Exactly one year ago, on Thursday 29th September 2016, I was diagnosed with type one diabetes. This is my diagnosis story.
I think I first started showing symptoms around June 2016. Whilst on holiday in Barcelona, I really struggled to cope with the heat (around 32°C/96°F ) and felt exhausted after walking short distances. Looking back at photos, I can also see that I had started to lose weight.
I started a new job in August and know that I weighed 67kg when I started. As the weeks went by, I was losing a couple of kilograms every week, but put it down to working really long hours, being on my feet all day, and not having time to eat properly.
I went to Berlin on holiday in late August, and despite the obvious weight loss, I was also becoming increasingly thirsty. I would routinely drink a 2l bottle of water, immediately feel dehydrated, down another bottle, go to the loo, and repeat. I put it down to the heat, but it continued back in England, which was much cooler. At work, it became almost a joke that I would ask anyone going to the staff room to refill my water for me. I could easily drink 30l per day at this point, and naturally I would be spending a lot of time needing to pee!
It became apparent that I was losing an unhealthy amount of weight when my trousers started falling down at work. I had bought new clothes when I started the new job, but now the size ten clothes had become size eight, then size six. At the point when I couldn’t even fit into a size four, I knew I had to do something about it.
In the middle of September, my husband and I went away for a few days to celebrate our wedding anniversary. The weight loss was ridiculous and very apparent – you could see the individual bones in my spine. I would estimate that I spent more of the weekend away shaking and crying on our hotel bed than I did actually enjoying our anniversary. I felt so ill at that point that I finally decided to see my GP.
I made an appointment to see a GP the next week. I hadn’t done any research because that’s not something I’d do, but I wish I had now. I told her that I’d lost a lot of weight, I felt desperately thirsty to the point of dehydration, I was peeing all the time, and I was feeling absolutely exhausted. Instead of diagnosing type one there and then like she should have, she told me off for losing so much weight as it could be the sign of “something serious” and told me to come back for blood tests later that week.
I know I called up for a GP appointment on September 15th, and I wasn’t diagnosed until September 29th, which says something about the urgency with which my symptoms were dealt with.
I saw a nurse at my GP’s surgery for some blood tests at some point, during which she collapsed the vein in my arm, turning it black. After a few days of commuting on the tube with a black arm, and getting a lot of disgusted looks from people who thought the skeletal woman with the black arm was a junkie, I showed my arm to my pharmacist. He was really concerned and told me to call up my GP. I duly did and was told there was nothing to be worried about.
On Tuesday 27th September, I was working at secondment when I checked my phone to find a combination of four missed calls and voicemails from my GP’s surgery all telling me to call urgently. I called and was told that I needed to come in urgently. I explained that I was at work and couldn’t come in until Thursday. They told me it was urgent, and I asked how urgent, they told me to come in on Thursday but that there were no appointments released yet. On Wednesday, I asked my mum to call up for me to make an appointmnet, but they told her I would have to come in at 8am on Thursday and someone would see me then.
Those two days were pretty terrifying, but I was so busy at work, and enjoying my secondment so much, that I wasn’t as concerned as perhaps I should have been. I was convinced that if it was something serious, my GP would have insisted I come in, rather than let me wait, and not even give me an appointment.
On Thursday 29th September, I got the bus to my GP’s surgery for 8am only to be told that no doctors would be in until 10am, and to come back at 11am. I almost didn’t bother going back as the trip to the surgery is a 40 minute round trip. I did though.
I sat down with my GP and told her that I’d been told to come in urgently. She had no idea what I was talking about, but got up my blood test results. Scrolling down, she stopped at my folic acid levels, which were very high. I only knew of folic acid in relation to pregnancy, so I was momentarily terrified that I was pregnant! She asked if I’d been taking any vitamins, which I had, and she attributed the result to that. She scrolled to the end and said “Ah, it’s your blood sugar. You have diabetes. Do you know what this is?” I replied “Yes. Type one or type two?” She said “We don’t know yet, but it’s more likely type one. How unwell are you feeling? Ordinarily we’d send people to hospital upon diagnosis.” I said I wasn’t feeling any worse than usual – after feeling this ill for months, my standards for feeling unwell were set pretty high. She told me I would be fine to go home, but to leave a urine sample. I remember these five minutes incredibly clearly, and I recall with a tinge of irony what she said to me as a I left her office – “In six weeks, you’ll be feeling back to normal.” It’s been a year now, and I can’t say I’ve felt “normal” since.
So I left having given a urine sample for who knows what, and with a sick note for work. I cried as I walked to the bus stop, not because I yet understood the full impact of my diagnosis, but because I felt incredibly alone and confused. I called my husband and told him, but said that I had been sent home so he didn’t need to come home from work (two hours away). I also rang my mum, who I also told not to come from work (five minutes away) because I just felt like being alone. I googled diabetes on the bus journey and immediately found out that I was only expected to live to sixty. Safe to say, I spent the rest of the bus journey with hot tears rolling down my cheeks.
I was supposed to see my friend at the Barbican, so naturally I did that. I had a giant slice of pecan pie, and it was bloody delicious – it was also the last slice of pecan pie I ate.
At around 4pm, my GP personally called me and told me I needed to go to A&E immediately because she had only just got around to testing my urine for ketones and they were “off the charts”. I had no idea what ketones were but I agreed to go to hospital. She told me that she had called my local hospital and told them to expect me. I told her that I was nowhere nearby, but that I could be there in an hour or so. She seemed pretty mortified.
I called my mum from the train to say that I had been told to go to hospital, and she picked me up from the station. I wanted to stop off for pizza but she wouldn’t let me – probably a good move!
I arrived at A&E, gave my name, and was ushered through past a full waiting room of quite disgruntled people, who were rather vocal about me “skipping the queue”. They actually tried to direct me to the children’s A&E because I think they saw the word ‘diabetes’ and assumed no adult could be newly-diagnosed. I was asked more than once if I was under sixteen, to which I replied I was twenty-four!
The nurse who first assessed me was absolutely lovely. I’d actually met her before twice – once when my grandma had a heart attack, and once when my mum was really sick from chemo. For the first time, I felt in safe hands. She was the first person to do a fingerstick test on me, and I scared her when it was too high to read (above 33 mmol/l or 594 mg/dl). I remember being told that my ketones were in the double digits, but I’m a little sceptical of that knowing that 3 is a very dangerous level. I know at some point later that evening my blood sugar was measured at 42/756, but even then I remember being told that it couldn’t read any higher.
It’s all a bit of a blur, but I spent the night in resus attached to a lot of different things whilst being treated for DKA, and my mum was told that my odds of surviving the night were stacked against me. My team were lovely, but I did overhear this, despite them thinking I was too out of it to know what was happening to me. It didn’t help that during that first night in resus (yes, there were more, but that’s for another time), both people on either side of me died quite dramatically.