I’ve just finished my therapy for the week with Lee and several things came up. I will probably have several journal entries to share once my fingers and my mind are finished as there as several things I want to write on to see what comes up.
First is that I am harming my self. I need to recognise this for what it is and be honest with myself about it. For many, when they read or hear that someone is harming themselves what they picture is likely to be cutting my wrists or legs, a very common form of self-harming. But there are many other ways this can manifest and for me this is picking. I have picked, scratched and chews the skin on my fingers to the point of bleeding and infection and have been left with very sore areas, with red raw skin and scabs. I also scratch and pick at my face, my scalp and the back of my shoulders, and my upper arms. I, through discussing this with Lee, is likely a result of frustration, anger and probably sadness.
Of course this confused me because as you’ve read I have many good things happening, not necessarily things i imagined or hoped would happen, but ultimately they are positive. Like my Debt Relief Order (DRO) for one – I’d never in a million years wish to have filed for this insolvency service to clear my debts, but unfortunately the condition of my health left me unable to continue handling my debts as I was when I had a steady income. It’s not the route I would have wanted to take, but ultimately, it has removed the burden of stress from my shoulders, a burden I do not have the capacity to bare. So it’s a good thing.
Yet here I am picking at myself, or snacking unnecessarily to try and distract from the picking. The reality is that while these good things are happening, I still should not be in this position. I often find myself wishing I had cancer, nothing fatal, maybe a stage 2 cancer. Because at least people have heard of cancer, at least there are many treatment options, at least there is funding for more treatment options to be researched. At least when someone finds out you have cancer you don’t then have to explain what it is to them or justify why it has brought your life to a standstill. 3 times this week alone I have had to explain my condition to medically trained professionals, I’ve had to explain in detail what has happened to my since the Pfizer vaccine to justify why I am on pregabalin and why they need to action my prescription request. I’ve had to explain why my mental health is suffering, and to the extent my suicidal thoughts go, in order to answer their question on why my antidepressant dose was increased despite the fact that it increases the high effect from the pregabalin. I’ve had to explain, again in fine detail, why a ‘headache’ means that I spend 80% of my time led in bed in a dark room, unable to work, walk Bella regularly and how some days its so bad I can’t do anything more than nothing. How the exhaustion from this constant pain and the impact not training has had on my mobility means that some days I can barely get from my bed to the toilet, or that I avoid going downstairs when I desperately need a drink. Instead, I lay there, dehydrated, busting for a wee, and leaving it until the last possibly minute to go.
I waste the majority of every phone call or appointment with a doctor running through all of this just to get the medication I so desperately rely on to bring my pain down to an 8/10. Hardly seems worth the hassle, right? Especially when you realise that I have to inform a medically trained professional on something they know nothing about, and then trust them to make the right decision on my ongoing care or medication. Knowing that the only knowledge they have is what I’ve jsut relayed to them.
This is a lot of my frustration – that I have such a rare condition, a condition that’s also very rarely seen this severe and debilitating. A condition that is severely under-researched, under-funded and unheard of by most. I started sharing my journals because I wanted to help others – and I know I have helped some. I’ve helped my loved ones understand me and my situation better, I’ve helped some with mental health struggles feel less alone, I’ve helped those with my condition who have shared some of my posts with their loved ones so that they can be better understood. But what I have failed to do is shed light on this disease, to make it seen and heard, to make it relevant and to find help and funding to find better treatment or to find the cause so that someone can find the cure. Yes, I have played Russian roulette with treatment options, but they’re treatment options that those responsible for my healthcare didn’t believe would help me in the first place. Yet, I felt forced into trying them, because unless I did the surgeon wouldn’t consider surgery. Imagine being told ‘we don’t use this to treat Hemicrania Continua because is very rarely works’, right before having 31 injections around your face, head and neck – starting with one right between the eyes.
So yes, I am grateful that me and my small time blog has helped some people, but its not enough. The power of social media is incredible and immense, it can be hugely damaging too, but it takes a lot of time, energy and funding to truly have your voice heard – especially when you’re sharing a blog from just one person who’s suffering. Its easier to gain traction and interest when you’re shouting about something that has impacted most people. But unless more people like me write what its truly like to have Hemicrania Continua, and the sufferings, challenges and allowances that come with such a condition, then all people think is ‘it’s just a headache’. And then they suggest you take more paracetamol. I’m grateful that those who surround me understand me and my condition so well that I don’t have to worry about any of these frustrations with them. But I don’t know that that is enough for me, because I want to achieve more from my suffering and I need somewhere to channel this frustration.