Thursday, May 13, 2010

Buckle Me Up News

Just a quick post to let you know about a couple of cool things happening with Buckle Me Up, International Autoimnnue Arthritis Movement.

1) This month, to coincide with May being Arthritis Awareness month, Buckle Me Up have launched a new charity bracelette. These only cost $1.50 American, and 100% of the proceeds go to help Buckle Me Up.

To learn more about Buckle Me Up or to order one of the bracelettes, go to:

2) Tiffany Westrich, founder of the Buckle Me Up movement, has been nominated for a Robin Hood Lionheart award. This award would potentially pay for everything Buckle Me Up needs to move forward to Not For Profit status.

Voting closes on May 16th, so go to:

to learn more or to vote.


Little Miss Autoimmune

Monday, May 10, 2010


After years of avoiding it, I’ve finally started doing my physio exercises regularly. Before I knew I had arthritis I was very good at doing the physio programmes I was given (for injuries to my neck and hand) but something went wrong when it came to the arthritis programmes.

I had a bad experience with physio early on after my diagnosis. The exercises I was given took me over two hours to do each day because there were so many, and so many repetitions of each. I was given written descriptions and diagrams but no demonstration or explanation so I wasn’t sure I was doing them correctly.

My pain got worse each time I did them and lost range of movement. The physio-therapist was testing my strength each week and that went down dramatically. Eventually, I just stopped going to see her.

Since then, I’ve been given two new physio programmes by the hospital which I have ignored. Finally, I decided something had to change and started doing them.

Surprisingly, I’ve actually really enjoyed doing them. They only take about an hour all up and I can do them while watching TV. I feel like they’re helping both my joints and my fitness. Again, there were only written instructions and diagrams but they were much clearer than the last lot and there were warnings about stopping as soon as it becomes painful. In a couple of places, there were too many repetitions listed and things became too painful to continue. I had one day of not being able to turn my head after doing too many neck stretches but I cut the numbers down and things are now going well.

I was thinking about that first physio-therapist the other day. At first I was kind of annoyed about the whole thing. I had an argument in my head with her (which was interesting since I can’t remember her name or what she looked like.) Then I stopped and thought about my part in the whole thing.

At no point did she hold a gun to my head and say: “Do these exercises or I will shoot!” (imagine this said in a vague accent that comes not from any country but from daytime-soap-opera-land.)

I knew those exercises were doing damage but I kept doing them. I knew I didn’t know how to do them properly but I didn’t ask, and I knew there were too many repetitions but I didn’t adjust the numbers.

I was just as much, if not more to blame for the damage the exercises did to my joints. Often, I think that I have to defer to anyone in a medical profession simply because they are in the medical profession. I forget that they are still human and above all that they are not psychic. If something is wrong, I need to tell them, ask questions or talk through the problems with them. Otherwise they can’t do anything about it and neither can I.

Little Miss Autoimmune

Thursday, May 6, 2010

Random Acts of Kindness

OK, so I felt like a bit of a bitch after yesterday's post.

Moral of the story: don't post things on the internet when you're feeling angry. I still agree with what I said, I just wonder if I presented it in the best way.

I do understand where the guy was coming from, and while it hit a nerve with me, I appreciate that he was trying to help.

I decided to put myself in a more positive frame of mind by thinking about the random acts of kindness I have received recently from some very wonderful members of the public.

Without these, many of my days would have been a much bigger struggle than they ended up being.

* Many lovely people have given up their seats for me at bus stops and on buses. Sometimes they've even given up their seat when there have been others available, but theirs was just that little bit closer.

I don't think I can even explain how much I appreciate this. Being able to sit down for five minutes, or while on the bus makes such a difference to my day. In fact, it makes my day possible. Thank you so much.

* A man in the supermarket offered to help me with my shopping because he thought it might be a struggle for me to manage it. I'm not sure if he worked at the shop or not but, either way, it was was very thoughtful of him.

As it happened, I was only buying a packet of chippies, so I politely declined the offer.

Even so, it was a kind gesture and one I'm thankful for.

* A teenage boy picked up my shopping for me when my biodegradable bag biodegraded on the bus.

There was no way I would have been able to pick it up myself. He saw I was struggling and helped me out. I'm not really sure what I would have done without him. It may not seem like much, but believe me, it made a huge difference to me.

* The people in the blood test office always take my blood in the small room off the waiting room because it's closer. They were also really wonderful in cleaning me up and looking after me when my arm randomly decided to start bleeding out.

* When I left the blood test office that day, I collapsed in the foyer and many lovely strangers looked after me. One woman even offered to go buy me chocolate and another walked down the road with me back to my writing space.

I wonder if any of the "givers" of these random acts of kindness actually remember doing them. Possibly the people who found me on the floor in the foyer do but I bet the others forgot about it pretty quickly. The people who gave up their seats probably didn't even think about it again.

For me, these are things I won't forget because they made such a huge difference to my day. I can't repay them, but I can pay it forward and start the cycle of random kindness again. I know it's very unlikely that any of those people will read this but even so, I hope they know how big a difference they made.

Little Miss Autoimmune

Wednesday, May 5, 2010


I haven’t written in a while because I haven’t felt like I’ve had anything particularly interesting to say… that is until today.

I basically just want to have a rant, and this seemed like the best place to do it. If you’re looking for something uplifting, this probably isn’t it. Sorry.

While sitting at a bus stop this afternoon, I (very politely) tore strips off a stranger for the judgements he was making about me and my life. Note: I stress the ‘very politely’ part. I don’t really do conflict very well, and the only reason I said anything at all was because I was already in a rather crappy mood. Actually, I didn’t really tear strips off him either but I did tell him what I thought which goes against all my natural instincts.

Often completely strangers will come up to me and start talking. I’m told it’s because I have an open face and on the most part I don’t mind. What they have to say is usually interesting, if sometimes a little weird. It does bug me a little that even more people talk to me now I walk with a crutch. People use it as an opening to start talking, which is fine I guess, but I don’t like the judgements they make about my life because of it.

This afternoon a guy sat down next to me and, pointing to my stick, asked me if I was struggling today. I didn’t feel like going into an explanation so I just said it was permanent, that being the simplest answer. He shook his head and told me nothing was permanent. I just shrugged which appeared to be the wrong answer.
“No, don’t give up, nothing’s permanent.”
I shrugged again. “It’s not a bad thing.”
“I didn’t say it was a bad thing, I just said nothing’s permanent.” He shook his head. “You shouldn’t give up; you should always strive for something better. Never give up hope.”
At this point I got really annoyed. “Who says a life walking without a crutch is better than one walking with a crutch? I’m still doing everything I want to, so don’t make judgements about my life.” (Or something similar – can’t remember my exact words but this is approximately what I said.)

At that point he laughed and said he didn’t have an answer for that. Then, as I got on the bus he called me a cripple. I wasn’t expecting that and it made me feel rather rubbish so I started crying (fortunately I have really big sunglasses so no-one noticed.)

If I had been in a better mood, I probably wouldn’t have minded what he said. In his own way he was trying to help… well maybe up until the cripple part, but I got frustrated by the assumptions he was making.

In the past I’ve had a butcher tell me only problem was I didn’t have enough hope, an evangelical guy tell me God could heal me if only I had enough faith and a gym instructor berate me for the low calcium levels in my diet. All of those bothered me, mainly because they were all said within minutes of meeting me, before they could possible form a realistic opinion of my life or condition.

When I talk to other people with arthritis, it always comes up that what we want is understanding, not pity or “medical” advice. I’d also rather that people didn’t make assumptions about how I feel, or how I life my life. Yes, I’m in a lot of pain and yes, I would like that to go away, but that in no way means I have a sub-standard life or that I must wait for something better to come along before I can start living. THIS is my life. Please don’t diminish that.

Little Miss Autoimmune