It has been "one of those days for me" today! I was up and down and in and out of bed all day! I couldn't get comfortable sitting,lying,standing etc...boo hoo poor me! I hate these days and there isn't a damn thing I can do about them cause I have..fibromyalgia(FM) and myalgic enchephalomyelis(ME) or chronic fatigue(CFS) to some. Did you see me whisper that...
Sounds like another 12 step program ie, AA, OA, GA...stand up say it...I know you can do it...say it!!! "Hi my name is _________ and I am sick. I have Fibromyalgia and ME/CFS amongst other disorders!" Just like those diseases FM and CFS/ME are invisible illnesses that we live with day to day that no one can see but us. If you have the disease you can pick it out in others at a glance. Wonder why that is...do we look different to another person who has FM, CFS/ME? I don't know about you but I hurt all the time and narcotics don't do me any good most of the time. I test myself when I am unsure whether my pain is from one of the above or from my osteoarthritis...yeah I got that to...then I take a pain pill and if it works then I tell myself it is just cause I am getting old and nothing to worry about! I think that is what I sense in others I meet is the pain that is etched in their faces. The tired look that says they aren't sleeping well either!
I have been so depressed the past year and half that I had trouble just getting through the day most days without breaking down and crying on a daily basis. I had changed so much from the person I was 10 years ago that I didn't recognize myself on good days. I lacked any interest to do anything around the house, with friends, or family. I hurt most days going and doing something fun took too much energy and I just didn't have it to give. The tiredness that comes with ME/CFS is debilitating. I have never ever felt this tired in my life. Along with the tiredness comes a host of other issues that go with it.
What have I done that made a difference in my life? Well first off like in a 12 step program I learned I had to be truthful to myself and quit denying what was so obvious. I was sick. I don't look sick but I am! I learned to live within the limits that I have and not to push them cause it means days to recover sometimes. I used to stay so busy and active but now I have learned to schedule what I do and when so I don't get worn out cause I don't have any reserves to call on anymore. I am busy and active in my way now! I got over the pride thing too and I ask for help now when I can't do it myself. That took the longest cause I wouldn't ask and people aren't mind readers. I always have been a strong person and asking for help doesn't come easy. Being a burden and beholden to others doesn't set well with me.
I think if I could pass on any words of wisdom it would be just these..."one day at a time" Just take it one day at a time. I have good days and I have bad days and if it is bad today I know tomorrow might be better.
2 comments:
That is what I always say to other sufferers too, take one day (or hour) at a time. With M.E it can be difficult to know your limits as they change so easily don't they. Pacing and proper relaxation help. I try to follow the three day rule too...If I do something that is out of my ordinary day I make sure I don't do another such for at least three days after. Sorry you have been so depressed, our circumstance, as well as the illness makes us feel that way doesn't it. I hope each day you can find at least one moment of joy. Hugs lin
OMG it's like reading my story. I remember years ago when I got the CFS begging God to help me to see what I needed to learn from it...and those were exactly the lessons I learned...I can't do it all. I have to ask for help. I may not look sick but if I don't take care of myself I will because I am. I need to nap EVERY day and when I don't I pay a heavy price for the next few days. The only way I can live an even remotely productive life is by doing it that way and what is productive for me isn't considered nearly enough for someone my age or especially someone the age I was at when I firs got it (24). When I over-do it at all which some days I have no choice as I have 2 children I pay a heavy price for several days to come. I have learned to ignore the ones that judge me by what I don't do and listen to the ones that raise me up for what I can do and do do. I also suffer with dysthymic disorder which is chronic low level constant depression with bouts of major depression like you described. Like that commercial says...depression hurts. I am grateful for a loving God that gets me through as without faith I don't know if I would ever get out of bed at all.
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