Archive for October 2013
I read a blog from a total stranger yesterday and it got me thinking.
Go off and read it yourself if you fancy. In fact please read it because you’ll understand about what I have to say better.
This woman…this stranger writes and explains it so beautifully…better than I can. And because everything and I mean everything she says, I feel too if I were as good at words as she is.
It feels like I could have written it.
So go and read it and then come back here and read this please.x
Welcome back…did you enjoy it?
Did you understand?
I hope so.
For those who didn’t…the general gist was that it’s coming to that difficult time of year again…Christmas. And for people like her and I it means making choices that are hard for us and leave us feeling disappointed.
Now there’ll be several attitudes to this festive season but I have to warn you I now belong fast and firm to the “I hate the fuck out of the whole affair’ crowd.
I have to point out here that I used to be one of those people who always said yes. I wanted to please my loved ones and I also wanted to fill my life with new and happy experiences and I always wanted to help and be helpful.
That changed somewhere down the years.
So here’s why Christmas isn’t such a fun time for me anymore.
It actually started for me well before I fell ill…in fact it might have a teensy bit to do with my husband having had his road traffic accident on the 21st of December 2004 which resulted in him becoming a T12 paraplegic..changing both our lives and altering our future hopes and dreams forever.
I’m not going to hark on about it all because in some ways I think that critical moment in our lives changed us both for the better too…we certainly wouldn’t have been able to spend so much time together every day if he’d remained in the Royal Navy and carried on with life as we thought it was going to be.
But I have to mention it because I do think that’s where my hatred of enforced celebrations like Christmas began…I actually prefer to be jolly and downright silly all year round to be honest…who needs mulled wine, empty bank accounts and overpriced perfumes to enjoy life? Not me!
So there the seed of dislike began…I found it hard that year to be cheerful around my family and friends when the love of my life was fighting for his life in Newcastle General ICU.
But we made a life for ourselves…astoundingly happy at times and downright miserable at others.
Just like everyone, life has it’s ups and downs and we lived as normally as we could. We often made presents for family and enjoyed making them and giving them…but always the little niggle of what’s this all about really, burrowed into my brain.
We live a little distance from family but back then it wasn’t too much trouble to nip down to try to join in with them all and be joyous. This applies to birthdays and all the year long celebrations that all families enjoy.
My husband and I never managed to have children either…it’s a very long and boring story but it’s pertinent because I think these days Christmas and children are entwined as being essential and it does feel even more magical when there are little ones there to celebrate with.
But then came along ME (incidentally directly after IVF) and here’s where Christmastime really becomes a nightmare for me.
All the stress and planning and expenditure becomes magnified a hundred fold. Imagine trying to organise presents when you really don’t have the energy to make it to the bathroom some days, When the money that’s coming in is just enough to make life bearable anyway, nevermind having to cut out food and heat to pay for crap that your friends and family don’t really want, need or appreciate anyway and then think of all that planning and the big day comes and wham…it’s a bad day and there’s no travelling anywhere…so the phone calls full of disappointment begin and the tears of missing out on a family gathering…again and the guilt at always (well nearly) having to let your loved ones down..AGAIN!
So after all these years the invites stop, the visitors stop and the excitement and the planning stop because why bother when this illness really does halt everything in it’s tracks… even the most special days that we are all meant to be able to enjoy.
It’s very hurtful when friends and family move on with their lives and leave me behind…like a once loved and treasured teddy bear who is now stored away in an affectionate cupboard of their lives but no longer cared enough about to want to come and see, for short periods that my illness will allow or send invites with a get out clause and some understanding that I probably won’t be able to make it.
It’s always lovely to be asked anyway isn’t it.
It’s always lovely to know you are loved and that people care.
After fifteen years of this I think I have the right to feel a bit shit about Christmas.
A couple of weeks ago I went with my husband to Edinburgh and with the help of my trusty mobility scooter we had a lovely afternoon going around the Botanical Gardens. It was so wonderful to be somewhere we hadn’t been to in such a long time. It was once a favoured place for us to wander round on our Wedding Anniversary…we’re wild and crazy like that.
You see feeding squirrels, having a little picnic and enjoying nature around us is something we both adore so it’s perfect for us really.
We then popped by Arthur’s Seat…a majestic mountain right in the heart of the city…somewhere very special to us. As we sat in the van I gazed longingly at the multitude of people walking and jogging along the pavement that encircles the Seat and many even climbing to the crags and hillside. How wonderful to be so healthy and full of energy.
At the bottom there’s a little craggy outcrop and in a spur of wild abandon I decided to walk the 50 yards or so along a little dirt path and climb the little piece of rock, It was my mountain that day…I felt wonderful that I was well enough right then to achieve such a thing and even though the past two weeks I have been in such terrible pain and feeling so exhausted at times it’s hard to even make it to the bathroom nevermind consider walking those few yards again…I’d do it again in a heartbeat.
I was alive that day instead of the half existence that my illness…ME…subjects me to.
So many ups and downs to deal with in this roller-coaster life. But sometimes it’s worth the risk and the payback to just heal the soul using energy I have so little to spare. So many have none and I honestly do think of all my beautiful friends at times like those and wish they could be right there by my side.
Those of us with ME are living a half existence really until a cause and a cure is found for us. There’s nothing really offered in the way of treatment and we’re all in our varying degrees of severity just hanging on and longing for someone to find that way back to health for us.
So while we wait…some of us campaign and promote awareness. My whole reason for this blog really. Most of the time i don’t have the energy to write anything…I just share stuff I read elsewhere and then other times I can’t even do that…BUT…yesterday something happened that I’m not seeing being reported anywhere with any degree of passion in the M.E. World…especially Facebook.
It involves the husband (Harvey) of Annette Whittemore, founder of the Whittemore Peterson institute in the USA. The WPI was at the centre of ME research several years ago mainly because of the work of Dr Judy Mikovits and her work on retroviral links to ME.
Sadly it all went wrong and it’s too complicated to explain here but it involved arrests, court cases, bankruptcy and a lot of bad feeling in the M.E. Community. Do a Google search and you’ll have your eyes opened to how it all panned out.
But as I said Harvey Whittemore was sentenced to 24 months in Jail, which you can read why here in the Reno Gazette Journal. A faraway crime in a distant land by a very powerful and highly influential lobbyist. But it does, in my eyes have implications upon the world of M.E. and who is involved in research these days. Something I believe everyone who has an interest in M.E. research should know about.
So…I climbed my mountain this month and Harvey Whittemore fell from his.