New technology

Recently Thing 3 and I were offered the opportunity to try the new Dexcom G6 for a month and I wanted to share my honest opinion about it as a patient and as a parent. Firstly let me just say I have paid for the G6 and I am in no way being paid for this review therefore all opinions are solely my own and my daughter's.

In the past we have been put off trying the Dexcom CGMs for two reasons, cost and the insertion device. At over £100 more expensive than the Freestyle Libre (a flash glucose monitor) a month when buying for two of you it soon adds up and bleeds you dry. Also the insertion device was scary looking for Thing 3, and myself if I'm honest, using a syringe style device with self administration. With both our cannulas and the Libre using a quick fire insertion I wasn't sure if either of us could go 'backwards' and have to push the plunger ourselves.

The new G6 solved both these issues and more. The new applicator allows even Thing 3 to insert the sensor herself, using a quick fire system much like her inset cannulas for her pump. It is a very simple system with clear instructions in both picture and text formats. The number of steps to the process are minimal at 4, making for a quick set up.

If you, like us, have been wanting to try the Dexcom out then now is the best time. They have a starter set available containing 3 sensors, that work for 10 days each, and a transmitter, which lasts for 3months. All this is available for just £159! The idea of this is if you love the Dexcom you can the sign up to their year long subscription plan. You pay £159 a month and they will then send you your sensors and a new transmitter every three months, so there is no having to remember to order your supplies. Amazing right!

It really is like Christmas when that first box arrives. We immediately downloaded the Dexcom app on both of our phones, as well as the Follow app on my phone. We set up our alarms, which are amazing by the way, and followed the instructions in the app to apply those first sensors and start the 2 hour warm ups. At no point did we get confused or flustered and we love how easy it all was.

We are nearly at the end of this first sensor and have loved the freedom it has given us both. It has prevented several lows and highs, reducing the ups and downs we were both experiencing. We have allowed Thing 3 out to play for the first time since diagnosis without either Thing 1 or 2. I am also finding I'm up and down the stairs less of an evening hoping to catch spikes or falls before they get out of hand. The guilt of having stabbing my daughter in the finger whilst she sleeps has reduced, alongside the need to disturb them. Yes our future looks poorer in the sense of funds but it is totally worth it for the piece of mind that this wonderful device has given us so far.

The extra tool this wonderful piece of technology gives is the Clarity website, Dexcom's own website for looking at your results and information in greater detail. You can share this with your primary carer, and your diabetes team as well as see any patterns that there may be. If for instance thing 3 has a low blood sugar around the same time of day the website will flag this up easily for you, suggesting what adjustments may need to be done. It's like having a DSN in your pocket 24/7!!

Between the alarms, the follow app, which allows me to see what is going on no matter where she or I are, and the Clarity website we have seen big improvements in just 7 days and now look forward to those 3 monthly blood tests.

So far the only downside we can see to the system is the inserter post use. They are single use devices and appear to mostly plastic. There is no real advice on disposal of the inserter and it feels wrong in a way to be throwing them away in the household waste. So Dexcom if by some chance you are reading this some advice would be nice or better still a recycling possibility for those of us who are conscious of our plastic out put.

Who else has a Dexcom? What are your thoughts and do you agree that the inside knowledge is worth more than the financial outlay?

Until next time
M
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I'm sorry!

It's funny how easily life takes over and time runs away from you. I guess what I'm trying to say is I'm sorry. I'm sorry that I started this Pump Life blog but didn't follow up. I'm sorry I didn't check back in and provide consistent and entertaining reading. Most of all I'm sorry I let my lack of confidence in myself and the negative voices in my head stop me from coming back earlier. Don't get me wrong they are still there but I am slowly learning to tune hem out and focus on how I want to feel, and what I want to do. I want to share with the wonderful diabetic community that is out there and growing each day. I want to be the support system a newly diagnosed person, no matter their age, starts with. I also want to help educate the wider world one reader at a time, correcting the misconceptions surrounding diabetes, especially type 1 and the confusions between it and type 2.

Now that the apology is out of the way what shall I write about. What do you my lovely readers want to see, learn and hear? Should I start at the beginning? Should I focus on the mental health side, or should I stay clinical? I have lived with this disease, disorder, condition, whichever word you prefer, for a quarter of a century now. I have seen the good side, yes there is one, and the bad. I have even seen the downright ugly! My immune system which is supposed to protect me has gone back into overdrive and is now attacking my joints and muscles, it may eventually progress to other organs. For now I'm stable, I'm happy and I lead as much of a life as I can whilst pacing myself and leading what the buzzword calls slow living. Now please don't panic I'm sure your immune system won't do the same. I don't know why mine has but I am finding the positive side and deciding it's to help you, help those in need of support. Help those who need reminding they can do this, that it's ok to have days, weeks or even months of where it is just too much.

So ask away, suggest away. Help always comes to those that ask and no question is too weird, off limits of daft.

Until we chat again

M

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Diabetes and Christmas

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Avoiding temptation and following a healthy eating way of life is hard for anyone, particularly at Christmas. But add in any health issues that require further control over your diet, like allergies, eating to help with autism and, like in my case, diabetes, you are increasing the risks and need to maintain that control.

The trouble is times like Christmas means lots of treats, lots of HUGE portions, lots of alcohol and meals out. Another words, lots of opportunities to not know exactly what you are putting in your mouth. Add to that the excitement and stress effects on your blood sugars and you have more balls in the air.

I have had my pump 18 months now so this will be my second Christmas with it, but Thing 3 will be experiencing her third. Since learning to carb count and adjust my insulin according to what I'm eating I have been given more freedom and ability to enjoy the festivities. I'm still learning about all the wonderful abilities the pump has and the most effective way to use them. I love the way I have gone from several injections to cover one meal to programming my pump to give a combo bolus. A combo bolus is a partial surge of insulin followed by the remainder being dripped in over a certain period. This is great for meals like pizza or high protein meals as well as large quantities. All of these and more are slower to digest, meaning the effect on your blood sugar level is different.

All these extra abilities has allowed me to enjoy extra pressure times like this, with limited lasting effects. I can enjoy that glass or two of wine, that large serving of Christmas pudding and cream or the nibbles in the evening with a good film. What do you find hard about this time of year? What tricks have you learnt to cope?

Thank you for stopping by, reading and hopefully enjoying my post. I truly appreciate your time.

Till next time
Mrs L
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Perfect control?

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Morning all (good afternoon etc depending on when you are reading this). How is everyone today?

I thought today we would discuss perfect control, what that means, is it possible and have I managed it.

In an ideal world perfect control of ones glucose level as a type 1 is as straight a line as possible when looking at a graph of the results,  as close as you can to your target level.  In both mine and Thing 3's case our number to aim for is 5.5 mmol/l. We have found ourselves doing a little happy jig each and every time we see that little number appear. Sad I know! It helps to keep Thing 3 motivated I have found although I'll admit I am relived and happiest when I see it too.

Now don't get me wrong this is no easy task and keeping it there appears to be virtually impossible. If we work really hard and put all our focus into making minute adjustments to our insulin doses or food intake, it can be done. But that takes a LOT of calculations, food management and sugar level checking. I have done it but after a few weeks of eating, sleeping and breathing calculations I burnt out and desperately wanted to find a balance. A balance between that perfect number and enjoying life and everything it has to offer.

How did I achieve those weeks I hear? Well it took a lot of research, planning and a huge change in diet. You may or may not have heard of the low carb (almost keto) way of eating. Well I came across this movement of hundreds of type 1 diabetics limiting their carbohydrate intake and increasing their fat and protein. This way of eating for diabetics stems from the research and way of living of Dr Bernstein. His book The Diabetes Solution has become like a Bible to many a type 1 round the world, young and old. What he has achieved in his own health and life, let alone others, amazes me greatly. After being told in his twenties that he didn't have long to live due to kidney damage from high blood sugars, Dr Bernstein dramatically changed the way he ate and monitored his blood sugar levels. He is now in his eighties and doing very well indeed! He even managed to reverse most of the damage done to his body.

I tried to follow the solution as closely as I could but I admit it was my own weakness and inability to stay away from complex carbs (bread and cakes) that resulted in me not sustaining for long. Well done to those that do manage it, especially the children and whole families. I do believe the long term benefits are huge. Whilst eating this way I was consuming no more than 25-35g of carbohydrates a day, mostly from greens and berries. My average meal consisted of large portions of greens like spinach, bacon (with the fat on) and eggs. My sugar levels were very very stable and my insulin doses very small. I even managed to drop my basal (background insulin) by 10 units! I even learnt I need to bolus for protein, eliminating the little spikes several hours after meals. Did you know that protein is converted into glucose through the process of glycogenesis? Amazing I know!

It is getting easier to control our sugar levels with the use of technology and very careful monitoring. The likes of the Dexcom CGM and insulin pumps have made this a lot easier and I'm sure the future holds much more to help. However the biggest hurdles for type 1 diabetics, in my opinion, is the need for such close monitoring, massive amounts of calculations that need doing, and the feeling of being different being emphasised more by the huge difference in their diet. Manipulating the numbers can become all consuming and addictive, causing you to be ecstatic if all goes right but on the other hand if things go wrong or numbers don't add up it can be very depressing. Depending on your own mental health and personality to whether the perfect flat line is 'worth' it. 

So to finish it here with one final thought, perfect control is achievable, but only if you have the drive, understanding of how to manipulate numbers, and determination to succeed no matter what.

What are your thoughts? Have you achieved perfect control?

Mrs L

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All opinions in this blog are those of the author only and are not meant as medical advice or instruction. Please do your own research and seek advice and support before making any changes.

How Bad Am I?

There I was at the beginning of the year, planning on posting regularly and hopefully keeping readers interested, whilst opening their eyes to life with an insulin pump. How well did I do....NOT! There are no real excuses either. Yes my health hasn't been all that great but apart from the usual real life reasons I honestly don't know what happened. I have never been a journal writer so maybe that lack of discipline has meant I don't make time to sit down and write.  Who knows!

Any way here I am. For how long I don't know so I won't make promises. Yes in an ideal world I would love to post weekly but until I can get myself into that routine I won't commit to it.

Getting down to business, I have to say I love my pump. My HbA1C (3 monthly check on how my control has been) is now down to within the acceptable range. Admittedly it is the top end of the range but it's getting there. Within a year I have more than halved the measurement, and as a result I have halted and sometimes reversed some of the damage I was causing myself. My opthamologist is happy as I have almost repaired the back of my eyes (I had begun to develop bleeds in the retina, causing maculopathy meaning I was losing my central vision), although it appears I do have the beginnings of cataracts at 34! He is hoping with my better sugar control though the growth rate will be very slow. My nerves in my hands and feet are manageable pain wise now, although it looks like I may not regain full feeling back. I am just extra careful now to check my feet regularly and to massage them to aid circulation. Not feeling the cold is the worst part so I have taken to knitting myself socks to help. 

My weight is still an issue, with the demon being particularly loud some days. I am more open and honest with Mr Lyvit now when the voice gets too loud and find this admittance to him helps me reason with myself and ignore the impulses.  I am losing weight but at a much healthier pace, which should mean it stays off this time. Sadly it is hard at times though as I cannot exercise much, if at all, due to other health issues that have arisen in the past 6 years. It doesn't look like they are due to my poor control but they do go hand in hand with the diabetes. This is because they appear to be immune system related in that it has gone into overdrive again! I have been diagnosed with UCTD or undifferentiated connective tissue disorder, as well as fibromyalgia. The UCTD could eventually develop into something like Lupus and/or Rheumatoid arthritis but for now it appears to be managed. I wake each morning with trepidation of how I'm going to feel. I'm stiff in all my joints, particularly my hips and legs. Most days I need to go through a series of stretches whilst still lying down, just to allow me to get out of the bed. My muscles ache as if I have over used them and I find it hard to stay warm. I have a constant presence of pain, the level just varies, often hour to hour. I have to plan everything around how in feeling as even just running the hoover round can wipe me out for days. If I have an event coming up that is non-negotiable I rest for several days before and after, often sleeping more and confining myself to the sofa with the TV for company.

It's not all bad though haven't to take life at a much slower pace. I have learnt to appreciate the little things, like the times the children want to sit with me and be creative, or I see a lot more of nature when I'm able to go for a short walk. I literally can stop and smell the flowers, usually out of necessity. I am in the very fortunate position that I don't need to work. Don't get me wrong we are by no means well off, in fact we have to budget for things weeks, sometimes months in advance. But we are in the position that if I worked it would need to be full time, just for us to break even. This would obviously then massively impact my strength and well being, as well as the children and Mr Lyvit. This is why for now we have decided I'm better off staying at home, in the position most people dream of. It gets boring at times but I have found myself enjoying many forms of entertainment. These include the usual box sets on TV,  along with reading and housework. I know housework as entertainment! But it's amazing how just sorting out a pile of clutter can be therapy. Along with reading physical books I have found myself enjoying audio books, blogs and podcasts. I have also rediscovered my passion for arts and crafts, especially those that are yarn based. I am self taught (with the help of video tutorials), and I now knit, crochet, sew a little bit and cross stitch occasionally. I am a selfish crafter at the moment, as I only make what interests me but the more skills I gain the more I'm considering expanding and maybe selling some. Is there room for another craft seller?  What do you think?

I have waffled on and repeated myself from earlier posts it seems. That's what I get for leaving it so long between posts I guess!  So I'm will leave it there for now. Thank you if you have made it through this post and I hope you enjoyed it. Please do comment below and tell me what your thoughts are. Is there anything you would like to know, or see in a future post. 

For now take care and hope to speak soon

Mrs L
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Amazement

It's amazing how you can make all these plans to be more organised, to partake in an activity more regularly, to share and be more open online and off, yet life either gets in the way or the routine never surfaces.   I say this because I promised myself I would blog more. I wanted to  start this blog more as a release for me, somewhere to vent, to blow my own trumpet or even just keep a record of persistent thoughts. Pretty much like a written diary or journal. However due to many reasons I'm sure, but of none I'm conciously aware, I have failed at the first hurdle.

My biggest obstacle has to have been my self esteem and the nagging little devil voice on my shoulder saying "no one wants to read what you have to say!"  But I don't know if I'm bothered too much by that now. I have grown a lot in the past few months. My mental health has improved and I'm learning to accept who I am, what my limitations are and who I should be concerned about.  This has come about through necessity really. Necessity to reduce stress, conserve energy and adapt to changes in my life.

This need arose as a result of accepting my health is no where near what it used to be, and miles from what an early 30's woman should be!  Five years ago I deteriorated dramatically, suffering increasingly from tight stiff muscles and joints, fatigue, insomnia and increasing pain levels. No matter how much I slept, ate well or paced myself during the day my ability to even keep up with my then 3 year old when walking, became increasingly difficult. I went to visit my GP after putting up with these, as well as many other symptoms, for weeks thinking it was just a 'virus' (otherwise known as GP speak for 'We don't know!').  Thankfully the GP took me seriously and instantly sent me for blood work to be done whilst also referring me to see a rheumatologist at the local hospital. Long story short after a process taking almost a year, several different tests and examinations, I walked out of the clinic with a diagnosis of Undifferentiated Connective Tissue Disorder (UCTD for short), a new prescription for several different medications to hopefully help and a "sorry not much more we can do. It's not curable!"  Basically my immune system yet again has decided my body is some rogue virus or bacteria that needs fighting and destroying. Growing up with Type 1 Diabetes I was always told I had a weak immune system, but with this new diagnosis surely it's too strong and active?  At least a part of me is!

Over time I have learnt what I can and cannot do. More than 1 load of washing a day means early to bed. If I have an outside engagement coming up, where I need to be alert and functioning, then for at least a day before I need to do very little. Walking has become a torture device and anything more than a mile a day (in total) means full pain medication and the need to hide and cry an hour later.  Simple tasks take me twice if not three times as long and my three gorgeous children have now had to pick up the slack at home and do the basic cleaning tasks. I have even been known to ask my middle child (eldest daughter) to help me shower and wash my hair!  Not what I envisaged their childhood to be I can assure you.

The need for all this help doesn't do much for your mental well being. The only way I have found to cope is by finding the positive in every situation. I have reduced the guilt of not being an active, 'normal' mum, doing everything with and for my angels, by reassuring myself that they have a healthy empathy towards others, especially those in unusual circumstances. Also they will leave as adults knowing how to survive, look after themselves, cook, clean etc. How many times have you heard of young adults struggling at university due to the sudden need to run a house, budget and survive!

Another positive to being sofa or bed bound has been the love of all things yarn related I have found. I adore creating new things for those I love, seeing their faces when I give them that cuddly toy for their new baby, or a blanket to mark a special day like a wedding. Between looking for inspiration, choosing the materials and curling up to start my creation, I get excited and look forward to each and every stitch.  As a left hander the likes of YouTube and various blogs have been a god send when it has come to learning new things. My best craft to date has to be crochet, done using a yarn or thread and a single hooked needle.  In essence crochet is the art of knotting the yarn one loop at a time to create whatever your heart desires. From dishcloths and shower scrubbies to king size blankets (afghans) and cuddly toys known as amigurami.

Yes having a chronic condition, and more recently being diagnosed with another in the form of secondary fibromyalgia, has changed my life in many ways. But they have allowed me to appreciate the small things; the flowers that I may have missed if I had been walking hastily,  trying to fit more into my day, the change of the weather, with the sun breaking through the clouds, the sounds of nature as it continues on despite human interruption. Even the little things my family does each day have become more noticeable as I watch on from the side.

I guess the message I want to leave you all with is that no matter how bad things may appear, focus on the positives no matter how small and you will be surprised at what else you may notice. Oh and of course the positives are much better for you mental health too!

Time To Be Honest

Ok so I guess it's time for a bit of honest talking. To myself as well as you all. It's not going to be pretty but I hope that some comfort and strength can be taken from it.

Two years ago next month I had a huge wake up call given to me.  I'm so grateful for it despite how horrid it has and will be for my youngest.  You see Valentine's Day 2015 Thing 3 was diagnosed with Type 1 diabetes.  Whilst lying awake anxiously awaiting results for her in hospital I 'awoke' to what I was doing to myself and why. 

For years I had been omitting my daytime injections to help me to lose weight and maintain, what I thought and had been led to believe, was the perfect body image.  I knew of the risks but to me at the time image was more important than my health. So so stupid.

Research since my awakening has led me to believe that I have a form of diabulimia, an eating disorder distinguished by the omitting of insulin and controlling of food intake to help lose weight. This condition is still not widely known about but it can do so much damage if not recognised early.  I learnt very quickly how to take just enough insulin to avoid the hospital and all the questions and accusing looks.  I realise now that they weren't accusing but rather empathy and offers of help and concern. 

Each time I got pregnant I would be seen weekly by the dual team.  This was perfect for helping me to take care of myself AND my baby.  I would eat properly and take all of my injections, despite the huge amounts needed by the end.  The issue began after the 8 week check up post natal.  I would be handed back to he community team which usually meant the GP and nurse.  Due to the high volume of patients they have to see it was very easy to get lost in the system, intentionally on my part or not.  The beast would rear it's head once again and I would go back to my old ways.  Looking back now I realise how incredibly stupid that was but at the time it was very hard to control or even stop.

Comments from friends and family on how quickly I had lost the weight, how well I was looking and how amazing it was that I had achieved the dream of losing the baby weight so quickly only spurred me on.  There was always the thoughts of just a few more pounds, just until my tummy was flat, or just until my legs resemble legs and not tree trunks.  Thoughts that weren't voiced, for if they were I'm sure someone would have disagreed and tried to stop me.  Not that they would have managed.  My stubbornness and need to rebel against authority aided the diabulimia, keeping the beast talking in my ear.

I was diagnosed aged 9 and hit puberty soon after.  This brought with it all the usual angst of perfect image. By 12 I had mastered the balancing act with my insulin.  This continued all through my teens and my twenties, only stopping with each pregnancy.  I was 31 when Thing 3 was diagnosed, making it the best part of 20 years before I 'woke' up! I still struggle keeping the beast quiet now, especially seeing I do need to lose a few pounds now to help with the horrid conditions triggered by my naivety and stupidity.  Speaking up and telling not only my team but my close friends and family, particularly my husband, has been the biggest help.  Online forums and groups provide the sympathetic support needed when times get tough.  But the biggest help for me personally has been Thing 3.  Showing her what she needs to do as well as how to behave long term means I don't want to pass any of these horrid habits on to her. 

She is my saviour, hero and life line. I don't know where I would be without her.

Sorry for the emotional sappy bits.  This is me and I'm proud of who I am now, no matter what size I am or what I look like. I'm a mum, wife and friend first and foremost.