Feeling dispondent

[Annie86]

Hi all.
Diagnosed with type one diabetes in 1998 and to be honest have struggled with management ever since this point. Largely as was accused for many years of not taking my insulin even though I was. Did the usual teenage rebellion after a few years and actually stopped taking it. Moved to uni and tried to sort myself out. After a few years we realised that I was having severe reaction's to the long acting insulin (lantus and levemir both tried) causing me to become hypoglycaemia at nights and fitting on several occasions.

So now on a pump and have been for approx 4/5 years. Honestly the best thing I ever did. Having said that though I'm finding myself more and more dispondent with my treatment.

HbA1c is the best it's ever been but other results such as kidneys etc aren't so good. Just feels like it doesn't matter what you do things keep going wrong. I know some damage is inevitable after few years of rebellion, but it just feels too much.

Diabetes team at hospital keep promoting more and more appointments for follow up but I don't see the point?! I'm doing everything I need to and as I say my HbA1c is better than ever. Why go speak to them about the same thing week in and week out. Surely it won't change the results.

Think I'm just having a rant more than anything. Talking doesn't make things better with diabetes team as in all honesty they have no idea what it's like. They don't live with this day in and day out. The way hypo's make you feel awful for the day or the headaches they give me when I need to be at work. They have no clue.

Think I'm just having a pity party and a tad emotional, maybe slightly worried lol.
How do I get out of this emotional riptide?

 

[noblehead]

Hi @Annie86 and welcome to the forum

Understand your frustration and why you feel emotional at this time, but you have to give yourself some credit if you've turned your diabetes control around and have a good HbA1c.

Unfortunately the follow-up appointments will be necessary if they've picked-up a decline in your kidney function, they'll want to monitor your progress so that they act if need be, but your right it's hard for a non-diabetic to understand what it's like to live with diabetes but that doesn't mean to say they don't care or have empathy towards people who do live with diabetes, just try and stay positive and take good care of yourself. Best wishes.

 

[azure]

Hi @Annie86

I think we all get totally fed up with diabetes now and then. Most days you kind of cope with it, but sometimes it really gets to you.

You mentioned your appointments - are they for specific things to help you, or just routine ones? I was going to ask if you had a nice sympathetic DSN to talk to.

I don't have a magic answer, I'm afraid : ( But doing something new can help sometimes, I find. Just a shake up to your routine can help give you a boost.

You could look at the Diabetes Burnout thread maybe, or the Emotional Health section. I think we all worry because it would be silly not to, but I try not to let diabetes cast a shadow over everything.

 

[donnellysdogs]

Ok, so you have a good hba1c now. Is your diet balanced with nutrition though? This will help to keep overall illnesses at bay

No they don't live with it necessarily everyday (although some hospital staff do have T1 or T2)... But they do genuinely want the best for you. If they see other things of concern they are dutibound to try and look after your health.

I had low hba1c's but it didn't stop other illnesses attacking me.... I wish dearly now that I didn't have **** from these other illnesses now. I realise more and more each day just how important it is to have all round nutrition and also most importantly belief in myself and the ability not to get wound up and to be able to relax and have a good time..... All round health, nutrition and wellbeing is important.

You mention hypo's...these aren't good to have and they could be concerned that these are affecting you and are trying to help you...
Hba1c's may be better, but it isn't good to have an improved hba1c with ongoing hypo's....

Have you got someone understanding to go with you to appointments? I've had some consultants and nurses I've disliked but they had my best intentions at heart.

I know this writing will be very hard to read, as it sounds like I'm on the side of hospital staff but I'm not. Having almost lost my driving licence years ago and having exceptional care from diabetes teams I know from my own experiences that they are only trying to look after you....

 

[himtoo]

Hi @Annie86
welcome to the froum
i don't think any of us can say you are having a rant -- everything you said will resonate with all of us at different points.

it is a life illness , so we do need to find ways to cope with the fact it never goes away and can impact us.

i think what I have learned most of all is to take it 1 day at a time and to count my success.

 

[ann34+]

" The way hypo's make you feel awful for the day or the headaches they give me when I need to be at work. They have no clue."

Thing is, especially as you are on the pump, you should not be having many hypos, a low HbA1c with hypos is not good control at all. And hypos that have a lasting effect such as you are describing - i.e. all day and/or headaches - mean you probably have hypo unawareness to a degree. You are not recognising them soon enough. I have been there. For many years. Not good. These hypos will affect mood overall. What is the concern of the hospital staff? If it is mainly the kidney issues, and not the hypos, perhaps you need to tell them about these. Fewer hypos and you will at least hopefully feel a lot better. Best wishes

 

[donnellysdogs]

Whatever your thoughts you have to gain your own good thoughts around diabetes and your life. I sense that they aren't balanced and their is a mild depressive thought in your posting,
Personally from somebody that has gone from superrb to damned to mediochre to superb I wish in those damned years I had listened. I wan't bad, I thought like you but I so wish now I had lustened more..
From my heart I really hope that you can start to see that professionals are actually there for life and they want you to have a good life. Today I have been diagnosed with more **** and I wish more than anything that those times of ignoring professionals and being ok, but not perfect could be reversed.
I can't undo the past. I can tell you my regrets. I so, so hope I can help to stop any regrets for you.
Please, all I ask... If they want to see you there must be a reason. Please lusten and perhaps report back to people that live with regrets....we all only wish better for others. You are in my thoughts...x

 

[Annie86]

Hi @Annie86 and welcome to the forum

Understand your frustration and why you feel emotional at this time, but you have to give yourself some credit if you've turned your diabetes control around and have a good HbA1c.

Unfortunately the follow-up appointments will be necessary if they've picked-up a decline in your kidney function, they'll want to monitor your progress so that they act if need be, but your right it's hard for a non-diabetic to understand what it's like to live with diabetes but that doesn't mean to say they don't care or have empathy towards people who do live with diabetes, just try and stay positive and take good care of yourself. Best wishes.

Hi.noblehead.
Thanks for response. I know the appointments are necessary to a degree but I don't get what they will actually change (if that makes sense?).
I understand they care and I know they want what is best for all.of us. I think I'm just a bit emotional and feeling defeated. I'm very good at supporting others and encouraging others but not so good at doing it for myself.
I keep being told by my dsn "what would you tell your patients?" (I'm a nurse) and she's right but it's frustrating.

 

[Annie86]

Hi @Annie86

I think we all get totally fed up with diabetes now and then. Most days you kind of cope with it, but sometimes it really gets to you.

You mentioned your appointments - are they for specific things to help you, or just routine ones? I was going to ask if you had a nice sympathetic DSN to talk to.

I don't have a magic answer, I'm afraid : ( But doing something new can help sometimes, I find. Just a shake up to your routine can help give you a boost.

You could look at the Diabetes Burnout thread maybe, or the Emotional Health section. I think we all worry because it would be silly not to, but I try not to let diabetes cast a shadow over everything.

Hi azure

I believe the appointments would be more for support with the dsn etc .... I'm quite independent and apparently from on here now, I'm not much of a talker (they say healthcare professionals make the worse patients, well that's me lol). My dsn is lovely but just feel I should know what I'm doing by now and to a degree feel I'm wasting their time.
I think diabetes burnout is where I am and have been for a little while. Just need something to kick me up the backside again.
Thank you for your reply though
Anna

 

[Annie86]

Ok, so you have a good hba1c now. Is your diet balanced with nutrition though? This will help to keep overall illnesses at bay

No they don't live with it necessarily everyday (although some hospital staff do have T1 or T2)... But they do genuinely want the best for you. If they see other things of concern they are dutibound to try and look after your health.

I had low hba1c's but it didn't stop other illnesses attacking me.... I wish dearly now that I didn't have **** from these other illnesses now. I realise more and more each day just how important it is to have all round nutrition and also most importantly belief in myself and the ability not to get wound up and to be able to relax and have a good time..... All round health, nutrition and wellbeing is important.

You mention hypo's...these aren't good to have and they could be concerned that these are affecting you and are trying to help you...
Hba1c's may be better, but it isn't good to have an improved hba1c with ongoing hypo's....

Have you got someone understanding to go with you to appointments? I've had some consultants and nurses I've disliked but they had my best intentions at heart.

I know this writing will be very hard to read, as it sounds like I'm on the side of hospital staff but I'm not. Having almost lost my driving licence years ago and having exceptional care from diabetes teams I know from my own experiences that they are only trying to look after you....

Hi donnellysdogs

My diet is generally quite varied and full of fruit and veg as well as protein and some cards. Generally well in self though having said that I've had pneumonia this year and a few colds. ( I have a couple of other health Conditions including asthma and a ventricular septal defect (hole in the heart)).
I know they only have our best interests at heart but I'm not very good at sharing or communicating. I kind of feel I should know it by now and it's tough if I don't (I know that's stupid but probably the nurse in me)
Thanks for your advice though

Anna

 

[Annie86]

" The way hypo's make you feel awful for the day or the headaches they give me when I need to be at work. They have no clue."

Thing is, especially as you are on the pump, you should not be having many hypos, a low HbA1c with hypos is not good control at all. And hypos that have a lasting effect such as you are describing - i.e. all day and/or headaches - mean you probably have hypo unawareness to a degree. You are not recognising them soon enough. I have been there. For many years. Not good. These hypos will affect mood overall. What is the concern of the hospital staff? If it is mainly the kidney issues, and not the hypos, perhaps you need to tell them about these. Fewer hypos and you will at least hopefully feel a lot better. Best wishes

Hi ann34

Thanks for your response. I think their main concern at the moment is the kidneys. So new appointments to discuss overall care and control (I believe though not 100% sure)

I recognise hypo's from 4.3 when awake so fairly early recognition. Unfortunately I get minimal to no signs when sleeping which Is when I wake up with banging heads etc that just don't seem to go. I've had night hypo's for years and despite wearing sensors etc we still haven't quite managed to get on top of it.
They can see the hypo's from the pump and handset downloads and actually didn't say a lot about those this time.

Think I'm just overall frustrated with everything diabetes.

 

[ann34+]

Hi ann34

Thanks for your response. I think their main concern at the moment is the kidneys. So new appointments to discuss overall care and control (I believe though not 100% sure)

I recognise hypo's from 4.3 when awake so fairly early recognition. Unfortunately I get minimal to no signs when sleeping which Is when I wake up with banging heads etc that just don't seem to go. I've had night hypo's for years and despite wearing sensors etc we still haven't quite managed to get on top of it.
They can see the hypo's from the pump and handset downloads and actually didn't say a lot about those this time.

Think I'm just overall frustrated with everything diabetes.

In my experience night hypos have always been the worst, and for the effect the next day/s - I have had to raise my control a bit at night, though i can see that might be more of a problem if you have a kidney issue - maybe ask your team to help ? fewer hypos have, i find, a big effect on removing a low mood, your team probably know this and should help.
PS Re feeling fed up/despondent re diabetes - you mention you have been ill this year - not just with usual viruses, but pneumonia - this is a serious illness - even ordinary illness often lowers most people's mood near the end of the recovery stage - possibly you have got back to work a bit too soon?

 

[Kristin251]

I get very moody when I have hypos. They aren't really hypos but 70's. I'm generally in the 80's but any downward fluctuation feels like a hypo. Eyes get blurry, mood gets low etc. it's nasty. You certainly are not alone with diabetic burn out. The wind blows and things change. We can only control so much and you need to know that. We have to power through. There are many days I can't wait to go to bed and wake up to a new day. I just get tired of fighting.