Spoon Story

I wonder do you know the spoon story? it was written by Christine Miserandino from http://butyoudontlooksick.com/ and I find it really useful to explain the limits to my energy on a daily basis.
When I first read it I was really excited about it and sent it to lots of friends and family but was disappointed by the lack of response from soem people but others really got it.
My young daughter will often say to me-now Mum that's is too many spoons and my good friend will say- have you got any spoons today, do you want to go out?
She even sent me a lovely picture of spoons which I would like to reproduce as I lost it from my phone, think I will do this for one of my photos on my 101 list

Here's a link to the story I hope you enjoy it:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Holiday to Turkey

I am going on holiday today to Turkey to buy firniture for my the house we bought in December. I am going with my sister and am really looking forward to it.

I have scheduled some general topics to post while I am away so I hope they work OK.

Love and genmtle hugs

LInda

CFIDS Online support group -comfort food

This is the second topic of my online support group- here is what I have written on this topic

Its been very interesting to read about other peoples feelings towards food and the comfort that it gives. I too feel better when I am eating and find myself looking for, often what is considered the wrong things to eat like sweets and chocolate. There is also the issue for me of feeling that I "deserve" a treat usually chocolate or cake with tea because I am not well and it will make me feel better. Of course then you feel worse afterwards for eating it. I have to say that I am glad that I not alone in using food almost as a medicine.

I am really fed up that I have put on weight over the years that I have had fibro and tried hard to lose some and recently lost one stone but have put 9 lbs. back on because I just couldn't maintain the rules of the diet I was on, the willpower necessary and an exercise regime of any sort.

I am hoping that the better weather will encourage me to eat more sensibly, stop rewarding myself with food and try to get some exercise. I always feel better in the summer and we have had a few warm days here in England which I hope is a promise of more sunny days to come.

Check in
Have been told that I now have beginning of arthritis in my hips and am badly troubled by jaw pain. Have just started taking clonazapan a quarter of a tablet to start with and hope that this will help with muscle pain and sleep. Am looking forward to going to Turkey on Saturday to the house that we have just bought there and am also going there in the summer for six weeks which should be marvelous.
Have just started a challenge of 101 things in 1001 days-I I read about it on a moneysaving website curiously enough- which I am finding inspiring to target fun and interesting things to do.
One of my 101 things to do is to do a blog for a month which I have started about 101 things and also about living with fibro.
If it is Ok will add link here to them in case anyone interested but no matter if not as I am enjoying making them.

http://101thingsin1001days-linda.blogspot.com/
http://fibro-babe.blogspot.com/

kind regards and gentle hugs

Linda

Going to Parties and Other Ocassions

Yesterday was my Mum's 95th birthday so a party has been planned for ages for it. I went yesterday and had a really good time but just think its useful to think about how to plan foir these life events that come up and enjoy them.

I haven't been too good for a few days and have been wondering if worrying about going has contributed to this?

So I think the best idea is to look on it as a problem solving exercise you know you want to go so how best to go, get the best out of it and minimise any possible flare-up afterwards.

So plan the event:

How long will you stay? Try to decide this before hand so you know and can pace yourself, if you have a partner they can remind you when it is time to go.

Can you go earlier and rest somewhere beforehand? if not can someone else drive and you lie down in the back of the car to maximise rest.

What will you wear- I start with heels and take flats and try to go with comfort and style not always easy. Although I got the most compliments one party where I was feeling very poorly and threw on a tried and trusted outfit so maybe I have mastered effortless style.
In the day or days before you go depending on your energy levels make sure you gets lots of rest look after yourself maybe do a bit of pampering while you are relaxing so you have your nails done etc before the event.

At our family parties people usually chip in with cooking or preparing but I usually just send a donation for two reasons- its much easier if I don't have the added stress of a job to do on the day and if I can't go then no-one is waitng for the all inportant puds or sonething.

What do you want to get out of it? I just mean how best to enjoy it without wearing yourself out.
We are known as the dancing aunties at our family parties although it has just dawned on me we have now become the dancing grannies. But dancing although I love it has become much harder for me to do so I have mastered the art of dancing without moving my feet and if you can find a handy wall to lean on at the same time all the better.

Let go of other peoples expectations of you? If you always did all the cooking or were the entertainer them maybe you can't do that any more so you will need to delegate and let go of your past role in life.

I used to be the first one to dance and was asked to get up to dance last night but thats not really me any more although I did do it becuase its not so easy for me to do and I miss it badly but of course while I was dancing I was missing out on all the gossip so theres my compensation for that.

Whatever you are going to or planning to go to-- ENJOY

Its a Right Pain

I'm not sure why I keep getting an odd pain in my face which is very disconcerting. Unfortunately I find it very hard to deal with and have to stop myself from getting in a panic when it comes on.

Am worrying now in case it comes on tomorrow when I am at my Mum's 95th birthday party.
So am planning how to deal with it in case it does happen.
I am going to make sure I have the right medication with me need to go for a stronger one in the first place because if go with paracetamol can't then take co-codamol. Don't take these often becuase of side effect of constipation. Make sure have extra medication with me.
Have been looking for microwave heat pack that I made with a tube of material and rice but Ellen has promised to make me one if still can't find it by the morning. I have just remembered that they sell them in the chemisr round the corner so I can buy one if necesssary. I find heat is the best form of pain relief for this pain.
I am going to take a big scarf to wrap around me for the journey home and am going to make sure I rest before I go tomorrow and also that I have a really good rest now.
So my friends I am off to bed with more medication and an electric heat wrap and tomorrow will be better because I've planned for it to be fine and whatever happens I will cope with it.
goodnight and gentle hugs

Talking To Medics -2

Had an appointment with my doctor and as usual had my notebook ready with the points I wanted to talk about but I think I had just too many things to discuss so in the end realised that my main reason for going was not touched upon which was silly really.
So... learning all the time next time I will have less things to talk about by going more often or having telephone appointment in between, and prioritise my problems so that I at least get the main item off my chest.
To cap it all got letter today from consultant with details of new medication so will have to make new appointement anyway- oh dear.
When you have limited energy you just need to be super effecient so as not to waste any spoons.
Do you know the spoon story? Will do another post about it soon.
What it was was I meant to ask doctor to examine my hips as they are very sore these days and she had said she would send me for an xray. So that was my reason for going and of course can't have them examined over the phone- silly me.
I hope your doctor offers telephone appointments too as they are a real help when you are exhausted and there is no comfort in doctors waiting rooms.
Will have to make another appointment.

Dreaded DLA Form

I decided that today is the day to tackle this form it is 39 pages long so have broken it down to pages in my trusty notebook.
It took me some time to assemble all my paperwork together so I have:
1 current prescription forms saves writing in what meds you are taking
2 medical history document-This is my own document with family history, own medical history 3 medications tried, treatements tried etc. I try to update this and keep it on my computer but it needed updating before I could use it.
4 copies of old DLA applications- so I can see what I put before not that that means if it worked that time it will this.
5 Any Medical reports to send up the more info the better
6 Letters from people that care for you- my husband, daughter and friend
7 Guide to Disabilty Living Allowancw frim Bebefits and Work website- printed off- this is a page by page guide and is invaluable for helping complete this horror of a form.

So am ready now and have completed 13 pages- admitedly these are mostly the easiest ones- like whats your name and bank details but that is a third of the way along right.
Have had a break during this and sat in my summer house for a while with the paper, what a beautiful sunny day it has been today.
Am going to pack up now and tackle some more of it tomorrow. But am I also going to reward myself with buying some bedding plants for my garden. This form can really make you feel down as you have to talk about suffering and pain and all the symptoms you have- words I try not to use about myself too much. Am exhausted from it but it has been productive.