I am currently battling to try and get the green light for a FreeStyle Libre. Boy, I can tell you, it’s not been easy! First of all, the entire issue was due to the Libre not being funded in various areas which obviously lead to the dreaded “postcode lottery” that swept the nation. Slowly but surely the Libre has been funded and approved in a growing number of areas, which is fabulous to see happening. The postcode lottery will officially be brought to an end by 1st April 2019. However, there is a ridiculous criteria which you have to meet in order to be put forward for an application to receive a Libre. The terms of the criteria are highly unfair and seem to reward people who aren’t able to take care of themselves, rather than reward the people who try bloody hard to take control of their condition. The criteria list taken from the Diabetes UK website is as follows;
- Patients who undertake intensive monitoring. (Basically people who are testing their blood sugar 8 or more times a day! How do they even find the time to do that?!)
- People who meet the current criteria for insulin pump therapy. (People who have a HBA1c of 8.5% and higher or people who are having disabling hypos)
- People who have recently developed impaired awareness for hypos. (Not having any or low awareness)
- Frequent hospital admissions for DKA or hypos.
- People who require a third party to monitor blood sugar levels.
The criteria has some understandable points but others are ridiculous in my opinion. Who has time to check their blood sugar 8 or more times a day?! You’re not even going to get accurate readings if you’re checking that often because you’re not giving your insulin enough time to work. It’s just pointless. It does seem that the more clueless you are (unless you need help from a carer or third party, then that’s an exception) the more likely you are to be rewarded with this incredible technology that everyone is desperate to have. Whilst the rest of us are left up shit creek without a paddle.
Saying all this, I have been working with the doctor to try and get me seen and approved for a Libre. So fingers crossed! It’s a bit of a tricky game, but I’m certain I’ll get there in the end. I’ve got to keep my chin up and fight for what’s right.
It’s so difficult when you’re diabetic. You have so many factors that affect your blood glucose control and it’s nearly impossible to get it spot on and within range 100% of the time. You’d have to be in a boring routine, have no emotion, eat the same low carb meals every day and never be ill. I’m sure that’s how you’d achieve the blood sugar readings of a non diabetic, but who wants to live like that?
Striving to achieve perfect blood sugar is a constant battle and it can really mess with your emotions. I must admit, there have been numerous times throughout my 12 years of diagnosis where I have checked my blood sugar and shouted “WHY?!” at my meter. Sometimes it really does feel like you have no idea what’s actually going on inside your body and there really is no explanation for specific outcomes. These things happen and you just can’t be perfect all the time. Is that ok though? Yes, that is more than ok because you’re doing really well regardless. You need to give yourself credit for keeping yourself alive and well.
It’s recently began to dawn on me that I also don’t need to feel ashamed or embarrassed about not doing as well as somebody else is. I don’t know what everyone else has gone through and I don’t know how hard they have worked to get to the level of control they are at today. Up until recently I used to die inside a little bit whenever I was asked about my levels or had to show them to a nurse or medical professional. If I’d had a particularly bad week it would make me feel like a massive failure when looking at those readings again. Like I’ve said though, I’ve learned now not to be embarrassed if I’ve had a bad week. It really does happen to everyone! Keep your chin up and keep soldiering on, you’ll get there in the end.
I’m trying really hard on focusing on bringing my HBA1c level down. I was shocked at finding theta my HBA1c had gone up by 0.1 after Panto because I thought it was going to be a lot worse! I am now sitting at 7.5% (58mmols), which in hindsight could be so much worse. I really do want to be one of these people with an insanely well controlled HBA1c, but, cor blimey, it’s a battle. A friend of mine who is also a type 1 made a good point in regards to HBA1c readings recently. He said “You have a couple of hypos a day and then your reading will come right down. It’s very misleading”. He’s right, it is very misleading. However, I guess you know personally if your HBA1c is lower because you’ve been well controlled or not. For me, I just want to see results that reflect how well I am doing.
I’ve read a lot recently that refer to mental health and type 1. Not necessarily referring to individuals with existing mental health conditions and type 1 combined, but the impact having type 1 generally has on your mental health. Us type 1s know that diabetes is a minefield. It’s never straightforward and no 2 days are the same. One of the hardest questions that people ask is; “It’s manageable though isn’t it?”
Yes, in a nutshell diabetes is manageable but that doesn’t mean it’s easy to manage! There are so many factors that you have to take into consideration when “managing” your condition – and mental health is one of them.
Diabetes really can mess with your emotions. It frustrates, elates, angers, saddens and baffles you regularly and it can send your mind into all sorts of turmoil. You find that you ask yourself questions that you can’t quite find the answer too. It’s really hard work and there are a lot more factors to it than people realise, it’s not just pricking your finger and injecting yourself. You have so much more to consider:
- Have I checked my blood sugar?
- I there somewhere to wash my hands so I can check my blood sugar and have an accurate reading?
- What’s my level – is it high/low?
- Do I need to do a correction dose with my food/inject less for low blood sugar?
- What am I going to eat?
- How many grams of carbs are in my food?
- How much insulin am I injecting for my food?
- Should I eat that snack knowing it will give me a higher reading before my next meal?
- Did I inject correctly for my food earlier?
- Is my blood sugar too high or too low?
- Have I done any exercise/am I going to do any exercise?
- I’m really ill today, how much should I be injecting?
- It’s really hot today, should I take more or less insulin?
- I’m really excited about something, Will this have an impact on my blood sugar?
- If I check my blood and it’s too high, how will that make me feel?
These points aren’t even the extent of what we all go through on a daily basis, there are many more! Each and every one of us type 1s should take great pride in the fact we go through these motions every day and we’re still here, keeping ourselves well and alive!
Don’t let diabetes get you down. No matter how difficult it gets and how much you feel like you need to fight – keep going. You’re doing a great job. There are so many others like you and we’re all here to help each other and give our support. Don’t be afraid to reach out to the diabetic community and seek guidance or advice. We’ve all been through it too. Keep going, you’re doing great!