MS & Sleep Issues

I have had several problems with sleep over the last 13 years since I was diagnosed with MS. It has been an ever-changing problem ranging from too much sleep to not sleeping at all.

Erratic sleep patterns

In the beginning, I had issues mostly at night. I had the feeling of creepy crawlers all over my body and could not ignore it enough to sleep. I would end up exhausted before the next day even started. I also experienced erratic sleep patterns that really wouldn't even be considered as a pattern. I have slept four hours at a time and stayed awake four hours in blocks like that for weeks.

Sleep apnea

My sleeping habits were all over the board, and I just tried my best not to break down mentally or physically. Sometimes I would get lucky and have a full night's sleep, but still find it hard to make it through the next day. I even tried pharmaceuticals to try and catch a good night's sleep and have energy the next day. I was also diagnosed with sleep apnea and thought maybe this will help fix my sleep issues now that this is being addressed.

Started using a CPAP machine

I started using a CPAP machine for my sleep apnea and hoped for the best. I didn't know that I was stopping breathing so many times at night and how bad it was. It took a while to get used to wearing a mask to breathe at night but I did. It helped when I was actually able to go to sleep. I felt more rested after I had slept but it didn't fix everything.

Slept most of 2018 away

I wrestled with sleep for years but nothing compared to 2018. I had been through a very traumatic event in December of 2017 that led to me sleeping most of 2018 away. I would go to sleep at around midnight and sleep until about 4pm the next day. I would stay awake a couple of hours and go right back to sleep. I would wake up a few hours later just to go to the bathroom and get a drink. I had PTSD. I was depressed, I was in pain and I slept. I just wanted everything to go away and I had given up. I slept so much but I still couldn't stay awake. I needed help.

Circadian rhythm explained

I finally made an appointment and my neurologist was shocked to see how much I was sleeping. I had told them how much that I was sleeping but when they read my sleep report from my CPAP machine I was given a serious talk and a plan was put in place. This was one of the hardest things that I've had to do because it all depended on me following through with the regiment that I was tasked with. I'm not new to the circadian rhythm explanation but in short just in case you're interested, here it is:

Circadian rhythms are physical, mental, and behavioral changes that follow a daily cycle. They respond primarily to light and darkness in an organism's environment. Sleeping at night and being awake during the day is an example of a light-related circadian rhythm. That's the short version and you can Google a ton of information and studies about our biological clock and how everything goes together in a twenty-four hour process.

Resetting my circadian rhythm

I had to reset my circadian rhythm before I could do anything else. I decided that I would set an alarm and drag myself out of bed at eight a.m. regardless of my sleep beforehand and how I felt. The first day was hell. I got out of bed and had my morning drink on my patio in the morning sun. I was prescribed Adderall to help stay awake for this process also so I took one. It did not give me energy or make me speed. It helped me stay awake and focused for much of the day; which consisted of sitting in a chair and watching television. Occasionally I would sit outside for a few minutes to get some sunlight and natural vitamin D. I also took vitamin D and B plus a multivitamin that first morning.

The first week was hell

As nighttime approached I was naturally getting sleepy. I hadn't done anything other than stay awake all day and it was a struggle for me just to do that but I did. That night I slept seven hours. That was my target number for hours per night to sleep. The second day I repeated the whole process in the exact same way. The first week was hell. It was not easy by any stretch of the imagination for me to do this and I took a one hour nap at noon on Saturday.

These baby steps were huge for me

The second week I wanted to accomplish something outside and my body wasn't ready for exercise so I figured any movement at this point was good. I stuck to my wake up time and morning routine of vitamins, Adderall, and morning sunshine. I was awake and focused with a clear mind for the first time in a year. I did small things at first like riding my riding lawnmower for short amounts of time. I have an acre of land so I only mowed sections at a time. I would come in and watch television or read for breaks. I would walk around the yard for fresh air and sunshine just bits and pieces at a time. These were baby steps but they were huge to me.

Relearning my MS limits

I did this for several weeks and slowly increased my daily activity. I tried to stick to seven hours of sleep in a twenty-four-hour cycle. If I didn't get a full seven hours of sleep at night I would allow myself a nap in the middle of the day. We all battle MS fatigue and that is tricky in itself alone. In the following months I would wake up automatically around seven a.m. and do my best to accomplish something each day. There were days that I had to rest and fatigue got the best of me. I understand that you can only do so much with MS and I was having to relearn my limits again by sometimes pushing too hard and crashing the next day.

Still have bad days

I still have bad days for no reason where the fatigue is overwhelming, and I have to sleep but for the most part I am on a good schedule again. I'm nowhere near where I would like to be but I'm not sleeping all day every day and I'm feeling better mentally as well.

MS tries to break my clock

Our bodies are machines and MS jacks with the wiring. We all know that. Do your own research on the sleep cycles and see if any of this can help you. I'll say it again. It was not easy to do and I still have those days but I am so much better than I was a year ago. I have plenty of other work to do on myself but my sleep is much better. It's not perfect by any means but MS is constantly trying to break my clock along with everything else.

Don't let sleep steal your life

This is just one battle with MS and other things like chronic fatigue and depression. We have to keep moving or that clock breaks. When it breaks it's not pretty and will be something that you have to fight to get back on track. Even with your circadian rhythm back on track you will probably have bad days occasionally and that's okay. Rest when you have to but don't let sleep steal your life like I did. Time waits for no one.

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