Right now I’m in the middle of a bit of a flare up, the pain has been really bad the last couple of days. Last night after I got back from taekwondo training it was god awful and it’s not much better today either. However I can honestly say (right now in the middle of a flare up) that I am still feeling better than I have in years.
I’ve spent the majority of the past 4 years on all sorts of medications. I got up to taking 18 pills a day at one point. Headache preventative medication trials after trials, nerve blocks, infusions, Botox, anti depressants after anti depressants and on top of that anti anxiety meds as well. Not a single one made any difference to my pain or my depression. I use to say I didn’t get any side effects from them (apart from the one that made me loose over half the hair on my head; which wasn’t a nice experience) but looking back that would be a lie. I was extremely tired (tired probably isn’t quite the right word for what I was but anyway) all the time verging on being a walking zombie pretty much for the entire last 4 years. I fell asleep in practically every lesson at school, and when I wasn’t in lessons I was sleeping/hiding in the nurses room.
I didn’t feel like myself anymore and I thought I would never get that back. I didn’t think it was possible to live in pain and be able to be okay. In November 2013 I went to see my neurologist up in London he told me we had run out of medications to try and that there was nothing more he could do other than wait for surgery to become available as that was my last option. I didn’t deal with it very well, I hardly ever cry but on the train home from seeing him I spent the entire hour and a half crying. What followed was more deep depression that I thought I would never get out of, and at the time wasn’t sure I wanted to. But running out of things to try was probably a good thing, the search for a effective treatment wasn’t doing me any good, and the medications certainly weren’t doing me any good. Coming off them was the best thing, I felt clearer, and now that the depression has lifted and I’m only on necessary medication for my POTS so that my heart rate and blood pressure function properly and I don’t have blackouts and seizures multiple times a day, I feel more myself than I have in years.
I’m typing this in the middle of a flare up, I’m in a lot of pain, I don’t take medication or painkillers for my pain even when it’s severe. Normal over the counter stuff doesn’t work, migraine abortives don’t work either, not allowed anything stronger otherwise I’m not a suitable candidate for surgery; if I even decide to get that done when it becomes available again. But you know what, I’m glad I’m not on medication it clouds your thoughts and if it doesn’t work it just makes you feel worse. I’m all for it if it helps you, don’t get me wrong I’m not against taking medication for pain, over the counter or stronger stuff like opiates. But it is possible to live in pain without medication, I certainly feel better for it, yeah there are times when my pain is so bad I would love to take something to take the edge off but if nothing works then what is the point. I can live like this, it is possible, I feel so much clearer like I can think properly again and I feel like myself again which I thought I would never get back. Not only because I’m not on medication anymore but also because I’m no longer depressed (wow I haven’t actually said I’m no longer depressed before, that’s a first!! Feels pretty good!) I’m okay.
You probably think I’m nuts, living in pain and being okay with it, you probably don’t see how it’s possible. It is and I am proof. Yeah it’s unfair you and I and so many other are in pain all the time. We got handed a rough go of it, but you are more than your pain, it doesn’t define you. I know and I believe that now. My pain no longer controls me, today I woke up and the pain was god awful, but I decided to get up, my mums best friend came round with her puppy to let her meet our dog, so I spent the morning with them and then I showered and went out with my mum and sister, the pain was still awful but I made a conscious effort not to let it control me, not to let it confine me to my bed like it has so many other days. When I got home I had a bit of a rest, and then did my physio exercises and did some of my taekwondo theory studying and cooked dinner. The pain was still awful but I pushed through it and I’m feeling better for it. It’s so hard to motivate yourself to do anything when the pain is bad, I feel it too. But you can either confine yourself to bed and let the misery flow in because of the pain or you can try to do something, just something small, pace yourself, not too much of any one thing, but just something, it can really make all the difference.
Call me crazy, I am in a flare up but I am okay and I can live in pain without medication, do many of the things I want to do, my pain doesn’t control me, and I am not my pain.