As you might be able to tell, this blog is mostly a stream-of-consciousness. I have an idea about what I want to talk about and I just type. I scan over it after I’ve finished, but mostly as a quick sense and grammar check. I also try to make sure that I’m writing in my own voice rather than in an artificial, formulaic style.
I haven’t re-read my posts, and I don’t plan to for a while. But thinking about the topics that I’ve covered and the bits that I can remember typing, I get the impression that it might come across as whingy, whiny, or moany. Obviously we Brits have raised the Generic Moan into an art form. Just ask any of us how the weather is!
But I started this blog to try to put across how living with AS feels. Hoping to help someone who has just been diagnosed, or to our friends, family, and supporters. Hopefully some of the people who’ve visited have found it useful or informative. But I don’t want people to think that it will definitely ruin your life. It only does that if you let it. I’m going to do a separate post on how it feels emotionally at some point, but I can tell you that it does.
Today I want to recognise a couple of things that I like about my AS. This is a happy post so I think we need a happy song:
Right, now on to the benefits:
Empathy. OK, so if anyone who works with me reads this I know that they’re going to be banging their head on the desk. But I’m not talking about call centre Empathy. I’m talking about actually getting a sense of what some of my friends have lived with for years. We’ve just passed International ME /CFS Awareness Day. I know a few people who suffer from this and the amount of respect I have for them is immense.
Yes, I feel fatigued sometimes. I’ve described it as the feeling you have when you have the Flu, or a bad infection. But the good thing about AS is that this isn’t all the time. You can have good days and bad days, and with the right treatments and keeping yourself moving you can function quite well. The amazingly strong and impressive ME soldiers however have this Every. Day.
Christine Miserandino wrote an amazing story about explaining this feeling to a friend. It’s called The Spoon Theory. And I highly recommend reading it, it’s an inspired analogy. It’s also excellent shorthand to explain that you’re feeling fatigued. (And I’ve started calling energy drinks etc… my “Plastic Spoons”.) But the thing is that I don’t need it every day just to function. I have some good days, quite a lot of them. So I can empathise with friends and loved ones who experience fatigue. I know that it’s not just “being a bit tired”.
Knowledge of my own limits. Sexism is alive and well, not just directed towards women, but to men as well. There’s an expectation that a man will be able to run further, faster, lift more. But every individual is different. In the past I have pushed myself too far, trying to reach higher, knowing that I was in pain but trying to push through it so that I could go out with friends etc…
But now I’m able to recognise when too much is too much. I’m able to see the difference between an ache that I can continue working with and a pain that I need to stop. I know when I’m tired because I’m doing too much as well as when my AS has decided it’s going to play silly buggers. And I’m prepared to say so, which leads me on to the next thing.
Confidence. I posted a couple of pictures of me the other day. I hate those pictures. I don’t like how my twisted body looks. But that’s not the good thing. The good thing that my posting those photos is this: I did it. I would never have done it in the past. And I definitely wouldn’t have taken the side shot. But I have a name for it. I know that it’s not just bad posture, or too much time on the computer. And so I can hold my head up low and say “Yes, this is me.”
Another side effect of this confidence is that I’m happy to make fun of myself (as you might be able to tell with my blog titles). So if you see me, don’t worry about mentioning it – I’m not embarrassed any more, I use it as a way to help raise awareness.
People. I have been very lucky in my life. I’ve met hundreds (possibly thousands) of amazing and wonderful people. People who support me, people who challenge me. And being diagnosed didn’t stop me from finding people, it added to the people that I’ve met (online at the moment) and showed me some fighters, some carers and also taught me so much about living with a chronic illness.
Respect for the NHS. I’m a Brit, we have an amazing health service that provides free healthcare to everyone. Being healthy and having a decent quality of life isn’t just for the rich. Of course, it has its downsides, but it’s fantastic. I recently calculated how much I would have to spend to receive the medication that gives me the ability to live comfortably, to work and to contribute. It would cost me over £1,000/month just for my regular medication. This is excluding any preventative medicine and other treatments. So yes, complain about the NHS if you want to – but I will defend it to the hilt. Thank you NHS!