We launched a new ME site in September at www.York-ME-Community.org. We have linked to Invest in ME through our site as we can see the great work they are doing for us and want to spread the word! They support the areas of research that I can see being useful to us, now and in the future. We also have members of our group who do their bit in raising funds through selling crafts for IIME and we tend to point new members to your site as where to go for good advice. I think Mike Harley is doing a magnificent job in running these marathons and as I used to do a few myself, I’m also a little jealous of him!
I was first hit with ME over 9 years ago. We were on a family trip to the Lake District on a reasonably warm day, when I started to feel cold and shaky. I had to go inside and wrap everybody’s jackets around me to keep warm. Next day, I felt as if I’d been hit by a train, bruised and sore all over and could hardly move. I was pretty much like everyone else, working full time, stupid hours, with a busy social and sporting life. A week would include badminton, archery, training a girls football team on a Thursday, with a match on a Saturday. I also ran marathons for charity, now I can’t walk for toffee. I now have a Blue Badge and Bus Pass years before my time!
The social life has dropped away as I’m no longer able to cope with the background noise of a busy pub or restaurant without ear plugs and enduring massive payback later. I can no longer work as I had to give up in January 2015 as I could no longer function in an office environment. Just routine noises in the office would drain me and leave me unable to think straight, concentrate, or find the words to put a simple sentence together. Background conversations make my head explode as I can’t filter out one conversation from another with my brain trying to take on everything at the same time, and understanding nothing! I went to a large Supermarket a little while ago and was totally overcome by the background noise and lights to the extent that staff had to take me out of the shop in a wheelchair. My legs had just frozen and stopped working, and my brain had locked up in such a way that I couldn’t find the words and was able to speak anyway, to tell them what was wrong!
When other things are going on around me, someone talking to me is like them throwing a bucket of words at me and them just bouncing off, my brain not knowing what to do with them. So generally, like most with ME, my world has shrunk dramatically, with little chance of being able to work again, and most activity brought to a halt.
It obviously affects my immediate family at home, my wife and daughter. Small unexpected noises around the house can affect me; my daughter just tapping keys on her laptop, or my wife turning a page in a magazine. It’s as is my ‘Fight or Flight’ mechanism is running at 95% all the time. When I’m drained, these sounds actually hurt, but they can’t do any more than they do to help me. Trips to the shops are rare, and although I’m not a keen shopper, it would be nice to have these trips out with family now and again.
It follows through to other family members as I can’t go to visit my son, daughter-in-law and granddaughter as often as I’d like as the travelling can mean I’m worn out by the time I get there, even though I no longer drive other than short distances. Friends no longer call to see if I’m up for a night out, as they’re pretty sure I won’t be. It would still be nice to be asked though……
I like to get involved in the conversations and posts on the Invest in ME Facebook site and like to chip in with my thoughts, views and support where I can. I also ensure that I share any items that I feel would be useful to others. It is also the site I recommend others to look at for good advice and as the ME Charity to support. We also have members of our York ME Community who sell crafts with all proceeds going to Invest in ME charity.
I’m a huge supporter of the work Invest In ME is doing towards the Rituximab Trials. It seems to me to be the one positive going on out there for us. However I strongly believe that to get these funds we must first work on raising awareness in ME. I think that at the moment people are a bit charity weary as there are so many worthy causes to give to and so I don’t want to be seen as just someone else holding out the begging bowl.
As someone who used to run marathons for charity, I used to find the hardest part was asking people for money, not the running! I also think it’s so difficult to get folk to give towards an illness they know nothing about. I’d rather leave that to the big boys rather than my ‘one man band’ website and concentrate on raising awareness. If we can do more of that, belief will follow, then the funds to find a cure for this beast, and hopefully that will come from the Rituximab Trials being so well supported by Invest In ME.
I spend what energies I have now in running an ME website at www.York-ME-Community.org. Although based in York with a local flavour, everyone’s welcome. Although it’s for those interested in ME, we spend a lot of time discussing other things. We aren’t defined by an illness and we see our site as a bit of a Corner Shop where we might bump into an old friend, where we might talk to about last night’s TV, or about the football. We talk crafts, poetry, have a Jokes page as well as a link to a 24 hour on-line Military Veterans Radio Station that supports us. Although initially an on-line group so as to be accessible to our housebound friends, the ladies of our Community have recently held their first coffee morning. Although all expected ‘payback’, they had a great time!
We have lot of exciting ideas lined up, so please come and register on our site and join in the Community! I can also be contacted via bill@York-ME-Community.org.
It’s so important that we don’t continually look inward, complaining about our lot. We have to look forward, and be heard. We need to raise awareness and belief to get the funds we need and so it’s pointless just talking about ME to others who already know. We need to be telling others, and so through Twitter I’m trying to get everybody, that’s sufferers, carers, family and friends to tell one new person a month about ME using the hashtag #onemoreforME.
We may have ME, but ME doesn’t have us!
(click here for our intro to Let’s Do It for ME take on Movember Awareness of men’s health issues and please share – thanks for your support!)