Towards the end of May, not long after all my classes had finished at university, I noticed a very odd rash of pinprick red spots all over my body, severe unexplained bruising, and I was also getting nosebleeds. The rash and the bruises freaked me out a bit so I phoned my GP surgery and got an appointment that day. They sent me to hospital, where they ran some tests and diagnosed me with an immune condition called immune thrombocytopenia (ITP), which is when the body decides to destroy its own platelets. I was told my platelet count was dangerously low and that they’d need to start me on steroids straight away. Apparently a normal platelet count is 150-400, less than 50 is considered unsafe for surgery, and at less than 5 they start to worry about brain haemorrhaging. My count was 3. The haematologist said if it wasn’t for the fact I live with others, I would’ve had to stay in the hospital at least overnight to be monitored. I think my parents had initially thought I was making big deal out of nothing, but this is one of the few instances in my life when I’ve actually been GLAD to have anxiety. If I’d not been so worried about it, I’d probably have done nothing and things could have been more serious, especially if I’d accidentally injured myself.
I’ve had four courses of steroids in total since then and my platelet count has steadily increased. It was at a normal level at my last two appointments so it seems I’ve responded well to treatment and it’s just a case of them monitoring me now. I’m glad I’m off the steroids as the side effects weren’t much fun. I felt exhausted all the time when I was on them and my appetite has never been so strong in my life as it was on steroids – not even when I was training for the Edinburgh half marathon! I have a hearty appetite most of the time but this was just ridiculous. I made myself stir fry one night while I was on the second course and I swear the portion I had would’ve been enough for three full-grown men! Needless to say, I gained a bit of weight while on the steroids – apparently that’s pretty much universal. Even though it’s only been a few pounds, and I’m still a healthy weight, I always freak out when I gain even a little bit of weight. I worry I will no longer be attractive to my boyfriend, that everyone will think I’m fat, and I begin to feel almost as if my worth as a person is non-existent simply because I’ve gained weight (thank you dad, and the people at high school who bullied me for being fat as a teenager!) I was mocked about my weight so often as a teenager that it’s a minor miracle I didn’t develop a full-blown eating disorder. I’ve just started very gently getting back into exercise and hope to lose the weight I gained over the next 2 or 3 months.
For the first week or two after I was first at the hospital, I was so exhausted that I could barely get out of bed. Even going to get myself some food or water seemed to require Herculean amounts of effort. Even by the third and fourth week, I found just having a shower so exhausting that I’d need a lie down afterwards. I have no idea how people with chronic immune conditions do it – they are some strong people. I remember the haematologist asking me if I’d been feeling really tired all the time after they found out I had ITP, but I’d been so exhausted anyway with studying ridiculous hours for my master’s that I hadn’t even noticed. They’ve done a whole battery of blood tests and haven’t found anything that could’ve caused my body to suddenly decide to try and kill me! I wouldn’t be surprised if the extent to which I’ve compromised my physical and mental health for this master’s has had a great deal to do with it. It’s certainly been the wake up call I’ve needed to take better care of myself and listen to my body. I also discovered while I was unwell that I seem to just naturally need slightly more sleep than most people. I always used to think that it was just normal for me to wake up feeling groggy and like I’d been hit by a bus no matter how much sleep I got, but I’ve since discovered that I actually feel well-rested on 9, or sometimes 8 and a half, hours of sleep per night. Given that I was regularly getting less than 6 hours (not healthy for ANYONE, I know) during various stages of my master’s, it’s no wonder I ended up feeling so exhausted and so burned out.
It’s been a bit of a rollercoaster ride of emotions at times, as pathetic at that might sound. I’d feel great whenever my platelet count went up and awful whenever I needed more treatment or when the extreme fatigue or joint pain (after coming off the steroids) was really getting to me and I felt like an old woman. I think the steroids may also have done weird things to my mental health, or perhaps it was simply being quite socially isolated while I was unwell (more on this later). Both my boyfriend and family were really caring while I was unwell, which I’m very grateful for.
I was supposed to be finishing up my master’s degree in mid-August but the extreme fatigue from the steroids and the condition itself made doing coursework extremely difficult, particularly for the first few weeks after first going to the hospital. I am ridiculously behind with it all and will now have to defer my graduation until next summer, finishing up all my coursework in December. I’ve been feeling pretty down at times that I will once again be graduating later than everyone else (it took me just over a year longer than most people to finish my undergraduate degree too). I feel useless and like a disappointment because of it. I’ve been seeing a counsellor at university for the past few weeks and she pointed out that this is unfair because my classmates haven’t had to deal with being unwell, having a loved one who is in the final stages of cancer, and pre-existing mental health conditions, all at once. Yet I still can’t help feeling that way at times. I suppose I’m proud in the sense that I’ve only needed one extension due to mental illness during my entire master’s course (back in late March/ April when I was going through an episode of depression), whereas I needed A LOT during my undergraduate course. That may just be because things have been better/ I’m better able to cope with it all now though.
On the bright side, having to defer my graduation means that I can spend more time with my grandma in her final days without also being incredibly stressed about missing deadlines, and I can also take on more seasonal ecology work over the summer (which I’ve already started and have been really enjoying) without worrying about it impacting on my studies. I probably won’t get another ecology role until spring, and will have to just get a retail job or something after finishing my course anyway, so it doesn’t make too much of a difference in that sense. From what I gather, getting your first permanent job in ecological consultancy is no mean feat, so I may have to just do seasonal work for the first couple of years out of uni anyway. It’s both scary and slightly discouraging that even after all my hard work at uni, and with work experience, there’s still no guarantee of permanent job at the end of it all. But even if I can’t get one, doing seasonal ecology work for half the year and a retail job for the other half wouldn’t be the end of the world.