The ME/CFS Ghost » 29 December 2014

Daily Archives: 29 December 2014

Paying For Christmas

Post Exertional Malaise (PEM) or Postexertional Neuroimmune Exhaustion (PENE)

When you mention paying for Christmas, most people will immediately think of the credit card bills that are soon to show up. However, for people suffering from ME, there is an entirely different payment due. When a person with ME partakes in any kind of activity, they suffer from something called Post Exertional Malaise (PEM) or Postexertional Neuroimmune Exhaustion (PENE). Some people end up paying weeks later, as the exertion credits accumulate, but for me I usually pay the price 24-72hrs later. In that time frame, I just feel worse and worse, and find myself being able to do very little if anything.

PEM or PENE is probably one of the hardest things for non-ME sufferers to understand. You may have seen your ME sufferer friend or loved one look fine on Christmas day, but when you ask to pop around the next day, or invite them out for lunch the day after that, not only do they refuse, but you can’t even get them on the phone to speak to them.

This is because most ME sufferers spend each day performing a careful balancing act of not exceeding their physical limits and making sure they get adequate rest. Spending Christmas day with family members blows that balancing act out of the water. The exertion is not just the physical activity, although that in itself can have a huge effect, here’s a list of other factors that may have overloaded the ME sufferer:

  • Speaking: Maintaining a conversation or even multiple conversations can take a lot out of an ME sufferer, and it is one of the reasons I rarely, if ever, speak on the phone. It’s just not worth the effort it takes.
  • Thinking: Continuing on the conversation path, when you speak to someone, you also have to think of what you want to say, and this takes up energy. ME sufferers often experience cognitive problems, so our brains can get a little foggy when called upon to even do something as simple as talking.
  • Noise: I spent one Christmas with only four adults, one child and a dog and I was so overwhelmed by the noise. I just couldn’t relax and for most of the day I felt like all my muscles were clenched as if I was in a real state of stress. They were not particularly loud by normal standards, but I found the noise extremely jarring.

The video below is a vlog entry by documentingme in the midst of a post exertional period. As she explains, she did not go out or even do anything physically, but had a friend come and visit for a few hours with her dog while she rested on the sofa.

After a period of activity it is really important for the ME sufferer to get adequate rest. This means proper rest. Here’s what Dr Myhill says about proper rest: ”By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All these count as activities which have to be carefully rationed through the day.”

If you’re an ME sufferer who is paying for your Christmas activities, firstly I hope you had the best time, if you didn’t, don’t worry, just spend time resting now. I know it’s not always easy to do, especially if you have children or have family staying over. But take advantage of whatever time you can and REST! If you have a complete relapse it can take you weeks, months or even years to recover from that. I had my last big crash in 2011, when, after over-doing it at work, I then REALLY over did it with my sister’s wedding. I should have rested but I didn’t. Here, at the tail end of 2014, I have yet to get back to my pre-crash level of energy and health.

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