Something I have struggled with for so long was honesty, Especially during hospital and doctors appointments. They kind of just expect you to open up immediately and expose every single gruesome detail of your illnesses, When you barely know them, If you even know them at all.
I’ve been looked at and spoken to appallingly at some of my appointments and I know I’m not the only one who’s been treated like this. In some cases this treatment is by professionals, who don’t even realise that they’re offending or upsetting you.
I use the defence mechanism of taking my partner Steven to every single appointment I attend, My CBT therapist says I use taking him as a coping strategy because he’s my safety blanket (Read about my CBT experiences here). Every appointment no matter how small he comes along, and he’s happy to do so. As I’ve said before he’s my rock, my support system and sometimes my voice during most appointments, As my confidence disappears into a pit at random times, and I just can’t seem to get the words out.
There’s been times when I’ve seen arrogant doctors and consultants who almost seem to enjoy bossing me around, telling me that their changing my medication without even looking at me. They read your notes on a computer, make assumptions about you after never meeting you before and decide they’re going to change the things, that sometimes seem like your only lifeline.
This is where Steven steps in, he has my back and makes sure that my health and well being is priority. When my confidence disappears, I do this thing. I fidget, I mumble, I forget to speak about things I wanted to mention or I forget to speak at all, I’m awkward and forget what doctors even say to me because I feel trapped inside my own pit, the same pit that swallows my confidence whole.
Steven watches this, he knows the signs and can see me withdrawing. We’re so connected like he can sense my emotions (If you’re interested in our relationship at all, you can read about it here). He came up with an idea to help me find my voice. Having a notebook, something so simple, yet so effective. I write within things I want to mention, including an new symptoms, the progress or degrees of any current symptoms, how my medication is working for me, any changes in flare ups including frequency, duration and energy levels. Most of the time hand my notebook over to my doctors or consultants. This notebook has been added to My Ultimate Flare Up Survival Kit too. Before important appointments I regularly have anxiety attacks which take up my energy before I even get to my appointment, If you don’t have them you can read about what happens when you have one here. When my anxiety plays up, this notebook is a must for me and makes sure that my health needs are always met.
Like many other chronic pain fighters, I suffer from forgetfulness which lots of us call brain fog or if like myself you have fibromyalgia, fibro fog. This notebook helps me to remember foggy flare ups, and how I was feeling at that times, As I have a tendency to disassociate myself from them slightly, Almost like it wasn’t me who had the flare up but someone I don’t recognise. My future self thanks my past self for starting this and keeping track of my health better, I’m so much more prepared during appointments and If you take any piece of advice from myself, I would suggest keeping a notebook nearby and tracking your health because you need to start to take control of a seemingly uncontrollable illness. My taking control your winning and clawing your life back, just like I am!