Struggling with new diagnosis

[xClaireyMac1888]

Hi, folks. I’m Claire.

I was rushed to hospital September 30th 2021 and was diagnosed with Type 1 three days later on October 3rd. I had severe DKA and almost didn’t pull through.

I was in denial about my diagnosis. I thought the doctor would come back and tell me he had made a mistake. Even though I was struggling to accept it I still done what they told me. I learned to inject myself, use my Libre 2 sensor etc and I discharged. Everything was going well.

fast forward 4 months and I am struggling physically and mentally. I have serious complications from the diabetes. My sugar levels are under control but everything else is not. I have neurological problems. Pins, needles, numbness in my feet and legs, also my hands. I’m struggling to walk, my feet are swollen, I keep dropping things, without pain medication every nerve in my body is so painful that I am in tears, and I have a very high pain tolerance as I also have McCune albrights syndrome. But this pain is something else. I have problems also with my digestive system, everything I eat gives me diarrhoea. I have been referred to the gastro clinic. I also have cataracts in both eyes that require surgery. Currently wearing glasses that only work a little. My memory is foggy too. I see my Diabetes nurse on March 31st for the first three month consultation.

I feel like I have been given a life sentence. I didn’t think I can do this. I’m beginning to wish I didn’t make it that morning I was rushed to hospital.

 

[Daibell]

Hi. What other meds if any are you taking?

 

[Jo_the_boat]

Hi
Sorry for your troubles. It sounds horrible.
I suggest you need to try and see someone before 31st March.
Can you go back to your doctor (or whoever you are under)?
Best of luck

 

[TriciaWs]

Coming to terms with diabetes can be hard for anyone, but you had a very difficult start. I agree you need to tell your new diabetic team that you need more support now, not at the end of March. Hopefully they can help you with the adjustments your need to improve your health and deal with the pain.
I found my neuropathy felt worse as my blood sugar decreased, but it did settle down (I am on pregabalin for neuropathy/restless legs syndrome).

 

[jjraak]

Hi, folks. I’m Claire.

I was rushed to hospital September 30th 2021 and was diagnosed with Type 1 three days later on October 3rd. I had severe DKA and almost didn’t pull through.

I was in denial about my diagnosis. I thought the doctor would come back and tell me he had made a mistake. Even though I was struggling to accept it I still done what they told me. I learned to inject myself, use my Libre 2 sensor etc and I discharged. Everything was going well.

fast forward 4 months and I am struggling physically and mentally. I have serious complications from the diabetes. My sugar levels are under control but everything else is not. I have neurological problems. Pins, needles, numbness in my feet and legs, also my hands. I’m struggling to walk, my feet are swollen, I keep dropping things, without pain medication every nerve in my body is so painful that I am in tears, and I have a very high pain tolerance as I also have McCune albrights syndrome. But this pain is something else. I have problems also with my digestive system, everything I eat gives me diarrhoea. I have been referred to the gastro clinic. I also have cataracts in both eyes that require surgery. Currently wearing glasses that only work a little. My memory is foggy too. I see my Diabetes nurse on March 31st for the first three month consultation.

I feel like I have been given a life sentence. I didn’t think I can do this. I’m beginning to wish I didn’t make it that morning I was rushed to hospital.

Hi @xClaireyMac1888

What a terrible moment .

And my goodness You have through the mill, in no uncertain terms .

I'm T2D..so can only sympathise from the sidelines.

However, I have seen many T1's responding to such posts with sensitivity & sensible suggestion

Can only see benefit to Sharing on here

It's full of caring, living people.
Who just happen to have diabetes in common, but many will have others issues.

Bound to be someone come along soon who has had a very similar moment or experiences to relate to you better.

Many type ones have inspired me..

The efforts many make to turn living with T1 as normal as possible, puts me to shame at times when I whine about minor ailments.

Bowing out here, just wanted to bump your post and wish you all the best

 

[Fenn]

Hi, you are very entitled to feel rubbish as you’ve been through it and are going through it still, I am not clever enough to offer any useful advise, maybe the fact your sugars are better now could be making the pain worse and things will get better? There’s so much the medical people know now and more every day, nothing is a life sentence at your age, you have to try and stay positive.

I totally understand despair, been a rough couple of years for me too, if I wrote down a list of rubbish stuff no one would believe it but we don’t fail when we lose, we fail when we give up! So don’t give up!

You deserve a break, keep reminding yourself how amazing you clearly are, wishing you everything you wish for yourself, keep posting, I can’t wait for your good news.

 

[AndBreathe]

Hi, folks. I’m Claire.

I was rushed to hospital September 30th 2021 and was diagnosed with Type 1 three days later on October 3rd. I had severe DKA and almost didn’t pull through.

I was in denial about my diagnosis. I thought the doctor would come back and tell me he had made a mistake. Even though I was struggling to accept it I still done what they told me. I learned to inject myself, use my Libre 2 sensor etc and I discharged. Everything was going well.

fast forward 4 months and I am struggling physically and mentally. I have serious complications from the diabetes. My sugar levels are under control but everything else is not. I have neurological problems. Pins, needles, numbness in my feet and legs, also my hands. I’m struggling to walk, my feet are swollen, I keep dropping things, without pain medication every nerve in my body is so painful that I am in tears, and I have a very high pain tolerance as I also have McCune albrights syndrome. But this pain is something else. I have problems also with my digestive system, everything I eat gives me diarrhoea. I have been referred to the gastro clinic. I also have cataracts in both eyes that require surgery. Currently wearing glasses that only work a little. My memory is foggy too. I see my Diabetes nurse on March 31st for the first three month consultation.

I feel like I have been given a life sentence. I didn’t think I can do this. I’m beginning to wish I didn’t make it that morning I was rushed to hospital.

Clairey, do you have a contact point with your diabetes team? (I am assuming you are cared for at a hospital?)

Assuming you do have hospital outpatient care for your diabetes, I would suggest making contavt with them. Every diabetes clinic should have a psychologist experienced in, if not specialising in working with people living with diabetes. It sounds like you could benefit from some support.

As I understand it, for your McCunes you are likely to be under the specialist care of one or more speciliasts - Endo, Orthopaedic or Dermatologist, depending on how you are most impacted. If so, does that person (or those people) know of your diabetes diagnosis?

If you have not seen anyone about your McCune's since diagnosis, please try to get an appointment with them - even if it is by telephone. In an ideal world, our medical teams would consult with each other and stay in the loop, but that's not always (or even often) how it goes.

I would think you could benefit from a multidisciplinary approach.

I do hope you can find some decent help soon. This forum cannot be a medical resource, but it can be a wonderful support from others following similar paths.

 

[VashtiB]

Hi @xClaireyMac1888 and welcome,

You have really been through a lot- virtual hug from me. With all you have gone through and are still going through I am not surprised you are struggling. I also struggled at first and I am a lot older than you and went through a lot less than you have. You have my sympathy.

I am a type 2 so can't give you advice from my own experience but now that you have found this site I encourage you to read around and post. There are some amazing wonderful people here. I can honestly say that some of the most wise and compassionate people I have 'met' I 'met' here.

So read around and post. Seek help as suggested by @AndBreathe .

Please let us know how you get on.

 

[johnme]

Good luck Claire

 

[viki151190]

Hi, folks. I’m Claire.

I was rushed to hospital September 30th 2021 and was diagnosed with Type 1 three days later on October 3rd. I had severe DKA and almost didn’t pull through.

I was in denial about my diagnosis. I thought the doctor would come back and tell me he had made a mistake. Even though I was struggling to accept it I still done what they told me. I learned to inject myself, use my Libre 2 sensor etc and I discharged. Everything was going well.

fast forward 4 months and I am struggling physically and mentally. I have serious complications from the diabetes. My sugar levels are under control but everything else is not. I have neurological problems. Pins, needles, numbness in my feet and legs, also my hands. I’m struggling to walk, my feet are swollen, I keep dropping things, without pain medication every nerve in my body is so painful that I am in tears, and I have a very high pain tolerance as I also have McCune albrights syndrome. But this pain is something else. I have problems also with my digestive system, everything I eat gives me diarrhoea. I have been referred to the gastro clinic. I also have cataracts in both eyes that require surgery. Currently wearing glasses that only work a little. My memory is foggy too. I see my Diabetes nurse on March 31st for the first three month consultation.

I feel like I have been given a life sentence. I didn’t think I can do this. I’m beginning to wish I didn’t make it that morning I was rushed to hospital.

hi Claire, so sorry to hear about your struggles. I have been type 1 since I was 12 years old so coming up 19 years. I really feel what your going through, as a teenager I went through all sorts of depression and self inflicted hospitalisations due to no support at that time for diabetes and psychological support. 1 thing I want to ask is do you have any support at home? I didn’t and I think this is where my problems came from as I felt so alone…..also, do you know any other diabetics? One of my local hospitals offers a support group on an evening for people with diabetes…..also, I recently went to my hospitals Carb counting course and there were other type 1s there and I felt this was amazing as we all knew how each other felt etc and it was a feeling of knowing you arnt alone. They are a few options for you to research locally and I would definitely recommend attending one of the groups. You can get through this Claire, don’t let this diagnosis drag you down and please speak to your GP (preferably one that specialises in diabetes at your surgery) who could possibly speak to the diabetes team on your behalf. You’ve got this

 

[Michellescholes]

Hi, folks. I’m Claire.

I was rushed to hospital September 30th 2021 and was diagnosed with Type 1 three days later on October 3rd. I had severe DKA and almost didn’t pull through.

I was in denial about my diagnosis. I thought the doctor would come back and tell me he had made a mistake. Even though I was struggling to accept it I still done what they told me. I learned to inject myself, use my Libre 2 sensor etc and I discharged. Everything was going well.

fast forward 4 months and I am struggling physically and mentally. I have serious complications from the diabetes. My sugar levels are under control but everything else is not. I have neurological problems. Pins, needles, numbness in my feet and legs, also my hands. I’m struggling to walk, my feet are swollen, I keep dropping things, without pain medication every nerve in my body is so painful that I am in tears, and I have a very high pain tolerance as I also have McCune albrights syndrome. But this pain is something else. I have problems also with my digestive system, everything I eat gives me diarrhoea. I have been referred to the gastro clinic. I also have cataracts in both eyes that require surgery. Currently wearing glasses that only work a little. My memory is foggy too. I see my Diabetes nurse on March 31st for the first three month consultation.

I feel like I have been given a life sentence. I didn’t think I can do this. I’m beginning to wish I didn’t make it that morning I was rushed to hospital.

 

[Michellescholes]

Hi Claire, I totally understand how you are feeling and you are not alone. I was 17 years old when I was told I was type 1 and to be honest I was the worse diabetic ever. I was in and out of hospital for years and the damage I done by not taken my insulin really has had an impact in my life. I was didn’t want to accept this life sentence and I was very angry. It’s only been in the last year I have decided to accept this and try to get on with my life. I feel as though I was grieving but only now realise this. The only thing I can say is take each day as it comes and be proud that you have got through that day. It will be difficult and I wish I could say it’s not but don’t let it bet you. Don’t let diabetes rule your life stand up to it!! Sending love