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.