Nearly 11 years after my symptoms started and 1 year after a diagnosis, today I finally had my psychological and physiological assessment for the Austin Health Adult Chronic Fatigue Program.
It’s been quite a wait to get my assessment, but I finally got there. It basically consisted of 1.5hours of questioning. Most would think that to be a long time to spend talking about your health, but for me…it was nothing. I could have spent double that time going through the seemingly endless list of symptoms.
Whilst I have been through the list hundreds of times, talking to hundreds of doctors and specialists, today was the first time I felt understood. So many times I have either felt like I was talking to a brick wall or that I was overwhelming the person/people I was talking to. I don’t question the understanding of my friends or family, but there is only so much they can actually understand.
Today, I knew that the people at the assessment truly understood me.
Nearly everyone tells me that I am obviously ‘coping’ given the number of activities I do alongside work and attempting to co-run a household.
Today, despite the word ‘coping’ being used, I was talking to people who knew how tiring and difficult ‘coping’ actually is for me.
Yes, my life is filled to the brim with work, activities, study, friends and family. So of course it would appear that I’m coping because I’m in bed all day. I don’t blame people for thinking I’m healthy enough or coping based on that fact. But the truth is, I’m not coping as well as people may think. Each and every day I remain conscious of everything I do and the subsequent symptoms that go with each action.
For me, life feels like swimming against the tide during a storm. I’m pushing forward as hard as I can, but one slip and I risk getting washed further out from the shore. And by ‘slip’ it could be something as trivial as not getting the dishes done or only half a load of washing getting put on because of miscommunication on my behalf. Then, with each slip there comes a flood of tears, guilt, hopelessness and stronger symptoms.
So today, for the first time, I was surrounded by people who understood all of this and as a result I was able to get a step closer to figure it out myself.
Given that, I am hoping that once I start the program in May (hopefully) I’ll personally understand myself a lot more and in turn be able to explain it to others. So stay tuned for more of my ramblings…