As last week drew to a close I felt physically and emotionally drained. I knew it was more than just the ups and downs of dealing with chronic illness and on Saturday something hit, and it hit me really hard. I realised what it was my mortality, now my family may wish to stop reading at this point.
I’ve had my headache for 946 days, it’s been 8 months since I was diagnosed with PoTs and just over a month since I was told I formally had Hypermobility syndrome. I was getting dressed and looked in the mirror and realised for the first time I now really looked sick, I’ve lost 80lbs in total, that’s 40% of my original body weight!! That frightened me, now with a gastroscopy planned in the next 24 hours that is so urgent they are scaring me and being totally unable to tolerate solid food, I just became aware that I need fixing and fast or I’m going to die. It made me cry. I don’t want a camera down my throat, I can’t get food down there so how can they get a camera? I’m terrified but I have to go through with it, so they can mend me.
So I woke on Saturday crying just quietly at 5am so I wouldn’t wake Andrew and laid there thinking about all the thinking I really should do. I really should get everything straight and in order “just in case”. Then my mind went into overdrive we don’t have wills written so that was next on my to do list. So as the birds were waking and Andrew was sleeping I was thinking about my mortality and how it’s time to get my life in order, say my sorry’s, fix my mistakes and stick my two fingers up and those that really don’t matter, because this illness has taught me there are plenty of those out there!!
Once the day got going I told Andrew I didn’t want to be on my own, he was ok with that, so I sat with him all day once his day was done we headed off for an evening together. We got in the car and during the journey a song came on the radio by John Legend called All of Me. I always listen to the lyrics of a song and these struck a chord, for now this will be a bit of an “our” tune and as we trundled up the motorway tears rolled down my cheeks. I was an emotional wreck but I couldn’t explain to Andrew why (if you read this baby sorry x). We got to our destination and enjoyed a couple of hours, again together, I was in a wheelchair and the whole time Andrew was worrying whether I was warm enough, did I need drink, food etc. Really just being my carer rather than my partner, how times have changed! Then the time came I was too cold and we had to go, we said our goodbyes and left. It had been a lovely but tiring evening.
Our Sunday had been planned for a few weeks DD bought Andrew tickets to see Katherine Jenkins at Stoke Park. So our plan was for me to rest all day so I would be well enough to enjoy the concert. The day went well I really didn’t do anything a lot of bed rest whilst Andrew fussed around me. Eventually the time came to head off we arrived at Stoke Park at 5pm and went and sat in the gardens enjoying the sun. Andrew had a beer and pizza, I’d pre-packed my complan still unable to tolerate solids 😉 As the concert started the sun was setting behind the stage it was the most glorious setting. Andrew tucked me under blankets and coats in my chair to keep me warm, not wanting me to catch a chill. I was mesmerised by her singing and gripping Andrews hand never wanting to let go, I wasn’t feeling very well, but nothing was making me leave this magical show. As the night drew to an end I was really grateful that DD had bought such a thoughtful gift for Fathers Day, so that I could spend quality time with Andrew. She knows how much it means at the moment, so thank you Katie xx she picked us up from the venue and I was soon warming back up in the car.
As I went to bed last night I thought I know it may be nothing, I may be totally jumping the gun, but even if I am a bit of lifestyle housekeeping might do me some good. So this week will involve some letter writing, a lot of phone calls and getting my house in order but most of all it will be spending quality time with the people I love the most and telling them just how much I love them x