Spoon Dominoes

My shoes fell apart the other day, and by fall apart I mean completely fell apart, unfixable, unwearable. It’s not really surprising – I’ve been wearing them for (at a guess) 15 years now, and they’ve been threatening to fall apart for the last six months or so. Added to that, that’s pretty much the state of every shoe in my house, except for the ones I turned out to be allergic to but haven’t yet had the energy to do anything about getting rid of.

I haven’t gone shoe shopping, because it’s difficult to find shoes that are both comfortable on arthritic feet, and that I’m not allergic to, and I’ve taken on too many things at the moment, so just didn’t have the spoons to spare on anything else.

So at the weekend, after my shoes fell apart, I wore a pair that I’m mildly allergic to, and that are slightly too tight to be comfortable, to walk to work, and then to stand all day during my shift, and then to walk home again. My feet hurt all day, but my feet always hurt, so I didn’t think anything of it, until I got home and found my foot was so thoroughly covered in dried blood, I couldn’t get my sock off.

And while the wound on my foot was small, lupus makes me heal slowly, and what started out as a blister is now an ulcer. And then the immunocompromising part of my medications joined the party, and last night my toe became alarmingly hot, red and pus covered, to the point I started wondering if I would be able to balance if it got amputated.

And suddenly, what started out as a funny moment, when my shoe fell apart in my hand, had become a rather gross and painful problem. And I still haven’t bought new shoes, because now it’s too painful to walk, let alone try on footwear.

This will all be fine, I’m off to the doctor this afternoon, and I’m sure it will all be pretty simple to get under control, but it did make me think about the domino effect that often comes into play with chronic illnesses.

It’s often just slightly harder than normal to do a task, and you have slightly less energy to do it with, but the consequences of not doing it are slightly worse than they would be for a healthy person, and the consequences of those consequences are slightly more dramatic, and suddenly all those “slightlys” have built up into a much more serious problem than it ever would have been for someone able bodied.

When people think of chronic illness or disability, I think they mostly picture the big stuff – the not being able to get out of bed, or move around freely, but it’s often the everyday, little things that build up and make illness hard. The big stuff – the falls, the hospital admissions – you just go into survival mode and get through it. It’s the constant nature of the everyday difficulties that wear you down with their unrelenting nature, making everything just that tiny bit worse.

I don’t know what the solution to this is, but I do know that next time, I’ll find the goddamn spoons to buy some shoes.

Thanks for reading,

Little Miss Autoimmune

What not to say

This is a blog post I’ve been wanting to write for a while but I’ve kept delaying. I’m currently procrastinating doing a number of other things, so thought now might be a good time.

You may have seen some of the “what not to say” posts. These crop up from time to time on different sites: “10 things not to say to someone with RA,” “Things not to say to someone with IBS” etc.

 
There’s one thing I’d really like to tell people not to say. Well, actually two things, but they’re similar.

1) I have a high pain threshold

2) Well, I never get sick

Now before anyone gets offended, I don’t mean if you’re talking about yourself. It’s absolutely fine with me if, while you’re telling a story about your broken leg, or the time your liver exploded, or some other painful situation, you feel the need to concluded with: “but I coped fine, because I have a high pain threshold.” Sure. If your liver exploded then feel free to tell me about your high pain threshold – I have no problem with this. Except... I would have a little bit of trouble believing that you were still alive post liver-explosion, so I would probably have to conclude you were lying.

My issue, is when “I have a high pain threshold” is considered an appropriate response to “I have autoimmune arthritis” or “I have a chronic pain condition.” Especially when it is said with the air of this being an achievement. A high pain threshold is NOT something you have achieved any more than having a head is an achievement. It’s just something that is.

To be fair, it’s usually preceded by “Oh, well I’m lucky, I have a high pain threshold.” Even so, this is not an appropriate response at this time.To me, this comment is equivalent to if you met someone who was an amputee and said “Well, I’m lucky, I have two legs.” It is not relevant. It is not helpful and it’s insensitive.

My issue with the second comment is similar. If you are just for some reason bragging about your lack of sickness, that’s fine. Perhaps you are recounting the time you were exposed to Small Pox, Ebola and Measles all in one day, and yet still didn’t get sick? In this case, by all means tell me about how you’re lucky to never get sick. If I have just told you about how I had to take time off work because of______ illness, perhaps not the best time to tell me about your perfect health.

Again, with this one I object to it being touted as an achievement. If you eat well, exercise regularly, meditate and don’t smoke, drink or do drugs – then you may consider being healthy an achievement. Unfortunately, I most often hear this comment from smokers who I know have bad eating habits, and don’t exercise regularly. I’m sorry, but the minute those words come out of your mouth Schadenfreude takes over and I want you to get a cold* because you’re getting all high and mighty over being well when you’ve done nothing to deserve it.

*I only want you to get a cold though – nothing more serious because I’m not a horrible person, I promise.

The other thing I object to with “I never get sick” is it is often expressed as if it is a piece of advice. As in “Oh, you had to take time off work because you were sick? Well, you see what I do is I just don’t get sick – revolutionary, I know.” 

Again, you are lucky to not get sick. And by the very nature of luck, it is uncontrollable.

I don’t say any of these things to people who make these comments. In fact, I usually say nothing at all – just take a deep breath and wait until the subject is changed. I’m writing about them here though, because if you’re reading this, I hope you’ll stop and think before you respond either of these things.

 
People who have chronic pain don’t have a problem with it because they have low pain thresholds – they’re just in a tremendous amount of pain. Before I was diagnosed with Psoriatic Arthritis I was told by medical professionals that I have a high pain threshold – it doesn’t make a difference. I’m still in a sh**load of pain now.

People who have autoimmune disorders are often on immunosuppressant drugs. Their immune systems are squashed down, making them susceptible to every bug and germ out there. They have to work hard just to not get sick often.

 
I think sometimes people say these things, because they don’t know what to say. It’s hard to know what to say when someone is sick, particularly when they are always sick. My feeling is, if you don’t know what to say, think about what you want to convey to that person. Do you want them to feel heard? Do you want to let them know you are there for them? When you know that, I think the words will probably come and my guess is, they won’t mention pain thresholds.

Thanks for reading

Little Miss Autoimmune.