In the spirit of Disability Pride, I thought I’d make a nailart for my disease or like Mick Mars always says ‘my curse’. It’s called Anklyosing Spondylitis and it’s a form of reumatism that mainly terrorises the spine and pelvis. But to be honest, all kinds of tissue in and around joints and muscles can get inflamed at any time for no particular reason. From your iris, to your achilles heel, no (synovial) bursa, cartillage, tendons, ligaments, and other tissues are safe.
Ankylosing spondylitis (AS) is a type of autoimmune disease that mainly effects tissues in and around joints, but also can effect bowels and eyes.
Typical joints that hurt are the spine (it’s in the name), the pelvis, the SI joints, shoulders, wrists, knees. Very common is lower back pain and the spine being stiff in the morning after lieing still during the night and it may take up to 1,5 hours for that to fade, making things like puting on socks difficult.
For some, like me, it starts in the knees in a young age and then move upwards towards the spine. When I was 11 – 13, I had frequent inflamed knees after PE lessons. I went to the GP and got medication, it was gone. But as it got chronically, my GP stopped giving me meds and told me to stop faking it. Which was the time where it got so bad, I couldn’t get out of bed by myself, but apparently that was normal for 15 year olds. That was the time the Harry Potter books were very popular and reading about a world where you could fly on a broom. Yes please!
It started in my knees, but shifted to my hamstrings and to my hips and lower back. So ever since I was about 15, I’ve had so much pain at times that I couldn’t stand on my legs anymore. The floor and nightstands are a lot harder and more painful than you think.
There’s no cure, and it probably only gets worse. Maybe sometimes you can get it to be stable with meds like NSIADs, steroids, DMARDs and biologicals, physical therapy and exercise. But it’ll always go in waves. Unfortunatly I had a very bad wave in the time I was in collage.
I was still figuring out what I was like to be sick, because I got diagnosed when I was 18. With my lying GP in between it took the medical system 7 years to diagnose me. In my last year of high school I had about 7 months of sharp headaches and intense fatigue. Instead of 32 hours of lessons every week, I was able to be physically present for about 6 hours every week. I could come home after 2 hours, my mother would make me tea. I could fall asleep at the dinner table with the tea in my hands. I was that tired. And I still get that tired, I just got better at pushing through it. Not too hard, because then you’ll need to rest before you’ll be able to sleep. But in high school, I wasn’t 18 yet, so I had a childrens doctor and sitting in the waiting room in between all the infants was very weird.
Once I turned 18, I was refered to a rheumatologist and from there on out, I had my diagnosis within 6 months. I needed 2 referals to get to the specialist I have today and she’s such an amazing doctor that I’ll travel across the country to see her.
Now I feel very lucky there are meds like biologicals. Without them I woudn’t be able to work and to do many other things I love doing. It gave me a lot of freedom back. I have this weird relationship with my bed. I love sleeping, but I’d like to spend as little time in my bed as possible. Because that means I have a good day. I don’t like afternoon naps, because they make me feel like a grandma. Some days it’s inevitable. And if I look at all the things I did, I feel like it’s a small price to pay. But there’ll always be those days where I can only turn on the dishwasher and the washing mashine and that’s it. I need to have a nap in between each of those actions. I’m happy now that there’s such a thing as grocery delivery, because some days, doing groceries is like running a marathon.
The downside to those biologicals is that I’ll be more succeptible to colds and infections and such, because they lower my immune system. I’ve been so afraid to catch Covid and I’m over the moon that I’m fully vaccinated. I felt like going to Disneyland the morning I woke up to get my first jab.
But there’s still something weird about having to inject yourself every month. Well it differs between brands. I started out with Enbrel and that was a small syringe I could slowly inject into my belly. With Enbrel I didn’t have a fear of needles. Which was good, because I needed that injection every week. Now I have a different one that comes in an injection pen. And it still scares me, even after 7 years. I have to put the injection pen on my leg, then a small ring moves inward, so I can press the big button, which will jam the needle into my leg, inject all the fluid and retrackt. Besides a very scary sound, also is a little painful. The first 2 years I could sit on the couch for 2 hours with sweaty hands, not daring to push the button. Having to ask my boyfriend every time, which luckily was only once a month, to press the button for me.
I used to joke that I was an honourary member of the Ministry of Silly Walks. I named my walk ‘the penguin’, because putting your weight on an extremely painful hip joint kinda looks like the way penguins wiggle. Luckily I don’t walk like that often anymore. It still happens, but in high school it was really bad and got bullied for it.
These days I don’t know what is worse. The pain or the fatigue. I’ve gotten quite good at biting through the pain. Generally when you see me in pain, it’s bad and I don’t have the energy to hide it. The fatigue I can’t hide. I can only push through so much. There’s always this duality where I have to question if an activity is worth my energy. I have to plan my energy accordingly. If I want to go to the beach on saturday, I cannot do this today. If I want to go dance on sunday, I can’t do anything else that day. Something bad is when something takes up more energy than you anticipated and you’re running on tomorrow’s energy, because it takes more than 2 days to recover from. I cannot drink cafinated drinks, because it makes me go over my limits without realising. It makes the highs good, but the lows are way worse than without.
One of the worst things is planning out your energy, only for the weather to change and you’ll be in agony no matter what you do. Humid weather is the worst. Generally I can also feel when it’s about to freeze or snow, because it causes a very specific pain.
But yeah, not being able to walk got me into sitting hobbies like doing nailart. Some days I cannot because of the pain in my fingers. But I didn’t realise that I’ve been making nailart for 10 years now on my blog and only now is the first time I made a nailart for my curse.