Saturday, 30 June 2007
Anyway I just wanted to talk about how stupid I am..........
I have high blood sugars. Fact.
I need to get them down. Fact.
What did I do this morning? Wait for it.........
I woke up at 9am with a bg of 12.8 (230). What would you do? Correct the high, right? Not me. I have a worry that my gastroparesis will kick in and not absorb my breakfast, so I eat first. I then wait 45 minutes until my bg is now 15.5 (279). Now I take a 2 units bolus plus 2 extended over 45 minutes!!!! This has no correction bolus built in, and is probably not enough to cover the carb in the porridge anyway. I then go out to the Post Office and back a walk of twenty minutes tops. When I get back I test again, still around 15. I fancy a biscuit so I take 2 units and eat 20g carbs.
Half an hour later bg is 13.5 (243). Instead of thinking "oh good its coming down", I think, "Oh god its coming down, I'll keep an eye on it."
Another 20 minutes, bg 12.9 (232)
Another half hour, bg 11.3 (203)
Inside my head, "Oh no, the biscuit didn't absorb, my gastro is playing up, the insulin is in and going to keep working until I drop to zero, panic, panic, panic, drink Lucozade, NOW!!!"
So I did!!!!!!!!!
Guess what? 20 minutes have passed and I'm up to 13.1 (235). What a surprise!!!! My stomach is fine, I wasn't going to die, I'm not panicking.
This is how my mind works all the time at the moment. What am I doing to myself acting this way? More importantly, how do I get over it?
Thursday, 28 June 2007
HbA1c = 11.3
I knew it would be something like that but its still a bummer when you get it back on the official bit of paper. The last one in April was 10.5. I am now worse than I was before I went on the pump 3 years ago. I need to give myself a serious talking to.
What I'm not sure about is if it is a good idea to read other people's blogs or not.
On the one hand, it is wonderful to know that there are other people out there who are going through the same as you. People who understand the ups and downs, and who also have them too. I used to think I was the only person without a HbA1c of 6.5 or less, or who was frightened of lows. I now know I'm not. This is very reassuring. It is also lovely to get comments on my blog from total strangers who are very friendly and helpful. This is only my 5th post and I have already had 9 comments. Thank you to all who have left them.
On the other hand, I have been reading about things that have possibly made me a bit more nervous about my condition. People passing out and waking up in the hospital for instance. This is one of my worst fears (apart from not waking up at all!!) and to be reminded that it does happen is probably not something I want to read. I have never passed out from a hypo, probably because I keep my sugars too high on purpose, and check far too many times a day.
There are also the people who are really good at being a diabetic and it makes me feel bad that I am struggling so much with it.
I will keep reading though, because as my husband says, these people are still around to blog about it, they did recover from these hypos. And I will too.
Monday, 25 June 2007
It started with a session of hypnosis after my first hospital admittance with ketosis. This was about 3 years after my fear and anxiety started. While I was in the hospital waiting to be let out, a hypnotherapist came to see me and set up an appointment at my flat. I was convinced it wouldn't work. When he came he first tested my susceptibility. He made me think that my arm was really heavy, and when it came to lift it, I really couldn't. It was quite strange.
He then made me squeeze my hand tight, and did whatever he did so that if I felt anxious I could squeeze my hand and the feelings would go away. It kind of worked, if I wasn't in too anxious of a state, but if I was in full panic mode, all thoughts of squeezing my hand went out the window.
And this is how all the therapies I have tried since have gone. It's all fine and dandy deciding on what coping mechanisms you can use, and talking it all through with a therapist/psychologist in a calm way in their office, but when it comes down to the nitty gritty of a hypo (or even the thought of one), I completely forget all that, and panic! "Replace your negative thoughts with positive ones," they say. When I am having a panic attack, all I can think of is "Oh my God, Oh no, what am I gonna do, what if I pass out, what if I die, Oh God!!!!!!!!!!" Not really anything positive there, is there?
I have tried Cognitive Behaviour Therapy (CBT) - I get the theory, and the strategy of slowly exposing yourself to the thing you are scared of. But I'm too scared to do it!! So I don't get anywhere.
I tried Eye Movement Desensitisation and Reprocessing (EMDR) - that was pretty successful, but as soon as I had a scare, it all went out the window again.
I tried hypnosis again recently, but was too wound up to relax, in case I went hypo during hypnosis even though I had made sure I wouldn't.
I am now going to have another go at CBT by working through this book, Mind Over Mood. It has had some good reviews.
The irony of the situation is that my husband is a clinical psychologist, he fixes other people all the time, but because he is too close to me, he can't be my therapist. It is VERY frustrating!!
Thursday, 21 June 2007
This afternoon I went to get my blood tests done at the hospital for my review in 2 weeks time. When I left work at 2.45pm my bg was 13.0 (234). I didn't correct because
1. I was about to drive,
2. I was going to be walking to the hospital in about half an hours time, and
3. My bloods tend to fall later in the afternoon anyway. (I need to recheck and sort out the basals).
At 3.15pm it was 10.1 (182). I walked over to the hospital and had the blood taken, and then checked again. 7.5 (135). A drop of 5.5 (99) in an hour. Although I wasn't hypo I started to feel very anxious and took some Lucozade. I just wanted to get home, before the hypo hit if it was going to. How MAD is that?? I was INSIDE a hospital, and I wanted to get home. The hospital was full of doctors and nurses and I was 50 meters from the diabetes dept. My house was a 15 minute walk away and empty! But I left, and headed home. Part way I went in to collect a prescription in the supermarket pharmacy, and checked my bg which was now 8.7 ( 157). Good, going up.
What is this urge to be at home? I guess I see it as my "safe place". I am in control there, and know where everything is, and that it is mine. And my husband is usually there too. But to rather go there, than stay in a hospital for a quarter of an hour longer, what is that all about?
That is an interesting word though - control. I shall revisit that at a later date.............
Wednesday, 20 June 2007
What is gastroparesis?
Gastroparesis, also called delayed gastric emptying, is a disorder in which the stomach takes too long to empty its contents. It often occurs in people with type 1 diabetes or type 2 diabetes. Gastroparesis happens when nerves to the stomach are damaged or stop working. The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped. Diabetes can damage the vagus nerve if blood glucose levels remain high over a long period of time. High blood glucose causes chemical changes in nerves and damages the blood vessels that carry oxygen and nutrients to the nerves. (Follow the link above for more information).
The first symptoms I had were unexplained bouts of vomiting. As it was only about once a year I didn't really think too much about it. I did mention it at a diabetes clinic visit but I was told it could be anything and not to assume that any illnesses I had were necessarily caused by having diabetes. When I had had 2 bouts a few months apart, I mentioned it again, and it was suggested that I go for a gastric emptying test. This couldn't be done at my local hospital so I had to get up early and get a train 20 miles to Liverpool for an 8.30am appointment. I had to fast from the evening before.
On arrival I was seated in front of a large machine which was going to track the food I was about to eat for the next 2 hours. I had to take my insulin and then because the machine was in front of me and I couldn't feed myself, I was spoonfed some porridge, then a sandwich and had to drink a cup of tea through a straw. Most undignified!! All of this was laced with a radioactive substance which would be tracked. I then had to sit still for 2 hours or so. A nurse was with me and basically we just chatted.
The results were that my stomach was emptying slower than it should do. As it was very infrequent, no treatment was suggested apart from tightening up my blood sugars. I think I had that test about 5 or 6 years ago. I continued to have bouts of vomitting lasting a couple of days each, about twice a year, and was given Domperidone which speeds up the activity of the stomach.
The episodes of gastroparesis can occur quite spontaneously. Usually I wake in the early hours of the morning feeling very hot and with what I call "eggy burps" - an awful sulphurous taste. This is caused by undigested food starting to go off in my stomach. A few minutes later I throw up. Now, these episodes are easy to handle as there is no "active" insulin in my system at that time of day, just the basal amounts from the pump. I just don't eat for the rest of the day, check bgs often, keep up fluids - just water usually and sometimes that doesn't stay in! - and wait until it all calms down. I may throw up a few times during the day but eventually it stops. It then takes a couple of days to stop feeling like I've been kicked in the stomach, and then I'm back to normal.
I went onto the pump in August 2004 and it seemed that I was only getting an episide once a year. In March this year I had a different episode. I'd woken up with a bg of 9 (not unusual for me - I am usually running high) and had my insulin and breakfast as usual. About an hour later I felt something wasn't right, and checked my bgs - 8. As they usually shoot up after breakfast I kept an eye on them, and watched as they dropped to 6 in the next half an hour. I guessed something odd was going on and took some Lucozade. The bgs dropped again. More Lucozade and Glucostop, but they kept dropping. At 4.2 we decided to pop over to A&E. By the time I got there, I was shaking and very weak, and was taken straight through and given some toast and jam. It was about another 20 minutes before my bgs were checked, and of course they had started to rise. I started to feel a bit daft, but I am prone to panic when my bgs drop.
I had various bloodtests done and a chest Xray to try to find out what had caused it, and the conclusion was that I had recently had an undetected chest infection. (But I thought infection raised the blood sugar?) I was given antibiotics and sent home after 4 hours. By now my Bgs were 18. The gastroparesis then kicked in and I had my usual vomiting for the rest of the day.
In May I had another early morning episode, but I am now shaken up and expecting it to happen any day at any time. I keep thinking that if my bgs had started off at 4 and had dropped and the glucose hadn't worked I would have gone unconcious. I have never gone unconcious before and this is a really scary thing for me. I am therefore checking bgs, then eating and waiting to check the bgs are rising before I take my bolus. By the time it kicks in, the bgs are far too high into the mid-teens but at least I am nowhere near a hypo.
I now take a Domperidone every morning, and I have been given a prescription for Erythromycin which also encourages stomach activity but I haven't taken them yet. The thing is that between episodes my stomach works absolutely fine and it is only now and again that it doesn't. So I don't want to be taking a long term antibiotic if I don't have to.
I am currently running blood sugars of 10-14 all the time, which I KNOW isn't a good idea. Ggggrrrrrrrrrrrrrrrrrrrrrrr!!!!
Tuesday, 19 June 2007
Anyway, my current situation is not good. I have "lost the plot" as they say. And it is all going on for far too long. A bit of history is required here methinks............
- February 1987 - diagnosed with IDDM aged 18. Started on one insulin injection per day. A few weeks later I went up to 2 injections per day. I was taught the basics of the "exchange system" of carb counting, ie 1 medium apple, 1 egg sized potato = 1 exchange, etc, eat 4 exchanges for breakfast, 6 at lunch blah blah. And snack, snack, snack!!
- June 1987 - retook the A-levels that I had failed the year before.
- October 1987 - went to university in Bangor, N. Wales and 2 days later met Colin. We have been together ever since. During this first year I would go to my hospital check-ups when I was home during the holidays and was told I was one of their better controlled diabetics.
- October 1988 - had a hypo during a lecture, and had to leave the room to sort it out. It went on for longer than any previous ones and in the end I had to ask my friend to come out of the lecture hall and go and see if she could get someone to help me. By pure luck she found a diabetic who brought me Ribena and sat with me until it went off. I never saw him again but I often think he was like a guardian angel.
- A few weeks later I had another hypo in another lecture and again left the room. I then began to get anxious in lectures, waiting for it to happen again, and my hypo phobia began to take hold. After Christmas I started missing lectures and by Easter I was having panic attacks and not leaving the house.
- I struggled through uni with the help of some wonderful friends who brought me lecture notes and I took my exams in sick bay, scraping a 2:2 in June 1990.
- I can't remember exactly when but I went onto MDI and insulin pens.
- Colin and I moved to Wrexham and I had to get a job. I started working in a cafe and then got a full time job in the Path Lab. I was deliberately keeping my blood sugars high to avoid hypos, by not taking enough insulin. I was anxious if the bgs went lower than 12.
- 1991 we moved back to Bangor and I got in touch with the diabetes nurses. They tried some drastic action by taking away my testing kit so that I wasn't able to check my sugars all the time as I was a bit obsessed. I had to go to them to get tested, luckily I worked in the hospital. (However, I didn't give them ALL my strips and had a secret stash that I used when I got in a panic!) That lasted about a couple of weeks.
- I saw a psychiatrist, who it turned out was diabetic, and he told me to carry a sweet in my pocket all the time. Derrrr, I carried enough sweets and lucozade to keep an army marching for weeks!!!
- 1994 - we got married.
- 1996 - we moved to Chester. The diabetes team did their best. I got referred to a clinical psychologist, who by coincidence had done his degree with Colin. He did cognitive behaviour therapy with me, but I was too frightened to do anything he told me to do, but I kept going back until he went to another job 2 years later.
- Around about this time I started getting retinopathy, and had laser treatment, which is ongoing on and off depending if I am stable at each 4 monthly visit. I also got high cholesterol and went onto statins.
- 2003 - We paid privately for me to see a psychotherapist who did EMDR. This was fairly successful and made me think about things in a different way. This also helped when I was given the go ahead for pump therapy in 2004.
- August 2004 - I went on the pump. It was a revelation and I thought the answer to all my problems. But no, the actual psychological problem of the fear and anxiety was still there. My HbA1cs did improve from 9.9 to 8.3.
- Meanwhile, I started to have unexplained bouts of vomiting and had a test which discovered I had gastroparesis. Sometimes my stomach just doesn't absorb the food in it, so my bgs drop dramatically. So I am now keeping my bgs high just incase the food I've just eaten doesn't absorb but the insulin is in and working. I am testing too many times, and my last HbA1c was 10.5. I'm due another one this week for my review in a couple of weeks. I know it will be even higher.
- I am going to be 39 in August and my biological clock is TICKING!!
So the situation is, to boil it down, I am scared of hypos and keep my bgs too high to avoid them. This is causing me problems with the onset of complications, ie gastroparesis and retinopathy, and preventing me from starting a family.
I started off using a Disetronic DtronPlus but have now upgraded to a Accu-Chek Spirit which has a few more features.
I am going to visit other people's blogs and leave comments in the hope that they will possibly be curious to have a read of mine and offer any insights into what I can do. Any help greatly appreciated, thanks.