I'm doing a happy dance!

I had an eye appointment today – the result: there’s no inflammation in my eyes, no sign of problems being caused by medications, and while my left eye is still quite dry, my right eye is fine. Even better, my vision has improved and my eye muscle control is back within the normal range. Yay! It was so nice to go to see a medical professional, and have them tell me things were good!

Things have been better lately, in general. My new medication combination kicked in about a month ago. To be honest, I’d kind of given up hope that this would work. I knew it would take a while for the new med to start working, but when it had got to three then four and five months on it, and I was still getting worse rather than better, I figured it just wasn’t going to happen. Around the six month mark, I started to notice some improvements.

For most of this year, things have been pretty shaky (no pun intended) in terms of my health. There were days, weeks sometimes, where the tremors were so bad I couldn’t get around the house unassisted, and even when my limbs weren’t actively shaking I still felt pretty unsteady on my feet. There was more than one occasion where I lay on the floor, unable to get up after falling, and many times where I got stuck on the couch because my legs had gone numb and I couldn’t stand. There have been many days where I couldn’t leave the house because my guts were too messed up, and many, many days where one nap just wasn’t enough. There’ve been days where my eyes have been too blurry to do anything useful, and days my speech has got so slurry and word-salady it’s hard for people to understand me.

Things are by no means perfect now. My bad days are still pretty bad – still plenty of shaky legs, messed-up guts, word-salad and nap-taking – but on the good days I feel far closer to normal than I have in months. And there are far more good days than there used to be too.

On Monday I did a yoga class. It wasn’t entirely a success – my shoulder has been hot and inflamed since, and a few of my other joints are complaining loudly, but I did the whole class! That’s a long way from not being able to get off the couch. As I walked home from the class – yes, I even walked to and from the class, which would be FAR more impressive if it wasn’t in the building next to mine – this song came on my ipod. I think that was the universe’s way of reminding me to reflect and be thankful for how far I’ve come. Thanks Universe!  

Thanks for reading

Little Miss Autoimmune

Can you push through?

I had one of those days today, where you relive and rehash arguments from years, and I mean literally YEARS ago. In this case, it wasn’t even really argument I was relieving, it was one of those “this person said something I really didn’t agree with, but I didn’t have an answer to coherently explain why I didn’t agree with them, so instead I said nothing and now five/six years later am still trying to come up with what I should have said” situations.

Basically this is what happened:

I was running a training about chronic pain, and part way through one of the attendees interrupted. He started talking about people who train in martial arts, and who push through the pain. If they can do it, why can those of us suffering from chronic pain, just “push through.” Aren’t we just being too soft on ourselves? Aren’t we just not trying hard enough?

I didn’t know what to say. I couldn’t think of a way to coherently explain the flaws in this argument, but fortunately as I struggled to come up with an answer, one of the other participants in the training (who also happened to be a good friend) came to my rescue and redirected the discussion.

Today, I finally figured out what I should have done.

Now, before I continue, I’d like you all to try something for me. Raise your arms above your head – right up so that they’re touching your ears, elbows straight. Now hold them there, while you keep reading.

This is an argument I’ve come across a few times. The idea that you can “push through” pain. Yes, in some situations this is true – martial arts or other sports training, getting a tattoo or piercing perhaps, getting yourself to safety after an accident, and I’m sure other situations that I can’t think of right now. The difference with all of these situations is that there is an end to them. In my younger, pre-sickness days I did play sports, and while I don’t have any tattoos I have had a few piercings done. Yes, you can hold it together even if it’s hurting when you’re training, but you can be damn sure that as the pain starts to get to you, you’ll be watching the clock waiting for it to be over. Not only have I had piercings myself, but I’ve watched other get theirs, and I’m fairly sure the phrase most often said by piercers is “almost done” indicating that people are holding on for the moment that it’s over.

How are your arms feeling? Have your shoulders dropped down a little? Are your elbows bending a little? If they are, get them back up there! I didn’t say you could drop them! Could you keep them up there for another five minutes? How about another hour? How about THE REST OF YOUR LIFE?!

Maybe you could keep them up there for an hour, but in that last five minutes you’d be watching the clock, and as soon as that hour was up you’d drop them with a big sigh of relief and satisfaction. Maybe you could keep them up there for a day, if you got to take breaks and stretch occasionally.

Unfortunately, you don’t get to take breaks from chronic pain. There’s no end point in sight either. People with chronic pain do “push through” everyday, but it’s a different type of pushing through. We have to push to get out of bed, feed ourselves, and all those other daily tasks that healthy able-bodied people can take for granted. As an able-bodied person, you can’t decide what is or isn’t possible for someone living with chronic illness. If someone tells you they can’t do something, there’s no point telling them they should push themselves, because most likely they already are.

If you haven’t already, you can drop your arms now. Feels good? Don’t take that feeling for granted.

Thanks for reading

Little Miss Autoimmune