Tuesday, 18 December 2012

We wish you a ME Christmas.........

A Tale of three Christmases

The Christmas before last seems like a lifetime ago now. It was my best Christmas ever. When I woke up on Christmas morning there was still several inches of snow on the ground. Everywhere was sparkly, shiny and looked like the picture on a Christmas card. Before we left to spend the day with my boyfriend's family, we opened our presents to each other. His final present to me turned out to be an engagement ring! Add to that my family coming to visit the day after Boxing Day and me cooking them a Christmas Dinner for the first time, all in all it was the perfect Christmas. I finally felt grown-up - here I was in my own home, engaged, cooking my parents a nice meal. Things couldn't get any better.

Load of Baubles
Fast forward a year to last Christmas and things were very different. I had been ill since getting back from Honeymoon in August. Only recently diagnosed with Post Viral Fatigue, everyone (including myself) was still expecting me to suddenly be well and back to work at any moment. Having had no advice from the medical profession other than to rest, I didn't really understand the nature of my illness. Even though I was too ill to work, I thought I'd be fine over Christmas. After all, spending time eating, drinking, watching TV and being with family isn't tiring is it?

Wrong, wrong and even more wrong.

Whatever possessed me to think I could go out with friends on Christmas Eve, travel to my parents Christmas Morning then travel back to my husband's parents on Boxing Day I still can't fathom. Even in full health that would be a push. In hindsight I guess I just didn't want to let anyone down. Plus after 4 months or so of being virtually housebound, I was so eager for a bit of excitement I think I got a tad carried away.

So on to this year. I have learnt my lesson well and have come to understand my illness and its limitations. I now know from my own experiences and research into ME that spending time with other people is mentally draining and just as tiring as physical exercise. I know I need to pace myself and so have allowed at least a day to recover in between functions. I am prepared to commandeer bedrooms and sofas in order to have some quiet time to rest away from the hubbub of family and friends. I have also realised that in many ways, this slower pace has actually paved the way for a better Christmas.

Ye Merry Christmas jumper
In the past, the run up to Christmas has been frantic. I worked in retail for several years then became a teacher so throughout my working life I had always seen all the preparations as super stressful and not enjoyable at all. This year, with no expectations of being well enough to work I have had plenty of time to relax and enjoy things. This year I have been getting rather excited by it all and even bought a Christmas jumper!

Shopping in town has been crossed off the list - large bustling environments and me do not mix well. Instead I have shopped online for some things, others I have made. Financial constraints due to no longer earning any money has made me get creative and having plenty of time alone at home means I have been able to spend the last few months making cards and sewing gifts for friends and family. These gifts may not have cost as much but they are made with love and care. I have had each person in mind as I have been making their gift, unlike previous years of panic buying the usual mass-produced twaddle that probably gets sent straight to the charity shop. And even though my new healthy diet and alcohol intolerance means an end to stuffing my face with all the food and drink within a 10 mile radius, the upside is I have lost the best part of a stone in a couple of months and can now actually fit back into clothes I haven't worn for ages.

Who knew potato printing was so theraputic?

All in all, ME may have forced me to change my Christmas habits, much as it has forced me to change my entire life, yet at the same time it has brought me many positives and one of those is to be excited about Christmas again. As long as I make sure I pace myself and listen to my body I know there's a good chance it will be a very merry ME Christmas indeed.

Now, if I could just win the lottery.............

Saturday, 1 December 2012

The recipe for ME

The more I read about ME, the more I realise what a complex and bewildering illness it is. The possible symptoms are many and varied, with each sufferer experiencing their own personal concoction in differing amounts and intensities. It's a bit like looking for a recipe online - each cookery website has their own version for the same dish, just with slightly differing ingredients and amounts they recommend you use.

This brings me to my own version of ME. I take comfort in the fact that the majority of my symptoms are shared by others which helps me to remember I am not going mad or about to die from some undiscovered tropical disease. However, there always seems to be something new and crazy happening to my body or my brain and I never cease to be surprised by the exciting new methods my immune system finds to torment me! With this in mind, I have been thinking of what my own particular recipe would consist of. I think it might go a little like this.......

How to make Post Viral Fatigue

Take one nasty chest infection and mix thoroughly with an equal amount of sinus infection.
Add a generous helping of muscle aches and arthritis.
Leave for 1 month whilst attempting to carry on with normal life.

Once mixture has culminated in total physical collapse, you are ready to add the next ingredients.

Add the following:
A dash of swelling,
Recurring cough and phlegm,
One pinch of hot flushes,
A soupcon of fever,
An inability to concentrate,
A scattering of blurred vision,
A large quantity of tension headaches,
Disturbed sleep patterns,
And the main ingredient - several bucket loads of fatigue.*

*Note - it is important not to use any normal tiredness or sleepiness. You must make sure you have the finest quality, Grade A fatigue that will render you unable to even hold a conversation properly, let alone leave the sofa or bed. 

Make sure the ingredients are combined well and let mixture simmer for the next year.  At random intervals just as things seem to be settling, stir all the ingredients up a bit to get them all bubbling up again.

Whilst this is cooking away nicely, you can use the time to prepare your side dish:
Take a large bunch of irritable bowels and several spoonfuls of Candida.
Add some anxiety, depression and weight gain to taste and toss together with several good glugs of cabin fever.

As September approaches and your dish looks like it's ready to serve, suddenly reduce the heat and add several gallons of rainwater. You will notice all the ingredients may attempt to rise to the surface again. If this happens you will have to keep on simmering and stirring until everything is completely done. This could take months, even years so prepare yourself for the long haul. In the mean time you can thankfully finish off your side dish, perhaps leaving the way clear for you to make another with some more exciting ingredients such as nausea and heartburn.

There are so many little aspects to my illness that I might have left a few 'ingredients' off but you get the general idea. I think it goes without saying that this recipe is definitely one I hope you don't try at home!