Busy Busy Busy

So I had an amazing meeting with Dr Treasure from the Institute of Psychiatry last week. I couldn't quite beleive it when she said that not only did she fully support the idea of a specialist EDDM1 center she wanted to be involved from the outset. She also said that it is something that she and her team have been thinking about for a while. You could have knocked me off my chair to be honest.

Dr Treasure also said that she was interested in working with DWED to produce self help materials which is great

So the next stage is meeting with the hospital managers and seeing what steps we need to take next.

Still can't quite get over that, I thought it would take at least 10 years to find such a high ranking health professional to believe in the cause. :)

So very sad this week :(

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So there I was, watching someone else I knew from my band days begining to make it on the television, feeling sorry for myself, cursing my eating disorder and what it had taken from me, when I got an email from a lady whose sister died of ED-DM1 in June. Logging on to facebook I also recieve a message from a lady whose son died of DKA in January. I am reminded that I have no right to feel sorry for myself, no right at all.


The loss of these young lives (27, 21) makes me so desperately sad. The first time I was contacted by the lady who lost her son I cried for a long time. I cried for her, her son and all of those affected by T1. It was the first real contact I had had with someone affected by a T1 death. This is at heart of what I do at DWED. Ultimately these deaths may have been preventable and that chills me to the bone.


I had a meeting with the Royal College of Nursing's Special Eating Disorders Group last week and it was great. These are the mental health specialists on the front line, and they are desperate for knowledge, training and recognition. The head of the group Jane said how pleased she was that young people like myself were coming through, banner waving. She also said though that it might be hard to keep up the momentum over time.


I respectfully disagreed.


The main thing that I have learnt about ED-DM1 and other diabetes related mental health issues is that the NHS have NO IDEA on how to deal with them and through this ignorance they, in some cases, are making things so so much worse that it's negligent. They are also trying to abdicate responsibility. The NHS are trying to claim that the death of this young man was of 'natural diabetic causes' WRONG WRONG WRONG. THERE IS NOTHING NATURAL ABOUT DYING OF PROLONGED DKA FROM NOT TAKING INSULIN. There were so many disasters with this young mans care, and of the young lady who died. She was told by one councillor that she was FAT. I could go on... it's for another time.


But of course if the death is recorded as 'natural' then no one is at fault, nothing needs to change and no one is held accountable. No one has to look at the systematic failings in the NHS. One of the young women in my group has been hospitalised OVER 90 TIMES,


90 TIMES


So no. I don't think I will 'run out of steam' because I will never ever not be FURIOUS at how the NHS failed these poor young people and their grieving families, how they are continuing to fail 1000s of us daily or how they failed me.

No Smoking

I have stopped smoking. It is not easy but it's been 10 days since I had a fag now. My blood sugar has improved massively but I don't know if it's the fags or my new injection site or my new 'blood sugar lowering vitamins'.

Whatever I'm just pleased it's stable !!!

Letter to the Editor

Having type 1 diabetes raises the risk of developing anorexia or bulimia twofold. 40% of 15 - 30 year old female Type 1's also regularly induce potentially fatal diabetic ketoacidosis by omitting their insulin to loose weight rapidly. There are a plethora of mental health issues that can accompany a diagnosis of type 1, a rare (less than 250,000 in the UK) auto immune disease whereby the immune system accidentally kills off the insulin producing cells in the pancreas. As a result T1's are dependent on synthetic insulin to stay alive, too much is injected and a hypoglycemic coma can occur, not enough and you can die of acidosis. It is a second by second disease that never takes a holiday and requires constant attention. No one knows why Type 1 happens, popular theories include a faulty reaction to a virus or an extreme physical shock. You would not have learned this or the difference between type 1 (typically diagnosed early in life, completely unrelated to diet or lifestyle issues) and type 2 diabetes (typically diagnosed in adults and correlated with diet and lifestyle issues) if you had watched channel 4's the Hospital. There is a huge amount of ignorance surrounding type 1 diabetes, children diagnosed often get bullied as the distinction between this and type 2 is not advertised in the media and people presume it is caused by eating rubbish and being lazy. Perhaps what Channel 4 have missed is that this kind of irresponsible, inaccurate and tabloidesque programming can seriously damage type 1 diabetics. Many feel under extreme pressure to be thin, to detach from the stereotype of an illness that is completely unrelated to their own and like stated above develop very serious eating disorders. At no point at all in the documentary did Channel 4 make the distinction between the two types and the last statement by their 'expert' was that diabetes will become like smoking, cut to the type 1 not taking her insulin and by the way with a blood sugar reading of HI she should have been in front of an A & E nurse not a camera. This is just going to further promote confusion and add to the appalling ignorance faced by t1's everyday. I seriously hope that future broadcasting will take the quarter of a million Type 1's who did NOTHING to encourage the onset of their diabetes into consideration. Channel 4 should be ashamed of themselves they have potentially wiped out the hard work of t1's, their carers and supporters in raising awareness of this truly awful disease. And for what? To prove that teenagers are stupid and irresponsible. Poor, poor show.


Kind Regards

Jacqueline Allan

Director: www.diabeticswitheatingdisorders.org.uk

Out of Hospital :) but Back at Work :(

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So I spent a week in St Thomas Hospital last week. It was a lot better than I though it would be, for a start I had my own room over looking the London eye and the Thames which was beautiful, the nurses were lovely and I got a lot of uni stuff done. However, it was also kill a patient week (junior doctors starting) so the standard of the Doctors I saw was not great. Fistly I had a junior try and explain what diabetes was before asking me if I used insulin ...yep moan ggrrhh. He was so patronising, he looked at my books and said oh you're a psychologist are you, good old Eysenck, pronouncing the authors name completely wrongly but obviously desperate to prove his superior knowledge of all, fortunately I eat juniors like him for breakfast so when he said he had never seen an insulin pump or worked with my consultant I told him I would not be treated by an ignoramous and sent him away with his tail between his legs ha ha ha. My consultant didn't turn up either which really annoyed me so when I got discharged on Friday I went straight to the diabetes clinic and bombared him when he came out his office. The nurses told me after my blood tests that I would be 'sent a letter' with my results, hmm, this is from the same hospital that accidentally booked my appointments on the 2009 calander instead of the 2010 on and then had the cheek to chastise me for missing appointments made for a year ago!!! Results in the post I don't think so. Anyway my consultant has arranged an hour long appointment for me when I come back from France to go through everything - That I think is what one might call a result!!!!

Time of the month, I might as well throw my monitor in the bin!!

Ok so, bit of an icky subject but still worth talking about I reckon. I absolutely hate my period. Not only is it excruciatingly painful and completely unpredictable but it totally TOTALLY screws up my control. All the docs say PCOS PCOS but I've been tested god knows how many times and it's not PCOS. It does stress me out as Premature Ovarian Failure (another lovely autoimmune) runs in my family but the last time I was tested for that it wasn't that either.

Definitely the worst thing about it is the lack of sugar control, not only do I desperately crave food that I can't eat but nothing that I do brings it down. On Sunday I didn't drop under 19 all day despite pumping myself full of insulin, then off to bed I went only to wake in the mofo'er of all hypos at 3am. Not fun, not fun at all.

This appears to be the one thing that being on an insulin pump has not improved. I would just like a little pre warning of when they're going to come so I can prepare myself for the onslaught. Sometimes it's so bad I can't get to work. Urgh feel like crap :( I am currently writing this from work as I couldn't take today off as I have to take a week off from next week to go into hospital to be checked for cushings. All I wan't is to go home curl up with my slippers and wire in the blood. Sometimes I wish I was a non diabetic man

I also get ridiculously bad Odema on top of lovely bloating as my insulin requirements go up so quickly by such a large amount. I actually have a pattern on my Pump to deal with my period, I have to take 40% more insulin and I still spend the vast majority of the time high. And the sweats are bloody ridiculous, I actually woke up this morning wandering if I'd had DKA and pissed the bed, let's just say I'm lucky to have such a supportive boyfriend, it must be like sleeping next to a BBQ.

But

All of this having been said I am still kinda proud that I get periods at all. I had one in the space of the two years I was severely ED - DM1. It's a funny relationship to have I hate them but they are also a testament to the amount of hard work I had to put into recovery. I was sure that they would never come back. I convinced myself that I had ruined that part of my life forever. It was weird when they started again. It was almost like puberty, my hormones started raging, my dr warned me that my sex drive would come back and my god, it did with avengance. That was really hard. I hated the way I looked, my recovering body was a thing of disgust to me and the thought of anyone touching it made me feel physically sick. It reminded me of how I felt all through school, ashamed of feeling desire in a body that was utterly undesirable. To a certain extent I will always think that. Part of ED is a complete inability to accept your body. I guess I realised that there was no point killing myself over something unattainable. There was no magic number, I felt exactly the same about my body in a size 18 as I did in a size 4 exactly the same despair at 14 and 7 stone so what was the point in dying over it?

Why is 'convenience' food never convenient?

Image by Floyd Brown via Flickr

So I had a bit of a domestic with the boy this morning which meant that I ended up storming off to work without eating my breakfast. Luckly there is a little kiosk at the station so I popped in before jumping on the tube. The usual nightmare unfolded of checking labels and wondering how my BS and gut would recact to this or that and I don't know how it happend but I ended up with one of those 'healthy' flapjacks. Healthy my Arse: BS before breakfast 10 Bs after 2 hours and a 5 unit Bolus 17.9. Great way to start the day I'm sure you will agree. So now it's 3 O'clock, I am again knackered beyond belief and really hungry but afraid to eat as I also forgot my lunch. Oh and also my stomach really hurts. I think that this is maybe one of my top 5 gripes about t1 Diabetic (even pre coeliacs) There is no such thing as convenience food. There is no 'grab and go' option. I have never felt comfortable eating anything I have just 'grabbed' from a shop. It doesn't really matter what it is or how many grams of carbs there are in it guaranteed my BS will not react how I expect. It's not as bad as it was when I was on injections but it's still not easy. For example I remember not long after i had been diagnosed I was in work and I got that high feeling, you know, dry mouth, catching at the back of the throat, sore eyes a funny smell and I couldn't for the life of me work out why. So I kept on chugging from my bottle of evian before something on the nutritional label caught my eye - sugar free but thanks to the sweetners 13gs of carbs per 100ml, my body doesn't really like that no not at all and I was very very annoyed. Not even bottled water is convenient. You can also forget take aways I have not successfully eaten a take away since I was diagnosed, if anyone has some ideas for me of what I could have please comment :)

Sometime it just sucks!!

I don't know what is wrong with me but I am done in. I don't know if maybe it is everything with work and the charity and stress of uni but my health has taken a nose dive. I'm so tired and my bloods have been swinging and I feel sick and I'm sweating profusely and I can't sleep. Most people wouldn't be happy with a week in hospital but I can't wait. I am going into hospital for a week of investigation my consultant thinks it might be cushings. Again most people would be worried about the fact that they might have a benign brain tumour but at least if that;s what it is it can be burnt out and then maybe I'll feel better. Or perhaps I'm in denial, perhaps I'm ill due to the latent stress I just don't know.

Unexpected Highs & Lows

Ok so I am feeling a little cheated this week as I have been left with soaring blood sugars yet again after eating 'healthy' 'low gi' options. Firstly

SUSHI: I got a small pack of sushi from tesco on the way to work this morning it raised my blood sugar by 10 even though I had bolused enough - really dissapointed

PORRIDGE: Yes the demon porridge has made a reappearance. I haven't tried to eat it since I got a pump so I thought I'd give it a whirl. BIG mistake. Now I had issues with porridge when I was on injections despite my dietician INSISTING that it is essentially wonderfood for Type 1's so when I ate my porridge on Sunday I actually bolused 2 extra units. BS before breakfast 7 Bolus 6 units. BS 2 hours after breakfast 23. Panic, run pump through, bolus 2 units. BS 1 hour after 22.6

Yep it took FIVE HOURS for blood to start heading back to normal. Very embarrasing as I had to go to the boy's parents house for a BBQ. I turned up looking like Id been hit by bus and found conversation very difficult.

The next dietician who tells me to eat porridge is going to wear it.

So on top of this last week my HR Director asked me why I couldn't 'wean myself' off insulin like her Dad. This was after spending a good 10 minutes trying to explain the difference between t1 and t2. I was so angry! But who do I complain to I mean she is the bloody director. I guess its one of those cases where a little knowledge is a bad thing.

Ok This time the Blog is going to Stick!!

I have been lazy about updating this blog but I am going to start doing it more often from now

There is a load of stuff going on and it's quite stressful really. I love what I do and I will never not do it I just wish that I had more of a clue. Setting up a Not for Profit is not easy and I'm beggining to realise just how complicated EVERYTHING is. I desperately need to get some funding. Arrgghh - Anyone know a famous T1 with an ed?

Carbs Carbs, and some more Carbs

OK so this week I tested Rice, Pasta, Quinoa and Cous Cous,

Day one was cous cous and 1 hour after eating my blood sugar went from 6.7 to 13.9. After 2 hours of eating it was at 19.6

Day two was pasta and at 1 hour my blood sugar had gone from 7.5 to 18 - injected at one hour and regardless of this 3 and a half hours later it was at 20!!!. This is common with what I have experienced with pasta before. I checked my pump and all was well. Need less to say I wont be eating pasta again anytime soon.

Day three was rice and at 1 hour my blood sugar had gone from 8.5 to 19.2 - another abort

Day four was quinoa and my blood sugar went from 9.1 to 16.8

So at the end of the experiment cous cous won the slow release battle but it still raised my sugar substantially after 2 hours. The Quinoa didn't do as well as I had expected but to be honest I was totally full after half a portion so I think I will definitely remember that. Rice and Pasta however are from now a complete NO NO. I may run another experiment with the wholemeal eqivalents at some pont in the near future but all those high blood sugars have made me knackered and in need of a few weeks off.

Testing Conditions

Ok so this week I wanted to test out carbs that you can eat with your evening meal. To ensure that results are not biased in anyway I am going to be on exactly the same amout of basal , eat exactly the same thing during the day and do exactly the same amount of exercise. I am also going to be eating the same meal with my carbohydrate. I have made meatballs with redwine sauce as a portion contains less than 5gs of carbs. I will also be having a glass of red wine with every meal as I wanted to keep the conditions as realistic as possible. I will not be injecting for my evening meal which is quite scary, but all in the quest for information. (please note that if I wasn't on a pump and able to correct immediatley there is no way that I would be doing this. I also certainly do not reccommed it for anyone at home). I will test at 1, 2 and 3 hours after eating unless I deem my blood sugar too high at which time it will be abort mission!! The idea behind this is that we all get told continuosly that this or that is 'good' for us as it releases it's energy (read as sugar) slowly. For anyone who is interested - here are the controlled conditions

Basal: 25 units Daily
Ratios: 0.75/10 grams
Correction 1/2

Pump: Minimed Paradigm Veo
Monitor: One touch Ultra Smart

Breakfast: Greek Yoghurt & Strawberries
Lunch: Tuna and Coleslaw Salad

Recipe for meatballs: Serves 3
12 Meatballs (bought is easiest)
1 can tomatoes
1/2 Glass Red wine
Basil, Oregano, Time
1/2 Onion
Good Handful Mushrooms

Atkins

So here we are again.

I was on Atkins and that was absolutely disasterous. I ended up trying and failing and trying and failing I lost a grand total of 0 pounds over 2 months. I also managed to end up in DKA in Hospital.
The diet was boring. I was sooooo tired and it never picked up. I also developed pains in my knees. My skin went to utter shit and I was physically sick. I ended up taking 4 days off of work and binned the diet - In those four days of 'normal' eating (and therefore higher insulin doses) I also managed to gain 10 pounds that I have not been able to shift.

Would I recommend Atkins to a diabetic - Hell No and here is why

1.) For Atkins to work you need to be in Ketosis - the deeper the purple on the ketostick the better (enough said about that I reckon)
2.) It won't stand up to exercise unless you drastically cut back on insuln which can then swing you the other way.
3.)If you have a hypo you have to break the diet. Being able to resist hypo munchies on this diet is not unlike Chinese water torture
4.) Your Breath STINKS
5.) As a hypothyriod Type 1 the last thing I needed to feel was ...more lethargic. I slept for an average of 2 hours more nightly on this diet and felt 100% more tired