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.

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

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

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.

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

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