Living the Half-life of ME/CFS

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Jody Smith relates how tiny victories helped her regain a life despite her limitations.

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What is it about situations that are unfamiliar that make our brains feel lumpy and our bodies feel like they are moving (or trying to) in another dimension?

When I was at my sickest with ME/CFS, this wasn't much of a problem, because I was spending most of my time hugging my bed, trying not to fall off the world. When I got a bit healthier, the unfamiliar began to present a new kind of problem, needing new strategies to be worked out for daily survival.

For instance, when I was once again able to dress myself and venture outside of my house, stepping out of the front door was just the first of a series of overwhelming challenges. That year, my goal was to try to go back into the little library of my town.

The last time I'd been in there, I experienced an ME/CFS crash. At that time, I had no idea how to handle such a thing. I'd gone down the stairs to the children's section with my five kids, ages four to twelve. They were browsing through books, and I was, suddenly, trying not to fall down.

I gave them a few minutes to find books, trying to breathe without my heart exploding, and staggered out of there with kids and books in tow. We went home, and I collapsed on the couch for hours.

I didn't try to go back for several years.

By the time I tried another foray to the library, I had learned a few things. My husband Alan drove me there, and waited in the car for me. I held onto the railing, and dragged myself up the stairs into the building. I walked very slowly, and fumbled my way through a few of the rows of shelves.

I didn't even try to look at book titles. The goal was simply to walk in and walk out under my own steam. The floor felt unstable under my feet, and the walls and bookshelves seemed to move in on me. By the time I was heading back out the door, my vision was fractured, my face and arms were numb and tingling, and my feet were shuffling as I hoped they knew where they were going.

Back in the car, I closed my eyes and melted into the seat, while Alan drove me home and saw me off to bed for the rest of the day.

But I'd done it. And the next week I did it again. On my next trip, I took out a book. Al carried it for me, and helped me down the library stairs. I felt like a hero.

The thing that "normal" people don't get, is that none of this hallucinatory weirdness was from shyness or deep-seated aversion to this library. This had been my favorite place when I was a child, and it was still a place I loved.

I wasn't afraid of the people. The librarians were friendly and helpful and would have done anything I asked. For example, when I couldn't fill out my new library card because of tendinitis, the librarian filled out everything but my signature. She was kind to someone who seemed fragile, as I knew she would be.

It's not agoraphobia - more like vertigo. It's not anxiety. It's full-blown paresthesia, POTS, orthostatic intolerance, and who knows what else. There is no element of psychological or emotional ambivalence.

I don't know what the physiological dynamics are, but I do know they are physiological. I was a very outgoing, sociable person who had gotten used to being in charge when needed, and who also enjoyed sitting back and watching other people shine. I had led a county-wide homeschooling association, ran departments in my church, and had a life that was branching out in many directions.

That person went into stasis when my body stopped cooperating, but she wasn't gone. I didn't become someone else. My mainframe simply couldn't support the kind of activity it used to in the past.

So I learned how to live the half-life. By this I do not mean "half-life" according to the medical or scientific definition. I just mean ... it's not a whole life. But I can't let the fact that it isn't whole stop me from going for it whenever and however I can.

People, at times, may think they are looking at someone who is timid and a little slow, but that's not the way it is. Instead, what they're seeing is someone who is determined to take as many tiny steps at whatever rate will keep me within my safe parameters.

They're seeing someone who is intent on regaining as much of her life as is possible. And if it has to be done slowly with long breaks between steps, if she has to "deja vu" the steps until they are so familiar she could do them in her sleep, then so be it.

All of us move at a different pace. Sometimes the pace can be so slow as to seem like nothing is happening at all. But that doesn't make the victories any less significant, in fact they may be more stellar when they are at this basic survival level.

Our short-term goals are all highly individualistic. One person with ME/CFS might be thrilled at getting dressed before bedtime. Another might be able to spend a day with their kids. I have achieved these particular goals more times than I can count, what with crashes and setbacks.

I have been lucky enough to be able to move on to bigger goals - taking on new freelance work, going to visit a friend for the afternoon, having company for the weekend... Last weekend, I was able to be present for my daughter's wedding and reception, with nary a crash before, during or afterward.

It would be nice to be able to assume from this progress that things will just escalate to bigger and better victories. Of course you and I know that there are no guarantees.

I do know, though, that whatever state I find myself in, living the half-life is still the way to go. It is the way to re-stabilize, to gain more energy, and to step into new things. As long as I do it by slowly and repeatedly making the unfamiliar more familiar. Because for some reason, the unfamiliar throws my body and brain into a tailspin.

How do you handle the half-life that is ME/CFS?

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Great article. I can relate to this. This reaction
became an increased awareness of new events
after awhile. The uneasy feelings were replaced with
the excitement of experiencing something
new.

Maybe there are brain functions that we stop using due to illness that
just need to be restarted. Like you, dietary changes made
a huge different in my brain function. I suspect gluten
was causing many of my symptoms. tc .. x

 

Great article. I can relate to this. This reaction
became an increased awareness of new events
after awhile. The uneasy feelings were replaced with
the excitement of experiencing something
new.

Maybe there are brain functions that we stop using due to illness that
just need to be restarted. Like you, dietary changes made
a huge different in my brain function. I suspect gluten
was causing many of my symptoms. tc .. x

xchocoholic,

It has something to do with brain function I think. I have no medical background so I don't know if there's any support for this idea or not. I have always suspected that there is some type of nervous system dysfunction. That the things that are done "on automatic" through a normal day, the things we do without having to think about them, we know where our stuff is ... our senses don't have to guage how far it is to that chair, our eyes don't have to adjust to different lighting, our ears don't have to handle different levels of noise ... When I had vertigo, and my proprioception was out the window, I had this "thing" at its height.

I think when my body could go through the day on its default settings, things were okay in this regard. Throw in some new sensory stuff and things went haywire.

I also think that perhaps a stress response was triggered, which (my pet theory) may also trigger a surge of whatever viruses, bacteria, or whatever as my whole body and brain quickly begin to feel dangerously sick once again.

So my guess is, it's a damaged nervous system and its damaged stress response, and multiplication of toxins due to the inappropriate stress response.

 

I also think that perhaps a stress response was triggered, which (my pet theory) may also trigger a surge of whatever viruses, bacteria, or whatever as my whole body and brain quickly begin to feel dangerously sick once again.

So my guess is, it's a damaged nervous system and its damaged stress response, and multiplication of toxins due to the inappropriate stress response.

I have believed it for years too. Like I can almost feel the viruses, retroviruses, bacteria, etc taking over when I am weakened from stress. From getting poor or not enough sleep too.

 

I'm good with new positive events now but still get overwhelmed easily when faced with anything negative. Recognizing
and treating my OI and low blood sugar symptoms has helped here.

It took me a couple of years at least after starting my healing journey to welcome new experiences. I thought i was better with negative stress but recent events proved otherwise.

Fwiw, the books at the library woulda nailed me. Paper dust mites are my worst allergies.

tc ... x

 

Those of us who frequent the gf boards have been talking about these kind of improvements for several years now.
I remember many of us could see colors more clearly too. : )

Many of us had to eliminate all possible cross contamination and chose the paleo diet. And most had other intolerances.

Unfortunately, many of us are still struggling with health problems, just not at the level we were.

I hope you see an improvement in this area. Maybe ? It's a matter of exposing yourself to new situations more often.
A kinda of brain retraining.

tc .. x

 

I have believed it for years too. Like I can almost feel the viruses, retroviruses, bacteria, etc taking over when I am weakened from stress. From getting poor or not enough sleep too.

Yes. Me too. And I can feel my brain deteriorate as well. I was sitting in the dentist's waiting room with my son Jesse who also has CFS. He had an appointment, I didn't so fear of the dentist was not a factor for me that day.

We sat quietly waiting, conversation would be too much of a drain on either of us. But I did say at one point, "The balloon in my head just went flat on one side. I can feel it." Most people wouldn't have had any idea what that was supposed to mean. But Jesse did. He said, "Mine too."

Just from sitting in a waiting room. Our bodies started giving us a hard time just in trying to sit there and comprehend the world around us.

 

I'm good with new positive events now but still get overwhelmed easily when faced with anything negative. Recognizing
and treating my OI and low blood sugar symptoms has helped here.

It took me a couple of years at least after starting my healing journey to welcome new experiences. I thought i was better with negative stress but recent events proved otherwise.

Fwiw, the books at the library woulda nailed me. Paper dust mites are my worst allergies.

tc ... x

Glad you mentioned positive stress. I am much better with this than I was but positive stress used to level me just as solidly as negative stuff. When I got my first paycheck I was bedridden and brain-dead for two days. Anything really good could set off a crash.

I don't seem to have a lot of sensitivities to stuff -- though touching some metals will make my teeth feel weird, in a matter of seconds and it will last long after I stop touching the metal. The laundry chemical aisle in the grocery store used to make me feel sick.

 

Those of us who frequent the gf boards have been talking about these kind of improvements for several years now.
I remember many of us could see colors more clearly too. : )

Many of us had to eliminate all possible cross contamination and chose the paleo diet. And most had other intolerances.

Unfortunately, many of us are still struggling with health problems, just not at the level we were.

I hope you see an improvement in this area. Maybe ? It's a matter of exposing yourself to new situations more often.
A kinda of brain retraining.

tc .. x

Thanks xchocoloholic, I've been improving quite a bit with this. I was able to go to my daughter's rehearsal, wedding and reception, stop in at the home of someone I'd never been to before that day, all without problems.

Mind you I went to friend's new house for the first time recently and felt drunk and spacey for the first half hour so the thing is pretty unpredictable. Maybe that's better though, it used to be something I could count on in every situation.

I think it's a combination of getting used to being more places, but also being well enough for my body not to go into a state of confusion. I do know that doing a dry run if I'm going to need to go someplace and do something often helps -- the place is familiar by the second visit and I can concentrate on what's going on rather than trying to breathe and not fall down.

 

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'trying not to fall off the world' so eloquent, Jody. I remember that feeling, as well as lying so flat trying to melt into the mattress to take the weight of a body seemingly under 10G.
I am emerging from the shadowland, the elevator has reached another floor

onward and upward

 

'trying not to fall off the world' so eloquent, Jody. I remember that feeling, as well as lying so flat trying to melt into the mattress to take the weight of a body seemingly under 10G.
I am emerging from the shadowland, the elevator has reached another floor

onward and upward

Meandthecat,

I love when that happens. The elevator rising and dropping is an analogy that I have used myself over the years. Good luck!

 

That's sounds all too familiar Jody. My personal hell was (in moderate or heavy fatigue) supermarkets for some of the same reasons as the library bothered you. When in an Isle I found that the products seem to 'rush in at me' I could not organise or filter what I was seeing, meaning that I saw every product on the shelf at once but could not identify one.

I got around it by (slowly and painfully) learning to use online shopping at one (slightly expensive) supermarket and to build an order over 7-14 days. One I started shopping again I bought fewer items in larger multiples and stuck to local shops for fresh goods. The larger multiples meant I spent less time searching - I would buy two-weeks or a month of more compact items at one time.

I also found that if I explained the staff were very helpful and would point out the goods I needed, or fetch them, equally they would take me directly to the correct part of the supermarket (light to moderate fatigue).

Another thing I found useful was choosing supermarkets that had a decent cafe, that allowed me to break my shopping, rest and restart (pacing).

On the social front, I find at times I just can't cope with sensory input (from people or otherwise) at others I can cope with one person but not too. I think for me personally it's about amount of information coming in at one time (whether products on shelves, people moving, or conversation).

 

I'm good with new positive events now but still get overwhelmed easily when faced with anything negative. Recognizing
and treating my OI and low blood sugar symptoms has helped here.

It took me a couple of years at least after starting my healing journey to welcome new experiences. I thought i was better with negative stress but recent events proved otherwise.

Fwiw, the books at the library woulda nailed me. Paper dust mites are my worst allergies.

tc ... x

How do you treat your OI choco?

 

I'm afraid all I've learned to do is lay down often. Sitting helps too. Elevating my feet when sitting if possible. Nothing beats laying flat on my back for an hour tho. I do this regularly throughout the day. Standing is avoided.

Before learning I had POTS I had no idea why I felt so horrible all the time. POTS causes petite mals and sob for me.

Oh and I recently recognized that any drug or supplement that makes me drowsy makes my OI worse.

I've not had much luck with taking medications, I seem to get all the weird side effects, so I haven't tried any meds for this. The side effect warnings didn't appeal to me.

I just realized that I had POTS a couple of years ago but I needed to move from my last apt and that took everything I had. I plan on following up on this as soon as I get settled.

I have a few medical conditions, left bundle branch block, lung scarring and history of ataxia that may be contributing to my OI. I'll need to find a doctor, or doctors, who can unravel this.

If you don't have possible physical causes and you're looking for a possible reason or treatment, I'd look at infections, either bacterial or parasites also. You can either get tested and treat or treat assuming you have these. The info is on the web.

Wish I had better info. tc. x

 

That's sounds all too familiar Jody. My personal hell was (in moderate or heavy fatigue) supermarkets for some of the same reasons as the library bothered you. When in an Isle I found that the products seem to 'rush in at me' I could not organise or filter what I was seeing, meaning that I saw every product on the shelf at once but could not identify one.

I got around it by (slowly and painfully) learning to use online shopping at one (slightly expensive) supermarket and to build an order over 7-14 days. One I started shopping again I bought fewer items in larger multiples and stuck to local shops for fresh goods. The larger multiples meant I spent less time searching - I would buy two-weeks or a month of more compact items at one time.

I also found that if I explained the staff were very helpful and would point out the goods I needed, or fetch them, equally they would take me directly to the correct part of the supermarket (light to moderate fatigue).

Another thing I found useful was choosing supermarkets that had a decent cafe, that allowed me to break my shopping, rest and restart (pacing).

On the social front, I find at times I just can't cope with sensory input (from people or otherwise) at others I can cope with one person but not too. I think for me personally it's about amount of information coming in at one time (whether products on shelves, people moving, or conversation).

Leopardtail,

Sorry to hear that you have had these problems too. I used to have to lean on my shopping cart, in order to keep from falling down. Avoided the aisles with the heaviest chemical emanations.

Sounds like you found some helpful things to get you through some of the ordeals. Thanks for passing them on.

I also think my nervous system is just not equal to the demands placed on it in many situations.

 

Leopardtail,

Sorry to hear that you have had these problems too. I used to have to lean on my shopping cart, in order to keep from falling down. Avoided the aisles with the heaviest chemical emanations.

Sounds like you found some helpful things to get you through some of the ordeals. Thanks for passing them on.

I also think my nervous system is just not equal to the demands placed on it in many situations.

Funny you mention chemicals, I get faint going through anywhere with scents and can't stand do to more than one load of washing at once due to the scents in washing powders. They cause me to feel downright faint, my ME is well on the way to healing now but that remains a headache (as yet).

 

Funny you mention chemicals, I get faint going through anywhere with scents and can't stand do to more than one load of washing at once due to the scents in washing powders. They cause me to feel downright faint, my ME is well on the way to healing now but that remains a headache (as yet).

Yeah, chemicals, definitely a problem. I don't have nearly the extreme reactions in those aisles as I used to thank goodness. One of the things I did a few years ago (not as careful about it as I was back then) was get rid of as many chemicals in my house as I could. Included the gel I used for my hair, nail polish, lipstick -- replaced it with Burt's Bees which have less of that stuff. Replaced laundry detergent with, I think, baking soda, borax and ... something else, I forget now ... Trying to reduce the toxin load on my liver, immune system, etc. I think over a period of time it made a difference.