Thursday 22 November 2012

Yummy Soft Food

This is a list of soft foods I like and can tolerate. I'm posting it for a lovely friend who has what is technically described as a 'buggered jaw' and a grumpy stomach, but I hope it might be relevant for some other folk too.

Disclaimer : we receive a shocking lack of nutritional teaching at medical school. This is a list of foods I can tolerate as a person with chewing/swallowing/digestion problems. Your body will probably vary. I do know that a varied diet is better nutritionally, and that when we have dietary restrictions we easily fall into ruts of safe food. I started this list to help myself eat a varied diet within my limitations.

breakfast cereal softened in milk
tofu scramble / scrambled eggs
pancakes/french toast (softened with syrup)
hash browns / potato smiles
baked beans / spaghetti hoops
garlic mushrooms
smoothies (I make thicker ones I can eat with a spoon)
porridge (I stir chocolate peanut butter through mine) - the microwave/instant varieties are better because the oats are more broken up and therefore easier to swallow/digest

I tend to make soups with less thinning liquid than other folk because my tummy prefers it that way

minestrone with tiny pasta
laksa (like thai red curry but soupier)
sweetcorn chowder
tomato and basil
butternut squash and coconut
noodle-y soup
yellow split pea
sweetcorn broth with tofu and scallions (chicken and sweetcorn soup rip off)
carrot and coriander

(okay, this is now just a list of my favourite soups...)

Main Course
mashed potato/shepherds pie
(can add in other root veg for variety/nutrition e.g. swede, carrots)
jacket potato or sweet potato with butter/hummus/baked beans/spaghetti hoops (tuna mayo also)
lentil daal/chili with rice
mushroom/squash risotto
stew and dumplings (fork soft veggies)
veggie burgers/bean burgers/veggie fingers/nut roasts (I imagine fish cakes would be similar)
stuffing (and gravy!)
avocado. with everything.
well cooked pasta (none of this al dente business) chopped up with :
- bolognaise
- pesto
- butternut squash and sage
- blended tomato and veggie sauce
- carbonara (still have to perfect tasty vegan version of this)
rice noodles with tofu and tasty sauce (e.g. sweet and sour)
tofu fried rice (vegan version of egg fried rice)
sandwiches (thin bread slices, plenty of filling = softer)
- hummus
- avocado (current food obsession)
- veggie burgers / veggie fingers
- scrambled tofu
- garlic mushrooms
- nut butter and jam / banana
- pasta sauce
- daal
- butter and jam / marmite
- (vegan) cheese and pickle - the burger slices make softer sandwiches

baby food fruit/puddings
canned pears/peaches
dip small pieces of soft fruit e.g. bananas, pears, melon, strawberries into melted chocolate
rice pudding
apple crumble/stewed fruit
cake/biscuit softened in milk
ice cream/sorbet/custard/yoghurt
marzipan/marshmallows (and meringues, one entirely un-veganisable food!)
suck-y sweets

Please add your favourites in the comments (I welcome non-vegan suggestions to help non-vegans who may be reading this - I didn't have the same eating needs pre-vegan so I can't really think of many suggestions!)

Friday 9 November 2012

Chronic Pain - What to Say

We were having some chat on twitter last night about chronic pain. People made a lot of interesting points and I'm brewing another post that uses those, but I was asked a question by @Tricia_the_doc which I thought was a good place to start : "What are the best tips you can offer docs in terms of things to do or say? (I can guess some of the don't do things!)"

It's an interesting question, because as with many things I am much better at talking about what not to do. With some general disclaimers that this is based on my experience as one person with chronic pain and that others might completely disagree, I came up with the following.

1) And this one is for both 'sides' of the conversation - it's important to recognise the barriers created by previous bad pain management.

As a patient, I recognised that I feel defensive whenever a doctor mentions my pain medication, because so many times in the past I've been told that I don't need it / I'm too young for it / I have a low pain threshold (which is a very stupid reason to deny painkillers) / I'll get addicted etc.

When doctors believe that I'm in pain I am able to relax into a conversation about pain management without worrying that the subtext of the discussion is 'You're not in pain so I'm stopping your painkillers', in the same way that I can have a calm and rational discussion about changing the dose of my asthma inhalers.

I get anxious when doctors threaten to stop my painkillers because I am in pain. The painkillers I use make the pain bearable most of the time. Without them I am in constant, unbearable pain - the kind of pain that sends you out past screaming into practical catatonia. Without meaning to be hyperbolic, threatening to stop my medication is essentially threatening me with torture. So yes, I am anxious.

I would like my doctors to recognise that it is normal for me to feel defensive and anxious about my pain management. Sometimes if I talk to a patient who I sense is becoming defensive in a similar way, I will say 'I believe that you are in pain - I'm asking these questions to get to the bottom of it, not because I'm trying to catch you out'.

2) The tricky bit of chronic pain management of course is patients who you suspect are misusing pain medication in some way - becoming addicted, selling it etc. As someone with chronic pain I am inclined to say that this is not my problem and certainly I believe in erring on the side of caution - I think that I would rather unnecessarily treat someone not in pain than not treat someone who is. However, I also understand that 'drug seeking' wastes time and resources as well as putting people's health in danger.

If a doctor were to think that I was misusing my medication I would appreciate an open conversation with them about it - expressing concern for my wellbeing, offering support, suggesting alternatives - and remembering that many people who misuse pain medication do actually have underlying chronic pain.
3) It is rare for doctors to make positive suggestions about my pain management. Far more likely (most doctors I visit) is for doctors to suggest removing elements of my treatment without asking me what my pain is like or how well controlled it is on my current plan.

If you genuinely think that I might get better results from another medication then I would definitely like to hear about it! However, because of aforementioned anxiety, it would be great for you to make clear that it is my decision and that if it does not work you will re-start my previous medication. Ditto, if you think that I could still be well maanged at a reduced dose because my condition has improved.

A specific word r.e. paracetamol - a lot of my friends on being told that they should take regular paracetamol alongside stronger meds think that this is a sign the doctor hasn't understood how bad their pain is. Make extra clear that paracetamol is actually very effective (even though it can be used for mild pain, that doesn't mean it is a weak drug) and that it enhances the stronger medications.

Non drug treatments are also useful - especially things like mindfulness practice which help people to cope with experiencing pain (the aim of chronic pain management is to manage pain, not to remove it entirely). Please make it clear if you mean this as an adjunct to drug therapy rather than a replacement. See point 1!

If you have anything to add or you have a different perspective, please feel free to share =]

Tuesday 6 November 2012

All At Once

 This is not my most succint post - more of a thought exercise than anything else. I'd be interested to read your thoughts on the subject if you'd like to comment.

Chronic illness is a funny old thing.

In my time on the wards the last few weeks I've talked to a few patients who have been diagnosed with illness or impairment less severe and less disabling than my own but who are receiving intensive, inpatient treatment whilst I am currently 'only' under the care of my GP.

It is hard in my situation not to compare my own experiences with those of the patients I interact with, and I don't believe it is inappropriate as long as it is an occassional ponder on my own time and that if it does affect my interaction with the people I come across as patients, it is in a positive way (for example to remember that I am not a good historian when I am upset and in pain, which helps me to be patient with someone in a similar situation).

Comparisons are of course difficult (especially between different conditions/symptoms) and mostly subjective, but for this train of thought exact comparisons aren't really the point. Nor is the point to downplay these folks' experiences or to suggest that their care is inappropriate, as I don't believe that it is.

The point (finally) is to reflect on the difference between acute and gradual onset of chronic illness or impairment. There are two similar topics that you will have read/heard a lot about if you've been hanging about the sick/disabled blogosphere for a while :
- invisible vs visible illness/impairment
- congenital (from birth) vs acquired illness/disability

I don't hear/read a lot about this particular topic, although it falls in to the same category of illustrating the diversity of experience within our community. It also lends itself to the same 'which situation is better?' philosophising. (Spoiler : tends to come down to 'both have pros and cons' or 'better the devil you know')

It is strange to know that if I had woken up today in this state having gone to bed yesterday perfectly healthy, I would be in hospital now - yet over the course of all of this I have only once been inpatient (impatient is another matter...). This is attributable in various parts to :
- good fortune on my part - some other folk with my conditions are much more severely affected than I and require long stretches in hospital
- medical knowledge, social support, good primary care and accumulated experience and equipment which allow me to manage things at home which I would otherwise need to be admitted for
- and, not so good, some very bad calls made by previous members of my healthcare team

I see these people whose lives have been transformed in an instant and their experience is both entirely familiar and entirely alien.

When I first used a wheelchair, it was an indescribable relief because it dramatically increased what I was able to do and where I was able to go - yet to someone who has suddenly lost the use of their legs using a wheelchair often dramatically restricts their mobility (especially at first).

I have been on regular medication since I was a child. I didn't go from nothing to 22 tablets a day overnight. I am used to the routine of ordering repeats, setting reminders, carrying meds around with me. I am used to balancing side effects with therapeutic benefit. I am used to justifying my use of pain killers to any doctor who vaguely decides I am too young for opiates.

I am used to the restricted diet, to constant pain and nausea, to needing to assert my right to adaptations. I am used to doctors touching my body and to stripping my entire existence down to a list of relevant symptoms. I am used to the paperwork, to complete strangers asking personal medical questions, to needing help with 'basic' things. I am used to putting on a public face because even people who ask how I am don't necessarily want to know.

I have learned these lessons gradually, often the hard way and by making mistakes. I have been mostly taught by other sick and disabled people, including those in my online community. I have had very little multidisciplinary input considering the combined impact of my conditions - and the care that I have received has generally been a fight to access.

I think the learning curve would have been greatly steepened in an acute situation. I think my understanding of the situation would be more medicalised at first if I had been learning how to be in this new body from healthcare professionals rather than from other sick/disabled people. I would have had physio, OT, orthotics and social work involvement from the word go (at least in theory), rather than in a haphazard way.

As for grief and acceptance I am not sure. I know that sometimes it feels easier when a lot of things change all at once and then the dust settles, you can evaluate where you're at and start to move forward. Sometimes it is easier when things happen bit by bit, giving you a chance to catch up and learn to cope with each step. Sometimes it helps to not have a 'normal' before to compare to - I have always been sick to some extent.

I see this process as a journey rather than a binary state. It is amazing in the magnitude of serious illness and disability what it is that really makes you break down. A couple of weeks ago I had a really bad day of grief because I was finding being gluten free so difficult, when in the scheme of things - even the big picture of my dietary restrictions - it's not that big a deal.

And by the way, the things I said I'm 'used to' - it's not quite as simple as that. I suppose I mean that often I can do or experience those things without thinking much about it. Thursday nights I sit down with my dosette box and dole out my pills. Strangers ask what's wrong with me and I say 'that's a very personal question that I'd rather not answer' or 'I have a problem with my joints' depending on situation. But sometimes these inconsequential things are quite unbearable. I can't stand the thought of the BP cuff inflating around my arm one more time. My everyday pain levels are suddenly just too much to cope with.

 My take home thoughts are these :
- Acute management is much better than chronic illness management as a general rule. Initial care tends to be better for something that happens 'all of a sudden', but then we all tend to end up in the same slightly leaky boat.
- Tied to this, community access to multidisciplinary support (physio, social work...) needs to be a lot better and easier.
- No matter the speed of onset, chronic illness/disability will often entail a period of adjustment and some degree of grief.
- A really positive aspect of chronic illness/disability can be to share experience/advice/support with individuals who find themselves in the same situation - especially in an 'all of a sudden' context.