Hypo is a four letter word

{ 24/09/2009 @ 10:01 pm } · { diabetes }
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Hypo is a four letter word. For some reason I find that quite funny right now..perhaps because I am having a ‘funny’ hypo right now (don’t worry I have had my lucozade and am on the way back up). What is a funny hypo? It’s one in which for some unknown reason I find everything hysterically funny, laugh when it is suggested that I should test my bloodsugar and then proceed to play with my lucozade bottle rather than drink it’s contents. This then requires Ben to plead with me to drink it, which again I find very funny and refuse to drink it. Eventually I do drink it and as the sugar hits I return to normal (whatever ‘normal’ is).

I have several different ‘types’ of hypo much to Ben’s bewilderment.

1. The ‘funny’ hypo: as described above

2. The ’sad’ hypo: where everything is just too much to handle and I cry for absolutely no reason whatsover

3. The ‘angry/aggressive’ hypo: this is when I get really cross and shout at whoever is trying to help me, I push them away if the try to give me lucozade and throw the lucozade across the room. Fortunately I tend not to get too violent and other than a few slaps and a bop on the nose Ben has so far come away unscathed (my poor long suffering husband).

Most diabetics probably have a few really funny hypo stories, me included. This one took place at about 3am one night, I woke up in that all too familiar state of complete disorientation and confusion about why I was roasting hot and in a pool of sweaty wetness. Rather than wake Ben I thought it would be a good idea to sort out my hypo myself. So I got out of bed, stripping off my pyjamas as I went. I couldn’t find the lucozade so picked up a box of cornflakes.

Ben must have heard the rustling so came to the kitchen where he found me sitting on the floor naked, half laughing, half crying whilst eating cornflakes one at a time from the packet! Ben grabbed a bottle of golden syrup and attempted to get some down me whilst I was making desperate efforts to spit it out. He got enough in though and within a few minutes I was up and about and moaning about the stickiness and why he gave me syrup when I don’t like it!

Anyway back to my original point…Hypo is a four letter word. I hate hypo’s. Unless you suffer from them you won’t know just how debilatating they are. Aside from the physical symptoms of shaking, tiredness, dizziness, cold sweating, going pale, crying, laughing etc, there are the cognitive and emotional effects. My thinking slows down, my surroundings become a blur and it’s as if I am trapped in bubble, separated from everything around me. I feel so vulnerable and hate the fact that sometimes hypo’s make me relient on the help of someone else, gah it’s frustrating.

Another blogger has put this much more eloquently than me in a VLog, so I am posting a link to her blog. Kerri is author of  ‘Six Until Me’ and here is a post and VLog about diabetes being an invisible illness, she made the VLog whilst experiencing low blog sugar and it really sums up very well what it is like to experience a hypo. So thanks to Kerri for putting it online.

Kidney infections and insulin pumps

{ 10/09/2009 @ 9:38 pm } · { diabetes }
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Yet again I haven’t blogged for far too long. August was a very busy month mainly taken up with work and nursing the many sick guinea pigs that resulted from an outbreak of an unknown illness. Sadly the illness proved fatal and we have lost the majority of our herd, it is very strange going into the garage as it is so quiet now that there are only 8 piggies and Henry the bunny.

Then at the end of August I became ill with a UTI that rapidly turned into a nasty kidney infection and landed me in hospital. I went to the walk in clinic as I was unable to get an appointment with my own GP. They prescribed me 3 days of antibiotics and told me to go back to my GP if it hadn’t improved after the 3 days. Over the following 3 days I became more unwell, started vomitting and ould barely keep anything down. On getting an appointment with my GP she called the hospital and sent me to A+E as the infection hadn’t improved, my blood sugars were high, I was dehydrated and had ketones in my urine. At the hospital they put my on IV antibiotics to treat the infection, saline to rehydrate me, anti sickness medication and paracetamol to try and get my temperature under control. After 5 days they took me off of the IV’s and onto oral medication. I ended up being in hospital for 8 days as the infection had got into my bloodstream and my temperature kept going up.

Despite feeling so unwell I had a fantastic argument with a doctor on my first day there. He wanted to take me off my insulin pump and put me onto a sliding scale of insulin and a glucose drip. Note that he was was a urology doctor and not a diabetes specialist. I told him what my view was and my reasons for wanting to stay on my pump. He argued that my bloodsugars were high and needed to be brought under control. I argued that althout my bloodsugars were elevated they were a lot lower than they usually were when I get infections and I felt that was down to the good control I can get with my pump. My sugars were running at 12-15mmol, usually when I am sick they are above 20mmol. The doctor was a bit flummoxed at my refusal and tried his best to persuade me otherwise. I asked him to give me 24hrs to get my sugars down and agreed to go on his sliding scale if things hadn’t improved within 24hrs. I was laughing less than 12hrs later when after tweaking my basal rates my bloodsugars were consistently between 4.5-6.5mmol. I also insisted on using my own blood test meter to test with (as it communicates with my pump to calculate correction boluses) and I am glad I did as I felt in control and without that I would have been relient on nurses and doctors who had very limited experience of diabetes.

It really infuriated me that just because it was hospital protocol the doctor was intially unwilling to listen me and blindly stated that I would have better glucose control on a sliding scale than on my pump. He then admitted that he knew nothing about insulin pumps or how they worked and seemed very surprised when he realised that I adjust my insulin doses myself.

Anyway I am glad to be back at home now. Although I was discharged from hospital on Saturday today has been the first day that I have felt almost back to normal. I’m still on antibiotics at the moment and have some kidney pain, but overall I am feeling much better and should be back at work on Monday providing I continue to improve over the weekend.

I’ve found that being on the insulin pump has huge advantages especially when I am unwell. I have managed to keep my bloodsugars at a reasonable level for most of the time I have been unwell. I’ve achieved this by setting up another basal rate profile and using temporay basal rate increases when my bloodsugars started to climb. On average I’ve required 50% more insulin whilst unwell and it has been so easy to give that using the pump. Usually when unwell half the battle is getting my bloodsugars under control, this time after I’d set up the basal rate profile to take into consideration being ill I had no problems with my bloodsugars and I could concentrate on getting well. My pump excels itself yet again!

My 10 minutes of fame…

{ 21/07/2009 @ 10:28 am } · { diabulimia, eating disorders }
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If you have 10 minutes to spare and want to listen to me talking about Diabulimia then go to BBC Radio Leeds Breakfast Show , I was absolutely petrified but as soon as I was on air I forgot that there was a mic infront of me and that people were listening as they’d got me talking about a subject I’m passionate about. I really enjoyed doing it but wished I could have spoken for longer! However as I was leaving I was asked if they can keep my details on file as they might ask me in again when they do a feature on eating disorders.

As I was travelling home I recieved a call from the radio station asking if it was ok to give my phone number to a media agency who had just contacted them asking for my details. I agreed to this and I’ve just come off the phone to them after giving them brief details of my experience, they are interested in running my sotry to send out to national magazines. How hilarious is that…I might be one of those people telling my tragic story in a trashy womens magazine *rolls eyes*. As much as I dislike those magazines it would be amazing to get my sotry in one as they reach such a wide audience that it’s bound to create some awareness of Diabulimia, and an added bonus is that they will pay me for exclusivity which would make a nice donation for Anorexia and Bulimia Care a UK based ED charity that provide sufferers and their families with valuable support as they battle their eating disorders.

I’ve also been contacted by the Diabetes UK rep who did the first media release to say that the Yorkshire Evening Post are interested in doing an article so she has passed my details on to them and I’m waiting for them to contact me.

Leaving Oxford Behind.

{ 20/07/2009 @ 8:16 pm } · { diabetes, diabulimia, eating disorders }
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I’ve been neglecting my blog again; at the weekend several friends told me that I should blog more often. To be honest I hadn’t even realised that they were actually reading my blog! I don’t know why but it always takes me by surprise when people say they have read my blog or make a comment about something they could have only known about if they had read my blog. It really shouldn’t be surprising to me as one of the main points of writing a blog is so that other people can read it, and I usually post links to what I have written on facebook so it’s hardly surprising that some of my friends click the link and arrive here.

Anyway, I’ve had a lovely weekend, going to a wedding, stopping off at my parents house and seeing a close friend who I don’t see nearly enough now that we’ve both left uni. The wedding was lovely, the bride was beautiful and the rainy weather held off for most of the day. I had a fantastic day, seeing many friends that I hadn’t seen since Ben and I got married in Sept 2007. In between the wedding ceremony and the evening reception Ben and I wandered around Oxford. We went to G&D’s (a fantastic ice cream shop that opens till midnight) where I spent much time as a student, usually sipping a diet coke whilst my friends dug into heavenly looking tubs of delicious ice cream in a wide array of flavours. They would ask if I was going to have anything but I would always shake my head and mumble ‘I’m not hungry’. At that point I was at the height of my Diabulimia and rarely ate anything whilst my friends were around, instead preferring to wait until I was the privacy of my own room so  I could binge on hideous amounts of food before ’performing’ my little ritual of bringing it all back up again. But on Saturday I walked into G&D’s, head held high and ordered a tub with not 1 but 3 scoops of that gorgeous ice cream. 1 scoop of Oxford Blue (blue berry), 1 scoop of Golden Secret (vanilla with crunchie bar) and 1 scoop of Super Chocolate. I enjoyed every bit of it (well not quite all, I’d had enough so gave the last bit to Ben), bolused accordingly and then continued with our wandering around Oxford.

Going back to Oxford is always a rather nostalgic experience for me and not always a completely positive one. It’s a place full of memories and not all of them are ones that I want to be reminded of. When I think of Oxford, as well as it being somewhere that I made great friends, did new things and got to know my lovely husband, it’s also a place where I descended further into self destruction, a place where I lived in constant fear of what I was going to do to myself next and the place where my eating disorder took on such force that I had to abandon my education and leave university. Oxford is also the place where I entered into treatment for the first time, it’s where I began to understand what was fuelling my self destruction and to recognise the effect that my declining health was having not only on myself but on the people I love and care about. Oxford is where I completely lost myself but then began to discover myself all over again. I feel torn when I revisit Oxford, part of me wishes I was still there but part of me is glad to have moved on. After being discharged from Cotswold House (eating disorder unit) I planned to stay in Oxford and find a job whilst I thought about returning to uni. But I quickly realised that staying in Oxford would have been disastrous for my recovery so I made the difficult decision to leave and move back home to live with my parents. I left grudgingly as I felt like Oxford was my home and I wanted to remain there but looking back at it now I know that moving home was the best thing for me as it gave me stability and routine that student life just couldn’t provide. As I drove into Oxford on Saturday I had a pang of regret and wondered what it would have been like if I had stayed. However I cannot dwell on the what ifs and maybes. I left Oxford, I didn’t quite manage to leave my mental health problems there but I’ve moved on and changed beyond all recognition, my life is completely different to the life I led just a few short years ago and I’m glad of it. I wouldn’t be where I am today, taking care of my diabetes, no longer being ruled by the eating disorder and working as a Mental Health Support Worker. I fought hard to overcome Diabulimia and leaving Oxford and all that I loved there behind was one of the things I had to do in order to give myself that chance of health and recovery.

Diabetic geekiness

{ 26/06/2009 @ 5:22 pm } · { diabetes, diabulimia }
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Apologies to anyone who was waiting for photos and details of my new insulin pump yesterday…I searched for the camera for a long time to no avail. After looking in all kinds of random places Ben and I suspect that it may have been left at Owen and Natasha’s wedding in Edinburgh several weekends ago. Which is very sad as it was a particularly good camera. Anyway by the time I stopped hunting for the camera I was tired and mid hypo so had some lucozade and went to bed.

The new pump is great. The pump itself looks the same as the old one except that it is black so looks a lot smarter. It comes with a very swish blood tester/remote control which is the best diabetic gadget I have ever owned. Not only can I use it to test my bloodsugars and control my insulin pump but it has lots of extra features.

With it I can:

See pretty graphs, tables and pie charts of my blood sugar readings, insulin intake and carbohydrate intake. Including averages, daily trends and the percentages that I am hitting my targets.

Get bolus advice – this means that it automatically tells me how much insulin I should take depending on what my blood sugar is, how much carbohydrate I have eaten and how much insulin I already have in my system from previous boluses. In order to get it to do this I had to set it up with some numbers first. This includes my insulin sensitivity factor, my insulin:carb ratio and insulin duration. Now when I eat instead of doing complicated maths in my head all I need to do is calculate how much carbohydrate I’m having, enter it into the meter and the rest is worked out for me.

Set reminders of when to change my infusion set, reminders to test at specific times of day eg 2hrs after eating, reminders to recheck my bloodsugar an hour after giving myself a bolus to correct a high bloodsugar. If I really wanted to I could even set it to remind me of diabetes clinic apointments and lab test appointments!

It’s probably quite sad really that I get excited over technology designed to improve my diabetes control, but I don’t care if I sound ever so slightly geekish. I’m a diabetic geek and proud of it.

I mentioned the other day that I had been approached to do an interview about my experiences with Diabulimia. Well I did the interview over the phone and I’ve been sent the Press Release to check whether I agree with what has been written. I’ve checked it over and there are a few minor alterations that I would like to be made, but other than that I think it is a really good article. The plan now is for it to be sent to local and national media, including radio and TV and possibly to a national woman’s magazine. The article contains a short version of my story and the author is hoping that it will encourage journalists to contact her in order to obtain further interviews with me. Exciting stuff really! I sent a few photos of me, spent ages trawling through my photos to try and find some that I looked half decent in, especially if they are going to appear in national press! I guess now I have to wait and see whether anyone wants to publish the article that has been written. Maybe I’ll get a few moments of fame!

Diabulimia Awareness

{ 24/06/2009 @ 6:09 pm } · { diabetes, diabulimia }
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I’m off to diabetes clinic again tomorrow, I’m being upgraded to the new Accu Chek insulin pump. I will be posting pictures and writing all about it when I get back from the hospital.

Today has been a fairly relaxed day off for me, I mowed the lawn and did a few things around the house but other than that I’ve been catching up with various emails and reading other peoples Diabetes related blogs. I’ve been contacted today by a media officer from Diabetes UK, she has seen my website and would like to interview me about my experience with Diabulimia. I’d been contemplating contact Diabetes UK for a while now to ask if they would do an article on Diabulimia but I hadn’t quite got round to it yet. I’m excited at the prospect of being interviewed and hopefully raising some more awareness about the realities and difficulties of Diabulimia. I was talking to Ben last week on our way back from Edinburgh about support for people with Diabulimia and how there is so much available to people with Diabetes and so much available to people with Eating Disorders but when you combine the two together you get a very complex problem for which there is very little support and advice available. That got me thinking…could I set up something? Perhaps initially an informal get together of people in recovery and people currently struggling. It would have to start out small as I don’t have the resources available for a large event but if I can get an initial group together we could then work together to set up a larger event with the aim of raising awareness, sharing information and providing some kind of support to those who currently have none. It’s just an idea at the moment but my brain is whirrling with the possibilities.

Erin the creator of the Diabulimia Awareness group on Facebook has got a new website online. It’s called Diabulimia Helpline and can be found here . There are more websites, online groups, blogs and references to Diabulimia appearing on the web all the time. I get an increasing number of emails each week from people currently suffering with Diabulimia. So many people are looking for help and support  but are not finding it from their diabetes team or their eating disorder team. Often these health care professionals are doing their best to help but it is very rare to come across an eating disorders specialist who also specialises in diabetes, and it is so important that the treatment offered is comprehensive and targeted towards overcoming the specific problems and complications of overcoming an eating disorder whilst regaining control over diabetes. One day I hope to be a health care professional with expertise in both these fields, I have a lot to do in order to be able to achieve that but in the meantime I can continue as I am supporting those people who email me, writing about my experiences and responding to the various students and journalists who contact me from time to time wanting to conduct interviews, in the hope that at least some of what I am doing contributes to helping others in their own struggle and recovery from Diabulimia

Dr Ignorant Fool

{ 18/06/2009 @ 6:40 pm } · { PCOS, diabetes }
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Why do some GP’s appear to be such idiots? Do they sign up for a course in how to talk utter crap to their patients?? I had an appointment today to change the brand of blood test strips on my prescription (*note the sarcasm* because of course they can’t do that over the phone and it’s necessary to use up an appointment slot just for the doctor to click a button on his computer screen). Anyway on changing the strips over to the ones I had requested the doctor asked why I was prescribed so many a month (300 strips), I told him that was how many I need as I test on average 8-10 times per day. Note, I did not ask for his opinion, he’d never met me before and I very much doubt that he had even read my file.

 He looked visibly shocked and told me that I don’t need to test that much, I replied by saying that I test that frequently in order to get an accurate picture of what my bloodsugar is doing so that I can make adjustments to my insulin regime and diet as appropriate. The GP said that it was unecessary and pointless! I disagreed with him but he is clearly set in his opinion and wasn’t interested in listening to mine despite the fact that I’m the patient and live with my condition every day and know better than he does what works for me. I explained to him that I wanted to test that frequently and would continue to do so, I informed him that I was happy with the amount I was testing and that it helped me to achieve tight control of my diabetes and in addition to this my diabetes team at the hospital are aware of the frequency that I test my blood sugar and have never suggested that I reduce this. His response to that was to say, ‘Yes but it is unecessary to test more than a couple of times a day.’ I gave up arguing my opinion at that point as I knew that nothing I would say would make him see things from my point of view.

To add insult to injury he then glanced at a letter in my file and said ‘Hmm, your diabetes is probably caused by your PCOS’. Whatever! Since when has Type 1 Diabetes been caused by PCOS. Yes a lot of people with PCOS are insulin resistant and that is something that contributes to Type 2 Diabetes. But helloooooooo, wake up Dr! You do not know what you are talking about I was diagnosed when I was 2yrs old, I have type 1.  This is not a rant about GP’s as most of them I have seen are extremely well informed, but this particular GP was talking out of his arse!

I had wanted to talk to the Dr about PCOS, but I decided to leave that for when I am next at diabetes clinic and seeing the lovely pre-conception consultant that I’m now under the care of. I was tested for PCOS (poly cystic ovarian syndrome) when I was about 15. I can’t remember exactly, but I think the blood test indicated that I had it but the scan didn’t show any abnormalities. I left it at that as when I was 15 it didn’t make much difference to me whether I had it or not as I wasn’t trying to get pregnant then!

Right eye P0, R2, M0; Left eye P0, R3, M1

{ 16/06/2009 @ 4:44 pm } · { Retinopathy, diabetes }
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I had my appointment with the eye specialist yesterday and I am pleased to say that things aren’t as bad as the letter I recieved made them out to be.

Diagnosis: Right eye - severe non proliferative diabetic retinopathy

                      Left eye – mild proliferative diabetic retinopathy and mild diabetic macular oedema

If you don’t know what the conditions mentioned above click here to go to the National Eye Institute website and read info about Diabetic Retinopathy.

At the moment I need no further treatment (other than to keep maintaining good diabetes control) but I have to go for a check up every three months to monitor the situation as it is likely that I will need laser treatment in the near furture.

I was quite amused by the eye specialist as he noticed my insulin pump and was extremely interested in it. We spent longer talking about how my pump works than we did about my eyes. I’m usually very willing to talk about my pump experience but due to having dilating drops in my eyes I didn’t want to stay longer than necessary in the consultant’s office as the lighting in there was particularly harsh. I was hoping that when I went outside it would still be dark and stormy but the sun had come out and was shining brightly, I must have looked an odd sight making my way back to the bus with my eyes streaming with tears and barely open in an attempt to shut out as much light as possible. I ended up missing my stop as I had closed my eyes to give me some relief and when I opened them I didn’t recognise where I was!! After navigating my way across a busy road I got back on a bus going in the right direction. Got off in the correct place and walked to the bus stop to catch the bus back home. On arriving home I closed the blinds and sat in semi darkness until my pupils had reached a near normal size and I could tolerate the light again.

New website about Diabulimia

{ 12/06/2009 @ 6:48 pm } · { diabetes, diabulimia, eating disorders }
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Through reading Lee Ann’s Blog I found about another new Diabulimia website/forum, Defeat Diabulimia .

A couple of years ago there were no such support sites online at all which is one of the reasons I set up my website as when seeking support online I found nothing and wanted to create a website so that other people looking for support had a resource avaiable.

Although I think it is vital for anyone who has Diabulimia to seek appropriate support from qualified  mental health professionals I also recognise the immense value of having online support from people living with the same condition especially a condition such as Diabulimia where there is unfortunately a severe lack of professionals who have a knowledge and understanding of the disorder. 

If you are in need of support and understanding check out the new forum and support the Defeat Diabulimia Team in getting their site up and running.

Worried is an understatement…Proliferative Retinopathy

{ 03/06/2009 @ 11:24 am } · { Coeliac Disease, Insulin Pumping, Retinopathy, diabetes }
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The past week has been a hectic one with work and travelling to see my family at the weekend, so little time for updating my blog.

Up until Wednesday my bloodsugars had been pretty good and I was confident that I had the correct basal rates set overnight. However Diabetes being the unpredictable condition it is had other ideas. Since Weds I have been going to bed slightly higher than I would like but not drastically high, then on waking at 2am to test have had to take a large correction bolus due to my bloodsugars climbing up into the 20+ mmol range..not what I want to see at 2am! Throughout the rest of the day my levels have been running on the high side, I have always found it difficult to get to a normal level during the day if I am high overnight. I’m increasing my basals tonight so hopefully that will help, I feel much better if I start the day under 7mmol, in general it sets me up for a more stable day.

I wrote about my Retinal Screen a couple of weeks ago (on 18/05), well I recieved a letter through the post telling me that I have Proliferative Retinopathyand have been referred for an urgent appointment with an eye specialist. The letter also states that it is likely that I will require laser surgery. To say I’m worried is an understatement. I know there is no point stressing out about this, at least not until I have seen the eye specialist anyway, but my pessemistic side is trying to barge in and tell me that I’m going blind. 

For my non diabetic and non medical readers here is an explanation: Diabetic Retinopathy is an eye disease that is associated with long standing Diabetes and untreated can lead to blindness. The longer a person has diabetes the higher their chanes of developing retinopathy and prolonged periods of high blood sugar levels (such as when I was battling with Diabulimia) cause damage to blood vessels on the retina (back of the eye). The blood vessels can leak and then become blocked off. This leads to haemorrages (bleeding into the eye) and starves the retina of oxygen which then leads to growth of new blood vessels in the retina. There are stages of retinopathy and  Proliferative Retinopathy is one of the later stages, it is usually treated with laser treatment to reduce the blood vessels.

My appointment is on the 15th, so after that I should have a better idea of how progressed the retinopathy is and what the next steps are. I don’t like the sound of laser treatment (basically burning hundreds/thousands of tiny dots all over my retina) but at the end of the day if my sight is at risk I feel that lasers are the better option to losing my sight at a young age.

On a plus note (of interest to my Coeliac friends), Tescos are now selling a fantastic gluten free bread called ‘Genius’. It truely is Genius! For the first time since I’ve been diagnosed Coeliac (17yrs now) I can enjoy fresh bread that looks like bread, is soft like bread and tastes yummy! It’s £1.99 a loaf and comes in brown and white versions, I’ve tasted the brown one and really enjoyed it and I’ve got a white loaf to see how that is as well. I hope they keep selling it, it always annoys me when a new product becomes available that I like and then after a few months I can’t seem to find it anywhere!

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