Complications Burnout

I have another foot ulcer. Same Place. Same reason.

The picture above shows the issue.

Second toe from the right (next to the “Big Toe”) is dislocated 2^nd joint and the bones are pointing down (hence the shortening of the toe) causing pressure every step I take of every single day.

Basically, I wear a hole in my foot. This is the third time it happened. There very likely be a 4^th, 5^th, 6^th……. Who knows?

The story of my first two ulcers is well documented along with the gory pics.

This one won’t be.

Once the first two ulcers had healed, I reflected and realised that I had burned out due to the almost 2 years of treatment and that had taken several months to manifest and lasted the rest of the treatment.

Today I realised that I was already burned out with ulcer number 3 and the prospect of months of treatment and the certainty (in my head) that this will keep happening and there is no end game.

Breaking down in tears literally begging my podiatrist for surgery to remove the dislocated bones was not the subtlest of indications of my burn out I know.

At EASD leas week I attended a workshop about the FDA Rescue research on self-harm and suicide in people living with diabetes. I have not seen the data but I wonder if and how much diabetes related complications factor in these cases.

Please, please, please continue to #TalkAboutComplications

Grumps.

Drawing a Line

I’m going to spare you the pictures this time, but after almost 3 years of foot issues and treatment, my (in the words of my Podiatrist) foot looks good!

Well, not pretty, but it never did. The scar is a feint one now and the affected toe has curled a bit, looks shorter and the only toe I can now move on that foot is the “Big Toe”.

I will still need to wear special shoes and have preventative treatment once a month for the rest of my life, but I can live with that. It’s just risk reduction, I do that every day. More so in these Covid times…..

I have learned many things from this experience. Some about feet and wound care, some about myself, how I deal with things and what situations I cope best (and struggle) with. I think the most important things I’ve learned are:

• It’s not “only a blister” until an HCP tells you its “only a blister”
• Self-management is ok. Self-diagnosis really isn’t!
• Every foot issue has the potential to be a serious one. Swift treatment will often stop it becoming one.

So, for now this challenge is over. It’s time to move onto the next one. No rest for the wicked hey?…..

This chapter is closed, I’m drawing a line under it……

Choose whichever metaphor you want.

After 3 years. I have closure.

I finally have closure.

Live Long and Bolus

&

Please check your feet daily!

Grumps.

Tick List

The first 25 years of my life were pretty uneventful health wise. The next 25 not so much…

• Type 1 Diabetes
• Foot ulcer x 2
• Bone infection

So, I’m due a break. Right?

Well, apparently not.

Today I got my next official diagnosis of Sarcoidosis.

Sarcoid what?

If you want some info is here.

I’ll give you the highlights

To some of you it may sound a bit familiar……

“Sarcoidosis is a rare condition that causes small patches of red and swollen tissue, called granulomas, to develop in the organs of the body. It usually affects the lungs and skin.”

“There is currently no cure, but symptoms can usually be managed with medicine.”

“It’s thought that sarcoidosis happens because the immune system has gone into “overdrive”, where the body starts to attack its own tissues and organs.”

Yep! It looks like my good old immune system has been on a drinking binge and once again I’m the target of its friendly fire.

Ah well. I’ve been here, done that. I can do it again (and let’s face it I have no choice).

Having said that I’ve done this before, I have learned from how I did things 25 years ago with my T1D diagnosis.

This time:

• I got treatment sooner.
• I’ve taken time to understand the basis of the condition and treatment.
• I’ve found the organisations and charities.
• I know there is a community out there of peers that have lived experience and that I can talk to them when the time is right. For now, I will just lurk and learn.

I also have may learnings from my time managing my other conditions.

I will have a new team of HCP that specialise in respiratory conditions. I need to build relationships with them. I also need to join up my care between clinics and HCP’s. This new condition can affect my kidneys and T1D increases my risk of kidney issues too. The steroid pills I may have to take can also affect kidney function and blood glucose levels. So, I need to ask the right questions at the right time to make sure all is considered and joined up. I still believe that the only way that I will get true patient centred care is if I manage and drive it myself, using my consultants as the subject matter experts on the clinical side. I am the only constant, the only one in every clinic appointment, I am the one at the centre.

CT scan results if you like detail:

• Lymph nodes in the centre of my chest between the lungs
• 5mm node in the right lung
• Liver, kidneys and pancreas clear
• Blood tests booked to monitor kidney function (it dropped right off recently but has started to recover.
• Home monitoring of blood pressure and recorded for two weeks then review (one of my BP pills can cause kidneys issue so we agreed that I should stop taking it) so we can get my BP back in range.

Strange irony of lockdown is that all the appointments, test and scans needed to diagnose this have been faster than I’ve ever know due to hospitals and Dr’s surgeries having to postpone routine appointments. Also, that if I’d not have been locked down, I would probably have seen myself as too busy to call the GP. I’d have just struggled on.

There we have it. Another condition added to the tick list.

That’s enough for me now. Isn’t it?……..

Live Long and Bolus.

Grumps.

Old Oak Tree

This week is ‪#MentalHealthAwarenessWeek

My own mental health is something that I have only considered in the last few years.

I never felt that diabetes impacted me in that way. I never felt burned out, I just kept going.

Only months into the treatment of my first foot ulcer did I start to feel burnout. The ongoing and increasing treatment. The ongoing and increasing severity and bad news.

Then it really hit home when the second foot ulcer came along. There were days when I could not face sitting down, preparing and taking yet another dose of IV antibiotics and I will admit that, once or twice, I did omit a daily dose. Irresponsible? Risky? Stupid? No. Just me doing the best I could on that day given the place my mental health was at that time.

Growing up in the 70’s and 80’s, mental health was not considered. In fact it was pretty much a dirty word…..

Weak people got stressed. “mental institutions”, “mental asylums” were terms used for the places that people needing help were “sent”. Terms such as “nutter”, “psycho” and “mental” were used as school were used to ridicule and at time bully people.

The only time mental health was in the news was if a criminal’s profile described them as a “paranoid schizophrenic”, or “mentally unstable”.

Mental health was always negatively depicted, and the stigma was huge. Even then, #LanguageMatters. It always has. It always will. Poor language doesn’t just allow stigma, it teaches it.

Fortunately, things have changed a lot and I have learned.

I have learned that however I feel I don’t need anyone to fix this for me. I just need them to listen and offer no solutions. I am truly thankful for the person that know me so well that they can do that for me.

I have learned that for this to happen, I need to be honest with them, but the hardest part is that I need to learn to be honest with my biggest critic. The only person on this planet that I will allow to judge me. That person is the one I see in the mirror every day. Me….

Back in my youth you were told to be strong. To man up. Men don’t shed a tear. Like some strong old oak tree standing storm in the storm.

Well, oak trees move. They bend and sway. They even shed a branch or two. Because if they don’t, they fall.

Live long and bolus.

Grumps.

Bad Habits

When I was diagnosed I did everything by the book. It was restrictive. Fixed carb loads and fixed insulin.

As time went by my regime changed to MDI, then in time to using an insulin pump.

I’ve heard people say they don’t want to use a pump because they worry about putting on weight.

I did exactly that. I got heavier. Not because of any medical side-effect of excess insulin, nothing technical. Simply that giving myself insulin was so easy I’d snack more. When using MDI I couldn’t be bothered with the hassle of doing injections each time so often I’d snack but only once in the evening. The freedom of a pump gave me the freedom to snack when I wanted. Which was a lot!

And now?

Now I’m trying out Loop, and like many others that have, I wake in range every single morning. Which is great! I don’t need to work on my BG is before I go to bed. Awesome, right?

Yeah, but nah…..

The snack is back!

I’m eating more snacks than ever.

I’ve blogged recently how I need to look after my heart so this needs to stop.

Technology is amazing and helps me live my life with diabetes more freely. I just need to be careful how I use that freedom, and make sure I’m around to do the things I have planned.

Live long and bolus

Grumps.

Taking Heart – 25 Years and Counting….

 

So today (26th August 2019) marks 25 years since I was diagnosed with Type 1 diabetes.

A lot has happened.

Technology advancements.

Lots of learning.

Finding my community.

Accidental advocacy.

Diabetes related complications.

My son’s diagnosis.

But that’s all in the past.

 

Right now, there is one overwhelming feeling.

That time has gone fucking quickly!

 

So, what about the future?

Right now, I’m ok with my diabetes management.

More ok than I ever have been and maybe a blog post on why will be written soon.

So, the future there looks good to me.

 

I care very little about statistics but two stand out for me today.

I’m 50 years old.

I’ve now had this half of my life and the older I get the faster time seems to go.

I have some very definite plans for what’s left of my life.

So, I need to make sure I take steps to be around as long as possible.

Steps to minimise the health risks that increase with age and are upped more by the length of time I’ve had this condition.

Priority one as of today is my heart.

I kind of need it.

My focus is not driven by fear nor by diabetes.

Family history of heart issues and strokes is addingup and that’s for family members that tick few or none of the at-risk boxes.

Of course, I can stick an added chunk of risk on what’s already there by having T1D.

 

No point in me making statements and promises of what I’m going to do except that it’s top of my list of things to discuss at my annual review next month and we’ll take it from there.

 

I learned a long time ago that living well with diabetes is not just about diabetes and I plan to be doing exactly that for at least another 25 years!

 

Live Long and Bolus.

Grumps.

Don’t Tell Me It’s Easy!

On the eve on any milestone event or anniversary it’s easy to sit and reflect.

I try not to do that.

No point looking back.

You can’t change the past.

But for me today that’s not been easy.

A quick flick through the last 24 years and 364 days brings me to one date.

A recent date in comparison.

 

Every talk I’ve been lucky enough to do over the last few years had a slide with that included this bullet point:

• Family History of T1D (but I didn’t know it was compulsory)

After February 2019 I made a slight amendment….

• Family History of T1D (but I didn’t know it was compulsory), and it’s still running….

 

Since then I have not blogged, tweeted or talked about my son’s diabetes.

That will not change.

It’s his story.

It’s not mine to tell.

If he wants to tell it then he can.

 

People have been kind.

I really appreciate that.

People have been supportive.

I really appreciate that.

People have asked what his A1c is.

Please don’t ask me that.

Please don’t ask him that either.

A few have told me that it must be easier because I have T1D……

I don’t appreciate that!

Easier?

It’s it Fuck!

If I’d been hit by a car in my past and then this year he had, would it be easier for me?

No.

I’d just know how much it hurt!!

So, if anyone out does think it’s easier.

It’s not.

It’s really not.

That blood glucose reading just before you get him in the car to start his life with T1D brought almost 25 years of living this crashing through your brain like an express train.

At the same time, you maintain that calm poker face so that he knows that he’s going to be ok.

Because you are the only one that never loses it.

If you lose it then he’s going to think that he can’t do this.

If you are just you, then he knows that he will be ok.

And he is ok.

Not because he as 16 and its easier.

Not because I have T1D and its easier.

Because I am exactly the same parent that I was before his diagnosis.

Because that is who he needs and trusts.

I’ll agree that it is different for me.

But its sure as hell not easier!

Live Long & Bolus.

Grumps.

Tomorrow Never Comes…

The letter has arrived to remind me my annual review is in September.

So the voice in my head (or at least one of them) tells me “sort a few things out” before I go and get my bloods taken…..

It’s a natural thought, (this is where everyone tells me they never think this and I’m a bigger freak than we already knew), and I always tell myself, when I see that yearly reminder, that today is the new start that kicks of a few minor changes to live a bit healthier etc.

Reality is that I do.

I make the small changes.

I go to the appointment.

I always come out motivated.

I make a few more changes.

Then, life takes over.

It takes my focus

So each day I tell myself that “I’ll sort that tomorrow…”

 

I actually really enjoy going to clinic appointments.

I lead the conversation and don’t leave until I’ve covered everything on my agenda.

I go annually, which we agreed was what I needed sveral years ago.

However, this time I may ask to go every 6 months.

Why?

Annually gives me 365 “I’ll sort that tomorrow(s)” and that’s too many now I’m 25 years into this Diabetes stuff.

And as my dad always told me: “Tomorrow never comes”.

 

Live Long and Bolus

Grumps.

D is not just for Diabetes………

Today I bought a book.

No big deal, right?

Well, no.

The thing is, I have not read a book since I left school in 1985.

I do own books. Gardening books, books on DIY, and of course, the obligatory books on diabetes.

I have started reading them but never finished a single one.

Why?

I’m not very good at reading.

It takes me a long time to get through a single page, let alone a whole book.

Words tend to move about on the page and my brain often sees words that aren’t there which totally changes the meaning of what I’m reading, or it makes no sense. So, I have to go back and read it all again.

At school I did everything to avoid reading out loud in class.

Reading ahead is a challenge because my brain takes a while to process the words.

That makes me slow, and stumble over what I’m reading out loud and there is no flow.

I used to think it made me sound stupid, when I’m not.

 

Dyslexia was never mentioned at school and it was never diagnosed.

Back then I think there was a level of stigma attached.

Oh, now that sounds familiar.

 

As an adult I did not bother to have it diagnosed and to this day it still hasn’t been.

Why not?

I don’t see the point now.

I have gotten to where I am today (wherever the hell that actually is) by finding workarounds and methods to deal with it.

Also, I am stubborn.

I do things alone.

I see accepting help as a personal failure.

Yes. D is also for Dickhead……….

 

Why am I telling you this?

D is also for Determination.

I’m not one to give up.

Time to tackle my other D

Time to defeat this one in order to carry on dealing with the other.

 

I have Diabetes.

It’s a condition I have to self-manage.

I need to be educated about it in order to manage it as effectively as I can.

I need to be able to get the best out of the technology that I am privileged to have.

Everything I need to know is out there, but it is all stuff I need to be able to read and understand, without it taking me too long or losing interest.

 

With my 25^thDiaversary skipping its way towards me, and ongoing diabetes-related foot complications a fact of life (more in my next post), I owe it to myself to read and learn more.

The other reason is that I currently have way too much time on my hands.

Time to think.

A thinking Grumps is a very dangerous thing.

 

So, I am going to try and read a whole book.

Get into the habit.

Train my brain to find and to hone those workarounds and methods.

Find a way to focus and keep that focus.

 

The book I bought has a real interest to me since I have always loved Billy’s work and his observations on life. So lets see if I get to the end of it………………..

Grumps.

It’s About Time…….

There is one thing that every PWD, regardless of the type of diabetes that they have, where they come from in the world, or anything else for that matter, has in common. Their diagnosis…….

Most of us probably remember the day we were diagnosed – I certainly do – but if not the exact date, I’m sure we remember how we physically felt and know that we had at least one, if not all, of “the 4 Ts”.

Sunday 14^thJuly 2019 sees the launch of National Diabetes Week in Australia, and Diabetes Australia is building on their past years’ campaign to raise awareness of the signs of undiagnosed diabetes and reduce the number of people that are diagnosed with either type1 or type2 diabetes too late. The earlier the diagnosis the better the outcomes.

The 4 Ts are not always easy to spot at the start, it depends on how fast the onset is. Even with T1D, my diagnosis was fairly slow, so it was people that didn’t see me that often who first noticed the weight loss, not those that I lived with, and because I was not trying to lose weight I just ignored them (and because I ignore most of the population of this planet).

The onset of T2D can be much slower and subtle, and in fact people can live with the condition for an average of 7 years before they are diagnosed. You may wonder how you can be that unwell for that long without realising or doing anything about it, but I can associate with how that could happen.

Looking back on my diagnosis I’m pretty sure that I had an onset that took at least 4-5 months. That’s based on when that first person asked me if I’d lost some weight to the day I finally took myself off to the doctors and, well, the rest is poorly documented history….

In that time, I don’t remember feeling that unwell. Tired yes and at diagnosis I was exhausted. However, it wasn’t until I started on insulin that and felt better that I realised exactly how crap I’d been feeling. The slow daily progression must have just felt like my new norm and my brain took that as the baseline of how I felt. With those changes being so subtle (ironic as subtle really isn’t me, is it?) I didn’t really register that I was feeling less and less well. So, I will never judge anyone for “not acting fast enough and looking after themselves” so please don’t do that either.

People noticed the signs of my undiagnosed diabetes.

They flagged them to me without knowing what they were.

When I realised what they were, I didn’t act as I didn’t know how serious this was.

As a result, I got a hell of a lot more unwell than I needed to.

It could have been avoided if I’d know the facts.

So please help raise awareness outside of our own diabetes community and stop others being diagnosed later than they could be.

https://www.itsabouttime.org.au

Live Long and Bolus

Grumps

 

Disclaimer:

Diabetes Australia has not funded my trip to Australia or paid me in any way. They have just been kind enough to let me work with them and support this campaign.