Got plans for the summer? Going on a vacation somewhere? Maybe you're going to take your kids to an amusement park, or maybe you'll send them to camp.
I speak for an enormous segment of the Chronic Fatigue Syndrome community when I tell you that most of us won't be taking part in these kinds of plans and we tend to avoid these types of conversations. That is, those of us who see people and have conversations with anyone.
This year I am doing particularly well, and for the first time in many years, I might be able to do something summer-y. But for the last decade, the possibility just didn't exist for me, and therefore for my family.
Have a look at what summer amounts to for someone with Chronic Fatigue Syndrome.
1. We won't be going to the cottage.
For the sickest of us, leaving our homes is difficult, sometimes impossible. Neurological problems cause distressing physical sensations and vertigo. Our senses are bombarded by activity and sunlight when we attempt to go outside.
Our muscles don't want to listen to what our minds tell them to do. Our energy is insufficient for even day-to-day functions. Attempts to push through can plummet us into a CFS crash, relapsing into overwhelming symptoms that can leave us bedridden and panting for breath.
2. We won't be going out for ice cream.
Sounds like a simple outing but for many of us it is not. The effort is physically and mentally exhausting. Besides, many of us are too sensitive to the ingredients in these treats, and we can end up very sick.
3. We won't be going to the beach.
Again, the effort is too much. The sun causes severe reactions for some, affecting our vision and causing nausea.
4. We won't be going to a ball game.
I think you get the idea as to why this is not an option. Driving is beyond some of us, even being a passenger can be too taxing. Standing in a lineup can lead to collapse and sitting upright without support for a few hours can be impossible.
5. We won't be going on a picnic.
Maybe if someone else planned and packed a lunch ... but even then, energy is sapped like water swirling down a drain and then gone.
6. We won't be gardening or cutting the grass.
We might be able to watch someone else doing these things through the window. But even if we used to revel in our garden, and savored the smell and look of a freshly cut lawn ... at best this becomes a spectator sport.
7. We won't be playing golf.
Like so many cherished pastimes, golf for the avid player has entered the realm of stories about Once Upon A Time.
8. We won't be riding a bike or going for a walk.
Vertigo, along with joint and muscle pain and profound weakness puts these pleasures off-limits for many with CFS.
9. We won't be going out on a boat, or fishing.
Vertigo when trying to walk is bad enough. On a boat ... forget about it.
10. We won't be buying a summer wardrobe.
For many, living on disability, or worse, living without it, there isn't any money for this. Choosing clothes that don't stir up chemical sensitivities can be challenging. And for the person living in bed or curled up on a sofa, the fun of a new summer dress or new shorts and T-shirts seems pretty empty.
Some of us do better in summer weather, with symptoms receding. Others dread summer and humidity because their frail health plummets this time of year. When you're enjoying the summer sun ... think of us.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca and http://ncubator.ca/blogger
Edited by Alison Stanton