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Living In The Constant Unknown

We don’t ever really know what we are capable of doing safely without hurting ourselves and getting worse. Because if we are living smart with ME/CFS, we are living the no crash lifestyle and that means sticking to a routine that we know doesn’t make us crash.

Something that has happened to me is that I have developed fear about doing things that made me crash badly in the past and which I haven’t done in years. Some of this is PTSD and some of it is just learning from mistakes and being smart and I often don’t know which is which; Wether I am irrationally scared or rationally scared of doing something I am unsure of.

I currently am treating a fungal scalp infection that I developed from not washing my hair or getting any sunlight (it’s a fungus we all have on our skin, the balance is just off on my scalp) and it requires applying a medication to my scalp and face and shoulders everyday and then washing it off with wet paper towels and baby wipes every night. And washing it all off takes so much energy using baby wipes. My bathroom is right there 5 feet from me and every time I do this cleaning routine I think of how much easier and quicker it would be to just walk 5 feet into the bathroom and get on my knees and stick my head in the shower.

When I pre visualize doing it, I feel like it would be ok to do, and usually that means it would be ok. Generally, if I visualize doing something and get a feeling of strength rather than weakness it means I can do that thing. If I get a feeling of weakness it means it will hurt me.

  See this post to learn more about pre visualizing to learn your limits

But just as I was becoming bedridden in 2013 (10 years ago) I had an experience where I felt like I could get out of bed and walk across the room to move something, and i did. It took me 5 seconds, I walked 6 feet and moved the thing and walked back into my bed and I crashed really badly and got worse and have never got out of bed since then except when I get adrenaline to walk to the bathroom for a bowel movement which I do routinely and I know from experience that it won’t make me worse.

I think this is a challenge we all have to live with and struggle to figure out. New activities might feel ok to do but we don’t know for sure and we may have PTSD from crashing from it in the past that makes us irrationally weary of doing something we can actually do and would improve our lives. But at the same time it is smart to not do things that hurt us in the past and be hesitant about it because it may indeed hurt us the same way it did in the past.

I’m honestly just really scared of leaving the confines of my bed because I have a safe life carved out here.

We never know for sure. I lean towards not doing things that may hurt me because it’s not worth the risk. i’d rather spend the time cleaning myself with baby wipes then try to make it easier for myself and get worse and maybe not be able to walk to the bathroom for #2 anymore which would make my life so much worse having to use a bed pan which is awful and messy and gross and degrading as I’m sure many of you know.

We have to constantly live with these unknowns surrounding us when we have any level of ME/CFS. Sometimes we just don’t know if something will hurt us or not and we have to be smart and often just do less than we are actually capable of in order to make sure we don’t get worse.

This is something healthy people really don’t understand and a pattern that leads to us being judged as "lazy" because we are careful about not doing too much. It is actually self preservation, but to someone who doesn’t understand the illness it can look like we’re just not doing things we could "easily" do. They don’t know about the devastating consequences of doing too much and how difficult it is to figure out where that line is when it is something new or unknown.

Being able to walk to the bathroom to wash my head and face would be life changing. But not being able to walk to the bathroom anymore for #2 would be so so much worse than just using baby wipes in bed. So I stay in bed and use the baby wipes which takes me like an hour instead of 10 minutes. And makes me so tired and drained from scrubbing with my arms.

This is just one example, but there are unknowns like this everywhere. I have a world in my bed that I know well and know will not hurt me. If I stay in my bed and stick to doing things that feel ok to do when I pre-visualize them, then I don’t get worse. Who knows what I am actually capable of doing. Could I walk the 6 feet to my sliding glass door and lay down on the porch outside this spring? That would be incredible! But I’m not going to take the risk to find out because the consequences of it hurting me and making me permanently worse or worse for 7 years are just not worth it.

I got worse for 7 years and lived a literally hellish existence before Ativan and Abilify rescued me from the abyss to a more livable hell where I can at least communicate and move in bed. I got worse from doing too much for one day too many when I pushed myself to be a part of the film Unrest after several days of pushing myself to deal with new health challenges related to my stomach that I had to deal with. I felt and knew I needed to rest that day, but the film felt so important to me and I pushed myself again and fell off a cliff into hell. So I know that single actions can lead to devastating health situations with ME/CFS. One mistake can change your life for years and years. This is legitimately scary if you have any clue as to what having ME/CFS is like.

Sometimes I think that getting better is just as challenging as getting worse with ME/CFS. Because we have to be so careful not to do too much and when we get a bit better we are in uncharted territory. We don’t know how much better we are and we can’t fall back on any past experience or routine to know how far to go or how much to do. We have to just take tiny baby steps and see how it affects us and then go from there to additional or fewer baby steps.

The worst thing we can do is get worse trying to do more to make our lives better because getting worse will make our lives so much worse than any new abilities would. But we also need to try to do what we can. We can’t succumb to fear and never try anything new that gives us that feeling of strength when we pre visualize doing it.

There’s no great answer and there’s no peaceful or safe way to go about this. It’s just scary as hell and requires extreme patience and diligence as well as awareness of our bodies.

For now I am going to stay in my bed until something happens that proves to me that I can get up and walk to the bathroom without the adrenaline from a bowel movement. It will be hard to do this every night as I am painstaikingly scrubbing my head and face and shoulders and neck with baby wipes and wet paper towels. But I want to play it safe.

I thought you would all relate to this struggle.



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