Stuggling to cope

[captainscapegoat]

As yet undiagnosed reactive hypoglycemia/impaired glucose tolerance. Whatever it is, it appears to be on the Diabetes spectrum.
A year or so ago I was merrily chugging along when symptoms started.

Long story short: bowel problems, scans, specialists, drugs, side effects, 1 week without sleep, melting point, job loss, car loss, massive anxiety, Crisis Team called in, more drugs, more side effects, more anxiety, more specialists, more symptoms (this time indicative of diabetes), more tests, ALL CLEAR, I don't believe it, get a private consult with an endocrinologist, he suggests reactive hypoglycemia and wants me to have an OGTT then promptly forgets to refer me back to the NHS for the test.

Long sentence

So now I have: 2 GPs, both of whom run when they see me, a secondary care GI doc, a tertiary care GI doc, a mental health care team who I never see, lots of diabetic symptoms and an endocrinology secretary who doesn't answer her phone. Meanwhile, I'm sitting at home shivering, sweating, hungry and anxious.

What floors me is how much this WhatEverItIs has changed me. Before this, no matter what life threw at me, I dealt with it. I'd always suffered from depression, but it wasn't my master. Now I'm afraid to go out to the shops, afraid of the weather, anxious all day and have to take drugs to stop muscle spasms at night so I can sleep. I'm barely functional and without my brother's help I'd not be functional at all. Its like switch is flipped and anxiety comes raging out uncontrollably with the symptoms.

And I realise that I'm the one that has to change it, starting with diet, but feel utterly overwhelmed by the prospect, especially as I'll be on my own doing it and its my weakest area or I probably wouldn't be in this mess. At a time in my life when I am at my weakest (so far), I find I have to somehow become stronger than ever before.

And I haven't even got a diagnosis yet! How do you guys cope with this?

Sorry for the rant/vent. Got a rather invasive procedure tomorrow

 

[vic hill]

Captain
heck what a problem.
now only if you can afford it ,go to a chemist get the cheapest blood sugar testing kit plus 25/50 testing stips or order on line
GLUCO/RX GO INTERGRATED BLOOD GLUCOSE monitoring system TD -4283 .
is the one i use as back system or any make will do cost 25/30-00 pound s
you can then do 4 before meal finger pricks per day write down results this will tell what blood sugars are if over 10/12 will best to check further with a nurse
maybe 5 days this will rule diabetic in or out
but you may be already doing it
CRAZY IDEA BUT MAY WORK if not diabetes spec nurse at hospital/or doctor s clinic
VIC type onion insulin

 

[leahkian]

I think they way they have treated you is terrible and you should not stand for it you should phone your local health district and tell them what has been going on and the lack of any support. If they do not do something then get in touch with PALS as they will act for you. You could also tell them about the two doctors as once they get involved things seem to get done quicker as i have had personal issue which they have solved. There is one last person you could try is your local MP because they like nothing more than a good news story to boost them. I hope you get sorted out asap.

 

[Prem51]

So now I have: 2 GPs, both of whom run when they see me, a secondary care GI doc, a tertiary care GI doc, a mental health care team who I never see .
Meanwhile, I'm sitting at home shivering, sweating, hungry and anxious.

What floors me is how much this WhatEverItIs has changed me. Before this, no matter what life threw at me, I dealt with it. I'd always suffered from depression, but it wasn't my master. Now I'm afraid to go out to the shops, afraid of the weather, anxious all day and have to take drugs to stop muscle spasms at night so I can sleep. I'm barely functional and without my brother's help I'd not be functional at all. Its like switch is flipped and anxiety comes raging out uncontrollably with the symptoms.

And I haven't even got a diagnosis yet! How do you guys cope with this?

Welcome to the forum @captainscapegoat. I'm sorry to hear about all the problems you are having. It's ok to rant/vent on here, we try to support each other as much as we can.
There's not much I can suggest about how you deal with the undiagnosed condition. Hopefully you will get a diagnosis and appropriate treatment soon.

I just wanted to ask if you are receiving any treatment for the depression and anxiety. I have coped with depression for over 50 years, and now stay on medication permanently. I don't think I could have controlled my Type 2 diabetes if I was overwhelmed by the sleeplessness, darkness and bleak thoughts that come with depression.
You say you have a mental health care team who you never see. Could you try putting some pressure on them for support?
Medication and/or counselling can help.

I know it's difficult to get any mental health support from the NHS, despite Government claims that they will give it more priority. I never got any counselling or other one to one support, but the medication does help me function.

 

[lindijanice]

Thinking about you, Captain and trust that you are feeling a bit better today. It really is one day at a time with all that is going on - can be so overwhelming at times - especially with many issues needing to be addressed all at once - take a deep breath - be your best advocate - ask questions, ask questions, ask questions until YOU are satisfied with the responses from the medical team... Blessings/L

 

[captainscapegoat]

Thanks for the replies. And good wishes, much appreciated.

Was just venting. Really, the professionals do the best they can with very little resources. GPs just don't seem to be interested if your blood sugar doesn't register on the scale.
Funny thing is, I fought the NHS for retrospective funding for my Mum's care for four years and managed to get 2 lots of funding. I think they had a dart board with my face on it at their office. But that was when I was well. These days, I just don't have that mojo.

I've contacted the specialist's secretary today and she's re sending the letter to my GP for the OGTT.

But really, its going to be up to me help myself. I'm just having a hard time over making diet modifications (as you might see from my other posts on here). The keto diet looks so extreme for anyone let alone me and I'm stressing over trying out LCHF due to the side effects and ending up in low carb limbo (if not doing keto).

 

[GIBBO1968]

feel ya, if you have a day some hrs , or half a day when you feel ok. and r thinking straight. really go for it and do the bits you enjoy & need to do. .. and enjoy feeling ok. even if its shortlived. . its lived.