The Aftermath of Fun When You Have a Chronic Illness

Wanting to be normal and fit in is a very common thing that a lot of people in this world want. When you have a chronic illness this can be extremely hard as on top of the mental struggle of wanting to fit in, you have your condition to manage too! You will want to go to places you’re invited to and want to do as much as you can, but this will always have an impact on your body afterwards. I had two lovely days where we took our friends out on our boat along the river. This is always a great deal of fun and extremely painful too.

• What is Ehlers-Danlos Syndrome?
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I have to start preparing for these events days before they actually happen. Resting, pacing and taking it really easy so I don’t upset my body beforehand. This will mean I cannot do certain tasks like vacuuming, dusting, taking out the rubbish or going on long walks as I have to conserve my energy and be realistic that I will probably end up in pain if I do. I will also stock up on painkillers, heat packs, heat creams, anti-inflammatory gels and more. I am getting better at remembering to splint up when doing such tasks as this will help reduce the pain in the long run. I cannot splint up all the time as this will cause my muscles to degrade over time.

We had a wonderful time pottering on the river, doing locks, driving the boat. I am the one that drives through the locks. I am unable to operate them as they will damage me and make me so much worse in the long run. I love doing the driving part though; it is extremely fun, but again, I do pay for it. Also, standing so long will cause my POTS symptoms to flare dramatically, so I either have to sit or lay down in between locks to get my heart rate under control. I will always take painkillers before we start and during the day to help ease the pain of the activity. I make sure I have a really long hot soak once we are moored up and a nap too.

Even with doing all of this, days after such events will be horrific. It will usually take a week or so to recover from having so much fun. My body will be screaming at me every time I move! If I didn’t take the precautions I did however, it would take much, much longer to recover. I will usually end up with my joints screaming, migraine after migraine, heart palpitations and more. I also have to make sure I drink plenty of fluids all the time as this can increase POTS symptoms if I don’t.

I do feel even with all of this, my pain is so worth it for having a great time. It may not feel like it at the time and I’m sure I am a nightmare to live with too when I am going through all of this. I am making memories that will last my entire life. Sometimes I will have to cancel engagements at the last minute because I am too sick. This is OK. My friends and family understand – I am very lucky in this respect. I have stopped feeling guilty so much for having to cancel plans, and this is because I know I am being sensible and listening to my body.