Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
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All the best
I have had different problems with sleep issues since I became ill in 1998. At the onset of my conditions I had hypersomnia. I couldn't get enough sleep. I slept like a person with mono......for days and days at a time.
Then I began experiencing insomnia and disrupted sleep, pain would either wake me up or keep me up.
I was referred to a sleep center for further diagnosis. Sometimes I would become fully awake. Other times awake just enough to go from a position that was painful to another position that would become painful. I was in effect waking & making quarter turns all night long. So the first sleep study diagnosis was Insomnia due to pain, they put me on a prescription sleep medication.
Then a few years later the exhaustion became all encompassing. I couldn't wake up with one, then two and finally three alarm clocks. I was still working then. It was a bad flare that seemed to have no end in sight. Once I was up, I was still so groggy and out of it....functioning, but not with any clarity or good energy. I was sent for another sleep study.
The results this time revealed that I now had sleep apnea. I was given a CPAP machine, different meds to help me sleep and meds to help me be more alert during the day.
Since last year, I have made major changes in how I live each day. I do not need the CPAP equipment anymore. Occasionally take the prescription sleep meds and/or the ones to keep me more alert during the day. Ending my career, giving up denial, getting honest about what I can and should be doing helped me a lot.....it's not perfect, but it is so much better.
Now I am able to use Melatonin at night and get some very good sleep. I had to make major changes in my life. A big step for me was when I stopped working in the Spring of 2010. I was so ill that I was in bed full-time until July. April, May, June and the beginning of July were all a long painful blur.
Slowly I began to rethink how I do everything. And I mean everything. No more denial, I would get to know my body exactly as it is. I threw out my personal rulebook and expectations list. I began to embrace a new way to live.
I would do one thing and see how that went. Say a load of laundry, if that went ok, I would give myself kudos for that one thing. I would rest and see if I could do more. Like put the dishes in the dishwasher. If I could again I would give myself big pats on the back. I stopped thinking things like today I'm going to clean the garage out or clean the whole house or run errands all day. I stopped. I stopped creating big to do lists at night, then waking up depressed because I couldn't. A good day was a couple of chores, some time online, taking a shower and nuking soup. I celebrated that as a huge success. If I had a pocket of energy I would make several meals at a time. The goal was to get fresh nutrition instead of energy stealing packaged stuff when ever I could. I kept simple quick stuff on hand for the tough days. I am very pro-personal high fives! A good program for self-care is a journey, it takes time, set small goals. From better doctors, to you name it, raise the bar on what you need and slowly keep at it. When you can't don't worry...it's no biggie. Take care of Y-O-U.
I looked for ways to save personal energy every way possible. From how often I shop, to what I put in my tank. If I had to mop the floor I did it in my rolling chair. When I couldn't I threw a wet towel on the worst of it and used my feet.....lol....I'm so not kidding! I got lighter tools to help me do things and did them all less. I found myself smiling again, then laughing and singing again.
I wanted to uplift my spirits so I added music, comedy....stories about people overcoming adversity. I prayed a great deal. I didn't worry about getting dressed in street clothes....I wore loose comfy stuff and chilled. I added tools......from giving myself permission to do less to adding things that made me safer, more comfortable and so on. I removed roadblocks.....everything from rugs to excess furniture, clutter and self-bullying. At the time I was falling a lot. I needed and got help to do this. I had to get over myself, pride and all that cluttered thinking. I got serious in a very laid back low key way about how to keep life as simple, uncluttered and easy as possible.
It sounds funny, because I was too ill to do anything else. It had a lot to do with letting go of grief,denial and expectations. I added acceptance, compassion and made room for change. It had a lot to do with thoughts and emotions.....I changed a lot of that and got very logical about how to live a best life with in the many conditions I have.
I still have periods of hypersomnia, insomnia but it is not as severe as it used to be. I don't miss the CPAP machine at all. I am pro-tools, if I need a tool I use it. If the melatonin isn't working after a couple of days, I take a prescription sleep med, I also check my levels of activity.....a lot of times I get carried away when I get a pocket of energy and put myself in a muddle. My life is very simple and quiet, I am at home and on my own most of the time.
I know this was a much bigger, longer answer than what you were looking for......lol.....I've been ill since 1998 and it has been a long journey to get where I am now. We have to make flexible our middle names and turn to others who have been down this road for support, advice and encouragement.