This was an adventure like no other. I have attended two weddings already this year. The first broke me in gently as it was an evening reception close to home. The second was a little further afield and I managed so well. Unfortunately I had to leave halfway through the wedding breakfast due to dramatic events not linked to my health (for once!)
On Saturday I had my third wedding of the year and this was a big one for me. It required two nights in a hotel a couple of hours from home for a start! I would then be ‘out of the house’ from 11:30am until late into the evening, if all went to plan. There were no rooms at the venue for me to sneak off and hide in if I started to crashing run out of energy.
For a body that doesn’t produce energy properly it did wonderfully well! I am so chuffed and proud of it for what it achieved and for how long and well it lasted.
The weather was glorious and I actually did okay in the heat. I usually struggle as it zaps my energy. I even managed to laugh and chat and play boules with my favourite friends. This is the stuff of dreams for an M.E. sufferer.
There were bits that required us to sit down and stand up quite frequently. Well frequently for me. I couldn’t manage more than a few minutes of standing still at a time and so had to sneak off to sit down in the quiet. I had lots of little rests and then one big one when it was clear from my slurred speech and fever-like symptoms that I needed some time out.
The original plan was to get a taxi to the venue, half an hour away from our hotel. In the end though, my boyfriend (aka Mr Tree Surgeon) drove us to and from the wedding so we never had to wait around for a lift if I needed to leave quickly. It also meant I had somewhere to hideaway for little breaks. He’s kind of awesome like that.
I do wish I had taken my walking stick in the end. I tend to use Mr Tree Surgeon as a replacement, but it might have helped other people realise that I wasn’t actually drunk in the early hours of the afternoon. Still, I should worry less about what other people think. And I seemed to be in better shape than some people!
I felt so very loved. Everyone of my friends is so wonderful with my regards to my ill health. They give up their chairs for me. Never let me go anywhere on my own “Just incase”, and one in particular seems to be so in-tune with my invisible illness that she knows exactly when to ask if I’m doing okay. In the past they’ve cut up my food for me. Put my shoes on for me. Done the things that a mother first her toddler. They are gold.
After a good quality rest (with no music or stimulation of any kind) in my tiny car Pascal, I managed to stay for most of the evening reception. It was obviously loud and the flashing disco lights were a new challenge but I did better than I’d have done 12 months ago, when I ended up sleeping in the dining room again. It was hard to sit and watch my friends on the dance floor. When I was well I was always the first up on the dance floor and didn’t care if no-one joined me. But I’m still not well enough, energetic enough or fast enough to move in time with the music. So my lovely pals came and sat with me and we did some pretty awesome ‘chair dancing’! I can manage a few short bursts of ‘dancing’ like that that last a couple of seconds and then I need to replenish my energy supply by resting. Do you know how good it feels and how happy my heart is that my girls will do things like this for me?
Yes I am suffering now and probably will be for some time. But that’s the way it goes with M.E. This payback will not and cannot take away from the fact that I got to see one of my best friends get married. And I got to celebrate with the people who have stuck by with throughout the last five years. It was undoubtedly one of the highlights of The M.E. Years.
Thank you awesome little body. I love you and appreciate you more than I ever did when you worked well.