Hey all. I'm a partner of T1 :)

[Lauraj38]

Hey everyone.
I've finally decided after reading for a long time that now is the time to Say HI.

I'm Laura. I'm 27 and I live in Edinburgh with Mike also 27 and 6 years post diagnosis of T1.

He is already suffering neuropathy has regular DKA and is under investigation for Gastro Paresis.

He has had very poor management since diagnosis (it did improve when we got together a year ago but it appears that was too late).

I'm now really struggling to cope with holding down a full time job and being his carer.

I look forward to meeting you all. If you have any questions please ask away I don't bite and I'm hear for help x

 

[Bingki Rose]

Hi Laura,
Its never to late to improve management and even though the complication may never go, it can be improved
At 21 I was 5 1/2 stone, oulcers down to the bone on my legs, muscle wastage in my legs which ment I couldn't walk for 2 years and nerve damage in my legs and stomach. I am now 33 and work part time as a carer, it took along time in recovery to get where I am now but never say never!
Its hard living 24/7 having to keep good control and we all have our off days, none of us are perfect but if control doesn't improve then more and more complications are going to happen and at 27 there is no reason why the smallest of improvements cant make a difference.
I wish you both luck x

 

[Daibell]

Hi. Can you let us know whether his management is just lax or whether he just doesn't care and won't do the right things for his diabetes. Will he take advice from you? Has he seen the nurse recently, had 6 monthly checks etc? What insulin regime is he on i.e. Basal/Bolus and has he tried to get it balanced? Does he check his blood regularly? What is his diet? So many questions but all relevant to hopefully helping him in some way.

 

[Lauraj38]

Hi carb counts 1-10 and corrects with Novo rapid and takes lantus one a day (is that bolus?) He isn't as stringent as I would like him to be and it appears even his corrective is very high.
His quote when we first me was I can eat what ever I want as long as I take insulin for it.

(This I now know is complete twaddle)

 

[azure]

Hi Laura

He's lucky to have you supporting him. Diabetes is hard work. Do you know his last HbA1C result? This would have been done at the surgery or hospital. Or if you're not sure of that, then what kind of results does he get when he tests his blood, and how often does he test it?

The Lantus is the basal insulin, the bolus is the fast acting insulin he takes before meals.

 

[Lauraj38]

His HbA1C was 92 and that was taken about a week ago. He has had 5 DKA or Near SKA in 9 months x

 

[urbanracer]

Hi carb counts 1-10 and corrects with Novo rapid and takes lantus one a day (is that bolus?) He isn't as stringent as I would like him to be and it appears even his corrective is very high.
His quote when we first me was I can eat what ever I want as long as I take insulin for it.

(This I now know is complete twaddle)

Twaddle? Actually it's pretty standard NHS spiel. And many T1 diabetics do exactly the same thing.

However it does rely on one's ability to count carbs and inject insulin with the correct ratio. But many folk (myself included) find it easier to manage diabetes with a moderate carb intake.

 

[Lauraj38]

Fair enough I've just received some very mixed messages over the past year

 

[azure]

His HbA1C was 92 and that was taken about a week ago. He has had 5 DKA or Near SKA in 9 months x

Ok, that HbA1C is quite high, but I guess the doctor mentioned that anyway. The 5 episodes of DKA are obviously worrying. Has any reason been suggested for the amount of these? (Eg other health issues)

 

[Lauraj38]

They are leaning towards and testing for Gastro paresis. Other than that no

 

[azure]

If it is Gastroparesis, that can make controlling your blood sugar harder. That must make it very frustrating for him.

 

[noblehead]

They are leaning towards and testing for Gastro paresis. Other than that no

Should the results come back positive then his diabetes team may consider him for a insulin pump as this is said to improve control in those who have Gastroparesis.

He needs to get on a carb counting course such as DAFNE, if he asks his diabetes team about the course they will hopefully put his name down for the next available course, but in the mean time he could complete the following which is an on-line version of the course:

http://www.bdec-e-learning.com/

If possible get him to join the forum, he'll find it extremely useful as its a great place for advice & support.

 

[Lauraj38]

Thanks for that e-learning. I will certainly go through it. We both have our names down for DAPHNE but we need him stable. We have dicussed a pump and he is more than happy to try it it's just getting to the bottom of it all. And trying to make a decision as to work. Luckly his boss is very understanding but even his dad can't keep his job open forever c

 

[donnellysdogs]

Basics are that there are ways to control diabetes for T1's....

But first, well done you for caring and taking the initiative to find out more.

Type 1's on MDI are told they can eat anything providing they take insulin.

However what your partner has interpreted is from the NHS talk..and it needs a little more added...

Persons on bolus/basal regimes must be able to count the carbs correctly and have their bolus ratio's correct.

If your partner has had numerous accounts of DKA then something is way out of line....

Does your partner test every morning, pre meals and 2 hours after meals and before bed? This is the basic requirements for a T1.

And, does your partner vary the insulin (basal or bolus) depending on activity or what foods he is eating.

As a basic starter the above is what he needs to be doing.

Pumps are not generally handed out to people that have had episodes of DKA... However, there are exceptions to the rule. You must test as above if on a pump and you must be able to adjust insulins which is why the DAFNE course is a prerequisite to getting a pump.

Has partner had a shapes test done? This shows how fast food travels through to the bowel. He would need to have this done thru a gastroenterologist. Most (I think from this forum at least) that suffer from slow colonic transit or gastroparesis have found ways to manage it. I can't eat any bread, pasta, rice, celeriac and currently also finding that meat is bad too. There are ways to manage stomach problems but some find they have to liquidise foods. Some like me with SCT have to limit foods but still very much love the foods I can eat.
Some take meds to help, some take flaxseed ir flaxoil (in U.S).

Well done for caring enough to reach out to this fabulous community.

Gastroparesis can cause levels to raise around the times of peoblems with stomach and bowel... A pump wouldn't know automatically when those times occur. It is a case of watching how often you have bowel movements and trying to keep them regularised with the foods you eat initially, moving onto meds perhaps. Diet plays a huge role though.