I’ve been trying to write for the last few days but I just couldn’t find the first word to put down. But after therapy and talking through what I am feeling I now know the first word that I couldn’t find.
Desperate.
I am desperate. Desperate for a cure, desperate to be seen and heard, and desperate for help. Because I’m also desperate for my suffering to end. I was at the doctors for an unrelated matter and I was sitting in the empty waiting room, with its clinical decor and bright lighting, and I was picking the hell out of the skin on my fingers. Shaking, sweating. I noticed and held my hands together and next thing I know I was picking again. In the moment I just had this overwhelming feeling and this voice in my head screaming I need help, now.
In truth I’ve been struggling a lot more than even I was aware of. With suicidal feelings appearing more often than I’m comfortable with. I have therapy 3 times a week, and I’m taking mirtazipine. But my dose hasn’t change since I started it nearly 2 years ago. And despite the cocktail of drugs I have to take I absolutely hate taking more. I take the drugs I absolutely must to help me cope with my pain but anything additional I am really against. So anyway, on my way out of the doctors I arranged a call with a doctor to discuss my dose and whether all my medications are ok and safe together. See no one reviews my medications and my neurologist doesn’t check what else I’m taking on top of what she’s prescribed. My GP and other doctors generally refuse to deal with issues that arise due to my medications because they don’t understand my medication regime or know anything about my condition, but they also don’t try to understand and choose not to know. I am largely unseen and unheard. And the phone call with the doctor just reminded me of that.
The doctor called and said ‘how can I help?’ I informed him that I am having real issues controlling picking at skin around my hands and scalp, I’m having suicidal thoughts or feelings daily and while I’m in therapy 3 times a week I feel like I need more help to try and make it easier for me. I asked him if my medications were ok together and whether I should consider increasing the dose of my antidepressants. So to me what I said was a clear cry for help, right? All he said was my meds are often prescribed together and so not a problem and we’ll double the dose and see how I get on. ‘I’ll send those to the pharmacy, have a good day’. No ‘are you ok?’, ‘are you safe?’, ‘is therapy helping?’. Nothing to acknowledge that I’ve just told him I’m suicidal and in need of more help. Just another doctor leaving me unseen and unheard.
But that is my reality and I am struggling. I’m struggling to believe in any treatments, I had one good day and have had nothing but shite since. I know a part of finding a cure is to go through these medication trials but I feel so deeply that I’m just being sent aware to suffer for another 3 months. Always another 3 months. My neurologist wasn’t hopeful for my treatment to work, which of course means I’m not hopeful. I’ve also done plenty of research to know that there is little hope in it. But what there is is plenty of research into studies and feedback from others with this condition to say that the occipital nerve stimulator implant is the most hopeful option for me. And each time I’ve been sent to the neurosurgeon to discuss the implant and I’ve been sent away to try different options. Different options with slim chances and in turn prolonging my suffering.
I am not coping. I can put on a good attitude and hide it when I absolutely need to to protect my true self and state being seen, but I also want to be seen. It’s very conflicting and that conflict is constantly battling inside of me with every interaction I have. I don’t want to pretend I’m ok or say ‘it is what is is’. But it’s my autopilot. I find it so hard to ask for or accept help, and I find it very hard to say what I’m really feeling.
When you see someone you say ‘hey, how are you?’ It’s something that’s been ingrained in us as an acceptable greeting. But do we mean it? Or is it just an empty gesture? Something where you inwardly groan when someone says ‘actually not great’?. That’s how my mind views it. That’s not to says when someone responds to me saying they aren’t ok that I inwardly groan, because that couldn’t be further from the truth. But it’s what my mind tells me will happen if I tell the truth. Because how can someone respond to me discussing my suffering? It’s overwhelming for me to acknowledge it and support myself with love and compassion. We are taught to ask how someone is in greeting, but are we taught how to respond? To truly hear what someone is going through and form an appropriate reaction or response? I don’t recall ever being taught how to respond if someone says ‘not fucking great’. It’s not in the script we’re taught. I’m suffering and even I’m not sure how to respond to someone else suffering. I don’t even know what I want to hear back from others. If I don’t know what I need to hear how can someone else know?
I feel like I’ve gone down a rabbit hole. But I asked for help from the doctors and felt unseen. But I then had a very productive therapy session Friday afternoon. A session where I was able to talk and pause and talk as and when my thoughts made themselves known and I could then voice them as they appeared. It meant I was able to truly see the thoughts and feelings I have but haven’t been seeing. It meant I was seen and heard by my self and my therapist. It meant I could come out of therapy and talk to my mum. And then my friend came over and I could be honest with her too. My therapist told me the more I voice it, the more I expose it, the better it will be, the less scary it will be and the safer I will be. Because these thoughts and feelings are fear.
Fear of not finding a cure, fear of never having a meaningful existence again. Fear of my suffering having no end…unless I end it. Because I am desperate for my suffering to end.
That terrifies me. I feel my spirit has so much fight and life and energy left, but it’s trapped in this broken vessel. I don’t want to be trapped in a broken vessel anymore. But it would be an injustice to give up now. It could be a waste.
We did a inner child exercise during my therapy, and my inner child told me ‘don’t give up over what could turn out to be just a moment’. See if I find a cure within the next year and I live until 90 then 2 years out of 90 will be nothing but a small moment. Though my suffering has been going on for far longer than 2 years I view the real suffering starting the moment I got my Pfizer vaccine. So 2 years would be but a moment. 2.2% of my life.
So I guess this is my journal to myself to ask and accept help. To be open to receiving and seeking. To stand up and fight for myself. To demand that my suffering no longer be prolonged by these near hopeless drug trials. Someone called it dartboard medicine which sums it up perfectly. Well I am done with throwing darts to decide my fate. My current drug trial is supposed to be 3 months, but I will do one more jab and if that makes me worse again I will refuse to continue further. Because I cannot cope with anymore suffering. So I will write a letter and inform my healthcare providers of this decision, I will back it up with a letter from my therapist and I will demand to be seen and heard. I will promise to myself that I will fight to get through this suffering, I will fight for its end but an end that isn’t the finality of my existence. Rather the end that means I get to reshape my life how I wish to, with a clean slate and better health. Because prolonging my suffering while doing these drug trials is no longer a safe option for me given the mental toll it is taking.
I am not safe.
That’s such a terrifying realisation and even more terrifying to say aloud, or write. But I will see and nurture myself with more compassion now, because I’ve been giving myself a pretty hard time over something that isn’t my fault. This entire situation is so unfair. It’s unfair that I ever got this disease to start with, and it’s even more unfair that it’s suddenly brought my life tumbling down around me. This is not how I saw my future, and now I can’t see one at all. And that will be my motivation. To fight to see my future and all the possibilities that could and should be.