I read an excellent article this week entitled ‘I Won’t Apologize for Having Fun While Chronically Ill’, by Denise Reich for The Mighty. I had planned on writing a similar post myself but she says it so perfectly and it fits in well with what I want to write about today. So here it is… (and you might want to read this first).
This week I did something fun, and nope, I’m not going to apologise for it. But I will let you know what happens after the fun is had. What the consequences are for me. What I know I’ll have to go through afterwards.
It’s Sigur Rós day!
On Tuesday I had my first night out for nine months. I saw my favourite band, Sigur Rós, who were performing at the Edinburgh International Festival. I haven’t had a night out since I saw another of my favourite bands, Agent Fresco, in Glasgow last November.
This concert wasn’t just about doing something fun and seeing my favourite band though. It was a chance for me to feel normal. To have a taste of my pre-ME life. It was something for me to look forward to. I ‘need’ something to look forward to. Something that will keep me going on the bad days. It was also a gift for my mum. Because two hours of live Icelandic post-rock is obviously the perfect way to thank my lovely mum for looking after me so well! 😉 (She does like Sigur Rós, FYI, she wanted to see them, really.)
This was also my first visit back to Edinburgh since I moved away to be closer to my mum (just) over a year ago. I planned a perfect Edinburgh day. I had my heart set on spending some time in Princes Street Gardens, in my favourite spot below the castle, sitting on the grass, with a coffee. Something that I used to do on almost a weekly basis, but hadn’t done for well over a year. So, that’s what I/we did, only for an hour, but it was lovely. I did have slightly worse than usual lower-abdominal pain, but pain is my new normal, so that wasn’t a big deal. Then we got a taxi along to the venue, Edinburgh Playhouse, where we met two of my friends. Just being in the theatre was exhilarating (theatres feature quite prominently in my previous life). This was my fifth Sigur Rós concert and it was as incredible, loud, powerful, emotional, visually stunning and awe-inspiring as I anticipated. Hearing my favourite song, Starálfur, live for the first time was unforgettable, (and may have made me cry a little bit). It was the most ‘alive’ I had felt in a very long time, and I really needed that reminder. I was in a massive Sigur Rós daze on the bus journey home and well into the night. I went to bed feeling very happy and very content.
The next day and it’s time for my punishment to begin…
I knew I was going to suffer payback* for my over-exertion. In this case I decided the emotional benefits of seeing Sigur Rós and escaping my everyday existence for a few hours would be worth it. (Today, I’ve been re-thinking that somewhat, but that will pass). So, feeling unwell the next day was inevitable. The next again day however I didn’t feel too bad, I had a fairly ok day of cooking, resting, listening to music, resting, re-watching Gilmore Girls and more resting. Of course I immediately think ‘this is progress, the payback hasn’t lasted that long, maybe I’m getting better, maybe I can start going into Edinburgh more frequently!?’ But no. Today I feel the worst I have in a long time. I can’t remember the last time I have felt this bad. It’s proper ME stuff today. So weak I can’t hold my head up. Completely drained of energy. My limbs feel like they’re made of whatever the heaviest substance in the world is. My brain is foggy. I’m disoriented. I can’t find my words while talking to my mum (who popped round with my shopping, then again with a comfier pillow, I told you she looks after me well). I can’t stand for more than a few minutes. I’m nauseous. My head hurts. My throat is sore. I feel I’m on the verge of fainting. I’m warm like I have a high temperature, but I don’t. I’m forgetting things. My arms and legs ache like they did after I did my first Body Pump class. My skin hurts. My face/sinuses hurt. I’m unbelievably tired but I can’t sleep. My eyes are straining at the effort of writing this.
This, unfortunately, is my reality. This is what I have to look forward to if I push myself just a bit too far. Sometimes though, I don’t know that I’ve pushed myself too far, not until it’s done. Often I can feel it coming, my body will warn me, and I’ll know to slow down or stop, but not always. There are times I have no choice. If I’m in the middle of washing my hair, I can’t just stop mid-hair wash, with shampoo still in my hair. Or if I have a deadline in regards to a benefits application, in that case I have to just push myself through it. Then of course, very occasionally, like with this concert, I knowingly push my body beyond the boundaries of what it can comfortably manage. I wonder if you can imagine knowing that you will feel this way, to some extent, after every activity you do? I’m not just talking about the occasional, once every nine months concert, but after having a bath, watching a film, emptying your bins, changing your bedding, having a phone conversation, going out for a coffee, making breakfast, filling out a form…
I also have the added dilemma of knowing that over-exerting myself is bad for me, not just in the short-term, but the long-term too. There is no way of knowing this for sure, but every time I decide to, or have to push myself, I am aware that I may be risking lasting damage. I usually do play it safe. But if I only ever play it safe then I won’t have much fun in my life, I’ll miss benefits deadlines, I’ll miss hospital appointments, I’ll never see my friends or family.
I know that once I recover from this bout of payback I’ll only remember the good bits of the week. And the highlights of this week are definitely better than most. I’ll be pleased that I went out, felt normal and had fun. It will feel worth it, even though I knowingly did more than what my body can handle. Because sometimes I have to. How else am I to keep my spirits up.
* Payback, also known as post-exertional malaise, is a symptom of ME. But it gets worse, it’s a symptom made up of lots of symptoms. These symptoms can differ from ME person to ME person and may appear immediately after the activity or after a period of delay, and may last days or weeks.
PS My mum loved the concert. 🙂