Diabetes Wise

I Missed It... Because I Was Missing the Point

D-blog day: I missed it.

And every other day for the past two months as well.

I've been busy doing a whole host of things, many of them really exciting and positive. But underneath it diabetes has been wearing me down. For some reason I've engaged in battle, a battle I know I can't win because I know diabetes won't just go away, silently and alone without sharing my feelings here or anywhere else. I've been wallowing in a loneliness not borne of having no one around me, but of having no one to share diabetes with.

I know, I only have myself to blame for being so daft!

I lay in the darkness on the floor of a house in Falmouth, Cornwall, last weekend, listening to the slow even breathing of sleeping people around me. I wasn't sleeping as inside me a tide of rage bubbled angrily and excess glucose coursed through my veins. The anger felt so strong that I physically placed my hand over my mouth to suppress the scream that threatened to release my pent up fury. Fury at the blood sugar of 17mmol that wouldn't come down. Fury that diabetes had had to repeatedly get its voice heard during a weekend away with friends that should have been simply fun and carefree. And all the while a guilty little voice was picking away inside me, nagging that the coke with those Vodkas wasn't diet, that maybe I shouldn't have had a slice of birthday cake despite it being the 30th birthday of a very good friend, that maybe I should have made the time to test my blood sugar just a little more often. I take my eye off diabetes for just one moment and it fights back, showing me who is boss.

Several weeks back I forgot to take two hydrocortisone tablets in a row. Forgetting just two doses of a tiny, bitter, white tablet was enough to send my blood sugars so low that I passed out on the number 42 bus, and was found by the driver at the end of the line, slumped in my seat with my clothes drenched through by my own sweat. The lack of cortisol had sent my blood pressure so low that the paramedics couldn't read it. I take my eye of my medications for just twelve hours, and my body gives up.

And all the while I can't help but feel desperately frustrated by, and even resentful of, people around me. The people I encounter who have diabetes themselves, and should 'get it', but have no care for their own health and are dismissive of my attitude to mine. The friends and the people who just simply don't get it. And perhaps worst of all I'm frustrated by those who have a little knowledge. These are the people I find myself hiding my blood glucose test results from, even when they show an interest as I prick my finger, because they know enough to understand the result, but not enough to understand that highs and lows happen. That they aren't all down to something I did wrong. They aren't all my fault. So I hide my results and most of all, I hide my feelings from these people that I fear might judge me as a failure.
Because I'm also tired of the educating and telling.

The more lonely I have felt in dealing with diabetes, the more I have retreated away from the D blog community. It is easy to find excuses. Like: The simple excuse of "I don't have time right now". Like: If I don't want to think about diabetes, then I'm sure not going to sit down and write about it. And rather like with recording of blood sugars, the longer I've gone without blogging, the harder it has been to return to it.

I've been blankly staring past the obvious truth of the matter: That all the things I'm most frustrated about and that drive my sense of isolation and loneliness don't apply to the D-blog community. Because you are the people who do get it.

The very people I shouldn't be hiding from.

I may be on a different continent to the overwhelming majority of D-bloggers but, despite my occasional feelings of isolation due to the lack of other UK bloggers and the general disinterest and apathy that represents to me, there aren't really any borders, boundaries or oceans where blogging is concerned. We're all one family, and I should have been here saying that on November 9th.

I guess it is my testament and tribute to the group that I have faith that despite my prolonged absence not only from my own blog, but also from the reading of and sharing on the blogs of others, I will still be welcomed home.

This is a community that deep down we'd all rather not belong to, but if we have to have diabetes at all, I'm so thankful that it exists and that there are so many others out there who always understand and frequently share my feelings.

Adventures in Hospital

Diabetes-wise my recent hospital stay was interesting.

I slipped back into a cycle of intractable lows, some causing seizures. On admission I was wearing the Guardian RT with a four day old sensor. Since the sensors need to be refrigerated, I obviously didn't have a spare with me. Given the shaky state of my diabetes control, given that severe vertigo and photophobia made it impossible for me to test my own blood sugars or read my pump screens, and that relying on hospital staff the test my blood sugar frequently enough made me feel uneasy, I wasn't going to take it off. I was grateful to the descending tone that accompanies low alerts to warn me of appraoaching problems without me having to even look at the monitor. I was grateful for the warning it gave me to ask for help when I needed it. I managed to make the sensor last 11 days, and only took it of at that point because I was having an MRI scan.

I was blessed with a couple of great nurses, who I quickly trained to read the numbers off the Guardian to me, and I was even able to talk one of them, from memory, through programming boluses and basal changes on my pump. He listened carefully - wanted to learn and help me make it work. He gave me all the time it needed.

Some of the staff were not so great. None quite match up to the idiot nurse I had when recovering from my ankle surgery in June who refused to give me glucose powder dissolved in water when I had a blood sugar of 2 (36) because "you're diabetic and sugar is bad for you. It will kill you." I kid you not. Yet he was quite happy to give me other things which contained sugar and went on tell me that he had a degree and knew what he was talking about. I retorted that I have two degrees and in future would he not call be by my first name but address me as Dr. follwed by last name (a title I am legally entitled to use, although in practice rarely do). That eventually shut him up.

This time around was not quite so bad, but almost.

On my last night in hospital, a night that I hadn't wanted to stay, but had been coerced into doing so by my diabetes consultant I was utterly exhausted. If there is one thing a hospital stay isn't, it's restful. I was relying on staff to check my blood sugar every two hours as requested by my consultant.

It didn't happen.

The last check performed was at midnight, which as around 4 (72). No one woke me and told me that or suggested that I eat a snack.

I woke with a pounding headache at 6.30am and checked the blood glucose log sheet to find that no tests had been done. A quick test with my own meter revealed 2.1 (36)

This is where it gets good.

I called a nurse and told her the number. She dutifully wrote it down and turned to walk away.

"Erm... I need some glucose." I said

"Oh. You want some Lucozade."

This was hardly a matter of want. This was definitely a matter of need.

She reappeared a few minutes later. "We've run out."

"OOO...Kay. Could I just have some sugar in water, or some glucose gel or something?"

"Hold on."

A couple of minutes later she's eventually back with a tube of glucose gel, which I swallow. Ten minutes later my blood sugar is cruising back up and I pull the sheet over my head and go back to sleep.

It seemed this little event had at least alerted everyone to the fact that they'd forgotten to check on me through the night. Around 45 minutes later someone was shaking me awake.

"Caroline... Caroline. We've got you some hot chocolate. You've got to drink it."

I thought I was in some weird dream. At half past seven in the morning this strange person is leaning over me with a small cardboard cup of steaming chocolate telling me that I must drink it. I was having trouble making that compute.

It turns out that on re-testing my blood sugar as I slept, they'd found it had dropped back down. Now out of not only Lucozade but also glucose gel, their solution to the problem was to make me drink hot chocolate.

What?

There were many more sensible solutions to this. Borrowing Lucozade or glucose from a neighbouring ward, dissolving sugar in water or even just bringing me my breakfast which was due round pretty soon anyway.

But hot chocolate?

One of those small cups has around 5g of carbs in in. It is boiling hot, necessitating at least a ten minute wait until you can drink it, and when you finally do the fat in there retards the absorption of the meagre carbs anyway.

Even a little hypoglycaemic I could work this out. And I was stunned.

Later that morning when my consultant paid me a visit, I guess I took it out on him.

He's a lovely guy. In fact he has only just become a consultant, and I have known him for a long time wile he was still training. I have a lot of respect for him.

"I would have been a whole lot better off at home last night" I said. "I can give you a list of reasons why."

I told him about the failure to check my sugars. How if I had been at home I would have had the benefit of the Guardian RT alarms, plus setting my alarm clock myself for every couple of hours. I told him how I would have had several sources of glucose, plus long acting carbs available. How I could have eaten a bedtime snack. I told him how being able to eat decent food - food that I wanted, when I wanted it - might be very helpful in preventing these lows anyway. I told him how I would scream if one more member of staff referred to my pump as a sliding scale, and asked me when I would be coming off it - as if returning to injections signified something good. I told him the bottom line: now past the acute illness, I would feel safer at home.

He listened very patiently. Let me tell it all to him.

Then he thanked me.

He thanked me for highlighting that there was still a huge misunderstanding about pumps within the hospital. He thanked me for bringing the ridiculous hypo treatment protocols to light. He agreed that it simply wasn't good enough. He even said it would be better if the hospital was able to get RT sensors for patients who come in wearing the RT, even though they are currently rare. He agreed the RT was good for me right now, which is a breakthrough where it is still largely greeted with scepticism. He took out a piece of paper and carefully listed the concerns.

He promised to address them. To try and make something change. So that if I return, I might feel a little bit safer in my bed.

I know he faces a huge task to try and effect change, and I won't be surprised if it doesn't happen. But his willingness is what counts. The fact that he always listens, treats me like an equal even when I'm losing it with frustration about diabetes and doesn't judge me for it.

That is what I call a star. I just hope he knows that I think that.

 

Home From Hospital; Or is Hospital Becoming My Home?

I think the title says a lot.

Maybe the details don't really matter.

Or at least the details of what happened to earn me another nine day stay in hospital. Suffice it to say I was very ill.

The deatils of how I feel about it?

I guess they matter to me.

I'm frustrated by my continual ability to succumb to illness, to completely lose control and to need to depend on others to fix it for me. I'm frustrated with a body that keeps letting me down and making this happen.

I know.

It's not my fault.

There is nothing I could have done to manage this alone, or to prevent it from happening.

But that doesn't make me any less depressed about the whole thing.

Dispatches From the Hospital Frontline: Failure

Ok, not quite true. Not literally from the hospital.

Fortunately I'm at home right now despite the planned 24 hour stay in hospital for the surgery on my ankle turning instead to five days. (Plenty of stories for another time)

Then, Friday night saw me in the Accident and Emergency Department of St. Thomas' Hospital. (Before anyone gets picky about my punctuation, that is how they spell it.)

I was feeling generally lousy, with throbbing pain in one of my six inch incisions, (I'm going to look good in sandals!) a feeling like a red hot poker was being shoved under my plaster cast, and with blood sugars that stubbornly refused to stay down despite three times my usual amounts of insulin and all the usual pump problems excluded. The logical step was to get the cast off and check for wound infection.

So I spent a couple of hours in the stuffy waiting room with an assorted variety of drunks and fight victims for company and the Poland vs Ecuador World Cup match on a giant screen: a reflection of living in a football obsessed society!

The good news: no wound infection.

The bad news: I was heading for DKA.

Ten seconds after uttering the words "I feel like I've got an amazingly high blood sugar" the reply came "You're not wrong"

22.2 (400)

And I was spilling ketones.

The doctor was lovely. Efficient, but with enough time to listen and be compassionate and empathetic. She was also very insistent: I'd be better off on an intravenous sliding scale. That is when the tears started falling.

"I don't want you to do this" I insisted.

"Why not? It's the best thing for you right now."

"Because you putting me on a sliding scale is like telling me I'm a failure. Diabetes is my job. It's what I do. It's my job to manage it, keep it under control. If you take over, I've failed."

"But Caroline, everyone needs help sometimes. Getting help isn't failing. You're not a failure"

But sitting in that curtained cubicle, listening to the drunks arguing loudly with staff outside, hearing bleeps of machines somewhere in the department and the distant ringing of a telephone, I felt totally overwhelmed. Totally out of control of my diabetes. Out of control of what was happening to me.

It was a horrible feeling.

I hated myself for feeling it, but I still felt that I'd lost the battle that night and diabetes had won.