The one with the wedding (2)

In the morning, thankfully, I could still move a little, unlike Aug ’12 where even with meds I  totally seized and was in acute pain. Thankfully not repeated this time. Mum helped me get ready, and we got on the road south, arriving at the church my parents attend in plenty of time before the later service. Their friends were beyond lovely to me, the worship refreshing, and the sermon solid, restoring me, even in the midst of my fatigue. By this time, my lack of medication was .obvious. I spasm-ed from my shoulder, all down my right arm continuously, all through Sunday. This meant any simple activity was even more difficult than usual as I was very shaky. Amazingly, no one seemed to notice, or if they did, they did not say so. After the service, lots of people came to say hi over a cuppa, which was great, although getting to the tea was tough.  My Dad lifted the cup to my mouth so I could sip it safely. Once there was a third of the cup left, I could just about manage it on my own, while my parents went to talk to people they needed to see.

After church, my parents drove me to their house for a yummy lunch and a second cuppa before driving me home. It was lovely to see where they live as now when I think of them, I can picture then there, instead of in the old house. The journey home was less than pleasant as not only had I run out of ‘spoons’ but my most embarrassing medical condition kicked off. When I got up that morning, I began to feel steadily worse. Once I returned home, I was unwell for hours. I think this was partly ‘payback’ for the exertions of the weekend, needing to be at my best on two consecutive days, meaning ‘pacing’ was impossible, that is staggering activity with appropriate periods of rest.

By the time evening carers arrived, I was a giggly mess, barely able to stand from exhaustion and the hours of illness earlier too. I sort of collapsed in on myself, glad to hand over basic chores to someone else. If I had no spoons earlier, I had nothing left now. Fellow #spoonies, I bet you recognise some things in the last 3 or 4 paragraphs. When I am so completely at the end of myself, I remember I am not the only one who knows how that feels, and it makes me feel better. Problem also was I was too tired to sleep and was several hours before I could. The next day, I was full of ‘payback’ fatigue and my speech had become incomprehensible… or, if you ask #maincarer, “What’s up with you Jack?! You are full of more s*** than usual!!” This made them very concerned about me, as they said they had never seen me so bad before, so I tried to explain about ‘running out of spoons’ and ‘payback’ fatigue: I have only very limited energy, always, which can be measured in spoons. Use all my spoons in one go, and I am in trouble; push beyond that, and I am in the kind of mess you see now – because I gave everything I had to be able to survive the weekend, this showed on Monday in poor speech and not being able to do much at all (known as ‘payback’).

That night, I slept soundly, but was awake at 5am with an unquenchable need to write. I began by using day 2 of Robin —-‘s book as a prompt, but once I had begun writing from that, about things like fatigue that stop me writing, I then felt unable to stop writing! At least it meant this post was written while it was so fresh in my mind.

I now have days of catching up to do, energy-wise, so was all the effort worth it? Entirely so… I did have to put my best face on which is tiring in itself, but I had an amazing weekend and met so many great people, as well as enjoying being able to see my friends get married, and check out whether “my mum and dad were behaving” as one of their church friends put it. I not only survived, but thrived, and for that I am thankful to those that were praying for me and to God who enabled me – with help from my Mum!

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