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I don't know what I'm writing this for...

N

Noodle85

Newbie
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2
Hi

I was diagnosed 6 years ago with a host of other autoimmune diseases. I have had test after test, poked, prodded and had to fight to be heard.

I am done, my head feels like it wants to explode. My body's tired, I am tired, I just want to stop the roller coaster and get off now. I am depressed, I have had counselling but it's only general counselling because I fall into so many categories due to the multiple conditions which impact onto each other.

My family don't understand, my wife like myself is a nurse (both diabetic link nurses) and yet she gets angry when I am on my downward spiral. I feel so alone and yet so loved by everyone around me.

I don't know why I'm writing this but yet sobbing at my desperate attempt to hear I am not alone.
 
Hi, welcome

yep totally alone!

…well apart from having autoimmune issues, feeling depressed, test after test? Yeah maybe we’ve all been doing that, fighting to be heard? Oh Ya. Your family don’t understand? I could write a book! Ok apart from me not being a nurse I got everything else.

If it were easy everyone would be doing it, vent away bruv, you get a sticker if you can come up with something we collectively havent had, done or been
 
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Hi @Noodle85 ,

Welcome to the forum.

let’s start with the basics. What type of diabetes do you have? How (if you are diagnosed.) is it treated?
Not so ideal BGs can put someone in a negative place.

The positive is you don’t feel abandoned by your close ones..

The climb can be arduous. But the view from the summit will be exhilarating.
 
Hey, @Noodle85 . Welcome.. By coming here you will find you are not alone.
My guess is that you wrote this, to seek out others in similar circumstances. You will, but first, do as Jaylee has suggested and give us some basic info. Support and empathy will follow from that.
 
So...6 years ago what they thought was sepsis was actually Spontaneous Angioedema and Urticaria (like anaphylaxis but my body is just allergic to its own histamines) whilst in hospital they said I'm diabetic, hypothyroidism, liver disease and my gall bladder had started to break itself down. Initially type 2 diabetic because I had gestational diabetes with all my pregnancies. After multi attacks and LOTS of steriods they transferred my care to an immunologist. Antibody tests was done and I had very high antibody count which indicated type 1 (I'm still very confused) I'm insulin dependent and libre monitored.

My angioedema means I have to take steriods regularly, and I have injections every 2 weeks to control this. All my medications either react with each other or my body rejects it leading back to another angioedema attack and more steriods.
 
Wow, @Noodle85 , you certainly are having a tough time.
I can identify with some of that, particularly the angioedema, anaphylactoid reactions, urticaria, gall bladder problems, and GD, during pregnancy. The steroids, I used to welcome as the only relief, but the high dose brought other problems.

It took many, many years to get some sort of control of my life back. I still have restrictions, but, thankfully, haven’t needed high dose steroids for a couple of years. I can generally work out what triggers the anaphylactoid reactions, and avoid the triggers. The most helpful thing for me was getting a proper diagnosis, and medications, from the immunology team. Although the consultants were good, I was passed around several departments before a solutionnwas found for me. The most helpful person was the immunology specialist nurse. She had more time, and lots of experience of helping with the emotional and practical aspects of the rare health condition. People, even clinicians, don’t always have an understanding of rare conditions. I know I often offended people by refusing invitations to events, or cancelling at ladt minute due to the unpredictable nature of my health conditions. I wonder if your immunology has a specialist nurse who could support you, and help your family to understand your life limiting conditions?

More recently, I have found this website to be very helpful:
https://healthunlocked.com/
When you have more than one health condition it can be overwhelming to try to control them all. I took the approach that the one that caused me the most grief, the anaphylactoid reactions, needed the most attention, but, I don’t need insulin to control my diabetes. So we each need to find our own pathway through.

I hope you can find your pathway, and people to help along the way.
 
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