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