I’m typing this post up today because I’m finally going there, I’m finally accepting that I need a wheelchair in the home because the severe weakness and paralysis-like episodes are getting more and more frequent and I don’t know why. These paralysis-like episodes use to only occur with severe irritable bowel attacks, (3-5-) times a year, but now they are occurring about once a weak where my legs are useless, and several times a week where my legs are very weak, but somewhat useful.

UPDATE (12-09-16): Paralysis-like episodes (aka Fibro-Lockdown) has successfully been treated by the medication Mexiletine.

Paralysis-Like Symptoms

I feel it coming, but I never know if it’s just going to be weakness, or paralysis-like. So I am usually caught off guard. There are things that are sure to set these episodes off like severe pain, the kind where you scream and the whole block hears you. This can be from:

• Severe IBS attacks
• Injury due to being highly prone to accidental injury and with a heightened pain response. Once, it was a little as stepping on a tack the managed its way on to the floor. That’s all it takes.
• Being keep up late or woken up too early by neighbors or other outside sources. Albeit not common, not getting enough sleep means my “battery” for the day is substantially lower, which results in a total crash later in the day.
• Over doing strength or cardio exercise can also lead to weakness.
• A little too much dairy (natural super laxatives for me under certain conditions), or a little too much hydrochlorothiazide flushing out to many vitamins and minerals.

In any case, whether it comes on quick with severe pain, or it comes on slowly due to not getting enough sleep or dietary reasons, or it comes on for no known reason at all, it’s paralysis-like – in that I can still feel my body, I just can’t move it.

Severe Paralysis-Like Episodes:

For about an hour or two I cannot move. I cannot wiggle my toes, open my eyes, adjust myself – I cannot move, and I cannot seem to sleep through it either. I just lay there with nothing to focus on but feelings of helplessness, sheer vulnerability, and panic (especially if I feel the need to use the bathroom). After an hour or two I can open my eyes, adjust my body, and I can muster up the coordination and strength to scroll through Facebook, but not read anything of substance.

I may listen to music with my eyes closed or open if I cannot focus enough on the computer. At this point I could muster up the strength to pull myself into a wheelchair with a headrest to hold me up, but with carpet in my home, I would be too weak to move it. So, a power wheelchair would be the only thing of use to me at this stage. Something to totally support my body and move me – for me. But instead, I am currently crawling on the very painful floor, often for several minutes just to get a few feet to the bathroom.

Later in the day, I get more strength back in the rest of my body, but my legs are still too weak to walk with. This is when I possibly could use a manual wheelchair, but considering the traction on carpet, it would be exhausting enough to put me right back into another paralysis-like episode. So, the need arises, but will my doctor and insurance understand this need? I don’t want to need it, I don’t have anywhere to put it when not in use, and I can only imagine what I may do to the walls bumping into them as I try to get use to operating it.

Moderate Widespread Weakness:

In the evenings and after certain physical activity, I need an assistive device to get around the house and to let my dog outside to potty. My cane and rollator couldn’t keep me stable enough, so I opted for crutches. I only use one most of the time, due to lack of coordination and tremors at this stage. I have the crutch on my right side (dominate side), and put weight on my arm/hand and some weight on my under my arm. I have to be careful though, because too much pressure on one area is very painful. I then put my left hand on the top of the crutch for additional support.

These are the only crutches that I could find that I felt offered what I needed, but I needed to use additional padding. They are Pro Crutches made by Millennial Medical and are a little over $100. I highly recommend them, but not without additional padding. They have a pad for $30, but I found a foam sports kneepad with a strap for far less and it does the job for now.

This is an excerpt from my post of severe IBS attacks expressing how the severe paralysis-like episodes feel:

“You crawl on your hands and knees, or belly, to the bed or couch. It takes you a minute or two to get up there, and with all your might eventually you get situated, only to find moments later you are unable to move. You cannot lift a limb, you cannot shift your weight, and you are trapped yet again. Time passes as you continue to struggle to breathe due to the exhaustion, you want to cry, but you don’t have the energy and physical control to do it.”

“Then, eventually, you have to pee. The feelings of hopelessness and helplessness return. The pain of holding it grows, and grows, and becomes so severe that the sheer adrenaline of it all provides you with enough energy to make it to the bathroom. You do this every hour or so. You cannot open your eyes for most of the evening. Instead you just lay there paralyzed and lifeless. If you are in bed, you may fall asleep, if you are on the couch, you are stuck awake for hours with nothing to focus on but how miserable and helpless you feel and the memory of what just happened.”

How I Feel About Wheelchairs

I was in a wheelchair years ago – told I would never walk again, bathe myself again, get on and off the toilet by myself again – this was due to medication intolerance. So, once my chronic pain management doctor took me off  these meds (psych meds), I was back on a cane soon after because I was able to lose a lot of weight because I finally got back the mobility I had lost due to the meds.

I promised myself something then, something I refused to ever allow myself to do – get back in a wheelchair.

So, even though I have to be in a reclined position except 2 hours a day max (in about 15 minute intervals), and while I have been needing a wheelchair for when the occasional paralysis like episodes occur, I went without, because I associate a loss of independence with wheelchairs.

However, with these episodes growing evermore frequent, NOT getting a wheelchair may very well lead me to lose my independence altogether.

Losing some weight this year is definitely on the table too. I’ve already lost 10 pounds since my annual “boot camp” started (3 month program I do in my living room to lose weight and build muscle). I’m shooting for 25 pounds of fat loss overall. But, since how I feel now at around 150lbs I use to feel around 200lbs 13 years ago, I fear for my future self in 20-30 years.

The curse of the “Fibro” Diagnosis

A power wheelchair with a headrest and cushioned support would be best, a teleporter would be ideal, lol. But, with 21” doorways, it would be a tight fit, but doable. Also, considering how groggy I am when I’m that weak, it may be hard for me to maneuver, but far less difficult than a manual wheelchair.

However, the curse of having a condition few understand, that my insurance understands even less, and the curse of being diagnosed with “Fibromyalgia” – which is often scoffed at still today- leads me into a battle to get what I need. Fibromyalgia on average is mild in comparison to what I fight and survive every day. Many with fibromyalgia can still work, raise kids, have a spouse, and have a social life. These are all things I cannot not do. So, convincing Medicare and Medicaid that I genuinely need a power wheelchair may end up a highly stressful and fruitless endeavor.

If they won’t cover the expense, I cannot afford a power wheelchair on my own. So, my only option is to shoot for a manual wheelchair that offers everything I need now and in the future, and somehow find a way to make it work on the carpet. For all I know, Medicare and Medicaid may shoot that down too, but just in case, I did find the perfect manual wheelchair (form me at least) in the $300 range.

It reclines which is mandatory for me (I cannot sit upright without toppling over after a few minutes), it has padded leg rests and they elevate all the way up (which I need because of my knees – being bent to long hurts a lot, and they swell and lockup – which is part of why I have a 15 minute sitting limit in vehicles – and I need this feature if I’m going to take it to appointments where I normally have to sit for a long time).

It also has a headrest that can be up, or down. I’d have it up all the time now, but in 10-20 years or so when I may need it outside of the home, folding that down will be a great modification. Also, it has removable arms which will help me maneuver better and get on and off the toilet and couch. I will have to use my Tempur-Pedic seat casino with it, and might need to add some additional comfort to the back. BUT, if I can move it over the carpet, I can make it work altogether. It’s called the Medline Excel Reclining Wheelchair, and I’d probably go with the 16” seat.