Posts tagged sleep deprivation

Lance And The Big Blue Tablet.

Things ain’t looking good for Lance.

He has been going to bed everynight at 2am,  because he is in SUCH agony and discomfort with his feet and legs.Massage, warmth, paracaetamol, ibufrofen…I may as well be giving him M&M’s and rolling clingwrap around his legs.

I am so sleep deprived- if a sentence doesn’t make sense, please forgive me.

I took Lance to the doctor today. The doctor saw him and sitting on the chair, and said, ‘Your legs still hurting, Lance? The way you are sitting..they look, they look very heavy.”

We both nodded with bleary eyes. Lance isn’t coping with the sleep deprivation either.

I got a letter from the podiatrist today spelling out the hard, cold , agonising truth.

Catergory 1 (at risk) – “Neuropathy, no deformity-Patient is 1.7 times more likely to develop  an ulcer than person of equivalent age with no diabetes. 6 monthly podiatry reviews required…..”

Sensory Test-“Monofilaments showed neuropathy was present with loss of monofilament sensation up to the knees….”

“My differencial diagnosis consists of  SYMMETRICAL POLYNEUROPATHY….”

“Some suggestions would be Capasaicin, Oral Thioctic Acid, Tricyclic antidepressants, anticonvulsants, transcutaneous electrical nerve stimulation (TENS), Acupuncture…..”

Given Lance’s age, I feel that due to the potential side effects the antidepressants and the anticonvulsants be kept at a last resort.”

 Dr Congo took one look at Lance, and picked up his telephone. He dialled a neurologist whose books are full for an entire  four months. By the end of the consult with Dr Congo, we had an appointment for Saturday!!!

However, the not-that-great news, is that Lance has to start a course of Endep. As much as I battled to try and avoid any oral medications, I realised that we were both floundering about in quicksand. I need sleep to keep him well and pain free, and  take care of his diabetes. He needs sleep, because, at eight years old, five hours sleep is no where NEAR enough.

Endep is an ancient tricyclic antidepressant, which is also effectively used for the relief of chronic pain. He had his first tablet, a shower, and his dinner. I asked him a question, and 40 minnutes later, I could see his tonsils vibrating. Finally, his little body lay still, his legs relaxed, his feet…his beautiful feet looked so clean and just like the did when he was a baby.

Amitriptyline-10mg. Otherwise known as Endep. 

Amatriptyline..otherwise known as Endep.

I made the obligatory calls to his team and I spoke to our regular endocrinologist’s partner. He listened in disbelief as I told him about the mornings events.

“Kate, you must rip the script up, I  think you should consider getting a new GP for Lance.”

 Somewhat puzzled, I asked “why???”, and he said, “Well, he’s prescibed a low dose narcotic here to an eight year old, do you really want your son with a prescription drug dependency??”

(Turns out Doofus the Enodocrinologist was thinking of Endone, not Endep. (Endone is taken for severe pain, and is often referred to as “Hillbilly Heroin”, as you can get it for bupkus on a script, and apparently have a whale of a time if that’s what does it for you-it basically mimics heroin, but in the pharmaceutical tablet variety.)

I held that Endep script in my hand for so long, wondering if I should hold out until I saw the neurologist on Saturday. I took alook at Lance, who could have been a poster boy for “Antz in your Pantz”, and decided then and therefore it was up to me to provide him some relief, despite what the critics thought.With a heavy heart, and a few streams of  tears, I took the packet from the the pharmacist. If this really is Peripheral Neuropathy without medication or treatment, I will never complain about Diabetes again. (I know, what a crock.)

Can I ask you all to keep him in your thoughts this week? He has been suffering in silence for ages now, simply because he thought it was “normal” to feel like this.

After his Nerve Conductive Test on Saturday, we will have a LOT more answers, and possibly a positive direction which way to go…

Again, I IMPLORE of you, just because you have a young child, or a teenager, or a twenty-something, does not MEAN a thing if you ain’t got that swing. Any symptoms such as painful legs, heavy limbs, pins and needles to the excress, no feeling in the extremities, unusually hot or cold feet, GET IT CHECKED OUT. Demand a test for PN, even if you get scoffed at by your family GP. A Podiatrist has all of the equipment to conduct the tests,and provide answers.

Having diabetes isn’t JUST all about AIC’ testing, eye checks, the annual urine sample…there are so many parts of the body that it affects. After being diagnosed for 5 years, go ahead and make the steps to organise the appointments yourself, EVEN if your GP tells you they are”‘not necessary.”

I just checked on my Lance. For the first time in months, he is sleeping peacefully, His legs are still. His face is relaxed, and not grimacing in agony.

Despite my hesitation regarding him starting the medication, I now know I did the right thing.

I’m going to follow him to bed, for the first time in years.

Goodnight!! (And it’s been a long time since I have said that, too!)

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Pump Wars.

Crikey.

(Not only is this word appropriate to describe today’s events, but it is also two years ago since the world lost “our” Steve Irwin.)

I do try to keep expletives out of my posts, but I really felt that today they were necessary.

It’s The Pump.

 Lance complained that his site was “uncomfortable.” As I only changed his set yesterday, I had a peek to see if there was any redness or inflammation. Nothing. I decided to leave it for half an hour, just to see if it really was bothering him.

Fifteen minutes later, I heard an unfamiliar alarm.

“Sweetie, what’s your pump saying?” I called.

Um..Mum, it’s saying “No Delivery.” he replied anxiously.

I remained calm, and outruled all possible problems that could be causing this urgent message.

Finger Prick. That would tell me if his basal rate was being delivered.

25.9mmol/L.

$*#@ !!!!!!!!!

The pump was telling me that I need to “disconnect from body and change set.”

Okay, okay.

I got another set ready and attached it to Lance’s belly. He said that it felt comfortable.

I corrected for that frightful hyper. The pump told me it wanted to give 3.5u of insulin. Sounded perfect to me.

Tested for ketones. Phew. None to be found.

I served afternoon tea, and told Lance the amount of carbs he needed to bolus for. I double checked his entry, and gave him the go ahead to press ACT.

I was just about to sit down and flick through my mail..

No Delivery.”

This wasn’t funny.

BSL- HI. Blood ketones-0.1.

$#*@ !!!!!!

Again, I removed the set, and applied a fresh one. As ketones were now on the scene, (even in miniscule amounts), I administered an injection of Novorapid, via our old friend the NovoNordisk Flexpen.

It felt very strange to administer an injection again.

“It’s been a while since we’ve had to have a needle, hasn’t it?” I mentioned.

“Oh, I KNOW. It felt sooo good to have a needle again!”

My seven year old boy-with a wide smile on his face, as a result of an injection. It was such an odd concept to fathom. I did feel incredibly sad and confused that the familiarity of a needle entering his stomach eased the anxiety he was feeling regarding the pump and its out-of-character behaviour. I understood that the prick was a feeling that Lance associated with trust and feeling safe. Still, it was difficult to see him so pleased, considering the reason behind it.

An hour passed, and his blood sugar had slipped down to a still concerning 18.6mmol/L.

Now I didn’t know the drop was from the pen, the pump, or both.

My gut feeling said it was from the injection.

Despite his hyperglycaemia, Lance still requested food. I told him to bolus for 44 grams of carbs. He did just that.

Sure enough, ten minutes later….

NO DELIVERY!!!!!

$&*! $&*! $&*! !!!!!!

By this stage, Lance had a blood ketone reading of .4. I began to feel fluttery and panicky.

I sat down with my list of emergency phone numbers.

Firstly, I decided to call the 24 hour Medtronic Helpline.

Despite being 2.20am somewhere in the US, a happy and chipper customer service consultant took my call. We went through some trouble shooting processes together, all seemed fine.
He apologised for the waste of sets, and kindly organised three replacements to be sent express post all the way to Australia.

Nice gesture, Medtronic.

My next call was to the 24 hour emergency endocrinologist. We had never had the pleasure of meeting, so he was totally unfamiliar with Lance’s history.

He advised that I pack the pump away, call Medtronic Australia first thing tomorrow and recommence on Lance’s old insulin regime along with hourly testing throughout the night.

I decided to take the advice of the Medtronic Consultant. I changed the site yet again, and it’s been one hour since I’ve heard any nonsense from the pump.

Blood sugar is falling. Still high, but much better than off-the-meter.

Ketones are gone. 🙂

Giving my son that emergency injection was like giving a reformed heroin addict a jab of pethidine. He got a taste of what it felt like to be back on injections, and he liked the sensation of feeling safe and not knowing the fear of the unknown. He was disappointed when I went against the endo’s advice. He sighed as he saw me preparing a new set.

For the meantime, we just have to get through the night without that evil message causing undue stress for both of us.

$&*! What a vile day!!!!!!!!

Spending the day worrying about diabetes, ketones and blood sugar levels has left me exhausted and dreading the next 12 hours.

Meanwhile, Lance has forgotten all about the drama of the day, and is creating a helicopter out of Lego.

I wish I could switch off like he can.

Thankfully, I was able to vent my frustrations to my most amazing confidante, Janek. He understood exactly how Lance felt, and how I felt. I now feel slightly better that I have spoken to someone who knows OUR situation.

It’s now 2.22am. No alarms. Lance is settled and sound asleep on a perfect 6.6mmol/L.

Beauty, mate!

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The Hunger.

“When it is good, it is very very good…”

We are entering Week Four of pumping.

Things are progressing incredibly! Site changes are a breeze, with no infections to be seen and readings that are almost too good to be true. Hypos are nowhere near as savage and insidious as they once were.

Despite some initial hiccups, it feels like a lifetime ago when flexpens were responsible for dispensing Lance’s insulin. Today it’s all about five buttons and a Main Menu. It’s just so fantastic to have some of the worry taken out of diabetes.

“but when it is bad, it is horrid!”

As I am responsible for Lance’s blood sugar control and insulin administration, I’m the first to say that there have been some days (and very long nights) where I feel so desperately alone. When the pump beeps at me, and flashes messages indicating a problem, my heart jumps into my throat and I experience such overwhelming nausea, that, just for a nanosecond, I want to pack the whole thing up and hide it in my highest cupboard.

It’s about a week until our checkup with the paediatric endocrinologist. As we are still sorting out basal rates and a few other issues, we are fingerpricking up a storm. I want to be able to give the Doc the best representation of how life has been since we last saw each other a month ago, so I have carefully compiled all of Lance’s readings in his record book.

I’m yearning for unbroken sleep..At the moment, I’m averaging about four hours a night in total, and it’s nowhere NEAR enough.

Meanwhile, there is another issue that has me tearing my hair out.

Now, that Lance is receiving only Novorapid via his pump, he is stupendously hungry, all the time. I can NEVER satiate his hunger, no matter how much low GI, carb laden food I put in front of him. I can spend two hours in the kitchen preparing an evening meal, and upon completing every last morsel, he is STILL looking for something else.

I have tried halving his bolus amounts, thinking that perhaps I am being too heavy-handed with how many units of insulin I am permitting the pump to administer. It’s not that, as an hour later, he is sucking back water, and squirming around like he has several ant colonies scurrying all over his body.

We have a dog, and a cat. They have been wormed, but with the pump hoopla, I had forgotten to worm Lance. That was taken care of two weeks ago. So, no dearest Elder, he doesn’t have worms from our pets. Still, he craves carbohydrates only half an hour to an hour after a huge main meal. His blood sugar levels are hovering around the 5.5mmol/L-7mmol/L area about 80% of the time, (oh and believe me, for this, there is no adjective grandiose enough to explain how it feels to say “good riddance” to those horrid dips and spikes..) but I simply cannot keep his mind off what he can eat next!!!

(I have spoken to the Diabetes Educator about it, and she has suggested that it is possibly just the last part of his growth spurt, and to feed him what he wants, simply accounting for the extra carbohydrates he consumes by bolusing. )

A month ago, the first words Lance would utter were, “Good Morning, did you have lovely dreams?”

Now, he is plotting and planning what he can have for breakfast, and exclaiming how ravenous he is.

I am spending more time preparing food, then I am sleeping!

This is the only place where I can publically vent, as I can NEVER show Lance that I am privately frustrated with preparing feasts that would feed a small African village. It is starting to frustrate him also, as he is tired of brushing his teeth everytime he has to snack, and I can tell he feels remorseful that he has to continously ask me to find suitable snacks for him. As all food consumed has to be accounted for, he has to report to me so that I can administer the correct dosage. Sleep deprivation isn’t helping one single bit.

I have found myself having to bite my tongue when bedtime rolls along.

“Mum, if I brush my teeth again, can I please have a box of sultanas?”

Sigh.

The opportunity to actually speak to the endocrinologist and outline these concerns will be a such a relief. I know that the extra Novorapid and the out-of-whack basal levels are causing the hinge of my fridge to develop a squeak, but it will be SUCH a comfort to drive away from his office, knowing that the corrections he makes will reduce an appetite equivilent to the winner of Survivor.

Other than The Hunger, all things Diabetes are really looking up!

 

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Behind Every Man Is A Good Woman-An Expose Into The Lives Of Two Women Fighting To Protect Their Loved One’s Survival.

I was blessed to meet Liz Yarker by sheer accident just over a year ago. From our very first conversation, we immediately clicked. In fact, two hours later, I was so overwhelmed that I had just listened to a stranger describe my life as a carer of a person with Diabetes. We silently established a strong and incredible friendship that night.

We still have that special “chemistry”, Liz and I. We are both passionate Diabetes Advocates, and would go to the ends of the earth to make life easier for each other. Liz’s husband, and my dear friend James, suffers from an incredibly complex, rare, challenging and cruel endocrine condition, known as APECED. He has numerous life threatening conditions- Type 1 Diabetes and Addison’s Disease to name the worst of many. His life depends on constant insulin infusions, and consuming countless tablets a day. Liz has recently had to make the difficult decision to stop working, as James’s condition has become even more vulnerable, and without her constant care, she was petrified of coming home and finding him unconscious..or worse. She would often have to call work just as she was due to commence and inform them that James had suffered a severe hypoglycaemic attack and needed constant care for the rest of the day.

Fast foward to the past month…more health concerns have arisen. Liz and James are absolutely inspirational considering the devastating news that they were bludgeoned around the head with. Liz and I are both young women, who have bright futures ahead of us. However, it has been only recently that we realised that we are very much trapped…alone..and isolated. (Liz lives at the bottom of the Southern Henisphere in Tasmania, whilst I am residing near Brisbane. We rely heavily on MSN Messenger to communicate!) We compiled these questions together, and answered them individually. Being a carer of a 24 year old man, or in my case, a seven year old boy may sound like a slight inconvenience. This interview has been compiled and published to crack that myth wide open, and so that others’ can get an insight into what we do to on a daily basis to keep our loved ones’ alive.

Lizzie, describe yourself in five words..
Impatient, friendly, reliable, loving and caring

How has being a carer for James changed who you are, and where you thought you would be as a 26 year old woman?
I feel like I am more of a nag than I would like to be. I thought that at 26 I would be working full time as an Occupational Therapist. I recently got approved for the carers pension and I was so excited! I never thought I’d be so excited to be on a pension.

Do you feel that people who aquire Diabetes at a stage of life where they don’t need full time care are aware of what goes into caring for James?
I don’t think many people at all are aware of the care I provide.

How difficult is it for you to have time that is specifically set out for YOU?

Almost impossible. I don’t really have any time for myself at all anymore. Whenever I am doing anything part of my brain is thinking about where James is, what he is doing, if I can hear him – and if I can’t is it because he is just being quiet or because he is unconscious.

Do you feel naked without a glucometer in your handbag? Yes! My handbag has at least quadrupled in size lately. I never go anywhere without a glucometer, glucagon, solu-cortef, a can of drink and a few muesli bars.

Do you think that if a group of twenty people of various ages and backgrounds were asked about Diabetes and what they knew about it, that they would consider it ridiculous for a person with Type 1 Diabetes to receive a carers payment?

Yes. In my experience most people who have any knowledge of diabetes think that it’s a simple matter of changing your diet, having a tablet, or at worst injecting some insulin and you are ‘fixed’.

When you are so used to picking up the pieces of a severe hypoglycaemic attack where the reading is between 1 and 2mmol/L, does it frustrate you when you hear or read about other’s who talk about a hypo, and catagorizing it as ‘severe’ and their blood sugar level reading was 5mmol/L, do you feel like you are talking about the same condition?
It is very frustrating! I think the thing that annoys me the most is that it makes me so jealous! I would love to be able to complain about a severe hypo of 4 or 5!

How do you feel when you receive almost no support from diabetes specialists? I don’t expect support from diabetes specialists, I feel that they don’t really know what it is like to live with diabetes as another member of the family.

Would you justify that the following statement is correct? James’s diabetes as a whole is almost like a fingerprint-in other words, no two cases are the same?

It is correct.

What do you hope that the future holds for you and James? I hope that we can both get back to work. It’s probably an unrealistic hope but it’s still my hope.

If you were not on alert continuously, do you believe that James could get through the day without you? Yes and no. I reckon he could make it through one day – if he didn’t have a hypo or an Addisonian crisis, and he remembered to have his tablets. However, the chances of this happening is pretty slim so no.

Do you go through periods where you feel like you are totally overwhelmed with so much see-sawing and sleeplessness? Yes. I get frustrated and annoyed at APECED. I get cranky when I am sleep deprived and so that doesn’t help matters.

How does your role of caring impact on your role of being James’s wife? Caring comes first. When we are talking and something doesn’t make sense, I think about his level.

Can you go out by yourself without making contact with James to ensure that he is ok? No! I have to message him or ring him to make sure that he hasn’t gone to have a sleep and his level has dropped. When I was working I used to have my mobile on me all the time so that I could check in.

Do you have the ability to vent your frustrations and fears about living under such vulnerable circumstances? I vent to you, Katey, and to Dan. I sometimes vent to James – but that is hard and it is usually only when I am incredibly frustrated. It is hard to talk to James about my frustration and fear without him feeling like it is all his fault and I make sure he knows that it’s not him I am frustrated with.

Do you believe that a General Practitioner would have any idea about what your life is like as a carer for James? Our current GP does. He is really good and knows how much care James needs. Normally though I wouldn’t believe that a GP would know what I do. Considering they mostly have never heard of APECED, the wouldn’t know how much work it takes.

Do you feel like you have Type 1 Diabetes? Yes. I actually think it would be much easier for me to handle if I had it, rather than being a carer for someone with it.

Because you can’t FEEL what a hypoglycaemic episode is like, do you feel discriminated against by the diabetic community because you don’t have diabetes, yet you treat them constantly and help James to pull through them? YES! I may not have physically felt a hypo but I know the symptoms, I have used glucagon, I know how to treat a hypo, how many carbs to give. I do the work to fix the hypo. I get hurt by comments made when James is hypo and then have to try and forget them because they aren’t ‘real’ comments, they are the comments of a sugar deprived brain.

Does anyone else with Diabetes have the right to make assumptions about how James is reacting to a hypo? No. No one with diabetes knows how anyone else with diabetes experiences the condition. They have more right than someone without diabetes, who has no real knowledge of it, but they still have no right. Did that make sence?

Do you have a instant kindredship with other carers of loved ones with Type 1 Diabetes? Not always… it depends on how diabetes affects their loved one. If they are the carer of a person who has ‘severe’ hypos of 4 – then I have little in common with them.

What about carers who call themselves Type 3 Diabetics? How do you feel about that? I don’t know anymore how I feel about type 3 diabetes. I feel like James’s diabetes is also my diabetes, so how could he have type 1, and I have type 3. It’s a clever name and does help to explain the extent that carers are affected by diabetes, but I think that it will add to the confusion over the types.

Do you feel that carers get enough support? No. I think that carers of people with severe physical disabilities get more support – with respite available to them, but people who care for people with diabetes don’t get enough support.

Do you feel that the visually disturbing, heartbreaking and challenging situations that present themselves in a person with Diabetes would be enough to traumatise their carer? For sure. It is very traumatic to see your loved one unconscious – and to have to try and calmly deal with it is impossible. Knowing that each time we get into bed, I could wake up with James unconscious next to me, makes me never want to go to sleep.

Do you think that the diabetic community take into consideration situations such as: sitting on top of your thrashing child to give them a sugary drink, administering glucagon injections to a person who is clearly conscious and disorientated, receiving physical injuries whilst trying to treat a hypo, or even being all alone with no one to help you whilst you wait second by second for James’s eyes to flicker open? I think they think about it, they are grateful for people who help them, but I don’t think they stop to think about the affect of their hypo on their loved ones. I don’t think that they CAN think about it – because I know if I was in their shoes I wouldn’t want to consider the impact of my condition on my loved ones. It is horrible that people need to go through hypos and experience the after effects of them, but carers go through a lot too. I am the one who gets hurt by comments made when hypo, I am the one who has to stick a huge needle into James’s leg, I need to put him into the recovery position, I have to watch to make sure he keeps breathing, I need to watch the clock to know when to ring an ambulance if the glucagon doesn’t work, I need to check James’s level every minute to see which direction it is going, I need to get the soft drink and straw and make sure James is able to drink it without choking on it. I am responsible for saving his life – and I am expected to do it calmly. While all this is happening James has no idea what is going on. His first idea that anything different has happened is when he wakes up and sees the glucagon box.

Because you don’t have diabetes, do you feel as if you don’t have the right to make comments or compare situations with those that do have diabetes? I feel that my comments aren’t taken seriously and that I don’t know what I’m talking about – but I still make comments and compare situations.

Does the carer’s allowance seem paltry to you, considering how much of your day is devoted to caring for James? YES! Carers live off a wage that is $200 less than the federal minimum wage yet we work 24/7. When I was working I was getting paid more than I do now – and I was only working part-time!

Do you have anyone who could step into your shoes if a situation arose? Not in Tasmania. If anything major happened I know that my family and James’s would try to step into them – but so much has changed with his care lately.

Do you fear for your own health and safety, knowing how much James depends on you to survive? Yes. I worry about getting sick and having to go to hospital myself.

When you are asked to provide your job description, and you reply “full time carer”, do you feel as if people are quietly judging you and James? Well in this case I am lucky to live in Tasmania. Before I had to stop work I worked as an assistant nurse in a nursing home – a position which is referred to as a ‘carer’ here in Tasmania. So people assume that’s what I still do.

Despite your complete devotion and adoration of James, on your 21st birthday, what dreams and hopes did you have for yourself at this stage of your life? When I was 21, I was still studying Early Childhood Education so I guess I thought I would be working as a teacher in a long day care centre, and probably have a kid of my own by now as well. I definitely never thought I’d give up work at 26 to become a full time carer to my husband.

When James needs hospitalization, how does it make you feel when hospital staff ask you what “you would do in this situation” or ask you to monitor BSLs?

As James has a very rare and complicated condition, I actually prefer if they ask me what to do – because they mostly have no idea of what needs to be done! This is a bit distressing – but it is unrealistic to think that every doctor and every nurse would know about APECED considering its rarity. We haven’t been asked to monitor BSL’s but I do. I also usually have to remind the nurses to complete all the necessary observations which makes me worry about what happens when I go home.

Do carers have a light at the end of the tunnel to look forward to? Realistically probably not. I like to hope that there is, but for me my job will only end if someone discovers a cure for diabetes, Addison’s disease, hypoparathyroidism, and pernicious anaemia! Carers of children can hope that as the child grows up they will be able to take over more of their own care, or that they will find someone who loves them and will care for them. Other than that the only way a carer will stop caring is when the person they are caring for is no longer around – an outcome none of us want to think of.

Does the average Australian give enough credit to an everyday person who has given up their quality of life to ensure that their loved ones are cared for appropriately? No. And that is reflected by the state of carer payments.

Does the term “carer” equate to “unemployed” in the opinions of some?

Yes.

Professor Robert Cummins (Deakin University) says of the results of his study into carer wellbeing: “We have been doing research in this area for more than six years … and I’m not aware of any group that has ever been found to have a wellbeing score as low as carers”. Professor Cummins also said that the average wellbeing score for Australians sat between 73 and 76, while the average score for carers was 58.5; for those who resided with their frail, disabled or mentally ill spouse, parent or child, the score was 58.4.” What do you think contributes to this? Most carers don’t choose to be carers. They have the job thrust upon them when something causes their loved one to require care. I think that the lack of choice, coupled with the restrictions imposed upon then as a result of caring, result in lower wellbeing. Carers are isolated, and live on a wage that is lower than the federal minimum wage, they work when they are sick, work overtime, and they feel guilty when they take time out for themselves.

When you describe yourself as a carer, have you had the experience where people assume that James is disabled or mentally retarded? As I mentioned earlier people in Tassie assume that I am a worker in a nursing home when I say I am a carer!

How much of your day is taken up by carer responsibilities? All of it. Even when I am doing other things I am thinking about James, what his level is, what he is doing, what he has eaten, why he is quiet, did he have his tablets?, when did I last put his eye drops in and therefore when is he due for more eye drops, did he bolus for the food he ate, is his infusion site working, when does that need changing again?

Do you think James is aware of how much stress, time and commitment is required to perform you daily duties? Yes he is. I try to make sure he knows… in a way that doesn’t make him feel bad about how much stress I feel.

Have you ever had someone flat out disagree with your knowledge of diabetes and how it affects James? Yes. Especially disagreeing with my knowledge. Being a carer in a nursing home was frustrating as the RNs had the final say and would question my ability to treat hypos in the elderly residents. I remember once being on nightshift and having to argue with the RN on duty to perform extra BSL checks overnight on a resident who had just started a new long acting insulin. She refused to believe that I knew anything about the insulin – even though she knew James has diabetes.

When you have concluded reading this interview, Liz has probably performed one of her many duties that so many take for granted. Her mind may be racing with thoughts of how the next hour will pan out. It’s NEVER ENDING. There are no holidays, no time off, no special privileges.. it’s a constant battle against the revolt in James’s body that causes these reactions to occur. At the age of 26, Lizzie is nothing short of a heroine that I have grown to admire and cherish.

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Project365:Australia-Day 34:Diabetes Australia Comes To The Rescue

One of the most frightening experiences concerning Type 1 Diabetes, excluding severe hypoglycaemia, is Sick Days.

Lance has generally excellent health, he fights off viral bugs very quickly, and any sores or cuts heal in a matter of days. The only thing that I have NO control over is a vomiting virus.

We have had one severe vomiting virus each consecutive year since Lance was diagnosed. With each episode, I am totally pre-occupied with monitoring blood sugar levels, giving hourly shots of insulin, comforting my ailing patient, taking his temperature, administering Panadol or Maxolon Syrup, cleaning up projectile accidents, remaking the bed with all new linen, checking for ketones, offering jelly and ice blocks in a desperate attempt to get my son to consume some easily digested carbs, keeping in check with the doctor, getting the pharmacy to deliver  Paedolyte iceblocks because the stock I had on hand are out of date (arg).  Last year, I was as delirious as a cut snake, as a result of no sleep and very little food. I emerged looking like I had been a contestant on Survivor: The Australian Suburbs for a month.

I fight so hard to keep him out of hospital and put on a drip, because it distresses Lance so much with the drips and the injections and the bright lights. I can’t stand to see him so traumatised. So I put in the long hours and become a prisoner in my own house. My only source of contact with the outside world is the telephone. If I do use it, the conversations are to the doctor, the pharmacy or the Diabetes Educator-really stimulating and exciting people to talk to about such a riveting matter.

Recently, I found some new information in the Diabetes information section at the pharmacy. I was so ecstatic to find a comprehensive, foolproof guide about how to handle sick days from home! It talks about giving mini shots of glucagon if you are worried about a hypo as a result of lack of carbohydrates. It has suggestions for what to do if your child is 14mmol/L. Or 4mmol/L. It’s just an all round excellent piece of literature that everyone should own or know about.

In this photo is the fold out copy of Guidelines for Sick Day Management for people with Diabetes.

Information about Sick Days-no more sleep deprivation!

Diabetes is a risky and dangerous condition to have if you are sick with a virus, especially a gastro bug.  Blood sugar control is an additional worry to be concerned about, as it often becomes high and difficult to control when there is an infection or illness in the body. If  a person with Diabetes is too high for too long, or has minimal insulin in their blood, they are a high-risk candidate of a life threatening condition called Diabetic Ketone Acidosis. (DKA).

Diabetes Australia has produced and distributed a fantastic guide concerning how to care for somebody with Diabetes who is ill at home.

Organisations like Diabetes Australia make living with Diabetes so much easier through their information sheets and webpages. You can find out a lot of useful information just by making a phonecall or going online. Even a fold out piece of cardboard can be supportive and comforting when you have a sick child with Type 1 Diabetes. Every now and then, there is updated information or new innovations regarding diabetes care that is put out by DA.

For online information regarding Diabetes Australia, click on the link to find out a list of services and advice.

Insulin is not a cure.

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