Living with an Auto Immune Disease

Next week I turn 25, by some miracle I have made it quarter of a century on this planet. That being said, I don’t feel 25, I feel a whole lot older. This summer has been really hard on my body and my mind, the heat hasn’t made things easy and I’ve had the most up and down of days.

For anyone who doesn’t already know I suffer from something called psoriasis, an auto-immune disease that effects my skin; thankfully I only have it on my scalp (though recently I have found signs of it in my eyebrows, but that’s another panic in itself) and so it’s fairly easy to hide and my hair goes a long way in keeping me from scratching the hell out of it – not to say that it entirely stops me but it helps. No one quite knows what the cause of this illness is and as a result no one really knows how to make it go away, there are cocktails of medications you can take to manage it – the flaking, the itching, the pain – but these come with their own downsides and so I’d rather avoid them.

Along with psoriasis comes a few other little gems, which in my case includes psoriatic arthritis (PsA), which is worse than the skin issues by about 1,000%. We all know what arthritis is, that thing old people get which means their hands seize up, their knees don’t work and it generally hurts; but it’s not just for the oldies I promise you.

If I trace all of my symptoms back as far as I can mine started when I was about 14 – yes, at 14 I started getting arthritis. I remember sitting in the school nurse’s office on the day of our medicals and after being poked and prodded by the doctor I was sat in the uncomfortable chairs at the desk going through some of my medical history. The doctor flipped though and suddenly looked up at me with a very concerned glare.

“Do you ever get joint pain?” She asked, her Egyptian accent stern and not particularly comforting for a doctor. I looked at her, confused, I hadn’t ever thought about it…I was a kid, why would I have joint pain?

“Sometimes my knees hurt and I have really week ankles…” she nodded slowly “but I swim a lot…”

“You had scarlet fever a few years ago?”

“Yes” I answered, and laughed a little, it was a funny story. “The first doctor I went to thought the rash on my groin was an allergic reaction to strawberries which really upset me but after a second opinion we found out it was actually scarlet fever.” She didn’t seem amused.

“Having scarlet fever can leave you with joint pain, this is probably why your knees are sore, and you’ll probably feel it in your elbows too.” She closed my file, signed a piece of paper for my parents and handed it to me, “okay, tell the next student to come in.”

That was it. I walked out of the office, told the next in line to go in and I returned to Maths.

It wasn’t the scarlet fever that was making my joints hurt though, it was the start of PsA.

I used to swim when I was younger, and I don’t just mean a few laps of the pool here and there, I was a high competitive swimmer and I was good at it, I held records all over Dubai for my breaststroke and I basically lived in the pool, so I was bound to hurt. My stroke wasn’t the kindest on the joints and my coach wasn’t the most forgiving of pain or excuse, so I worked, and I worked hard, for years until I had enough, but I wasn’t prepared to give up my life to swim in the Olympics, I didn’t love it that much. So I stopped when I was about 15, I hung up my goggles and I move on.

But once I stopped swimming I still hurt, by the time I was 16 my hands had started to ache. I struggled with writing and holding a paintbrush for long periods of time – just in time for those lovely GCSE exam essays.

From there it just got progressively worse, it  was slow but it was there. I never really said anything, who would believe an 18 year old complaining their bones hurt, that just wasn’t a thing. So I lived in silent pain for many years.

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There in lies the problem with chronic disease, you can’t always see it. Sure my psoriasis you can see, it’s kind of hard to miss on a bad day (again misdiagnosed when I was younger as a reaction to my years in the pool) but who’s going to think that a little scaly skin would stop me getting out of bed in the morning. People don’t always believe you when you say you’re in pain, they think you’re just a little sore like they get after a heavy session at the gym but it’s more than that. When you have to have your other half brush your hair because you physically cannot move your arms to do it, or help you up out of the bath because your knees just don’t want to co-operate, then you know it’s bad. I’m 25 and this is my life.

A simple way to understand what living with an auto-immune disease is like is with the spoon theory, as explained by Christine Miserandino:

I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarised that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

Read the full story here: www.butyoudontlooksick.com

Without sounding too over dramatic that is what every day is like for anyone with an auto-immune disease. So imagine yourself having to think about every thing you do throughout the day, trying to ration your energy, it’s not easy is it.

So that’s what I’m dealing with.

Yes there are medications you can take to combat the pain and aches of PsA and psoriasis but they are things like Humria injections that are used to reduce swelling caused by various types of arthritis and the effects of various skin issues including psoriasis by blocking the protein in the body’s immune system called the tumor necrosis factor which causes joint swelling, it is injected into the thigh or abdomen once a week or once every other week – sometimes more – and never in the same place as the one before. The problem is that Humria comes with it’s own cocktail of side effects including ankle swelling, very easy bruising of the skin and a bunch of others. It’s a painful treatment and while it does seem to work for most people the side effects almost don’t seem worth it, it comes with it’s own pains. That’s only the start of it though, I am part of a few support groups on Facebook and some of the side effects people experience on various drugs are terrifying, from mouth sores and kidney stones to new rashes and open sores – is it really worth it when there is no cure?

While I have researched many types of natural pain and flare up management and I know exactly what I should be doing, eating, drinking, etc, the actual getting started is a lot harder when you have almost zero spoons left in your arsenal at the end of the day, I am getting there, I am trying to figure out ways, but it’s a long road – a very long road – and I have to make sure I am ready (and the heat and humidity of this summer hasn’t helped much at all!).

If you know anyone with an auto-immune disease don’t be too quick to brush off their complaints or comments as over exaggerations, if you haven’t been there you won’t be able to understand and I don’t think there is anyone who would wish it on anyone else in a million years. Just take a little time to try and sympathise with the illness you can’t see. Not everyone who is ill looks like they are.

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