That, over there on the right >>>>> is me at 4pm on Friday. This week I worked two half-days and one full day, I slept most of Wednesday and both afternoons where I only worked the morning. There were more naps in between, and outside of work, driving kids and cooking meals, I’ve sadly achieved very little.
I’m a train wreck.
I feel like someone has heated my bone marrow to boiling point, everything burns from the inside, especially the joints from my knuckles to my toes and all in between. The fatigue is ridiculous to the point of sometimes not even being able to complete a sentence. I used to be called Jabba-jaws – this is not natural for me!
I’m battling an unknown disease. I know some things it’s not. Which is great – it definitely takes the pressure off knowing that while I’m possibly battling something chronic, I’m not looking at terminal. I have a wonderful Dr who I know is battling right beside me. At this stage I’m waiting to see a Rheumatologist at the hospital – it’s going to take two plus months to get an appointment.
In the meantime, there are two things I can control here.
Food and medication.
My Dr would like me to go on Prednisone (steroids) to keep me going until I can see the specialist. It’s a means to an end. I have reservations about this. My mum was on steroids long term and it wasn’t pretty. I also struggle with treating symptoms when we still don’t know the cause. I’m thinking on this one, I’m leaning towards toughing in out for a few more months medication free but we’ll see.
Food is a big card in my favour. I wrote a while ago that I was looking into the Paleo way. I did go fully Paleo for a while. I enjoy the food but when I’m so blimen exhausted and have a household of seven to run, it IS hard work. That said, when I don’t look after my diet, my pain goes up, my quality sleep goes down and the brain fog closes in.
I don’t think I’ll ever be fully Paleo, I need coffee (yes, need, don’t try and tell me otherwise please!) and enjoy my Friday evening vino with my husband too much. But mostly, I am heading back to eating clean, very clean, in an attempt to love on my body as much as possible.
Let’s see what happens.
I won’t stop fighting. I will always make the most of the good days and I have learnt to accept the sleep days for what they are – out of my control and completely necessary…not a reason to feel guilty. I am so blessed with a very understanding husband who is completely supportive and never makes me feel bad for the things I can’t do. I love him.
My life is still good. Great. I am blessed.