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Wearing the G-suit
While I am sure that each person's results with a g-suit will vary because of differences in illness, symptoms, level of disability, expectations, and fit, these are some of my experiences with wearing a g-suit.
Even after spending 7 years in bed, it still took a life decision to wear the g-suit every day. Since my time was quickly quadrupled to 8-10 hour days (low energy/sitting activity 8-10 hours per day or high energy/standing activity 2 hours per day, with most days somewhere in-between), it was not long before I did not want to take it off. I wear it all of the time except when sleeping and bathing.
At the start, I decided not to change any medications, in order to evaluate how the g-suit was helping. Possibly my doctor will decide to make changes later.
The first big change for me was realizing I needed to eat more. With all the extra hours in my day, I needed to add a third meal and a snack. With the g-suit, I was now able to stand up and prepare the food. (I consider cutting an apple to be cooking!)
For the first few days, my back was hurting. I fix that by pulling the back of the g-suit down when I change from sitting to standing. The g-suit should not be painful. I usually inflate the g-suit until it is tight, but it often needs adjusted with more or less air when I change position.
I have one story that is so striking. I was trying on my wardrobe (for the first time in 7 years!) and had to deflate the g-suit for a few minutes so I could change. While I was changing, I saw my feet turning red and purple. I hurried to finish and get the g-suit inflated again and in just a few seconds my feet turned back to white (normal color)! It was really neat to actually see the g-suit working.
I was surprised by how much courage it took to try things, like actually starting a project after dinner. I decided to choose several things I could not do before the g-suit, like sitting at a computer, doing something standing, or going out. They would have been a disaster before the g-suit and I wanted to try them now to see what would happen. Even though my first try did not always go as well as I would have liked, it was better than it had been without the g-suit and, over time, has continued to get better still. It was helpful to know that I would get another chance tomorrow - that is a new thought!
Something I noticed was that I was not only doing projects that I had been stuck on for months and years, but I was doing a quality job. Many of the projects I thought would only take 2 hours (which was beyond me before the g-suit) actually took 8 hours. I was able to stick with it and get them finished.
With the g-suit, I have been reminded again that when I feel good, it is so much easier to do more of the things I want to do. Those are the times that there is no pushing through, and there is no payback (symptoms and extra time in bed).
Wearing and improving with the g-suit has been both a passive and an active process for me (more active than if I had taken a medication). It is passive when I let the g-suit work and see what the difference is in symptoms and my abilities. It is active when I try to think of changes that I can make to rearrange my new life, support the changes, and keep myself from falling back to a smaller life. I will also try to push through mild symptoms sometimes to see if the outcome has changed. I have tried to be very aware of myself and help the process along, not by pushing too hard but by keeping my progress moving forward. I also celebrate the victories along the way!
When I started wearing the g-suit in public, I was very self-conscious about it. It felt like everybody was looking at me and I had no idea what they were thinking. It seemed hard to go from a hidden illness to an obvious illness. When I considered not wearing the g-suit out, it was a very easy decision. It was working and I needed it. I found out that it does not even cross most people's minds that I am using the g-suit for an illness. They are usually thinking it is for something very athletic like rock climbing or skiing. The funniest question that I have been asked is, "Are you with the rodeo?" People that I have talked to are very interested and excited for me.
My mom (who also has Chronic Fatigue Syndrome (CFS)/Orthostatic Intolerance (OI) and wears a g-suit) and I have talked at length about this transitional time. Because the initial improvement is so dramatic, we needed to be careful to resist the urge to run out and get our old lives back (like school or a job!). We want to carefully consider and compose a new life. We are using this time to continue building and see what opportunities will present themselves. The first thing we are doing is catching up on projects and slowly adding "living" things (like self-care and things around the house that need attention), remembering this time we have missed has not been a vacation!
I have been wearing a g-suit since August 2001 and I am continuing to improve. Many times the changes are something I have been unconscious of, but have noticed in retrospect. A sudden realization like "I have not needed to lie down all day!" is just thrilling.
At first, I was constantly evaluating how I was doing with the g-suit. Asking myself, is the g-suit working? Am I having any symptoms? How do I feel? It took a while for me to settle down and quit questioning myself. Now I have noticed that I can get "lost" in a project for a couple of hours without even thinking about how I feel (which must be good) or how the g-suit is doing (if it needs inflated or not). I consider that a sign of progress.
I have found Dr. David S. Bell's Daily Activity Ratio to be a good way to evaluate my progress. I look at what levels I can do now that I could not do before the g-suit. I look at what levels I can do more of now (in hours) than I could before. I also look at rest and sleeping levels that are lower than before the g-suit.
One new level for me is exercise. Before the g-suit, it was not even a possibility. Very shortly after wearing the g-suit, I felt good enough to take opportunities to exercise in ways I had enjoyed before I had gotten sick. Because of Orthostatic Intolerance (OI), I felt "almost well" while lying down and getting out of bed led to feeling awful. By treating Orthostatic Intolerance with a g-suit, I can be out of bed more and get some exercise. I usually exercise toward the end of my day, so I have a long time to rest and recover.
Recently, I have been thinking about taking a different approach to exercise, so that it is not just something that I enjoy but I also benefit from it. This article called "CFS and the Exercise Conundrum" (Link will open in new window.) by Lucinda Bateman M.D. has been a part of my change in thinking. She points out the importance of finding ways to exercise that work around Orthostatic Intolerance (OI) and avoid payback (symptoms and extra time in bed). (https://www.iacfsme.org/CFS-and-the-Exercise-Conundrum-Lucinda-Bateman-M)
I also believe that treating the Orthostatic Intolerance (OI) first is the only way to make exercise possible and beneficial for me.
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