Type 1 Female in 20’s Diagnosed 8 years ago, struggling to juggle life.

[Honey45]

Hi,

I’ve come here because I really don’t know where else to go. Feeling so many emotions around my diabetes at the moment.

Just started a new job after working from home throughout whole pandemic/lockdowns etc.

Don’t think my mental health is in a very good place but don’t want any medications as that’s all they throw at you. Constantly trying to improve it myself but nothing really helps. Time off work helps as can do stuff I enjoy but that is not a long term fix. Feel like I have no time for myself, always either working, thinking about work, having to check bloods, give insulin etc and just feeling I’m in a cycle of low moods and constantly chasing my tail. I don’t want it to effect my work but it already is. Feel like I’m in fight or flight mode every single day. Feel like my new job is against me for having diabetes, don’t feel supported by anyone, feel like I’m making a big thing over nothing but can’t help my emotions.

I would like to become pregnant within the next few years so trying hard to tighten my control and to get an insulin pump and CGM all feels like a loosing battle as control is never good enough.

Feeling like the world is against me, which obviously is not normal and not a nice way to feel.

When I had a docs appointment I have been asked to make up the time, which I feel like I never have any of my own time, where do we stand with this? My appointments are regular and always will be. I want to become part time already starting this job but not sure if I should ask yet and not sure how to justify my reasons. My head is absolutely scrambled

Has anyone been In a similar position or felt a similar way, how did you get out of it? Any advice would be really appreciated.

Thanks!

 

[Inka]

@Honey45 Sorry you’re feeling so low. Diabetes is an extra burden when you have other stresses, and you’re definitely not making a fuss. It’s hard - it’s hard to juggle life and fit the diabetes in day after day, month after month. It can be exhausting and frustrating, and we never get a day off from it.

First thing - I think you should be allowed time off for your medical appointments. I was when I was working full-time. It was considered a reasonable adjustment under the Disability Act. After all, it’s not our fault we need the regular checks. Can you say what kind of job you do?

Do you think it’s actually this particular job that’s getting you down? It’s ok to say if it is. I’ve had jobs I’ve hated and that have got on top of me. It’s not good to live that way. Is part-time an option for you in this job? Can you say what specifically about this job is the issue? How long have you been doing this job? It does take a while to get used to things, and the early weeks in a new position are often mad and stressful.

You mention wanting a CGM? Have you got the Libre? Have you asked your team for a pump? You don’t need good control necessarily to get one. There are various criteria you need to meet.

Are there any particular problems with your control we can make suggestions about?

You’ve come to the right place. This is a friendly, supportive forum with loads of nice people. It’s been a great support to me just being amongst people who understand.

 

[Bruce Stephens]

There are various criteria you need to meet.

One criterion is that you be unable to keep good enough control with MDI, so I don't understand why poor control would be a factor in not offering a pump (or a CGM). That's the opposite of what the various guidelines say.

 

[HelH]

I understand that Libre CGM is now available to anyone who is insulin dependent irrespective of postcode/control etc. I'd advise speaking to your team - even under old criteria, lack of control is reason to have come!
As regards work, agree you should be allowed time off for medical appointments- depending on type of work etc is there a staff health or hr department you could approach. Many firms recognise Diabetes as a hidden disability.

Stress hormones do not do your blood sugar levels any favours & definitely a factor in fluctuations in mood too. Lots to juggle but your health should be a priority & if employer is not supportive, remind them about their Duty of Care....

 

[Clarelryxx]

@Honey45 Sorry you’re feeling so low. Diabetes is an extra burden when you have other stresses, and you’re definitely not making a fuss. It’s hard - it’s hard to juggle life and fit the diabetes in day after day, month after month. It can be exhausting and frustrating, and we never get a day off from it.

First thing - I think you should be allowed time off for your medical appointments. I was when I was working full-time. It was considered a reasonable adjustment under the Disability Act. After all, it’s not our fault we need the regular checks. Can you say what kind of job you do?

Do you think it’s actually this particular job that’s getting you down? It’s ok to say if it is. I’ve had jobs I’ve hated and that have got on top of me. It’s not good to live that way. Is part-time an option for you in this job? Can you say what specifically about this job is the issue? How long have you been doing this job? It does take a while to get used to things, and the early weeks in a new position are often mad and stressful.

You mention wanting a CGM? Have you got the Libre? Have you asked your team for a pump? You don’t need good control necessarily to get one. There are various criteria you need to meet.

Are there any particular problems with your control we can make suggestions about?

You’ve come to the right place. This is a friendly, supportive forum with loads of nice people. It’s been a great support to me just being amongst people who understand.

Hi yes I feel exactly the same most days and I’m struggling to cope with the adjustment s to my life and I’m only 6 weeks in I work long hours as a freelance hairdresser and some days I’m exhausted just trying to muddle on through and try to get through my daily routine this chat forum has always given me help and advice when I’ve hit some low points and just need a little support as I don’t have an appointment till Dec 9th so I’m trying not to be too hard on myself

 

[42istheanswer]

With regards to mental health, there has recently been a move in national guidelines to not give medication immediately and to look at offering support (whether CBT, online help courses, groups, person centred counselling) etc first. It might be worth googling "IAPT <your area>" as in many areas you can self refer and thus avoid the risk of GP suggesting medication if they aren't aware of the recent change.

If you work for a large enough company to have an Occupational Health department then there might also be counselling available through work as well, which sometimes can be less of a wait than through the NHS.

 

[Honey45]

@Honey45 Sorry you’re feeling so low. Diabetes is an extra burden when you have other stresses, and you’re definitely not making a fuss. It’s hard - it’s hard to juggle life and fit the diabetes in day after day, month after month. It can be exhausting and frustrating, and we never get a day off from it.

First thing - I think you should be allowed time off for your medical appointments. I was when I was working full-time. It was considered a reasonable adjustment under the Disability Act. After all, it’s not our fault we need the regular checks. Can you say what kind of job you do?

Do you think it’s actually this particular job that’s getting you down? It’s ok to say if it is. I’ve had jobs I’ve hated and that have got on top of me. It’s not good to live that way. Is part-time an option for you in this job? Can you say what specifically about this job is the issue? How long have you been doing this job? It does take a while to get used to things, and the early weeks in a new position are often mad and stressful.

You mention wanting a CGM? Have you got the Libre? Have you asked your team for a pump? You don’t need good control necessarily to get one. There are various criteria you need to meet.

Are there any particular problems with your control we can make suggestions about?

You’ve come to the right place. This is a friendly, supportive forum with loads of nice people. It’s been a great support to me just being amongst people who understand.

Thank you for your advice. Really appreciate it! I already love this forum and can’t believe I didn’t know it existed. I have sent my manager a link to the Diabetes UK Website so hoping that this can change, I’ve also submitted to buy additional annual leave for next year. I said this can help me with managing my appointments without affecting work. I work for my local council health/social care funnily enough, so I’m really hoping that they can understand a bit more and ease my stresses. This job I have wanted for so long, I feel so lucky to be in the job, my mindset is just not in a good place. Very negative and thinking everyone out to get me when they’re probably not but can’t help it. Not dealing with situations well.

I’ve recently moved from a job I really did not enjoy that was permanently at home, so career wise I have made a good choice. I think it’s just a lot happening at once and it’s all almost too much to cope with at the moment.

I do have the Libre and so lucky to have this. Currently I am tweaking to get tighter control for a better hba1c ready for pregnancy. I have been trying to get the pump through my diabetes centre since 2017. They want justification to give me one which I understand but my points aren’t valid enough. I know that I will do well on the pump as love technology and can fine tune, but I’m angry it’s taking so long and so many hurdles when I know and see so many other type 1 diabetics with it. CGM wise, again I just know there is better technology but can’t get my hands on it and i know diabetes wise things can be made better for me with this, I guess it’s just my own frustrations.

Thank you so much for your support. Even just writing it out to someone and getting it all out of my head, some things sound silly and I wonder why I’m even worrying. Control wise, I’m doing the best I can. Tweaking insulin and eating very boring plain foods (hoping to also loose weight but it’s not budging even though I’ve been trying) ah the list is endless ay. Thank you again for your message and offer of support. X

 

[Honey45]

One criterion is that you be unable to keep good enough control with MDI, so I don't understand why poor control would be a factor in not offering a pump (or a CGM). That's the opposite of what the various guidelines say.

My control with MDI isn’t really bad, it just feels a lot more effort and lots more hiding to inject than I would do with the pump you know…

 

[Honey45]

I understand that Libre CGM is now available to anyone who is insulin dependent irrespective of postcode/control etc. I'd advise speaking to your team - even under old criteria, lack of control is reason to have come!
As regards work, agree you should be allowed time off for medical appointments- depending on type of work etc is there a staff health or hr department you could approach. Many firms recognise Diabetes as a hidden disability.

Stress hormones do not do your blood sugar levels any favours & definitely a factor in fluctuations in mood too. Lots to juggle but your health should be a priority & if employer is not supportive, remind them about their Duty of Care....

Hello, thank you! I have a Libre sorry I should have put this. But thank you for that and by mentioning that you’re probably helping a lot of others who don’t have it yet! I’m going to see what happens with the appointments… I have now sent them the diabetes uk link which will hopefully help them to understand that it is a hidden disability and under the acts.

Lots of stress hormones going on at the moment, I also have PCOS and 1 ovary as had other removed. I think I’m also scared about not being able to conceive and a worrying pregnancy when the time comes. Lots of worry and anxiety I guess, only realising as I’m writing it all out. I agree, I went in to the new job very sure about my health being my priority but it’s easily been flipped by hearing comments and not much faith in what management have said so far. Hoping things change though the more they are learning. Thank you x

 

[Inka]

Ah @Honey45 my job was at a local council too, and they most definitely didn’t make me use my leave for my diabetes appointments. Feel free to tell your council that! All I did was give them as much notice as possible and arrange to pass on any necessary information to anyone who might need to cover my work. My manager did initially try to say it counted as leave but after I explained these were connected to my diabetes, they backed off.

 

[Bruce Stephens]

CGM wise, again I just know there is better technology but can’t get my hands on it and i know diabetes wise things can be made better for me with this, I guess it’s just my own frustrations.

I must admit I'm not sure that a different CGM would make that much difference to me. I can sort of imagine that being able to see my BG on a watch might be sometimes convenient but I also know that I could probably do that with Libre 2 and I've not been bothered enough to do it.

I get the frustration: it seems really likely that the lives of all of us (who don't already have one) would be much simpler (and our control better) with a closed-loop. It also seems obvious that's where things are heading, so I'd just like them to get on with it and offer me one. (Unfortunately I suspect the next step will be NICE saying (more or less) anyone who qualifies for a pump ought to be offered one as part of a closed-loop. And right now I don't qualify.)

 

[Inka]

Would it be simpler though @Bruce Stephens ? I admit I’ve become disillusioned with the idea of closed loops. The major cause of highs with my pump isn’t me or my calculations or not testing enough or anything like that - it’s cr*ppy cannula sites. The more you use a pump, the cr*ppier the sites get. It’s the absorption and the cannulas that need sorting IMO. If they worked 100%, I’d take that over a loop any day.

 

[Bruce Stephens]

Would it be simpler though @Bruce Stephens ? I admit I’ve become disillusioned with the idea of closed loops. The major cause of highs with my pump isn’t me or my calculations or not testing enough or anything like that - it’s cr*ppy cannula sites. The more you use a pump, the cr*ppier the sites get. It’s the absorption and the cannulas that need sorting IMO. If they worked 100%, I’d take that over a loop any day.

I'm sure there'd be other kinds of problems, yes, and I can imagine varying absorption at various sites could be very annoying. (Though if they're just a bit different from each other the algorithms could adjust for that automatically.)

I agree completely that having to change site every ~3 days feels like it could get annoying quickly. (I mean my Libre sensor can work for 14 days, so why not a cannula?)

Even so, people who've used a closed-loop seem positive about the experience. But perhaps that's a biased sample since they're almost all people who've become accustomed to using a pump?

Which is an even stronger argument for a trial to include people who've never used a pump, I'd have thought.

 

[nonethewiser]

Would it be simpler though @Bruce Stephens ? I admit I’ve become disillusioned with the idea of closed loops. The major cause of highs with my pump isn’t me or my calculations or not testing enough or anything like that - it’s cr*ppy cannula sites. The more you use a pump, the cr*ppier the sites get. It’s the absorption and the cannulas that need sorting IMO. If they worked 100%, I’d take that over a loop any day.

Have you tried alternative cannula sites, currently using legs as, much like on injections stomach can get overused then problems occur.

 

[Bruce Stephens]

when I know and see so many other type 1 diabetics with it.

The overall proportion is apparently 10%: https://digital.nhs.uk/data-and-inf...tional-diabetes-audit-2019-20-type-1-diabetes

(That was 2019-2020. I doubt it's changed much since then.)

 

[Honey45]

Hi yes I feel exactly the same most days and I’m struggling to cope with the adjustment s to my life and I’m only 6 weeks in I work long hours as a freelance hairdresser and some days I’m exhausted just trying to muddle on through and try to get through my daily routine this chat forum has always given me help and advice when I’ve hit some low points and just need a little support as I don’t have an appointment till Dec 9th so I’m trying not to be too hard on myself

Ah sorry to hear you’re feeling the same, but I can’t believe the power of this forum, speaking to people that are going through similar really does help. Did you say you’ve been diagnosed for 6 weeks? That’s not long at all. Give yourself time to adjust, it’s always most difficult at the start… don’t be hard on yourself. Is there anything in particular diabetes control wise that you are worrying about?

 

[Leadinglights]

The thing I really love about the forum is that people who are struggling themselves are supportive and sympathetic with others, it makes so much difference to people to know they are not alone and can ask for help.

 

[Clarelryxx]

Ah sorry to hear you’re feeling the same, but I can’t believe the power of this forum, speaking to people that are going through similar really does help. Did you say you’ve been diagnosed for 6 weeks? That’s not long at all. Give yourself time to adjust, it’s always most difficult at the start… don’t be hard on yourself. Is there anything in particular diabetes control wise that you are worrying about?

I’ve had terrible sugar drops mostly when I go shopping i can test my sugar s and can be 9 then 10 mins walking round a supermarket I start to feel weird and can drop to 5 and feel shaky and panic feeling so now hate going shopping I just find my sugar s are so unpredictable tonight for instance before my food I was 8.5 I’m on a fixed amount of 5 units novo rapid before each meal as-well as my background lantus of 8 units I had pasta and chicken in spicy tomato sauce plus garlic bread and was 5.9 2hrs later I know it’s early days so it’s probably my body adjusting but I don’t like the weird floating feeling s and when this happens it affects my mood

 

[Honey45]

I’ve had terrible sugar drops mostly when I go shopping i can test my sugar s and can be 9 then 10 mins walking round a supermarket I start to feel weird and can drop to 5 and feel shaky and panic feeling so now hate going shopping I just find my sugar s are so unpredictable tonight for instance before my food I was 8.5 I’m on a fixed amount of 5 units novo rapid before each meal as-well as my background lantus of 8 units I had pasta and chicken in spicy tomato sauce plus garlic bread and was 5.9 2hrs later I know it’s early days so it’s probably my body adjusting but I don’t like the weird floating feeling s and when this happens it affects my mood

If you’re noticing that it’s a pattern, would this be around the same time of day too? Had you given your bolus(quick acting) insulin before shopping? Just trying to work out if it’s your bolus (mealtime quick acting insulin) or your basal (long acting insulin) that’s causing you that rapid drop in a short space of time… I know that feeling. It’s not nice, especially when you’re shopping you’ll end up getting lots of sugary things and probably eating it all before leaving the shop! That’s what I’m like anyway when feeling hypo/dropping bloods!

 

[Clarelryxx]

I’ve had terrible sugar drops mostly when I go shopping i can test my sugar s and can be 9 then 10 mins walking round a supermarket I start to feel weird and can drop to 5 and feel shaky and panic feeling so now hate going shopping I just find my sugar s are so unpredictable tonight for instance before my food I was 8.5 I’m on a fixed amount of 5 units novo rapid before each meal as-well as my background lantus of 8 units I had pasta and chicken in spicy tomato sauce plus garlic bread and was 5.9 2hrs later I know it’s early days so it’s probably my body adjusting but I don’t like the weird floating feeling s and when this happens it affects my moo

If you’re noticing that it’s a pattern, would this be around the same time of day too? Had you given your bolus(quick acting) insulin before shopping? Just trying to work out if it’s your bolus (mealtime quick acting insulin) or your basal (long acting insulin) that’s causing you that rapid drop in a short space of time… I know that feeling. It’s not nice, especially when you’re shopping you’ll end up getting lots of sugary things and probably eating it all before leaving the shop! That’s what I’m like anyway when feeling hypo/dropping bloods!

It seems to be 2/3hrs after I’ve eaten meal so I’m guessing I might need something to snack on before I go in to shop to hopefully keep my levels up but just not sure what the best things are to eat