I’m writing this from my hospital bed on my mobile phone (because hospitals here don’t have WiFi! Wtf!) with my 6th thrombotic episode and my 5th episode of pulmonary emboli. For this all happening is the space of 5 years and being only 24, it’s a pretty mean feat!
Up until I was 19 I was a fully functioning, relatively well person. I was never the fittest, but enjoyed going on long walks listening to my music. So when I sprained my foot (I had a mini blackout as I was getting off a bus), it was a pretty big blow. I was able to mobilise using a crutch as a walking stick and my foot was almost completely healed in about 2 weeks. Then my leg started hurting… It was swollen, purple, SOOOO painful and would dent with even slight pressure. I saw my doctor several times and he said that it was muscle strain, keep walking on it and take anti-inflammatories. This went on for about a month, I was getting increasingly ill, my leg was double the size of my other and I was barely able to walk a few feet without throwing up from pain. I decided I needed to go to hospital, I did so and had a scan that showed I had a DVT from my ankle to my groin that followed the full length of my leg. I was admitted and put on anticoagulant medications.
It was then discovered that I had Antiphospholipid Syndrome. APS is an autoimmune disorder that causes the blood to be ‘sticky’. This also means that it causes blood clots, but as it is a systemic disease, these clots are able to form anywhere in the body. We finally had an explanation as to why I ended up with this DVT and knew that I would need to be put on life long anticoagulant meds to prevent further events.
This is where it gets messy haha. For some reason, I don’t respond to these medications properly. It will appear I am and blood tests will show that the medication levels in my blood are therapeutic, but I still end up with blood clots. I have an absolutely wonderful haematologist and the respiratory doctor I get admitted under is great too, I’m just a complex case, conundrum, medical mystery (as I’m lovingly referred to by my doctors 😝).
Being chronically ill isn’t very fun, it’s taken a lot of adjusting to and I doubt I will ever be used to it as things keep changing. I’m unable to do many things that I used to, even when it comes to every day tasks like changing sheets. It’s also taken a massive toll on my mental health. But this hasn’t dulled my creative spark, nor will I let it!
I’ve learnt how to crochet via YouTube and successfully made a cardigan for my friends bubba as my first project. I managed to sew for the first time using a pattern and made pyjamas. My next sewing project is going to be a velvet dress. And I discovered Mr. Kate! Watching your videos and snaps has been inspiring, pants wetting hilarious and a bright light on days that have felt much too difficult.
The past few years have been unbelievably tough, but I’ve found a strength I never knew I possessed. So despite being a hot hospital mess at the moment, I’m already thinking about all the things I want to do when I get out. I don’t know if my body will let me do them all, but I’ll give it a good go!