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Type 1 Diabetes
explaining what it's really like to live with Type 1
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<blockquote data-quote="MagicFirefly" data-source="post: 1780490" data-attributes="member: 12654"><p><span style="font-family: 'Verdana'">I have always just got on with it. Struggled and gotten through highs and lows – quite literally and although my family have been supportive, there was something lonely about it. They didn’t know what it was like to wake up in the middle of the night, sweating and feeling the dire need for something sweet but not really being able to comprehend how I was going to do that when my body did not seem to want to move the way it should. They didn’t understand the bitter tiredness after spending the day with an undying thirst, constantly running back and forth to urinate and administering injections that did not seem to be working. But they did offer words of encouragement, ran to get Lucozade when I needed it and my dear mother who was always willing to spend the night in accident and emergency when I was too sick to stay at home any more. Despite having a friend who also has type 1 diabetes, we never really talked about the nitty gritty of being a slave to finger pricks and injections. We were both children when diagnosed and in our early 20’s by the time we met properly. </span></p><p><span style="font-family: 'Verdana'"></span></p><p><span style="font-family: 'Verdana'">Previously, I have held issue with online forums and chat rooms. Previous experience has shown me that there are far too many judgemental people out there. However, I have recently joined some Facebook pages, one just for women with type 1 diabetes, one local page, one local specifically for those using insulin pumps and one for type 1 diabetes in general, including parents or carers of someone with type 1 and now here, despite signing up 3 years ago, I tend to dip in and out. I find myself reading posts with interest regarding all sorts of things. Some asking for advice, others offering advice, some just wanting to vent their frustration about how unfair diabetes is. I even found myself writing a post or two of my own, particularly when I was really fed up and wanted to share with someone who would just understand without me having to explain anything. </span></p><p><span style="font-family: 'Verdana'"></span></p><p><span style="font-family: 'Verdana'">I have always been the ‘sick’ one of the family. Before my diagnosis, I suffered with many chest, kidney or ear infections which had me at the doctors more often than I cared for. And then I was diagnosed, placed under the care of the endocrinologist team. In addition, I have also been under the care of gastro, orthopaedics, ophthalmology, dermatology, cardiology and immunology. This has resulted in cumulative hours sat in hospital waiting rooms, x-rays, scans and other investigations. How related to the diabetes each of these are, I do not know. Some are ongoing. Sometimes it’s not just the diabetes, but everything it affects. Being told, ‘It’s your diabetes’, like it’s some kind of explain all. Having some patronising ophthalmologist tell me, ‘You have to keep your sugar under control’ like I wasn’t already aware of that and after I told him my HbA1c has been on a downward trend (which personally I’m pretty pleased about). </span></p><p><span style="font-family: 'Verdana'"></span></p><p><span style="font-family: 'Verdana'">I am 34 and had more hospital admissions than some in their 70’s or 80’s. Admittedly less so in the last 8years due largely to the amazing little pump as my external pancreas. Trying to explain to someone that diabetes effects everything, that sometimes you’re just too tired to go out, that you get frustrated that you’re at more risk of things like frozen shoulder or trigger finger. But it’s not even the ignorant people who just don’t understand and think you’re being a drama queen who are the worst. The worst is the judgemental people. The ones who give you disapproving looks whilst you’re eating your lunch. The ones who make comments about losing limbs because you had a little chocolate whilst running around on your feet on a ward hotter than Spain in the height of summer for 12.5 hours. </span></p><p><span style="font-family: 'Verdana'"></span></p><p><span style="font-family: 'Verdana'">We battle ignorance, exhaustion, frustration, judgement, despair and pain from testing and injecting. Yet we live for the triumphs of getting a good reading after bolusing for a meal, waking up with a reading that puts you in a good mood for the rest of the day, because lets face it, anything too low or too high can result in headaches, tiredness, grumpiness, and general feelings of deflation. </span></p><p><span style="font-family: 'Verdana'"></span></p><p><span style="font-family: 'Verdana'">We didn’t ask for this. We didn’t do something that we knew would cause this. Our pancreas just stopped working properly. </span></p><p><span style="font-family: 'Verdana'"></span></p></blockquote><p></p>
[QUOTE="MagicFirefly, post: 1780490, member: 12654"] [FONT=Verdana]I have always just got on with it. Struggled and gotten through highs and lows – quite literally and although my family have been supportive, there was something lonely about it. They didn’t know what it was like to wake up in the middle of the night, sweating and feeling the dire need for something sweet but not really being able to comprehend how I was going to do that when my body did not seem to want to move the way it should. They didn’t understand the bitter tiredness after spending the day with an undying thirst, constantly running back and forth to urinate and administering injections that did not seem to be working. But they did offer words of encouragement, ran to get Lucozade when I needed it and my dear mother who was always willing to spend the night in accident and emergency when I was too sick to stay at home any more. Despite having a friend who also has type 1 diabetes, we never really talked about the nitty gritty of being a slave to finger pricks and injections. We were both children when diagnosed and in our early 20’s by the time we met properly. Previously, I have held issue with online forums and chat rooms. Previous experience has shown me that there are far too many judgemental people out there. However, I have recently joined some Facebook pages, one just for women with type 1 diabetes, one local page, one local specifically for those using insulin pumps and one for type 1 diabetes in general, including parents or carers of someone with type 1 and now here, despite signing up 3 years ago, I tend to dip in and out. I find myself reading posts with interest regarding all sorts of things. Some asking for advice, others offering advice, some just wanting to vent their frustration about how unfair diabetes is. I even found myself writing a post or two of my own, particularly when I was really fed up and wanted to share with someone who would just understand without me having to explain anything. I have always been the ‘sick’ one of the family. Before my diagnosis, I suffered with many chest, kidney or ear infections which had me at the doctors more often than I cared for. And then I was diagnosed, placed under the care of the endocrinologist team. In addition, I have also been under the care of gastro, orthopaedics, ophthalmology, dermatology, cardiology and immunology. This has resulted in cumulative hours sat in hospital waiting rooms, x-rays, scans and other investigations. How related to the diabetes each of these are, I do not know. Some are ongoing. Sometimes it’s not just the diabetes, but everything it affects. Being told, ‘It’s your diabetes’, like it’s some kind of explain all. Having some patronising ophthalmologist tell me, ‘You have to keep your sugar under control’ like I wasn’t already aware of that and after I told him my HbA1c has been on a downward trend (which personally I’m pretty pleased about). I am 34 and had more hospital admissions than some in their 70’s or 80’s. Admittedly less so in the last 8years due largely to the amazing little pump as my external pancreas. Trying to explain to someone that diabetes effects everything, that sometimes you’re just too tired to go out, that you get frustrated that you’re at more risk of things like frozen shoulder or trigger finger. But it’s not even the ignorant people who just don’t understand and think you’re being a drama queen who are the worst. The worst is the judgemental people. The ones who give you disapproving looks whilst you’re eating your lunch. The ones who make comments about losing limbs because you had a little chocolate whilst running around on your feet on a ward hotter than Spain in the height of summer for 12.5 hours. We battle ignorance, exhaustion, frustration, judgement, despair and pain from testing and injecting. Yet we live for the triumphs of getting a good reading after bolusing for a meal, waking up with a reading that puts you in a good mood for the rest of the day, because lets face it, anything too low or too high can result in headaches, tiredness, grumpiness, and general feelings of deflation. We didn’t ask for this. We didn’t do something that we knew would cause this. Our pancreas just stopped working properly. [/FONT] [/QUOTE]
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