Coping with invisible illness in your 20’s

Good days and bad days are such a cliche but this is how life is when you are living with an invisible illness. Thankfully, the blood clots on the brain that I was diagnosed with last December shouldn’t be permanent and I should hopefully make a full recovery but being so unwell, even for a short time has made me really empathetic towards those who live with illness long term.

For the past two years my general health and wellbeing hasn’t been quite right. In early Autumn 2013, after months of feeling constantly tired and gaining a significant amount of weight quite suddenly I went for tests which showed my thyroid gland as verging on under active. To regulate my hormone levels my GP prescribed medication but after a month of taking it I started suffering from incredibly painful headaches which often caused nausea and sometimes lasted days which left me incapable of getting on with life so I had to stop taking the medication. After a few weeks the headaches and sickness stopped and a blood test showed that my hormone levels had returned to normal.

For a few months I felt quite normal until around Spring 2014 when I started to feel run down and low in energy. I also had regular headaches but managed them with over the counter medication. 2014 was a busy year and I was worried that my thyroid was on the blink again and that the doctors would prescribe me the medication that made me so ill before so I just tried my best to get on with things and gained energy by eating healthily, exercising and cutting down on alcohol which no longer agreed with me. In 2014 I lost a significant amount of weight, dropping from over 9 1/2 stone down to 8st. My exercise and healthy eating seemed to kick start it but even when I calmed down with the gym routine and started eating more junk food the weight continued to fall off. It was the first time I had ever had abs and although I lost all my womanly curves, being so slim became addictive so alarm bells didn’t go off for me at the time. I was just happy that I could finally wear crop tops and body con! In autumn last year I was at my slimmest and suffering from headaches so often that I had to have pain relief tablets in my bag at all times. Life and work was manic and pretty stressful but I was still managing to hit the gym at least once a week and go out for cocktails most weekends.

On November 30th 2014 I was rudely awoken at 6am by a sharp, stabbing pain in my head behind one eye. It was relentless and seemed to spread to other parts of my head over the next couple of days until my head was pounding. No medication provided any relief so the next day after calling in sick at work, I booked an emergency appointment at the doctors who gave me migraine medication. It didn’t work and the only tablets that provided some temporary relief were ones we had at home that contained codeine. I only took one dose as my headache came back with a vengeance after a few hours so the next day, which was 3rd December I went back to my GP. As I looked so unwell my boyfriend came into the surgery with me during my appointment which turned out to be one of the best decisions we could of made as whilst the doctor examined me I had a seizure, passed out and stopped breathing for a few seconds. Before that I’d never had a seizure but I can’t remember most of it, apart from trying to move my hands at the start of the episode and my body just freezing. I remember looking at my hands thinking ‘why won’t they move?’ but after that I don’t remember anything until the paramedics pricked my finger in the ambulance. Apparently when I came around I didn’t recognise my boyfriend or know where I was and was trying to force my way out of the room! I have no idea where I thought I was going.

To cut a long story short, I spent two nights in hospital and was diagnosed with blood clots in the exit of my brain and bleeding on other areas of the brain as a result of the blood having nowhere to go as the exit was blocked by the clots. I had another seizure in A&E but once I was put on medication the seizures where I convulsed and passed out stopped but i had a few partial ones for the next month. These are quite scary as you’re very aware of what’s going on and I’d get a pins and needles feeling which started in my wrist and travelled up my arm to one side of my face. They only lasted around 20 minutes but the first two were scary. After increasing my medication dosage these abated and the only physical side effects I was left with were headaches, (but thankfully much less painful than before) tiredness, some memory loss and a reduced ability to concentrate. Almost 10 months on I feel nearly back to normal but I still get tired easily along with occasional headaches and head pains. Some days I struggle to get out of bed and can be really grumpy all day. Today is a good day but yesterday morning was a grumpy one!

It was really hard at first not being able to go out over Christmas and enjoy the festivities and then missing friends’ birthday celebrations as they were in lively bars and I was scared that the lights would cause me to have a seizure. I gradually started going out again in late Spring, although I still tend to avoid overly busy bars and clubs and don’t go out every weekend anymore. Until I saw a neurologist in July I didn’t know if I was allowed to drink so I was teetotal for 7 months until I found out that I was allowed to have a couple of drinks but not get drunk. My first Pimms tasted so good!

I’m currently out of work but would like to start some part time or temping work soon. I used to work in Insurance and the company I worked for were very understanding and accommodating when I was ill but the stress and pressured nature made my headaches and tiredness worse so I left in July. I would like to do something that’s either more laid back like general office administration or something more creative like working on a magazine. It’s always been a dream to have a career in publishing or journalism but if that doesn’t happen I always have my blogs.