Post Thirteen. My Mum’s Birthday/Fundraising Party for Invest In ME.

My mum shares her birthday with ME Awareness Day and last night she held a birthday/fundraising party for Invest In ME. Instead of presents and/or cards she asked for only donations. She still has a few promises of donations to come, but it’s looking like she will have raised over £1000 in total! Incredible!

I attended the party and I don’t know how I did it but I managed to stay for three hours and had multiple conversations with my mum’s friends, mainly answering questions about how ME affects me. It was a lovely evening and a welcome distraction from the terrible week I’ve had.

I knew it was more than I could safely manage. Throughout the evening I knew I should escape to a quiet room to lie down for a rest, but I really didn’t want to drag myself away from the party. I miss out on so much already, I couldn’t bear to miss out on the fun going on around me. So I unadvisedly pushed through.

Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush. I remember feeling like this in the past, but it was easier to cope with when it was self-inflicted through an excess of fun and alcohol. All it took on this occasion was three hours of pleasant conversation the evening before.

This was the first party I’ve attended since 2014, and the first situation I’ve put myself into that I knew would involve constant interaction and conversation with people. I knew it was a risk. This is the worst payback I’ve experienced for quite a while. It’s made me realise that up until last night, I’ve actually been fairly good at pacing and managing my activity to avoid PEM (post exertional malaise). I hope in one evening I haven’t undone any progress I may have made so far. When this bout of payback is over will I go back to how I was doing pre-party? Or is this the beginning of a new phase in my illness? I have no idea. But this is something I have to think about with every single decision I make. I have to weigh up the pros and cons of everything I do. Will the boost to my mental and emotional health outweigh the potential negative and possible long lasting impact on my physical health? I don’t know. It’s impossible to know. I go into everything I do blindly.

While I’m punishing myself for my stupidity and desire to be ‘normal’ for an evening, I can at least take comfort in the fact that the charity, Invest In ME, who campaign for biomedical research into ME, will soon have over £1000 to invest into ME research. This is on top of the money raised by my friends and family in the past few weeks. I have great people in my life who are going out of their way to raise awareness of ME and who are raising money for much needed research.

I’m also quite sure that after this bout of payback fades, that I’ll only have fond memories of a lovely evening. My mum still lives in the house I grew up in, it’s a wonderful and beautiful Victorian house full of lovely memories. It was really lovely last night to see the house and garden so alive with people, chatter and music. The children played on the garden wall and surrounding trees, my niece waited on the guests in style with her bow-tie and flowery Dr Martens. The food was excellent, the wine was flowing (not in my direction obviously) and the live music was a lovely touch. And above all I’m so touched by the incredible generosity of my mum’s friends who donated their time and money, and my wonderful mum, who donated her birthday to help find a cure for ME.

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