CF Related Diabetes… I feel I’ve been let down

[Jen0623]

Hello, I’m fairly new to this forum and I just want to let my frustration out as I can’t find the right answers. It’s difficult to explain it here goes…

I’ve been diabetic for 31 years. I have Cystic Fibrosis and have had a liver and kidney transplant during my life. For the last 4 years I’ve been isolated due to Covid and when I’m ‘came out’ of my bubble a lot of things have changed.

I had a really bad experience with a Hypo last August and I can’t seem to shake myself out of this ‘burnout’.

I’ve never had a ‘diabetes team’ and now that I do I don’t know how to handle it. They’re saying ‘eat what you want…’ but ‘keep in range’.

Doctors think I’m doing well.. but I feel it’s all a lie. I don’t feel like eating, nor am I eating as much as I should. I get scared when I’m ‘in range’ cause i know it doesn’t stay like that for long.

My Cystic Fibrosis side needs me to eat carbs to keep my weight up but at this time I have no motivation to eat. I’ve lost a lot of weight and I don’t know how to gain it back. They’re also saying ‘stay in range’ and my weight will ‘return’ naturally.

In the 31 years since I’ve been a diabetic I’ve never gained weight. I was always a constant 47kg. When I had my kidney transplant a miracle happened and I gained 20kgs. I was at 69kg at my best. My dream body… but since coming out of Covid and trying to adapt I’ve lost it all.

I’m now 56kg.. at best. All my confidence. All my hard work. My way of living, everything seems to have disappeared.

I don’t know what to do. I’m trying to find a CF Related Diabetes person to speak/chat to but I can’t find anyone. Does anyone know if there’s one on this forum?

 

[Leadinglights]

Hello, I’m fairly new to this forum and I just want to let my frustration out as I can’t find the right answers. It’s difficult to explain it here goes…

I’ve been diabetic for 31 years. I have Cystic Fibrosis and have had a liver and kidney transplant during my life. For the last 4 years I’ve been isolated due to Covid and when I’m ‘came out’ of my bubble a lot of things have changed.

I had a really bad experience with a Hypo last August and I can’t seem to shake myself out of this ‘burnout’.

I’ve never had a ‘diabetes team’ and now that I do I don’t know how to handle it. They’re saying ‘eat what you want…’ but ‘keep in range’.

Doctors think I’m doing well.. but I feel it’s all a lie. I don’t feel like eating, nor am I eating as much as I should. I get scared when I’m ‘in range’ cause i know it doesn’t stay like that for long.

My Cystic Fibrosis side needs me to eat carbs to keep my weight up but at this time I have no motivation to eat. I’ve lost a lot of weight and I don’t know how to gain it back. They’re also saying ‘stay in range’ and my weight will ‘return’ naturally.

In the 31 years since I’ve been a diabetic I’ve never gained weight. I was always a constant 47kg. When I had my kidney transplant a miracle happened and I gained 20kgs. I was at 69kg at my best. My dream body… but since coming out of Covid and trying to adapt I’ve lost it all.

I’m now 56kg.. at best. All my confidence. All my hard work. My way of living, everything seems to have disappeared.

I don’t know what to do. I’m trying to find a CF Related Diabetes person to speak/chat to but I can’t find anyone. Does anyone know if there’s one on this forum?

I am sorry you are struggling so much, there have been a couple of people in the past but I don't think they have been here in a while.
However if you use the search tab some of those past posts may help you. Otherwise the DUK helpline may be able to advice you how to press for better support if you contact them tomorrow.

 

[grovesy]

We have had some post over the years, but I don't remember any who regularly post.

 

[Inka]

I’ve suffered burnout and hypo anxiety @Jen0623 For burnout, I found lowering my expectations helped. I relaxed my control ever so slightly, and that relieved some of the pressure. A small change but a big effect. I also chose easy meal options where I knew the carbs so there was no counting or worry. I took one day at a time; made sure to not dwell on ‘bad’ results; and reminded myself that I’m not alone ( this forum is great for that).

What helped enormously was getting the Dexcom G7. This has helped me become less stressed, less burnt out, and makes it easier to eat more.

I found that (the G7) was the only real help my team could give as no-one understands burnout and/or hypo fears unless they’ve had them. Remember - you’re in control. You make the decisions not your team. Eat as much as you can for your burnout; pace yourself; choose a target range that works for you; and ask for the G7 if you can.

 

[everydayupsanddowns]

Welcome to the forum @Jen0623

Sorry to hear how difficult things have been for you over the last few years, and how you feel let down by your HCPs.

Diabetes burnout and diabetes distress are (thankfully) gaining more and more recognition as the serious conditions they are - but it’s a gradual and incremental process, and some Drs and clinics are more on the ball than others.

Can you put a finger on what’s behind your low appetite? Do you think it’s related to anxiety about how your glucose levels might react to a high-carb meal? Have you struggled with appetite or food in the past? Do you think the complexity of CF and diabetes together are sucking the enjoyment out of it?

How does your cystic fibrosis cope with fats? Could you increase the available energy in meals by increasing fat content?

Might it help to call the Diabetes UK helpline next week (Mon-Fri 9-6 on 0345 123 2399) and chat things through with one of the friendly helpline advisers?

 

[Proud to be erratic]

Hello, I’m fairly new to this forum and I just want to let my frustration out as I can’t find the right answers. It’s difficult to explain it here goes…

I’ve been diabetic for 31 years. I have Cystic Fibrosis and have had a liver and kidney transplant during my life. For the last 4 years I’ve been isolated due to Covid and when I’m ‘came out’ of my bubble a lot of things have changed.

I had a really bad experience with a Hypo last August and I can’t seem to shake myself out of this ‘burnout’.

I’ve never had a ‘diabetes team’ and now that I do I don’t know how to handle it. They’re saying ‘eat what you want…’ but ‘keep in range’.

Doctors think I’m doing well.. but I feel it’s all a lie. I don’t feel like eating, nor am I eating as much as I should. I get scared when I’m ‘in range’ cause i know it doesn’t stay like that for long.

My Cystic Fibrosis side needs me to eat carbs to keep my weight up but at this time I have no motivation to eat. I’ve lost a lot of weight and I don’t know how to gain it back. They’re also saying ‘stay in range’ and my weight will ‘return’ naturally.

In the 31 years since I’ve been a diabetic I’ve never gained weight. I was always a constant 47kg. When I had my kidney transplant a miracle happened and I gained 20kgs. I was at 69kg at my best. My dream body… but since coming out of Covid and trying to adapt I’ve lost it all.

I’m now 56kg.. at best. All my confidence. All my hard work. My way of living, everything seems to have disappeared.

I don’t know what to do. I’m trying to find a CF Related Diabetes person to speak/chat to but I can’t find anyone. Does anyone know if there’s one on this forum?

Hello @Jen0623,

I can't help you about diabetes as a consequence of CF, sorry. I agree with @Inka that the Dexcom G7 provided for me a much greater confidence in my BG readings and I've reached a point that (apart from an initial calibration check a few hours after activating a new sensor) I no longer need to do any kind of reassurance finger prick test to clarify where my BG is at. I can and do trust my G7 completely; and this has made a huge improvement in the reduction of my stress levels while deciding what bolus to take. This is not just about that accuracy dependability but the clear spin-off is that bolus decision making is so much quicker AND that in turn cascades onto the advantage that I can make small bolus corrections with a readiness to do more corrections if I need to.

I am wondering how long you have been using any CGM and how much YOU trust your Libre readings? Because, if your CGM is an underlying fundamental cause of your uncertainty about what is going on with your D and thus what is happening with your BG minute by minute and hour by hour - then it is not surprising that you feel burnt out, it is not surprising that a bad hypo then erodes any confidence (and into the future) and not so surprising you end up being scared even while still in range.

If, as I'm surmising that you don't trust your Libre, you should do your very most to convince your D team that you are doing your best, that your best may make it look as though you are doing OK, but the "price of that apparent looking OK" is wholly unaffordable and severely detrimental to you having any sort of quality of life.

There are several slightly different sorts of CGM available from the NHS and the big thing for you, as I see it, is to find a CGM that is appropriate for YOU @Jen0623 and which can support you not just in the simple sense of providing a display of your changing BG, but providing you support that can keep you reassured. If that means trying the G7, which is more expensive than Libre 2, the extra cost to the NHS is really not significant in relation to the potential extra cost in nursing and medical hospital commitment for you. Or potential costs to Social Services because you can't work, or perhaps in the future can't depend on the long term housing support of your parents. The medical justification may be a clinical matter, but there is also a potentially strong business case.

Incidentally, I do sympathise with having a bad hypo and then feeling insecure. My own BG can become worryingly unsettling and last night I had a modest hypo which became a real challenge for me. I think we all have these moments, except last night the moment went on for a couple of hours altogether. Not particularly low, just over an hour at 3.2, no matter what high GI glucose I took I couldn't get a response. I had full hypo symptoms. Periodic FPs confirmed that I was apparently stuck in hypo territory. The premises we were in were closing and a 10 min walk back felt daunting, with no alternative. But even though this was happening and my wife was getting anxious about what we could do, I did trust my G7 and knew if I kept calm eventually there would be some recovery. Which there finally was, along with the inevitable mild hyper backlash from the surfeit of juice and other carbs I'd taken. Much later a small correction was needed to get me through the night at a reasonable level.

This morning I tried some detective work to see if there was a lesson that could be learnt, but I really couldn't explain why that lengthy hypo had occurred. Like your latest post says at the start, no obvious right answers and seems barely credible to explain (except the G7 graph provides some evidence).