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.

Complications suck. But life goes on if you want it to.

Guest blog by Diana Maynard.

I was 7 when I was diagnosed with type 1 diabetes, back in the 70s when treatment consisted of big metal and glass syringes stored in surgical spirit, a couple of urine tests a day where you peed in a container, added 5 drops of urine and 10 drops of water to a test tube using a pipette, threw in a fizzy tablet, and tried to figure out whether the resulting solution was orange (high), blue (low), or green (good). Of course, that only told you what your average blood sugar had been like since the last time you peed. Basically useless. What good was knowing you’d had a hypo 4 hours ago? Not much was known about complications back then (actually not much about diabetes at all) and clinic visits consisted of the consultant asking if I was all right and whether I did sports, which of course I did, and him giving me a beaming smile and sending me on my way.

Getting diabetes didn’t seem too bad at first (other than not being allowed marmalade on my toast “because it’ll stop your insulin working properly” as my mum put it). My dad had had type 1 diabetes most of his life and he was fine after all. His attitude to any kind of health problem was simply to grin and bear it and not to mention it. God forbid anyone should know that you were not healthy – a complete sign of weakness (like staying in bed after 8am – a mortal sin!). I don’t think he’d ever really got over not being allowed to join the military on account of being diabetic, and to be honest, that was probably the worst thing about it for me too (me not being able to join the military, I mean, not him). On the day I was diagnosed and was lying in hospital feeling like a fraud (I felt perfectly OK), my dad brusquely told me “tough luck”, handed me a syringe and told me that as I’d be injecting for the rest of my life I had 2 choices: inject myself right then, or die. I took the first choice. He then said: “Don’t ever feel sorry for yourself, it could be a lot worse. You could have lost your leg or be blind.” He added that when he’d been diagnosed in the 1940s, the person in the bed next to him had died from diabetes complications on his first night in hospital.

Fast forward 20 years, and irony struck. I became registered blind as a result of retinopathy, and my dad had a quadruple heart bypass and later lost both his legs (and eventually died) all as a result of diabetes complications. Oddly enough, when I lost my sight (very fast, within the space of 6 months, despite a wonderful team at the eye hospital who tried to save it – I was just very unlucky in this respect), one of my closest friends lost his leg to cancer. Watching him struggle with that (my dad wasn’t to lose his legs till some years later) made me realise how lucky I was to still have my legs and only be losing my sight. I was told by the doctors that I’d lose all my sight within another 6 months, but thankfully I didn’t. I didn’t find out until later that my friend, Steve, got through his leg loss partly by thinking how lucky he was that he hadn’t lost his sight like me, and by watching me deal with progressive sight loss. More irony. The other thing that got me through it was being recommended to go to Braille classes, since they were predicting I’d lose all my sight. I duly went for a few months, and it was the best thing I ever did. Not because I can now read Braille (I’m still rubbish at it – it’s actually incredibly hard!) but because I met several deaf-blind people there (Braille is essentially their only communication since they can’t lipread, use sign language (except by touch) or listen to audio or read subtitles). These guys loved life so much despite this, and it made me realise how lucky I was that I could still hear and had only lost one sense.

The weird thing about all this is that as a child, I grew up never talking about diabetes, because it was not the done thing (I once got severely reprimanded, aged 6, by my dad for telling our next-door-neighbour, a farmer, that my dad had diabetes, while I was watching the farmer inject a cow). So I barely ever mentioned it to anyone, even my closest friends. There was no internet and there were no support groups back then, so I had no one to discuss my feelings with even if I’d wanted to. But when I got complications, I couldn’t hide the fact that I couldn’t see properly (I use a white stick sporadically these days, depending on the situation and my mood) and I have absolutely no problem talking about sight loss and diabetes to anyone who’s interested. I write a blog about travel as a blind diabetic, work for 2 diabetes-related charities in my spare time, and do a lot of advocacy in the community. I think the main reason for this change of heart is that I really struggled with not being able to talk about it when I was in my teens and twenties, and I’d love to be able to help even just one person not get complications. Because if you think diabetes sucks, then losing your sight or your leg suck a whole lot more. And it’s also not always easy to deal with things like sight loss. I mainly rely on sheer stubbornness, refusing to let it stop me doing the things I want to do. There are some exceptions: I’m not allowed to drive a car any more (though a friend did let me drive his car around an empty carpark) or fly a plane (which might have been fun, but I couldn’t fly a plane before I lost my sight). I can still play a lot of sports (badly, but my teammates are very supportive), mountain bike (badly, but I’ve only had a few accidents, none of them too serious, and slowly), climb mountains (slowly, but that’s mainly just because I’m not as fit as I’d like to be), work as a full-time academic (luckily I work with computers not hazardous chemicals) and do most normal things. Since my sight loss, I’ve been cross-country skiing and horse-riding and done plenty of stupid things, mostly without harm. I also get lost frequently, can’t recognise my friends (or enemies), fall over in airports and break bones, walk into things, talk to shop dummies, and get frustrated. But apparently “normal” people do all those things too.

So in summary, my message is this. Try not to get complications, because they suck. Big time. Do everything you can to look after yourself (now we have such cool technology these days) to minimise the risk. But you might do everything right and still get complications, just as people who have never smoked sometimes get lung cancer. And if you do get some kind of complication, make the most of what you can still do. Beating yourself up will do you absolutely no good at all, so frankly, I wouldn’t bother. I got diabetes and my brother didn’t. Lucky him. He got a brain tumour and I didn’t. Lucky me. We’re both still alive and plan to stay that way for many more years.

Complicating Complications

I’ve run on and on about the sight issue with my foot, Right?

In the past, I’ve run on and on about my nasty little rash due to tape allergies….

(I’m not sensitive, I’m intolerant!)

Well, in the interests of completeness, I have managed to combine the two!

Part of my #DIYIV kit is a “Mid-Line Cannula” inserted into vein at the bicep (yes, if you look carefully there is one somewhere) that runs up to my shoulder area. There is a clip stuck to my skin to hold the line in place and it is (was) tapped down with Tegaderm (I think) to prevent infection of the arm.

Knowing that the tape was likely to give me a rash, I decided to go with it and see how bad it got. After all, I could put up with a bit of a tickle for 6 weeks.

I did already have a rash on my lower arm from the 3 days of tape that held in the standard cannula before the Mid-Line was seductively inserted by the Doctor…….

Within a day, as I had the expected rash appeared and by 7 days it was itching like a bad case of Crabs….

I still elected to carry on with the tape and see how it went.

It went Shit!

The rash and itching was worse and I was reacting to the adhesive of the clip too.

Again, at the weekly dressing change by the Nurse, after a discussion, I stuck (no pun intended) with the same tape.

Stuck….

Kind of ironic.

By that evening the tape just slid off my arm.

The reaction had decided to go nuclear and arm had erupted in to an oozing (genuinely love that word) flow of bodily fluid (not the kind that’s enjoyable to produce…).

Carefully, like an actual grown up, I cleaned the area, let it dry then patched it up as best I could with the only tape I don’t react to. Hypafix.

All of that was on Sunday. Come Monday I toddle of to work 175 miles away, do a day’s work and get to my hotel. 8pm sees IV drip time and that goes to plan as always.

However, when disconnecting the IV line, I notice that the mass of tape is moving a bit (like too much of a bit!).

Closer inspection sees that the clip is no longer stuck to me as, yes, you guessed it! OOZZZZZZZZING…

Only one thing for it!

Carefully.

And I mean fucking Carefully!

Lift the clip, clean under it, let it dry, strip of Hypafix underneath then tape (what remains of) the clip to that.

Side note: It did cross my mind that the only thing that came close to bothering me was that I was totally un-phased by pissing around with this kind of thing.

My conclusion? People thing I’m resilient. Maybe I’m just stupid.

Anyway, all went to plan, if you can call it a plan and it no looks like this…..

It’s working ok and I will be back home at the weekend, visiting the clinic to come up with a suitable but more professional solution.

Getting the foot issues has not been ideal.

The treatment could be seen as a challenge.

The rash making the complications (or at least the treatment of them) more complicated is quite frankly taking the piss!

However, it’s just one of those things.

I will never, where humanly possible let, any of this stop me working or living my life the way I want to.

 

When life throws you hand grenades.

Catch them.

Pull out the pins and throw the bloody things back!

Live Long and Bolus

Grumps.