ME/CFS & Fibromyalgia Doesn’t Stop for Life

As you can tell, I haven’t been posting as often as I used to and part of that is because with the seasonal changes, I’ve been flaring and just getting through the day is about all I can handle.  To be honest, the last thought on my mind lately has been getting on the computer to write anything.  As exhausted as I am tonight though, I needed to sit down and write what I am feeling because it is the only way I will feel better emotionally.  Last week was a really tough week for me.  I was having a really bad flare, probably the worst one I’ve had in a long time, and to top it all off, I worked two days in a row, and it was also the week of my son’s birthday party.  My work schedule was such that I only had to work Sunday and Monday so as  bad as I felt, I was comforted in the fact that I would have the rest of the week to catch up and by the end of the week when I needed to finish the details for the party I would be rested up. 

But as we all know, as much as we try to plan our days and schedule ourselves for rest, life happens, and no matter how hard we try, things don’t always work out the way we hope.  I ended up not getting hardly any rest all week, with the exception of one day, and by the end of my work shift today, I felt like I was going to pass out I was so exhausted.  Saturday was a long day since that was the official “party day” and we didn’t get home until after 11:30 p.m.  Then we had to put everything away and it was after midnight before I laid down.  I wasn’t able to sleep and I was awake until after 6 a.m. on Sunday morning.  I woke up at about 9:15 a.m. when I heard my son come out of his bedroom.  I didn’t fall back to sleep and I had to be at work by 4 p.m.  I had another rough night last night and I overslept this morning which made me late for work. 

Last week I had planned to not go to the gym due to the flare I was having because I was afraid of making myself worse and not being able to take care of my son’s birthday party.  I knew that with as bad as I was feeling, the last thing I needed was to add one more task to my list.  When I called to reschedule my training appointment at the gym, I made it for this Thursday.  The trainer said, “I hope you make it in at the beginning of the week.  That’s a long time between workouts.”  I told her, “I have a birthday party Saturday, I work Sunday and I work Monday.  I will probably need at least Tuesday to recover.  I’ll be in as soon as I am physically able to.”  I get so tired of always feeling like I have to justify why I can’t do what normal people can do.   A lot of people can go to work and go and work out – I can’t do that.  I have to do a little here and a little there.  It gets so frustrating.  I feel like I do a lot considering all of the problems I have but yet to other people, it’s still not enough.  It’s never enough no matter what I do. 

I try and work despite the fact of how sick I am, but it’s not full-time so I’m told it’s “not enough”.  I try to work out when I am able but because I physically can’t get my heart rate up to the level that is considered a cardio workout, it’s “not enough”.  I can only work out at the most twice a week so that’s “not enough” because it’s not what is considered the normal 3 – 5 times a week.  I try my hardest to do the best for my family but I always feel like I am falling short and it is “not enough” because I get too exhausted too quick. 

It feels like an impossible situation sometimes trying to fit in when I am so different from everyone around me.  I feel like a freak most of the time and so alone.

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  1. You’re never alone. There are plenty of us out here who understand and are always ready to listen (read) and send you good thoughts and cyberhugs!

  2. Wow, it sounds too me like Sandy, you are doing an awful lot! I too have had a major setback since the cool weather began. I can’t imagine going to the gym. I try to walk daily, or do a bit of yoga, or some light gardening.
    As I am self employed I am attempting to gift myself time off for 2 months. The universe has provided me with NO clients!!! I am not quite sure how I feel about this – in one way it is a gift since I am so exhausted and achey – just some energy to move through the day. But a little bored at the same time. I am realizing how very difficult it is TO JUST BE without the striving that I have to do more, to be more, to be OK. My parents are moving into a retirement village and really need help packing, after many talks with my supportive friends and Dr. I was able to say I truly can not help. It is almost a relief to be able to have the strength to say no, and listen to my own needs.

    It is now 1 year since I have been going to the Fibro center and I feel only a bit better – There seem to be so many variables to this illness

  3. My heart is with you. I know what you’re going through, as I am in largely the same boat. Exhausted all day, but not falling asleep until the early morning hours, sometimes as late as 7 am. One’s whole internal clock seems out of sync. Horrid.

    I have had some success improving my sleep quality with Cymbalta, a SNRI. The level of absolute exhaustion and aching upon up has definitely been reduced. Also, I am starting Amitriptyline, an old-style tricyclic antidepressant. It fell out of favour as an anti-depressant because of its side effects, one of the chief ones being sleepiness. My uncle (a dr and CFS sufferer) has found that taking 100 mg before bed has greatly improved his sleep quality, which has had a positive effect on all of his symptoms.

    I really hope that, somehow, you will find something that helps somewhat. Fibro and CFS are miserable conditions. I know, because I have them, and they are slowly but surely picking away at my life… I’ve lost my job, find it difficult to spend time with my family, and have hugely reduced abilities and function. Here’s hoping things improve for both of us! 🙂

  4. Hi, I’ve commented on balance and that will give you some background. I was a single mother and life was more than difficult. I’ve been blind twice, had migraines and clusters that lasted 3weeks at a time and were so bad I couldn’t function at all. Many times I couldn’t walk at all or only take a 1 inch step/shuffle at a time. No two doctors could agree on what was or wasn’t wrong with me, there was no help but hospital injected Demerol. Flexeril helps with sleep as does oxygen and ocean air. Antidepressants were a disaster. Lyrica helps, not enough but it helps. I got to the point I didn’t care if I was crazy I just wanted a diagnosis and of course ‘it’ fixed. Somehow knowing has made life easier and the internet helps. People and most doctors don’t have a clue what we go thru and most don’t care—this is what makes life with fibro the most difficult now. Not to mention the flares that one cannot determine from a real thing or Fibro, and here I don’t mean Fibro is not real but the new sympton like a heart problem etc. With those of you new to fibro try and learn and hold to the limits your body dictates and you won’t be so severely affected, most of us try to be NORMAL and being normal is when fibro dumps on us the most. Smile it will make you feel better.

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