So Today is 25th April, today is Sunday. The day I look forward to as my Partners sons are both here together. They Bring fun, happiness and life into our home. Today I am missing out, today the game I hate the most has come out to play and it is not giving up till it wins….yes that game is THE RUSSIAN ROULETTE OF THE F WORD, and it wants payback for losing its game with me on Friday when I had a good day and won over the F Word. SO Today I am losing and I am losing big time, if the stakes where any higher I would just bow out, but no matter what I am Warrior and I will never lose. Granted I may be knocked so low to the ground by fatigue and brain fog that are trying to help my brain cope with the onslaught of pain it is receiving in every place you could imagine in my body that I am ‘confined to my bed’. But what I now know after 3 years of this, is that tomorrow could be a better day. That there will always be that one moment that still takes your breath away, there will be hours, days, weeks, months, years of magical moments to come and yes I can still see that through this torture that is the F Word.
Now don’t get me wrong I have been beaten over and over and over again by this game, by the F Word. Days just like today, where every movement is causing excruciating mixtures of various types of very high levels of pain throughout every part of my body. Where my bed quilt feels like it is made of burning hot lead, and the only thing I want to eat is an ice lolly (will do a blog on changes in tastes and appetite etc another day).
My Daughter has just come home with some positive news and all I wanted to was hug her and show her how much I love her and how proud I am, but the F word decided no, because just the touch would cause me so much pain. You may have just stolen that special from me, but there are others coming, an eternity of more and I will win most of them, why because I am a warrior, I don’t get beat.
When I discovered the spoon Theory, my life changed for the better, it gave me the permission I think I needed to know that it is okay to take that time to heal, to not feel as guilty because come on we are human AFTER ALL, guilt is natural. Today when I cant move, or think clearly or articulate my words and my speech is etched in pain, I can feel less guilty about not using my usual amount of spoons, about the many tasks and chores, I have to do. It does not however much I would like it to, help me feel less guilty about locking myself away in my room, in a bed that still feels like I am laying on concrete and not spending precious time with those I love. All I can do is make up for it when I am able to, and that ladies and gentleman is the life of a fibro warrior, hell any chronic illness warrior.
HAPPY Sunday my warriors, I’m sending you all gentle hugs