Patient voices in type one diabetes – I would have done things differently.

[KERRI] I’m a type one diabetic and I’ve had it
since I was two. I’m now 29, as a teenager when it got really really
difficult. I started experimenting with insulin obviously I could feel that I
was having high blood sugars but I noticed I was losing weight dramatically,
which as a teenage girl I felt quite good at the time. [KATHERINE] It’s relatively common for
us to see people disengaging from their diabetes treatment it’s often people in
their late teens at that age it’s one of the most difficult times of life, you’ve
got a lot of peer pressure to conform to certain ideals in society and things
like that. So it’s very easy to want to ignore diabetes. [DANIEL] Seeing a psychologist
can be really helpful if you’re feeling stuck and frustrated with your diabetes.
It doesn’t mean you’ve got a mental health problem if you’re seeing a
psychologist, chronic health conditions are very difficult to manage and cope
with and many people benefit from seeing psychologist. [JASON] Before I was diagnosed for many years there was indications that I was diabetic but
I took absolutely no notice still to this day I haven’t really accepted it
but very hard to digest. I carried on for years and years paying no attention to
what I was told would happen. [AMANDA] People with type 1 diabetes don’t want type 1
diabetes so they often then close their eyes to it, but certainly as our
role it would be to try and bring the person into a place where they can deal
with their diabetes so therefore or lessen the risk of the complications of
diabetes. [KERRI] My dad’s actually type 1 diabetic as well we’d have regular
meetings he’d help me with my blood sugars and what dosages to give. My mum
would always check as well and just check that I’m doing my blood sugars
and I’d just say yeah I’m doing them, they’ve been great in range so they were
supportive as what they could be but I was still still hiding it and lying to
them about it. I think it was a psychological condition but I wasn’t
aware of that at the time. I genuinely felt like I would just get away with it.
That’s how I felt. [DANIEL] A lot of patients feel that they’re not coping well with their
diabetes, feeling that they’re failing and that can mean that they look after
themselves, engage with their diabetes much less well. [RUSTAM] Difficulties managing
diabetes can lead to lots of complications and we think particularly
when patients have had poor control for a long time, that can affect their
eyes, it can also affect their kidneys and affect their feet as well. If people had
type 2 diabetes particularly but also type 1 diabetes increased risk of having
heart disease, stroke disease, and leg ulcers as well. [JASON] I stopped working just
over a year ago that wasn’t through choice. I started obviously going
downhill at work maybe a year before I finished. I spent a lot of time hiding
away in the office I became a bit of an office manager not doing anything.
Sleeping believe it or not. How could I get away with that? I just locked the
door and I’d made sure no one no one ever bothered me. I didn’t know what to
do you know I had to provide for my family
and had to pay the bills, survival management that’s that’s basically what
I did, hid away. [KATHERINE] The sort of impact that complications may have is that people
may need to attend more hospital appointments for instance if they need
to go to the eye clinic they might need to have treatment to their eyes and they
might suffer some degree of visual loss. They may get problems with the nerves
affecting their gut as well which can cause vomiting and diarrhea and
things like that that can be quite intrusive to everyday life. [KERRI] Between 2011
and 2012 I started to experience my first complications, so I’d have some tummy
issues where I was being sick quite a lot and I’d get
odd pains in my legs and I was diagnosed with gastroparesis and nerve
damage in my legs. Still didn’t really take much notice but it was 2016 and I
woke up with a blurred eye, my right eye was blurred and I went to the eye
hospital and they told me that I’d had a retinopathy bleed and they sent me for
emergency surgery the next day, and that’s when my life completely changed.
For seven months was a massive battle where I had seven eye operations in
seven months and as a result of that I am now blind in my left eye, so that was
that was a really tough tough year and then it went on to 2017 with eye
injections as well so that was really really really tough
time. [JASON] I’m now currently sitting at 30 eye injections that’s 30 each eye. I have lots of
nerve damage throughout both legs. I now have no working kidneys, no working
pancreas and have dialysis at the moment four times a week due to not being
able to clear any fluids and a very tired tired life. Not the best situation
to be in. [KERRI] I was physically blind for up to six weeks at a time, six weeks was the
maximum time that I was blind him in both eyes. I had to have training on
using a white cane to be able to get around. My anxiety was huge because I
couldn’t go out the house because there had been a time where I’d been out with
my friends and could see and within minutes I was blind so I just never knew
when it was going to happen when I was going to have an eye bleed. So I
couldn’t go out with my friends as much as I wanted, I couldn’t go out with my
boyfriend or see family as much as I wanted or even keep in touch with them texting and Facebook and all that sort of stuff. So yeah it would really
took a battering on my psychological health at the time. [AMANDA]
Every single person diagnosed with type 1 diabetes feels overwhelmed at some
point during their diabetes life. We sit and we will listen to people and we will
explain that we’re not there to judge and we will explain that we were
actually there to help them and to support them and that actually you
know nobody’s perfect in life and we all make mistakes and just to move them
through that period of feeling the way they do. [JASON] I now have identified
heart disease so that’s now put me in a position where they don’t think I’m
strong enough to have a pancreas and kidney transplant so it looks like
just a kidney transplant. To have a kidney, to not have to go to dialysis at
the moment four times a week for 4 hour sessions it would be a transformation. [RUSTAM]
The complications have a huge impact on people’s lives, heart failure is
increasingly recognized as a complication of diabetes and an
increasingly common complication, and that makes people breathless it makes
them tired it makes them unable to do the job that
they want to do or maybe to enjoy their family life that they want to enjoy so
there are lots of ways in which diabetes affects people’s ability to to lead
what we might consider to be a normal life or a healthy life. [KERRI] It’s not just the eye issues that I’m dealing with now so I now have kidney disease stage four
and I’m now on a waiting list for a kidney and pancreas transplant. They
realized my kidneys were at 30% function and they are now at 18%. The average
waiting time they said is is 12 to 18 months but I’ve already received one
call already so I just never know if I’m coming or going but I know it’s a
massive massive positive but it’s it’s a very scary journey at the moment that I’m on.
[JASON] I don’t know if it’s if it’s because of the age I was I was at that age I felt
bulletproof I really did you know heart attacks getting old strokes things that
didn’t happen to me, ill health wouldn’t happen to me. You know I was thinking 10
years down the line god I’m so cool it doesn’t matter if I’m alive or not you
know 15 or 20 years down the line I am now there 15 or 20 years down the line, I am still
alive and I’m paying for it now. I would I would do things different
definitely do things different. [AMANDA] If you’re struggling with your type 1 diabetes
control then we would want you to call us, make an appointment, email us and
indeed offer an open-door policy to people that are struggling. Please come
in please make an appointment and we will sit and have a cup of coffee, a
cup of tea and a chat. [KERRI] You’re not indestructible it will happen, it will,
inevitably it will. No one’s going to get away with it. If you don’t crack on
and look after yourself one complication will appear 2 3 4 they will keep coming.
It will happen. I just feel like you should take the support that you get.
Try not to fight it and try not to hide from it. Speak to people if you feel that
you are mentally struggling with it, speak to people because that’s the only
thing that can get you through sometimes is opening up, being honest and you won’t
be in trouble you’ll be helped. [KATHERINE] What we want to do is
be the person who helps you get where you want to be and usually we do that by
trying to make small changes and small targets and helping you follow those
through and hopefully being the person who listens rather than the person who
just tells you what to do.[JASON] You’re not bulletproof you do need to take it
seriously because I’m an example of how not to do it and trust me I’ll swap you for
your position any time. I don’t want to be in this position and it’s a situation
I’ve brought upon myself purely down to people wanting and willing to help me
but I took no notice because it doesn’t happen to me. [RUSTAM]
Diabetes is a marathon it’s not a sprint and there will be some times when you
feel really passionate and engaged and fully on board, there’ll be other times
when you’ll feel washed out and exhausted and in a sense I want to say
that’s ok you shouldn’t feel ashamed by that we’re
not going to blame you about that we’re not going to judge you for that this is
about just coming along and sharing some of those burdens and if we can help you
if we can unload some of those burdens if we can give you a bit of advice that
makes the diabetes just that bit more manageable we would love to do that.[JASON] I
have two young children 10 and 12, a good wife, my future it’s not something that I
really talk about much a future do I do I have a future? I guess I do a
lot of it hinges on having a transplant. [DANIEL] For people who are struggling with their
diabetes management it’s really important to reach out whether that
through your GP, through your nurse or diabetes doctor and let them know and
they should be able to refer you or put you in contact with sources of help. [KERRI]
Hopefully after transplant I have been told that if everything runs smoothly and
there’s no complications within a year then I should be able to try for a
family, so I’m that’s my that’s my main goal and that’s what’s keeping me going
at the moment, so hopefully in the future after the double transplant I’ll be
back to a real healthy self and hopefully be able to start family

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