Pile of pillows eases pain

My husband makes my bed for me every morning.  He laughs when he looks at the pile of pillows I use at night to keep myself comfortable. I understand that they may look a little bit much but he hasn’t any idea what it’s like to live with CMT and, more importantly, to sleep with CMT.

During the day, I am on my scooter seated on a gel cushion with a pillow at my back. I am usually working so I don’t think about my pain very much. But at night, after the television is turned off and everything is dark and quiet there is nothing but my pain. I think that’s why I watch television so long at night. I am usually in bed by 11 but I don’t turn off the television until 12:30 as that seems to be my normal time to fall asleep. If that doesn’t work I take one inhale of medical marijuana and I am  asleep in about 10 minutes. However, the marijuana leaves me a bit drowsy the next morning and if I take it for too many nights in a row depression begins to set in so I have to have to be aware of how often I use it. It doesn’t really help the pain when I’m awake but it shuts my mind down so I can sleep at night and, for me, with sleep there is no pain.

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Pillows?  Pillows!  What would I do without them.  I’ve actually taken a picture of them so you can see the pile Ron makes every morning. There are seven. The first one is a neck roll. If you look inside the long brown pillowcase there is a little orange circle. I gave this to my mother to use when she was in long-term care. The orange circle is her laundry marker. She put the roll behind her neck anytime she was in bed. She may have had scoliosis as I do. Over the years I’ve developed a hump on the back of my neck likely from hunching over a computer for more than 45 years. There really isn’t anything I can do about the hump but a neck roll feels wonderful especially when sitting up in bed watching television.

The second one in the pile is a beanbag pillow that I can stick under my head to hold in higher, put under my neck if I needed and wad it up to hold my Kobo reader if I’m lying on my side reading in bed.

Number three as a memory foam contour pillow that really works well when I’m sleeping on my left side. Don’t ask me why but it is perfect.

Number four is an extra fat pillow I use as I fall asleep. I stick it into the corner of the wall giving it a good punch in the end and jam my shoulder up against the edge of the pillow. The height of the pillow holds my head in position so that my neck doesn’t hurt and I usually fall asleep that way.

Numbers five and seven go to the left of me and hold up my duvet so that it doesn’t touch my skin. It also holds my Kobo horizontally if I’m reading online on my left side.

Number six goes under my knees.  Without it I feel as if my back is breaking.

I don’t know if they count as pillows but I also take two to cold packs to bed. They have been in the freezer all day and one of them goes under my right knee and the other one goes under my right hip while I’m lying on my right side watching TV and getting “settled” as my old friend Karen Roth would say and ready for sleep. Those cold packs hold the key to pain relief for me. I rely on them during the day when the pain gets really bad. I can take cold much easier than I can burn so those two cold packs really sets the stage for sleep.

I also use something called Doctor’s Pain Formula, a roll-on concoction of menthol and herbs, under my knees. It burns for a little while and then the pain seems to subside even more.

At the end of my bed leaning up against the metal support holding the mattress on is another large pillow propped up on its side with a heating pad attached to it horizontally. I can put my feet on or near it. The control is within easy reach. I can’t sleep if my feet are cold. It seems strange that I can lie there with cold packs right out of the freezer under one knee and my hip but when my feet are cold sleep does not come.

My bed his automatic so I put the head up to about 5 inches and do the same with the foot. That leaves me in a hammock shaped bed. I am covered with a simple duvet with a mohair blanket folded over my feet.

As I said, if I am lucky, I fall asleep during a television show.  If not, my PAX marijuana vaporizer is within easy reach and one inhale plus 10 minutes sends me off.

At 75, I feel I am fortunate that I can sleep and that I sleep without pain but If anybody asks why Ron and I never take a vacation I think I’ll show them this post and tell them they’ve got to be kidding!

How do you make yourself comfortable at night? And if you tell me that you just snuggle on your husband’s arm and drift off, I’ll not only be jealous as hell but I probably won’t believe you.

It’s definitely spring here in southern Ontario and the torrential rains have finally stopped. My dogwoods are coming out and the azalea is in bloom.


Till next time,




3 Responses

  1. Hi Linda! Great article. I forwarded it to my daughter Debra Walter who also has CMT but a lot more advance then mine. Marijuana is the only thing that eases her pain and also uses many pillows. Not as many as you. She will probably be wheelchair bound soon. Age 60 and needs both knees and hips done or replaced but they won’t do it because she weighs 240. She used to be 340 but under went Bariatric surgery. Surgeons said if she lost 100 lbs they would do the tummy tuck but then refused to do it. I thought she could relate. Her husband is her caretaker, but feels like he resents it because she cannot do more then she does. You are so blessed to have the husband you do. Mine does ok but if he had to do it full time he would probably be the same. Some men are meant to be caretakers and some are not able to. Take Care my friend. I care. Linda Helms

    Linda Helms lhelms9727@aol.com

    • Hi Linda and thanks so much for your comment. I’m wondering if your daughter could use a small scooter around the house? That’s what I use and I really am able to get around, I can reach the countertops, wash dishes, make my own breakfast and lunch and work on my computer. You might suggest to her that she try a scooter before she goes to a wheelchair because in my experience a wheelchair can be quite limiting. Because I have CMT 2A2 and dysfunctional mitochondria is part of it, I cannot lose weight easily or at all. I am gaining slowly and I really don’t like it but I live on about 1200 cal a day. I suppose I should most likely limit that to 1000 or 900. I don’t know what type of CMT your daughter has but if it effects mitochondria weight gain isn’t all her doing. I was told because my CMT affected my mitochondria, because I was getting older and because I couldn’t exercise, there was no way I was going to lose weight. That puts us in pretty rough place and I don’t really know how to get around it. If anyone has any ideas please let me know.

  2. My oldest daughter has CMT she is 42 now and has braces to help her walk but chooses not to wear them because she doesn’t like them so doesn’t wear them. I have disabilities of my own and would welcome braces if they would help. Yes both of us will be in a chair sooner or latter we know this. She is also on pills to help with pain and doesn’t always take them to help. I have no idea how to help her if she doesn’t help herself. Please help me.

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