Feeling very lost

[curlygirl]

Hi,

Sorry to join the forum and then immediately ask for advice, but I would appreciate some support if possible.

I have type one and am struggling to cope emotionally. I was diagnosed a few years ago at the age of 22 and although I do everything I should to try to make sure it is well controlled most of the time and achieve good HBA1C's, I am finding the emotional side of it extremely difficult.

When I was diagnosed I was told that "life could be the same as it was, just with a few injections a day." As I didn't have any experience of diabetes I was tempted to believe this, when actually anyone with diabetes knows life is not ever the same again. I'm not saying that life can't be good, but it's definitely different!

Anyway I am a glass half full type of person by nature and I tried to just take it on the chin and get on with things. This perhaps was not the best thing to do as over time I have come to realise that I am carrying feelings akin to grief for the person that I was and what I have lost - is this normal at all? -and if so then what can I do about it?
I feel completely stuck as I don't know what to do about feeling this way and even though I know I can't be the girl I was, and have the life I had, I still find myself wanting that SO much.

I really want to be able to find a 'new normal' and to feel that each day isn't all about the diabetes, but right now it frightens me and stresses me and I would appreciate any advice that people can give as to how to accept it all and move forward.

Really sorry how long this post is - I just started typing and this is where I ended up.

Thanks for reading.

 

[LeeLee]

Hello Curlygirl, welcome to the forum. Sorry I can't offer any practical advice as my own situation is completely different - but here's a virtual (((HUG))) while you're waiting for the other lovely members to respond.

 

[Northerner]

Hi curlygirl, welcome to the forum, no apologies necessary! 🙂 I'm sorry to hear that you are feeling this way, but I can assure you that it is perfectly normal - I think most of us go through this at some stage, and probably encounter the feelings periodically even when we think we have it sussed. Diabetes is a big change to your life, and it makes daily demands on you, so like most chronic conditions it often seems impossible to escape from and that in itself can get you down.

It's good that you are confronting these feelings, and I'm glad you have come looking for reassurance and advice and sharing your experiences. One thing to bear in mind, and something we often overlook, is that people without diabetes often go through periods of doubt and worry, fear and sadness, but because we have diabetes we often attribute those feelings to it. Are there any other things in your life that you feel frustrated or unhappy about? Do you know anyone with diabetes that you can talk to about your feelings? Obviously, you are welcome to talk to all of us here, but often it can be helpful to just have a good old chinwag with people who 'get it', whether you actually talk about diabetes or not 🙂 We organise forum meets or there is a great group called Circle D that is very active socially - there may be a group in your area:

http://www.circledrocks.co.uk/

Do you have an understanding DSN you could talk to? I found just letting things out and having someone just listen very cathartic. Hopefully others will be along to share their experiences soon 🙂

 

[Redkite]

Hi and welcome to the forum 🙂

Sorry to hear you're feeling so down. I think it happens to us all, because it's true to say that life just isn't the same. Yes, you can do almost everything you could before, but you can't be spontaneous and carefree, everything has to be planned and anticipated. And people who don't have type 1 just don't understand what a big deal it can be, so you can end up feeling a bit isolated. This is why it's so good to meet up with others with T1, whether in person or on forums like this one, and just know you are not alone! I read something recently about "chronic grief" - this was on a forum for parents of children with diabetes - which was saying that most parents experience a deep grieving process initially when their child is diagnosed, and after that despite seeming to cope and manage the diabetes, the sadness comes up from time to time and never really leaves us. Especially at times when you/the child doing an activity that requires no thought for people without diabetes, but is a pain in the ass for us.

🙂

 

[Casper]

Sorry to hear you are struggling - please realise you are not alone, and that we on the forum totally 'get it'

I have struggled over the last six years with diagnosis, (diagnosed March 2001) still coming to terms with the grieving process, and knowing that although friends and family are sympathetic, they can't understand.

Please read stories and posts on here, and realise you are not alone..

 

[Riri]

Hia - glad you joined and felt ready to talk about how you are feeling. I've been diabetic for 15 years and only yesterday posted a note on another forum about how low I felt at the moment and my feelings are very much as how you describe them.
For 15 years I have gone through these mixture of emotions at times but I have learnt to try and take each day as it comes and focus on something good each day - be it a lovely walk, retail therapy, some holiday browsing or just going for a coffee and a read of the paper. Simple things but it does help to take my mind of diabetes for a while. I also try and stop and think about how much worse things could be and that normally gives me a little jolt. It's not easy to get positive and think that way I know.
The last bit of advice is maybe go and see your GP and explain how you feel and ask if there is a cognitive behavioural therapist you could see. I'm on a waiting list to see one - others tell me it's helped them a great deal and has given them coping strategies when they feel low. Take care and stay posting - it helps too!

 

[curlygirl]

Just want to say thank you to the people who have taken the time to reply to the things I wrote. It doesn't make everything suddenly easier because others feel the same way, or understand how you feel, but it sure does help you to feel you're not completely alone - so thanks.

If I could stop being frightened of getting my insulin wrong or of my blood sugars doing strange and unexplainable things then I might begin to feel that the diabetes is one part of my life again rather than feeling like it is my life!

Thanks again.

 

[Northerner]

Just want to say thank you to the people who have taken the time to reply to the things I wrote. It doesn't make everything suddenly easier because others feel the same way, or understand how you feel, but it sure does help you to feel you're not completely alone - so thanks.

If I could stop being frightened of getting my insulin wrong or of my blood sugars doing strange and unexplainable things then I might begin to feel that the diabetes is one part of my life again rather than feeling like it is my life!

Thanks again.

You're very welcome 🙂 What insulin regime are you on, out of interest?

 

[curlygirl]

I am on Hypurin Porcine - Isophane and Neutral. I didn't react well to the 'human' insulins and this has a much steadier effect on my sugars etc.

I have the long acting in a morning and then both the long and short acting in an evening before my main meal. (I used to have short in the morning and also with my lunch, but several years ago it became apparent from the hypo's that I no longer needed the extra at those times and the isophane is sufficient to cover through the day).

 

[Northerner]

I am on Hypurin Porcine - Isophane and Neutral. I didn't react well to the 'human' insulins and this has a much steadier effect on my sugars etc.

I have the long acting in a morning and then both the long and short acting in an evening before my main meal. (I used to have short in the morning and also with my lunch, but several years ago it became apparent from the hypo's that I no longer needed the extra at those times and the isophane is sufficient to cover through the day).

That is quite unusual. Have you considered a pump so you can get better 'fine-tuning' at different times of the day, it might help reduce the worry about hypos 🙂 We have at least one member who uses animal insulin in a pump 🙂

 

[curlygirl]

I have thought about a pump, but I'm not sure if that would add to the feelings I am having that pretty much diabetes is ever present and to be dealt with. I'm not sure if not being able to take the pump off and therefore have it on me as another diabetes related 'constant' would be counter-productive at the moment. It's something I have in the back of my mind as something to think about sometimes, but for now I don't think I'd have the confidence to use one that well anyway. Maybe at some point if I can get a handle on the emotional side better again then I would consider it.

 

[Northerner]

I have thought about a pump, but I'm not sure if that would add to the feelings I am having that pretty much diabetes is ever present and to be dealt with. I'm not sure if not being able to take the pump off and therefore have it on me as another diabetes related 'constant' would be counter-productive at the moment. It's something I have in the back of my mind as something to think about sometimes, but for now I don't think I'd have the confidence to use one that well anyway. Maybe at some point if I can get a handle on the emotional side better again then I would consider it.

That's a very good point 🙂 I must admit, it is one of the things that would put me off.

 

[Flutterby]

I too think you have a valid point there and I do hope that it's helped being able to chat on here, I think we do all have times when we feel overwhelmed by Diabetes and it is good to chat to others. Keep on posting and enjoy the fun as well on here - there's plenty of that!

 

[AJLang]

Sorry for my delay in posting but I've been through a 24-48 hour patch of being overwhelmed with hating illnesses - at one point I thought that if I saw another tablet I would throw it at the wall - and that is after 42 years of diabetes although I do also have other things wrong. But I'm now back in a good place and that's what I aim to focus on, although not always easy. What I've learnt, if it helps, is to take one hour and one day at a time. Although it is not easy try to remember the things that make you smileif you are having a low point try to distract youself - it could be a nice glass of wine or doing some craft - I've just cheered myself up with some Decoatch, or talking to a friend/family or going on Facebook or...well anything that you can think of to distract yourself. Accept that there will be times that you feel down but try to find strategies to help you minimise these times - we will all support you on this forum. With regard to the pump - I went on mine in November because I have gastroparesis which was causing me real problems with BG control - and although it can sometimes feel frustrating - and sometimes annoying - the control it has given me in relation to injections has made me feel much freer than I did before even if the pump is attached to me 24/7.

 

[curlygirl]

Thank you for the replies - it means a lot that people have taken the time to respond.
I agree with the distraction technique and taking things one day at a time etc for sure - although it is sometimes easier said than done!

Kind regards.

 

[SOULBIRD]

I've been a type 1 diabetic for over 10 years, I'm 23 and for most of those years I have ignored my disorder feeling it was some huge burden I didn't want to deal with. I've recently realized though that I can't keep ignoring it and have to learn to live with it and adapt my life so I can manage and control my diabetes. So far i've been finding it some what difficult but I have found that taking chromium, a supplement available in most health stores has helped immensely. It's used to create serotonin in the brain and due to modern diets many people are deficient in it. I would suggest researching it first and talking to a diabetic nurse or doctor as chromium can have an effect on blood glucose levels (it actually helps balance them out) I discovered this information in Patrick Holford's book "The Feel Good Factor" It's an amazing book for anyone who is feeling slightly down and although it's not aimed for diabetics it mentions the condition a lot and explains why many diabetics feel depressed and not just because of having to live with their condition but he also explains how diabetes causes hormone and chemical imbalances leading to lower mood. I really recommend ready it x

 

[HOBIE]

T1 for 47yrs & on a pump for more than 5yrs & would not give it back. Nothings perfect but pretty good 🙂

 

[HOBIE]

Sounds good soulbird. I will look it up

 

[trophywench]

Hey - commiserations - I was 22 when I was diagnosed too! - at the end of July 1972 and here we are 41 years later - where the hell did that go? - you get less for murder mostly these days, don't you?

I think a lot of you would do very well to read the following

http://www.diabetes-support.org.uk/info/?page_id=50

and click on the link to the '5 stages of grief'.

I know you aren't newly diagnosed but believe you me when Kate originally pointed me at that excerpt, when I was 35-ish years in, it helped me no end.

She was talking about me in various situations including getting diabetes and losing my parents, which is how I was able to recognise that I had never grieved properly or long enough for any of them.

So I did that. It really really helped - after I came out the other end. Plus I actually sought and got professional counselling, which you can do via the NHS or if you can afford it, do it privately because you can get to it quicker. Or see if your workplace has a counselling service hidden away in it's Employee benefits, or possibly your Union if you are in one, or as an add on to any other thing you may have subscribed to. Mine was CBT based and though they don't give you a solution, there's no magic bullet - I landed up knowing a lot more about myself and the way I react, and able to recognise how other people react to how I react - OK not all of what I learned about ME was exactly complimentary, so you have to gird up your loins, be prepared for that and then ask yourself do I need to change the way I react, or am I right and everyone else can just go hang? but hopefully I finished up older and wiser.

 

[Copepod]

I've been a type 1 diabetic for over 10 years, I'm 23 and for most of those years I have ignored my disorder feeling it was some huge burden I didn't want to deal with. I've recently realized though that I can't keep ignoring it and have to learn to live with it and adapt my life so I can manage and control my diabetes. So far i've been finding it some what difficult but I have found that taking chromium, a supplement available in most health stores has helped immensely. It's used to create serotonin in the brain and due to modern diets many people are deficient in it. I would suggest researching it first and talking to a diabetic nurse or doctor as chromium can have an effect on blood glucose levels (it actually helps balance them out) I discovered this information in Patrick Holford's book "The Feel Good Factor" It's an amazing book for anyone who is feeling slightly down and although it's not aimed for diabetics it mentions the condition a lot and explains why many diabetics feel depressed and not just because of having to live with their condition but he also explains how diabetes causes hormone and chemical imbalances leading to lower mood. I really recommend ready it x

Just wanted to welcome you to the forum, SOULBIRD. Please feel free to introduce yourself in Newbies section, as well as joining in any threads.

An interesting and thought provoking thread all round - thanks for starting, curlygirl. I'm another person who prefers not to have a pump (not that I'd qualify anyway) so that I have some diabetes free moments in every day.