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...
Thursday, February 6, 2014
Wednesday, January 8, 2014
Stubbornness: A much loved family trait
Stubbornness. It's a trait that has definitely carried through our family and one that I can thank for getting me to where I am now.
Yesterday I had my third session with my counsellor. For the bulk of the session she had me talking about my family background including my parents' childhoods. It was then that I realised I have a stubborn and determined gene running through my family.
EXHIBIT A: In recent months my grandpa has been quite sick (he is 90 so he's doing well). But each time he takes a turn and things are looking bad, a day or 2 later he's fine again. By "fine" I don't mean all better...but as good as he'll get I suppose. Essentially he's not ready to go. Whilst he's physically weakened, he still holds enough strength to push through and keep going.
EXHIBIT B: Since high school (sorry Mum if that's wrong), my mother has had chronic back pain after an accident in PE class. Over time the disks in her lower back have ground away leaving her in constant pain. I think(?) it stems back to her accident at school meaning she's spent the most part of her life in some sort of pain. Despite this pain she's run a household, worked in a job that requires a fair amount of lifting, played sport and travelled. Even when she's in obvious pain, she keeps going.
EXHIBIT C: Me.
I've never been one to take any notice of pain. When I was 8 I broke my elbow and simply said "my arm hurts". When I was about 10-11 my kneecap was broken. It wasn't until I'd spent a year dancing and running around on it that I even found out it was broken. A few years ago I broke my big toe whilst on stage. They always say that "the show must go on" so I gave it no thought and continued on with the show. There was no way a broken toe was going to stop me from performing!
I can now see that it's this stubborn determination that has gotten me though the past 10 years of my illness. Without it I could very well be bedridden right now. I refuse to let this illness take me. Yes, I do have limitations and can't live my life to the extent I'd have liked - but where I have the power, I take control.
I will use every last drop of my limited energy to see through each day and I hope that I can follow in the footsteps of my mum and grandpa and retain that stubborness that gets them through life.
Yesterday I had my third session with my counsellor. For the bulk of the session she had me talking about my family background including my parents' childhoods. It was then that I realised I have a stubborn and determined gene running through my family.
EXHIBIT A: In recent months my grandpa has been quite sick (he is 90 so he's doing well). But each time he takes a turn and things are looking bad, a day or 2 later he's fine again. By "fine" I don't mean all better...but as good as he'll get I suppose. Essentially he's not ready to go. Whilst he's physically weakened, he still holds enough strength to push through and keep going.
EXHIBIT B: Since high school (sorry Mum if that's wrong), my mother has had chronic back pain after an accident in PE class. Over time the disks in her lower back have ground away leaving her in constant pain. I think(?) it stems back to her accident at school meaning she's spent the most part of her life in some sort of pain. Despite this pain she's run a household, worked in a job that requires a fair amount of lifting, played sport and travelled. Even when she's in obvious pain, she keeps going.
EXHIBIT C: Me.
I've never been one to take any notice of pain. When I was 8 I broke my elbow and simply said "my arm hurts". When I was about 10-11 my kneecap was broken. It wasn't until I'd spent a year dancing and running around on it that I even found out it was broken. A few years ago I broke my big toe whilst on stage. They always say that "the show must go on" so I gave it no thought and continued on with the show. There was no way a broken toe was going to stop me from performing!
I can now see that it's this stubborn determination that has gotten me though the past 10 years of my illness. Without it I could very well be bedridden right now. I refuse to let this illness take me. Yes, I do have limitations and can't live my life to the extent I'd have liked - but where I have the power, I take control.
I will use every last drop of my limited energy to see through each day and I hope that I can follow in the footsteps of my mum and grandpa and retain that stubborness that gets them through life.
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