Friday, 21 August 2015

Awful Adrenaline

I had my first fall a couple of weeks ago. I'm not entirely sure how it happened. One minute I was standing up and the next I was in a little heap at the bottom of my friend's garden steps. As chance would have it I'd had a chat to Mr Tree Surgeon only days before about what might be best for him to do if I should ever fall. My knees try to give way with every step on bad days so falling has always been a possibility. I always cling on to the banister when coming downstairs too because my dodgy vision and the feeling of being off balance don't make you feel all that confident about navigating your way sometimes. 

So the fall. Luckily, a few days before, I'd told Mr Tree Surgeon it was probably best not to try to pick me up straightaway. Best to let me get over the initial shock a little bit. He did exactly that. After throwing both his beer and his phone onto the floor to get to me(!) he then sat with me for a few minutes while I 'came too'. I couldn't speak. Shock does that to me - the shock of waking up in the morning does that to me. 

I'd scraped my arms and legs, and bumped my head. The bruises turned out to be quite disappointing actually ;-) but they've lasted a fair while. I was impressed by my body's ability to form scabs though - a couple of years ago I had to see a haematologist because I couldn't stop bleeding when I cut myself. That was a fun time!

I didn't cry. Perhaps because crying is so exhausting or because my friend was there or because I'm super brave. But we had to leave sharpish afterwards. My pain threshold is ridiculously low now and pain is so draining. The rest of the evening wasn't great. I felt a bit sick and very shaken up and fragile. 

Shock and adrenaline are not my friends. At all. If someone accidentally makes me jump by coming up behind me for example, my heart rate increases, my breathing changes and becomes laboured, and my legs get weaker. It's quite bizarre. Alas, adrenaline is like poison to me. And it is hard to convince my Broken Brain that once mainstream and normal events, such as the noise of the doorbell, do not warrant such a huge release of adrenaline into my system. It can actually feel it being released! It's quite amazing really.

Contrary to the belief's of some though, me falling over is not funny. If I was well I would have undoubtedly laughed it off, and I did actually. But falling and suchlike painful events have terrible consequences for me and my dodgy health. The effects last long after I've been picked up and brushed off. The adrenaline can leave me drained for days afterwards.

I'm okay. A little more wary of stairs and steps perhaps but thankful to still be in one piece, albeit a slightly battered and bruised one. 

Monday, 10 August 2015

The Most EPIC Adventure of Anna Jones

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.