Sunday, February 12, 2012

I am so tired!! Did I just say that?

Wait a minute! I thought that was a given with this disorder...I thought since we were always tired that everyone should know that and let us go home and go to bed!...what? I am suppose to have a social life and interact...

I went out with my daughter yesterday to an event called An Affair of the Heart in Oklahoma City at the fair grounds. The Affair of the Heart was started in 1985 as a one building one day show to a 7 building 3 day show in Oklahoma City and they are now having it in Tulsa twice a year. The show used to be all about crafting and art stuff that was handmade and the products to create crafts/art but over the years has changed. I wanted to go this year cause I haven't been able to go the past few years and I felt good...what did I say? we decided to go. The show was horrible. Mostly made in China style junk home decor and clothing items. Nothing like what it was years ago. I did really well but unfortunately, over did it and I have been hurting a lot today and went out and over did again!

I just got home and it is 1:30 in the morning. I went to a Valentines Day crop at my local scrapbook store and had a blast. I slept in till 2pm cause I knew that it would be a long day and I should have turned down the invitation to go to IHOP after the crop but friends were going that I hadn't seen in a while and a cup of coffee sounded so good... Tomorrow will be payback time. I know if I go to bed now I won't sleep cause my legs and head hurt so I am waiting for my Ibuprofen and Lortab to kick in so I will be able to be half way comfortable.

Tomorrow? I am expected to be at a Valentines Party at 1pm tomorrow/today so I better get to bed so I can be up at a decent hour. I know better then to push myself like this but I tell myself I deserve a halfway normal life but...One day at a time. Who knows come Monday I will be okay and not have a bad day. I keep pushing myself and testing the limits when I know that most likely it will just be a repeat of the last time when I thought I was normal...

Normal? Not me! I never have been so why do I think I should be special now? More tomorrow!

Saturday, February 4, 2012

Interesting day!

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 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 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.