May is ME Awareness Month and once again I am participating in the virtual campaigns online to help raise awareness of this life-destroying illness called Myalgic Encephalomyelitis. Today I'm sharing my story. How did I become so terribly ill and housebound? When did it happen? And how long did I have to wait for a diagnosis? Here's my ME story:
Last year was a tough one for many of us, but looking back I realised that I have learned many important lessons which make me stronger and better equipped for the year ahead.
So although 2018 was a year of very high highs and very low lows, there were many lessons scattered among both the trials and the triumphs. This is the way life goes - it is never linear and it's always changing - but we can always look back and learn something from what we have been through.
Through the course of each year we will grow wiser, we will heal old wounds, we will get up and try again, but each time we will also be a little stronger.
This summer was a season of great change for our family. After little more than a year in our flat, my dad had found us a lovely big house with a garden and we were packing again. Moving house can be quite stressful for the healthiest of people, so it can really be a nightmare for somebody with a severe chronic illness like ME.
We actually loved our flat, it was enough for my sister and I, it ticked most of the boxes when we were house hunting a year ago, but there wasn't room for the parents when they came over, and it was starting to get crowded.
After moving to our new house last week, we hung our first bird feeder out on Monday and waited (im)patiently for the birds to come eat, but they didn't. No birds to be seen at all. We were disappointed, but I knew that they would come - they just had to discover the spread first.
After days of silence and stillness in the garden, on Wednesday morning a brave little birdie came hopping along the fence to inspect the spread. He was very nervous and dashed away at the slightest noise or movement.
He came back though. A few times throughout the day. And then he brought a friend.
Although May 12 is ME Awareness Day, a global day of "Millions Missing" protests and demonstrations by people with ME, their carers, family and friends, many patients are too ill to leave their beds and would be lost and hopeless if not for the able bodied supporters who take their places at these rallies and make some noise for those of us too ill to do it ourselves.
I have recently been asked by a few healthy friends how they could practically help our cause. So in this post I will list some ideas and links to other initiatives that would greatly benefit from any support you can give.