Hospital Appointment TMJ

Had a hospital appointment yesterday for the pain in my jaw at St Helier.
Had an xray of my face and then saw consultant. Told not much they can do eat soft food, no chewing, no singing, no eating apples, try to stop jaws clicking and see if have any habit like grinding teeth or clenching jaw. Since she said that have become aware of clenching my jaw a lot but wasn't aware of it before. Have to heat up jaw each night with heat pack whether it is painful or not. It is more painful now because of all the manipulation. also have to go to dentist to sort out sharp tooth as nurse was concerned it could cause tongue problems.
Have fear of dentist but have made an appointment for January.

Another thing that they can't seem to do much about it is enough to make you get vety fed up but am trying hard not to let it happen and to stay up.

Feeling low after hospital visit

I felt very low after this last hospital appointment as felt was basically told you have tried everything and there is nothing left to try. Had a big bout of crying when I got home as felt totally hopeless which is not how I usually feel. Was very tired from the journey to the hospital on the tube and felt that it was a waste of time. I try hard to go for acceptance with hope for the future, but have had such a low few weeks spent mostly in bed that had a hard time keeping myself up.

Within a few days had talked myself round to feeling better as
a) need to keep in touch with hospital for when something new does come along and also for support for DLA if nothing else.

b)Will explore trying to go to private clinic in January if Benenden will pay for it.
c)Went out with some friends for evening, didn't feel like going but felt better when I went as they are very cheery people- so thanks Diane, Phillipa, Sarah,Lisa and Fiona.
d) am no worse off than before I went, am always worse in winter and it will pass soon enough and I will feel better.

Medical Appointment

Have got an appointment tomorrow at Guys to see Dr Aslam she is Professor Davies Registrar. I have seen her once before in March and like others who go to the support group at Guys my main complaint is the length of time between one appointment and another.

Here are my notes I am taking to regarding the things I want to discuss with her but it is rather lengthy so hope will be able to say it all. I always make notes before I go for any appointment in case I get an attack of fibro fog and can't speak.

Am giving ansers as given as well as have now seen doc but not docotr Aslam a new registrar Sarah Medley
Q. Clonazepan Last saw you in March and was given clonazepan quarter then half, unable to tolerate half went back to quarter but didn't do much so stopped it. Then am left till now before I see you again

A Could ask my doctor to write to say this and they could suggest something else.

Q Pain Clinic am not willing to go to this at St Thomas's have been to many courses and can't see what I would achieve having had bad experience with Dr Duncan,
A Dr Medley had no knowledge of this complaint iof mine but agreed it would bot be suitable for me.
Q fibro pain clinic Is there going ot be a dedicated fibro pain course? none planned at present but planting a seed.

Q plantar fasciitus and TMJ Have had plantar fasciitus since April, had physio and acupuncture which had bad reaction to leading to TMJ pain. Not sleeping, pain not controlled and fatigued. Taking paracetemol, acupan, st johns wort, valerian. What else can you offer?
A Have tried most things available try going back to cymbalta to see if it helps with sleep.

Q vitamin D can I try vitamin D for pain relief or B12?
A have to have blood test and then it can be given if deficient. Given blood test at hospital wait 3 weeks for result.

Q NHS and Private as it is so long between appointments can you go to Prof Davies private clinic as well in between appointments (am hoping Benenden will pay for this)?
A Yes you can do whatever you like to help alleviate your symptoms.

Q DLA have received DLA but only for two years although was given it for three before. Is it possible to get a letter in support of claim to see if can get it for longer without having to refill form?
A Yes will send you a letter to whom it may concern. Have recieved this letter aand will forward it to #DLA to see if can get it extended or no.

Apology

I'm so sorry that I have not posted for a while. I know how maddening it can be if you follow a blog and then you don't get any updates for a while. Unfortunately just haven't really been up to it. Have been able to keep up the 101 blog because it doesn't need as much thought as this one, its more like a diary of what I am doing but will try to blog on this one much more now.

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- Unhealthy Perfectionism

There is a lot of pressure in our society to excel. It can start withgetting top grades in school or even earlier with parental expectations thattheir baby start walking and talking before others the same age. Soon weprogram ourselves that we should always do "the very best job we can." In this pursuit of perfection, we can wind up putting achievement before ourown welfare. Athletes are lauded for continuing in a competition even wheninjured, and employees are encouraged to do more and work longer hours.When you really stop to think about it, "just do your best" is a draconianmandate.Our topic this month will be recognizing and combating perfectionism. Onereason many of us fell into a push/crash cycle was because we let the"shoulds" drive us. We pushed ourselves unmercifully to accomplish tasks aswe thought they should be done, putting the task ahead of our own health.

So our topic this month is recognizing our unhealthy perfectionism when we are tempted to push ourselves too hard, and discussing alternate strategies.

New Symptoms -go to doctor

I think I wished it on myself but with all this talk about swine flu I stupidly said I never get colds and I never get headaches. Famous last words.

Last week I started sneezing had a bit of a tickle but no temperature so not swine flu. Not helped by my friend following me round the shop saying swine flu every time I sneezed- I was sure someone was going to bash me for daring to come out with sneezing.

Have become obseessed with washing my hands each time I blow my nose not always convenient and then found myself with a headache for the last few days and a hoorible taste smell up my nose and in my mouth. Was convinced I had bad breath but was assured that I didn't.

Decided to go to doctor as maybe you are someone that gets headaches with fibro - in which case - I am sorry that you do- but I don't so it is an unusual symptom for me.

Felt a bit of a fraud in surgery with just a headache and a bad smell but was told that I had sinusitis so was very glad that I went.

It's just a lesson to learn to always go with new symptoms as now I will get some relief and wished I had gone earlier.

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

Hello and sorry

I don't know why but have just got out of the habit of posting since I got back from Turkey. I guess it was having the six week break and unfortunately since coming back have not been great but I will get back into the habit of posting again I promise.

Will post again tomorrow with hopefully some more interesting topics

Becoming More Decisive

I think I have become much more decisive since having fibromyalgia.
I used to worry a lot about making the right decision and would be awake at night worrying about anything and everything but it has taken a while to get to this place where I try not to worry about things I can nothing about.

If something is fairly unimportant I make the decision and move on- like what to eat in a restaurant or to have for dinner- its a waste of energy for me and you. although I draw the line at swapping my meal with my husband if I didn't like it like my mother -in-law did long ago when presented with a whole fish. She just simply gave it to her husband and enjoyed his lamb chops.

When I was in Turkey buying furniture I realised I was much less fussy about things than my sister if it looked fine was comfortable and did the job I said yes. Although it was good to have her with me for dealing with snags with workmen wheras I would have just let them go to preserve my energy, she was quite happy to go and deal with little problems so I guess sometimes I am delegating decisions to others if they are unimportant to me.

At the same time I do like to be included in decision making that effects me for instance it was nice to have my bathroom painted but I really don't like green and it would have been nice to have been asked what colour I would like. Again this is not major and I can live with it.

I think using target setting has contributed to my becoming more decisive because I set a target break it down into small steps and then achieve it- which is how we now have our lovely house in Turkey. I do say to my husband be careful what you wish for !!! If I set it as a target it will happen.

Its much less tring to be decisive and so far nothing really bad has happened because of it apart from buying a wardrobe that is a bit too big for Turkey- small thing.

Happiness Project -What Are You Going to Do Today

What Are You Going To Do Today Ask yourself the folowing questions
Is it fun, will it make you happy?
Will it make you feel better?
(Will it make you feel worse)?
Is it necessary?
Do you really want to?
Can you get someone else to do it?
Will it be hard for you but will you feel better after?
Will you feel like you have achieved something?
Does it matter if you don't "achieve" anything- in this life- on this day
is it enough to BE
yo love to be kind to anyone you meet
to care for and about others
to allow others to care for you
to laugh and be happy
to have fun every day

Happiness Project- Making Slough Happy

I have been a subscriber to Gretchen Rubin's Happiness project for some time now so have been thinking of ways of making myself happier.

I decided some time ago if I can't be healthy I am going to be happy so I have been working on my own happiness project and looking for information about being happy or becoming happier.

There was a programme on in England about a year ago called Making Slough Happy and te following is their list of 10 steps to Happpiness

1. Plant something and nurture it.
2. Count your blessings-at least five at the end of the day.
3. Take time to talk-have an hour long talk with a loved one each week.
4. Phone a friend who you have not spoken to for a while and arrange to meet.
5. Give yourself a treat every day and take time to really enjoy it.
6. Have a good laugh at least once a day.
7. Get physical-exercise for half an hour three times a week.
8. Smile at and/or say hello to a stranger at least once a day.
9. Cut your TV viewing by half.
10. Spread some kindness- do a good turn for someone every day.

I'd forgotten that I had this list so I am thinking I might try and do some of these things from memory I think the people living in Slough had to do one of them each week and then carry on doing each one while adding the next.

Will let you know how I get on with it Do you have any things that you try to make you happy each day?

gentle hugs

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

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

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

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.

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

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

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.

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

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

Emergencies- going out of your energy envelope

I am having to give support to my daughters partner as her mother had very suddenly become ill and is now receiving palliative care only. It has all been such a shock and the children need lots of support.

I am trying hard to support them while at the same time looking after my own needs and am finding reserves from somewhere but know I will eventually crash.

sometimes it is necessary for a special occasion or a time when others have greater need to deliberately go out of your energy requirements.

So if you know it is coming up have rests before and plan to have rests after. Rest as much as possible during and look after your own needs in order to look after others. A bit like putting your own mask on first before your child in an aeroplane.

Make sure you have plenty of medication including emergency supplies and anything else you use for pain relief. Drink plenty of water and eat enough snacks- now is not the time to watch your weight. Take your medication regularily set an alarm if necessary.

If others offer help take it whether other freinds or official support don't be afraid to ask.

Use whatever is there to get through it and when it is over give yourself praise for your efforts ans look after yourself and ask others to look after you too.

love and hugs

Sleeping in a strange bed

It can be a problem whem you go and stay in hotel or on holiday getting comfortable in a srtrange bed and can increase your pain and make for a more painful day following. My Mum's spare bed was terrible so I sneaked out and bought a matress topper which has helped a bit. She has since bought a new bed and got a topper for it as well. I uased to dread visiting because it increased my pain for days after.
So what to do when sleeping in a different bed. You could take a mattress topper with you although it is a bBit bulky to take about with you. I I have recently bought a travel tempur mattress from ebay quite cheaply. If that is not an option I get whatever extra bedding is around blankets or spare quilts to pad the mattress ask for extra pillows and I always take a little heating pad to aid with pain relief. I bought a small electric one cheaply from Lidl or you can use microwavable one in case no electric available or a hot water bottle. I might also take extra medication pre-emptively so to speak to help alleviate the problem. At least you are aware of the problems of sleeping elsewhere now and can plan ahead next time. Maybe buy a topper to leave at your daughters if you will be staying there again. Hope this is of help kind regards Linda Ferriter

Blah Days

Today has been a bit of a blah day. Can't really explain why, woke up after really strange dream so was glad to wake up. It was a beautiful sunny day but just couldn't motivate myself to do anything. Sat in garden then summer house but just couldn't get comfortable felt vaguely uneasy all day and just blah.
Wanted to go out but just couldn't be bothered my DD went out and asked if I wanted anything and I asked her to bring me back the world.
She brought me back drumstick lollies as she said I was off to New York to play the drums- just go with this one, a hippo sweei because I had been on a safari, rainbow drops as I had been to the end of the rainbow. a girls magasine called bliss bcause that was how I would feel abd then a fab lolly because I am just fabulous- well you can imagine the tears were flowing from this and it was time to shake off this blah day. We read out silly things from the teen mag and I feel better now but glad this day is over.
How best to deal with one- go with it, maybe have bath and cry, do something nice for yourself, talk to yourself this day will pass and you have coped before and you will cope again. goodnight

Dreaded DLA Form Part 2

Have had two reminders for this form and as my weekend wasn't so good health wise and also following a meeting with a medic on Thursday that didn't go to well , I thoguht it's time to give it another go.
Wasn't able to get up until 2pm today and that was only with Tom coming and saying come on Mum its a lovely day so up I got and made a good start on the form have completed lots of the pages now and need to just get it copied and send it off and hope for the best. I think my problem is that it can be so important- will they let me keep the mobility element or take it away or the care element and then if they do what do we do for transport?
But.. I need to just stop catastrophisng about it get it done in the post and forget about it.

I will feel very glad when it is don it just makes you feel so low when you have to keep thinking about how bad you are but having had to complete that other form for the pain consultant on the hop last Thursday I just thoguht if I can do that so quickly I can do this one as well. So although I really was distressed by that meeting it maybe has done me a favour because it has spurred me on to do this one.

Talking to Medics 3 -It's All In Your Head Innit

It was with some trepidation that I attended a meeting with a new pain consultant now at St Thomas'. Arrived half hour early which was a blessing as I was confronted with an 8 page form to fill out with medical history how do you feel today how did you get it all that kind of stuff.
Luckily I had my trusty notebook as well as a printed medical history form- prepared by me- as well as a medical history report I had asked for from my GP.
It is so dperessing filling out these forms there is a picture of a body and you have to show where it hurts where it hurts the most, what makes it worse, what makes it better that kind of thing.
Wsn't it good I was early receptioinst said it should have benn sent to me and Iwasn't allowed to go in until I had filled it in. Consultants are Gods you know.

Well I did feel a bit low having written all this depressing stuff cos normally I keep my pain somewhere over my right shoulder so all this writng about it flooded it back into me poor body so was feeling bit tearful and then was called ito yer man.

To say that we didn't take to each other was an understatement he started asking me about acupan- which I don't take anymore- he was looking it up in a medical dictionary. When I tried to tell him about it he did the classic talk to the hand thing that I would bash my kids for if they did it to me and said"I can't listen and read". Why ask a question then??
He then started asking me what I knew about fibro and what trauma had I had in the past that might have caused it because it must have benn something because it is pyschosomatic you know. (Insert Scream Here)
Well feelin fragile I started to cry and he said I will stop asking questions but the psychologists on the course won't. He also claimed he had never heard of Prof Davies why was he doing fivbromyalgia when he was a sports specialist- what people with fibro would be doing sports??
I wonder does Prof Davies know he is referring his patients to a fellow specialist who doesn't think much of him and also thinks that fibro will go away if you get rid of all your demons from the past.
Thankfully he informed me he is not part of the team running the course as frankly I would not go on it in a million years if I thought he was.
Now what to do about this should I complain about him, talk to fibro support group at hospital or maybe my arthritis group of ladies or maybe everyone. Have been left pretty shaken by this and had to have a good cry when I came out which was bit odd for the poor lady taking pictures from the top of a London Sightseeing Bus.
At least it has left me in the right frame of mind to tackle the disability form. Have another meeting about the course next Friday which incidentally is four weeks and not the two weeks i was told it was by the fibro consultant.

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

Invading my Sanctuary Help Mouse!!!

I have been very tired since coming back from my Turkish trip mainly to buy furniture for our house. It was extremely busy and because there was a time frame to work too I had not much choice but to go outside of my energy envelope.
I am horrified to find on my return a mouse living in our bedroom that my husband has been chasing around the room every night since. I feel so tired I find it almost impossible to keep my eyes open even during the day and my pain levels are sky high. I am finding it very hard not to be really grumpy all the time but the worst thing for me is that I want to withdraw to my sanctuary- my bedroom- but feel that it has been invaded by this unwanted albeit tiny visitor.

Its interesting to me how important it is to have a place where I can feel as comfortable as pssible when the day is not going well becasue of pain and tiredness and you jusy want to be alone.
I have bought some different traps and have been forced to have massive tidy up of bedroom which on a plus side is nice that it is tidier but not so good that I feel even more tired from the exertion of it all. will let you know when my visitor has gone and I do hope it not a family of mice help

Letter To Normals -I'm not sure about it?

When I was first diagnosed with fibro I think I quite liked this letter.
I wanted to make the world and everyone I met understand what it was like for me, how much I was suffering, how bad I felt. But now I think I don't really care what others think other than those that are close to me.
If friends are lost then how good a friend were they in the first place?
If people think I look good or I am getting better then does it really matter?
Those close to you want you to be well and happy does it help in any way if they truly know what your life is like?
I don't like to talk to about myself as someone who is suffering who has demons I don't think of it as helpful self talk.

I think I prefer the spoon story but I reproduce it here for you to decide for yourself, some of it is good but I don't know what do you think?
Maybe the thing is to use it to start one of your own.

The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed.
And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless.
My pain works silently, stealing my joy and replacing it with tears.
On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating.
And in many ways my pain may be more destructive because people can’t see it and do not understand.... Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you.
My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy.
I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled.
When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something.
Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal.
Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn.
Please try to understand…. Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably.
I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week.
I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably.
And there are those who say “but you did that yesterday!” “What is your problem today?”
The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit.
I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask?
I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways.
Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different.
I too have hopes, dreams, goals… and this demon….
Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees?
I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that.
But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Please understand…. Thank you for spending your time with me today. I hope we can work through this thing, you and I.
Please understand that I am just like you… Please understand….
Copyright of www.fibrohugs.com Written by Ronald J. Waller

Gadget Babe

I do really love a gadget my favourite one being my ipod but I like to find other things not as expensive to make my life easier and more interesting or just for fun.
Here's my list of top gadgets:
Ipod Touch- not only can you listen to music and podcasts, I have talking books meditations, films and games on it. hours of fun and distraction. Am completely addicted to bejewelled an application to add onto the ipod.

Nintendo DS- I don't play on this so much now becuase of the games you can put on the ipod but like 42 card games for solitaire games and Professsor Leyton puzzle games as well as brain training- goota keep the brain working somehow.

Nintendo Wii trainer- Ok the only one I am top at is the sitting down meditating but it does get you moving in a fun way although cannot master ski action and watching other people try to hula hoop is a just hilarious for some reason.

Remedi Pain Relieving Device- like a TENS machine but more powerful and you place the pads on your spine to block the pain signals to the brain. I don't find it works so well for pain above the neck but it does take the edge off the pain and the Remedi Company are always extremely helpful with repalcements or repairs in fact I now have a spare one that I was able to purchase at a cheaper price.

Tempur cushion- this is a very soft cushion that I made a bag for so I look like I am just carrying around a bag which I then sit on. Very useful to increase your confort in restaurants, pubs so you can stay longer only criticism is it is a bit heavy so I had to make a more manly bag for it ie brown instead of orange flowers so that my hubby will carry it for me.

First Class Sleeper- this is an inflable cushion that goes behind you to increase the comfort while on an aeroplane. It was invented by an airline pilot and makes airplane seats and other seats much more comfortable by giving more support behing your back and neck.

Electic Heating Pad- bought this for about £10 in Lidl but they are about £20 lovely to give heat where there is pain or just to warm up the bed. I keep one upstairs and one downstairs. Blissful heat.

Wheat or Rice Pack- Have made several of these using a tube of material half fill with rice and add some dried lavender. If you don't know how to use them they just go in the microwave for two minutes and are lovely and warming for pain. I particularily like them for facial pain as they can be held around the face for good pain relief.

Multi-adaptor- when I go away anywhere I take an adaptor with me as I have so many gadgets to plug in and you never know how many sockets will be in your accomodation whever staying with relatives or hotel.

Woollen wrap or cardi- have a lovely woolie wrap that can make sure you keep warm I find can get increased pain levels if get suddenly cold or also double up as a pillow or cushion. Its all about comfort.

Counselling CBT It Helped Me

I have been lucky enough to have had six weeks of Cognitive Behaviour Therapy on theNHS and then have had two years of counselling with the Wimbledon Guild at reduced cost.



At first I went to counselling because of on-going problems at work with a manager who had great difficulty dealing with someone with an invisible disability. I soon found that I had other problems wghen I realised that this new illness I had been newly diagnosed with was not going to go away, there was no cure and it seemed like a life sentence.



Going to counselling mean't not only was I able to deal with my problems at work, cry shout about the unfairness of it all but I was able to deal with the grief I felt about losing the person I was. That busy person who could do anything and probably more than one thing at a time.

Who was I, what was going to become of me when I had no job to define me? I was given extra sesssions when I found that I could not cope without the weekly sessions following a problem in the family just before last Christmas, I was not ready to do without my listening ear.



I was also able to explore problems from my childhood that I didn't realise I had, feelings of the strong need to be liked and overcaring for people then being surprised when they did not live up to my standards.



This was indeed a bonus of receiving counselling and I now feel like I truly know myself, what my needs are, my strengths and weaknesses. My reasons for behaving as I do and I feel a great peace within myself because I know myself. Whatever hapens to me I will be able to cope, I will manage, I will survive. If you get the oppurtunity to have counselling say yes please and take full advantage of it.

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.

Deciding To Be Happy

I made a decision not too long ago really that if I can't be healthy I am going to be happy.
The first time I ever went to counselling for Cognitive Behaviour Therapy I was told that I did not do enough things during the day for fun.
. It was all work or family responsibliites so the first thing I had to do was think about ways of having fun. Every day now I think about what I am going to do for fun or happiness that day.
Of course that really depends on how I feel on any given day and plans are sometimes changed at the last minute but I like to have things to look forward to so I plan lunch with a friend, an early drink with my husband a holiday or outing.
If it happens that the day is one spent in bed then I watch a happy DVD have a facial, paint my nails anything to keep my mood up or using the trusty notebook plan future outings or speak to a friend or sister on the phone
. Its not easy to keep yourself "up" but the alternative is inconceivable my talk to myself is uplifting I hope yours is too so tell me:

What are going to do today for fun?

Flare-Ups

Had a terrible night Wednesday night couldn't sleep for pain in face had taken all medication possible and then just got up to come downstairs to be alone to pace.

Felt very bad and not consciencly deciding just trying to report how I dealt with it. Not saying this is a good way but only what happened. Had a good cry for ten or so minutes and a bit of a rant poor me, why me why won't it stop to myself. Then I gave my nose a good blow told myself to STOP put on the telly and a heating pack for my face and laid down on the sofa with the dog for a while. Paced up and down for a while telling myself well you've had this before you managed. It will go away had a play on my ipod still can't get good score made a cup of decaf tea and waited for next time tablets due. Eventually dozed off on sofa.

Then I went back to bed reviewed available tablets decided to have breakfast and then take tablets that I know will make me sleep.
When feel better think about is this a new pain? is it dental? do I need to see doctor?

Have had quite a few bad days in a row so will think about logging days to see if can work out cause but also accept there may be no cause. But am glad that day is over

Talking to Medics

Yesterday I had an appointment with a new consultant at Guys Hospital. I had been seeing Professor Davies who is the leading expert in Fibromyalgia ie the only one that seems interested. I am noe seeing his Registrar Dr Aslam. So after a mix up with my appointment which meant I was a month behind I arrived with some trepidation as always when seeing someone new. Will they understand will they give me time to answer will they listen?

The only way I can deal with appointments is to be as prepared as I can be with my trusty notebook in hand with a short overview of where I am now how I feel, what my symptoms are what medication I am taking together with a typed history of my condition with medication tried together with a bit of family hostory in case asked for this to refer to if needed. Ideally it would have been useful to have a diary of my last week but I just find that too depressing to write so I didn't have it with me. Mu history of conditon wasn't quite up yo date but it was good enough to answer a querie that the doc had about an effect a previous medication had had, will update it soon.

I like to have it all written down for two reasons so I don't forget a question that is worrying me and also in case I get a fibrofog moment which did happen to me before and can't say properly what is wrong then at least I can point feebly at the relevant question. If you do have a lot of fibro fog I would advise taking someone with you that knows you well to help out if you get stuck.

All in all it was a good meeting am being snet on a residentail pain management course depite my having tried many courses before and some new medication which I have to try with quarter tablet then half then three quarters to whole so I don't get too many side effects. Can't remember name of it- should have written it down in trusty notebook= but know have not heard of it so probably experiwmntal for us guinea pigs oink oink

Asking For Help- Again and Again

Am now on my third day in bed am coping Ok with it but it brings me to this dilema. Having to rely on others to help you by bringing you refreshments, medication, water or other things because you either just cannot get out of bed because you are just too tired or have got a bit low and bed is the only place you are comfortable.
I sometimes feel like Miss Haversham shut away in the attic with no visitors the worst being knowing there are people in the house and they don't come near or by you. Maybe you don't have this problem but its hard to have to keep asking for help without feeling like you are whining or getting cross. I don't really know the answer to this one tried to bring up what I need myself and think about having another talk with offspring about needs. I guess they don't like to think that you are poorly and would rather close their eyes to the fact and think you are just having a lazy day in bed.

I think it is because the nature of the illness is to be invisible so you don't look sick and in the main you behave as if you are not sick so it seems to come as a surprise that you might need help after all you are the Mum.
Tomorrow will be better will try to get up and go out.

Duvet Days

Have just had a day in bed yesterday where although wanted to get up just couldn't from fatigue and pain so settled down for a day in bed.

I try hard- not always successfully- to keep my bedroom a haven where I am as comfortable as possible and have things around me to amuse and entertain me.

I have pretty PJ's or put on comfy tracksuit have plenty of water and few snacks to keep me going in case no-one around to bring me any.

Unless it is a day where I know that sleep is the only thing to do I open the curtains so I can look out at the trees in the park behind my house.

I have a kind of toolbox as recommended on http://www.painsupport.co.uk/ps_home.html.

Anything I think will make the time pass in as happy a way possible:
Happy DVD's, My Ipod and Nintendo DS for listening to music, podcasts or playing games, my notebook for jotting down ideas, my lists of plans for the future.
I might ring someone if I feel up to it or text if I don't just to make contact with the outside world. I might go on my laptop if I feel up to it to pass a bit of time send emails, look up things that interest me. I also like to write a few cards or letters but sometimes am not in the right frame of mind for this.
I had a lovely day once when my daughter joined me and we had a beauty day. Doing each others nails, having a facial and meditating. So I might do this on my own if no-one around.
I do like to have visitors and leave my door open for that but I don't always get them and sometimes feel like the mad auntie locked away in the attic. It is hard if there are too many of these days but I try not to let myself get stir crazy and stop myself from having too many negative thoughts. I've had days like these before, I've coped with them and I will get over them. What do you do to cope with duvet days

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

Holidaying with fibromyalgia

Have just had a lovely few days away with my husband in Kent, but not too long ago the thought of travelling anywhere would have filled me with dread. Would I be able to cope with the travelling? Would the room and bed be comfy? Would it be boring for D when I can't join in because of pain or tiredness?

But now I look forward to our times away because like a good boy scout I make sure I am well prepared for the journey and the increased activity when away from home.

Its all in the planning about a week before I will start thinking about and getting together anything I think will make my holiday more enjoyable:
heating pad, enough medication, ipod, magazines, Nintendo DS, notebook, pain machine (Remedi pain device) and good beer guide for nice pubs.
I will try to research the area we are going to for things to do and places to visit checking out disabled facilities if I think I need them. I used to feel embarassed about asking for wheelchair assistance or concessions but now I just ask. The problem is one of not looking disabled but we had a really good experience at Leeds Castle in Kent offering disabled concession- free carer, land train up to castle, entrance through front door instead of down steps and wheelchair if needed.
Some other places have made me feel a bit like i am trying it on and was once given an enormously wide wheelchair I think because they thought the disabled person was in the car- I hope that is the reason anyway. When we went to Cornwall it was the first time of using a wheelchair and I cried the first time beause it is just admitting you need it but D convinced me it was better to use it and be together than him look around the gardens and me waiting in the coffee shop. D had to get used to it too as he kept abandoning me in various places while he went to look at plants and the like.
At the Eden project I used an electric wheelchair which was great apart from my lack of driving skills as I ended up managing to climb up a tree trunk in it until D came and rescued me. It was handy though when it started to rain as I could just speed off under cover and leave D to get wet.


The most inportant thing to take away is enough medication- I also have a letter from my doctor stating that my medication is on prescription and would check the country I am going to in case they have any rules about what medications are allowed. I always take them in their original boxes maybe being a bit paraniod but better not to have any worries.

Strangley enough had wierd reaction to sheets at hotel in Kent sneezing and itching every night so now will have to add own bedding to list. I have now bought a travel tempur matress but forgot to take it!!! In the past if the bed is too hard I have used any extra bedding in the accomodation to pad the mattress like blankets or spare quilts to make it more comfy.

If your journey has been long don't forget to allow time to recover- I didn't do that last year when we had flight delays and an awful journey and wasn't right for a good few days after arrival when I would have been better to have rested completely the first day and left D to his own devices.

I find that any holiday means spending some time apart but we are used to it now and will decide to go out during the day or in the evening or David might go for a walk while I rest or do somethng less taxing.

We even took a Dvd player with us this trip in case there wasn't one in the room and watched a nightly episode of "The Prisoner" together.

The Dreaded Disability Living Allowance Form

Ok I've had it a month now-had a reminder to send and still can't bring myself to do it. I keep telling myself I'm researching it so have rang a few helplines for advice on what to write. Have printed off guide from http://www.benefitsandwork.co.uk/ and filled in my name and bank details and then.....

I guess its just it makes you think about how bad you really feel, how little you can do and the outcome could still be they take it away from you and you have to fight to get it back.

I know I said I had become decisive in my 25 things but this one I just cannot get to grips with and now I can't find a black pen so.. can't do it today either. Am going away today for a few days to Hever in Kent so maybe next Monday? Will let you know when I have completed it.

Why I Love My Ipod

I often have nights where I can't sleep because of pain or wakefullness so I rely on my ipod for distraction from pain and to keep me from thinking too much about worries. I rarely listen to music but listen to various podcasts about quirky news items, stories and some meditation. I have tried talking books but find that when I fall asleep it justs plays on and then I don't know where I am in the story so it takes a long time to get through a book- but maybe that's a good thing because they must be sending me to sleep right?
Here's a list of my favourites:
APM A Prairie Home Companion-the news from lake wobegon
The Archers- english radio soap
EFT Talk- emotional freedom technique- how to do tapping
Good Night- Dick Summer ex radio presenter with a silky voice to send you to sleep
Meditation Station -guided meditations by Stin
My Thought coach- more meditation by Stin
A new Power Nap every day- if you haven't slept a quick boost for daytime
NPR Driveway Moments- short uplifting stories
NPR most emailed stories- news and interesting stories
NPR Storycorp- short interviews with people across America
Podquiz weekly- we like to do this quiz as a family listening on speakers but we are not very good at it
PRI selected short stories- short stories read live
This American Life
WGBH Morning Stories
Wrightales- Fairy Tales for grownups

I couldn't manage withiout my pod so much so that my husband bought me a spare- just in case.

If you don't have an ipod you can copy the podcasts from itunes onto a CD and I forgot to say the best thing about them is they are all free- yippee

101 things in 1001 days - my list

101 Things in 1001 day

1. Lose 30lb and keep it off -7/30
2. Play on Wii 3 times a week for a month 0/12

3. Swim every other day when in Turkey in the summer 0/56
4. Do all fitness Dvds in cupboard at least once 0/5

5. Have spa day at home with friends 0/1 planned for next Tues
6. Have Turkish Massage 0/1
7. Pay off credit cards 0/2
8. Pay off at least half other debts
9. Save towards emergency fund 3 months out goings 200/10000
10. Put £10 away each time complete challenge use to finance other goals 10/1010

11. Don't buy any clothes for a month 7/31
12. Use pain machine every day for a month record if it helps 0/31
13. Go to comedy club 0/1
14. Go to cinema that has sofas in Knightbridge 0/1
15. Go to outdoor cinema 0/1
16. Cover sofa cushions 0/5
17. Get Front garden tidyed 0/1

18. Insulate loft space and put flooring 0/1
19. Fix fence at bottom of garden 0/1
20. Plant more flowers in garden
21. Get curtains for front room 0/1
22. De-clutter every cupboard in house 0/15
23. Spring clean every room- not me!! 0/8
24. Complete the dreaded Disability form 0/1
25. Dye my hair purple or blue or pink before I am too old to 0/1
26. Become a Reiki Master 0/1
27. Try a flotation tank 0/1
28. Learn Turkish good enough to hold conversation in shop or restaurant 0/2
29. Stay in Bellek Castle 0/1
30. Drink 8 glasses of water a day for a month 0/31
31. Go for a ride in a hot air balloon 0/1
32. Go to have feet nibbled at place in Turkey 0/1
33.Ride on banana sofa by sea 0/1

34. Go to Saltzburg to waltz and opera with David 0/1
35. Get a tattoo even if it is fake haha 0/1
36. Drive an open top sports car 0/1
37. Go to Istanbul 0/1
38. Have a bonfire with all papers re work complaint 1/1 completed marvellous
39. Swim the English channel in pool 0/38000yards
40. Go to lunch alone with each of my children-don't be scared kids 1/4
41. Make some soap 0/4
42. Go blackberrying and make jam 0/6 pots
43. Meditate every day for a month 0/31
44. Learn to play ukelele one song well 0/1
45. Wear makeup every weekend for a month 0/4
46. Have eyelashes dyed 0/1
47. Make air raid shelter into house 0/1
48. Listen to all songs on ipod A-Z 92/3765
49. Make some saresses for family and friends 0/4
50. Make pattern for dress and make it 0/1
51. Go to tea dance in afternoon 0/1
52. Sing karoake in public 0/1
53. go dancing with friends 0/1
54. visit all pubs in Surrey bit of 2009 good beer guide with fire with David 2/69
55. Wear a dress every day for a week 7/7
56. Wear everything in my wardrobe at least once or give it away 1/50 ish
57. Keep gratitiude journal for month 5 things a day 0/31
58. Go on a picnic 0/1
59. Book a hotel on Friday to go on Saturday 0/1
60. Take dance class (with David for bonus £10) 0/1
61. Take some good photos and enlarge and frame them 0/4
62. Have family portrait done 0/1
63. Make use of library go at least ten times 0/10
64. Go to Bath for a holiday 0/1
65. Have a clothes swapping party 0/1
66. Add more slate to back garden 0/1
67. Go to auction and buy something nice 0/1
68. Blow big bubbles in the garden with Catrina 0/1
69. Go to three art galleries 0/3
70. Send up a video to you've been framed 0/1
71. Read all books on bedroom shelf and give away ones don't need to keep 0/50
72. Watch 50 new DVDs 0/50
73. Read a Turkish book or newspaper 0/1
74. Write a short story and send it to a magazine 0/1
75. Make and print family recipe book 0/12
76. Do an online blog for a month 7/31
77. Learn to put talking books onto my computer instead of having to ask P or T 0/12
78. Start a website ask for help P or T 1/1
79. Write a song 0/1
80. Sing a song and record it 0/1
81. Ride on a trike in London 0/1
82. Spend a weekend doing exactly what I want once a year 0/3
83, Go to a spa once a year 0/3
84. Go to Ritz for high tea 0/1
85. Go to London be a tourist on tourist bus 0/1
86. Give 5- just because-gifts 0/5
87. Donate 1,000,000 grains of rice to Freerice 4,000/1,000,000
88. Ride on back of tandem 0/1
89. Paint an oil painting on canvas 0/1
90. Make a quilt 0/1
91. Knit a squares blanket 0/1
92. Go to belly dancing class 0/1

93. Write a book nanowrimo 0/1
94. Beat David on the Wii ideally tennis but will settle for golf 0/1
95. Holiday with kids here and in Turkey 0/2
96. Furnish house in Turkey 0/1
97. Make a bean bag 0/1
98. Give myself reiki every day for a month 0/31
99. Share a skill-reflexology or indian head massage, computer training with Joyce 1/4
100. Learn how to make cards 0/12
101. Go to flower show 0/1

101 things in 1001 days

Hi everyone I an just going to start doing this challenge and wondered if anyone fancied joining me. Its sounds interesting and also fun. Your list will of course be completely different to mine but I had fun making it and hope to have great fun doing- most- of them. David is looking forward to the pub crawl in Surrey but doesn't think I will get him to do the dancing class. sorry about the rubbish spreadsheet but maybe "someone" (Hi Telbel) might be able to make it better for me. I used these websites for info to start me off for ideas of things to do but really you can put anything you like.

http://www.dayzeroproject.com/

http://www.foldedspace.org/weblog/2007/04/101_thing_in_1001_days.html

http://www.dienu.com/

I am starting on first March and will therfore finish on 27th November 2011 I don't expext to get them all done but if you want to join my 101 CLUB it will be interesting to see what other people decide to do and how they get on. Happy 101 ing

Its a bit like an enormous target list. I really find its important to have things to look forward to especially on those days when you are not able to do very much-like yesterday. I like to do a bit of planning and have a few note books on the go with various projects that I am working towards. I start with a list then Break it down into achievable bite size bits.

For instance-I am trying to recover my sofa so first thing was: 1. fix broken cushion, 2.buy velcro for closure, 3.ask Ellen (daughter) to help make pattern and then hopefully she will help to 4.cover them. Have completed 1 and 2. Will do similar thing for my 101 things. I am starting on 1st march 2009 and will finish on 27th November 2011.