My experience with doctors hasn’t been easy to say the least, I’ve seen so many over the course of the past nearly 5 years now, and most of them haven’t been that great, haven’t had a good bedside manner (That includes nurses as well: I once had a nurse in London say to me ‘You can’t be depressed and self harm, I bet you have a flat screen TV at home you have nothing to be depressed about’ which sent me into floods of tears and I don’t cry often but that really got to me), haven’t listened or seemingly haven’t wanted to help much. Doctors who I was seriously questioning if they had ever even gone to med school because they seemed so lacking in their ‘expertise’. For a while my faith in doctors was completely crushed and as I’ve written this series you have seen that I eventually found some ‘good’ doctors, and not only good at what they do but nice as well, so they are out there but often it can be so difficult to find them.
When my neurologist told me last November that there was nothing more he could do because we had exhausted all options I felt so utterly and completely lost and helpless and it sent me in to an even deeper pit of depression than I was already in and started hoarding medication again. But with a lot of therapy from a psychologist who specialised in treating those which chronic pain conditions, I learnt acceptance. I always thought that as long as I had NDPH and was in pain I would always be depressed, that I would never recover from depression because it was so closely linked to my pain. When actually it doesn’t have to be that way, in my opinion we have a choice, we can let the pain control and define us, we can let it hold us back from the things that we want to do or as hard as acceptance is (and believe me it’s not easy but I can assure you it is totally worth it.) we can accept our condition and try to move on from it even though it’s still there, we can try to live our lives as full and as happy as possible despite the pain.
For me acceptance was scary and totally unknown, I felt safe in my bubble of depression which consisted of me sitting in my room feeling miserable as hell, to go out into the real world was scary to rejoin society again and start living my life and moving on from the pain that had been holding me back for so long. When my neurologist told me there was nothing more he could do, I felt angry, angry with the world, angry with my condition and angry at him because he was the doctor and wasn’t he meant to fix me?! But really he did the best thing by being honest with me, he allowed me to be able to move on. Getting out of treatment for my NDPH has also been great for me, the medications were horrible, awful side effects all the time, I gained 2 stone in weight for the past two years, I’ve lost all the weight now and and now back to almost the weight I was before I got sick, I’m no longer completely exhausted all the time because the medications were making me so sleepy, my hair has also all grown back from when I lost over half of it due to Sodium Valproate. I look like my old self again and I pretty much feel like my old self again, which I never thought I would get back. Acceptance is a powerful thing and it’s changed my life for the better, if my neurologist hadn’t been honest with me then I don’t think I would have got here with still being in treatment, so for that I thank him, for that he is a great doctor.
I only got here because I had exhausted all options to treat my pain, I tried everything medical and alternative and nothing worked. I had a choice to make, to let the pain control me and have literally no life whatsoever and also no life that I wanted or to live despite the pain and choose acceptance. I obviously chose the latter but it took me almost 5 years to get here and it was only after I had exhausted all medical options. So if you are in treatment and you don’t think you are ready to accept your pain and accept that you will probably be in pain for the rest of your life then that’s fine, but I encourage you to have an open opinion towards acceptance, it changed my life and it has the potential to change yours too!