Type 1 Struggling to Cope

[happydaze]

Hi there,

So a small concern at the moment is my vision - my yearly eye tests have been going downhill since about age 18. It has been progressing very rapidly in the past few days and I’ve managed to get an emergency appointment with the eye specialists tomorrow. It does feel good to be taking action...fingers crossed it goes well.

The major issue that isn’t so positive is my mental state. Every few months I am handed a new bag of problems regarding my diabetes that I’m just not prepared for. I can tolerate a lot of issues, but I believe I will be strong enough to make it through... I’ve made it this far already.

Suicide feels like a very valid option down the line, but I would not make the decision impulsively. Feels more like thoughts of clarity than anything else.

I can cope with pretty much any of the complications of diabetes that I currently experience (or may experience in the future) - Cognition, limbs, kidneys, impotence... it could always be worse right? But for some reason blindness isn’t something I think I can get through. The thought of not being able to see my daughters face ever again is seriously messing with my mind.

Perhaps after writing all this it seems I am just stacking up more problems than I need. Trying to just be patient until I can get some answers/ relief from the medical professionals.

If you made it this far then thanks for reading.

 

[Diakat]

Hi @happydaze
You have an appointment which is good.

So - how long have you had diabetes?
Have your annual eye tests been clear of retinopathy and other issues?

How is your control in general?

 

[happydaze]

Hi Diakat yes I’m trying to stay focused on the positive.

T1 for just under 23 years. Childhood and teens were very poorly controlled, wasn’t until around 18 that I decided to come to acceptance and take care of myself.

Background retinopathy started at around 19 in one eye, the next year the other eye and now I’ve got signs of maculopathy as well. Always had good vision, but now I’m starting to get all the common symptoms (floaters, black parts of my peripheral vision, and flashes of white light with my eyes closed)

Also, would just like to send out my appreciation to you and all the others that help contribute to this site/community! <3

 

[Diakat]

Thank you. It’s the members who make the forum such a great place.
Speaking of members @Dark Horse may have some advice regarding eyesight.

 

[happydaze]

Thanks for the recommendation. I will see how the appointment goes tomorrow and then try to reach out.

 

[Diakat]

How did it go today @happydaze ?

 

[happydaze]

Hey again! Hope you’re well

Pretty much all positive - I’m doing much better mentally and my nerves have calmed down. The eye specialist was really nice and informative. Obviously I’m going to have to wait for the doctor to discuss in depth. If it’s serious I’ll get a response very soon, so no news is good news for the time being haha.

Still an underlying worry just because of the periodic symptoms, but apparently only missing one year of eye tests (one appointment every 6 months) is not enough to cause a great concern. As long as I keep up with everything I should be okay.

Extremely grateful for your support! If there’s a way I can return your kindness let me know

 

[Diakat]

Good to hear that the appointment went well. Just look after yourself.

 

[kitedoc]

Hi @happydaze, apologies for the late reply, i could say that being in Australua we are behind the rest of the world but...
I cannot give you medical advice or opinion but wish to let you know that others have faced similar troubles and have been able to reverse some or all their diabetes complications.
There are no guarantees but it has happened
And a caution that nature can be perverse. When these TIDs and other diabetics have pursued excellent bsl control, their diabetic complications actually got a bit worse in the first 12 + months before improving and for most, reversing completely.
That leaves you with asking your endocronologist/diabetes specialist and DSN, what is best to do.
.1) ? Moderate bsl improvement hoping to avoid worsening of complications with gradual tightening of bsl control, or
2) just go for the tightest control possible, cop any perverse worsening of complications and sail on through.
3) I take it you do not wish to take the third option of just sailing on as is.
To help you in considering 1 and 2 you are some choices to make:
A) look at the Home page of this site and under Type 1 diabetes look at all the diet options and read about them
B) note that none are currently recommended over the other by the Type I UK ((NICE) guidelines , except some throw away line about glycaemic index (GI) but with nothing to back it. You can google each form of diet to see what it entails, how it compares to your current diet.
C) in such a process you might like to obtain and read the book or e-book Dr Bernstein's 'Diabetes Solution' and see how that compares to the other information you have found.
I say all this because all us diabetics are on a diet of some sort and in a nutshell for TIDs i reckon it is balancing diet with insulin, exercise and stress that results in how our BSLs and health fare.
This is a possible start to you finding a way to improve things, step by step and not having to feel that ending it all is the only choice.
I do not wish to be mysterious but showing you a road and saying you have to take it is both rude and ineffective.
From this start, reading, asking questions here and of your health team you have an opportunity to find a way.
I too have been depressed on my so far 52 year journey on insulin. It is real, brutal and jarring at times. Implacable, a real so and so, and then there is the diabetes as part of the burden.
Though each person's journey is different, there are many crossings with others and each is an opportunity ( the Chinese word for crisis is opportunity), so even bad news is only half the truth.
The brains' trust here on site (and mine is lost in there somewhere)! can help suggest what helps and how. There will be varying views, possibly from your specialist and DSN also, but it gives you a chance to find the best fit for you, knowing that as you proceed you can alter, tweak, change things to obtain the best solution for you.
I shall weigh in later with my own story but for now it is like you are choosing a new house to live in. You need to compare various abodes, pluses and minuses, see what the realtors say etc etc. you can move house later but finding the one that suits best, the best diabetes regime, is a good start and the least regrets.
Best Wishes
".........................most things..... nothing is........it us all about
".......................are possible...... impossible........balance

 

[happydaze]

Wow...First off let me thank you for all those words of reassurance! Hell of a read but worth it.

I’m definitely no stranger to lifestyle and diet (studied nutrition, exercise daily, and years of self experimentation) so I appreciate a lot of what you have said but I am aware of a lot of it already. I’ve been very pro-active in the past regarding insulin sensitivity, endocrine system, and just about anything that effects blood sugar and wellness - holistic style. The issue doesn’t tend to be the knowledge it’s the application that I struggle with. If I’m in a depressive state/episode then forget about it!

However, the part that I’m really happy to hear/learn is the part about symptoms becoming worse despite better control. This is where I am now. Single figures all day but still some funky eye stuff going on. Option 2 would be ideal, but am uncertain how tight is tight control. The best I’ve ever had in my life was staying between 4-8mmol consistently for about a month straight. This was insanely difficult and took more time and mental energy out of me than a 2 full-time jobs and raising a child! Definitely can’t see myself getting to that point again unless I want to become a hermit and have no life hehe...

I can’t lie I do have my bad moments/periods (I am only human) but generally speaking I do put a lot of effort into my management.

Love your attitude mate! If you want to start a personal chat for a friendly/informative discussion I’m sure there are many things I can learn from you (if you are willing to share)

Best wishes right back at you

 

[kitedoc]

Glad to hear that you are well versed in nutrition and lifestyle @happydaze!
Would love to chat but cannot right now and give it full justice.
I can PM you (letter icon right top of forum screen) in about 8 hours or 15 hours from now! Time zones, grumble! grumble!
I am going out with some diabuddies for dinner (and no drinking) and not sure when before midnight I shall be home.
8 hours is late evening and 15 hours is tomorrow morning here.
Keep your non-alcohol spirits up !!
Best Wishes on rebound !!
Keep cool

 

[happydaze]

No rush Mr. Kitedoc - my diabetes isn’t going anywhere anytime soon!

Have a good night, will speak to you whenever it happens

Peace

 

[bmtest]

I do not think you are the only one who worries about blindness many on this site do it's one of those things if it happens it happens but the most important thing you can do is try to reduce any chance of it by good control.

At the moment you seem to be torturing yourself with the thought of it, try to think more positive the older you get you realise so what if I do. I think of it like this if I went blind I would be that busy learning brail thinking of guide dog and moving the white stick side to side it would be just another challenge and as to seeing my kids its no big deal I see enough of them and the mental image would be strong in my mind and the rich tone of there voices would be enough. As for being out and about once you have seen one city you have seen them all in uk all the shops are duplicated in each town.

I personally do not even bother with the diabetic retina check ups the last one was over 10 years ago I rely on the specsavers equipment that shows the worry I have on the subject again the younger you are the more you likely to panic yourself.

Try doing some charity work with the young disabled units and you will realise you are quite well off.