Wednesday, 14 December 2011
Saturday, 5 November 2011
Monday, 31 October 2011
Sunday, 28 August 2011
Nothing too dramatic to report really. I've left my job so I can go to university in a little over three weeks from now. My nursing degree starts on the nineteenth of next month. This is strange. I'll be a student again.
As for the diabetes, well, things have been a bit interesting. I've had a hatful of dodgy cannulas. I seem to have a knack for finding the viens in my abdomen, that or my cannulas have the idea that heading for a vein is the best thing to do. A few days ago I had that happen twice in a row. I was not best pleased to say the least. There are things that need looking at. For example I need to see if I'm either hypoing and rebounding which is sending me high at about eleven in the morning or whether it's my insulin to carbs ratio that needs checking. Looks like I'll have to get myself in order for a three in the morning until midday basal test. Yawn. I had things rather nice up until a few days ago.
Camping. Yes, camping. I've done a bit in my time but this one was different. It was with my Mum and sisters. We were living in a caravan for a week. Diabetes wise I was pretty good despite large amounts of food consumed. The one real issue was a failed set that went tits up in the early hours. I didn't spot that until later in the evening. Not a great idea. Other than that it all went well.
Normally at this time of year I start to get letters inviting me to attend a review clinic at the hospital where I'm treated. Sadly I've a very strong feeling that I'll get those letters when I've moved to university and thus won't be able to attend. It is a bit of a trek from Oxford to Eastbourne and back. Let alone the cost of the train fare. Oh well, I'll call them again on Tuesday as Monday is a bank holiday. Sort out something. More news on that when I get it.
Humalog. Yes I like it. The new poison is very much welcome. It's not overly different but the psychological difference that the change has made is quite something. That and it's acutally easy to draw up a reservoir for my pump from the humalog vials.
That's all for now folks. I'll post more sooner or later.
Monday, 11 July 2011
Now I don't get upset about the occasional high. Far from it. However this time is different. I've been getting upset about it all. I can't find any reason for the highs that I've been getting. I feel fine and I'm totally well. As a result I've got to run a temporary basal of a hundred and forty percent and loads of corrections to maintaint decent control. It's really getting to me. I'm just so fed up with it all. I want out. End of moan.
Monday, 20 June 2011
Today hasn't been too bad. Well, It could be worse. I was fine when I woke up at three this morning (BG of 7.5) but when I awoke a few hours later (ok I got up at ten) I had a 12.7 which was something of an irritation as I've been going to bed on decent levels and waking up very close to the level I went to sleep on. Secondly I thought my pump was going to pack in. Fortunately it hasn't packed up. After a bolus not going too well because the pump was giving off very unpleasant sounds I phoned Medtronic. After a rather panicky conversation with the lovely woman at the end of the phone it has been found that all is well. I've just changed cannula and gorged on ice cream. I can't be arsed with testing my BG for a while now. I just want to get today over with! That and I just want to forget diabetes again. Some bloody chance.
Friday, 17 June 2011
A little while, when I last saw my DSN (see post The King is dead, long live the King) ago the decision was made for me to switch from Novorapid to Humalog. I picked up the first vial of that today. Tomorrow is the big day as I've got enough in my current tank to last me until tomorrow morning.
It'd be fair to say that I'm a little nervous of this change to Humalog. I suppose the change is a good thing. At the time the decision was made I was having a rough time of it on the Novorapid. True to form, things are now behaving prior to the big switch. I'm more scared of having to make changes that I suppose will be needed with a new insulin. Just as things were getting good.
I'll make the change tomorrow morning. New reservoir, new set and, most important of all, new insulin. I suppose I'd best start with a completely fresh everything really. I'll be using a Sure T set as well, those just don't fail unless you're really, really special. I've yet to meet someone whose skin has caused a steel cannula to kink.
What the more shrewd amongst you may notice is that I've filled up a reservoir. The change is more than twelve hours away. I always pre fill my reservoirs as I find that I get fewer bubbles left in them if I leave them to stand and the bubbles dissapate. It's like leaving a pint stood at the bar for too long, all the fizz goes. Not desired in beer but most certainly desire in my pump reservoirs.
I'll put something else up after a few days on my new poison. This'll be interesting as I wonder how long it'll take for the dregs of the Novorapid to get out of my system and for the patterns of the Humalog to make themselves known.
Wednesday, 15 June 2011
09:44 - 6.7
10:25 - 6.5
14:16 - 8.5
20:23 - 6.2
23:15 - 5.0
23:45 - 4.8
I'll be buggered if I know how I managed to do that so here's what I did in the day.
Woke up at quarter to ten then went back to sleep until half ten. Massive breakfast of beans on toast smothered in cheese. Arse around and watch TV.
Quarter past two I ate lunch. Two rather large sandwiches and a monstrously sweet cup of tea. I used a take on the super bolus way of doing things. I gave my usual bolus for the carbs that I had plus a small correction to take things down then I put on a temporary basal for an hour and let it roll. I wandered into town to go shopping after that. It's not usually a BG friendly activity as I tend to get rather stressed and fed up with shopping after all of five minutes. I managed to waste a few hours and eventually (after much swearing and moaning) but eventually got what I wanted. Then I went to the pub and chilled with a few friends who I used to live with last year. a few pints of the great Sussex relaxation aid Harvey's Sussex Bitter. God I could live on that stuff.
In my last post I moaned about how things just weren't going overly well. I suppose I just needed to kick back and live life without diabetes being at the helm. I suppose the point that I'm trying to make is that whatever we do to stop diabetes from getting to be the forefront of everything it still manages to get there from time to time. That's when we need to step back and take a miniature holiday from the D. Well, I say a holiday I mean taking it easy for a little and doing anything to take the D from the front of my mind. I reccomend a few pints of the aforementioned Sussex relaxant. Does the job everytime especially if you choose to take it in the sun and beautiful surroundings of a pub garden. Always needed.
Sunday, 12 June 2011
Leaving things for tomorrow, so to speak, has it's pros and cons. Firstly, my 15 mmol/l won't drop as quickly as I'd like it. Then again, the stress that it brings about would make it harder for things to drop so to avoid some stress I've just given in to eating as not eating drives me up the wall and therefore makes me stressed.
I've corrected the BG of fifteen with five units. In theory that'll make my BG drop to five but now that I've eaten, it won't happen for a while. What else have I done then you might ask? I've whacked on a temporary basal of two hundred percent in an effort to bring things down. This'll help things drop quicker. If it works it'll be nice but I've a sneaking suspicion that it won't be working. Hope for the best and prepare for the worst. I'll be loading up a reservoir with fresh insulin and finding a set to use instead of the current Silhouette that I've got in. Probably a Sure T as those just don't fail. A Quickset is also an option as I don't really have trouble with them so maybe that's on the cards.
Tomorrow I will pick up the diabetes ball again even though I haven't really dropped the ball today. I just want to put in less effort. Every finger prick is much harder than it was yesterday. Bolusing is just above and beyond the call of duty. Even so I'm still doing it. What I'd give for a day free of diabetes... I'd almost settle for a day of decent bloods with little or no effort. I don't allow myself to dream of that much at all because it tends to get me down. This is the disease I never asked for nor wanted. It is Moriarty to my Holmes, my perpetual nemesis who I can never vanquish, merely stay equal with.
Thursday, 9 June 2011
The question is that of need versus that of want.
Now in the fluffy bunny, hippy loving world that the small, repressed and generally hated part of my mind that is rarely let out of the box we would all have what we needed to manage our D to the best of our abilities. However, the part of me that is usually expressed knows full well that this is never the case in the NHS upon which we so readily depend and love.
I would love a CGM. This is something that most of the folks across the pond have seem to be able to access this wonderful technology with comparative ease. The same goes for pumps. On the other side of the pond in The Sceptered Isle we go through hell high water to keep outselves in decent nick. Now, I am well aware that I have had a damn easy ride as opposed to some (see Siobhan at Click Of The Light for further detail http://clickofthelight.blogspot.com/)
Back to the point in hand. I would love a CGM given the amount that I believe it would benefit me. As it stands there is nothing like the NICE quidelines which exist to make insulin pumps available to all who need them (well that's the theory at least) there is nothing like it for CGMs.
Now a CGM is a very gucci piece of kit which serves a very good purpose. I would love to have a twenty four hour picture of what my BGs are doing. That and I would love to see what they are doing on a screen without stabbing myself. Now I do know that a CGM is not a replacement for BG sticks. It would be a hell of a help given the line of work that I am going to go into. Nursing is a hell of a job it's demanding. Then throw in diabetes. When you combine the two you need every little bit of help that you can get. A CGM would help me so much. It would give me so much more information as to what happens to my BGs during the thirteen hour shifts that I do at work. Remember, a BG stick is but a snapshot. Basal testing is the most impractical thing when I am at work for many reasons. I need to see trends so I can have a good chance of getting a basal sorted for work so I am less at risk of hypos and that type of things. At the end of the day, I am a liability if I am not in decent control of my diabetes. I can get days with decent control and some when it's night on impossible to maintain control. A CGM would do very nicely at keeping me in check or helping me to keep in check. If I find a CGM friendly consultant I will happily play the patient safety card to get what I want. At times, I wish I had some form of health insurance that would fund this for me. If I had the money, I would self fund it. However, on a band two NHS salary you can just about live let alone fund that sort of technology. At the end of the day I want one of these things because I have that thing that most men have. Gadget fever. That and I'd like to maintain good control over my diabetes. I need one because I want to be as safe as I can be in terms of diabetes in my chosen line of work, nursing. I suppose the need is greater than the want which I have for this technology. Only just. As with everything pertaining to diabetes it is always a balancing act, albeit one from hell.
Thursday, 2 June 2011
There are many reasons for this. One of the key reasons is that my basals have changed so vastly since the last time that I saw my DSN, as has my insulin to carb ratio. We're begining to think that my body has started to take a set against the Novorapid, which I hasten to add I have been on since 2002 or 2003 when I started using it in pens. I believe that it came out onto the market around that time too. My DSN also uses Humalog in his pump. It's supposedly a little more pump friendly than Novorapid. I don't know if it's possible to start to become resistant to a certain insulin but it does feel like this is happening with me at the moment.
I've also got to refine my insulin to carbs ratio. the rough cut has been done, so to speak, by putting me onto the one unit for every seven and a half grammes of carbs. I've a feeling that I might be able to get better post meal results with something like one unit to eight to nine grammes of carbs. Well, I say better results, I mean the two hour post meal readings are pretty damn good, almost too good at times. I also appear to be able to drop into a few hypos about three hours or so after meals. I do love low readings post meal but when they are so good they make me think I'll hypo, well, things need to be done. I'm almost due a check two hours after my lunch. That and I'm planning a little bit of a basal test this evening. Nothing like getting it all done at once eh?
Monday, 30 May 2011
So what've I done to crack the nut? I have changed my basals overnight to counteract waking up high. I can now go to bed on a reasonable level of say a six or seven and stand a decent chance of waking up on much the same number. I know there will be some fine tuning to be done but, the hard part has been done. The next thing that I've done is change my insulin to carb ratio. That's because I found my BG rocketing up to the high teens or so after each and every meal, no matter how much or how little carbohydrate I had. I now use one unit for every seven and a half grammes of carbohydrate. That's quite a change from my old one unit for every ten grammes. It also means that for the first time ever, I am actually using the bolus wizard gadget on my pump. It's a necessary evil as I can't damn well do the maths to work out my doses in my head. One unit to ten grammes was nice and simple. Here it gets sticky. Here there be dragons. That said, I shouldn't moan too much. It works and I'm not about to bugger about and change it.
After all this tinkering I am a bit fed up with the D although I am now rather less stressed because it's all going well at last. Now to see how long this thing lasts before I have to make more changes. That and the fine tuning of my overnight basal. Did I say something about being less stressed? Oh bugger...
Thursday, 26 May 2011
Here be the results:
So, what might I draw from this? Well, the drop from 03:00 to 04:00 is quite worrying. This could go some way to explaining why I have been waking up high every morning. What I believe has happened is that I have gone to sleep on reasonable levels of about six - seven millimoles per litre and then because of too much basal I have ended up dropping into a hypo. My body has then flooded my system with glucose from my liver which was released by the hormone glucagon. That would cause my BG's to rise uncontrollably because my non functioning pancreas can't compensate for the glucose as it doesn't produce insulin! So changes are afoot.
On another point, I have also sussed why I am rocketing up to the late teens post meal. This seems to be because my insulin to carbohydrate ratio is out at all times. This was reinforced by my two and a half hour post breakfast reading being eighteen millimoles per litre. So what have I done? I've changed my ratio for the entire day from one unit to ten grammes of carbohydrate to one unit for every seven and a half grammes fo carbohydrate.
Now this does get to me a little bit. This is because I loved the times when I had a nice and easy ratio of one unit to ten grammes. That made life very easy in terms of bolusing. I could do it nice and easily. I didn't have to think over much nor did I have to use my bolus wizard. Now that's all changed. I have to use the bolus wizard as I can't work out the doses from that ratio in my head. It's irritating but I have to get on with it. I'm sure I'll get used to this but for the moment it's really doing my nut in.
Wednesday, 25 May 2011
What's hard to accept is that only a week or so ago I was waking to pretty damn good numbers. Now I'm waking up high again it's hugely irritating. What really gets me is that although I may have cracked my basals one day, the next day things will change totally thus ruining a good work. All that I can liken things to is an artist in the midst of creating a master piece then being obliged to wipe down the canvas because a bird has shat on it.
I suppose that after nearly fifteen years of diabetes I should be well used to this fact. I believe that I am. Now that I pump the changes that can be brought about at a moment's notice things seem to be somewhat more palpable and they seem to make a greater splash.
So what's the result of all this you might ask? Once again I will be basal testing from midnight until I give in to the desire for a massive cup of sweet tea tomorrow at some stage. Ideally I'd like to go from midnight tonight to midday tomorrow and have a massive basal test. Now people who pump themselves know that a basal test is simply not as easy at it sounds. Laying off carbs of all sorts for any period of time isn't the only thing you have to do. That's the easy part. The hard part is timing any carb intake (aka a meal to those without D) prior to the basal test so that your insulin that you took for the carbs has left your system before you get cracking. So for me, any bolus that I take for carbs has to be taken at least five hours before the test is due to start. That is because the insulin I take in my pump (Novorapid) stays in your system for five hours or so. At least that's the idea.
So, by the time the eighty minute whistle blows (yes I do like my rugby) it's not just a simple question of forgoing any carbohydrate for a period of time. The bad thing is the logistics of preparing for the test. It's not fun. Then you have to take into account that if it's a night basal test you'll be waking up every hour, on the hour for the duration of the test. Fuck this for fun. I'll post the results when I re surface after the test tomorrow.
Sunday, 15 May 2011
03:00 - 7.8
04:00 - 7.8
05:00 - 6.3
06:00 - 6.9
07:00 - 6.7
08:00 - 7.3
09:00 - 5.8
Now I like those results quite alot. I don't think I'll be making any changes based on that. It'd be daft to trash a good set of numbers like that. All I need to do now is basal test the evening. That's the plan at least.
I have made some changes to my basal in the evenings. That's because for two or three days I was getting hypos between about half eight to ten where I would hypo quite nicely, well, what's nice about a hypo? Anyway, I was dropping down to about two millimoles per litre and not coming back up for about an hour despite all the treatment that I threw at the hypos. If I recall rightly I've slashed a good quarter of a unit of my basal rate prior to nine o'clock. Quite a dramatic change if ever there were any. It seemed to knock it on the head last night. I'll be basal testing this evening as I mentioned earlier so I can do some fine tuning. Seems that I need to get this right. That and I can have a stab and getting a half decent basal pattern sorted for my work.
I'll post the results from the evening's basal test when I've done it.
Saturday, 30 April 2011
Thank you Kiss. Gotta love a bit of glam rock.
Given the nature of my work there is always the obligation to do night shifts. The first one was last night. 2000 start, 0800 finish. Now, to say that I was a little nervous would be fair as I've never done those before. That and I was rather unsure of the effect on the diabetes.
Fortunately, the shifts and colleagues are lovely. The work is easier than in the day and you tend to learn a little bit more easily. Any opportunity to learn is a good one. It's also very nice to put names to the faces that I see at eight in the morning after starting a day shift.
As for the diabetes aspect of things that was lovely. I spent most of the night with BG's in the sevens. There was a slight hypo at five ish. Abnormally for me, I didn't test but trusted in my senses for once. I suppose that the acuity of my hypo awarness increases in the hours of darkness. After getting home my BG was 6.9, I had something to munch on. A few hours of sleep later I awoke for something to eat. My BG was 8.5 prior to that. Overall, the BGs have been behaving nice over the night. What seems to be increasingly common is that I require a temporary basal on for the entire day. About 125% is roughly what I've been on for the past few days. I can't quite fathom why but I'll keep on going with that as it seems to be working. AnythingtobringdownmyHbA1c.com.
Wednesday, 27 April 2011
My new method of cannulating myself. Note best mate behind to give support and commentary to the paying public.
So, today has been a pretty good day bar one thing. Since about midday my BG's have been steadily sat at around 12 mmol/l. Nothing too dramatic about that bar the fact it was over an extended period. What did I do? I decided to change my set. Turns out my Sure T set had found it's way into a blood vessel. That's why I was flying a little bit higher than usual. So I went to change it. The first time I managed to get it in without much pain at all. Then the problems came. I noticed that there was blood backing up the little part of the Silhouette set that you can see. Not a good sign. I took it out. Bad move. I took it out and blood just gushed out. I had to grab a load of swabs that I'd found in my uniform after a day at work. I ended up holding that thing to my side for a good five minutes to stem the flow. More irritatingly I've got blood on my beloved Iron Maiden T shirt.
Tuesday, 26 April 2011
Interestingly in the most recent issue of Private Eye (issue no. 1286) Medicine Balls focuses on diabetes. The column highlights the short fallings of diabetes management within the NHS. More precisely it highlights the post code lottery that is to be found in all aspects of diabetes care. The distinction between type one and two is a little blurred but is there none the less. However, there isn't a distinction between adult and paediatric care.
What the column does highlight is the lack of education amongst general nurses on a ward about diabetes. Now, I am fortunate to say that the nurses I work with are diligent in their duties. As the article highlights, there are some aspects of diabetes care that are beyond the capabilities of a general nurse. For example, a patient with an insulin pump would most likely be beyond their capabilities. The number of diabetes specialist nurses available to a hospital is rather limited and they can't be everywhere.
What is well known to the bunch of insulin armed lunatics known as the diabetic online community (DOC for short) is that good education helps to prevent further complications. Carb counting courses and a supportinve team to name but two of the essentials. Surprisingly some trusts do not provide these when the costs of running them are much cheaper than the costs of treating complications which are nasty and of many variety.
It's a bitter epitaph then that Medicine Balls leaves us with that points out should a small improvement be made in the way diabetes is managed could save enough to fund universal health care.
The article cites the Diabetes Inpatient Audit. (www.yhpo.org.uk/Diabetes_inpatient_audit)
Friday, 22 April 2011
So, how does it affect your life? Well, for each person it's different. For me well, it's affected my choice of career and many other parts of my life.
Career choice you ask? Well, at the moment I'm working as a health care assistant in my local hospital. In essence I am the nurse's understudy. Although the job doesn't sound glamorous, wards wouldn't work without HCA's. Simple. So how does this have anything to bear upon my choice of career you might ask. That's something you're more than entitled to know. I have always admired the way that my DSN's have worked with such devotion to my health care. If I can ever be half as good as they are, then I will have done well. So then, I think that you may well be able to deduce that I am looking to become a nurse sooner or later. Those of a Holmesian nature reading this blog are correct. I'd love to do my nursing training. However, since starting my current job in January of this year I feel less like I want to be a DSN and more of a general nurse. Should I find myself doing DSN work then that'd be nice. However, should I find something more interesting along the way then I'll crack on with that. Simple. I see enough about diabetes in my current job. I also see how poorly educated some patients are in their own care and what they can do for themselves. They have been let down by the system. Something within me wants to buck the system and change it all for the better. Then again, I can't do that as alot of the patients who have poor care are type twos under the care of a GP who sees them ever six months and does sod all to help them. Then there's the knowledge that you can't save the world. No matter how hard you try, there will always be time when you can't win.
Am I defined by my diabetes? If you asked me the same question every day for a year you'd get a different answer every day. There are days when what I have to do in relation to my diabetes just sails on by and doesn't affect me at all. Then there are the days when it can be looming upon the horizon and it plays a reasonably large part in your day. After that there are the days when a good set of blood glucoses can make the day and in that same day one poor one will break it. Then there are the worst of those days. Those are the days when you can't do anything without diabetes seemingly getting in the way of things. There are the days that you hardly notice that you're diabetic. As hard as that is to understand, believe it or not, it does happen. Then there's the inbetween. Those days are the ones when you can forget diabetes until you're reminded that it's there through a hypo or needing to test before lunch for example. Each day with diabetes is different. They are often brittle too, with diabetes it doesn't take much for things to go wrong.
My social life. Now, not for a moment would I dream of my life without my friends of a very special circle. They are my pancreatically challenged friends. I really do love them all however, I do hate the fact that we only know each other because adversity brought us together. Then again, if it weren't for diabetes we'd all be totally ignorant of each other's existance. I've been very close with them over the past few years.
Now I feel like doing something for charity, which one? Well, for a pancreatically challenged mong such as I there is only one choice really. My favourite D related charity is JDRF. I'd also do things for mental health charities but the reasons for that will remain private. So yes even the part of me that likes to be a do gooder (rare as it is for me) will do it for diabetes.
Being a bit of a nutter. Now I do apologise for my behaviour on the last full moon. Yes, it does happen every month. Simple. Diabetes does make things a little different in terms of mental health. As it stands, diabetics are much likelier to develop depression than persons without it. That's the bad part of it. On the good side of things, despite being a few slates short of a roof you gain a certain mindset that is unique to those with diabetes. I can't quite explain it but it's balancing on the knife edge between being completely lost to insanity and the sane world. You develop strategies that are unique to the induvidual to cope and get through the darkest times. Anything goes on that account. Keeping yourself from cracking completely is quite an achievement. I've accepted that I'm not quite the full roof thanks to the diabetes. Being able to hold onto what sanity I have is a nice thing. Even if I do lose it from time to time.
To sum up then, pretty much every part of your life gets involved with your diabetes for a certain period of time and to different extents. The damage can be varied in extent and form but it exists none the less. How we react to that is what defines us. If, like me, you howl at the full moon the sectioning is quite a possibility, a fun one at that haha...
I must leave you now, it's close to midnight and he's barking at the moon!
Saturday, 16 April 2011
So, you think one set of changes would be enough for me. Seems that it isn't. That's because I've started doing long days at work this week. Those are thirteen hour days. Massive effort but I do like four days a week off. Those do need something of a basal to suit them. That said, I've got to have a baseline that I can work from as, each day can be very different. Some are absolutely hectic and you don't stop. Others are rather more relaxed. Then again, in the second type of day you're constantly waiting for things to happen so there is the element of stress which can really make things interesting as all D folk know. That's why I want a baseline that'll suit most, if not all days.
Here's hoping that my changes work, or if they don't work, that they don't need much fine tuning.
Thursday, 14 April 2011
That aside, it's been a a year since I started pumping. What's happened in that year you might ask? Well, many things. Both good and bad. For the good we have had my HbA1c brought down from above eight percent which it always was pre pump to the sevens (seven point one percent at it's lowest). I can tailor my basals to suit what I'm doing. I have a much greater range of freedom and I'm rather more at liberty to do what I want, when I want thanks to pumping offering me a "tap and go" lifestyle that MDI couldn't. I've found that only one type of cannula doesn't work which is a good thing. I've currently got a steel one in that needs changing.
In the bad corner now; my pump has failed and since been replaced. That sent my BG's up to the thirties and consequently, my HbA1c has gone up eight percent. I've had many a cannula fail on me. This is quite a drama but one that is easily rectifiable. I get caught on door handles which canbe rather painful. I have something attatched to me all day, every day. It can be quite something that.
Overall, I wouldn't go back to how I used to be on MDI a year ago. Pumping, for all the catches that can be found, is more than worthwhile. I love it. Now to pop to the GP and pick up my repeat prescription.
Monday, 28 March 2011
There comes a time when something happens for the first time. Since I've been writing this blog it's only been me putting pen to paper on here. No one else has written for me. Well, this is the first time that this has happened. Today's post is written by an ex colleague of mine who suffers from Kallmann Syndrome, another endocrine condition relating to hormones. When we worked together we frequently compared our respective ailments. Here's Neil's offering. Now for me to shut up and let him run the show for the evening.
The following quote was posted as a Facebook status by a colleague of mine with type I diabetes:-
“Dear diabetes, since entering my life in a rather forcible manner fifteen years ago, you have since been a most unwelcome guest who out stayed their welcome the minute they arrive. Now kindly do the decent thing and fuck off out of my life. I don't want to be defined by you anymore.”
This quote struck a chord with me. I don’t have diabetes, I have another endocrine condition called Kallmann syndrome. The above quote could quite as easily be attributed to Kallmann syndrome as it can diabetes type I.
Kallmann syndrome is a rare hormonal condition in which the major symptom is the failure for the patient to enter puberty or to fully complete puberty. Untreated patients would have very poorly developed secondary sexual characteristics and will almost invariably be infertile. It is also associated with a lack of sense of smell. The root cause is the failure of the release of the gonadotrophin hormones (LH and FSH) by the pituitary gland.
Diabetes is fairly straightforward to diagnose, even if doctors sometimes get Type I and Type II mixed up.
KS is harder to diagnose as it is normally a case of eliminating all other possibilities first. The biggest hurdle is getting a diagnosis when as a teenager you are constantly being dismissed as a “late developer”. There is no simple blood test for KS. It is not a widely known condition and diagnosis is often delayed well into late teens & early 20’s by which time the benefits of early treatment and diagnosis are lost.
Diabetes is far more intensive to treat, can be a major struggle getting blood sugar levels correct and can have serious complications, both short term and long term if you do not get the treatment right.
KS is fairly straightforward to treat in comparison; a lot of people with KS get a testosterone injection every three months and this is all they need. It gets a little more complicated if fertility is required, but compared to diabetes the treatment of KS is very simple. Testosterone, while an important hormone to have is not in the same league as insulin when it comes to its importance for day to day life.
In both conditions you are treating the symptoms rather than the root cause. You never cure either condition; you can only hope to control its effects.
In both conditions you are often left feeling tired & lethargic, either due to fluctuating blood sugar levels or very low testosterone levels.
In both conditions you sometimes have to deal with some medical professionals who have little idea or understanding of the condition. Knowing that Type I diabetics are not the same as Type II’s and have different needs & requirements would be a good start. It is the same for people with KS as most of us are seen by doctors who have not even heard of the condition and don’t know the full range of available treatments that are available.
In both conditions you are stuck with a condition you have little control over. You can’t really escape either condition and it is only really a fellow patient who can totally understand the problems you go through.
Just how much each condition defines our life is a debatable point; I think it varies from person to person. I think it is impossible to live with a condition such as KS or diabetes type I and not let it affect your life. However by talking to patients with other endocrine conditions sometimes you can get a better perspective on your own condition.
In my conversations with my colleague I think we can both safely say neither of us would want to swap conditions.
Here's the link to Neil's own blog site:
Sunday, 27 March 2011
What's made me want this? Well, first my pump failure not so long ago. Now I've got incessant evening hypos. I'd also like to add that and I've been waking up high for the past few days. That's really got to me as it was all so good until about a week ago.
"They stab it with their steely knives but they just can't kill the beast"
However much I want rid of this, I can't be rid of it. I'm constantly battling it. You can't win against it. You can only keep pace with it and hope that it doesn't over take you for long enough to cause damage later on. Sometimes I feel like I'm trying to keep up with Usain Bolt. I can't always do that. Well, I doubt that anyone can really.
"You can check out any time you like but you can never leave"
Well, in short you really can't stop being diabetic. No matter how much you want. The potential consequences are just too nasty to stop taking care of yourself. The risks aren't worth the potential reward. You can put diabetes on the back burner at your peril. I can leave it alone as much as is possible but I can't leave it in my locker when I start work. I can't leave it on the pitchside. It's there all the time and it stalks me all the time. It's a predator following my tracks in the snow, waiting for a moment of weakness in which to strike.
"It is time for us all to decide who we are. Do we fight for the right to a night at the opera now?"
What alot of health care professionals say is that we shouldn't let ourselves be defined by our ailments. When you suffer from something such as type one you cannot help but let it define you. I just want to be able to forget that I have it. I can't.
I'm always there. I can't escape it. Whatever I fight for now, the diabetes is always there. I'm surrounded by it. My many friends of the DOC (diabetes online community - in short a bunch of fucknuts with insulin and no sanity) may well feel the same at times. I'm always fighting against it. Everyone has their limits. I'm close to breaking point. I can't roll over and let the diabetes win because I've got so many resources at my disposal. I have a pump. I'm one of the few people in the UK to use one. This means I should be aiming high and hitting the spot. Far from it. I'm far from any good at the moment.
However much people say that some of it is beyond my control (pump knackering as few weeks back and the ensuing high BGs and reverting to MDI, albeit for a short while. The unpredicability of my job means I can't set a basal for it. That would be lovely. That's the world I chose to enter so I'm ok with that. What I'm not ok with is that I can't get it sorted. I can't get it right. That's another thing altogether.
Well, it has something to do with me being a perfectionist. It helps. It really does. Then it comes around and bites deep into you. The moment things start going wrong you start assuming the worst case scenario and then you act on it. The moment something strays out of the rigid lines that you set it wrecks the day. Sometimes when things stray high or low (well, with diabetes that means only one thing, blood glucose) and you react accordingly. Then it goes the opposite way. It's just so frustrating. If you managed to understand the last paragraph then well done to you. There's a job waiting for you at Scotland Yard as a code breaker. That or you'd have been deeply welcome at Bletchley Park some seventy years ago.
At the end of the day I'm just unloading. I'll be copying this onto a forum that I use as I can't be arsed to mash out all this again but on a different page. Same shit different day things.
Tuesday, 15 March 2011
What's happened is over the past few days I've been getting rather raised blood glucoses. I thought that was down to having an ingrown hair which was a little infected (I'm currently on flucloxacillin for that) and a chesty cough. It would appear otherwise.
So whilst I was getting BG's in the 20's and one shockingly making it to 30 I thought it was due to that. Turns out it wasn't that. It was due to my pump packing in over a few days. It makes sense as it explains why I'd gradually been needing to put on temp basals that were higher and higher.
What happened was that somehow, insulin had been leaking out of the reservoirs and had got into the electronics of the pump's piston. This meant that it wasn't working as it should. Therefore I wasn't getting the basal insulin nor was I getting the boluses that I needed. If I did get some insulin it wasn't all of what I needed. That sent me sky high. I thought it was a run of dodgy cannulas, this isn't unknown to me. Essentially what was happening is that the piston couldn't work nor did it drive out the right amount of insulin.
So what did I do? Yesterday morning saw me looking at the reservoir slot on my pump and noticing alot of fluid there. I took out the reservoir and about sixty or so units of insulin just splashed everywhere. I immediately phoned Medtronic. They got my replacement out to me today. I hooked it up as soon as I took it out of the box.
Whilst my pump was out of commission, I went back to MDI and had reasonably good glucoses for the time period. Only one hypo and a high glucose of 10.9. Pretty damn good seeing as I was under alot of stress owing to a university interview today and not having my pump which meant I had to dust off memories of MDI and how to inject myself.
It was rather odd having to inject regularly after eleven months of not having to do so. Very bizarre. However, seeing as that played a vast part in my life for the thirteen or so years prior to me getting hold of my pump, it was easier than I thought it would be to slip back into the routine.
Overall, I haven't come out of it too badly. All's well that ends well.
Saturday, 12 March 2011
So what's happened since my last post you hasten to ask?
Well, in answer to that there isn't too much. I've been at work for alot of the time. One migraine and now I've got the benefits of a vile chest and I'm coughing up golf ball sized lumps of phlegm every time I cough. I've also attended some interviews for my universities of choice. My desired course is adult nursing. I've got a few more to go but still, let's wait and see. I've also just shelled out some of my hard earned cash to pay for the registration fee for Friends For Life. This is a fine conference that's run by a Yankee charity called Children With Diabetes and it's held near London where the hordes of pancreatically challenged kids and their parents descend upon a hotel for a series of activities and seminars for the parents. Ultimately a worthwhile thing which I am desperate to go to.
Diabetes wise things have been pretty good. Bar the illness. The nature of my work means that there can't be a set pattern that will work for every shift. All I find that I can do is go into work and set a temporary basal and well, hope. Fortunately I can get most things sussed pretty rapidly. The first few hours of a shift normally sets the tone for the entire day. As for shift work, I will be starting on my long days half way through next month. These will be interesting as I will be at work for thirteen hours. The upside to this is I will be getting alot more time off work and I'll be able to sort myself out in terms of fitness and money by working a load of bank shifts. The fun. Time for me to start harassing the staff bank and fortunately if work comes up on different wards I'll take it as it'll be an interesting experince.
Until the next time!
Monday, 21 February 2011
So, when I started pumping I always had one thing that I wouldn't try, that was a steel cannula. Now thanks to a very kind person on the CWD mailing list I've now had a couple of them. This I suppose is something of a review.
These are relatively easy to put in as there's no faffing about with a Quick Serter or things like that. It's just a case of popping it in and leaving it there.
Now this is what I thought would be the problem when I did my research into the cannulas. I can't feel it at all. Even as I write this I have one in and it's no different to wearing an ordinary cannula. I like very much. The only downside is that it has an away from site disconnection thing. That's to say there are two bits that stick on instead of one. Small issue really. Then I have the equivalent of a tegaderm covering this one and the only issue with it will be when I take it off and it gives me an impromptu wax.
Also there wasn't a lump when I took out the first one. That's a first for me.
Now, in theory every cannula should be changed every three days. I managed to get four out of the first Sure T (for this is what they are called) and I'm sure I could have got more. My Silhouettes and Quicksets tend to last about four days at the most.
Overall I quite like them and I will be asking for several boxes when I make my next order with Medtronic. It'll be nice to have a change from the Teflon ones from time to time.
Saturday, 12 February 2011
Now, as you can appreciate with the D a new job means just a little bit more than standing around, keeping quiet and learning. It means trying to sort out new insulin regimes and that. For me on a pump this is somewhat easier than it would be on MDI. Well, I say easier because when I've got it right it will seem like an absolute joy because my BG's will be pretty damn good and hopefully there won't be many problems. However, before I get to that stage there remains alot of tinkering to be doing. Now that I've been at the job for a little over a month now I've got a pretty good idea of the patterns of activity in my shifts and what temporary basals work when. Now to translate all that into actually doing things, which, as you can probably guess by my writing this is that I'm shirking doing that and have yet to do it. This is the plan for the rest of today. Fingers crossed.
As a rule of thumb, I find that a seventy percent temporary basal works well throughout the majority of my shift and alot of square wave boluses help avoid post prandial hypos. Now time to do something and actually sit down and work out all that I need to for this to happen.
Tuesday, 25 January 2011
So, as the learned readers amongst you may have gathered I have been ill. Spectacularly so infact. Last Tuesday I ended up leaving work early feeling like death warmed up. I didn't even make it home. I got to the front of the hospital where I work and spewed everywhere. I called up a very good friend to ask for some advice as I'd spent most of the afternoon hypo, half way through the call I had to pause to vomit. Not my finest hour. We decided to pop to A&E to be safe.
After a short wait in A&E and running to the toilet every few minutes as I had a massive case of the shits, I saw the doctor. Turns out I had a bout of gastroenteritis. What happened in A&E was the doc gave me an injection of metoclopramide right into the glorious area that is my furry arse. I also got a prescription for more metoclopramide for use later on. What metoclopramide does is it stops you vomiting. After leaving A&E my friend got me a cab home and made sure I was ok before leaving me as I was frankly plague ridden.
That was just the start. Over the first night I didn't sleep as I spent the night running to the bog every twenty minutes and throwing up every hour or so. I was also rather feverish. I can't recall much of that night which is a blessing. The second day wasn't too bad as the squits and vomiting were still there but much reduced. It took a few days for the vomiting and the shits to stop. I couldn't eat either really, well, not until Sunday. I made the most of the large amount of bacon that I had. Note past tense.
Interestingly the BG's behaved rather well during my predicament. This is partially due to being on a pump and having all the benefits that it brings. On the other hand I didn't eat anything for a few days.
As a result I'm now about five or six kilos lighter than I used to be. Result. Well, I do need to loose weight but in any other way than that! I'm at work tomorrow and I am rather looking forward to going back to work. I hate being sick.
Saturday, 8 January 2011
What I've noticed is that sometimes the skin won't break unless I put alot of force behind the inserter needle. Now this isn't exactly desireable. It means that I have to go around my stomach testing to see if the needle will make it in without too much force. What I usually find that works is me putting a site in the same side of my belly twice as oppose to once then putting in a new one on a different side each time I change. It works well for me usually. That is until a few weeks ago. I just have to see if the other place is a bit better by trying to jam the needle in. Sometimes it works. Others I go back to the other side and hope that things will be a bit better the next time.
I suppose I'm lucky that I'm not allergic to the cannulas. That'd be a right pain in the arse if I'm honest. I'd then be obliged to use a steel cannula which is something I never want to have to do.
For that reason I've asked for a few boxes of the nine milimetre Quicksets that Medtronic do because I can use an inserter to put them in rather than pussy footing about with my hands. Maybe a different type of cannula will help me so I suppose it's worth a shot.
Wednesday, 5 January 2011
Monday, 3 January 2011
Blood on the streets,
blood on the rocks,
blood in the gutter,
every last drop,
if you want blood,
you got it!!!
Well, not quite that sort of thing but, thanks to AC/DC and today's cannula change that brought about this post.
Today was cannula change day. Not normally a problem for me as I'm now something of a dab hand at cannula changes which involve my Silhouette sets. Today's change was somewhat more exciting.
All went well when I put the thing in to begin with and nothing out of the ordinary was noticed. Not until I decided to have a shower that is. I went to un hook from my pump and to put a shower cap on to it. I saw that there was blood filling up the cannula. Not good. I looked at the tubing. There was blood filling that too. What did I do? Well, I took the cannula out. Big error but it had to be done. Blood poured out of my belly and all over my thigh. I must have hit a small blood vessel. That was a bit of a shocker to liven up my morning.
Sunday, 2 January 2011
Things seem to change alot when you pump. Basals will be fine for a few weeks at a time then suddenly need to change.
In my case this has been a gradual process since a little before Christmas Day and from then on. I'd noticed that I was flying rather high in the evenings so I made changes to sort that out. Since then I've noticed changes in the late afternoon which has had something done about it. The most frustrating one has been the past few nights and early mornings. I've been rising overnigh despite corrections to around ten or eleven millimoles per litre. That tells me I need to make changes so I have.
I do love pumping but it really does mystify me as to how changes like this come about and make my life somewhat unpleasant for a few days whilst working things out and making the necessary changes. Granted the changes are generally good for a few weeks to two or so months but then they need to change again which is quite irritating. It doesn't happen too often that I need to make changes but I'd like it if I could get them sorted and not have to change them at all. My body it seems, has other ideas on the matter.