I’m carrying some concern and anxiety around my upcoming appointment with my neurosurgeon. There are several possible outcomes of this appointment – he could grant the implant, he could deny me the implant or he could suggest repeating the same surgery I had in November 2021 which failed.
As I’ve discussed before, my neurologist has made it clear there is nothing more she can do for me. At all. If the neurosurgeon denies me the implant or if I get it and it doesn’t help me then I am up shit creek. Unless the neurosurgeon suggests a different surgical approach then that still leaves me with the implant as a back up, but it would be wrong of me to not consider what I might need to do if any of these eventualities happen. Lee suggested crowdfunding for several reasons – one to get funding to seek research into this condition, one to use it to help get my voice heard and use it to become the advocate that this condition needs, next would be to fund treatment. I need to really consider this, the energy and time required and how to go about crowdfunding. I’d need to know exactly what it would be for and have a full plan on what I wish to gain from this.
In terms of seeking funding for treatment for myself I’d need to know what treatments I intend to pursue. There is a clinic in London who does the implant surgery, at a premium cost, that I could look into if the surgeon says no to using NHS funds for this. I’ve learnt a lot from the support group I am in and there are some alternative medicine routes I could explore. Many in the group use cannabis to treat their pain, nearly all of whom live where its legal. The most successful strain of cannabis in use is not legal in the UK, but I’m also not sure this is my favoured option. The other options are micro-dosing – with either mushrooms or truffles. Again, these are mostly used by those based in Holland or other countries where this is a perfectly legal treatment option. There is a doctor in the NHS who is currently researching the use of micro-dosing psychedelics on chronic pain, however I don’t know how to go about getting a doctor to agree to this on the NHS for my condition.
I mean what would you, my readers, suggest I should do with any of these potential outcomes? Because believe me, you’re more informed than the professionals.
Do I advocate for this disease to further research and treatments? Do I seek crowdfunding to get the implant privately if its denied by the NHS? Do I seek funding to go and explore these alternative medicine options? Do I seek funding to research myself what does and does not work – such as nutrition (specific diets), alternative medicines, exercise, etc (all suggestions welcome)? Do I shout about this to the press in the hopes that someone, somewhere, will read about it and decide that they want to look into this disease further? Because I can’t believe that there isn’t a neurosurgeon or neurologist somewhere that wouldn’t see this as a challenge they want a go at solving. But there is also a part of me that says why should I expect others to fund my treatment and that’s real. I don’t know that I deserve to ask others to do that for me, to seek the help or pity of strangers to make me better again.
Lastly I think when I’ve reached the end, whatever that might look like, when my story with this disease reaches a solution I think I’d like to write a book. I thought about writing a book now, but my worry is that if I were to do that now it would look a lot like my blog – messy, dark and all over the place. But I feel like I need that closure, because this isn’t just a headache, perhaps to me it was when I had it under control, but now its a disease that’s disabled me, brought my entire life to a crashing halt, stolen my career and a meaningful existence, trashed my mental health and has forced me to go insolvent with my debts. I mean when it reaches its end I’m sure it’ll be a hell of a story to tell. A story which won’t all be bad because without the time and space this situation has given me I wouldn’t have been to really dig deep to my very core in therapy. When I get to start my life again it won’t be the same Chloe that took the Pfizer vaccine in June 2021, it’ll be someone completely different. Not just because trauma changes people, but because I’ve had the time and space to find who I truly am and what I truly want from and in my life. I now know my values and needs, and I will live my life with such intent that it really will be like a do-over. And that deserves some space on a page.