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Balancing Needs vs Limits

So often with severe ME/CFS, we have to decide between getting what we need, and not pushing past our limits.

There are so many times when getting what I need requires going past my limits and I have to choose one or the other by trying to decide which is worse for me; Putting up with something that is risky, actively hurting me or making me worse, or pushing past my energy limits to fix whatever the problem is. The more severe I was and the lower my energy limits were, the more of these situations I found myself in. When I was at my worst and could not communicate in any way, I had to make many of these decisions every day; Deciding between hurting myself trying to communicate about something in my routine that was hurting me, or putting up with the hurt it caused me.

These decisions are excruciating, especially when I was extremely severe. I would lie in bed trying to think of every possible way to communicate a problem using wadded up paper towels, or paper towels folded into arrow shapes (the only way I could communicate when I was at my worst) and every way I could imagine it being interpreted by my parents. And I would try to figure out how bad this would hurt me and weigh it against how bad the problem itself was hurting me. And I would try to be rational and not let stress about the problem get in the way which was very difficult. It’s unnatural not to stop people or situations that hurt you. But sometimes I had to decide to put up with it because trying to communicate the problem would make me even worse than the problem. The worst part was that usually when I decided to try to communicate, my parents did not understand like I thought they would, or they would misinterpret my signs, and it would go on for hours with me desperately trying different patterns of arrows and paper towel balls and it would wind up hurting me way worse than the problem I was trying to fix.

These decisions begin being forced on you as you get more severe and simple activity or communication puts you over your energy limits.

It causes so much suffering.

My Jtube just broke. There’s a balloon just under the skin that they fill with saline when they put the jtube in to keep it from pulling out. It cracked and part of it is sticking out of my stomach. Which means there is nothing stopping the tube from ripping out if it gets caught on something, which could be a dangerous mess.

But I’m really not doing well right now. I’m sleeping 24 hours straight every time I sleep, and tired and out of it when awake, unable to think clearly or exert myself at all. I’m afraid of what would happen to me if I went to the hospital right now, even with Ativan to calm my nervous system. So my mother called the hospital, and after they first told me to come in the next day to have the jtube changed, they agreed to just have me push it back in and tape it down and be careful.

So this time I’m taking a risk that something much worse than a trip to the hospital won’t happen so I can avoid going to the hospital when I’m in a low period of health. If I’m lucky and play my cards right, I will get better and be able to go to the hospital to have the jtube changed when it won’t hurt me. If not, I will really regret not going now and who knows what might happen.

There’s no way around these decisions, or any way to make them easier. We just have to do our best to think through the possible consequences and do what we think is our best option. And when it goes terribly wrong, we have to forgive ourselves because we did our best.

No one could do the right thing every time. We are always going to mess up sometimes and wind up getting worse than if we had made a different decision. But that’s not our fault. It’s part of being human.

When this happens we have to remember that it is not our fault. ME/CFS is causing this to happen, putting us in these impossible situations. So blame the monster, remember we are doing our absolute best and let it go and keep going.



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