I know I've not not been here for a while so as always many apologies but as I seem to say that each time please accept this as my permanent apology for slack updating. It will save a paragraph from all my future rambles. Yay!
I've been thinking for a while what can I write about and then in the words of Bart Simpson from the '80s "inspiration hit me! (02:11)" No, I won't be having a party, it's all about what winds me up most about having diabetes following me around.
There's plenty that could depress about the D monster. Having to stab myself to varying depths every day is a pretty big drag. I like my skin without holes but the continual need to either put some liquid in, draw some blood out or leave a thin piece of plastic or metal in at all times of day can be totally draining. But mostly it's just boring. Yes the finger pricks hurt but in the bigger scheme of things using the sharp stuff doesn't worry me too much. And if I changed my stabby thing's stabber more than 8 times a year it would probably hurt even less. For those of you that don't believe it you CAN change the blade in the finger pricker more than a few times a year. And if you speak to your local HCP they may even recommend you do it every time! Madness I know but I've been told it's true!!!!!
Next on the list of pains is flattening the curve of BG readings to as steady a level as possible. This involves performing a continual juggling act to balance the insulin I'm shovelling in against food with too many variables to mention. I'll try to mention them though: exercise, time of day, temperature, carbs in the food, type of carbs, fibre in the food, alcohol, infections, stress, weekend or work day, colour of my socks and whether it's raining. OK I may have made the last two up but you get where I'm coming from. It can be a challenge. And what's the consequences of failing to achieve the perfect balance. In the short term it's either being high or low which are normally fixed by fruit pastilles or more insulin. Again this is all inconvenient but in that circle of life we're all part of, there's worse. Did I just say that? In the longer term the worries are slightly bigger with loss of limbs and eyes being a constant background worry. As I wrote about last year, it can get very stressful but again I just need to handle that and try and minimise the risks. I think I'm reassuring myself with the CGM and the low glucose warnings are also a very useful nudge when things are going a little out of control.
So what is it that really gets my back up and makes the living with diabetes such a pain? The observant amongst you might already be putting your hands in the air and wanting me to ask you like at school. But just in case you hadn't bothered to look at the title the answer is (drumrollllllllllll)....... Time!
Really? That's my biggest annoyance with the day to day living of a 24/7 condition? When things are going relatively well, yes. It takes time to do anything, everything and it's just so frustrating.
Examples below:
Appointments - About four clinic / hospital appointments a year means taking time out each time to firstly go for the blood test that will drive the tone of the appointment and then a separate trip for the appointment itself. As I live 6 miles (I realise it's not that far really) away from the hospital it means each trip involves queuing through the traffic and then spending 20 minutes looking for a parking spot because I refuse to pay £2.50 to park - that's your fault parents! It all takes forever; sitting watching life disappear until I manage to get the golden fifteen minutes that are very useful when I actually speak to the HCP. Half a day is easily lost each time. Add to this the eye tests that involve dilated blurryness and we're up to 2 and a half days a year mostly sat around for a combined couple of hours of expert opinion.
Prescriptions - That's another trip to the doctors at a frequent interval. Here I'll admit I am lucky though. My local GP has online prescription renewal along with decent sized quantities meaning the ordering is only monthly but very quick. Collection again is fairly easy as the linked pharmacy is open 7-11 six days a week and 9-5 on a Sunday.
Blood testing - Testing up to lots of times a day is a total faff. Grab the machine, extract the strips from the container, put the strip in the machine, take the strip out again and put it in the right way up, prick the finger, try and prick again when the blood fails to appear, admit defeat and use the gushing fountain that is the little finger, wait 5 seconds, smile or cry then correct with insulin, eat or carry on. You’ll notice I saved 20 seconds there by not replacing the stabby thing ;) Now, don’t get me wrong this is a world away from the 2 minute wait of doom that the old BM sticks gave but it’s something else to add to the list of things to do. (As a side note the big blue Reflolux is still for available to buy!!!! - Although looking closer the Reflolux S was the second generation white model not the blue one pictured here #geek).
Carb counting - Grabbing something to eat in a hurry isn’t the high speed efficiency I wish it was. First up comes the blood test as above and then the magical art of counting carbohydrates in the item of unknown weight when the 'helpful' nutritional info shows carbs per 100g. Thankfully Fred the Pump does the hard work of working out the insulin amount to give but there's usually a bit of thinking involved based on the type of carbs going into my body. Pasta takes forever, rice even longer and pizza is a dark art only solved when eaten at the same time as consuming lots of beer - you may mock this last note but it worked last week so I'm sticking to it!
Buying stuff - Wait, I hear you say, everyone has to buy stuff. Yes, that's right. But have you ever tried to fill out an insurance price comparison website when diabetes is involved? Health, travel and car. They are all as equally frustrating although thankfully car insurance seems to be getting easier nowadays.
Supplies - As I said before standard prescription stuff direct from the GP. Pump stuff though comes directly from Medtronic in two ways. With sets and reservoirs I phone my health authority who then order it with delivery date unknown. With CGM I phone the nice people at Medtronic and they kindly relieve me of a wedge of cash and then send it out giving me an approximate delivery date. Thankfully I work from home three days a week so it's not often I have to make a special effort but again the call, signing and then reorganising of the shelf takes even more time.
Correcting lows and waiting to come back up - This ranks as one of the biggest pains in the bum. So I've felt low and confirmed with another blood test and eaten some fruit pastilles; I then need to wait around while my BG decides to take it's time to return to a level where I start to feel normal again. It's only ten minutes or so but while life is happening around me that's time that's annoying to lose. In reality sitting and waiting for it to come back up isn't what normally happens. The usual scenario is that I carry on doing what I need to do hoping that I can blag it through the next ten minutes without my weakened performance being noticed. I'll admit here to not knowing if anyone really notices the difference!
Changing sets and sensors - Another 5 minutes faffing around just to ensure life continues as normal. If scheduled this isn't too bad and I'll usually leave it until a quiet moment. The real killers are the unexpected disconnections thanks to door handles or buggies! These are reeeeeeeeally annoying as it's guaranteed to happen when I'm rushing around; hence not watching the tube closely enough. These need a full stop to find the set-change stuff and do it while hopefully not under any extra time pressures.
Forgetting stuff - I'll admit to blaming diabetes for this one but I'd probably just forget something anyway. However must trips out with the family involve me getting to the car, or half a mile down the road, and then returning to the house to pick up the spare sets, fruit pastilles and testing kit that I left by the front door so I won't forget them.
The Diabetes Online Community aka DOC - What? I hear you say. How can we be blamed for wasting your time? Well you aren't. Really. Well a little bit. But it's sort of in a good way. Without the support of my close family and you, my online family, living with diabetes would be much, much harder. I love interacting around the world and having conversations with people I've never seen. Being able to share, give and receive advice and support is priceless and, I've said this before, as valuable as my infrequent contact with healthcare professionals. However, this does take time and I'm not pretending I'd be more productive in the other time but maybe instead of writing this blog I could be finding a new renewable energy source to save the world. No? Oh OK, I'll leave this one here because I'm not complaining it's just another example of something that takes time.
All the events on their own they are just steps in time but they add up to a constant background waste of time and it's the thing that just gets me a bit down in the D world.
Thankfully I have a wonderful wife, kids, parents, sisters, brothers, in-laws etc to put everything in perspective and realise that all in all my life's not that bad. All in diabetes has it's ups and downs but without I wouldn't have you here so it's not too bad. In fact, it could be far worse and following the wise words of Mr B Simpson earlier we'll finish with even more wisdom from Mr E Idle....
Until the next time enjoy your time!!
I've been thinking for a while what can I write about and then in the words of Bart Simpson from the '80s "inspiration hit me! (02:11)" No, I won't be having a party, it's all about what winds me up most about having diabetes following me around.
There's plenty that could depress about the D monster. Having to stab myself to varying depths every day is a pretty big drag. I like my skin without holes but the continual need to either put some liquid in, draw some blood out or leave a thin piece of plastic or metal in at all times of day can be totally draining. But mostly it's just boring. Yes the finger pricks hurt but in the bigger scheme of things using the sharp stuff doesn't worry me too much. And if I changed my stabby thing's stabber more than 8 times a year it would probably hurt even less. For those of you that don't believe it you CAN change the blade in the finger pricker more than a few times a year. And if you speak to your local HCP they may even recommend you do it every time! Madness I know but I've been told it's true!!!!!
Next on the list of pains is flattening the curve of BG readings to as steady a level as possible. This involves performing a continual juggling act to balance the insulin I'm shovelling in against food with too many variables to mention. I'll try to mention them though: exercise, time of day, temperature, carbs in the food, type of carbs, fibre in the food, alcohol, infections, stress, weekend or work day, colour of my socks and whether it's raining. OK I may have made the last two up but you get where I'm coming from. It can be a challenge. And what's the consequences of failing to achieve the perfect balance. In the short term it's either being high or low which are normally fixed by fruit pastilles or more insulin. Again this is all inconvenient but in that circle of life we're all part of, there's worse. Did I just say that? In the longer term the worries are slightly bigger with loss of limbs and eyes being a constant background worry. As I wrote about last year, it can get very stressful but again I just need to handle that and try and minimise the risks. I think I'm reassuring myself with the CGM and the low glucose warnings are also a very useful nudge when things are going a little out of control.
So what is it that really gets my back up and makes the living with diabetes such a pain? The observant amongst you might already be putting your hands in the air and wanting me to ask you like at school. But just in case you hadn't bothered to look at the title the answer is (drumrollllllllllll)....... Time!
Really? That's my biggest annoyance with the day to day living of a 24/7 condition? When things are going relatively well, yes. It takes time to do anything, everything and it's just so frustrating.
Examples below:
Appointments - About four clinic / hospital appointments a year means taking time out each time to firstly go for the blood test that will drive the tone of the appointment and then a separate trip for the appointment itself. As I live 6 miles (I realise it's not that far really) away from the hospital it means each trip involves queuing through the traffic and then spending 20 minutes looking for a parking spot because I refuse to pay £2.50 to park - that's your fault parents! It all takes forever; sitting watching life disappear until I manage to get the golden fifteen minutes that are very useful when I actually speak to the HCP. Half a day is easily lost each time. Add to this the eye tests that involve dilated blurryness and we're up to 2 and a half days a year mostly sat around for a combined couple of hours of expert opinion.
Prescriptions - That's another trip to the doctors at a frequent interval. Here I'll admit I am lucky though. My local GP has online prescription renewal along with decent sized quantities meaning the ordering is only monthly but very quick. Collection again is fairly easy as the linked pharmacy is open 7-11 six days a week and 9-5 on a Sunday.
Blood testing - Testing up to lots of times a day is a total faff. Grab the machine, extract the strips from the container, put the strip in the machine, take the strip out again and put it in the right way up, prick the finger, try and prick again when the blood fails to appear, admit defeat and use the gushing fountain that is the little finger, wait 5 seconds, smile or cry then correct with insulin, eat or carry on. You’ll notice I saved 20 seconds there by not replacing the stabby thing ;) Now, don’t get me wrong this is a world away from the 2 minute wait of doom that the old BM sticks gave but it’s something else to add to the list of things to do. (As a side note the big blue Reflolux is still for available to buy!!!! - Although looking closer the Reflolux S was the second generation white model not the blue one pictured here #geek).
Carb counting - Grabbing something to eat in a hurry isn’t the high speed efficiency I wish it was. First up comes the blood test as above and then the magical art of counting carbohydrates in the item of unknown weight when the 'helpful' nutritional info shows carbs per 100g. Thankfully Fred the Pump does the hard work of working out the insulin amount to give but there's usually a bit of thinking involved based on the type of carbs going into my body. Pasta takes forever, rice even longer and pizza is a dark art only solved when eaten at the same time as consuming lots of beer - you may mock this last note but it worked last week so I'm sticking to it!
Buying stuff - Wait, I hear you say, everyone has to buy stuff. Yes, that's right. But have you ever tried to fill out an insurance price comparison website when diabetes is involved? Health, travel and car. They are all as equally frustrating although thankfully car insurance seems to be getting easier nowadays.
Supplies - As I said before standard prescription stuff direct from the GP. Pump stuff though comes directly from Medtronic in two ways. With sets and reservoirs I phone my health authority who then order it with delivery date unknown. With CGM I phone the nice people at Medtronic and they kindly relieve me of a wedge of cash and then send it out giving me an approximate delivery date. Thankfully I work from home three days a week so it's not often I have to make a special effort but again the call, signing and then reorganising of the shelf takes even more time.
Correcting lows and waiting to come back up - This ranks as one of the biggest pains in the bum. So I've felt low and confirmed with another blood test and eaten some fruit pastilles; I then need to wait around while my BG decides to take it's time to return to a level where I start to feel normal again. It's only ten minutes or so but while life is happening around me that's time that's annoying to lose. In reality sitting and waiting for it to come back up isn't what normally happens. The usual scenario is that I carry on doing what I need to do hoping that I can blag it through the next ten minutes without my weakened performance being noticed. I'll admit here to not knowing if anyone really notices the difference!
Changing sets and sensors - Another 5 minutes faffing around just to ensure life continues as normal. If scheduled this isn't too bad and I'll usually leave it until a quiet moment. The real killers are the unexpected disconnections thanks to door handles or buggies! These are reeeeeeeeally annoying as it's guaranteed to happen when I'm rushing around; hence not watching the tube closely enough. These need a full stop to find the set-change stuff and do it while hopefully not under any extra time pressures.
Forgetting stuff - I'll admit to blaming diabetes for this one but I'd probably just forget something anyway. However must trips out with the family involve me getting to the car, or half a mile down the road, and then returning to the house to pick up the spare sets, fruit pastilles and testing kit that I left by the front door so I won't forget them.
The Diabetes Online Community aka DOC - What? I hear you say. How can we be blamed for wasting your time? Well you aren't. Really. Well a little bit. But it's sort of in a good way. Without the support of my close family and you, my online family, living with diabetes would be much, much harder. I love interacting around the world and having conversations with people I've never seen. Being able to share, give and receive advice and support is priceless and, I've said this before, as valuable as my infrequent contact with healthcare professionals. However, this does take time and I'm not pretending I'd be more productive in the other time but maybe instead of writing this blog I could be finding a new renewable energy source to save the world. No? Oh OK, I'll leave this one here because I'm not complaining it's just another example of something that takes time.
All the events on their own they are just steps in time but they add up to a constant background waste of time and it's the thing that just gets me a bit down in the D world.
Thankfully I have a wonderful wife, kids, parents, sisters, brothers, in-laws etc to put everything in perspective and realise that all in all my life's not that bad. All in diabetes has it's ups and downs but without I wouldn't have you here so it's not too bad. In fact, it could be far worse and following the wise words of Mr B Simpson earlier we'll finish with even more wisdom from Mr E Idle....
Until the next time enjoy your time!!
Oh you are so right Dave. You have banged the nail (needle?!) firmly on the head. Feels like whining when I moan about everything I have to do to get through a day, never mind for advance planning to help life run more smoothly or so I don't muck up at work, or to go out for a meal, or have visitors, or, so help me, go on holiday. ....... 99% of the time non D's don't have a clue unless they are partners actively supporting someone with D.
ReplyDeleteWhen I was diagnosed 5 yrs ago the DSN said to me (on reflection I think almost proudly) that these days T1 Diabetes fits around the person, not the person fitting their life around D. Yeah right. I think she was proud because, yes, major major advances have been made and I do not live the life of a 1960s, 1970s or 1980s T1. But for me, there ain't no forgetting about the monster. Every minute of everyday it takes time .... And, as your list shows, that's a whole lot of minutes and a whole chunk of of 'life-time'.
Thanks again for your insights Dave.
BTW I use a Oneyouch stabby thing. Do you? I find it definitely less fiesty than the other critters I've tried. Come to Lancsipumps 9th September for your freebee ... The reps coming!