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I hate Diabetes!
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<blockquote data-quote="Vikki2" data-source="post: 206616" data-attributes="member: 25049"><p>Hi, I really feel for you. </p><p>I hope you don't mind me replying to you especially as my situation is SO different to yours but I did just want to ask you one thing. Firstly, just to let you know that I am the parent of a 5 yr old with T1. I know this is very different to a 26yr old but I really wanted to reply to you as I know how it can eat you up when things go wrong and being a parent I have the added guilt trip as everytime something goes wrong I blame myself. We are right now in a very good place. She is very stable and has an excellent Hba1c of 6.4. It's not always been like this. When things were really bad, i.e. we had very little control & horrible highs & lows: I just kept questioning and questioning. I would not just accept the advice we were being offered because it just wasn't making any difference. In the end I made up my mind she needed a pump and I pushed & pushed (including a front page national paper article!) and made them give us one. Now, I'm not saying that the pump is the answer to your problems but what I am saying is that the regime that she was on was just not working & so i pushed for something else, this happened to be the pump. My question to you though is this: would it be possible for you to trial a CGM for a period of time? My daughter has a pump on the NHS and a CGM which we have had to self-fund but I know that some hospitals will put patients on a CGM for a few weeks if they have poor control (depends on your postcode of course <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite3" alt=":(" title="Frown :(" loading="lazy" data-shortname=":(" /> ). We could not live without our CGM. If ever something knocks her levels (the weather/holiday excitement/growth spurt etc) then we can download the information from the CGM & can see excatly where things are going wrong. We then very quickly get back on track. Before, if things went wrong then it would take us an all-consuming month to get back on track. The Dexcom CGM we have tells us her BG levels every 5 mins. I haven't heard of any NHS board actually providing them permanently to people but like I said I have heard of people being given them for a certain period of time to try and get them more stable & to figure out what is going wrong.</p><p>Going onto the pump and getting used to the CGM has taken a huge amount of work but now we are at a stage where diabetes doesn't rule our/my daughter's life/lives. We don't hate it, we all live with it and now that my daughter is on the right regime, mostly, it's not a bother.</p><p>I hope you don't mind me, a mum, replying to you, but I wanted to let you know our experience and to let you know there was a time when we too hated diabetes but that there is light at the end of the tunnel.</p><p>All the very best</p><p>Vikki</p><p>x</p></blockquote><p></p>
[QUOTE="Vikki2, post: 206616, member: 25049"] Hi, I really feel for you. I hope you don't mind me replying to you especially as my situation is SO different to yours but I did just want to ask you one thing. Firstly, just to let you know that I am the parent of a 5 yr old with T1. I know this is very different to a 26yr old but I really wanted to reply to you as I know how it can eat you up when things go wrong and being a parent I have the added guilt trip as everytime something goes wrong I blame myself. We are right now in a very good place. She is very stable and has an excellent Hba1c of 6.4. It's not always been like this. When things were really bad, i.e. we had very little control & horrible highs & lows: I just kept questioning and questioning. I would not just accept the advice we were being offered because it just wasn't making any difference. In the end I made up my mind she needed a pump and I pushed & pushed (including a front page national paper article!) and made them give us one. Now, I'm not saying that the pump is the answer to your problems but what I am saying is that the regime that she was on was just not working & so i pushed for something else, this happened to be the pump. My question to you though is this: would it be possible for you to trial a CGM for a period of time? My daughter has a pump on the NHS and a CGM which we have had to self-fund but I know that some hospitals will put patients on a CGM for a few weeks if they have poor control (depends on your postcode of course :( ). We could not live without our CGM. If ever something knocks her levels (the weather/holiday excitement/growth spurt etc) then we can download the information from the CGM & can see excatly where things are going wrong. We then very quickly get back on track. Before, if things went wrong then it would take us an all-consuming month to get back on track. The Dexcom CGM we have tells us her BG levels every 5 mins. I haven't heard of any NHS board actually providing them permanently to people but like I said I have heard of people being given them for a certain period of time to try and get them more stable & to figure out what is going wrong. Going onto the pump and getting used to the CGM has taken a huge amount of work but now we are at a stage where diabetes doesn't rule our/my daughter's life/lives. We don't hate it, we all live with it and now that my daughter is on the right regime, mostly, it's not a bother. I hope you don't mind me, a mum, replying to you, but I wanted to let you know our experience and to let you know there was a time when we too hated diabetes but that there is light at the end of the tunnel. All the very best Vikki x [/QUOTE]
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