One Hundred and One Small Problems

“How do you do up your bra when your joints are swollen?”

After I got over the shock of being asked this question out of the blue the other day (and stopped laughing) I admitted I don’t. When my elbow/hand/shoulder joints are too stiff or sore to reach behind my back, I skip the bra and just opt for clothing that makes that fact less obvious. This is just one of the many small problems I face living with autoimmune arthritis.

Often people focus on the big issues with autoimmune diseases – permanent disability, mortality rates, infertility, risk of infection. And don’t get me wrong, these are BIG problems, but there are hundreds of other small problems that I, and others like me, face every day. Most of them seem insignificant in comparison to the big stuff. Some of these problems are even kind of funny, and make good anecdotes if told right.

I once went to a dinner party, and had to keep my coat on until a good friend arrived because I hadn’t been able to do up the zip in the back of my dress.

I once had to get the sales assistant to take the tag out of a top I was trying on while I was still wearing it - not because I was so desperate to wear it home - but because once I’d put it on, my shoulder froze and I couldn’t get it off again.

And a couple of non-clothing related ones: 

I once splashed a whole cup of water into my own face in front of a group of people, because my arm and neck spasmed at just the wrong moment. No-one saw the spasm. Nervous laughter ensued.

My leg once gave out while I was standing on the bus, and I collapsed into the lap of a complete stranger. Fortunately he thought it was funny too.

But most of the daily problems are not so funny. 

Tonight I took ten minutes to break the seal on a jar of pasta sauce. When I finally got it open, the jolt hurt my wrist so badly I literally screamed from the sudden pain and started crying.

Yeah, not such a great anecdote. So now I’m sitting here with my wrist in a splint and typing this one handed, while I recover enough to use the pasta sauce to make my dinners for the rest of the week. These kinds of problems make even the simplest tasks a lot harder, and often problems involve asking myself a lot of questions before I do anything:

·         Can I carry this without dropping or breaking it? If I carry it for too long will my hand “lock” around it, so I can’t let go? Will my handbag be too heavy if I add tissues/water bottle/medication/eye drops etc. etc. etc.? If I don’t bring them and end up needing them, will I be able to manage, or will I have to come home early? 
·         Can I go to ---insert place name--- since my symptoms mean I can’t drive? If I go by bus, will I be able to get on and off again safely? When so-and-so says it’s within walking distance of the bus stop, is that my walking distance or a healthy person’s walking distance? If I walk/bus will that use up all my spoons, before I even get there?
·         Will I be able to dress myself without assistance if I buy this piece of clothing? Will people notice that I haven’t been able to wash/brush my hair today? Can I open my jaw enough to brush my teeth today? Can I brush my teeth anyway, since my mouth is filled with ulcers? If I don’t brush my teeth, is that tempting fate for infections? Should I just stay home?

Still not as significant as the big stuff, right? Well, if there were just a few of these problems, it wouldn’t be that big of a deal. But when there are hundreds of them every single day, it’s easy to grow weary of them. Even the funny problems, aren’t so funny when in the back of your mind there’s one more looming question:

Why can’t anything ever be simple?

Thanks for Reading,
Little Miss Autoimmune

I wrote this post as part of the lead up to the 2014 World Autoimmune Arthritis Day online conference (6am ET/USA May 19^th- 5am ET/USA May 21^st) the theme of which is “A Day in The Life of An Autoimmune Arthritis Patient.” You can learn more about WAAD14 or register at http://www.worldautoimmunearthritisday.org/! REGISTRATION IS REQUIRED for the online virtual conference.

Open letter to parents of sick kids (from a now grown-up sick kid)

Dear parents,

First and foremost, you are doing a great job. You may think no-one sees how hard you try to make things better, but your kids do and they love you for it more than you can know, even if they don’t say it.

The following are not criticisms by any means. They’re just some things that I remember from being a sick kid, that I wish I could go back in time to say to my parents. I’m not a child-psychologist or anything impressive like that, so if you don’t agree with what I say, that’s okay. It’s just my opinion really, and you don’t have to agree with it at all. 

1)      Your child doesn’t want you to feel guilty

Many parents of sick kids feel guilty. Some site genetics as the reason, or choices they made for their children when they were babies. Whatever the reason, your child won’t want you to feel guilty about it. In fact, if they knew how bad you felt, they would probably feel guilty that you feel guilty.

You cannot change genetics. We all have them, and if you trace them far back enough, we all have hidden illnesses in our family trees. This is out of your control, and therefore not something you need to feel bad about.

The choices you made for your child were done with the best intention. Whether you vaccinated or didn’t. Whether you picked them up when they cried, or let them settle themselves back down to sleep. Whether you breastfed them or not. There is no definite evidence as to what causes autoimmune arthritis diseases, and at times either choice will have been thought to be a possible reason. The time spent wondering if this or that caused it, is entirely speculation, and to quote Baz Luhrmann “about as effective as trying to solve an algebra equation by chewing bubble gum.”

Your child has probably not thought about any of these things. If they ask you why they are in pain, or why this happened to them, they are most likely not really looking for an answer. It’s quite likely that they are just communicating to you that it hurts, and that they don’t like the fact that they are sick. They know that you already know, but they still need to be able to tell you.

When they’re older, and question whether genetics or environmental factors the cause of their illness, they won’t do it with blame. They will see the good intention behind the choices you made, and love you for that – not ask you to feel guilty.     

2)      Worry and anger sound similar to kids

It’s absolutely natural to be worried, when you have a sick kid. It’s also perfectly normal to be angry some of the time. Sometimes these sound the same to kids, though. They won’t always be able to tell the difference between “your voice is rising, and you’re frowning because you are so worried on my behalf” and “your voice is rising, and you’re frowning because you are angry at me.”

If you notice that your child reacts as if you have told them off when you are worried, it may be that they are interpreting your worry as anger. Don’t feel bad about this. Every parent, whether they have a sick kid or not, will have this misunderstanding at some point.

If your child is old enough to understand, have a conversation about the fact that worry and anger can sound similar. Explain that you’re not angry at them. Your child may be able to tell you what they’d like you to do or say instead, or you can talk about ways for them to understand the difference between worry and anger. There may be something you can say or do to make it clear for them.

When you’re stressed out it’s hard to think about, let alone change, what your face and voice are doing, but having a conversation about it can help stop it being misinterpreted.

3)      Your child will probably still rebel

Unfortunately, having a sick kid doesn’t give you a free pass on rebellion. Your child will still have all those pesky hormones, and that need to assert their individuality, just like every other teenager.

They may do this in the average way – alcohol, boyfriends/girlfriends you don’t approve of, sneaking out. Or they may start to rebel in a way that is closer to their world of being ill. It may be that they want to be in charge of their meds, and the choices about those. They may reject any suggestion you make, just because you made it.

There’s no simple fix for this, just as there’s no simple fix for the average child or teenager rebelling.

Let them be responsible for their meds if it’s possible to do that. They will need to learn to handle this themselves, and make choices about them, at some point anyway. Keep an eye on it, but try not to intervene unless you notice something of big concern.

If they reject your suggestions of what will help, make the suggestion but don’t try to convince them of it. Even if they say no initially, if you’re not persisting they have nothing to fight you on. They can make the decision themselves, and come back to it. If you argue about it, it will be harder for them to change their mind (or admit that they’ve changed their mind) but if they are able to say no once, then come back to it later on, there is no shame in it for them.       

Mostly what it boils down to, is love them, and keep them safe. Parents of sick kids have the hardest job in the world, and when the kids are grown up, they will look back and understand and appreciate it all.

Yours Sincerely

A (now grown-up) sick kid 

Little Miss Autoimmune  

I wrote this as a resource for World Autoimmune Arthritis Day

IAAM has established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20^th, online and during all time zones, making it a 47-hour online event.  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help them and their supporters in managing their diseases. Thus far, WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day.  www.IAAMovement.org

Find the WAADwebsite here

Register for WAAD here

(Back to) Invisible Illness

I’ve talked before about the “but you don’t look sick” aspect of invisible illnesses, but I’m not sure I totally got it myself. When I feel awful, I tend to assume I look awful, even if that’s not what other people are telling me.

The other day my friend took this photo for me to use as my author pic, on my publishers website. When I saw it, I suddenly got what people meant. I don’t look sick. If I saw this person on the street, serious illness would not be the first thing that came to mind.

What you can’t see in this photo is that we had to delay taking it, because a week earlier my right eye had swollen completely shut. You can’t see that only a couple of days before, my face was covered in sores, some of which had turned into ulcers and my nose wouldn’t stop bleeding. You can’t see that this was one of the first times in months I’d been able to wear my hair out, because it had been falling out. You can’t see the crutch on the ground beside me or the gloves and coat I normally wear all the time to keep raynaud’s at bay. You can’t see that the bracelets around my wrist are actually not one, but two, medical alert bracelets, and you can’t see that I’m wearing fluffy bedsocks over my tights because my toes kept turning blue that morning.

I weighed up whether to post this. I like the way I look in this photo. I did not like my swollen-eyed scabby face look, so much so that the only person I let see me like that was my Dad. Of course I don’t want to look sick, but I do want people to understand that even though I don’t always look sick, I am.

World Autoimmune Arthritis Day’s video Invisible makes this point much better than I ever could. Check out the video here, or find World Autoimmune Arthritis Day on facebook here.

Thanks

Little Miss Autoimmune