In 2008, a doctor prescribed me a medication that triggered Steven Johnson Syndrome and almost killed me. It came after years of trying to find a solution to my TMJ, and by that stage I had tried literally hundreds of other options: specialists, oral splints, acupuncture, injections, medications, etc.
Near death and a whole laundry list of new, debilitating symptoms from the SJS would be reason enough for most people to lose faith and stop trying to find an answer. To just accept how things were, because there was plenty of proof that trying new things made the situation worse.
After all, next time, it could finish me off.
However I never stopped trying to find a solution to my symptoms. If I heard about something new, I tried it. If I read about an obscure medical research experiment that had positive results, I tried it. If someone suggested prayer or meditation or crystals or yoga, I tried it. (Just FYI, most of that stuff is complete shite and you're probably an asshole if you suggest it to chronically ill people.)
I wasn't willing to knock anything until I had tested it. So I have tested a lot of whacked out crap. Some of it was surprisingly effective. Some of it was predictably stupid.
Sometimes I would get one problem under control only to find it was masking eight more. Sometimes I would do a complete re-assessment of treatment by stopping all my meds and going off my carefully controlled diet to check it was really helping. (Also, stopping all your meds is really dangerous. Do as I say, not as I do.) Sometimes a change would require everything (meds, food, exercise) to be completely re-balanced and it would take painstaking weeks of experimentation to get things moving forward again.
The important thing is, I never stopped looking for solutions. I never stopped trying new things. I never stopped researching.
At the end of last year, a friend who had similar symptoms to me, but a different condition, said he was 'feeling better'. Jealous and curious, I asked how. He told me about a old medication with a new, off label use. Within a week, I was badgering my doctors about it. Took me a month or so to get a script and another month to actually get my hands on the medication itself, which had to be made specially at a pharmacy that did special orders.
The results were profound. They only targeted one of many symptoms, but it was a big symptom. My brain fog and fatigue were almost cured within two weeks. If I miss a dose of the medication, I am helpless again. However most of the time, this medication leaves me at almost normal brain function.
I still have pain, I still can't eat anything, I still get migraines. There are plenty of other symptoms to contend with. However being able to think clearly makes working on those a lot easier. What would have taken me three days to puzzle over with brain fog now takes me about half an hour. My productivity and social life have exploded in joyous ways.
It would have been a lot easier to give up. To accept, at its worst, that my life wasn't going to get better. And there were plenty of days I did. When I couldn't bring myself to keep searching for an answer that just wasn't likely to be there. That doctors kept telling me didn't exist and probably never would in my lifetime.
However it was right there. They just didn't know and didn't give enough of a shit to look for it. You have to do that for yourself. No one is coming to save you. I know that's not fair. It is so unfair it hurts. However fair or not, its true.
If you are chronically ill (I use the term to be inclusive of all chronic conditions, be they mental, physical, addictive, etc) don't stop. Live by the following:
1. Do the things you know you should do.
Take your f-ing meds on time. Drink water. Eat healthy food. Stop smoking and drinking. Stop doing all the shit you know is bad for you. Prioritise your health over other shit. Cooking a healthy meal is more important than answering your emails.
2. Never stop looking for a solution.
It's probably out there. Even if your doctor says there is nothing left to try, they're full of shit. Research and don't be afraid to bring it with you to appointments. Some quack says he cured your condition by having his patient drink and eat nothing but camel milk for two months? You better start gooling camels (true story, did this, yes A2 milk makes a huge fucking difference, no I didn't believe it either until I tried it, no it didn't cure me, but it did expand my diet slightly).
3. Fall off the horse and get back on.
"THIS IS TOO FUCKING HARD AND I CAN'T FUCKING DO THIS!"
You get to yell that once a day, or save it up for a few weeks and have a 'this is too hard' weekend. Sometimes it's too fucking hard for a minute or two. After my father died, it was too fucking hard for a few weeks. The point is, 'it's too fucking hard' has to be a temporary thing. And that is best achieved by letting it happen, wallowing in it as deep as you can for a short period, then letting it go.
No one is keeping score. Giving up is a temporary state. Its best just to let it all out in a spectacular toddler tantrum and then pick yourself up and move on. Whatever you do don't say: 'oh well, I failed a little, so I may as well just accept defeat and eat three kilograms of these nuts I am allergic to'. Your full body hives will not love you in the morning.
Just remember, there could be a solution out there. A real, honest to god solution, that allows you to have your life back. But you have to keep fighting for it. I did and now I can go to the shops and meet friends for coffee and shit. And that is a goddamn miracle.