Pedometer

It has been recommended by my CFIDS group to use a pedometer to help with pacing.

It seems a little strange at first but what it means is to use it to limit activity in any given day so as not to go above 5000 steps.

It seems to me like a good idea to have a limit placed to help keep within your energy envelope so have got one but haven't been able to set it up properly yet as it said that I had done 10000 steps when as I hadn't gone out anywhere was very unlikely.

Will calibrate it properly and let you know how I get on

CFIDS August topic- my response

I think I did have a major problem with this when I was younger always wanting to be the best, to do everything well and perfectly.

I believe it was mostly from coming from such a huge family I was always looking for ways to stand out to get noticed and this carried on into my work life and own family life wanting to be praised- usually more than once for my efforts.

Now the difficulty is doing much at all that can get noticed, I have had counselling and am aware of my need that I honestly think no-one can in reality fill except me.

So I am no longer working so that stressor has now gone and I set my own targets and am happy if I can fulfill them in any way and do not stress if I don't. That is I set targets that I can acheive and then I am happy.

My husband is aware of my need for praise and if he ever sends me a text saying well done like he did when I bought and furnished our house in Turkey- I keep it so that I get look at it more than once and get my praise fix that way.

love and hugs

Linda

CFIDS Monthly topic- Resting at Work

I am not working now but when I was I had a camping lounger that I used to rest at lunchtime and plugged in my trusty ipod to listen to meditation or sometimes EFT for resting and energy.Unfortunately I was made to take this home by a new manager.I had however also had an ergonomic assessment done of my desk and workplace and had a really comfy chair that gave support to my neck and footstools to minimize pain in legs.Also we should remember that there are laws in place - I know not always adhered to- that adjustments should be made to accommodate disabilities at work.It took me a long time to admit that FM is a disability and ask for help for rest times during the day, late starts or whatever will help you.I have just been to a restaurant with my family and take a tempur cushion with me to minimize discomfort- if you can do that you can stay longer I think.If I am not am home and need a rest I am no longer afraid to say I need to rest for a while am off for a nap lie down see you later.not posted for a while as have been at our house in Turkey I am so proud of myself for buying this without my husband and he is delighted with it.I have also told anyone that wants to visit they are all welcome but I am not going to look after anyone. I also have made a self contained area in this house with own bathroom sitting room and food available so I can really rest if I need to.My health was much improved in Turkey less stress, swimming each day and warm sunshinekind regardsLinda

More Wise words

Whenever I see words that give me inspiration I write them down and keep them in a poretty notebook- well they are on here now, I hope you enjoy this selection.

Being a chronic babe means recognising your reality, accepting the limitations you can't change and being a rock star the rest of the time.

Chronic Babe

The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles. But to live in the present moment wisely and earnestly--and happily- my addition

The purpose of life is to love and be loved.

Budhaa

Wisdom tells me I am nothing, Love tells me I am everything
Between the two, My life flows

A great Indian Master

Welcome to Holland
You thought you were going to Austria with mountains and skiing but you ended up in Holland which is flat and quiet. Holland can be just as nice when you get used to it.
www.cfidsselfhelp.org/library/welcome-holland

CFIDS selfhelp group

Laugh think cry, That's a full day
Where you started, Where you are
Where you are going.
Never give up, never give up
Enjoy your life, your family.
Be enthuisiastic
Keep dreams alive despite problems.
Work hard to make your dreams a reality
Thank god for the day for the moment.

Morning Coach podcast

CFIDS onlibe support topic- fibrofog

Our topic for this month is fibrofog or cognitive disfunction. Although I have also seen it recently called being thought disordered.

I used to be very nuch bothered by this, that is to say I still get the brainfog but try not to get so stressed any more about it.
In the past I have found myself struck completely dumb when I had a meeting with a recalcitrant consultant and coulod not speak at all as he was so imtimidating. The end result was that he sent me for the test that I was hoping for so no harm done except to increase my awareness of the problems it can cause. I now take to any consultation or meeting notes about my medical history including family history, any medication I am taking, last weeks diary as well as the questions I want to be answered. If I am feeling particularly vulnerable I would take someone else with me.

When I was having many stressful meetings regarding my work complaint I used to have written in my notebook the following: I need a break
I need time to answer
Stop and wait please for me to order my thoughts
I would then point to the relevant statement for my union rep to say. It worked well for me at te time to feel that I had some control over the situation.
I have now become the notebook queen and always carry a pretty notebook to help me keep track of what Iam doing my goals and targets. I also use my mobile phone as a notebook and either create a note to myself, use the calender to set reminders for myself or make a text in draft form for something I have to remember.
Despite this I have still missed a hydrotherapy apointment this week and rang to apologise on Wednesday am for missing the apponitment that morning but it was actually Tuesday morning.
I also find it very worrying when people tell me I have said things without realising it such as saying in a shop that I had a "sexual problem" when I mean't to say I had a medical problem to try to explain my getting mixed up. So although it is funny now it is worrying and makes me feel I lack control. Will end now as worrying am getting too long thanks
Here is an article written by Bruce Campbell about this subject:
http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems

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

CFIDS Online Support Group-Loneliness

I am including the following transcript of my email response for my online support group with CFIDS. http://www.cfidsselfhelp.org/

We have a topic each month some suggested by members and each person can post about how it affects them and what they do that helps.

This has been such an invaluable support to me over the last few years knowing there are people around that understand that you can reach out to you can ask a question, email an individual if you want and gain insights into how other people cope. First I did an online course where I was taught coping strategies and target setting and then I became part of this alumni group ( I have no idea how you say alumni but anyway thats the group I'm in)

So heres my post:
Hi everyone and welcome to our new members
। I think the worse bit of loneliness is that of not knowing people around that you can talk to about fibro but this group makes a big diffference to feelings of isolation.
When I have had to have yet another day in bed and no one around during the day then I do get a bit low but Itry to connect with people either by phone text or internet.

Thankfully my husband bought a laptop for us to use recently which is wonderful for keeping in touch with people online chatting on MSN or emailing from my bed.
I also like to try and write some letters with snail mail as its lovely to post and then receive letters and cards in the post.
kind regards Linda