Gone are the times when the only consequence of a day out was the possible dent in my bank balance and the hangover I was likely to get from some adult beverages. Ah, I remember fondly the times of an impromptu day out with friends into the city or heading off for adventures in the car; these are now a distant memory. Nowadays, since my chronic illness showed up in my life, the consequences of a day out are a lot more than worrying about my bank balance. There’s the sheer exhaustion and pain, the social anxiety, and so much more that has to be considered before agreeing to a day or night out.
Before The Fun Begins
Since my illness began, days out take a whole lot of planning and preparation. I need to know where I am going and who will be with us. Recently I went into Edinburgh during the fringe festival to see the ladyboys of Bangkok. I do this every year; it’s become a little tradition that I do with my mum. In the run up to the day I try to make sure I do as little as possible in the attempt to make sure I’m not too sore or fatigued to go out. I’m sure that many of you know that with our various chronic illnesses our intentions don’t always work out according to plan. There have been times where I’ve been too sore, tired, or anxious to go on a day out. This year the days running up to the show were a little busier than normal with family events. We had a wedding on Saturday which in itself used a lot of energy, but thanks to my husband I was able to rest on Sunday. Thankfully on Monday (the day of the show) I was feeling okay and was really looking forward to it.
We went into Edinburgh in late afternoon. Normally we get taxis from the train station to the venue, but this year we decided to walk as it wasn’t too far. We met the others from our group, had a bite to eat, and watched the show where we sang and chair danced along. During the show I could feel myself getting a bit a little uncomfortable (after walking to the venue and sitting on uncomfortable seats for an hour and a half) but my mood and energy was hyped by the atmosphere and the music. We walked back to the train station where we had to wait nearly an hour for our train home. As we waited I could feel my body starting to seize up with stiffness and a wave of fatigue washed over me. I so desperately wanted to be at home in my comfy clothes snuggled up under my duvet.
The following day, after a very restless night, I woke up feeling terrible!! I was so stiff and sore. Walking was so difficult that if I wasn’t so sore I might have had a good old chuckle at myself. My energy levels were so low I felt like a zombie. I told myself that such a great time was worth all this pain and discomfort and that I would be okay in a day or so. I expected a certain level of pain and fatigue. That’s what comes from having this illness for so long. I knew that I would have to be kind to myself and take it easy for a few days. Not always easy to do with a toddler who is constantly on the go and climbing all over me but I made sure that he had things to do, I made myself comfy on the sofa and waited for the pain to ease off a bit.
It didn’t ease off though. By the second or third day I knew that the consequence of having gone into Edinburgh, having fun and all the walking, was going to be a flare up. I knew that I was in for a tough time. I wasn’t able to get comfortable. Nothing was helping to take the edge of the pain. I was miserable. I swore that I would never make plans or leave the house again.
No Longer A Hermit
Thankfully I came to my senses and haven’t shut myself away from the world. I am however still flaring. Is it from going to Edinburgh? Possibly not, as there are other things happening in my life, but I’m still not feeling like my normal self. I’ve reached that point in this vicious cycle where I realise that I cannot lock myself up and not do anything. I need to remind myself that if and when I do have plans to not over do it, not to rush here, there, and everywhere, and to be prepared for some consequences because the memories made are worth it. As chargies, the price we pay for such things is greater but I know from my own experience that I need to find a way to truly live my life and not just exist. If that means once in a while I’m left feeling like the tinman who needs his joints oiled then so be it.
About the Author
Nicola Ogsten is a blogger who writes about chronic illness, disability, and parenting. She lives in central Scotland and is trying to share her chronic illness journey with the world.