Having the right kind of medication to treat your illnesses is important. The wrong medications can cause severe problems and the same can be said of insulin for diabetics. After being on the wrong insulin for around a year and a half I had had enough of being miserable and feeling numb to the world. I had confessed how scared I felt to my mum, telling her about my lack of hypo warning signs, the way I felt like everything was part a dream, unreal and the strange, almost suicidal thoughts I was having about wanting to stand in front of traffic to see if it would float right through me – proving I was in a dream.
Throughout the last year and a half I had gone from a shy but generally happy person who loved to laugh but who had terrible blood sugar control, to a person who didn’t laugh, didn’t want to leave the house, hated her life and still had bad blood sugar control. Except I couldn’t even feel what my blood sugars were like any more and it was all because of the brand new analogue insulin I was taking. My mum had listened to my problems and was now taking me to the hospital, armed with the information she had gathered from a lot of searching and talking to people online, information which could change my life…this time for the better.
A forgotten insulin
I remember sitting in the consultant’s room at my local hospital and not quite remembering how I had gotten there. This was what travelling was like for me now I was taking analogue insulin, I had gotten used to zoning out and not quite knowing how I got somewhere (and sometimes forgetting even why I was there). I had become so bad that I started to fear leaving the house and needed someone with me whenever I went somewhere as I just didn’t trust myself to be able to keep myself safe.
The consultant I saw was different from the doctor who had put me on analogue insulin. It seems he had since retired (which absolved him of any wrongdoing – I thought) and now I was seeing someone I didn’t know. My mum did most of the talking, explaining how bad I had become and how there were plenty of people who had the same symptoms as me. She told the doctor all about how animal insulin had fixed every one of those other people and how I should be prescribed it too. The doctor listened, but at the first mention of ‘animal insulin’ his face changed. He began explaining how it no longer existed, how it was an old insulin and no-one ever used it anymore. He was so adamant that it was no longer available that he just sat there and shrugged his shoulders.
Mum persisted though and said that we were not leaving until he prescribed what she knew was available, and so we sat there and sat while the doctor left the room and about half an hour later he returned, with a strange expression on his face. He handed me the prescription for porcine neutral and porcine isophane insulins and just told me to come back if I had any problems. He didn’t want to walk me through how much to take, or check if I understood what I was doing (as all doctors always did on diabetic appointments) he just wanted to get rid of me and see his next patient.
The sunny day of truth
Getting a prescription for the animal insulin was the first hurdle. The second was getting hold of it from a chemist. There was a shortage of the cartridges I needed at the time and a couple of the pharmacists/chemists (including a well-known high street store) said they couldn’t get hold of it for me at all. Getting a supply took a while, it was about another month before I could actually try taking the insulin and even then I wasn’t sure I was even ready.
I waited until the morning on a day I didn’t have to go out. I began by swapping both my breakfast fast-acting (bolus) insulin and my morning background (basal) insulin and reduced the numbers down to make sure I didn’t suffer some freak hypo. I didn’t tell anyone I was changing the insulin yet, I wanted to see if anything happened, and…nothing did. Not at first. It takes time for insulin to get into the system and even longer for an old one to leave so although I was disappointed at first, I just got on with my day as usual.
I had breakfast and later, after a few hours of being a bit lazy I had my lunch. My lunch was normal, nothing different to the last few months, although my blood sugars were still off. I went to do the washing up afterwards and looked out of the window. It was the middle of the summer, but it was a nice cool day, like a typical breezy August day. The grass in my garden had some beautiful orangey hues of the sun making the grass look especially green and beautiful…wait…
I could see the green. I could see the orange. I could see colours, they were so vivid, beautiful and…It looked real, the grass looked real, and so 3-dimensional! For over a year my ability to see colours was clouded in a grey world, my ability to see anything as really real and 3-dimensional was lost, instead my world looked flat, dull and unreal. But I kept staring into the garden and everything felt alive. And then I realised something else. I felt real too. I felt myself feeling calm. I felt so calm and it was only then I realised I’d been living with a fast and stressed out heart for months. And yet here I was now feeling so…normal. And I started to smile, I even started to laugh.
The hypo warning
That day I told my family what had happened, how I felt so good again, grounded and happy. But I wasn’t truly happy until a few days later when I was watching a show before dinner. I was laughing hysterically at a sitcom I hadn’t been able to enjoy for months. It felt good to laugh aloud again, and it felt good to feel so happy and alive. As with most things that make me laugh, it also sent my blood sugar south.
Before the show was even over, I felt terrible. I was shaking, sweating and felt so hungry. So I did a blood test before drinking juice to fix the hypo I was in. I didn’t need to do the blood test though, I already knew what was happening to me. I was feeling a hypo attack. I was actually feeling it! After a year and a half of feeling numb, of never knowing whether I was in a hypo or not. After so long of feeling lost and terrified that I could collapse without warning I was back to feeling normal again. I could feel the hypo as it happened and I could treat myself without needed to do hundreds of blood tests throughout the day. I was finally feeling like I had felt years before…like I should have felt the last year and a half.
Analogue insulin was the worst thing that ever happened to me and I have been adamant to never go back to taking what made me so ill in the first place. While my blood sugars are not perfect today, there is no way I would ever let myself be in that state again. I was scared, I felt alone and I became near-suicidal, and all because of a change in the insulin I was injecting. Because one doctor had told me it was the solution to all my problems, and I trusted him without question.
These days I’m more wary of what doctors suggest for me and this entire event in my life has made me often question whether doctors are well-informed themselves. The doctor who told me repeatedly that animal insulin wasn’t available was adamant that he was right. And maybe in his own mind he didn’t know that animal insulin was available – many medical text I’ve read today state that animal insulins are a medicine that’s no longer available. The doctor who prescribed me all three types of analogue insulin was so adamant that this insulin was for my benefit, but having since seen how much merchandise he had from the company who made the insulin, I can’t help but wonder how influenced he was in that decision.
Patients should have a right to be prescribed what works for them, and to be prescribed a new type of insulin (or any other medications) until you find the one that suits you. And when we have a medicine that works, we should be able to keep using it for however long we need. Nobody should take our medications away from us, and every doctor and person in the medical profession should listen to patients when they say they are experiencing problems. As patients, especially those with chronic long-term medicated conditions, we know if a medicine is causing us issues. We should be listened to and we need to speak up and tell doctors and nurses when things are not working for us. I only got the insulin I needed, the insulin which gave me back my life, because I (along with my family) fought for it.
If any of you feel you need to change your medication, perhaps to animal insulin or something else, don’t be afraid of standing up and telling your doctors what you need. And go to another doctor if necessary, until you find one who is open and listens. Patients should always have a choice.
Thank you for following me on my journey back into my life on analogue insulin. If you have any questions plesae do get in touch and I do hope that whatever medications you might be taking, that you never have to go through the nightmoare I went through. ❤
Have you struggled to get a medication you needed? Have you had problems using a certain insulin or struggled to get your doctor to listen to you? Let me know what you think in the comments below 🙂