Question ❓

[sally mercer]

Why is it that most of the responses I have had, are from moderators? Is it because you feel you have to answer because the subject is to niche to provoke a response from anyone else? I feel very heavily moderated. Some of the comments have been great but some have left me feeling like I'm stupid and not worthy of being on the forum. I'm trying to encourage John my partner to find support but as I've found this difficult, I couldn't recommend it for him.

 

[Lakeslover]

I think it’s partly that as you say very few people have had your experience and therefore can’t comment. But also that moderators in general are very active on the site and will try to help everyone if they can.

 

[Rokaab]

I think it probably depends what you're asking, for instance the two threads of yours about the Covid vaccine - well I have nothing to add so didnt reply - I was already T1 some 40ish years before I had the Covid vaccine (and the 3/4 other T1s I personally know where diagnosed before Covid as well)

 

[ElenaP]

Why is it that most of the responses I have had, are from moderators? Is it because you feel you have to answer because the subject is to niche to provoke a response from anyone else? I feel very heavily moderated. Some of the comments have been great but some have left me feeling like I'm stupid and not worthy of being on the forum. I'm trying to encourage John my partner to find support but as I've found this difficult, I couldn't recommend it for him.

Thus far, over 700 people have read your original post. It is up to each individual to decide if they want to contribute to the discussion. I feel that I, personally, have learned a lot from people's responses over the years. If I do not agree with someone's comments, I will still respect his/her opinion, and then I move onto the next thing. None of us are perfect.

 

[Melgar]

Hi there @sally mercer . I was one of the moderators who responded to you. I didn’t respond to your post as a moderator, but as someone with unstable blood sugars and struggling with it ,and a question mark over my diabetic type.

To give you a brief background from where I came from. My brother is Type 1, but was initially diagnosed as T2. My own blood sugars are very unstable and my dr thinks I may have late onset T1, but there is still a question mark. As a consequence of having the genetic susceptibility for T1 I did a lot of research around late onset T1 to try and understand it. My response to you was born from my own experiences and research. I’m sorry it has left you feeling the way you feel and in no way was it meant as a judgement. Sally, this is a great site, and there are a lot of very supportive Members. We try and answer questions from our own experiences. I do hope this has not put you off the forum or asking questions. Mel

 

[sally mercer]

Thus far, over 700 people have read your original post. It is up to each individual to decide if they want to contribute to the discussion. I feel that I, personally, have learned a lot from people's responses over the years. If I do not agree with someone's comments, I will still respect his/her opinion, and then I move onto the next thing.

As I'm new how do I see who has read it. I don't know how to properly navigate a forum. I've been told off for not putting myself as a family member, I've been told adding a tenous link and posting stuff that is not backed up by facts. Maybe I should be told off for my partners diabetes breaking my family apart, due to mood swings and aggression. My 12 year old daughter is terrified by him. We don't know whether he is up or down or whether it's even safe to speak. However none of this is his fault and I want to fight for him.

 

[sally mercer]

Hi there @sally mercer . I was one of the moderators who responded to you. I didn’t respond to your post as a moderator, but as someone with unstable blood sugars and struggling with it ,and a question mark over my diabetic type.

To give you a brief background from where I came from. My brother is Type 1, but was initially diagnosed as T2. My own blood sugars are very unstable and my dr thinks I may have late onset T1, but there is still a question mark. As a consequence of having the genetic susceptibility for T1 I did a lot of research around late onset T1 to try and understand it. My response to you was born from my own experiences and research. I’m sorry it has left you feeling the way you feel and in no way was it meant as a judgement. Sally, this is a great site, and there are a lot of very supportive Members. We try and answer questions from our own experiences. I do hope this has not put you off the forum or asking questions. Mel

I've found the forum experience to be rather negative but maybe that's because I've never been on one and I don't know how to navigate it. I'm already feeling vulnerable, so I would take feedback negatively. It's more difficult because I don't have the condition myself I'm just watching someone else going through it. I want John to join and say something, even if it's talking about the weather you guys. Maybe he could talk about mood swings and aggression and not be judged, or talk about why his alarm is constantly ringing and can't and causing us all to jump out of bed

 

[Rachox]

Hi @sally mercer to see how many people have viewed a post click on ‘what’s new’ at the top of the screen, scroll down to the post you’re interested in then to the right of the title there is a box telling you how many replies and how many views to the post. See screen shot.

 

[Melgar]

@sally mercer and we would be delighted to help him navigate all this. It really is a shock to many people here when they first get diagnosed, whether it’s T1 or T2. We are here to support and share our experiences. It is a scary diagnosis. It is scary for all of you. He is going through all the emotions of someone who is newly diagnosed. You and your daughter are too. There are many spouses and family members who ask questions here. You are on this journey with him. Please feel free to ask as many question about his diagnosis. It is a big learning curve for all of you. There are many many families who have gone through this and I am sure will be only too happy to share with you.

 

[sally mercer]

@sally mercer and we would be delighted to help him navigate all this. It really is a shock to many people here when they first get diagnosed, whether it’s T1 or T2. We are here to support and share our experiences. It is a scary diagnosis. It is scary for all of you. He is going through all the emotions of someone who is newly diagnosed. You and your daughter are too. There are many spouses and family members who ask questions here. You are on this journey with him. Please feel free to ask as many question about his diagnosis. It is a big learning curve for all of you. There are many many families who have gone through this and I am sure will be only too happy to share with you.

Is there a family page that I can go to?

 

[sally mercer]

Hi @sally mercer to see how many people have viewed a post click on ‘what’s new’ at the top of the screen, scroll down to the post you’re interested in then to the right of the title there is a box telling you how many replies and how many views to the post. See screen shot.

View attachment 70710

Thank you

 

[Melgar]

Is there a family page that I can go to?

Most family members ask questions and post experiences in the T1 and LADA forums. Members are happy to support and assist family members too. I hope that helps.

 

[Lamont D]

Hi @sally mercer ,
I'm not a mod.
But I am an experienced poster with a rare (ish) condition.
All in my information, on the left hand side of my post.
I have been answering questions on what I really know or I find out or experience it.
I will very rarely answer posts, that I have no experience with.
I and others try and answer as if we want you to understand and learn from our experience.
If you find it harsh or condescending, there is a report button.

This is the only forum that has other patients of my condition, that there is a lot of information and the understanding of what the condition entails, the logic, science, and of course treatment that is recommended but not or never pushed.

We have since I have been on here some really knowledgeable people, who have had the different and individual cases of metabolic conditions, such include diabetes.

And myself and another poster, asked for a sub forum, and got one, which is unique, as far as I am aware.
And the number of questions is really unbelievable.
These people are the same as you, looking for answers, trying to work out the best way to manage our issues.
Hopefully a good response is one that is suitable.
I'm sorry, if you feel let down, I think and believe that is uncommon.
I wish you well on here and your partner's journey.
I will look at your post, but I'm not knowledgeable with covid or the vaccine.
Best wishes.

 

[HSSS]

As I'm new how do I see who has read it. I don't know how to properly navigate a forum. I've been told off for not putting myself as a family member, I've been told adding a tenous link and posting stuff that is not backed up by facts. Maybe I should be told off for my partners diabetes breaking my family apart, due to mood swings and aggression. My 12 year old daughter is terrified by him. We don't know whether he is up or down or whether it's even safe to speak. However none of this is his fault and I want to fight for him.

I’m sorry you feel you’ve been told off (and that it’s such a tough time for your family).

It certainly wasn’t my intention, more a request to update your profile (to benefit yourself) so that you get more appropriate replies in the future. It’s not an unusual request to new members as sometimes it’s hard to decide which will be the best category on day 1.

We also ask everyone to add links to their sources if they are talking about things beyond their personal experiences, not just you. It’s to try and make sure the forum and it’s contents are trustworthy and can be verified And is contained within the rules and ethos (see below in my signature (and other mods) at the end of each post.

When I first came to the forum 6 yrs ago it was a steep curve for me too as I’d not done anything similar either. It comes with time. If you need technical help just ask the question and someone will help guide you. The only daft question is the one unasked.

 

[Lupf]

Hi @sally mercer I am very sorry to hear what you are going through. Having a loved family member being in a dark place is so hard, and you have my sincere sympathies. While you are trying to help for your partner and keep your daughter well, you also should look out for yourself. Try to speak with good friends about what you are going through. You could also consider getting professional help. Big hugs and take care.

 

[ElenaP]

@sally mercer, I wonder if you could explain to your 12-year old that "Daddy is not well and, if he is bad-tempered, it is not him, it is the illness".
Type 1 diabetes is a difficult illness, where we have to be on guard all the time, so that blood glucose does not go too high or drop too low, both of which can make us feel very unwell. Being unwell affect moods, the same way that many other chronic illnesses do.

Blood glucose alarms are there for safety, but being woken from a deep sleep by alarms is tiring. I have two suggestions: First, would you consider wearing earplugs in bed? This would allow your husband to treat his low, or high, blood sugars without feeling stressed about having woken you. Secondly, his hospital diabetes nurse will be able to help him to adjust carbohydrates and insulin so that he has fewer alarms. Also, there are other factors that affect blood glucose readings, such as bad news and arguments, for which you cannot plan. However, constantly keeping an eye on insulin and carbohydrate ratios do help. This is where the hospital diabetes team is invaluable.

Good luck! Try to add meditation to your daily routine, whether it be walking, yoga, or tai chi.

 

[JoKalsbeek]

Why is it that most of the responses I have had, are from moderators? Is it because you feel you have to answer because the subject is to niche to provoke a response from anyone else? I feel very heavily moderated. Some of the comments have been great but some have left me feeling like I'm stupid and not worthy of being on the forum. I'm trying to encourage John my partner to find support but as I've found this difficult, I couldn't recommend it for him.

I'm a type 2, so I don't usually respond to queries about T1, whether they come from T1's or their family members. So you're not being ignored by "regular" members, the bulk of us are T2's as there's generally more of those, and we can't always help because we don't know how. I can tell you though, that the mod team's just a bunch of members who took on a little extra responsibility when they were elected to do the job for a while... Usually they're the ones who are the most active, know a lot, have a bunch of empathy, and therefor get nominated for the volunteer job in the first place. So they're not so much gestapo, just kind of the knowledge-elite when it comes to all things diabetes. I've been here for a long time, and I've been told about things I got wrong in regards to forum rules quite often. (Really. You don't want to know just how often, and I do believe they've held back!) I tend to forget what it was about immediately after due to ADHD, so the team has to repeat themselves a lot, but no-one's ever actually gotten angry with me for it. Replies or explanations about something can seem a little curt, but that's more a matter of them being very, very busy keeping this place in order, there's a lot of spam and lately, AI posters/posers coming in. So however it may come across, they do mean well, and they keep this one of the safest places on the internet for people with blood sugar issues and those who love them.

In relation to the C19 vaccination, after the condition struck, there did seem to be an influx of new, totally baffled T1 members who had no family history, but that was either after vaccination or infection, so... My guess is it has to do with C19 in whatever form, a natural infection or a vaccination. But that's just an observation from me that has no back-up whatsoever. Same as I noticed more strokes, heart- and other vascular issues with relatively young, fit and healthy men in our circle of acquaintances. But it's just something I noticed, and I could be completely off, everything being very non-scientific and potentially coincidental; one of the reasons why it's not something I'd usually comment on. There's a lot of us here, but sometimes we just don't say something because we can't be sure, or just really don't have an answer to suit.

I hope you stick around, and invite your husband. This really is a safe place.
Hugs,
Jo

 

[EllieM]

Maybe I should be told off for my partners diabetes breaking my family apart, due to mood swings and aggression. My 12 year old daughter is terrified by him. We don't know whether he is up or down or whether it's even safe to speak. However none of this is his fault and I want to fight for him.

Hi @sally mercer
Diabetes, of whatever type, can be a hard diagnosis for anyone, and it can take time to work through feelings when going through such a profound lifestyle change. And that applies to family members too.

I was lucky (in a way) to be diagnosed as a child, with a parent already T1, so I didn't struggle the way that some new adult T1s do. And I am very lucky to have a partner who supports me through my diabetes, particularly the hypos, I was already diabetic when we met so none of it was a shock to him. And likewise my children grew up with my diabetes so they knew to ask "Is your blood sugar low" whenever I got irritable or stressed. (Believe me, it's really annoying to be asked this when you are just in a bad mood for whatever reason, but I do appreciate the support of my family.)

But the technology available for new T1s is much better than I was diagnosed, and I would expect that things will get much better as your partner comes to terms with managing his condition. Yes, severe hypos affect your cognition, but hopefully he should be able to learn how to avoid them as time progresses. And yes, I would much prefer to not have diabetes, but it hasn't stopped me from living the life I want.

As regards your husband's mood swings, I can only suggest that you both, separately or together, seek help for this. They may be caused by out of control blood sugar levels, but they can also be caused by other things ? Hopefully his diabetic team is aware of the issue? And if it helps to talk to strangers on a forum about your issues, please consider venting here. You certainly wouldn't be the first person to complain about a diabetic spouse's mood swings.

(The above is all posted as a forum member, not a moderator, by the way. )

Speaking as a moderator, you can reach out to the mod team via the report button or PM (private message, the envelope button on the top right of the page) or just asking on a thread. Most questions can be answered by general forum members if you post on a thread, such as you have on this one. Moderators are just forum members who have volunteered to do moderating duties for a period, so they have some extra privileges over non mod members, but it doesn't magically turn us into superhuman founts of wisdom. It also means that we hang around the forums a lot, so often post on threads that interest us. (I tend to post more on T1 threads because that is my area of experience.)

Good luck with everything. I hope things get easier for your partner, you and your daughter.

 

[Chris24Main]

Hi @sally mercer - Thanks for the input, and personally I'll try to be more mindful about the way that someone new to the forum might feel about a reply from someone with "moderator" in the info - virtually all interaction on the forum itself is just in the form of "interested member" - generally the mods and past mods carry no additional weight; but in moments of vulnerability that isn't going to be clear - point taken, and thank you.

I do totally relate to the mood swings - I terrified myself with one outburst; still gives me the heebie-jeebies thinking about it, and it was over a year ago.

I do hope things go better for you - many of us have the opposite issue, that our family think that we are a little bonkers with an extreme set of views on diet.. it isn't easy when all you want to do is help. Personally, I apologies if anything I've said has made doing that harder for you.