Wednesday, 30 July 2014

Stage 3

(I totally forgot to post this on the day that I wrote it! So here is a little summary of stage 3- when I was actually doing it. I need to write a blog post about my overall experience, so I will do that in a minute)

Today is Wednesday. I'm surprised I can even keep up with the days being in here- sometimes it feels like all the days just merge together. Yesterday I moved onto stage 3 of my admission. Stage 3 means that I can do things by myself but with supervision from the nurses; I'm also allowed to leave the hospital in-between meals, but that also has to be supervised by someone else like a relative.

Yesterday evening my uncle visited and so he took me out after I ate my dinner; which was really nice because I hadn't been outside in a while! It felt so lovely to get some fresh air and it was a sunny evening so that made it even better. We walked down the road and just sat outside Pret A Manger and had some tea; it was so good to be around people other than patients and nurses, to hear noises other than patient buzzers and beeping machines, to smell nice food and not hospital food. Being stuck in here has actually made me appreciate things like that so much more; it's the little things. Just being outside has become such a huge thing for me, it wasn't before; but it is at the moment- while I'm cooped up in here, being outside is something that makes my day right now, it may not be a big thing to someone else, but to me, right now, it's a big thing! We were out for about an hour and a half and it was depressing when I had to come back to the ward, but I'm the type of person who likes to "live in the moment" and so I didn't let the thought of having to come back here ruin the time that I was spending away from the hospital, I just enjoyed it for what it was.

Today I had my first low blood sugar, and even though it made me feel bad, I was so happy to see numbers that were single figures. I never thought I would ever appreciate a low blood sugar, but I did and when I saw that low number I actually thought "finally!" finally my blood sugars were something other than high, I had to correct it with juice and not extra insulin and it felt...good? Obviously low blood sugars are awful and I really don't like them but I was relieved to see it because lately I've been constantly high and I got to the point where whenever I've been having my blood sugar checked I've been expecting to see an 11 or higher. So to finally see single figures was great. My waking blood sugars were actually 5.8 but sure enough after breakfast they were 10.4; and I just thought "oh great" they're probably going to be stubborn again now, but to see that something was actually doing it's job is good! I know to be low isn't "good" but it's the fact that my blood sugars responded to the insulin by going down...they went down and not up. So I was happy to see it. But obviously I don't want to be low all the time so don't get any ideas, diabetes!

I'm getting there though, hopefully stage 4 will commence soon and I'll be able to get out of here and hopefully I will leave the hospital feeling more in control of my diabetes.


Saturday, 26 July 2014

Planned admission: thoughts

I feel bad because I've been totally neglecting my blog. I think it's time to write a post. 

I have been in hospital since Monday, I'm here for a planned admission to help me get back on track with my diabetes and I can't tell you just how bored I am. Actually it's an understatement to say I'm bored. The admission is in four stages and currently I'm on stage 2.

From Monday morning until Wednesday evening I was on a sliding scale and the rate on it was doubled when I ate. The sliding scale helped my consultant work out how much insulin I need so my basal rates could be recalculated. Then on Wednesday evening the new basal rates were set up on my pump and so since then it has been a case of monitoring my blood sugars to see how my blood sugars react to the new basal rates. 

They're being a little bit stubborn right now and are running slightly high, around 10-13 quite a lot, but that's hardly anything compared to what my blood sugars were before coming into hospital. Things are being tweaked as we go along and I should be on stage 3 soon. 

I've been thinking about it and I feel like this is quite hard emotionally? Number one because I want to be at home because I miss being around my parents and family and I'm bored, secondly when I didn't look after my diabetes there was no effort required and it wasn't so much hard work and it wasn't a huge thing to me. Now that it is being looked after and things are being tweaked I am reminded how much it takes to get things right with diabetes, and I don't like that, I don't like the frustration that comes with it all and the wondering why your blood sugars have behaved that way etc. and I know things will be tweaked and my blood sugars will go down to normal eventually but at the moment while they're running a little high and not quite getting into the normal range it makes me want to give up, and go back to not bothering because then it doesn't bother me. 

I suppose those thoughts have only surfaced to me now, I think perhaps I maybe shut diabetes out for such a long time because one of the reasons was I just didn't want it and all the emotion that it comes along with to exist to me. Now they do, and the frustration towards diabetes is here and I want to go back to cutting it off- but that isn't wise, and it's not the right thing to do. The idea of getting back into control does exite me though and I look forward to the time when my diabetes will be routine to me again and hopefully that time will come before I leave the hospital. 

I'm feeling positive about it though. I know I just have to keep an open mind about it and keep pushing forward because it will all be totally worth it in the end. I have to remind myself that what I'm doing here is for the best and negativity shouldn't be in my mind. I'll learn to deal with the frustrations and all the emotions diabetes brings- and I think I'll take the short-lived frustrations of temporary bad blood sugars over the permanent feelings of hopelessness and wanting to give up. I think I should look at frustration as a good thing, as in... I care, I want things to be better now, and I'm done living with constant high blood sugars and all that they entail. 

I want to feel a low blood sugar again. I want my body to remember what it feels like to not be constantly high, my blood needs a break! It's been over five years now and what I never anticipated when I was diagnosed was just how much it would affect me emotionally and looking back I took it all in my stride so so much and even after being diagnosed I don't think I understood the full extent of what I was about to face, and diabetes has become so much more than what I ever thought it would be. 

I have every bit of faith in myself that I'll get back into routine because number one, I have so much support from my parents, family and friends, and number two I know there will be a point where my basal rates work perfectly- it's just a case of tweaking things right now and when that happens and things settle into place I know it will get "easier". I put easier in quotation marks because it's not really "easy" but hopefully you know what I mean. 

Stage 4 will be the real test when I am fully handed back control over my diabetes and I will do it all by myself again...but I know I can do it. I really do believe in myself for real this time and I have to just keep up with it and hopefully diabetes will truly be routine like brushing my teeth...what I was told on the day I was diagnosed over five years ago. 

-Ellie 



Tuesday, 15 July 2014

Insulin pumps: Don't be ashamed

I have been meaning to write this blog post for a little while now but have never found the time or the right moment, but in light of Sierra Sandison, a type 1 diabetic who recently won 'Miss Idaho 2014'  walking out onto the stage wearing a swimsuit and her insulin pump and posting the photo on facebook; I figured this is probably about the right time to talk about this particular subject.

Sierra posted the photo of her walking down the runway, insulin pump in tow, and wrote how she finally faced her fears and showed off her insulin pump...proudly. From being a part of Type One Teens and (obviously) being a diabetic myself, I know a lot of people feel ashamed or embarrassed of their insulin pump and they don't like to show it, and choosing clothes can be a struggle because anything that shows off their pump is out of the question, and it frustrates me. It makes me frustrated that society's idea of being "beautiful" and "fitting in" means that people who wear insulin pumps feel alienated and their insulin pump makes them feel ugly. It's not true. And it frustrates me even more because an insulin pump is not all that a person is and it most definitely does not define a person's value or their beauty.

I've seen various posts on Type One Teens from some of the girls talking about how they feel ashamed of their insulin pumps- and it might be easier for me to say this and realise this because I personally see no shame in my pump but I used to feel a bit embarrassed when I first got it, but this is what I've told them.

I think of it as though nobody can even see my insulin pump. When I'm out in public I just continue with whatever I'm doing, and there have been many times when I've been out in public and caught people blatantly staring at my insulin pump. It's curiosity. They are most probably looking at it trying to guess what it is, I can almost guarantee that they are not looking at it thinking "That's really ugly" or "That thing on her waist ruins her outfit". When I see people staring at it I either look back at them or I do nothing; I don't move it away, I don't cover it up, I do nothing. Perhaps if I see someone staring at it I should stare at the water bottle in their bag or at their phone- they're normal everyday things, right? They're nothing out of the ordinary, and if someone caught me staring they would probably wonder why I'm staring at something that really isn't all that interesting...that's probably what most of us as diabetics feel like to some extent when our medical devices are being stared down by a random stranger in public, because medical devices like insulin pumps and blood sugar meters are a diabetic's "normal" and I think of it as, my "normal" diabetes life does not stop in public, it continues outside of my house regardless of how peculiar my actions may look- and it frustrates us so much and makes us feel so self-conscious about it because for us giving insulin and checking blood sugar is a part of our daily lives, just as checking e-mail on the train is a part of someone else's daily life. (Although diabetes management is a bit more important than emails- but I'm hoping you get the idea of what I'm trying to say)

At times I like showing my insulin pump, when I look down at it it's a reminder of just how hard I fight everyday to be healthy and I'm proud of that. Plus an insulin pump is a major part of the battle with type one diabetes so embrace it for being such a fabulous piece of equipment! Here is another way of looking at it, random strangers in public do not know that you wear an insulin pump, so they most probably won't be looking for one! And even if they do notice it sitting on your waist or stuck to your arm just continue what you're doing- do not let your thoughts wander into a mad frenzy of "Oh my goodness my pump must look really bad right now!" or "How can I hide it, they must be judging me". Never ever forget that an insulin pump does not define you as a person, it is a small part of you, not the whole picture- and I can guarantee that most of the time, if not all the time, when someone looks at you they see you as you, and not as someone who wears an insulin pump.

You do not need to be ashamed, nor do you need to feel embarrassed of a medical device that is part of the reason that you're even able to go out in public and enjoy your life. And don't ever feel like an insulin pump makes you any less beautiful, because besides the beauty in your face, beauty is found in your general personality, strength, your courage and your ability to handle a life with type one diabetes with grace and your head held high.

-Ellie




Wednesday, 2 July 2014

Feeling disheartened

I haven't properly written a blog post since May. I wrote a quick one for my 5 year 'diaversary' but that's been it lately. I don't really know why I haven't blogged, I have been busy with exams and sixth form but things aren't so hectic with school any more; so I don't really have an excuse! I feel like I lost motivation for a little while, I just haven't felt the desire to write a blog like I used to. Everytime I've been on my laptop I open up blogger but I just don't post. Anyway, I've decided to put that behind me and get back to blogging properly again; my blog looks so empty.

I wish I could write this post and say that diabetes is going great; but it's not. I've been struggling more than ever with it lately, and to be quite honest I'm not sure why. I feel like it might have had something to do with being thrown off track due to exam stress and things like that, and I never picked myself back up again. In March my HbA1c was 9.7%, the first time I got it under 10% in literally about three years, maybe more. The last time I went to clinic was a couple of weeks ago and my HbA1c now stands at 14%, the highest it's ever been. It's safe to say I have been feeling so disheartened about it all lately, and I am really trying but it's just that nothing is a routine for me any more, so it's too easy for me to forget to do something or to not do it at all; and I'm struggling to get back into routine. Diabetes care does not come naturally to me any more.

When you're first diagnosed people always says "It will be second nature to you, like brushing your teeth, or breathing!" It started off like that, the first couple of years with diabetes were okay, and the last few years of it all I can think of is high HbA1c's, and I wish that I was a "good" diabetic and did everything I should- but it's almost like because I lived eleven years without being a diabetic, my brain finds a way to get it back to that. I know it can't be obviously, I know I can't run away from it and I have to face it- but saying that, it's not as if I'm in denial about it, I'm aware of the fact that diabetes isn't going well at the moment, and I am aware of the fact that my blood sugars are high a lot, but I just really am struggling to get back on top of it.

I know what high blood sugar can do to me, I know how much my body will suffer in the long-run if I don't get things back under control but I'm working on it. I really am. I want to get back into control, but I'm going to run into times when I struggle, I know that. But I get really frustrated when I feel like I just can't do it, and it's really easy to feel disheartened. I don't want to struggle with it, but the fact is that I do, and everyone deals with diabetes differently and I'm just one of those diabetics who runs into "diabetes burnout" more often than not. I know looking after diabetes can be done, and I know there are so many people who go above and beyond despite type one diabetes- but then I always wonder how they do it, I wonder how they always find the drive to test and inject and things...I must sound so silly saying it but it's true, I wonder why I don't have the intense drive and they do. I want it.

I don't feel "depressed" about it, just a little down. And I'm struggling to be positive about it at the moment, until I know that I'm doing better I just feel so discouraged. I keep thinking about being co-chair of Type 1 Parliament and speaking in Parliament for Diabetes UK, and attending the JDRF Gala, and my blog and how positive about it I can be; but then I think- how can I be trying to help people when it appears I can't even help myself? I keep feeling like I've never been the right person for any of that stuff. Then I remember everyone has their ups and downs and that what I feel right now about diabetes is just a phase. I love advocating for it and sometimes I feel like my passion to raise awareness and advocate is enhanced by the fact that for me, it isn't a breeze and I've definitely experienced the ups and downs with diabetes. I can see it from both sides most definitely. And I have really realised lately that a life with type one diabetes is truly bitter sweet.

When I was diagnosed I don't think I thought as far ahead as 5 years, I was just taking diabetes one year at a time, well; a day at a time but you know what I mean. I don't think I really had any expectations or goals of where I wanted to be in 5 years in terms of diabetes- and now that I'm here I wish I did set myself some goals, it might have helped me keep up motivation and keep up a routine. I have the desire to get back into control but just can't seem to get there. I sound like such a broken record; and what I'm saying may not make much sense because I'm finding it difficult to express what position I'm in right now. It's definitely 'diabetes burnout' but I just don't know how to explain it.

Both me and my mum got upset over my HbA1c, my mum probably more than me. But I know it's because she worries and I know that you're probably reading this mum, so if you are and although I probably told you this the other week, I just need you to know I'm trying and I will get there. Find reassurance in the fact that I haven't given up and I won't give up- because I know that wouldn't get me very far. And I would do anything for you and I'm working super hard on getting back on track- for both of us, because I don't want you to worry about me, and trust me I don't want any damage to happen to me either. <3

I salute my parents for putting up with all my struggles with diabetes, I know it's super hard for them to know that I'm not doing great with my diabetes care at the moment. And I know they feel helpless but right now the best thing to do is just be there for me, because it's not that I don't want their help- it's just I feel that at the moment nothing is really working for me and I will get back into control because I've done it before and I've done it again. And in all honesty what I really need right now (and always will! ha ha) is my parents love and support because without them I have no idea what I would do- and in doing just that they are helping me in more ways than they know...!

I'm struggling to see the light at the end of the tunnel right now, I've been through rough patches with my diabetes before, but it just seems like an even worse one right now- enhanced by my HbA1c being high too. My consultant suggested going to see the psychologist to see if they can help me, but I am sort of against the idea because I just don't think it would do me much good because they are there to help you find more motivation, except I have the desire to do it and get better at my diabetes care but I just can't seem to find the routine...I mean I am feeling a bit discouraged but I feel like that's something I can get over on my own...and  I don't want to go to an appointment and find that I just don't open up at all because that would be a total waste of time. I don't know, I have a couple more weeks to make up my mind, I might warm to the idea, at least I can say that I've tried then.

That's where I'm at for now. I know I'll get there and I know I can do it, I have faith in myself that I can do this. And I know that I'm strong enough to do this, but at the moment I don't feel so strong.