Share a story – Louise

Photographs and Souvenirs by Louise’s Little Life

When you have a chronic illness like Myalgic Encephalomyelitis, every single thing you do has a negative impact on your health. No matter the activity you want to do, you have to factor in the fact that you will worsen a whole host of your symptoms, if not all of them. This is called Post Excursion Malaise or “Payback” I have often referred to PEM as the “Joy Stealer” as you feel so utterly ill that you begin to question if what you did was really worth it, as now you’re having to spend a week in bed feeling like death warmed up and like you’ve ingested lead piping because your body feels so heavy!

It’s at these moments when having something to look back on, related to the activity that caused your PEM, can have such positive impact on your mental health. Personally, PEM can often bring on my depression and make me question if the activity was worth it, even though I’ve decided it is before even doing it.

Depending on the type of outing/activity I’m doing will depend on what I have to remember it by. I usually have my camera with me wherever I go, so I will often have photographs to look back over. This is especially the case if I’m only well enough to go in the car for a drive with my lovely mum. I will take photos along our road trip & then look back over them when I’m back in bed recovering.

On the times I feel well enough to actually stop and get out of the car, I will usually try and buy a little something as a memento, depending on the place we may go to. I find a mug, a bookmark or even a soft toy can make nice little reminders and a mug or bookmark come in handy as well, since I live off tea and love reading books.

Before I became severely ill and my level of activity limited, I would of course go shopping or bring a little something home from a day out along with photographs of said outing. However, I wouldn’t always bring something home and I wouldn’t always take photos. It wasn’t really necessary as I could always go back to the place I’d been at a later date.

Then things changed; Planning, pacing, and deciding what things are worth my energy became my norm. Now having that little trinket to show for the energy I’ve spent and the reason I’m now in bed in agony for days has much more meaning and importance. I actually didn’t realise how important and positive this seemly little act of bringing something home was, until I went somewhere and returned with nothing, not even a photo to show for the PEM I was then experiencing. Pain and exhaustion were clouding my mind and I had to keep reminding myself that it was worth it and I had a nice time.

It was then that I realised how important it is to have something, either photographs or something else to remind you of the time you managed to spend out of the house. I know people reading this are probably thinking “erm you have this thing called a memory!” And while sure I can lie in bed and use my memory to remember how lovely the day was. “Healthy” me did this often…

In reality, my memory has been effected by the M.E, my short term memory isn’t great, I frequently forget to take my medication, which is something I do 6 times a day, 7 days a week. My long term memory is even worse, I can only remember small snippets of my childhood. Then there’s times when I completely surprise myself and remember some unimportant fact from out of nowhere! Now add in the effects of PEM and my memory worsens even more as the hit by a truck, hangover feeling takes over.

Imagine feeling like that and then try to remember what you did the day before ~ it’s not so easy. Therefore, having something to look at or physically touch, really can help keep me focused on the positive and remind me that what sent me to my bed with worsening symptoms was really worth it.

So if any of my fellow people with M.E or anyone dealing with chronic illness in general,  find you deal with worsening symptoms after activity, I really do recommend trying to either document your activity, even if it’s going to the doctors or the hospital, by taking a photo/s or bringing home a little souvenir to remind you that what you did really was worth the energy and worsening symptoms for the days/weeks to come.