Thursday, 3 January 2013

So this is Christmas....

I forgot one teensy weensy factor in my last post. I was so full of the joys of Christmas and how, through pacing, I was going to have such a wonderful, magical time that I forgot all about my body. The one thing that could truly throw a spanner in the works and what a huge, heavy spanner it was.

You see, throughout my illness I have been trying to make friends with my body and work out exactly what it is that is making it so unhappy so that I can do my best to make it better. I thought we had managed to come to some sort of understanding, a truce perhaps where if I treated it well, it would be kind to me. It seems I was wrong as just before Christmas my body and I had an almighty falling out. Aches, pains, fatigue through the roof. With only days to go until the big event, I was reduced to a tired heap under a duvet.

Of course, the signs that the positivity of my last blog might be a bit OTT were there before. The cards I had made and sent in plenty of time became a sore point as in return I seemed to have much fewer cards than usual. In fact, from my entire side of the family I received just one paltry Christmas card. ONE! Nothing else from parents, brother, uncles, aunts or cousins. So thank you, Aunt Joyce for being the only member of my family to bother sending me a card. I also make allowances for my 97-year-old Nanna as it's hard for her to hold a pen these days. To the rest of my family, it's detention all round!

Now, normally I wouldn't be so bothered about who sent me a card as that's not the reason I send them. But this year, not only had I gone to the effort of making them, it also seemed to me that after a year of feeling invisible due to my illness, each card I received was some validation that I actually still exist. Silly I know, but each piece of glittery folded cardboard was a small token of proof I was there and that someone else cared. Still, I reminded myself that Christmas is about giving, not receiving and did my best to move on. After all, there was still the matter of presents and I was pretty pleased with what I'd made on my sewing machine. Plus I'd had time to make a list full of things I really wanted so what could go wrong there?

Stylish dressing gown/shades combo
What a shame that on writing that list, I failed to notice my body smirking nastily to itself in the corner. As an early present to myself, my body had developed a sensitivity to light and sound making things like reading, watching TV or listening to music difficult and uncomfortable. I attempted to combat this by wearing sunglasses so I could at least watch some Christmas telly but even then could only manage short stints. So it was with gritted teeth and a huge sense of irony that I opened my presents consisting of books, CDs, a computer game - all things I really wanted but thanks to my body had no idea when I'd be able to enjoy. Bugger. Still, I reminded myself yet again that Christmas is about giving, not receiving and prepared myself for a lovely Christmas day with relatives.

It seems that yet again my body had other ideas. The exact details of my day in retrospect resemble some sort of 1970's farce yet at the time the experience was more like a mental and physical ordeal akin to the assault course on the Krypton Factor or a trip to the Crystal Maze. It had escaped me to realise that a day spent with an excited four-year-old and all his bleepy, flashy toys was not the best thing for a person with light and sound sensitivity. Even worse was that the apparent gift of choice for both children and adults this year seemed to be harmonicas (cue much blowing and shrieking in the guise of music). Never mind, I was already prepared for too much bustle making me feeling rubbish and had asked my hosts for somewhere comfy I could go and have a lie down when things got too much. I would just go and have a rest and all would be better.

This year's fashionable festive gift
Being lovely and thoughtful, they had assigned me a bed as far away from the action as possible for maximum peace and quiet. Unfortunately it was up several flights of stairs and in the freezing attic so getting my feeble frame there was equivalent to climbing Everest but without a Sherpa. Added to this, their lovely house had high ceilings and echoing rooms which served to magnify all the noise and funnel it straight up the stairwell and seemingly into my ears. Arse. Somehow I managed to scrape through the day. The worst was knowing that had I been well, I would have had a fantastic time and would have stayed revelling and playing bleepy, flashy games long into the night. As it was, I was home by 6.30 and in bed not long after. The effect of the day on my already low energy reserves was to ensure I stayed in bed for pretty much the rest of Christmas and cancel all further plans with family and friends.

Thankfully now I am starting to feel almost back to where I was before all the festive fandango. I have learned my lesson well and shall refrain from smugness and over-positivity just in case my body decides to play another nasty trick on me. And as far as Christmas goes, if I'm still ill come December, it'll just be me and my husband at home. Although, if I'm well then who knows where I might be. I hear Barbados is quite nice...........


  1. Have you ever been prescribed Fluoxetine (Prozac)? I know a lot of people don't like to take it because they think it's only an anti-depressant, but I find it helps a lot with the sound- and light-sensitivity, really makes a difference. I hope you've recovered a bit now :)

  2. Thanks for the advice Helen. My doctor offered me anti-depressants when I first got ill as my mood was quite low but I turned her down. I know some sufferers take them and find it helps with symptoms other than depression but I'm trying to avoid putting pills and chemicals into my body unless I absolutely have to. I'll be seeing my doctor soon so will speak to her and see if I get more than the usual shrug in response!