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Tuesday 26 August 2014
Hope
The sky on a sunny day is something I find great joy in looking at. I could watch it for hours, I love watching the clouds go by, spotting birds fly over, and seeing trees flutter in the wind in the corner of my eye. I enjoy the smell in the air too, it smells fresh and it just makes me feel so relaxed. In looking at the sky I have no other thoughts than how beautiful it is, how fascinating it is as a part of this great big world and what doesn't exist in my thoughts while I watch the birds and aeroplanes fly above me, is diabetes. I realise that the beauty in this world has the ability to push diabetes out of my mind, even if it's just for a moment and that tells me something. I remember, even on my darkest days with diabetes, that there is more to life than type one diabetes, my life is not consumed by this disease no matter how much I struggle with it. The sky shows me just how big the world I live in is, and just how much that diabetes shouldn't stand in my way and in it's simplicity I can try to imagine a world without diabetes and it gives me hope...hope that one day I will be looking at the sky and diabetes will be in my thoughts, but as a distant memory.
Overwhelming
Without sounding too negative, I can't help but think sometimes of how overwhelming a life with type one diabetes can be. It is constant, it is 24/7 and sometimes quite intensely so. In the midst of my struggles with type one, I've been trying to figure out ways to get myself back on track, and the planned admission, so far, has been one of the only things that have actually worked, and lasted for longer than about a week. It gave me a sense of routine, it reminded me of what it means to be in control over my diabetes and being back in control has reminded me of the intense amount of effort that goes into staying healthy as a type one diabetic. I am not saying this as a means to fall out of routine again, because that's not what's happening...I'm just merely reflecting on all that it is to live a life with type one. I'm 17 years old, I shouldn't be worrying about any of this, but I am, and the fact that I cannot live without the vials of insulin in the fridge is a scary thought sometimes. My body does not have the ability to sustain life on it's own, and if I did not have my insulin pump or insulin injections I would not be here. But even insulin is a hazard to some extent, if I take too much my body goes spiralling into low blood sugar, too little and it goes the opposite way. The word 'caution' springs to mind, I have to have my eyes open to the effects of this disease 24/7, I have to keep watch on my blood sugars, on how much carbohydrate I'm eating, how I'm feeling, everything- or I would get unwell. That is why I cannot have a break. That is why routine with type one diabetes is so intense. That is why it overwhelms me when I think about it.
It's not just the routine that overwhelms me though. It's also the possibility of what this disease can do to my body. I'll tell you what I am most afraid of out of all the possible complications...blindness. I know if I say it people would probably think "don't be negative" or "that won't happen to you" or "just look after it and you'll be fine" but it's hard to "just" look after it no matter how afraid I am of what could happen if I don't, and I'm not going to paint a pretty picture of flowers and positivity because sometimes it just isn't that, sometimes it's hard to see the light no matter how hard you try. It's the scariest one for me because to see everyone around me, and the sky and the trees and the sun when it shines is a privilege...I take great joy in seeing the world around me and to think that type one diabetes has the possibility to take that away from me is something I can't quite fathom, because on one hand I have hope it will never happen, but on the other hand I am very aware that it could. I am afraid, but for some reason that has never been enough to kick start my motivation to get back into control again. However, what is important is that I'm getting back into control and to look ahead to a positive future with type one is the way to go, although I have the right to rant when I want to!
Everyday I am reminded that what I live with is not to be downplayed, the potential type one diabetes has is not to be brushed aside. I am living with a disease that works so hard against me. But the fact that I still smile despite type one tells me that I'm winning to some extent, even if I'm not fully back in control of it yet, but I've worked pretty damn hard to get to where I am with it. So I'll keep pushing on because I have so much love and support around me, and the drive to do this, because I know that I can, no matter how overwhelming it gets sometimes.
It's not just the routine that overwhelms me though. It's also the possibility of what this disease can do to my body. I'll tell you what I am most afraid of out of all the possible complications...blindness. I know if I say it people would probably think "don't be negative" or "that won't happen to you" or "just look after it and you'll be fine" but it's hard to "just" look after it no matter how afraid I am of what could happen if I don't, and I'm not going to paint a pretty picture of flowers and positivity because sometimes it just isn't that, sometimes it's hard to see the light no matter how hard you try. It's the scariest one for me because to see everyone around me, and the sky and the trees and the sun when it shines is a privilege...I take great joy in seeing the world around me and to think that type one diabetes has the possibility to take that away from me is something I can't quite fathom, because on one hand I have hope it will never happen, but on the other hand I am very aware that it could. I am afraid, but for some reason that has never been enough to kick start my motivation to get back into control again. However, what is important is that I'm getting back into control and to look ahead to a positive future with type one is the way to go, although I have the right to rant when I want to!
Everyday I am reminded that what I live with is not to be downplayed, the potential type one diabetes has is not to be brushed aside. I am living with a disease that works so hard against me. But the fact that I still smile despite type one tells me that I'm winning to some extent, even if I'm not fully back in control of it yet, but I've worked pretty damn hard to get to where I am with it. So I'll keep pushing on because I have so much love and support around me, and the drive to do this, because I know that I can, no matter how overwhelming it gets sometimes.
Sunday 17 August 2014
Planned admission: overview
On July 21st I was admitted to hospital for 2 weeks. I totally fell out of routine with my diabetes, I didn't test my blood sugar very much and bolusing for food was a rarity. The most I did was change my infusion site, and when I was done I would prime it with a large amount of insulin and then continue with my day, it was unlikely that I would touch my insulin pump again that day- except for the odd bolus here and there. I relied very much on my basal rates to keep my blood sugar under some sort of control. I wouldn't say I was depressed or in denial about diabetes, I just found it easier to ignore it...being in hospital reminded me of all the feelings and the thoughts that looking after diabetes entailed and as I think back I reckon I just didn't want them. But not in an "in denial" way, just a "I don't really want to deal with this" I don't know how to explain it, I gave up to a certain extent. I had let diabetes go so much that even when I tried to correct my blood sugars it wouldn't work so I didn't try anymore, then I didn't want to test my blood sugars because I knew that they would be high, and so my body got used to high blood sugars and I continued living in a state of high blood sugar and I could find no motivation to fix it. I have lost motivation many times before and somehow managed to pick myself back up and bring myself back from the brink of a HbA1c any higher than 12; but they were short lived. They were mini bursts of motivation that I couldn't find the ability to keep up. But with a HbA1c of over 14% it soon became clear to me that I wasn't going to be able to turn this one around on my own, despite all the support I got from my parents, family and friends I just couldn't do it, I wanted to be able to do it but I couldn't.
Admitting to needing help was a really big thing for me, I thought that if I admitted that I needed help and couldn't do this then I would look weak, I thought that it would defy everything that I have ever said about diabetes, that I would never let it get me down, and that I know I can do it, but I figured out that actually for a little while, I actually couldn't do it. Afterwards I realised that admitting to needing help was the stronger thing to do, I reminded myself that to run away and hide from my struggles with diabetes is more cowardly than saying that I can't do it. So when my consultant mentioned the admission I spoke to my parents and we all agreed that it could help me, so I went ahead with it, I decided it was time to actually do something about it because this time around I couldn't pick myself up, as much as I wanted to, I needed help that went beyond the support from my parents, family and friends, as valuable as it is.
The admission is planned and it consists of four stages. I'll give you a run down of the stages now so I don't have to get into too much detail about it later. On stage 1 you're put on an insulin drip for 48-72 hours and your blood sugar is tested every hour, the drip is a machine called a 'sliding scale' and so they entered in my basal rates into the sliding scale and when I ate they doubled the rate. This helped them figure out how much insulin I need and figure out new basal rates, so that on stage 2 they can enter them into my insulin pump and see if they work. On stage 2 I was put back onto my insulin pump, but the nurses did everything for me, so they bolused for me when I ate and for corrections, and the blood sugar checks were every couple of hours. Having the nurses do everything for the first two stages was so I could have a break from diabetes, so then the last two stages were about slowly getting me back into control of my diabetes. Stage 3 was I did boluses and corrections for myself but with supervision from the nurses, they still had to do my blood sugar checks because it's "hospital rules" or something, that whilst you're in hospital they have to use their own blood meter. Then stage four was me doing everything on my own and the nurses didn't have to watch over what I was doing, all they had to do was write down how much insulin my pump had given me, the insulin that was active in my pump, if any, and how many carbohydrates I'm eating when I ate. Stage four also meant that I could go out off of the ward, I could during stage 3 too. But in stage four I could actually go home for a couple of days.
Each stage brought a new scenario, everyday was different for my blood sugars and my team realised
that my insulin requirements actually change everyday. Some days I need more insulin than on other days. Even though at times during my stay I thought the boredom was going to kill me, there were
some eventful moments.
The day I was admitted was Monday 21st July, I went up to the hospital with my twin sister and our friend, Eleanor because my parents were working and so they couldn't come. The nurses were waiting for someone to be discharged from the main ward when I arrived and so I was put in the daycare ward for what I thought would only be a couple of hours but it ended up being for the whole day and night and for most of the next day. I had quite a peaceful time there though because the people who came onto that part of the ward were only there for a couple of hours for infusions and so they went home and at night it was just me on the ward. It felt a bit lonely at first but it was okay, the fact that i had a bed by the window kept me sane because the view of London at night from the 12th floor was incredible. On Monday night I was awoken at 4am by the nurse because I had somehow managed to pull my cannula out while I was sleeping, and so I had to have a new one put in, which wasn't ideal at 4am. I didn't sleep very well at all the first night especially.
On Tuesday morning I saw my consultant and we just talked about how things were going. That same day I was moved from the daycare ward to the main ward, but before I was moved some volunteers were coming round. They had purple tops on that said "fun team" on the front with rainbow! They just came round to have a chat really, we spoke for a good while until it was time for me to be moved to the main ward. Earlier on that day my mum and sister also came to visit so that was great to have some company. There were three other girls on the bay with me, all in for different things, I got speaking to the girl who was opposite me and we actually ended up having a really good laugh together, we would go and make tea in the evenings and once we went out for a walk to get some fresh air, and one night we stayed awake chatting until about 1:30am. She went home just less than a week before me and so I got very bored when she left but we exchanged Instagram usernames and are still chatting now, more than 2 weeks later.
Wednesday rolled around and in the morning I went to have a shower and it was absolutely freezing!
I had to rush anyway because I could only be disconnected from the drip for half an hour but still, it was so cold! But thankfully the freezing water was just a one off, the showers that followed after
were okay, the water temperature behaved itself. It felt great to be disconnected from the drip even if
it was just for half an hour. My twin sister, Lauren and my friend Eleanor came to visit on Wednesday, we had a laugh about photos of each other's faces that were edited to look distorted and it looked hilarious, then we went to the rec room to play the Nintendo and we made some loom bands! That evening I was disconnected from the drip and put back onto my pump and it felt so good to be free from the drip, no more feeling restricted from the cannula or having to drag the pole around with me wherever I went. On Thursday morning I saw my consultant again, and I was officially on stage 2 of my admission and the cannula could be fully removed. My mum came to visit me too and we made cakes in the rec room!
Saturday. My mum, dad and sister all came to see me that evening- not much had really gone on during the day on friday if I remember rightly, so it was lovely to see my family not just because I was bored and wanted their company but because I missed my parents and missed being at home with them. On Saturday morning the youth worker brought her little dog in! It was so cute and calm. I can't remember what day it was, it may have been before Saturday or after...but one night during stage 2 was quite...eventful. We put it down to cannula issues but for some reason my blood sugar didn't want to come down that night, they shot right up into the 20's and they didn't want to budge. I changed my cannula and the nurses said if my blood sugars don't come down then they would have to use the syringe to correct my blood sugars, so at about 3am I was woken up so they could do a syringe injection, it kind of hurt a little bit but being half asleep I didn't really care too much, then at some point around 4am I had to have another injection if insulin because my blood sugars still didn't budge. It was crazy because I was having all that insulin from my pump, plus two syringe injections and my blood sugars just weren't coming down. The next morning we were on hypo watch because I
had so much insulin during the night and they were concerned it would catch up on me during the day! It didn't.
Not much happened on Sunday through Monday...On Tuesday I saw my consultant again and was
officially on stage 3! That meant I could do everything on my pump for myself now, whereas before
the nurses would have to bolus for me on my pump. I really liked being back in control of my pump and by this point I could really feel my sense of routine coming back, I knew my blood sugar was being tested every two hours and actually expected it and went to get the nurse when it was time to test my blood sugars and she wasn't around to do it. On Tuesday evening my uncle came to visit me, and because I was on stage three I was allowed off of the ward in between meal times so he took me out for a walk and we had tea at pret! It was depressing having to go back to the ward and I was really fed up by then but I had to keep reminding myself that what I'm doing is for the best and I just had to keep pushing on because it was all worth it in the end. On the days that I felt especially down I said to myself "down but not out". That Wednesday wasn't very eventful either, apart from young peoples group that was going on in the rec room and we played jenga. On Thursday I took part in the tree of life project again, it was on the 12th floor of the hospital anyway so it was quite handy, I just had to walk down the corridor! I saw my consultant too, and was officially on stage 4! It was exciting it finally be able to be in control of my own diabetes again and I definitely felt ready to do it all on my own again. On Friday evening my friend Chris came to see me and we played with the youth workers' other puppy in the rec room and we also went for a walk.
Saturday morning, the 2nd of August, I got to go home! A lot of people said to me when I told them I was being admitted, about how I won't be in my natural settings and stuff and how that would probably impact it, but the point of stage 4 was so you can see how you get on back at home and see if you can keep up the routine. I went back to the hospital on Monday morning and because the weekend went so well they didn't have to change anything and so I could go back home! I had to go back on Wednesday morning for a review and to be discharged but then I was free from the hospital! I completed all four stages in 2 weeks and I'm feeling proud of myself. On Wednesday 6th august I was officials discharged and it felt great.
The admission was tough emotionally and physically and there was a lot of tweaking of my basal rates and lots of blood sugar checking but it was all worth it. At times I wanted to leave, I wanted to go back to how things were before because before I didn't experience so much frustration, but I knew I had to keep pushing on. I had two low blood sugars during the time that I was there, one during stage one and one during stage three, the first hypo definitely felt worse than the second one because it was the first hypo I had in a long time. It was an eventful admission at times and I missed my parents and family and just wanted to go home but I'm glad I did it. I'm glad I agreed to do it because if I didn't I reckon I would still be living with blood sugars over 15 24/7 and that's not a good way to be, it feels good to be back in control and to have a sense of routine.
I go to clinic on the 21st and I hope I can continue staying in control.
P.s I may or may not have got the days muddled up but that's because I can't remember some of three days that certain things happened on, it's been about eleven days since being discharged. I didn't mention everything either I just wrote this as a mini summary of my stay. My basal rates work really well now too by the way!
-Ellie
Admitting to needing help was a really big thing for me, I thought that if I admitted that I needed help and couldn't do this then I would look weak, I thought that it would defy everything that I have ever said about diabetes, that I would never let it get me down, and that I know I can do it, but I figured out that actually for a little while, I actually couldn't do it. Afterwards I realised that admitting to needing help was the stronger thing to do, I reminded myself that to run away and hide from my struggles with diabetes is more cowardly than saying that I can't do it. So when my consultant mentioned the admission I spoke to my parents and we all agreed that it could help me, so I went ahead with it, I decided it was time to actually do something about it because this time around I couldn't pick myself up, as much as I wanted to, I needed help that went beyond the support from my parents, family and friends, as valuable as it is.
The admission is planned and it consists of four stages. I'll give you a run down of the stages now so I don't have to get into too much detail about it later. On stage 1 you're put on an insulin drip for 48-72 hours and your blood sugar is tested every hour, the drip is a machine called a 'sliding scale' and so they entered in my basal rates into the sliding scale and when I ate they doubled the rate. This helped them figure out how much insulin I need and figure out new basal rates, so that on stage 2 they can enter them into my insulin pump and see if they work. On stage 2 I was put back onto my insulin pump, but the nurses did everything for me, so they bolused for me when I ate and for corrections, and the blood sugar checks were every couple of hours. Having the nurses do everything for the first two stages was so I could have a break from diabetes, so then the last two stages were about slowly getting me back into control of my diabetes. Stage 3 was I did boluses and corrections for myself but with supervision from the nurses, they still had to do my blood sugar checks because it's "hospital rules" or something, that whilst you're in hospital they have to use their own blood meter. Then stage four was me doing everything on my own and the nurses didn't have to watch over what I was doing, all they had to do was write down how much insulin my pump had given me, the insulin that was active in my pump, if any, and how many carbohydrates I'm eating when I ate. Stage four also meant that I could go out off of the ward, I could during stage 3 too. But in stage four I could actually go home for a couple of days.
Each stage brought a new scenario, everyday was different for my blood sugars and my team realised
that my insulin requirements actually change everyday. Some days I need more insulin than on other days. Even though at times during my stay I thought the boredom was going to kill me, there were
some eventful moments.
The day I was admitted was Monday 21st July, I went up to the hospital with my twin sister and our friend, Eleanor because my parents were working and so they couldn't come. The nurses were waiting for someone to be discharged from the main ward when I arrived and so I was put in the daycare ward for what I thought would only be a couple of hours but it ended up being for the whole day and night and for most of the next day. I had quite a peaceful time there though because the people who came onto that part of the ward were only there for a couple of hours for infusions and so they went home and at night it was just me on the ward. It felt a bit lonely at first but it was okay, the fact that i had a bed by the window kept me sane because the view of London at night from the 12th floor was incredible. On Monday night I was awoken at 4am by the nurse because I had somehow managed to pull my cannula out while I was sleeping, and so I had to have a new one put in, which wasn't ideal at 4am. I didn't sleep very well at all the first night especially.
On Tuesday morning I saw my consultant and we just talked about how things were going. That same day I was moved from the daycare ward to the main ward, but before I was moved some volunteers were coming round. They had purple tops on that said "fun team" on the front with rainbow! They just came round to have a chat really, we spoke for a good while until it was time for me to be moved to the main ward. Earlier on that day my mum and sister also came to visit so that was great to have some company. There were three other girls on the bay with me, all in for different things, I got speaking to the girl who was opposite me and we actually ended up having a really good laugh together, we would go and make tea in the evenings and once we went out for a walk to get some fresh air, and one night we stayed awake chatting until about 1:30am. She went home just less than a week before me and so I got very bored when she left but we exchanged Instagram usernames and are still chatting now, more than 2 weeks later.
Wednesday rolled around and in the morning I went to have a shower and it was absolutely freezing!
I had to rush anyway because I could only be disconnected from the drip for half an hour but still, it was so cold! But thankfully the freezing water was just a one off, the showers that followed after
were okay, the water temperature behaved itself. It felt great to be disconnected from the drip even if
it was just for half an hour. My twin sister, Lauren and my friend Eleanor came to visit on Wednesday, we had a laugh about photos of each other's faces that were edited to look distorted and it looked hilarious, then we went to the rec room to play the Nintendo and we made some loom bands! That evening I was disconnected from the drip and put back onto my pump and it felt so good to be free from the drip, no more feeling restricted from the cannula or having to drag the pole around with me wherever I went. On Thursday morning I saw my consultant again, and I was officially on stage 2 of my admission and the cannula could be fully removed. My mum came to visit me too and we made cakes in the rec room!
Saturday. My mum, dad and sister all came to see me that evening- not much had really gone on during the day on friday if I remember rightly, so it was lovely to see my family not just because I was bored and wanted their company but because I missed my parents and missed being at home with them. On Saturday morning the youth worker brought her little dog in! It was so cute and calm. I can't remember what day it was, it may have been before Saturday or after...but one night during stage 2 was quite...eventful. We put it down to cannula issues but for some reason my blood sugar didn't want to come down that night, they shot right up into the 20's and they didn't want to budge. I changed my cannula and the nurses said if my blood sugars don't come down then they would have to use the syringe to correct my blood sugars, so at about 3am I was woken up so they could do a syringe injection, it kind of hurt a little bit but being half asleep I didn't really care too much, then at some point around 4am I had to have another injection if insulin because my blood sugars still didn't budge. It was crazy because I was having all that insulin from my pump, plus two syringe injections and my blood sugars just weren't coming down. The next morning we were on hypo watch because I
had so much insulin during the night and they were concerned it would catch up on me during the day! It didn't.
Not much happened on Sunday through Monday...On Tuesday I saw my consultant again and was
officially on stage 3! That meant I could do everything on my pump for myself now, whereas before
the nurses would have to bolus for me on my pump. I really liked being back in control of my pump and by this point I could really feel my sense of routine coming back, I knew my blood sugar was being tested every two hours and actually expected it and went to get the nurse when it was time to test my blood sugars and she wasn't around to do it. On Tuesday evening my uncle came to visit me, and because I was on stage three I was allowed off of the ward in between meal times so he took me out for a walk and we had tea at pret! It was depressing having to go back to the ward and I was really fed up by then but I had to keep reminding myself that what I'm doing is for the best and I just had to keep pushing on because it was all worth it in the end. On the days that I felt especially down I said to myself "down but not out". That Wednesday wasn't very eventful either, apart from young peoples group that was going on in the rec room and we played jenga. On Thursday I took part in the tree of life project again, it was on the 12th floor of the hospital anyway so it was quite handy, I just had to walk down the corridor! I saw my consultant too, and was officially on stage 4! It was exciting it finally be able to be in control of my own diabetes again and I definitely felt ready to do it all on my own again. On Friday evening my friend Chris came to see me and we played with the youth workers' other puppy in the rec room and we also went for a walk.
Saturday morning, the 2nd of August, I got to go home! A lot of people said to me when I told them I was being admitted, about how I won't be in my natural settings and stuff and how that would probably impact it, but the point of stage 4 was so you can see how you get on back at home and see if you can keep up the routine. I went back to the hospital on Monday morning and because the weekend went so well they didn't have to change anything and so I could go back home! I had to go back on Wednesday morning for a review and to be discharged but then I was free from the hospital! I completed all four stages in 2 weeks and I'm feeling proud of myself. On Wednesday 6th august I was officials discharged and it felt great.
The admission was tough emotionally and physically and there was a lot of tweaking of my basal rates and lots of blood sugar checking but it was all worth it. At times I wanted to leave, I wanted to go back to how things were before because before I didn't experience so much frustration, but I knew I had to keep pushing on. I had two low blood sugars during the time that I was there, one during stage one and one during stage three, the first hypo definitely felt worse than the second one because it was the first hypo I had in a long time. It was an eventful admission at times and I missed my parents and family and just wanted to go home but I'm glad I did it. I'm glad I agreed to do it because if I didn't I reckon I would still be living with blood sugars over 15 24/7 and that's not a good way to be, it feels good to be back in control and to have a sense of routine.
I go to clinic on the 21st and I hope I can continue staying in control.
P.s I may or may not have got the days muddled up but that's because I can't remember some of three days that certain things happened on, it's been about eleven days since being discharged. I didn't mention everything either I just wrote this as a mini summary of my stay. My basal rates work really well now too by the way!
-Ellie
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