Saturday 30 May 2009

Wise Words- From my Reflexologist

I was having a treatment from my reflexoligist and she came up with the following analogy for fibromyalgia, I really liked it and made a note of it at the time so I am re-producing it here for you I hope you like it.

The way you feel is a bit like driving a car.
Maybe you will never go into fifth gear again or even fourth.
Sometimes you may have to leave the car in the garage.
So maybe you need to be drivng an automatic or how about calling it cruising.
When the car is in the garage you can still cherish it polish it keep it happy.
If you go into fourth or fifth gear by mistake you may need a service or some tender loving care.
But you can drive along quite happily in cruise control.

Margaret Sullivan -reflexologist

Wednesday 27 May 2009

Wise Words- Notes to Self

I keep some notes to remind me not to be too hard on other people when they appear sometimes to be insensitive. I keep them as notes on my mobile phone so I remember to have a quick look if I am a bit down or getting cross with people.

When people say "you look good/well" it is becasue they want you to be better and it is kindly mean't.
You make a lot of effort to look good so take it as a compliment.

Phillipa Jones- Arthritis Care Trainer

If I was being kind to myself what would I be doing right now? What do I really need? Don't forget tapping (Emotional Freedom Technique)

I love you but I have to take care of me so I can have energy to take care of you

Other people have wants, but you have needs

Joyce Spence- my very good friend

Every day do something just to make yourself happy you have to have fun in your life

CBT counsellor

You always had it in you, you always had the power

The Wizard of Oz

Joyce Spence- my very good friend

Sunday 24 May 2009

What I Know Now Because of Fibromyalgia

How much I am loved
It's OK to say no
There is value in looking on listening not always being in the thick of it.
There is pleasure to be has in being quiet not always being the one to entertain.
I enjoy time on my own quiet time.
Life can be good and enjoyable despite illness you can be happy.
It's OK to put yourself first.#If you want or need something you need to ask - people are not mind-readers.
I do more now because of my illness - I don't want to waste the good days.
When you go slower you notice different things to people who are rushing around- litle snails in the road, knots on trees, flowers that are slightly hidden from view- unless you are going slow.

Thursday 21 May 2009

Wise Words-Living Your Best Life

I am inspired by other peoples sayings or wise words that seem to speak to me either something I have een written down or just sometimes someone will just say something and I think aha that is so true.
So I am going to post a short series of wise words wherevever they have come from I hope you like them.

You still have a life
You've got your life
and there is no reason
why you can't have a fulfilling one.

Recovery means making adjustments so that your life's journey continues to be a rich life journey but you have taken account of whatever the difficulties are that you are experiencing.

Whatever the problem you recognise what help and support you need in order to play a full part in your own life.
Sheila Hollins (Abigail Witchalls mother)

Still silent body
But within my spirit sings
Dancing in love light

Abigail Witchalls

Abigail Witchalls was stabbed in the neck and was left paralysed she composed this poem by blinking. She can now speak after being paralysed for four years.

I find her poem and the wise words of her mother very inspiring and aim to live my own life playing as full a part in it as I can

gentle hugs

Monday 18 May 2009

CFIDS May Topic- Sleeping zzzzzzzzz

What strategies do you use to help you to sleep at night. Here is my response to this months topic.
I love to sleep and used to be able to sleep so well, I miss it badly.
I had to sleep recently with my sister and she said that I went from asleep to awake instantly as if I wasn't really asleep at all. I do think that solving the sleep deprivation problem we all have would go a long way to making all our other symptoms much better.
apparently if you deliberately stop people going into a deep sleep after a few nights they will get all the symptoms of fibromyalgia.

I used to use valerian to help me to sleep and found it very effective although I do think it lost efficacy over time. Since I have started taking cymbalta my consultant has said that I can no longer use it.

I understand that Dr Jacob Teitlebaum has a combination sleep remedy which looks interesting and I would certainly try it if I wasn't taking cymbalta.

I have recently started taking clonazapam only a quarter at night but can't say if it helping or not as I don't think I have had a normal week for some time to make a proper judgement- I did try to up this to half a tablet but found that I could not get up until about 2pm from extreme fatigue which is not really getting much quality of life.

On a COPE pain management course we talked about good sleep hygeine which involved looking after your comfort- I have a really good mattress- a Dorlux Marquis king size which has a built in topper- and use lots of pilows including a body pillow. I decided against a Tempur mattress because I had heard that can make you a bit sweaty and I get hot enough at night.

I use a heat pad for pain releif and to keep me warm and a Chillow pillow in the summer if I am hot. I also use a Remedi pain releiving device for half to one hour while in bed it helps with pain releif and relaxation.

My bedtime routine is to go to bed between nine and ten in the evening and will probably watch some light television or play a game on my ipod like bejewelled and of course sorry to go on about it but if I am not sleeping or to wind down I will listen to a podcast or a talking book. My favourite at the moment is a free podcast by alistair McCall- Smith called Corduroy Mansions which I am sure is not meant to be so boring but it can send me off to sleep- I have not managed to get beyong chapter 12 yet!!

I also have a CD called peaceful sleep by Jan Sadler on my ipod as well as The Soul of Healing Meditations by Deepak Chopra and various free podcasts of relaxation and meditation.

So I seem to have an army of strategies but of course unfortunately still have many nights when I don't sleep beasue of pain and discomfort or wake up with bad dreams and pain. Some nights I just get up and abandon all attempts to sleep go and have a cup of tea watch a bit of TV on my own and go back to bed a few hours later.

The most annoying aspect is when you have slept but wake up feeling as if you haven't slept a wink. I have no answer for this but just take eaxh day as it comes and if it has to be a duvet day then so be it.

The most annoying aspect is

Friday 15 May 2009

Going to Turkey

I am going to Turkey today and am really looking forward to the rest I am hoping to get as well as the sea air, warmth of the sun and less stressful life I am hoping to have there.

I will be away for six weeks and was hoping to be able to take the laptop with me but in case that doesn't happen I am hoping tp schedule some posts to happen magically while I am away.

If I can get near a computer will also post some up to date posts of how I am coping with living in another country, on my own for a short while and any other topics that crop up.

Wednesday 13 May 2009

Dreaded DLA Form Part 3

Well it is finally done its in the post and whatever happens now happens. I know I have sent it off very late but I am hoping with all the supporting evidence I have sent it will be sucessful without them needing more evidence from my health professionals.

Have sent with it prescription form, letters from DH, consultants, ill health retirement letters, statement from myself as well as the 39 page form what more could they want?

I really have a mental block about doing this form and just put it off and put it off until it is like a weight hanging over me. I think it is becasue the outcome is so important if I lose it it means - no car, no disabled cab, no access to taxis when I can't drive but if that does happen then we will handle it. Should use CBT to not catastrophise about outcomes so must STOP worrying about it now.

It is such a lovely release that it is done phew

Monday 11 May 2009

Flare up -it was expected

I knew it would happen and after spending a week sitting at the hospital trying to offer support it all caught up with me last Friday and I had no choice but to go to bed and stay there.

Even though I knew it would happen it was very hard to cope with the feelings of being useless because of this damn illness but you just have to get yourself over that or it will only bring you down more.

The pain and tiredness have been intense but luckily my DH has noticed and made sure I rested well he ordered me home and to bed. He has been bringing me breakfast in bed complete with tablets and coming home lunchtime to make me lunch if he can.

On top of it all by trying to run into the hospital I seem to now also have plantar fasciaitus which is very painful and has meant I have had to use a stick for the last few days which i find quite cumbersome and heavy to use. The only treatment is the medication I am already taking so am just resting being kind to myself. I think I did a good job while I could and am trying to help out as much as I can but not so much hands on. Just allowing other people who have more energy to help instead of me.

Taking care of myself first now like on an aeroplane you can't look after others until you look after yourself.

Be gentle to yourseves if you need it love and gentle hugs