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SquishyPicklesMum

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Type 1
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Hi everyone.

I found this forum and think it's a good idea for me to connect with people experiencing similar things and could offer and happily receive advice and guidance.

I had ketoacidosis at the beginning of September and was hospitalised for 2 weeks. The 1st week being in intensive care. I went into a coma. I cannot remember how it began and what happened. All I remember is not being able to breathe, feeling my soul float away and sk.elne asking me if I wanted them to brush my teeth!

Apparently when at hospital I tried to run away and they had to sedate and intubate me.

I woke up absolutely terrified and it was very scary.

When i became a little more with it the nurse looking after me told me that as soon as they got the rube out to put down my throat I got violent and told them I'd shove it up their rear end. Totally out of character for me.

I did have a "experience" whilst I was comatose. I got told I have to grow old with my boys (10 and 15)

I have neuropathy too. I'm badly affected in my hand and feet. It's gorribly painful but the medicine management team said i shouldn't be on the dose I am unless I had cancer!!!

It's horrendous and frightening and I am thoroughly frustrated that I can no longer do all the things I could do before September. Everything takes so long now.

The dwp have REDUCED mu PIP despite me sending them the change of circumstances as things are so much worse

They decreased it by 250. This means I only have 150 to spend on food for me and my boys. I have appealed but don't hold out much hope. My mental health is taking a battering having only just become more stable with my mh.
 
Welcome @SquishyPicklesMum 🙂 Sorry to hear you had DKA and are in such pain with neuropathy. Can I ask how long you’ve had Type 1? What insulins do you take and what was your last HbA1C?
 
I was diagnosed in 2008, just after.my son was born. I am on novorapid and levemir. My last hba1c was 120
I now have freestyle libre 2 sensor
 
Hi and welcome from me too.

Really sorry to hear that you had such a scary situation in hospital with DKA and that your HbA1c is so high. Is that sort of level (120) normal for you and if so, that will explain your neuropathy problems. Slowly reducing that should be a priority to prevent any further nerve damage and possibly reduce the pain you are experiencing. .

When do you take your Levemir and do you adjust the doses yourself or rely on your clinic to advise you? Do you carb count and adjust your NovoRapid for the meals you have or just inject fixed doses. With your HbA1c so high, I think perhaps you need more support with managing your diabetes. Have you ever been offered a DAFNE course?
It is great that you now have Libre on prescription as most of us have found that a real game changer.

I have learned most of what I know about diabetes and managing it well from the people on this forum so hopefully being here and asking questions can help you improve things too.
 
If things have got worse, then it seems wrong that they’ve reduced your PIP. The Citizens Advice Bureau is good at supporting people claiming benefits or appealing. Perhaps you could try them?

Your HbA1C is very high, as you’re no doubt more than aware of. You mentioned MH. Is it that that’s hindering you getting better control?
 
They decreased it by 250. This means I only have 150 to spend on food for me and my boys.
Pip shouldn’t be your sole source of income, are you getting all the benefits you’re entitled to if you’re not working? Check on entitledto.co.uk
 
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