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

17 Dec

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.

Advent of Insulin

5 Dec

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It’s that time of year again…….

Bloody Christmas…..

When I was a boy (about 100 years ago), I used to have an advent calendar.

Nothing fancy.

Just a cardboard one.

Some kind of festive picture inside.

Snow – I bloody hate snow….

Carol Singers – I bloody hate singing….

Christmas Pudding – Now you’re talking!

It had 24 doors on it.

We seem to have added one these days for some reason.

I guess things change, don’t they?

The calendars have changed too.

Some now have chocolate in them.

I’ve even seen ones with whiskey in them.

Ones with beauty products in them.

A gift for every day in the build-up to the day of gifts it seems.

I have to admit, I was tempted to treat myself to the whiskey one.

Really tempted!!

Well, Lets face it, no amount of beauty products will fix this face.

I was so tempted that I went online,

Found the one I wanted,

Added it to my basket,

Hovered over “Check Out” ready to click.

After all, what would be better than a whiskey advent calendar….

Then I realised.

An Insulin one!

What if I could send an insulin advent calendar to a child with T1D that has no access to insulin?

Of course they don’t exist.

So, I did the next best thing.

I deleted my basket items.

I went to https://lfacinternational.org

I donated £25 to Life for a Child.

£1 for every day of advent.

I can’t send an insulin advent calendar, but I can make it an #AdventOfInsulin

Live Long and Bolus

Grumps

The Beginning of, the Beginning….

25 Nov

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Today I was asked the question that I have been asked more times that I can remember over the last 13 months.

“How is your foot?”

For the first time, I answered.

“It’s fixed”

It’s been fixed for over a month now, but its not been something I was comfortable in saying out loud. I guess it’s because through all of the issues and treatment with my foot, there has always been an element of guess work. Often the appearance on the surface of the foot gave us an educated guess of what lie beneath.

Also, I guess that I didn’t want to temp fate. Not that I believe in fate but given the slightly elongated journey to getting a fixed foot, I wanted a period of stability and for it to all look ok and CRP markers to stay down before I could admit to myself that my foot is actually fixed.

So, I have discovered a slight chink in my resilience, which is not easy to admit…

I can take any shit that is thrown at me on the chin, tackle it head on and not bat an eyelid.

  • Ulcer
  • Bone Infection
  • Self-administered IV antibiotics
  • Long distance travel with all of the above
  • 32 weeks out of the 54 of treatment were on some form of antibiotics

All of the above did not phase me. However, tell me that everything is ok, and I can’t get my head round it.

Weird?

Well, I never claimed to be normal, did I?

Anyway…..

That’s it right?

Grumps is fixed?…

Well, yes.

But….

If I’m totally honest with myself (which I actively avoid being) my foot is fixed, but I am not.

Everyone kept telling me how much I have been through the last 13 months.

I still genuinely think it wasn’t as bad as I may have made it sound, and it now seems to have gone fairly quickly. I do have to admit though that whilst I was not in the greatest of shape (total underestimation) and not the fittest (again, really not), by body is properly screwed now…

The lack of exercise whilst resting my foot means I have next to zero fitness. I’ve put on some weight and my insulin resistance has gone up. My BG management has been ok but running a bit higher than I used to partly due to the above with the infection and antibiotics thrown in. Kind of a vicious circle that needs to be broken now. Especially that I have in my mind more now that I need to what I can to minimise my risk of further related conditions.

So, my foot is definitely 100% fixed, and I have my head around that now, but I am not fully recovered.

However, I will be!!!

The resilience that saw me through the bit of a foot issue will see me through to recovery.

I am not planning to train for a marathon, I have a foot infection, not a lobotomy….

I’m not planning some epic sporting event. I’m way too lazy.

I am planning to make a few changes to ensure that I am #FitBy50 (you can credit @anniecoops for that one).

But first…….Pizza!

Live Long and Bolus

Grumps.

Complicating Complications

19 Jul

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.

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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.

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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.

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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.

 

Type 2 Diabetes with Complications -20 years

13 Jul

Next up in the series of guest posts is Fenella Lemonsky

I was diagnosed by accident. I had always struggled with my weight. I had a history of multi-impulsive bulimia which meant overeating mixed with typical bulimia since adolescence. Back then we didn’t have a diabetes online community like gbdoc or NHS leads like Dr Partha Kar, DSN leads who worked across the board and engaging people with diabetes themselves whether T1 or T2. Hospital & primary care senior  managers kept their doors shut.

I was about 27 years old and went to see a gynaecologist about very heavy bleeding. At the time the heavy bleeds didn’t worry me beyond understanding dysmenorrhea. I mean T2 diabetes never ever crossed my mind. The gynae ran bloods and 6 pm December 23rdI get a phone call to say my glucose was 28.

It was a very traumatic 24 hours although  my GP and practice nurse ( now Siobhan Harrington is CEO of Whittington Health NHS Trust) were good. However the struggle post diagnosis to get into a good Hospital consultant clinic was frustrating and upsetting. The GP believed he knew best however I had complications with mental health and found metformin very difficult. I was seen by one GP who was rude and ignored my MH difficulties with an eating disorder & emotional instability. Other GPs really got it’, the support was unconditional. However I was able to get into a good hospital consultant multidisciplinary team clinic. The consultant a tough academic was honest with a twinge of gentleness in his body language and voice. The DSN & dietician kind and never ever made me feel ashamed. I found  the podiatrists ( and still do) helpful but I had an issue  with stigma upsetting . Once arriving very early eating toast & peanut butter the podiatrist in the broom cupboard room said ‘ that won’t do your feet any good ‘ when I had my first ulcer. However it was a good move elsewhere and the best thing as  overall the diabetes podiatry service was friendly and clinically effective.

The hard inspiring work by the consultant clinical health psychologist I felt  so good but the feet problems  pushed me  over the edge. The move to a new clinic at a new hospital was a fresh brilliant start. . It was a time of huge NHS transformation in diabetes care.

I’m now in a good team at another Trust however the history is complex. A very  good MDT However podiatry whilst much better as completely different it’s very hard for me, I had really highly skilled podiatrists however they were turned into ‘operational managers’. It’s the transformation thing. The young new podiatrists will hopefully not leave for management now they have good diabetes skills.

Chronic foot ulcers & infections over the years and finding a balance with juggling multiple insulin injections. Then adherence and finger pricking. Sliding scales, Victoza in the mix.  Not easy however important I mention the pain consultants whose support has been outstanding. Negotiations over pain management not easy. Any higher opioids push me into delirium and dissociative states so the delicate balance of breakthrough pain relief in pain relief in chronic diabetic neuropathy important . I’ve had private health care and the luxury of consultant time without in/ out door going and the one to one privacy was a remarkable experience. However he was tough at times too ( ‘you ARE go8ng back on Lantus’….and that was painful to hear as I was told my foot ……) and it was never a walk in the park. Yet the clinical skill in NHS is outstanding however the overload of diabetes services is huge, the growing Type 2 Group only means more hospitals will have to think about how they support and empower earlier on. The employment of peer support like in mental health should not be discounted. In mental health this has been going on for years successfully.

I had a successful NHS career in both academic and NHS Trust / DoH work. I effected changes locally and worked with corporate teams who I had mutual respect for . It was a huge shift to give that up . Coming from progressive MH work with brilliant teams to now  just referred back into a specialist personality disorder service due to the complex trauma.

I was unfortunately diagnosed with osteomyelitis & sepsis last year and had my big right toe amputated. A huge shock as my blood glucose levels were very good. HBA1cs of 7-9. However I know it was the 15 odd years catching up . The add on of retinopathy and eye bleeds was the most frightening however an outstanding team support me and the nurse specialist there and her team smile as I arrive with a bag of chocolates. Can only be in diabetic retinopathy clinic. The consultant does international aid work in his own time training nurses & doctors abroad in war zones. He smiles as he walks up the corridor saying ‘ hi!’ with a cheeky grin. In the room he says ‘ can I see your app please .’ Blood glucose results. He’s bothered .

Finding myself on dark days eating the foods that spike my glucose and I shovel in extra novorapid & lantus however the support around me keeps me going .

A very last but not least mention to the community nurses who look after my feet in the week.  I’m about to start on the Freestyle Libre. Not cheap but I’m so anxious to prevent further deterioration. The online buzz around this important tech is inspiring. So yes I’m not on a pump but I still need tight control. It will help. Huge thanks to you all. Each and every one of you.

Thanks for reading this.

IV AB Day 5 – Flying Solo

4 Jul

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Day 5 saw me flying solo with my IV and self-administering for the first time on my own at home.

Nothing to report.

Everything went to plan and was uneventful.

Which is good.

I made sure that I was on my own so that I had no distractions.

I did take a longer time to set it up than when supervised at the hospital.

Doing this for the first time I guess I checked everything 3-4 times more than needed.

But I do understand that this is serious shit and that getting it wrong could cause me additional issues that could at least be a pain in the arse……

 

Again, this reminded me of my Diabetes diagnosis and the first injection that I did on my own when I got home……

Everything went to plan and was uneventful.

Which was good.

I made sure that I was on my own so that I had no distractions.

I did take a longer time to set it up than when supervised at the hospital.

Doing this for the first time I guess I checked everything 3-4 times more than needed.

 

I think that these are both like driving a car.

You are shown how to drive.

You get behind the wheel under supervision.

You learn and become more confident.

You pass your test and get released into the world to drive on your own.

Your first trips out unsupervised are hesitant and you double-check every move and maneuver.

With experience your confidence builds.

It becomes second nature.

Before you know it, you are driving with the music blaring, your arm out of the window and your feet on the dashboard……….

 

As I carry on with my DIY IV I will get quicker.

It will become second nature.

It will become more familiar.

However, I must ensure that familiarity does not breed contempt.

That it does not lead to mistakes or errors.

 

Live Long and Bolus.

Grumps.

 

IV AB Day 4 – Released into the Wild

1 Jul

The plan for today:

  • Get new cannula (Mid-Line) fitted by DR
  • Set-up own drip again
  • Get dripped (is that a thing?…)
  • Bugger off home for Sunday roast!

Had a longer wait today as I needed to see the Doctor to put in the “Mid-Line” cannula.

Why does it need a Doctor I wondered?…

Well, as I found out, because its fucking long!…..

This is the original Standard cannula. It needs to be changed every 3-5 days. It is also in a bloody annoying and inconvenient place!

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Because I will be on IV daily for at least 6 weeks I was offered a “Mid-Line” cannula that can stay in place for at least 3 months. Sounded good to me so I agreed.

When I was called in I was asked to lie on the bed type thing.

The Doctor comes in and tells me about this thing…..

“I will insert it here (pointing at the place my bicep should be) and it will go in your vein up to here (pointing just below my shoulder)”.

“Okay” my mouth said.

“OH FUCK!” my brain whispered….

The Doctor proceeds.

Uses an ultrasound scanner to find the best route.

Unpacks his sterile gown.

Puts a sterile sheet thing with a hole in it over the insertion area (stop sniggering please).

Injects my arm with local anaesthetic (Oh. Numb left hand. Useful…..)

Sticks in a big needle thing.

Feeds in what seems like 123 metes of cannula.

Withdraws inserter (he told me it was a safe method…)

All done!

 

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I have to be honest, this is 100 times more comfortable than the other one.

I can bend my arm ok without catching the cannula.

So even though it was a prolonged procedure it was worth the wait.

After that I set-up my IV as I did yesterday and got my daily dose.

 

Bonus for the day?

I got given everything I need for the next 7 days to do this solo.

I need to go back every Sunday, get my bloods taken and pick up the next week’s supplies.

The guys at my hospital have been fantastic!

The extra time that they have taken in teaching me to do this on my own allows me to continue to live my life how I need to and ultimately earn a living.

So, tomorrow I fly solo.

But that’s another blog post….

Live Long and Bolus

Grumps.