Friday, December 30, 2011

New Year's Resolutions

1) Get ill less often
A tricky one this as it is apparently beyond my control.  This year I've been struck down with severe pain from endometriosis at least twelve times.  On top of that I've had six colds - viral infections.  I really want less colds in the next year.  Hey ho.  Still alive though! Acupuncture is not apparently any assistance - since my last dose of that only about four weeks ago had two colds!

2) Practise meditation with more consistency
I was doing this twice daily at one point - about a year ago - but had problems keeping this up.  If I could do yoga again that would be a good start.

3) Carry on with my sock strike
In our house it is my role to be in charge of washing, or, as hubby calls it, laundry.  (What is that - a class difference?  Regional differences?  Is laundry more specific?).  I've calculated that sorting socks - of which the man is the main wearer - takes at least ten minutes a week.  Time that is better spent in SO many ways.  Like writing my PhD for example.  Like writing my blog.  Like ringing friends and relatives.  I started my sock strike today - no sorting for him.  Just putting in the drawer.  Wonder if he'll even notice?  Is a strike a strike if you don't announce it and it makes no perceivable difference?

4) Carry on enjoying the PhD
Shouldn't be too hard this.  I'm loving it.  Loving the reading, writing, debating.  There's nothing about it I don't like - and I get paid and am better off than before I started it!

5) Be a better friend
My main aim is to start remembering friends' children's birthdays (and possibly their wedding anniversaries).  Have already started on this crusade as have had longer than usual off for Christmas and put them in my iPhone.

Monday, December 19, 2011

Top ten tips for dealing with Endometriosis

1) Pain Relief Medication
If you are in severe pain with endo. then you need to emphasise this to your GP. Paracetamol is actually a very good painkiller - with few side effects, but because of its effect on the kidney you cannot take more than 2 every four hours. This has to be strictly followed - with no more than 8 in 24 hours. Because it's fine with the stomach you can take it on an empty stomach. Your GP has probably prescribed mefenamic acid if it's severe 'period' pain which should only be taken after food - as it irritates the stomach. These two weren't working on their own for my endometriosis pain, so my GP prescribed tramadol, as I understand a member of the 'opiate' family so habit forming, but I take two of these when in severe pain. I went back again after three years of still severe pain and got prescribed 'MST' which is a form of morphine, which they are very reluctant to prescribe as it is addictive, but I find this with the other three manages to just about enable me to go to work for example. I find that even if I am still in discomfort, the nausea and vomitting does lessen with this combination. Every day of pain I write down what time I took the medication and what dose - so I remember what time I can take the next lot (they normally say every four hours).

2) Attend the 'Expert Patient Programme' (or another self management course)
I can't use enough superlatives to describe this course! It is life changing, phenomenol and incredible. It's only a six week course - a morning a week - and the best course you will ever do! I think it should be compulsory for every adult! You learn a huge amount of tips and skills to deal with chronic conditions and their related symptoms - pain, fatigue, nausea, sleep loss, anger and frustration. It's taught by people with chronic conditions themselves who are an inspiration. So inspired was I that I then became a tutor myself and taught a number of courses - very rewarding on so many levels.

3) Emphasise symptoms and issues with your GP
Because this is a condition that is largely invisible we are reliant on ourselves to communicate the pain,misery and suffering this causes. We only get 10 minutes in our appointments so I write down my four or five points or questions and tick them off when I am in there. If you don't get through them all then ring them - discuss on the phone or make another appointment. We are important and we need to be assertive!

4) Look into alternative therapies
Even though they may not help with the problem itself, alternative therapies may help symtoms and lessen side effects of medication. I have found all of the following useful (in order of usefulness): acupuncture, acpressure, meditation, self hynosis, aromatherapy, massage, shiatsu, the Alexander Technique, exercise (when I'm well enough), yoga, relaxation, deep breathing.

5) FAT
Fifteen amazing things - start counting your blessings every day - write them down. Look at them over a month and you will be amazed as how diverse and different they are. And some things you don't appreciate enough. And people. I love writing people thank you cards when they've done something for me. There is the website 3bt - 3 beautiful things - too for inspiration.

6) Write a 'Wellness Recovery Action Plan' a WRAP
This is essentially a list you can give to your loved ones and GP of the things you do for yourself and what they can do for you when you have an 'episode' or bout of bad symptoms. (See 7-10 for ideas).  Once written you can put your WRAP in a 'rainy day box'. It can be quite nice working with friends and family with an old shoe box - and getting little things to put in it that we can get out on a 'duvet' day. Again very cheap/worhtless stuff - but sentimental, uplifting and valuable to us. So for me: postcards from friends, flower catalogues, photographs, jewellery, scented things like candles, lip salve, make up, little books 'The little book of calm'. With your WRAP kept in it so everyone knows where to find your list and what to put in the DVD/CD player. There might be music/playlist that you find particularly relaxing or good for pain or a mediation/pain CD you can download. Unfortanately there is no cure for endometriosis and it's going to be with most of us for at least twenty years so we have to find ways of managing it - and not let it dictate to us!  

  7) Hot water bottle/bath
Warmth on the area can help you feel better, and treating yourself to a bath with scented candles and your favourite bubble bath might help.

8) Free Treats for yourself
There are some things that cost us nothing that we can do for ourselves on a bad day - a hand massage with favourite hand cream, reading a favourite poem or uplifting quotation. Looking at old photos of happy times. Watch your favourite uplifting DVD, TV programme. Spray your favourite perfume on a silky scarf and stroke it. Stroke your pets: Get in the 'Animal Zone'.

9) Sleep or nap
The best healer - if you can 


10) Phone friends and relatives

Sunday, December 18, 2011

Managing Pain

Managing severe pain is unfortunately a feature of my life. It has been for five years. I was listening to Jeremy Vine on Radio Two the other day and he said that he wrote in his diary the difficult stuff - as well as the good news. I thought I won't be publishing this on the web for now, but I have read it again and a couple of other blogs by other people and thought that it could help. Life is not a picnic. Or if it is, it is a picnic where it sometimes snows, rains, hails, mostly dull, a small amount of sun and the occassional blue moon. Today I have taken MST (morphine) at 6.30am, I took paracetamol and mefenamic acid about an hour ago and I've just taken some tramadol. That is a serious amount of pain relief. Yet still I am sitting here in discomfort, reluctant to get dressed, have a shower or do anything at all. You can't concentrate. You can't sleep, you can't do anything. All you can think is that the pain has to go. Without the medication I vomit and it is completely intolerable. At least I can type this now I have taken pain relief. Luckily for me, this pain has been diagnosed. It is endometriosis. Gynocological lesions. I have tried many, many things - in addition to the traditional Western pain relief medication. I've tried acupuncture, aromatherapy, massage, shiatsu, the Alexander Technique, surgery, acupressure, exercise, yoga, meditation, talking about it, Chinese herbal medicine, chewing gum, hypnotherapy, self-hypnosis and hot water bottle. Yet each time it's back to the drugs. And the experts tell me I have to wait until pregnancy, the menopause or a hysterectomy for the pain to go. With pregnancy it will be a temporary relief. Perhaps that's the worse thing: my hormones or 'cycle' is such a mess that this pain is just totally unpredictable. It's happening every two weeks at the moment. Impossible. It is this unpreditability that is most disabling. You can't plan. When I am in pain I just have to put the brakes on, postpone, cancel, hold off, delay. There is not much point in doing anything pleasant as I just can't appreciate it. I'm just thinking 'What time was the last time I took the painkillers?' Then 'Is it too early to take some more now?'. People who haven't experienced chronic pain - even some who have don't seem to understand. I haven't got a broken leg. Blood isn't pouring out of my neck. 'Just do something to take your mind off it' they say. 'You'll feel better once you get to work'. Funnilly enough I feel worse with those two tips.

Friday, December 16, 2011

Plans for retirement

When I have finished my PhD - and sorted out dementia - I have some ideas I wouldn't mind writing:
Does Success breed Success? Why we must criticise the status quo
And histories of:
Santa Claus
The internet
Women on the internet
Economic growth
A Sense of Humour

Saturday, July 23, 2011

Is this the best cafe in the world? A five star review of Sunshine Bakery, Leeds

It's the normal story, a friend recommends somewhere by word of mouth, but they've recommended somewhere else before, like something with a good review on Tripadvisor, you do the same, it's absolutely rubbish and then you lose their trust. This had happened with this friend, but I had been to the Sunshine Bakery in Chapel Allerton, Leeds once before to have cupcakes and tea (officially the best in the country), and went away definitely impressed. So, this friend now recommends the same place to me, I hadn't realised they did mains/were like a restaurant, but they are, apparently only open Tuesday to Friday in the evenings and it's bring your own. I want to cut a long story short and say this place is flipping brilliant, but I really must go into detail.

First of all, it's tiny. It only seats around ten people, so Lord alone knows how they manage to make a living, but God willing, they must, because they have to, otherwise there is no hope in the world. Secondly, many men are put off because in a word it's camp. Camp as Christmas. There's real doilies everywhere, there's advertisements for birthing-hypnotherapy, there's advertisement for rollerblading. Everywhere is cupcake glory-tastic. The tea sets are a mish-mash of vintage and gold edged best china which is a real pleasure, served with proper teapots as one would expect in a decent Yorkshire cafe. Except this is no ordinary cafe. No. Service is a little slow, but there is a good excuse for this in that every man, woman and child is entering the place to buy their weekly supplies of pastries, cupcakes, rolls and bread. So we'd booked and were immediately shown to our table, which was the only table for four in there (only three other tables for two). We drank our tea soaking up the atmosphere which was a perfect day for a camp, delectable cafe in the Chelsea of Leeds that is Chapel A. I ordered the soup as a starter - roast carrot cumin and tomato broth. Husband had apple and pork sausage roll. The soup was divine - spicy yet delicate and utterly scrumptious, you could taste how it had been roasted, with the richness delightfully contrasting with the sweet carrot. And the sausage roll. Wow! Pastry unbeatable and again the two contrasting tastes of the sweet apple and slightly salty pork making it a gorgeous sausage roll. And the piccalilli? Well, delicate, home-made and crunchy I thought this too to be one of the best ever, husband thought it needed more mustard, but I'm not a mustard fan in general, it's a bit too overpowering so I thought it was just right.

After this great experience for starters, I persuaded husband after I had started my main to also have a main - the hamhock pie and mash - which he did and polished off. My main was I think the best salad ever. It was advertised as 'Superfood salad with green beans, hummus and couscous' but it had so much more than that. The hummus was amazing, just the right spices and again so delicate with the tastes of the olive oil and chickpeas coming through the mild eastern tang. The ham hock pie was also great, but I think this salad that I ate had star quality. Just so much, so beautifully presented and such an oasis in the desolation that is quality-salads-available-in-Leeds.

Then to finish, as we were so full, we shared a cupcake. Not just any old cupcake. The nation's best. This particular one was a mango, chocolate and doughnut cupcake. A tiny, spherical doughnut on top of the chocolate and mango cream/icing. We tucked in only to discover to our delight that the doughnut had been filled with jam! And no warning. What a treat.

And the bill, for all this including two coffees, came to : Wait for it £19. Yes Nineteen pounds sterling. Unbelievable. The best cafe in the world.

Friday, July 15, 2011

PhD in dementia, ageing and social relationships

I found out on Saturday I had got funding for a PhD in dementia, ageing and social relationships. Now the hard work begins...

Sunday, July 03, 2011

P's barbecue marinade

2 tablespoons of oil
2 tablespoons sherry
2 tablespoons soy sauce
2 garlic cloves

For heat - add chilli/ginger

For chinese style - add 5 spice

Friday, June 10, 2011

Wellcome exhibition on the history of dirt

I'm applying for PhD funding. I hadn't missed all the deadlines and discovered more the more I applied. Anyway had an interview on Wednesday at Imperial - didn't get it, but hey-ho there's another interview next week - Yay!

After the interview me and T - an old friend of Mum's who is now a friend of mine too - went to the Wellcome Museum on the Euston Road and went to this great exhibition. Sometimes, and this is one of those times, artistic and historic museum collections leave an imprint on one's mind. This exhibition started in the seventeenth century with the invention of the microscope in Holland. That fact was one of my few criticisms of the exhibition actually - the fact that it started as late as the seventeenth century. Why not with the Egyptians? Or the Greeks? Or the Romans? Or the Old Testament? They did have a quote which mentioned the word clean from the Old Testament but nothing on the etymology of the words 'clean' or 'dirty', that must surely be very old words indeed!

Then it turned out that T had worked at one of the exhibits - The Pioneer Health Centre in Peckham. We watched this amazing half hour promotional film of the Centre from the British Film Library I think. People smoking in doctor's surgeries. Women being told they needed major operations in front of ten other people. People being watched, surveyed without their knowledge! It was incredible from the point of view of how health research has changed (for the better) but terrible from the point of view of how health resources have diminished - the amazing place (with two swimming pools) was sold off for flats in 1990. T worked in it just before then when it was an educational establishment.

Then there was the original map of how John Snow discovered the source of a cholera outbreak in 1854 - which was amazing to see!

There was other great stuff too - a copy of the Indian constitution from the 1950s - which tried to stop discrimination against the 'unclean' lowest Hindu caste. And some bricks made of human faeces and another film about the difficulties women have using and finding public toilets in India. And at the end of an exhibition a photographic exhibition of a landfill site in New York which is being converted into a national park.

Great stuff dirt!