously amusing nature of my 3 and a half year old is what gets me through the day.

It's not easy, I break down in tears some days because I am so tired and every limb and joint in my body hurts and I am constantly suffering from a cold or some sort of virus but I pick myself up and get on with it because, lets face it, we only get one chance at life and if it must be with M.E. then so be it but I'm not wasting it!

Sorry for the rant! I'm off to take a look at your blog now and wish you a very healthy and happy Christmas break and no doubt we will rant at each other again soon! Take care :)

tylluanpenrytylluanpenry pro
22/12/07 @ 19:28

A lovely post, Fran, and very helpful not only for those with ME but for anyone who finds they get overworked at Christmastime. I love Christmas/Yule - I just don't like all the hype that goes with it.

I have two close family members with ME - it's a devastating illness at the best of times.

I hope you have a truly wonderful Festive season - and that you come out the other side of it none the worse for the experience! :)

I'm with TylluanPenry. The older I get the less I want to do at Christmas time. So I have moved to a simpler way to celebrate. You have some excellent ideas.

Hope you survived and are getting ready for New Year's Celebrations!

franpalfranpal [Member]
06/01/08 @ 18:00

Hi Moonwoman, many thanks for your comments and apologies for not getting back sooner, it seems the hectic festive season and the return to work have kept me busy for the past couple of weeks! I had a great Christmas thanks and took some of my own advice (for once!) and rested when I could. It seems to have paid off as I am none the worse for enjoying the festivities and am looking forward to an even better 2008.

Hope you had a great Christmas and New Year and best wishes for 2008 :)

franpalfranpal [Member]
06/01/08 @ 17:58

Many thanks for your comments. Sorry it took so long to reply! Hope you had a great Christmas and New Year and best wishes to those family members who have M.E. :)

Andie Pring [Visitor]
http://dancingwiththesandman.blogspot.com
30/01/08 @ 14:29

Hope you had a lovely Christmas and New Year and that it wasn't too hectic. I think your ideas are great and I particularly like the one about asking people to bring a drink and a plate of food.

I too suffer with M.E. and know exactly how you feel. I am particularly bad at the moment as I am on a new course of drugs. I have recently been prescribed the anti-epileptic drug Pregabalin and although I feel worse at the moment I am very optimistic that there will be an improvement. The key is to titrate the drug slowly from a low dose of 150 mg a day up to 600 mg a day.

I have been on the drug at the low level for a month now. During the first week I was amazed at the improvement but. sadly, I returned to the same level of health that I had before I commenced the drug. Yesterday I was given the go ahead to increase it to 300 mg a day and feel absolutely dreadful today. I can hardly move with weakness and I am extremely hazy and dopy.

If you are interested in following my journey on this new drug then check out my blog
www.dancingwiththesandman.blogspot.com.

Take care
Andie xx

おネエMANSマニア [Visitor]
http://iishima.com/oneemans/
08/04/08 @ 05:07

Hi!!!
Nice to meet you.
Just stopping by...

Have a nice day!!

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