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Feeling Ill in Summer

Feeling Really Ill in the Summer
This week summer hits London full force and while just about everyone I know is excited and looking forward to revelling in the sunshine, I have entered full scale survivalist mode. I’ve written about reverse SAD or the summer blues before, so it won’t come as a complete surprise that I don’t look forward to the summer months. However I’m currently in the middle of a relapse so I have to be really careful in the heat as it could have serious health consequences for me. I have some friends with ME who thrive during summer. This is the time of the year that they feel the best and I even have one friend who spends time abroad during winter just so her health is not adversely affected by the cold. But what about the rest of us who relapse every summer? Here I talk about how the heat and light affect me and what I do to survive.

Summer Sickness

This weekend I had to go across the road to the supermarket and pharmacy. I will be alone for the next week so can’t rely on anyone to pick up food items for me on the way home and even if a heatwave had not been forecast for the coming week, I would make sure I had everything I needed just in case I’m unable to get out. I decided I would go very early o+n Saturday morning when it would be cool and I could avoid the heat and the crowds. The trip went well and I got everything I needed. However, just after lunch I was hit with the most overwhelming fatigue. I had to lie down. I spent the rest of the day passed out in bed, barely able to get up and eat dinner. Sunday was pretty much the same. I find it impossible being out in the sun for very long. This weekend was extreme because I don’t usually get knocked out like that, especially when it is not even that hot, but here are some of the symptoms I experience after as little as 10 minutes out on an average summer day:

  • Light Sensitivity or Photophobia: Light has been an issue for me anyway, so I’ve gotten used to wearing sunglasses since I became ill in 2001. But when I’m out in the sun, brightness can be too much even with shades on. I bought a pair that is very dark and wide, so not much light gets in around the sides. However, I fear I need wraparounds.
  • Heat Intolerance: I am not good with heat. I do not even use any heating in my home during winter and find it very difficult to visit friends and family during the colder months as their homes are way too hot. So, venturing out on a summer day is a nightmare. I feel consumed by fire and my skin itches and burns. There are also a number of other symptoms which I think are related to the heat intolerance and I’ll talk about them next.
  • Dizziness and Headaches: The dizziness comes on very quickly when I’m out in the sun and I find myself feeling extremely light-headed. Even a short time in the bright light and heat causes headaches for the rest of the day.
  • Fatigue: The summer months are when my fatigue is the worst. Even if I don’t go out, the raised temperatures make me feel sluggish and weak. Everything seems harder and takes more effort and energy. I keep my flat very cool, but I feel the most comfortable in the cold.
  • Nausea and Vomiting: Nausea is a real problem in summer. Sometimes, no matter what I eat, I throw up too, but luckily (if that word can be used for anything to do with illness) it doesn’t happen too often.
  • Dehydration: This may be due to the medicines I am taking, but I find no matter how much water I drink, and I do drink a lot of water, I still feel dehydrated. I’ve had diabetes checks, but I am not diabetic, nor do I have any other health issues that could be causing the thirst. I recently went to see a dental hygienist and even she commented on the dryness of my mouth.

The Sun is Good For You, Right?

No matter how ill I get in summer, I still get friends and family telling me that I need to get out in the sun. My own mother, who has seen me suffering in the heat and light, often tells me I need to move out of my basement flat to a place that has more light. After almost a decade and a half with this illness, I know what makes me worse and what makes me better. I get tired of hearing how I need more sun, more light and more heat. However, if ME has taught me anything, it is the patience to endure the unhelpful and totally unfounded recommendations of well-meaning people.

How to Survive the Summer

I try to stay cool and out of the light. I also know that it takes me a lot more effort to get the same amount done during the cooler months, so I have to be extra careful not to over-exert myself. Well, that is all I have been doing the past few years. But it is not good enough as I am forced to leave the house and it is not always easy to escape the heat.

I have recently been doing a lot of reading on adrenal fatigue and mitochondrial function. I read that many people have found that water alone is not good enough and can actual cause more problems and what is needed is electrolyte replenishment.

Do you have increased health problems in summer? What do you do to survive feeling ill in summer?

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Fevre Dream and Sleepless Nights with a Touch of Reverse SAD

Fevre Dream

It’s been a couple of weeks since I last posted and what a couple of weeks it has been! I wish that was because the fortnight had been so wonderfully busy, but actually the opposite is true. Recent exertions have really taken their toll on me; I’ve had to make a couple of trips to see my family. One was to go and see my dog and the other because one of my sisters had an announcement to make to the whole family (I’m going to be an aunt!). Both trips were great, but the effects have been too much to bear. I’ve been so exhausted and in pain; the slightest activity is having a profound effect on my health and taking a ridiculous amount of time to recover from. More than anything, this has left me feeling so down; can’t I do anything fun without having to pay for it and when the hell did my health get so bad again?

As if all that wasn’t enough, I’ve barely been sleeping. I think that is to do with the fact that the days are getting longer and spring is almost here. It may sound strange, but I have reverse SAD so my favourite half of the year has just ended. In an attempt to stop myself from totally sinking into depression, I decided to try and lose myself in fiction. I don’t get the chance to read for fun these days; when I do have some free time and energy to read, I tend to read mostly non-fiction books that are guides or manuals.

So far I’ve managed to complete one book Fevre Dream by George R. R. Martin. I love vampire stories, but do not like historical fiction, however I enjoyed this book so much that it inspired me to write a book review, and that helped me to get back into writing again. But after I had written it, it got me wondering, what do other ME sufferers do to prevent spiraling into the ever threatening darkness that accompanies this illness? I was lucky this time, I was able to read, but there were periods in my past where I couldn’t read because the resulting headaches and eye pain was too much even for an avid reader like me. Then I would listen to audio books or watch DVDs of my favourite shows or movies.

If you’re an ME/CFS sufferer, is there something that you do to keep the worst of your illness pulling you down? Are there people that help you? Are there books and movies that bring comfort and distraction or is there something else that you do? I’d really appreciate the extra ideas as I have a feeling I may need to branch out into a few other areas if my health continues the way it is.

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