I have to take a blogging break for a week – internet provider beginning with S and ending in Y is seriously annoying me now, must sort out.
I can still respond to comments from my phone, so keep writing. Back soon……..
p.s. for non-British readers, the picture is of a test card they had when I was a kid and telly was off-air. That clown gave me nightmares.
I am one present away from completing my Christmas shopping.
Before you start pelting me with mince pies (or Terry’s Chocolate Oranges – yes please), I can explain, honestly.
Organising Christmas for the last couple of years has been a bit of a nightmare, so this year I was determined to be calm, cool and collected.
I drew up lists, scoured the internet then decided it’d be far easier just to give everyone a onesie. Present list – big tick. The Teenager could have a Superman one, The Boss could have a Homer Simpson one and I’m guessing they make them for cats now too.
After running the idea past The Teenager (who looked at me in horror, told me he wouldn’t be seen dead in an oversized babygro and turned his music up even louder) it was back to the drawing board.
So now I have a whole stack of carefully-chosen presents, reams of wrapping paper, ribbon and gift tags. All waiting for that advert-inspired magical evening where I will settle myself down with a glass of mulled wine, Christmas carols playing in the soft-focus background and fight with the sticky tape and try to catch the cat when she runs off with the ribbon.
The internet has been a blessing, although I’m not sure my postman sees it that way, as he struggles up the path day after day. I’ve ordered everything from it – right down to a reel of invisible thread to hang my home-made stars with. Yup, getting the shopping out the way has given me time to pick up my glue gun. I’m going to get crafty this year. My Christmas wreath was a bit of a disaster (Pinterest made it look so easy, bah), but you can’t go wrong with stars. Can you?
So this year I won’t be barging my way through crowds. I couldn’t even if I wanted to. I’d slip unnoticed to the ground, trampled by hordes of eager shoppers poking each other in the eye with jumbo rolls of wrapping paper.
For people with MS, Christmas is a society-endorsed period of doing what I am an expert at – dozing off on the sofa in front of rubbish telly – and I intend to make the most of it.
I’m chuffed to share with you that something most of us with MS have been doing, like forever, has now been designated a zetigeisty trend – socialising lite.
Driven by impossibly busy New Yorkers/Londoners, this involves combining two or three activities to fit more into your life.
Or in our case, to ensure that we can still keep up with our friends/hobbies/interests despite fatigue and other pesky physical symptoms getting in our way.
The secret of socialising lite is to make your free time work for you. For people with MS, this translates as making those rare pockets of energy work harder for us. Even before I knew this was an actual trend (ooh, get me, chuck me a copy of Elle), I’d already started to do this – like combining catching up with a good friend and a shopping trip to town or asking my mum to help me in the garden, having a natter and putting the world to rights over a glass of wine afterwards. Killing two birds with one stone, but in a good way.
I miss doing what I used to do spontaneously, so this is a great compromise. Plus there’s an added bonus of still feeling that I’m part of life, of society. Spending so much time at home has made me more aware that I need to get out, even just for a short while.
A more extreme form of socialising-lite is time-capping friends, which at first glance might seem rude, but with all of us juggling busier lives it’s much more acceptable. Long gone are the days I’d go out for whole evenings, so rather than become a hermit (tempting), I say to my friends that I’d really love to see them, so how about we try that new wine bar/cafe/restaurant/exhibition and catch up for an hour? I get to see a good friend and try a new experience.
Time-capping doesn’t mean I don’t enjoy spending time with my friends, it just means that I don’t want to wait for both of us to be free for a couple of hours/when I’ve got energy/when I’m not pinned to the sofa with fatigue.
My next plan is to combine exercise and friends. So if anyone would like to pop over and join me in staring at my kettlebell (aka the doorstop), willing it to move by telekinesis, you’re more than welcome. You bring the biscuits, I’ll put the kettle on…
If jealousy has green eyes, guilt most definitely has red, judging by the amount of tears I cried on Tuesday night.
The day started innocuously enough. I schlepped to work, planned dinner for later, joked around with the boss. Then blam, thwack. Whole-body weakness, a brain stuffed with cotton wool and a need to get home pronto.
The boss let me go early and back home blind panic set in. I couldn’t cook dinner. I could barely stand and when I did, I was pin-balling off the walls, so I called my mum for help. She rushed down, but The Teenager was adamant that he didn’t want to sleep overnight at her house (no Sky Sports News).
She stayed for a while instead, giving the cat some chewy treats, cheering us up, admiring The Teenager’s new Nirvana poster and giving me a bit of space to panic some more.
All I wanted to do was go to bed, and not just for a nap. During the day, I sleep when I have to and The Teenager is either out or at school, but the evenings are different. And therein lies the problem and source of my overwhelming guilt. I’m a single parent (violins at the ready) and The Teenager is an only child. It just wouldn’t be fair to abandon him at 6 or 7pm. I know he’s 14, but I grew up with ill parents (my dad and my stepfather) and am keenly aware of the fears this gave me as a child.
So what did I do? MS left me no choice. I crawled into bed at 7pm, crying my eyes out, leaving The Teenager downstairs with his homework and remote control.
Ten hours later I woke up, guilt flooding back. Until I looked at all the tweets I’d been sent while I’d been sleeping. Lovely, supportive tweets from all around the world. I wasn’t going through this alone. So, I stumbled out of bed, woke The Teenager for his paper round and we had a little chat as he struggled to get his waterproof trousers on.
After patting me on the head and telling me he was fine, he launched into a goal-by-goal account of a football match he’d watched with the cat. Then he bashfully admitted he’d read my Twitter feed last night and felt comforted by all the messages of support, and he too felt less alone.
Just before he left for school, he said I was more than welcome to go to sleep early again, he’d just chat to my Twitter friends. Um….
I think I’ve finally come to terms with having MS in my life.
It’s been a long grieving process, a period of mourning what I have lost and what will never be.
But through this grief, I’m now more aware of what is good in my life, and I’ve discovered previously-untapped inner strength. So how well did I manage the classic five stages of grief?
Denial – This. Cannot. Be. Happening. I spent a long time with this thought, lying awake night after night, gripped by an unfathomable darkness, terrified of stepping into the unknown. It was an unreal situation and I blundered through it, denial far easier than facing up to very real fears.
Anger – I had this in bucketloads, plus an unhealthy dollop of self-pity. I was angry beyond belief. Just when my life was opening up again and long-awaited opportunities were within my reach, they were going to be snatched away? Seriously?
Bargaining – I didn’t really spend any time at this stage. I knew deep down that there would be no bargaining. Rather than try to exercise more or incorporate a healthier diet in an attempt to avoid the inevitable, I veered off in the opposite direction, thinking, ‘what does it matter, the damage is already done’. I self-medicated with chocolate, wine and comfort food.
Depression – This was the longest, most soul-destroying stage. I withdrew from the world, helped along by my symptoms speeding up the process. Home became my sanctuary and my prison in equal measure. Life was interminably bleak, the days long and dark, the nights longer. And darker.
Acceptance – After the awful depression, I had a choice. Either to go under or create a new way of living. I was fed up waking up every day under a cloud of misery. Rather than focus on what was lost, I looked at what I could do. What had this whole process taught me? After facing a vortex of fear and terror, the only way to look was up. The alternative was unthinkable.
Grieving allowed me to survive this change in my life and come out more positive and stronger within myself. Change comes in many guises, mine just happened to be MS. It shook my life to its foundations, but the resulting re-building is more secure and solid than before.
And the best thing? I had overwhelming support support from you, through this blog. Thank you.