When I thought of the topic of this piece, I wrote the title above as a genuine question which I was hoping you could help me answer. Now, I’m thinking it’s the most rhetorical question ever posed. My head’s all messed up by fibro-fog at the minute and concentration is a real issue so I think I’ll have to wait until the end of the post to decide one way or the other. Here we go…….
Since I started working in a pub about 12 years ago my Christmases have fairly predictable. I work my ass off all through December culminating in my favourite work night of the year, Christmas Eve. Having worked and celebrated ‘til the wee hours of Christmas morning, I go home to get some sleep while Santa does his thing and then wake about 7.30. Stocking presents are opened, off to Mass in Irish, open lots of presents, give lots of presents, over eat, over drink through Christmas Day and St. Stephens Day (Boxing Day), return to work and then volunteer to work on New Year’s Eve because it is better than being off for it, then round off the celebrations with the staff Christmas party in early January.
That was then and this is now.
2011 wasn’t the worst year in the world but despite some bright spots along the way 2012 has been horrible. It was 11 months old before I got any good news from a doctor, which was merely to learn my CPAP machine is helping my sleep apnoea. Even that was tempered though by the fact my apnoea is caused mostly by Central Nervous System problems and I’ll probably be on the machine for a long time, if not forever.
So what’s my plan for this year’s festivities? I haven’t gotten there yet. Fibro-fog is such a curse that one task a day is about my limit and that could just be writing a to-do list never mind ticking anything off said list. As a result I haven’t even thought of next week yet. My family and friends are so understanding and have offered all sorts of different options for celebrating Christmas and they all finish by saying ‘make sure to do what you want and we’ll row in behind you.’ This makes me incredibly lucky to have such understanding people in my life but I’ve no idea what I want from minute to minute right now.
While I’m reducing the crying and despair that is caused by my fibro and symptoms, I have zero trust in myself. I’m paranoid, I’m my worst critic and my indecisiveness is ridiculous. Even narrowing down the list above took five drafts and I’m still not happy it covers the full range of my emotions. I’m sure 99% of fibro fighters would wish for such freedom and understanding to do only what they want to do. For many years the next two weeks have been utterly predictable for me, now it’s their utter unpredictability that scares me. This fecking fibromyalgia/depression mix I’ve got going at the moment makes my brain hurt. I just can’t get out of my head!
Basically I’ve gone from having no choices and enjoying every minute of work, rest and play to having all the choice in the world and feeling pissed off with the world that this is the case. The mind is a bloody complex animal and mine has me exhausted. Drive up to my folks or get a lift, travel up on Christmas Eve or Christmas morning, have carrots or peas with my dinner, buy this present or that present for my god-daughter, have cereal or Christmas cake for breakfast, what will I wear today? Each and every decision, big and minute, important or trivial feels like sitting my driving test again.
Can I not just go to sleep and see you all in January? I’m so tired. My head races from morning-to-night and has started waking me up during the night again to race some more.
To all my family and friends can I just say the following; I love each and every one of you and whether I manage to see you this festive period or not that will never change. At times it will seem selfish if I have to back out of something at the last-minute but after such a difficult year, I hope you’ll all understand if I engage in some self-preservation to get me to 2013 and hopefully a year of more good times than bad.
So let me just say, mind that person in your life who is struggling and I wish you a Happy Christmas and fantastic New Year!
P.S.: I don’t know if it’s correct to include the following paragraph but I want to do it anyway. Despite the fact I use this blog as a therapeutic tool for myself, there are many times when words are simply hollow and can never express how we are truly feeling. I have talked about depression in this blog but it is purely my personal experience and I know similar illnesses can affect people in vastly differing ways. So maybe this festive period, at some point, you might spare some time to think of the family and friends of Erin and Shannon Gallagher, I know I certainly will.