Monday, 1 September 2014

The InPuT team goes airborne!

It's no small secret that my favourite charity in this country is InPuT.  Led by patients, for patients, they are exclusively the UK's only charity increasing access to medical technology.  The team, made up of just two paid members of staff, Lesley Jordan and Melissa Holloway, aim to increase people's awareness of their rights to medical technology, and to advise them and guide them through how to obtain it, often giving them the key language and legislative knowledge which will allow people to speak to healthcare providers in a way they understand and will respond to. They also provide a key and impactive presence in parliamentary groups on diabetes and medical technology.

In 2012 I helped out at the series of roadshows the team put together, and saw first hand the powerful work they do, when a hope-lacking and frightened lady with type 1 explained that she no longer drove her car because she was so afraid of hypoglycaemia (low blood sugars).  A little InPuT advice and a letter to her team later, and she was placed on pump. Her heartfelt thank you letter said it all: that the UK needs InPuT to continue the work they do.

I've also seen how they work to keep their costs down and put the funds exactly where they should go.  Volunteers are encouraged to car share or take pubic transport to any events, and if Lesley can find a better deal for something the charity needs, she will find it.  In a world where charities come under fire for gratuitous expenses and disproportionate 'necessities', it is inspiring to see how dedicated InPuT are to what actually matters.  It is refreshing to see, and a privilege be part of.

This year InPuT need to raise funds in order to keep their dedicated service reaching as many as they do, so both Melissa and Lesley decided that there was only one thing for it: show their dedication to the work they do by jumping out of a plane!

Like this only muuuuuuuch higher up...
This coming Friday, 5th September, the InPut team (minus me, because I'm an enormous pansy-shaped flower) will be sky-diving their way to the ground in order to raise the vital funds they need, and they need YOUR help!

Check out their fund-raising pages here and here, and donate even £5 to help people access medical technology. 

Tell me, how much does your insulin pump or continuous glucose monitor mean to you?  Now imagine if your donation of just £5 could help someone else struggling to get one?

I've donated, can you help out too?

Thursday, 28 August 2014

Adventure D launch: come and be part of it

When I fist posted about the start of Adventure D, a project my brother, Chris, and I had started, we were taking a gamble as to whether or not people would agree with us that people with diabetes should have more opportunities to get shoulder-to-shoulder and try adventure sports.  As it happens, we didn't need to worry so much.

Our first weekend, a Learn to Kayak weekend, being held at CYE Sailing Centre in Chichester Harbour, is filling up beautifully...but there s still space!

To explain a little more about the weekend, it is a learn to kayak weekend on 12th - 14th September, which will take you from basic to advanced skills, with freestyle games sessions included using the techniques you've developed.  All equipment and tuition is covered in the cost of the weekend so you would just need to bring yourselves and some basic personal must-haves which we can tell you more about.

The weekend will include a talk on exercise and blood sugar levels from Lead Diabetes Specialist Nurse Claire Pesterfield, who has type 1 herself, and who has climbed Mount Kilimanjaro!  She will give advice and information on the effects kayaking is likely to have on blood sugar levels, to give you an idea of what changes you may want to consider making to your insulin dosing.  This will be put into practice on the Saturday and Sunday across three sessions.
 
Food is all covered in the cost and will also include any hypo treatments you may need over the weekend, as well as there being 'hypo stations' in case sugars drop throughout the day.  The food will also be carb-counted to make everything just that touch easier. In the evening there will be some free time to explore local pubs or chill out in the 'snug' which is a mini cinema style room on the ship.
 
The accommodation is amazing and probably unlike anything you may have seen before.  You can see photos here, at the bottom of the page. The TS Resolute is a multi-purpose floating accommodation vessel with two decks; the lower deck containing the accommodation and snug (cinema) and the upper deck housing the conference room with 180 degree views out over the harbour.  Rooms are new, clean and bright, and all have en-suite facilities.  The cabins have ample room for two people to a cabin (which will be single sex unless you know each other and choose to stay in a room together) allowing you to get to know other people with T1 from the moment you arrive. 
 
The cost of the weekend including all the above is £150 pp which, as mentioned, covers tuition, accommodation, food and the informative talks.

There is still space so if you feel like joining the group for a fantastic weekend, just get in touch at info@adventure-d.org.uk

See you there!

Friday, 22 August 2014

Sweaty palms and monster spikes: what stress does to diabetes

I did my best to pretend to the surgeon operating on my wrist that I was fine, even taking the opportunity to look at the exposed tendons in my cut-open hand moving around as I wigged my fingers, but my dry mouth and twitching foot gave me away as a fraud; the surgery was stressing me out.

'The Club'
If you were to ask me what the most impactive factor is on blood glucose (BGs) I would tell you  carbs, illness and stress, in that order.  And yet very rarely do I have my eyes open to it when a stressful day at work leaves me snapping at the heels of 20 mmol.  Or when my BGs go ape-shit when I travel.  I usually blame it on the food.  And likewise, when I tell myself that the week off work I just had was nothing to do with why my levels are better than that of a non-diabetic.  It must be a stroke of luck.

Two days ago as the Queen Alexandra hospital kitted me out with 'the club', my BGs stayed between a beautiful 5.4 mmol and respectable 8 mmol all morning.  Even during and immediate after surgery they were dancing gently around 6 mmol.  But an hour later, as I tried to figure out how a simple mocha could have me flying vertically upwards that I remembered the sweaty palms that gave me away in surgery, and realised that no coffee in the world could do this:



If ever I needed a reminder of the impact stress can have, my trusty CGM was happy to oblige!

Thursday, 26 June 2014

Animas Sports Weekend 2014...

I've been talking about what an incredible experience the Animas Sports weekend is for two years in a row now, and you can find my rave reviews here, and here.  This year, I wanted to shake things up a little.

This weekend is one of the most looked-forward-to events in the diabetes calendar, and I'm running out of ways to say how great it is.

This year the talks were incredible, the people were inspirational and the weekend as ever, was one you don't want to miss.

Thank you to all the incredible people who let me have access to their photos, including all the twitter folks, Animas and Rachel, for letting me show you what the weekend is like through everyone else's eyes.

So check it out, here.


And for Triathlete Terrence Teixeira's top 3 tips from the weekend for understanding diabetes and sports, check out his video here.


Tuesday, 17 June 2014

An ode to the Olympics

Two years ago when I started to have regular fun and games (see also: swearing and rage) with kinked cannulas, I made the decision to try out the Medtronic steel cannulas.  Rather than being most people's nightmare because of the idea that you might feel them under the skin (you can't), it took just a couple of weeks of before I made the switch on a permanent basis.

I loved the fact that as they are removed after just two days and were so much more narrow than the Teflon needles, there was always much less scar tissue left after it was removed.  And the purple marks people talked about seeing after removing the Teflon needles seemed like a thing of the distant past, to me.

Perhaps the issue is just that in order to use my steels I have been using my abdomen for every cannula, but I feel like I'm starting to resemble the Olympic rings.  Right?



With an inkling over the last few weeks that burnout may be approaching (**rips off own pump and goes to hide in garden shed for a day with a pint of ice cream**), I've put in a sharpish order for some inset IIs (Teflon needles that could park themselves on my back or arm).  

Why?  Because as PWDs who have choice (even if that choice is limited) over the tools we use to manage our diabetes, and it is my prerogative (and sometimes a survival technique) to shake things up and change my form of attack.

For a long time I didn't mind using my abdomen for cannulas.  It worked for me and the lack of kinky (oo-er) issues kept me kicking the crap out of diabetes without a second thought.  But it's OK to reach an impasse and say, "This isn't working out, anymore" and make changes that will help you feel ready to take on another day with diabetes. Diabetes paraphernalia is something unavoidable that we have to live with as PWDs, so we might as well make that paraphernalia work for us.

Have you changed your paraphernalia to make it work for you?

Monday, 16 June 2014

CGM Sensor Crunkiness

I'm glad that Jamie understands the value of CGM in my life.  Since adding it to my diabetes arsenal 18 months ago it has whipped away an incredible amount of the worry and frustration I had been feeling with increasing frequency in recent years (See also: Buuuuuuuurrrrrrn.  Oooooout).   It is my safety net; my road map. But because CGM funded full time (using on-label guidance) can cost the equivalent of a monthly payment which would buy you anything between a second-hand VW and a brand new Beamer, I had to find a way to make full time CGM use work for me, without bankrupting us.  

Thanks to a well-timed promotion and a determination to lower my HbA1c in the approach to parenthood (yup, we're heading thataway) I was able to commit to two sensors a month.  But only if I used them for two weeks at least, per sensor. I've been recording how long my sensors last and two weeks is an easy achievement in terms of time, but there is a drawback; the crunkiness.  

Only days after a fresh sensor goes in - the adhesive tape almost shimmering in photographs because it is so very white, and so very crisp - comes the crunkiness.  It is the point between 'crusty' and 'manky', when the tape has started to come away and re-sticking it with my sensor lengthening lifeline, Skintac, means the tape has turned hard and attracts fluff where no fluff should be able to get.  The surface of the once silky tape is now somewhere between sticky and solid, and it is pretty nasty.

This is the stage when I look in the mirror and thank my stars that Jamie understands the value of this crusty, crunky abomination, currently camped out like an unwashed squatter on my upper thigh.  If CGMs could suffer leprocy, mine has it.


Wednesday, 4 June 2014

Medtronic e-shop!

There are so many 'must dos' on the daily diabetes checklist that even the smallest of moves towards customer convenience is a big deal, in my book.  One of the greatest steps forward in my own management was when my GP Surgery started allowing online ordering of repeat prescriptions and appointments; no more queuing at the clinic for repeat prescription printouts.  And it would seem that Medtronic feel the same way.


Last week they invited a few blogger-type folks to their office in glamorous Watford, to tell us about the roll out their new e-shop for pump supplies and products, as well as introduce us to some new faces on the accessories front.  Now a word of caution first, don't leave this one to the last minute, because when you register it will take around 3 working days for everyone's people to speak to everyone else's people so that you can order. But once you are set up, your usual orders will be ready to simply select and go!

Any products and supplies already agreed by your team (ie the gadgets you usually order) will appear with the cost 'greyed out' on the screen, and these can simply be selected and placed in your basket ready to order.  Any new items you want to select will of course need to be run through your team first, although you can pay for items yourself, if you choose.

If there is every a problem with your order, Medtronic's (highly recommended) customer service team will call you immediately to advise you about any delays or issues in fulfilling your order.

Now, as someone whose diabetes team (lovely as they are) still employ a stone-age system of ordering via one specific nominated-for-the-job person in my diabetes clinic, be warned that this has to be an arrangement already in place with your team.  But if you think you could use this kind of cutting out the middle man in your already busy lives, give your team a call and make use of someone's bright idea to make life for their patients easier.

Enjoy!