Wednesday, 10 May 2017

4 Years of Living with Type 1 Diabetes!!

On this day, 4 years ago, I was diagnosed with Type 1 Diabetes. It has affected a lot of aspects of my life, so I made this video to explain some of the things I live with everyday!

I hope you enjoy the video!

Until Next Time,

Alyssa x

Monday, 8 May 2017

If it doesn’t affect you, it doesn’t matter, right?

There are so many different problems that people face, whether it is disability, their home situation, or the discrimination they receive, and everyone has had a different experience of life. I have come across people that aren’t empathetic towards people who are struggling, purely because they have no knowledge or experience of it, and they just write off the problem. Personally, I feel I have done this before. If someone comes to me with an issue I am unfamiliar with, I struggle to comprehend and respond to the problem fully. I do, however, try not to judge anyone, as I do not know their story or any of the struggles they have faced.

I do have a chronic, life threatening health condition, Type 1 Diabetes, and have faced people not understanding why some things happen. Often the seriousness of this is misunderstood, and people judge me if my blood sugar goes low or goes high, often asking how I let that happen. I have struggled, but I try not to compare my own suffering or experience with other people, because that can cause judgement if we didn’t deal with a situation in the same way.

I write about my experiences with diabetes, because I deal with it every day. It is a topic I am very familiar with. There are, however, a lot of issues that don’t affect me directly that are just as important as this. There are many issues that are raised, for example racism and feminism, that many dismiss because it doesn’t have a direct impact on their lives. I have witnessed people claim that it doesn’t even exist, because they are naive towards its impact. People don’t campaign for difference for no reason.

Be open-minded. If someone raises a concern about a topic you are unfamiliar with, discuss it, learn the facts and don’t be judgmental. Everyone is from different cultures, backgrounds and have different stories. People struggle in different ways, which are often private, and most actions stem from their backgrounds. Before being discriminatory, thinking or saying anything judgmental, remember that just because their issues don’t affect you directly, that doesn’t mean that it isn’t important. Words have impact, so think before you speak!

Until Next Time,

Alyssa x

Tuesday, 28 February 2017

Basic Facts About Type 1 Diabetes

I recently had someone approach me, and say "I know you have diabetes, but I don't actually know what that is". I decided that instead of explaining every detail of my Type 1 Diabetes to every person I meet, I should write a blog and tell people about it.

  1. There are 2 Types of Diabetes. Every Type 1 Diabetic is insulin dependent because the cells that make insulin in their bodies are dead. Type 2 diabetes can be related to diet, it can also be genetic but they are not always dependent on insulin.
  2. Firstly, Type 1 Diabetes occurs through NO FAULT of their own. It's not because we ate too much sugar or anything. It is an autoimmune disease which means my body essentially attacked it's own pancreas cells.
  3. I need to replace the insulin my pancreas can no longer make. There are different methods to do this. Some people inject themselves with insulin, normally a different kind of insulin for food and a different kind to cover your bodies natural function. I myself have what is called an insulin pump. I have a cannula attached to my body 24/7, constantly giving me insulin. I still have to tell my insulin pump how much insulin to give me based on how much I eat and how much I exercise, so it is not easier than injections, just different.
    A picture of the insulin pump I carry around at all times
  4. I have to do a finger prick and test my blood sugar to make sure everything is okay, so I know how much insulin to give and so I have an idea of what I'm dealing with. There are lots of different meters that check blood sugar, so if you see  2 different diabetics checking on different meters, everyone just does things slightly differently. I have a sensor that checks my blood sugar every 5 minutes, which sends a signal to my insulin pump, and alarms me to tell me if my blood sugar is dropping or not. It is not a replacement for a finger prick test though as it isn't always as accurate.
    Inside my blood testing kit, which includes a meter, blood testing strips, a finger pricker and a ketone meter
  5. I wasn't born with Type 1 Diabetes! So many people think this, but I developed type 1 diabetes when I was 14, some people can develop it as early as 2 years old or as late as 50 years old, it is different for everybody.
  6. Type 1 Diabetes is really hard to control. With so many factors affecting my body, it is rare that I get everything spot on first time. If I snap at you, it is most likely that my blood sugar is too high, or too low, so please don't take it personally!
  7. When my blood sugar is high, I can't concentrate. My words don't seem to be able to form, I struggle reading, I'm constantly thirsty and need the toilet all the time. I try to still do everything I can, but there are times when I have to admit defeat, and go for a sleep.
  8. There is NO CURE currently for Type 1 Diabetes. I will have to replace the insulin in my body for the rest of my life, unless they find a cure in my lifetime.

Personally, Type 1 Diabetes makes me soo tired. I can't do the whole staying awake til 3 o'clock in the morning unless I have a nap in the middle of the day. This one is personal, but some people don't realise how tiring it is to take care of yourself all day, every day, and sometimes not even see results!

Yes, people who have type 1 diabetes can do whatever they want, within reason (there are some careers we can't do). The current prime minisiter, Theresa May, is Type 1 Diabetic! That does not mean I do not struggle with it everyday, I have just become very good at concealing when I am unwell, and just getting on with things.

And if there are any questions that I did not answer in this blog, please just ask! Honestly, I would rather someone asked me if they were unsure of anything rather than presume the wrong thing.

Until Next Time, 

Alyssa x

Ps This blog is my interpretation of Type 1 Diabetes from what I have lived. I apologise if there is anything incorrect in it.

Monday, 20 February 2017

Developing Type 1 in Mid-life vs Developing Type 1 as a Teenager

I asked Adrian Long, someone I met at an event for diabetic people, to talk about how he got diagnosed with Type 1 Diabetes a lot later in life than myself, and I wanted to get a different perspective on how different someone's life can be depending on what stage in their life they were diagnosed.

This is what Adrian wrote:

Developing Type One in mid-life
I was diagnosed in December 1997, a few weeks after my 40th birthday. Quite a welcome to middle age! At the time, doctors told me it was highly unusual to develop Type One so relatively late in life*.
It was a genuinely difficult moment for me. Until that age, I had lived a life with minimal contact with the health service. I went an entire secondary school career (seven years) without a single day's sickness absence and as an adult I was one of those people who was “never ill”. Before the short illness which preceded my diagnosis, I had worked for 17 years as a teacher with a total of four days off sick (two lots of two). Moreover, I was a slim, healthy and active person, who cycled to work, tended an extensive garden and walked from my home to the local shops rather than driving.
At first, I was misdiagnosed as Type Two. My GP told me to "cut out all sugary foods", which puzzled me somewhat, as I have always had a famously "unsweet tooth"- there was little or nothing to cut down on. However, I agreed to do so, and came back a few days later - just before Christmas - to discover that my sugar level was higher than ever, so the doctor, persisting in his misdiagnosis, put me on medication for Type Two. At the time, of course, I knew nothing about either type, and this was in the days before google, so no chance for any online research.
It was only when I reported back with an even higher blood sugar level and no sign of feeling better that he finally wondered if it might be late-onset Type One. Off to hospital I went (only as an out-patient), where a consultant agreed it certainly was Type One, and referred me to the clinic to learn the arts of injection and blood testing. I did all this without missing any days off work, despite feeling very tired. Once the insulin started to have an effect (and that effect comes on almost instantly, as anyone with Type One will tell you), I was soon back to normal and in the years since then I have continued to take on all that life and work throw at me, all with an unblemished attendance record in a very stressful job.
After diagnosis, I found it very hard to accept my own limitations, drawing admiration from some, but worry and frustration to my own family. As an adult accustomed to a position of being “in charge” (I am a teacher), it is difficult to get used to sometimes being a bit pathetic or making a fool of yourself, for example when hypo. Thankfully, my control and hypo awareness were generally good, but I had my moments, most famously when I suddenly found myself sitting in my office at school eating biscuits accompanied by a Sixth Form student, with no idea how I had got there. I had been teaching a class and had apparently just “faded out” and stopped talking, so with commendable presence of mind, one of the group who knew of my condition took me by the hand and guided me to my nearby office, where he knew I kept my emergency supplies.
Embarrassing and amusing in hindsight, but I must say I always feel lucky to have missed diabetes as a child, teenager or young adult. It seems to me self-evident that there are multiple extra issues with the condition for those who are diagnosed young:
For very young children, of course, the issues are for the parents as much as the child. I shudder to think of the worry and heartache felt by parents having to deal with such a fickle condition, and in effect needing to act as the child's pancreas and I can well imagine the additional worries when a child starts school, or moves from primary to secondary.
But let’s not forget the child: it is so difficult to be fussed over, to be told not to do this, or be careful when you do that. Childhood has become so risk-averse in modern times, but for the diabetic child there's a whole extra layer of risk, and it's a real risk as well.

Then there's teenagers, who have to endure living with a condition that inhibits their freedom just at the time in their life when they want to start to express that freedom. At some point, possibly a source of disagreement, there’s the difficulty of taking over their own testing and insulin dosing after their parents have been doing it. Then there’s the daft and often downright nasty things that get said at school to kids who inject themselves, prick their fingers and sometimes start acting strangely. There are issues surrounding weight and food, especially for self-conscious adolescent girls. Sleepovers, sport, parties, trips and holidays all bring extra complications, and that’s before we even mention the effect of growing up, puberty and hormones. All of it even more fraught with complications for girls than boys.
For mid and later teens, the expected lifestyle is so fundamentally incompatible with diabetic life that I really feel for them. I wasn't exactly wild in my Sixth Form and student days, but I nevertheless enjoyed my fair share of late nights, missed meals and generally carefree spontaneity. If a young diabetic wants to enjoy drinking and clubbing, the hazards are self-evident.
Even for younger adults, diabetes is no friend. Busy lives, building a career and setting up home all carry risks, stresses and strains, and what about parenthood? I hear many a tale of sleepless nights with new babies made worse by diabetes. And let's not even mention the potential minefield of pregnancy. I so admire the women I know who have trodden that path with diabetes in tow.
I am in no doubt that Type One diabetes is best suited to sedate middle age - which is the age I was when I got it. Through #GBDOC I have in recent years got to know many other Type Ones, nearly all younger than me and the majority of them female. Unsurprisingly, most of them seem to have a more difficult time with diabetes than I normally do, but then I'm a man in my fifties who leads a pretty sedate and largely predictable life. Type One, male, middle aged and boring are a good match I think.

Adrian Long

*It has become increasingly common and accepted that Type One can come on at any age. UK Prime Minister Theresa May developed Type One at the age of 56

Being diagnosed as a 14-year-old girl, it was hard, but I wasn’t in the middle of a career that could be affected by type 1 as Adrian was. I did however go through a big transition of change in school, as I was suddenly very different from everyone else. I couldn’t go and get a Chinese takeaway at lunch like a lot of my peers did, and things like school trips were difficult. I did deal with it all very well at the start, just getting on with what I needed to do, but as I have moved away from home, I have found things a bit more difficult. The independence I now have, which Adrian had for a while before he was diagnosed, has been difficult for me to adjust to in terms of controlling my type 1 diabetes. The lifestyle I have now is completely different to this time last year, and it is yet another adjustment for me.

I wonder if I had been diagnosed as a young child, growing up with type 1 Diabetes throughout all the changes in my life, things would be easier with the massive changes that have happened in my life right now. On the other hand, Type 1 Diabetes is hard to handle in all stages of life.

In terms of Type 1 Diabetes being more difficult as a female, there are a lot of different factors all genders face. Females do carry children and that can complicate things, but males may have other issues with things. I do find it hard having an insulin pump and wanting to wear a nice outfit, but males may feel just as self-conscious. Everyone is different and it is hard to judge whether someone has it easier based on the gender they are or the stage they are at in life.

Until Next Time,

Alyssa x

Adrian's Blog -
Adrian's Twitter - @AdrianLong3

Monday, 30 January 2017

The Positive Impact of Diabetes Technology

Before I was on an insulin pump, I was oblivious to the benefits that came along with diabetes technology. I was plodding along using Multiple Daily Injections (MDI), not realizing how much easier things could be for me. Things like exercise, hormone fluctuation and having more freedom with food could be improved with the use of diabetes technology. Before, I would delay having a snack because it contained too many carbohydrates and I didn't want to give myself another injection. I would have to have extra carbohydrates for exercise that I really didn't want to have. If I had any extra hormones such as adrenaline, my blood sugar would sky rocket, and it would be really hard to deal with.

I moved onto an insulin pump from MDI around 8 months after diagnosis. I had read about them online, after reading online forums about how good they were and the benefits of them, I decided to find out more. At my next clinic appointment, I asked my team if I would be eligible for it, and they said I was, because I was young (age 15), I did sports and I was struggling a bit with food. 2 months later I started my training on how to operate the pump, and a month later everything was up and running.

Having an insulin pump meant I could go out for a coffee with my friends and have something other than water or diet coke, because before I didn't want to have to take another injection. It meant I could control my blood sugar during exercise. I used to do rowing, and having the insulin pump meant I could use temporary basals (changing the background rate of insulin) so that my blood sugar was more stable. It also allowed me to have the occasional sleep in, because I didn't have to have my meals at as regular a time as when I was on MDI.

My insulin pump with a graph of the data my CGM provided
When I started having Hypoglycemic seizures, that changed things. I had to quit rowing, because I would be putting myself in danger if I had a seizure on the water while I was rowing. When I had a seizure whilst on a flume, and put myself in danger of drowning, that triggered me asking my clinic about the possibility of a CGM (continuous glucose monitor, a device which would alarm if my blood sugar was dropping) because I was starting to get very anxious when doing anything that could potentially drop my blood sugar.

My diabetes clinic sent a business case to the hospital to request funding for a CGM. Not many people get funded from the NHS for a CGM because it is so expensive, but because of my special circumstances, I was funded for full time use. After a meeting with my nurse, I got my CGM and it made my quality of life so much better. Before, I struggled so much with walking to school by myself or taking the bus by myself, just in case something happened and there wasnt anyone around to help. When I had the CGM, which linked to my insulin pump, alarming if my blood sugar was dropping so I could prevent my blood sugar going low, and in the case of my blood sugar actually going low, my insulin pump would suspend the flow of insulin to bring my blood sugar up. It helped my anxiety about doing things myself, made me less apprehensive about having blood sugar that was in range but towards the lower spectrum of things.

Diabetes technology has made my life with diabetes better. I can control exercise better, by lowering my insulin beforehand rather than having to consume extra sugar. I can eat as much or as little as I please (within reason of course) without having to give extra injections all the time. I can handle stress slightly better (although this is still a tricky topic!). Most of all, diabetes technology, specifically my CGM, has helped me with anxiety about doing things myself. I do everything everyone else can do, such as having a job, going to University, having alcohol, doing sports and generally being a student.

I don't feel I would be able to do all this to the extent I do, because I have the reassurance of the CGM. Diabetes Technology has made a positive impact on my Type 1 Diabetes and on my life.

Until Next Time,

Alyssa x

Monday, 19 December 2016

Dressing with Type 1 Diabetes

This may seem like a vain topic, but it is a very important in order to feel confident. I personally feel weighed down by all the diabetes supplies and having to constantly carry everything around with me is hard. I wear an insulin pump with long tubing, and also wear a CGM stuck to my arm, so I often find it difficult to find a discreet place to hide my pump, whilst it still being accessible.

Here is a few ways that you can store your pump!

  1. In the front of your bra
    • This can be convenient and discreet, except when you go to take out your insulin pump. If you take it out in front of males they tend to look very shocked and look away as quickly as they can!
    • There can also be a problem  if you wear a crop top, the tubing will show. I get this a lot as I always wear my cannula on my stomach or legs.
  2. You can keep it on your waistband or in your pocket of your trousers or skirt. This is comfortable and easily accessible but I find that it draws too much attention to the pump for my liking.
  3. You can wear it clipped to your underwear if you are wearing a dress, but you have to have quite sturdy pants to make sure it doesn't make your underwear fall down under a dress! If you do this, you can make it more secure by wearing tights over it. I like doing this because my pump becomes almost undetectable, but it also awkward if you need to get out your pump to bolus for food!
  4. You can buy a garter for your leg in which you can store your insulin pump if your wearing a tight dress. I personally don't like this because it falls down my leg, and if I wear it over tights the tights end up snagging on the Velcro
  5. You can get belts for your waist, which is perfect if your wear a loose fitting top. If the clothing is tight-fitting, I don't like wearing it because it sticks out too much. It is also not very accessible
  6. You can also wear your pump clipped to the side or back of the bra. I haven't really tried either but it is always an option.

If I'm wearing jeans, I'll just place my insulin pump in my pocket or clipped to my waistband but if I have a tight top, I clip my pump to the middle of my bra. It may stick out a little, and I may look like a robot when my pump lights up in between my chest, but it is discreet. Most of the time, if I am going out or wearing a nice outfit I will wear it in the middle or my bra.

As for my CGM, it is hard to hide, but I find that if I act confident about it, even if I'm not feeling confident, it is easier. If you act like you don't care about it being there, not many people will notice it or ask about it!

Everyone is different, and has different ways of dealing with things. Often I find it hard when I just want to enjoy myself and not think of diabetes, and so that is way I place my insulin pump in my bra, but it is personal preference!

Until Next Time,

Alyssa x

Ps I use a Medtronic Minimed insulin pump and Enlite CGM

Saturday, 19 November 2016

Moving Diabetes Teams

Moving Diabetes Care is scary. You have to start off fresh, explain every aspect of your care and bond with new Health Care Professionals. I was apprehensive to move diabetes teams when I came to university, because I wasn't sure if it was worth it, or if the new team would be good, but I'm really glad I moved.

It took a while for me to be referred to the new hospital. I had asked my old team to refer me, and I hadn't received an appointment yet, and when I had a problem and needed help, I didn't have a new team. I called my old hospital, and they told me they couldn't help me because I had been referred and was no longer on their system. I remember being so upset, because I didn't have my GP set up yet, I didn't have a new diabetes team and I was in limbo. I was floating between health boards and no one was really responsible for me.

I got an emergency appointment at the GP I had registered at, and they put in an emergency referral to the diabetes team. The following day, I got called by a nurse at the new hospital and got a face to face appointment straight away. I was really impressed at the pace in which the new hospital handled things. I remember at my old hospital it took a while to even get in touch with anyone, and the speed that the new hospital handled things was really impressive.

When my new team surprised me!
After my appointment with the nurse, I came away calm. The nurse I saw reassured me, helped me with my problem and applied for funding for my CGM straight away (which was another reason I was nervous about moving hospital, I was scared I wouldn't get funding). I was given all the contact details for the team, and told I would get a clinic appointment soon.

I got seen by a doctor at a clinic appointment within the month, which in terms of clinic appointments is really fast. I would have to wait at least 3 months before I got an appointment before. At my appointment, I got my annual bloods, height, weight and hba1c, the full works, done. I also saw my nurse for a full hour and got to see the doctor. We made a lot of progress, and I was really impressed by how the clinics were run, because my old hospital wasn't as smooth.

After my first clinic appointment
Since my clinic appointment last month, I have already had 3 appointments with my nurse, and calls in between to check how I'm doing. After I ended up in hospital from a hypo seizure, my nurse has been trying so hard and working with me to make sure it doesn't happen again.

All in all, I was so nervous about starting with a new diabetes team, having to reiterate every bit of my care, but I'm glad I moved. The hospital is really nearby, have made an effort to get to know me and have already helped me a lot.

Moving teams is nerve racking, but in my case it was worth it!

Until next time,

Alyssa x