Tuesday, 27 March 2012

Being kind to myself

I have been feeling sad since I got home from hospital at the end of last week.

Instead of feeling grateful for the delicious soups, smoothies and ice lollies I can eat, I have grieved for the things that I can't eat. I stood in front of the sandwich counter at my local shop yesterday and sobbed about not being able to eat the cheese and pickle that I craved.

Instead of feeling grateful for my big, comfortable bed and fluffy pillows (and the wonderful husband and cat that share the bed with me) I resent my 'snuggly prison' and dwell on the places I would rather be. I think of the exhibitions I'm not visiting, the full-time job I'm not doing, the friends I'm not seeing.

My hair is falling out in clumps and the little that I have left is dry and frizzy. My nails are cracked and brittle, flaking and ridged. None of my clothes fit because I have lost so much weight in the last couple of months. Even the beautiful lingerie that I wear to feel secretly sexy under my comfortable, disability-friendly clothes no longer fits properly. I feel sad to be losing the curves that have defined my body shape for so many years. 

Deep down, I know that this isn't a helpful attitude, but how to change things for the better?

First of all, I have decided to take some time to look after myself. I don't know why I am so much harder on myself than I would be if it were one of my friends in this situation, but I am. That has to change - charity begins at home, right?

Where do I start?

1. Take a long, hot bath
2. Paint my nails
3. Smother myself in my favourite body lotion
4. Put on my prettiest pyjamas
5. Play some feelgood music

That done, I'm ready to adjust my attitude.

I feel sad because I can't eat the things that I want to eat. I can't change that, but I can decide to appreciate the liquid diet that I have. So many people with the same condition as me are not able to eat at all.

I feel sad because I am stuck at home and isolated. So, I need to invite some friends round! A friend who lives nearby dropped in today just on the offchance that I was home and free. It made my day. It wasn't an issue that I couldn't eat, or that I couldn't do much more than sit. We chatted and laughed, talked about books and politics and husbands, listened to music and planted seeds. My friend went home after a couple of hours, leaving me feeling more uplifted than I have felt in weeks.

It's very easy to become isolated when even getting dressed is a chore, but I'm beginning to realise that my soul craves company.

So, my first new resolution is to make sure than I see someone other than my husband at least once a week. I'm not going to beat myself up if I don't look perfect with freshly-washed hair and a well put-together outfit, or if we don't do anything more than watch a film together or even just sit in the garden with the cat and the newspapers.

My second resolution is to wear lipstick At All Times. I love lipstick. It makes me feel confident. I talk a lot about my Brave Face. This is the face that I present to the world, that can deal with the medical world and all its pessimism. Of course it slips occasionally, and I'm not saying that it's not ok to cry sometimes, but lipstick helps the Brave Face to stay in place when I need it.

Thirdly, and finally, I am going to ask for help when I need it. I love having the opportunity to help others, so why do I find it so hard to admit that I can't get through this alone? 

1. Spend time with friends
2. Wear lipstick
3. Ask for help


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!

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

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.


Action Plans

Simple definitions:

Acute illness:
  • Rapid onset
  • Severe symptoms
  • Short course
Chronic illness:
  • Of long duration
  • (often developing slowly or insidiously)
  • Variable severity
Seeing acute and chronic illness separated and delineated makes them seem clearly distinct from one another.

However, in real life, things are often not so simple. Let's take asthma as an example:

I have been diagnosed with asthma since 1988. That is a long time. I would feel comfortable saying that I have chronic asthma. I take lots of different medications to treat my asthma, including daily high-dose oral steroids (Prednisolone). I nebulise medications every day and get daily symptoms of asthma. Again, this is easy. I have severe chronic asthma.

So what about when I have a flare-up of asthma. Sometimes this comes on subtly, making each breath shorter and more difficult over a period of hours or days; sometimes it happens in minutes. This is clearly an acute reaction (especially the rapid reaction, which is often a response to some allergen or other). The acute reaction is easy: I am having an acute flare on a background of chronic asthma. It's less easy to spot the acute exacerbation when it happens less quickly, and it can be very difficult to know where to draw the line between these situations:
  1. I can manage this situation at home by increasing my normal medications
  2. I need to speak to my GP or asthma nurse about extra treatment to keep me at home (e.g. extra steroids or antibiotics)
  3. I need treatment in hospital
The time to decide which situations fit into each of the above treatment plans is NOT when you are having an acute flare. Hypoxia does not help good decision making. For me personally, the desire to stay at home becomes overwhelmingly strong when I'm not well. Hospital, with the undignified gown, endless questions, needle-sticks and bright lights, is not nearly as appealing as my big, soft bed at home.

The best solution to this is to get together with your GP (or consultant, or specialist nurse) and agree a plan. For asthma, you might use peak flow measurement as a guide; for diabetes it might be blood sugar measurements; for gastroparesis, it might be body weight in combination with certain symptoms.

My asthma plan:
  • Peak flow more than 80% of normal: Carry on as normal
  • Peak flow between 50% and 80%: Increase oral and inhaled steroids, use nebuliser as often as four-hourly if necessary; contact GP
  • Peak flow less than 50%: Go to hospital. Go straight to hospital. Do not pass Go. Do not collect £200.
There are other signs that fit into this, that indicate clear deterioration: waking at night more often than usual with coughing/wheezing, inability to talk in complete sentences without needing to take a breath, pulse rate more than 120 per minute (this is a bit iffy, because I have autonomic dysfunction, which messes with my heart rate), shortness of breath at rest, needing to use the nebuliser more often than every three hours. 

Having these signs and symptoms written down in black and white means that the pressure of making a decision is lighter. Without such a plan, I would tend to continue to try all the drugs available to me at home, and wait, and wait, and wait.

I don't want to make a fuss. I don't want them to think that I'm overreacting. I have stuff to do. I don't want to be admitted to the hospital. I'll just try one more nebuliser...

And wait...

Until it's nearly too late, and I end up in the Intensive Care Unit on a ventilator.

Because I didn't want to make a fuss.

I have a chronic illness, which means that I live with daily, constant symptoms, and it can be very easy to become blase about them, even when they become quite severe, as in the case of an acute asthma attack. Having cut-off points agreed in advance with your specialists (GP, consultant, specialist nurses), written down and reviewed regularly, mean that you don't have to make a decision. I'm not making a fuss, I'm just following my action plan.

Action plans save lives.