In some paediatric cancer units, the children are allowed to choose a bead for every medical intervention - each blood draw, chemotherapy dose, x-ray, etc. is recorded onto a long string of beads: their entire cancer journey mapped out in bright colours.
I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!
I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.
This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.
I think now is the time to add the next bead to my bracelet.
These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.
For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!
This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.
My lifelines - my hope for the future.
Showing posts with label gastroparesis. Show all posts
Showing posts with label gastroparesis. Show all posts
Sunday, 3 June 2012
Saturday, 24 March 2012
Health Update (and soup recipe)
I am currently in the middle of a big flare-up of gastroparesis, which started about two months ago. Prior to this flare, I could eat small amounts of most things, and though I often felt nauseous, bloated and uncomfortable, these symptoms were controllable with medication and other techniques. Currently, I'm not able to eat anything solid, and have just spent a week in hospital, where I had some injections of Botox into the lower opening (pylorus) of my stomach. Normally the pylorus holds the stomach closed until the food has been churned and mixed enough for it to be allowed to continue on its journey through the digestive system. The Botox relaxes this muscle, meaning that the food doesn't get stuck in my stomach, but can just drain through by gravity.
I have been advised to stick to a liquid diet, at least for the next few weeks, until we know how effective the Botox has been.
I've lost quite a lot of weight since the start of this most recent flare, so my Gastro team (especially my wonderful dietician) are keeping a close eye on me. It doesn't help that I was already deficient in iron, vitamin D and vitamin B12 - that means I don't have the luxury of a 'nutrient store' to keep me going while I'm not able to eat much. My dietician is watching over me like a hawk with the intention of starting tube feeding as soon as it becomes medically necessary. What we don't want is for me to get to a dangerously low weight (with associated nutritional and electrolyte deficiencies) before anything is done. Having said that, I don't really want to be tube fed at all, either through a temporary NJ tube (from my nose, through my broken stomach and into my small intestine) or through a more permanent tube (PEG-J or PEJ) that would go into my small intestine directly through the skin on my abdomen.
I'm not saying that I can't see the advantages of tube feeding - of course I can. It would take away the pressure of constantly pushing myself to eat and drink despite symptoms; it would give me a way of getting enough calories and other nutrients relatively easily; would stop the weight loss. But it also means a surgical procedure (for the PEG or PEG-J), a tube going into my body 24/7, having to carry a pump and feed around with me (at least initially, if I need to run the feeds during the day as well as overnight). And, of course, it means another visible reminder of what this illness is doing to my body.
So, for now, I will continue to eat and drink as much as I possibly can, and will see what happens.
While in hospital, I couldn't help noticing that almost everything offered to me was sweet. Fortisip milkshakes come in a range of sweet flavours (mocha, chocolate, strawberry, forest fruits, vanilla), and the vitamin/protein-enriched juices are much the same. When my blood sugar was low, I was offered Lucozade and glucose tablets. I have found myself desperately craving other flavours - bitter, sour, salty.
The obvious answer to this (apart from drinking gherkin juice and licking salt and vinegar crisps) is soup. Now that I'm home, I have access to real ingredients, and I am looking forward to eating a range of delicious and varied soups. Last night I had roast butternut squash, carrot and coriander soup. Today is hot and sunny, and just screams 'Gazpacho'! I'm not going to argue with that. I love gazpacho anyway, but the thought of it now, after a week of simple, repetetive flavours makes me want to dance with excitement.
People have been kind enough to share their favourite soup recipes with me via Twitter and email, so I'm building up quite a list. From initially feeling a little bit overwhelmed at the thought of eating nothing but soup, I'm now starting to see the possibilities. From silky-smooth leek and potato to the sharp, cold gazpacho, elegant French onion soup, with its dark, caramel undertones and spicy Thai soups, rich with coconut milk and chilli. This doesn't have to be a limited diet!
The recipe that I'm using for my gazpacho is from Sarah Raven's Garden Cookbook. It serves 6-8 people at normal size portions. Obviously, I will be freezing most of mine!
Ingredients:
3-4 thick slices of slightly stale white bread, crusts removed
2 cloves of garlic
Generous drizzle of olive oil
1 1/2 tbsp red wine vinegar
675 g tomatoes
2 sweet red peppers (from a jar, or roasted and skinned)
1 large mild onion
1 small cucumber
425 ml tomato juice
Salt and black pepper
A few fresh chives
Method:
Tear the bread into small pieces and put them into a large bowl.
Crush the garlic and add it to the bread. Add just enough oil for the bread to absorb, and then stir in the vinegar. Skin, deseed and chop the tomatoes.
Chop the peppers and roughly chop or grate the onion. Deseed and chop the cucumber. Add these to the bowl and mix well. Add the tomato juice and season with salt and pepper.
Blitz the whole thing with a stick blender, or put the mixture into a food processor and process until smooth.
Check the seasoning and add iced water to get the consistency you want. Chill and serve very cold, with a few fresh chives chopped over the top to garnish.
I have been advised to stick to a liquid diet, at least for the next few weeks, until we know how effective the Botox has been.
I've lost quite a lot of weight since the start of this most recent flare, so my Gastro team (especially my wonderful dietician) are keeping a close eye on me. It doesn't help that I was already deficient in iron, vitamin D and vitamin B12 - that means I don't have the luxury of a 'nutrient store' to keep me going while I'm not able to eat much. My dietician is watching over me like a hawk with the intention of starting tube feeding as soon as it becomes medically necessary. What we don't want is for me to get to a dangerously low weight (with associated nutritional and electrolyte deficiencies) before anything is done. Having said that, I don't really want to be tube fed at all, either through a temporary NJ tube (from my nose, through my broken stomach and into my small intestine) or through a more permanent tube (PEG-J or PEJ) that would go into my small intestine directly through the skin on my abdomen.
I'm not saying that I can't see the advantages of tube feeding - of course I can. It would take away the pressure of constantly pushing myself to eat and drink despite symptoms; it would give me a way of getting enough calories and other nutrients relatively easily; would stop the weight loss. But it also means a surgical procedure (for the PEG or PEG-J), a tube going into my body 24/7, having to carry a pump and feed around with me (at least initially, if I need to run the feeds during the day as well as overnight). And, of course, it means another visible reminder of what this illness is doing to my body.
So, for now, I will continue to eat and drink as much as I possibly can, and will see what happens.
While in hospital, I couldn't help noticing that almost everything offered to me was sweet. Fortisip milkshakes come in a range of sweet flavours (mocha, chocolate, strawberry, forest fruits, vanilla), and the vitamin/protein-enriched juices are much the same. When my blood sugar was low, I was offered Lucozade and glucose tablets. I have found myself desperately craving other flavours - bitter, sour, salty.
The obvious answer to this (apart from drinking gherkin juice and licking salt and vinegar crisps) is soup. Now that I'm home, I have access to real ingredients, and I am looking forward to eating a range of delicious and varied soups. Last night I had roast butternut squash, carrot and coriander soup. Today is hot and sunny, and just screams 'Gazpacho'! I'm not going to argue with that. I love gazpacho anyway, but the thought of it now, after a week of simple, repetetive flavours makes me want to dance with excitement.
People have been kind enough to share their favourite soup recipes with me via Twitter and email, so I'm building up quite a list. From initially feeling a little bit overwhelmed at the thought of eating nothing but soup, I'm now starting to see the possibilities. From silky-smooth leek and potato to the sharp, cold gazpacho, elegant French onion soup, with its dark, caramel undertones and spicy Thai soups, rich with coconut milk and chilli. This doesn't have to be a limited diet!
The recipe that I'm using for my gazpacho is from Sarah Raven's Garden Cookbook. It serves 6-8 people at normal size portions. Obviously, I will be freezing most of mine!
Ingredients:
3-4 thick slices of slightly stale white bread, crusts removed
2 cloves of garlic
Generous drizzle of olive oil
1 1/2 tbsp red wine vinegar
675 g tomatoes
2 sweet red peppers (from a jar, or roasted and skinned)
1 large mild onion
1 small cucumber
425 ml tomato juice
Salt and black pepper
A few fresh chives
Method:
Tear the bread into small pieces and put them into a large bowl.
Crush the garlic and add it to the bread. Add just enough oil for the bread to absorb, and then stir in the vinegar. Skin, deseed and chop the tomatoes.
Chop the peppers and roughly chop or grate the onion. Deseed and chop the cucumber. Add these to the bowl and mix well. Add the tomato juice and season with salt and pepper.
Blitz the whole thing with a stick blender, or put the mixture into a food processor and process until smooth.
Check the seasoning and add iced water to get the consistency you want. Chill and serve very cold, with a few fresh chives chopped over the top to garnish.
Friday, 9 March 2012
Acute and Chronic
After writing the last entry (about action plans - here if you missed it), I continued to think about what happens when chronic illnesses flare up enough for me to need help. How to identify the acute exacerbations of my chronic conditions and separate them out from the normal fluctuations of the conditions.
Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.
With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.
Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.
Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.
My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.
I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?
I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?
My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.
I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.
I picture myself on arrival at the hospital:
Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?
That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.
I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.
Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?
Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.
Taxi!
Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.
With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.
Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.
Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.
My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.
I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?
I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?
My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.
I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.
I picture myself on arrival at the hospital:
Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?
That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.
I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.
Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?
Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.
Taxi!
Monday, 6 February 2012
When Even Liquids are a Struggle: Some Advice
Gastroparesis is a condition in which the muscles or nerves of the stomach don't work correctly so the stomach isn't able to empty effectively. Food stays in the stomach for hours longer than it should, causing nausea, bloating, fullness and pain, as well as vomiting.
Because the stomach doesn't empty properly, eating and drinking can be a battle to fight through all the symptoms. Failure to eat or drink enough can cause severe malnutrition and/or dehydration.
One of the easiest things to do when gastroparesis symptoms are severe is to stick to a liquid diet. Liquids empty from the stomach by gravity, so in theory they should cause fewer symptoms than solids. However, even liquids can cause symptoms, so here are a few tips as to how you can maximise nutrition when even liquids are a struggle.
Website: livingwithgastroparesis.com
Books: Living (well!) with Gastroparesis
Eating for Gastroparesis: Guidelines, Tips & Recipes
I'd love to hear from you about any other websites or books that you recommend, or any tips that you find helpful when eating and drinking are a struggle.
Because the stomach doesn't empty properly, eating and drinking can be a battle to fight through all the symptoms. Failure to eat or drink enough can cause severe malnutrition and/or dehydration.
One of the easiest things to do when gastroparesis symptoms are severe is to stick to a liquid diet. Liquids empty from the stomach by gravity, so in theory they should cause fewer symptoms than solids. However, even liquids can cause symptoms, so here are a few tips as to how you can maximise nutrition when even liquids are a struggle.
- Maximise your nutrition and hydration - make every morsel count. Now is not the time for diet drinks.
- Take care of your teeth - chew sugar-free gum to hydrate your mouth and don't brush your teeth within 20 minutes of vomiting. Yes, this feels disgusting, but the acid in vomit softens the tooth enamel, and if you brush too soon, you'll remove precious enamel from your teeth. Rinse your mouth with water immediately, and then brush later.
- Take your anti-emetics (anti-sickness drinks) on a regular schedule. If you can keep the nausea and vomiting at bay, you have a better chance of staying hydrated
- If swallowing is a problem, or if you don't absorb tablets/capsules well, speak to your GP or pharmacist about alternative preparations. Many anti-sickness medications are available as tablets that dissolve in the mouth, or even as a patch that can be stuck on the skin. Other medications may be available as liquids or soluble tablets (or other forms), and capsules can sometimes be opened and the tiny beads inside can be swallowed with a spoon of yoghurt or apple sauce.
- Get help for pain, whether it is in your mouth, throat, stomach, or somewhere else. Bonjela (a gel for teething pain or mouth ulcers) is available over the counter. Don't be afraid to speak to your GP or pharmacist about pain, especially if it's stopping you from eating or drinking.
- Painkillers are better at keeping pain at bay than they are at getting pain under control once it's really established itself. If you've been prescribed painkillers to take regularly, do take them regularly.
- If you've been prescribed NSAIDs (e.g. Aspirin, Ibuprofen, Naproxen, Diclofenac) and find that they are upsetting your stomach, ask your GP or pharmacist if they can recommend an alternative, or if they really are the best medications for you, to prescribe other medication to protect your stomach while you're taking the NSAIDs.
- Be careful of low blood sugars (hypoglycaemia). Symptoms of hypoglycaemia include anxiety, nausea, sweating, hunger, shakiness and weakness. If you find it difficult to spot the symptoms of low blood sugars before they get so low that you collapse in a heap, ask your GP about monitoring your own blood sugars at home, and make sure you get instructions about when you should check your sugars, how low is too low, and what you should do in this situation.
- Taking a supplement of multivitamins/minerals can minimise some of the anxiety associated with not being able to eat. If you know that your micronutrient needs are being met, you can focus on getting hydration and calories. I recommend trying to find supplements in liquid or chewable form, as these are often better tolerated than capsules or tablets. Those designed for children can be more palatable. If you can't tolerate the whole dose, or can't tolerate it every day, don't give up. A little is better than nothing!
- Water is great, but if you're barely managing liquids, your body may need more than just water - try clear liquids, e.g. apple juice, cranberry juice, bouillon, sugary cordials. It's also possible to buy fortified juices, such as Fortijuice, which are clear liquids, but are fortified with extra nutrients and calories.
- Dioralyte (or another rehydration solution) is brilliant if you can tolerate it, as it contains electrolytes and sugars to help replenish what you're losing, especially if you're vomiting or if you have diarrhoea.
- Try setting a timer - every 15 minutes drink a teaspoon full of liquid. This seems like a tiny amount, but if you can tolerate it, you'll be getting 20 ml per hour, or 100 ml every five hours. It all adds up. If you can manage that, try increasing the frequency to every 10 minutes, or the volume to 2 tsp (10 ml).
- Carry a bottle of juice around with you and take a sip every time you remember.
- Using a straw can make it easier to drink quantities, especially if you have a sore mouth.
- Very plain salty crackers, e.g. saltines or water biscuits can help settle the stomach
- Ice lollies (popsicles) are a great way to get those valuable liquids. They are available in minature forms for children, but if even these are too large, try making ice cubes from fruit juice or cordials.
- Ginger is renowned for its anti-nausea properties. A delicious tea can be made from grated ginger, honey and hot water. Strain before drinking.
- Boiled sweets (hard candy) are a good source of sugar. If you can suck these in addition to your liquid diet, they provide calories, flavour and a bit of variety from an entirely liquid diet.
- Get yourself some dextrose tablets to have on hand in case of low blood sugars - you can suck them or rub them against your gums. If you prefer, you can get sugary gel from your pharmacist that has the same effect (try Hypofit or Dextrogel).
Website: livingwithgastroparesis.com
Books: Living (well!) with Gastroparesis
Eating for Gastroparesis: Guidelines, Tips & Recipes
I'd love to hear from you about any other websites or books that you recommend, or any tips that you find helpful when eating and drinking are a struggle.
Dehydration: The Narrative
The day after my last post, I spoke to my GP, who was concerned that I might be dehydrated. I honestly didn't feel too bad, and explained to her that I wasn't feeling more dizzy than usual on standing, and that I was still managing some oral fluids. Dr B was very persuasive, and as she's a new doctor, I thought I'd give her the benefit of the doubt. Better to have a doctor who is overcautious than one who really doesn't care at all. So Dr B faxed a letter to the A&E department at my local hospital, and I gathered a few bits and pieces and then made my way there.
As usual, the waiting room was heaving. There was barely a place to sit, especially as I was trying to avoid people who were eating things, so as not to aggravate my nausea. Of course, I ended up sitting in front of the vending machines. And then someone came and sat in the seat behind mine, chewed in my ear, wanted to talk to everyone in the vicinity (including me) and then, horror of horrors, pulled out a cigarette and lit up. Yes, it's illegal to smoke in public buildings, but did she care? Really not. Thankfully, that was enough to get her kicked out by security to wait outside until her name was called.
Despite the busyness of the department, I was so impressed by the attitude of all the staff. They were all so kind, going out of their way to look after all the patients who were waiting, and even kept a sense of humour. So I was feeling quite calm by the time I was eventually called back to be seen. My nurse got IV access (first time!) and checked my blood sugar, which was low. She got me started on the dextrogel, which is an oral gel to bring my blood sugar back up to normal, and then the doctor came in to see me.
Dr C, who has met me a few times before, and has an idea of my complex history, but walked into the cubicle, took one look at me, and stated "You're not dehydrated - you look fine!" He went on to say that I could have some IV fluids, and that I should let them know when I felt ready to go home. He ordered a venous gas, in addition to the bloods already requested, so that they could get an instant idea of my fluid status.
30 seconds later, I heard running, and Dr C burst through the curtain into my cubicle, to tell me that I was, in fact 'crispy dry' and acidotic (my blood was more acidic than usual - this is generally considered Not A Good Thing). There was quite a lot of running around while people organised lots of IV fluids and dextrose, which improved my mood and made me feel a lot better. I was able to talk myself out of an admission, on the condition that I would keep a close eye on my blood sugars and continue to try to push fluids.
I'm totally ready for this gastroparesis flare to be over. Pushing fluids at home is possible, but spending the weekend with family who don't know me very well was difficult. Having to turn down generous American hospitality, which included bowls and bowls of candy, chips, olives, etc. as well as HUGE meals. I maxed out on my antiemetics and forced down as much food as possible so as not to appear rude, but still had to field such comments as 'you really do eat very little' and 'you're like my Mum (my grandmother) - she always ate like a bird' and the more hurtful 'you're very big for someone who eats so little'.
Glad to be home!
As usual, the waiting room was heaving. There was barely a place to sit, especially as I was trying to avoid people who were eating things, so as not to aggravate my nausea. Of course, I ended up sitting in front of the vending machines. And then someone came and sat in the seat behind mine, chewed in my ear, wanted to talk to everyone in the vicinity (including me) and then, horror of horrors, pulled out a cigarette and lit up. Yes, it's illegal to smoke in public buildings, but did she care? Really not. Thankfully, that was enough to get her kicked out by security to wait outside until her name was called.
Despite the busyness of the department, I was so impressed by the attitude of all the staff. They were all so kind, going out of their way to look after all the patients who were waiting, and even kept a sense of humour. So I was feeling quite calm by the time I was eventually called back to be seen. My nurse got IV access (first time!) and checked my blood sugar, which was low. She got me started on the dextrogel, which is an oral gel to bring my blood sugar back up to normal, and then the doctor came in to see me.
Dr C, who has met me a few times before, and has an idea of my complex history, but walked into the cubicle, took one look at me, and stated "You're not dehydrated - you look fine!" He went on to say that I could have some IV fluids, and that I should let them know when I felt ready to go home. He ordered a venous gas, in addition to the bloods already requested, so that they could get an instant idea of my fluid status.
30 seconds later, I heard running, and Dr C burst through the curtain into my cubicle, to tell me that I was, in fact 'crispy dry' and acidotic (my blood was more acidic than usual - this is generally considered Not A Good Thing). There was quite a lot of running around while people organised lots of IV fluids and dextrose, which improved my mood and made me feel a lot better. I was able to talk myself out of an admission, on the condition that I would keep a close eye on my blood sugars and continue to try to push fluids.
I'm totally ready for this gastroparesis flare to be over. Pushing fluids at home is possible, but spending the weekend with family who don't know me very well was difficult. Having to turn down generous American hospitality, which included bowls and bowls of candy, chips, olives, etc. as well as HUGE meals. I maxed out on my antiemetics and forced down as much food as possible so as not to appear rude, but still had to field such comments as 'you really do eat very little' and 'you're like my Mum (my grandmother) - she always ate like a bird' and the more hurtful 'you're very big for someone who eats so little'.
Glad to be home!
Wednesday, 1 February 2012
Negotiating with Doctors
Once again, a brief apology for being out of touch. I know that many of you have been worrying about me. I haven't been as well as usual, but am managing things at home with the help of my wonderful doctor.
I saw my doctor, Dr B, this morning. I had a double appointment and took with me the list that I made after our last meeting (which I described in my last post). Dr B read through it all carefully, even checking that I was happy with all my current medications. After listing all my symptoms (yes, all of them), I wrote a Top 10 list of the things that affect my quality of life the most, and suggested ways in which these things might be treated.
Many patients, however knowledgeable they are about their own condition, are reluctant to make suggestions, ask to try specific treatments, or even to ask for a referral to a specialist. Many of us even shy away from telling doctors how bad things really are for fear of being labeled as drug-seeking or malingering.
A good doctor will listen to your suggestions and explain what they think. They may not agree with you, but you deserve an explanation rather than a flat-out refusal. If you have a reason for your suggestion (e.g. it's part of the guidelines for treatment of your condition, or peer-reviewed research from a reputable journal), explain that to your doctor. Your doctor deserves an explanation as much as you do, and they're more likely to agree with you if they understand your reasons for suggesting a particular treatment.
The number of conditions that most doctors encounter in a single week is daunting. The number of guidelines for each of those conditions is daunting. This is just for the common conditions. Expecting your doctor to know the guidelines for your rare conditions as well as you do is not fair. They may find time to read the guidelines for your condition once they've met you, but if you want to be proactive and read them, then do, though remember that your doctor may have good reasons for treating you differently, especially if they're a specialist. Ask them to explain their reasons.
Most doctors work extremely hard, and are extremely knowledgeable. This doesn't mean that you're not allowed to disagree with them, and certainly doesn't mean that you can't see a different doctor if you feel that they're not a good 'fit' for you. I saw a GP at my local clinic when I was having a severe asthma flare. I'd increased my steroids to maximum and despite using my nebuliser every 2 hours, was still short of breath at rest. This particular GP recommended that I go home and start to reduce my steroid dose. This advice was not just ill-informed (about a condition that affects approximately 1 in 10 people in the UK), but actually dangerous, and the doctor refused to listen to any of my suggestions. Needless to say, I try to avoid that doctor now.
But back to my lovely doctor. Dr B was concerned about my chest and my stomach. I do have a chest infection, but I explained to Dr B that I've increased my steroids and nebulisers to maximum, and that I have antibiotics on hand, which I will take if I get a fever or other concerning symptoms. I've struggled a bit with keeping my oxygen levels up, but apart from that I feel that my symptoms are as well-controlled as they can be, and that I just need to support my body while it recovers from this infection. Dr B checked my oxygen levels and peak flow, and listened to my chest, and agreed that I'm giving my body enough support for now.
My stomach was a different matter. I've not been able to keep food or water down since Sunday night. This is not a new thing for me, but it is worse than usual. Dr B was keen that I should go straight to the hospital for IV fluids. I don't feel that I'm at that point yet, and explained what I planned to do in order to avoid the hospital:
1. Set a timer every 15 minutes and try to drink 5 - 10 ml each time it rings
2. Vary the liquids I'm drinking (I can't tolerate Dioralyte rehydration solution, but I can get electrolytes from other liquids)
3. Monitor my output
4. Take regular anti-emetics
Dr B agreed that this was a reasonable plan, but wanted me to promise that I would go to the hospital if things 'got worse'. I find this a bit vague, as it could mean anything from managing to drink 10 ml less than yesterday all the way through to passing out from severe dehydration. So we agreed specific parameters:
1. If my systolic blood pressure drops below 100 mmHg, or if I faint (this is slightly difficult, as I have autonomic dysfunction, so I do faint sometimes anyway, but I still think it's reasonable)
2. If my resting heart rate increases above my normal by 10 bpm
3. If my urine output drops below 300 ml per day
4. If I'm still not keeping liquids down by Friday
I left the appointment feeling very positive and confident that I could manage my own condition, and that I knew how to recognise problems and what to do if things deteriorate.
So, tips for successful appointments:
I saw my doctor, Dr B, this morning. I had a double appointment and took with me the list that I made after our last meeting (which I described in my last post). Dr B read through it all carefully, even checking that I was happy with all my current medications. After listing all my symptoms (yes, all of them), I wrote a Top 10 list of the things that affect my quality of life the most, and suggested ways in which these things might be treated.
Many patients, however knowledgeable they are about their own condition, are reluctant to make suggestions, ask to try specific treatments, or even to ask for a referral to a specialist. Many of us even shy away from telling doctors how bad things really are for fear of being labeled as drug-seeking or malingering.
A good doctor will listen to your suggestions and explain what they think. They may not agree with you, but you deserve an explanation rather than a flat-out refusal. If you have a reason for your suggestion (e.g. it's part of the guidelines for treatment of your condition, or peer-reviewed research from a reputable journal), explain that to your doctor. Your doctor deserves an explanation as much as you do, and they're more likely to agree with you if they understand your reasons for suggesting a particular treatment.
The number of conditions that most doctors encounter in a single week is daunting. The number of guidelines for each of those conditions is daunting. This is just for the common conditions. Expecting your doctor to know the guidelines for your rare conditions as well as you do is not fair. They may find time to read the guidelines for your condition once they've met you, but if you want to be proactive and read them, then do, though remember that your doctor may have good reasons for treating you differently, especially if they're a specialist. Ask them to explain their reasons.
Most doctors work extremely hard, and are extremely knowledgeable. This doesn't mean that you're not allowed to disagree with them, and certainly doesn't mean that you can't see a different doctor if you feel that they're not a good 'fit' for you. I saw a GP at my local clinic when I was having a severe asthma flare. I'd increased my steroids to maximum and despite using my nebuliser every 2 hours, was still short of breath at rest. This particular GP recommended that I go home and start to reduce my steroid dose. This advice was not just ill-informed (about a condition that affects approximately 1 in 10 people in the UK), but actually dangerous, and the doctor refused to listen to any of my suggestions. Needless to say, I try to avoid that doctor now.
But back to my lovely doctor. Dr B was concerned about my chest and my stomach. I do have a chest infection, but I explained to Dr B that I've increased my steroids and nebulisers to maximum, and that I have antibiotics on hand, which I will take if I get a fever or other concerning symptoms. I've struggled a bit with keeping my oxygen levels up, but apart from that I feel that my symptoms are as well-controlled as they can be, and that I just need to support my body while it recovers from this infection. Dr B checked my oxygen levels and peak flow, and listened to my chest, and agreed that I'm giving my body enough support for now.
My stomach was a different matter. I've not been able to keep food or water down since Sunday night. This is not a new thing for me, but it is worse than usual. Dr B was keen that I should go straight to the hospital for IV fluids. I don't feel that I'm at that point yet, and explained what I planned to do in order to avoid the hospital:
1. Set a timer every 15 minutes and try to drink 5 - 10 ml each time it rings
2. Vary the liquids I'm drinking (I can't tolerate Dioralyte rehydration solution, but I can get electrolytes from other liquids)
3. Monitor my output
4. Take regular anti-emetics
Dr B agreed that this was a reasonable plan, but wanted me to promise that I would go to the hospital if things 'got worse'. I find this a bit vague, as it could mean anything from managing to drink 10 ml less than yesterday all the way through to passing out from severe dehydration. So we agreed specific parameters:
1. If my systolic blood pressure drops below 100 mmHg, or if I faint (this is slightly difficult, as I have autonomic dysfunction, so I do faint sometimes anyway, but I still think it's reasonable)
2. If my resting heart rate increases above my normal by 10 bpm
3. If my urine output drops below 300 ml per day
4. If I'm still not keeping liquids down by Friday
I left the appointment feeling very positive and confident that I could manage my own condition, and that I knew how to recognise problems and what to do if things deteriorate.
So, tips for successful appointments:
- Go into the appointment with a plan - what do you want to address at this appointment?
- Be honest about your symptoms. Write them down if necessary.
- Don't be afraid to ask questions.
- Make suggestions if you have them.
- Listen to your doctor's advice.
- Ask for clarification if necessary.
- Make sure you come away with a plan, written down if it helps you to remember.
Monday, 28 November 2011
Being Bedbound
The idea of being bedbound means different things to different people. In its most pure form, it means that someone is unable to get out of bed at all, and may need to lie flat for all or most of the time. More commonly, it is used to describe a situation in which someone spends the vast majority of their time in bed, though they may be able to go to the bathroom or transfer to another place to lie down.
Chronic conditions often fluctuate, meaning that while there are times when I can leave the house, and drive myself to a hospital appointment or other appointment and back, these activities tend to have repercussions, especially if I push past those warning signals that tell me I should be in bed! I'm 30 years old, and have lived with these conditions all my life. Of course I push past my warning signals sometimes!
I had a fun, productive and busy week last week. I thought that I'd paid for the excess movement when I had a 'crash day' midweek and could do nothing but sleep, but apparently not. I slept for 14 hours on Saturday night, and then spent most of Sunday horizontal on the sofa. Today has been much the same - horizontal on the sofa, packed around with pillows and duvet and hot water bottles; drugged to the eyeballs in an attempt to get control over the pain, nausea & vomiting and dizziness. I can't tell you how many attempts I've made at writing this post through the haze of medication that destroys any clarity of thought.
Ideally, on days like this, bed is the place to be.
In order to stay in bed (my snuggly prison, as my friend M calls it), I need certain supplies. When I was last properly bedbound in May of this year, I could crawl from my bed to the bathroom (though I collapsed and hurt myself a few times) but there was no way that I could make it downstairs. So I came up with the idea of having a 'snack station' for times like this.
The Snack Station is not for midnight feasts (well, maybe it is sometimes), but is a selection of snacks that I can tolerate even when my tummy is really playing up, and which allow me to remain fed and watered without getting out of bed. Several of my medications have to be either dissolved in water or taken with food, so it's important that I have food and water so that I can take the medications I need.
The essentials:
UHT skimmed milk (in small cartons - 500 ml or less)
Nesquick instant milkshake powder (this is fortified with sugar and vitamins)
Nutrigrain bars (low in fat and fibre, but relatively high in energy, and some contain pureed fruit)
Pretzels (low in fat & fibre if you get the right brand)
Snack-a-Jacks (come in lots of different flavours - low in fat & fibre)
Bottled water
Snack-size cartons of fruit juice (some have added vitamins and minerals)
For those of you in the US, Orgain is a great option as an organic liquid meal replacement. Here in the UK we have to put up with Scandishakes, Fortisip, Fortijuice, Forticreme, etc. You can ask your dietitian.
The kit:
Scissors
Dycem (sticky plastic stuff for getting a grip with weak hands)
Plastic cups
Plastic spoons
Drinking straws
Baby wipes
Paper napkins
I have been bedbound, or virtually so, for up to 6 months in the past. If that happened again, I would invest in a small kettle, microwave and refrigerator to live by my bed.
In the shorter term, I can ask Richard to bring thermos flasks of hot water and cold water upstairs before he leaves for work so that I can make myself hot drinks (bouillon and ribena are good; instant breakfast and cup-a-soups are edible in an emergency).
This list would also make a handy travel list of things that can be carried relatively easily and give a guaranteed supply of food and drink that don't provoke symptoms. Trying to find a shop in a new city or country (especially if you don't speak the local language) that will cater for a very restricted diet can be stressful. Especially if your blood sugar is tanking with every step you take!
So, it looks as though I'm confined to the Snuggly Prison for at least the next couple of days. I'm not miserable about that (it was worth it to be able to get my hair cut) but it's good to be prepared. Look out for pictures once I've set up my bedroom Snack Station!
If I'm stuck in bed for longer than a few days, you may also get some pictures of a bedroom Craft Station, but hopefully not. I have grand plans for the study...
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Chronic conditions often fluctuate, meaning that while there are times when I can leave the house, and drive myself to a hospital appointment or other appointment and back, these activities tend to have repercussions, especially if I push past those warning signals that tell me I should be in bed! I'm 30 years old, and have lived with these conditions all my life. Of course I push past my warning signals sometimes!
I had a fun, productive and busy week last week. I thought that I'd paid for the excess movement when I had a 'crash day' midweek and could do nothing but sleep, but apparently not. I slept for 14 hours on Saturday night, and then spent most of Sunday horizontal on the sofa. Today has been much the same - horizontal on the sofa, packed around with pillows and duvet and hot water bottles; drugged to the eyeballs in an attempt to get control over the pain, nausea & vomiting and dizziness. I can't tell you how many attempts I've made at writing this post through the haze of medication that destroys any clarity of thought.
Ideally, on days like this, bed is the place to be.
In order to stay in bed (my snuggly prison, as my friend M calls it), I need certain supplies. When I was last properly bedbound in May of this year, I could crawl from my bed to the bathroom (though I collapsed and hurt myself a few times) but there was no way that I could make it downstairs. So I came up with the idea of having a 'snack station' for times like this.
The Snack Station is not for midnight feasts (well, maybe it is sometimes), but is a selection of snacks that I can tolerate even when my tummy is really playing up, and which allow me to remain fed and watered without getting out of bed. Several of my medications have to be either dissolved in water or taken with food, so it's important that I have food and water so that I can take the medications I need.
The essentials:
UHT skimmed milk (in small cartons - 500 ml or less)
Nesquick instant milkshake powder (this is fortified with sugar and vitamins)
Nutrigrain bars (low in fat and fibre, but relatively high in energy, and some contain pureed fruit)
Pretzels (low in fat & fibre if you get the right brand)
Snack-a-Jacks (come in lots of different flavours - low in fat & fibre)
Bottled water
Snack-size cartons of fruit juice (some have added vitamins and minerals)
For those of you in the US, Orgain is a great option as an organic liquid meal replacement. Here in the UK we have to put up with Scandishakes, Fortisip, Fortijuice, Forticreme, etc. You can ask your dietitian.
The kit:
Scissors
Dycem (sticky plastic stuff for getting a grip with weak hands)
Plastic cups
Plastic spoons
Drinking straws
Baby wipes
Paper napkins
I have been bedbound, or virtually so, for up to 6 months in the past. If that happened again, I would invest in a small kettle, microwave and refrigerator to live by my bed.
In the shorter term, I can ask Richard to bring thermos flasks of hot water and cold water upstairs before he leaves for work so that I can make myself hot drinks (bouillon and ribena are good; instant breakfast and cup-a-soups are edible in an emergency).
This list would also make a handy travel list of things that can be carried relatively easily and give a guaranteed supply of food and drink that don't provoke symptoms. Trying to find a shop in a new city or country (especially if you don't speak the local language) that will cater for a very restricted diet can be stressful. Especially if your blood sugar is tanking with every step you take!
So, it looks as though I'm confined to the Snuggly Prison for at least the next couple of days. I'm not miserable about that (it was worth it to be able to get my hair cut) but it's good to be prepared. Look out for pictures once I've set up my bedroom Snack Station!
If I'm stuck in bed for longer than a few days, you may also get some pictures of a bedroom Craft Station, but hopefully not. I have grand plans for the study...
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Wednesday, 23 November 2011
Days Like This
Despite my best efforts to remain positive and grateful to be alive in this incredible and beautiful world, there are days when things get in the way of that.
Today, for example, I have a fever. It's only 38.5 C (101.3 F), but it's enough to make me feel very shivery, even with a thick knitted cardigan, hiking socks, a duvet, a hot drink and a hot water bottle. Yes, I look ridiculous, but I was feeling miserable, and needed to be warm!
My blood sugars are running low enough for me to feel symptomatic, but whatever is causing the fever seems to be upsetting my tummy, and my gastroparesis/intestinal dysmotility are both flaring up like you wouldn't believe. My dysautonomia symptoms are through the roof, and my pain levels are higher than they have been for a while. Whatever this thing is, it's really hit my poor body hard! I haven't managed to eat anything today, but I am keeping sips of sugary drinks down, and I have some glucose tablets here that I can suck or dissolve in water, if necessary.
I thought that I would be ok to work through my to-do list while lying on the sofa, but felt so miserable that all I could do was sleep. I didn't even manage to get online to buy some really cute gift tags for the Christmas presents that I started to wrap! On the plus side, I've started a new knitting project, and a managing a few rows at a time with lots of encouragement from my online friends at Ravelry!
Typing is making me feel dizzy and more nauseous, so I'll stop soon, but I'd like to wish my US readers a very happy Thanksgiving. The lovely Rachel from talesofrachel.com is generously moderating chat on the forum of the Chronic Babes website tomorrow for those who would like some company on Thanksgiving, or who just want a break from people who don't 'get it' and some positive words from people who do!
On days like these it's my friends and family who get me through, and who give me the strength to come through the darkest and most difficult moments, ready to face the next day with a smile.
Thank you.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Today, for example, I have a fever. It's only 38.5 C (101.3 F), but it's enough to make me feel very shivery, even with a thick knitted cardigan, hiking socks, a duvet, a hot drink and a hot water bottle. Yes, I look ridiculous, but I was feeling miserable, and needed to be warm!
My blood sugars are running low enough for me to feel symptomatic, but whatever is causing the fever seems to be upsetting my tummy, and my gastroparesis/intestinal dysmotility are both flaring up like you wouldn't believe. My dysautonomia symptoms are through the roof, and my pain levels are higher than they have been for a while. Whatever this thing is, it's really hit my poor body hard! I haven't managed to eat anything today, but I am keeping sips of sugary drinks down, and I have some glucose tablets here that I can suck or dissolve in water, if necessary.
I thought that I would be ok to work through my to-do list while lying on the sofa, but felt so miserable that all I could do was sleep. I didn't even manage to get online to buy some really cute gift tags for the Christmas presents that I started to wrap! On the plus side, I've started a new knitting project, and a managing a few rows at a time with lots of encouragement from my online friends at Ravelry!
Typing is making me feel dizzy and more nauseous, so I'll stop soon, but I'd like to wish my US readers a very happy Thanksgiving. The lovely Rachel from talesofrachel.com is generously moderating chat on the forum of the Chronic Babes website tomorrow for those who would like some company on Thanksgiving, or who just want a break from people who don't 'get it' and some positive words from people who do!
On days like these it's my friends and family who get me through, and who give me the strength to come through the darkest and most difficult moments, ready to face the next day with a smile.
Thank you.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Friday, 18 November 2011
White Chocolate and Cranberry Cookies
These started life as Nigella Lawson's chocolate chip cookies. Which look very nice, except that I didn't have any milk chocolate chips (or even milk chocolate) in the house. What I did have was white chocolate chips. And dried cranberries.
I'm not sure the results really bear much resemblance to Nigella's cookies, but they've got rave reviews with everyone who has tried them. I haven't been feeling well enough to eat, though I did try a bite of Richard's. I think they could be improved by leaving out the mixed spice and adding some orange zest, and maybe swapping the Cointreau for Grand Marnier. I'll let you know how the new ones turn out - I plan to give people a few days to recover before making the next batch!
I am often asked why I bother to cook, and especially why I bother to cook things that I can't eat. I have gastroparesis, which means that my stomach empties too slowly, leaving me feeling nauseous (with or without vomiting), bloated and in pain after eating even just a small amount. There is no cure, but symptoms can be improved by eating smaller meals more often (large volumes empty from the stomach more slowly), increasing liquid calories (liquid empties more easily than solid food) and cutting down on fat and dietary fibre, both of which slow stomach emptying. These cookies are very definitely not on the list of gastroparesis-friendly things to eat.
Having said that, I can have a bite of cookie and enjoy it. I could even have a whole cookie if I thought it was worth the consequences! I enjoy the process of baking and find that it relaxes me. My husband and friends (and Richard's colleagues at work, who are often the recipients of large baking sprees) enjoy the results of my baking, and I don't usually feel bad about not being able to eat. I have a cup of tea and enjoy the company.
An unexpected bonus of spending pleasurable time in the kitchen is that I don't resent taking a bit of time out of my baking schedule to prepare tiny gastroparesis-friendly meals (or large meals that can be split into small portions and frozen). My freezer is full of healthy, flavoursome, gastroparesis-friendly meals and snacks - it is wonderful to be able to grab something out of the freezer on a bad day, or when I'm a bit pushed for time.
If I'm not already in the kitchen, I am more likely to snack on less nutritious foods, so I try to plan my meals carefully each week - it's very easy to pop a tray of butternut squash or sweet potato into the oven while it's hot, or boil some potatoes while I'm waiting for something in the oven. Good use of time, good use of electricity to put the oven on for more than one thing at a time, and good for my nutrition to be able to eat pureed butternut squash with rice,or a tiny bread roll with tahini instead of yet another bowl of cereal!
So here is the recipe:
Ingredients (makes about 16 large cookies):
125 g (1/2 cup) butter, softened
150 g (3/4 cup) soft light brown sugar
100 g (1/2 cup) golden caster sugar
1 egg
1 egg yolk
300 g (3 cups) plain (all purpose) flour
1/2 tsp bicarbonate of soda (baking soda)
1 tsp ground mixed spice
200 g (1 cup) white chocolate chips
50 g (1/3 cup) dried cranberries
45 ml (3 tbsp) Cointreau or Grand Marnier (or orange juice, for a non-alcoholic version)
Method:
Preheat the oven to 170 C (375 F) and line a tray with baking paper.
Soak the cranberries in the Cointreau, Grand Marnier or OJ for about 15 minutes, or until most of the liquid has been absorbed.
Cream together the softened butter and sugars until light and fluffy. Beat in the egg and egg yolk, followed by the flour, bicarbonate of soda and mixed spice. Finally, stir in the chocolate chips and cranberries.
Using a 1/4 cup measure (or 60 ml ice cream scoop), measure out a tray-full of cookies, leaving plenty of space between each one. I got two trays of 8 cookies each out of this quantity.
Bake for 13-17 minutes, until the tops are starting to crack and the edges are starting to brown. Leave the cookies alone on the tray for 5-10 minutes to recover from the ordeal of having been in the oven, then transfer them to a wire rack to finish cooling.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
I'm not sure the results really bear much resemblance to Nigella's cookies, but they've got rave reviews with everyone who has tried them. I haven't been feeling well enough to eat, though I did try a bite of Richard's. I think they could be improved by leaving out the mixed spice and adding some orange zest, and maybe swapping the Cointreau for Grand Marnier. I'll let you know how the new ones turn out - I plan to give people a few days to recover before making the next batch!
I am often asked why I bother to cook, and especially why I bother to cook things that I can't eat. I have gastroparesis, which means that my stomach empties too slowly, leaving me feeling nauseous (with or without vomiting), bloated and in pain after eating even just a small amount. There is no cure, but symptoms can be improved by eating smaller meals more often (large volumes empty from the stomach more slowly), increasing liquid calories (liquid empties more easily than solid food) and cutting down on fat and dietary fibre, both of which slow stomach emptying. These cookies are very definitely not on the list of gastroparesis-friendly things to eat.
Having said that, I can have a bite of cookie and enjoy it. I could even have a whole cookie if I thought it was worth the consequences! I enjoy the process of baking and find that it relaxes me. My husband and friends (and Richard's colleagues at work, who are often the recipients of large baking sprees) enjoy the results of my baking, and I don't usually feel bad about not being able to eat. I have a cup of tea and enjoy the company.
An unexpected bonus of spending pleasurable time in the kitchen is that I don't resent taking a bit of time out of my baking schedule to prepare tiny gastroparesis-friendly meals (or large meals that can be split into small portions and frozen). My freezer is full of healthy, flavoursome, gastroparesis-friendly meals and snacks - it is wonderful to be able to grab something out of the freezer on a bad day, or when I'm a bit pushed for time.
If I'm not already in the kitchen, I am more likely to snack on less nutritious foods, so I try to plan my meals carefully each week - it's very easy to pop a tray of butternut squash or sweet potato into the oven while it's hot, or boil some potatoes while I'm waiting for something in the oven. Good use of time, good use of electricity to put the oven on for more than one thing at a time, and good for my nutrition to be able to eat pureed butternut squash with rice,or a tiny bread roll with tahini instead of yet another bowl of cereal!
So here is the recipe:
Ingredients (makes about 16 large cookies):
150 g (3/4 cup) soft light brown sugar
100 g (1/2 cup) golden caster sugar
1 egg
1 egg yolk
300 g (3 cups) plain (all purpose) flour
1/2 tsp bicarbonate of soda (baking soda)
1 tsp ground mixed spice
200 g (1 cup) white chocolate chips
50 g (1/3 cup) dried cranberries
45 ml (3 tbsp) Cointreau or Grand Marnier (or orange juice, for a non-alcoholic version)
Method:
Preheat the oven to 170 C (375 F) and line a tray with baking paper.
Soak the cranberries in the Cointreau, Grand Marnier or OJ for about 15 minutes, or until most of the liquid has been absorbed.
Cream together the softened butter and sugars until light and fluffy. Beat in the egg and egg yolk, followed by the flour, bicarbonate of soda and mixed spice. Finally, stir in the chocolate chips and cranberries.
Using a 1/4 cup measure (or 60 ml ice cream scoop), measure out a tray-full of cookies, leaving plenty of space between each one. I got two trays of 8 cookies each out of this quantity.
Bake for 13-17 minutes, until the tops are starting to crack and the edges are starting to brown. Leave the cookies alone on the tray for 5-10 minutes to recover from the ordeal of having been in the oven, then transfer them to a wire rack to finish cooling.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
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