DIY Research: knowing when to stop.
The Early Years
In the early years of my illness, my M.E was severe and I was housebound. I needed a stairlift to get up and down the stairs (on the occasions I had the strength to get out of bed), and an electric wheelchair on the rare occasions I could leave the house. My quality of life went down the toilet and I wanted to do everything I could to yank it back out. I wanted to find a treatment or better still – a cure. Problem being, there isn’t one. Or at least, not for M.E.
I used to spend so much energy I didn’t have researching every little thing, in the hopes I would find a solution to my suffering. Relentless google searches, keeping up to date on current biomedical research findings, looking up any consultants that might be able to help me, passively reading every conversation thread in various social media support groups about various vitamins and unofficial ‘treatments’ other people in my situation were trying – and then researching them to decide if I should be trying it too.
It was fucking exhausting.
My actions were inadvertently reinforcing how ill I was, and the energy I was spending on it exacerbated my symptoms further – which was negative – but not pointless. Because I learnt a lot. A lot about M.E, and my M.E research led me to learn a lot about POTS (the two conditions can commonly occur together, it pans out). I also learned a lot about the power of social media and how people – complete strangers – can be so kind and helpful when supporting others with a shared experience.
With respect to M.E, I had to accept the harsh truth: there is NO treatment for M.E. If there was, then the whole damn world would know about it. It would have made headline news. Researchers would know about it (I mean real ones – not little old me doing google searches out of utter disbelief that there really IS nothing out there). Doctors would know about it. And there wouldn’t be millions of M.E patients globally who are still missing from their own lives.
Nonetheless, my M.E research led me to discover I also have POTS – which IS treatable. I gave up looking for a treatment for M.E, and replaced it by researching a consultant near me with a special interest in POTS, and staying up to date on POTS treatments. The consultant diagnosed me, and after a year of trial and error, we finally found the right combination of meds to treat my POTS. And the med that finally made the difference was one that I’d asked to try, based on my own research. Successfully treating the POTS placed less strain on my body, which then made things easier on my M.E.
At this point in my research journey, I made the choice to stop. Stop looking for something that doesn’t exist yet (M.E treatment), and stop making myself feel more ill at a time when I could be improving. There will always be something left un-googled, and there will always be new ‘treatment’ suggestions that some find helpful, but others don’t. I made the choice to believe that I’d done my best; I’m proud of my efforts, and celebrate that I am doing way better now than I was – as a direct result of all that research. I still struggle with my health daily, but the severity is small-fry compared to what it once was.
And now, I choose to accept my health and situation as it currently it is.
Finally, I have time to focus on what my body needs from me – rather than what I want from it. Resting. Breathing. Calm. Being compassionate. Being understanding. Being patient. Being in the moment. Just … being. Now THAT feels positive.
… Bah, who am I kidding. I’m not a fucking buddha. I still push my body to its limits at times. Except now I do it for the moment, away from my computer screen – some extra playtime with my son, some extra time with my partner, extra time to write, or go out for lunch; to just savour things a little longer before I have no choice but to lie down. And THAT feels positive too.
Over to You
Have you been researching your illness relentlessly for years? How has this helped you? How has this not helped you? Have you, or do you think you will ever – stop?