Chronic Fatigue Support Forum UK

2011-12-11T19:48:00.001Z

I have exciting news, the 6th book is out and ready for download on Amazon.co.uk and Amazon.com for just £1.90, this is the 6th and final book in the Forum Publishing range and not to be missed.

It is called The Cupboard Under The Stairs and according to our Author, Mr Roger Knowles, it his favourite of the 6, if this is his favourite it must be great, as each and every one of the books so far has been a favourite of mine its own way.

here is a little bit about the book from Forum Publishing

Harry Tompkin is a loner, though not by choice. He’s also a genius woodcarver. When his latest creation is finished, things begin to go wrong, and DI Jack Hogg and DS Peter Edwards are called in to sort out the mess. The chase is on and time is running out....

Remember 50% of the proceeds of every Kindle book sold goes towards keep our forum running so that we can help those with CFS get the support and understanding they deserve and can be lacking at times. Feel free to visit our forum to see what we are all about.

I can't think of a more perfect Christmas gift than one of our kindle books to read, so that you can take some time out from the madness and curl up with a brilliant book, which ever of the tittles you choose you are sure to be entertained from the first page to the last.

Have a very Merry Christmas and a Happy new year. May you get to read in peace.

more fun available for your e-reader

2011-11-07T08:38:00.001Z

Morning people!

Well what can I say, it has been a busy time for Forum Publishing as book number 5 is out already and, all I can say is wow, I got it a few days ago and I have been reading and it is absolutely hilarious, it is called, The Day of Reckoning and is a prequel to The Naked Emperor and we all know how much I enjoyed that one, I have come and sat and read bits of it a few times and each time I have been laughing like a mad woman, it is absolutely brilliant, and I am in love with Orph. The characters are amazing.

This book goes into the day that Simon decided he had enough of repairing motorbikes and it is a book not to be missed. I have been having bit of a rough time with my health recently and this is the perfect medicine I haven’t stopped laughing yet.

Forum Publishing also has taken the plunge and set up on Wordpress you can find us here. We have a wonderful question and answers opportunity with our Author Mr Roger Knowles, there are photos of the man himself and a little about him and forum publishing, jump on over and take a look, you wont be disappointed

I am going to update again soon, just wanted to let you know everything is happening fast, so don’t get behind make sure you don’t miss out on the books, they are all now £1.90 each which is nothing for the quality of book you are getting.

more exciting news

2011-09-25T15:44:00.001+01:00

Well, what a couple of weeks its been, I have had a bit of an accident and currently have my arm in a cast, hopefully it will be removed tomorrow so I will be back to causing my usual chaos, But we have big news, Roger's 4th book has been released on Amazon for the Kindle. It is called The Association and already has some shining reviews, Even more amazing news is this book is available for a limited time for only 86p!

If you haven't got a Kindle don't despair, as I have said before there are apps for every device you can imagine reading on it seems and I use the PC app. It is easy to download and easy to use and I am forming quite a collection, I have Roger's books and have a load of freebies I have hunted out, plus a couple of others that I am yet to read. You really have no excuse for missing out on this wonderful read.

it is available on both amazon.co.uk and amazon.com The Association is another must have from Forum Publishing but be warned this is an introductory price and cannot remain for too long. A percentage of every sale goes towards helping keep our support forum running so that we can help those suffering from CFS on a daily basis.

Slow Cooker Vegan Rice pudding

2011-09-25T15:22:00.000+01:00

This is a recipe I adapted from a regular recipe I was given and it turned out wonderfully, it reminded me of canned rice pudding and was a really nice treat. not to be eaten a lot as it does contain sugar and is full of carbs, but for when comfort food calls, this hits the spot. Feel free to sub the Rice milk for a milk of your choice, If you use soya, or regular milk the Oat cream is not essential as it will be creamy enough.

Slow cooker vegan Rice pudding

100g Pudding rice

30g unbleached cane sugar

750ml Rice Milk

250ml carton Oatly cream ( Tesco is the only place I can get this)

Handful of sultanas ( optional)

About a tblspoon of ground nutmeg. ( optional)

if omitting the nutmeg and sultanas add about a tblspoon of vanilla extract.

Method

Put rice and sugar, sultanas and nutmeg into the bowl of the slow cooker.

Heat the Rice Milk and Oatly cream in a saucepan until just bubbling.

Pour milk and cream over the rice mix and stir well until it is all combined.

Cook on high for 4 hours or low for 8 hours, keep an eye on it as each slow cooker is different, mine was cooked in 3 hours and needed stirring regularly as it was inclined to stick.

Sorry for the absence

2011-09-05T11:59:00.000+01:00

Well where to start! Things have been very chaotic the last couple of months it started with my dad taking ill back in July and he passed away peacefully on the 22^nd July there was all the emotions to deal with and preparing for the funeral then the day itself, which alone was exhausting.

The funeral was amazing and the operatic friends of my mum and dad and their other friends have been truly amazing, the whole church was filled with song and music, I swear it lifted the rafters when they started singing. We have had so much support off friends we simply couldn’t have asked for more off anyone.

My mum went up to my brother the following weekend and stayed for 10 days so my husband and I were down looking after her dog who is an absolute pleasure to be with but I was up very early most mornings and trying to keep him occupied and walked and was absolutely worn out by the time we came home.

During this time Rogers new book, To Be A Man was released by forum publishing via Amazon Kindle, I downloaded it but didn’t have chance to touch it for a long time as I was too busy with everything and the video was done and put on YouTube. I am still reading the book and it is brilliant. It is taking me a long time at the moment to read it due to the fact I really am not very well but what I have read o far is great and really tugs at your heart strings. Again it is very different to Broken Cats and Cowboy hats and also to, The Naked emperor, Roger is very talented, to be able to change the vein of the books yet them all be outstanding is a talent few seem to have. If you haven’t seen the book yet you must watch the video and get the book, every sale helps keep the forum running so that we can support people suffering from CFS/M..E

There has been a lot going on with the forum and the Mods have been working flat out to ensure everything runs smoothly whilst many of them are having a really hard time themselves, mixed in with school holidays for them to cope with and family visits. They really are an amazing bunch of people and my hat goes off to them.

My husband and I have made a major decision that we are going to try for a baby, we have said for the last 4 years that our plan was to have a child but due to my deteriorating, rather than improving, health it has been put off and put off waiting for that miraculous recovery. We have come to the conclusion that it isn’t going to happen any time soon and as we are both not getting any younger it is time to set the ball in motion and start preparing. I am currently coming off all my meds and am just down to my supplements and two pain killers a day.

It has hit me like a steam train and I had no idea that my meds did so much for me, I have spent the last week really very ill spending an awful lot of time in bed or sat not able to do anything as I have been so exhausted sore and ill. This is not like me, I am not one to give in and go to bed I will fight through it but I have literally been unable to I have been sat here nearly passing out before I have given in and gone and lay down.

I have had a bad weekend and felt extremely low and literally felt I had gone into meltdown. I couldn’t cope with anything, I felt totally overwhelmed and there was a lot of tears and anger, which as we have said before is really not good for anyone. I have had good chats with some really good friends and today I am climbing back up and feeling more like the Carrie I know, the fight is back, I just needed that time and release I think.

As my husband said I am still dealing with the death of my Dad as I haven’t had time to really rest and let it sink in, I am withdrawing from one hell of a lot of medication and due to stopping my depot injection my hormones will be running amuck, as well as feeling unwell. I bounce back I always do and I am now on the up, even the most well and balanced people have those times where things just seem to overwhelm them, it is how we handle it and what we do to remedy it that is the main thing.

I was talking to our favourite forum owner, our wonderful Linda and she hit the nail on the head. She said that when we take on a new project we get a buzz for a while, the excitement of planning things and helping someone but as we are unwell we struggle with it, then something else comes along and we think ohhhh we can do that and that buzz starts again so we say we will do it, this is repeated several times until you have too much on your plate and feel you can’t cope. But if you’re like me you are too stubborn to admit you can’t do it and therefore drive yourself into the ground doing it rather than admit it is too much and share the responsibility with someone else. So in the end you have a massive crash and meltdown like I did this last weekend, get over it and start the whole process again.

Our Wonderful Roger would no doubt tell me off for this but it is just my nature and how ever much sense I see in pacing and not taking on too much at once, I think this is my personality and is going to be very hard to change, I get a buzz out of helping people and doing things which lifts me for while so I chase this feeling when ever I can. It is almost being selfish in being generous if that makes any sense, you want to help people but also get a buzz out of it so both of you are benefitting it is only when you have pushed and pushed for that bit too long that the world seems to be swept from under you for a day or two.

Anyway onwards and upwards and please go and check out Rogers books, they are amazing and not to be missed, already there a re 3 different styles of books, there is something for everyone and I hear along the grapevine there will be more to come in the not too distant future, so you must keep up, you don’t want to miss anything.

Vegan Gluten Free Carrot cake cupcakes.

2011-09-02T22:15:00.001+01:00

These are absolutely delicious and I adapted the recipe to make them gluten free, they are really moist and light and much too edible, I wanted to eat them all in one day, they lasted two! so do not ask me how well they keep as they do not last that long.

Ingredients

2/3 Cup Doves Farm Gluten free flour blend.
3/4 teaspoon Baking Soda
3/4 Teaspoon gluten free Baking powder
1/4 teaspoon salt
1/4 teaspoon cinnamon
1/4 teaspoon ground ginger
2/3 cup of unbleached cane sugar
1/3 cup Canola Oil
1/3 cup Alpro soya yoghurt, natural
1 teaspoon vanilla
1 Cup grated carrots
1/4 cup chopped walnuts
1/4 cup of raisins.

to decorate :- vegan cream cheese frosting see below.

1/4 cup non dairy margerine
1/4 cup of vegan or Lacto Free cream cheese if not vegan.
2 cups of icing sugar
1 teaspoon Vanilla

to make 12 cupcakes.

Instructions
1 Preheat oven to gas mark 4 and line a cupcake tin with 12 liners

2 in a bowl mix sugar, canola oil, yoghurt, and vanilla.

3 sift in flour, baking soda baking powder, salt, ginger and cinnamon and mix until smooth.

4 Fold in carrots, walnuts and raisins.

5 fill the cup cakes liners about 2/3 full of mixture and bake for approximately 26-28 minutes until a toothpick inserted into the centre of one comes out clean.

6 cream together margerine and cheese in a clean bowl until just combined then using a hand held mixer whip the cream cheese and marg and slowly add the icing sugar in 1/2 cup batches mixing until creamy until all sugar is combined then add the vanilla and mix until smooth.

7. Once the cupcakes are fully cooled top with the cream cheese frosting and serve. Don't eat them all at once!

Motorcycling and CFS

2011-08-10T13:59:00.001+01:00

The following was sent to me by one of the forum members ian2008 and it shows that we dont always have to give up what we love, we just have to find a way to manage it.

One of my great pleasures and passions in my life is motorcycling. Prior to getting CFS I would ride my motorcycle (bike) as far and as often as I could. My wife and I would go to many race meetings, go on holiday and ride out to quiet country spots and have a picnic. Many pleasurable hours were spent cleaning and repairing the bike. However, since CFS, my riding and enjoyment has been somewhat curtailed.

No longer do I have the energy/stamina to ride when or where I want to. Riding for too long makes me ache; working on the bike has become a challenge and there is always the very real risk of fatigue setting in with a vengeance at a time when I least want it. I suppose it is possible that CFS could signal the end motorcycling, but should I let it?

I am going to share with you my passion. Why? It’s me fighting back and setting a positive mindset.

It is only a few generations ago that motorcycling was the norm: A cheap form of transport accessible to all. Sadly those days are gone with most road users preferring four wheels instead of two.

While the halcyon days of motorcycling have faded into the past, many four wheeled users still cast an interested, even envious, eye at a motorcycle as it weaves its way through Britain’s congested road system. I have lost count at the number of times I have struck up a conversation with car drivers while sitting on my motorcycle at a natural beauty spot or on a busy sea front. I can see in their eyes that there is little voice in their head asking, “Could I ride one?”: I’m sure there are some who find a deeper answer to that question and then go on to enjoy the pleasures that motorcycling has to offer. Sadly, too many will not be able to move beyond the ‘establishment braining washing’ that says motorcycling is dangerous. Of course there are dangers, but these can be minimised with training and correct riding equipment, and the correct attitude. Living is dangerous.

Looking at a motorcycle is a pleasurable activity; cleaning a motorcycle is a pleasure; working on a motorcycle is also pleasure as you make sure that everything is tight and safe and perhaps get that little extra bit of ‘performance’ that the manufacture forgot to add. There are so many types: Some prefer an abundance of chrome and that ‘living the American dream’ with Harley Davidsons; some prefer to go off road and cover themselves and the bike in copious amounts of dirt or mud or water or all three. For me, and many other motorcyclists, I prefer my bikes to be sports orientated: Lots of plastics(known as a fairing) that help protect you from the wind and the worst of what British weather can throw at you. I have spent many a pleasurable hour cleaning the fairing so that I can almost see my face in it. Brilliant!

Motorcycles are odd things really. They are inherently unstable: Kick the side stand a way without holding on to it and it will fall on its side causing hundreds of pounds worth of damage. Seeing a motorcycle lying on the floor is a very sad sight; like a wounded and lifeless animal. However, if you sit on motorcycle, pull the bike up to the vertical and then kick the side stand away, then the magic begins to work. That moment when some of the full weight of the motorcycle can be felt as you lift it upright and then the weight disappears as if by magic. At this point you are straddled across man’s finest efforts to defy gravity and propel human beings forwards at breathtaking speeds, but only if you want to.

The days of starting a motorcycle with a kick start have long gone: Starting a modern motorcycle requires nothing more than pressing a button. Turning the ignition switch to the start position illuminates the instrument cluster with LEDS and LCDs settling to a point of rest after running through some pre-programmed ‘dance’. Now you can press the start button: It is at this point that the DNA of the motorcycle begins to reveal itself. Motorcycle engines vary considerably and it would take at least another 1000 words(or more) to describe the differences and it might only be of interest to those with the technical insight. So let’s move on and ride the thing!

Pulling the clutch lever in and dropping it into first gear is the beginning of the ride and it switches on a green light in the motorcyclists head and the adrenaline begins to flow. Bikes are heavy, but as soon as you begin to move the weight fades away. A twist of the throttle can accelerate you forwards with an immediacy that most cars cannot compete with and it is this acceleration that many motorcyclists enjoy, and dare I say-crave! My bike is quick and it will accelerate to 60 mph in a few seconds, but I have ridden more powerful bikes. Some are so powerful that if you try to use the full power of the engine your brain is unable to process the information that is entering your brain; at this point I slow down quickly. Some riders like top speed, but for me, it is acceleration and cornering.

Cornering: The black art of riding a bike well, and perhaps, the most dangerous part of riding a bike. Getting a corner right is such a pleasure and essential for your long term health. Number one rule slow down! In like a kitten and out like a lion. If you set up the corner properly the bike will flow round the corner. There is a sense of oneness with the bike as it leans over and the laws of gravity work for and against you. Sometimes you can feel the tyres searching for grip which is a little unnerving at first, but you soon get used to it. As the road opens up in front of you, you start to open up the throttle; the bike begins to stand up and you begin to feel that acceleration. Oh the joy!

Rolling country side is the best place to be. Stick to the speed limits and enjoy all that nature has to offer. Because a motorcyclist sits higher than the average car driver and passenger it means we can see across hedgerows and soak up the vista. Smells of the countryside enter your crash helmet and linger and not all of them are a pleasure. Flies splatter across your visor with the occasional thump as something more substantial impacts on your visor. Mile after mile the black ribbon disappears beneath your wheels. It is hard work at times and a rest is essential. Country pubs are brilliant, and sitting in the garden for a couple of hours is guaranteed to charge up the batteries. I am always surprised how many motorcycle dealerships there are in the countryside and have a burger van in the car park. Brilliant! Stop at one these and you can enjoy a burger, look at some bikes and have a chat with other bikers. Heaven.

Finally there is the Track Day: A chance to ride your bike, or someone else’s, on a race track. For those off us who are not riding Gods the bike is always better than the rider. Track days are not a free for all and safety is paramount. You learn so much from riding on a race track. You realise very quickly just how far a motorcycle can be leant over without crashing it: You learn a little bit more about the black art of cornering. Do not try this on the road, but knowing just how far a bike will lean could save your life in a tricky situation. You learn just how good the brakes are on a modern motorcycle. There’re good!

Heading down the straights, crouched behind the wind screen with your body stretched across the petrol tank, your eyes are focused as far into the distance as they will go. The throttle is twisted until it will go no further. Tucked behind the screen there is very little wind noise, but you can hear all too clearly an engine being revved mercilessly; almost to the point of destruction. You are waiting, waiting for that moment when it is time to turn into a bend that is approaching so quickly. Then it is time to slow down. You sit up and your body is slammed by a blast air. Breaking as hard as you dare while changing down and trying to scrub off speed makes the adrenaline flow; your heat is thumping. Your body position has moved to the corner side of the bike and you are now hanging off the bike and you knee pointing outwards at right angle to the bike. Slowly, tentatively, you start to turn the bike into the corner. Your eyes are strained far ahead waiting for the corner to open up. You can feel the bike moving as the tyres strain to find grip. You know that it could all go wrong at any time, but the risk seems detached and I’m usually more concerned about the welfare of the bike. Finally the corner opens up; you start to accelerate out of the corner; the bike starts to right itself and you start to prepare for the next straight, whatever its length, and the next corner. Mad? Perhaps.

After a three or four sessions on a track you are buzzing and worn out. The adrenaline is pumping through your veins and there are usually loads of free cans of Red Bull or Monster being given away and a few of these added to the adrenaline makes you feel Brilliant!

Well, after any of the above riding experiences I am coming down to Earth with a bump. Providing I rest for a few days I can get away with it. How do I have the energy to do any of it? Well, a long run up is the best way. In the old days I would just do it and think nothing of it, but these days it has to be planned with several days of rest.

Should I let CFS take away my pleasure/passion? I say no, but please feel free to think different.

To Be A Man, YouTube Video

2011-08-03T08:57:00.003+01:00

But I don’t have a Kindle.

2011-07-24T21:56:00.001+01:00

My response when I heard about the Forum Publishing venture was 'oh fantastic, books', then I realised they were Kindle books and I didn’t have, and couldn’t afford, a Kindle. Quite miffed with myself I said on the forum that I was sorry I wouldn’t be able to get them, and then I was introduced to the wonder that is the free Kindle for PC application, that you can get literally in a couple of clicks on Amazon.

My brain likes to die on me especially when it comes to anything remotely technical, the first time I tried setting up a router I literally spent 18 days mucking around with it, adamant I wouldn’t give in, and got to the point my husband came up and took the router off me before it flew through the window and squashed a slug. He rang customers services of the little company I got my comp from and had a service plan with, and they couldn’t work it out either, until they came out to help me.

We went upstairs to what was the office, (now a bathroom believe it or not) and I passed him the router, managing not to launch it at him and he took one look and said 'ermm, this is not a modem router it’s just a modem or just a router'. (See, I still don't get it!)

Where did you get this from? Ebay! Have you still got the page you bought it in your history? Yeppers, come on lets see what it told yas. So we find the page with my old little modem and sure enough it was sold as a modem router. Well. I emailed the seller and was as nice as you can sound wanting to call someone lots of unmentionable names, and got the response of 'oh oops' pretty much. Anyway we ended up reselling it ourselves on eBay.

My point was, before I started rambling, that from that day every time I look at something remotely electronic or technical, my brain cells go into, 'can’t cope wont cope mode'. So faced with having to download and install software I had never seen before, never known anyone to use and genuinely had no clue what it did, I thought 'oh no, I don’t wanna do it.' I asked my husband about it and he laughed and said just have a go, I can sort it out for you if needed.

Off I go back to my comp, psych myself up and easily find it on the same page as one of Rogers books, and hit download now, within the space of about 5 minutes I was in the program looking at it and within 10 minutes I had my first Kindle book, Roger's Broken Cats and Cowboy Hats.

I can honestly say this is the best thing I have done. Sitting with a real book I find very challenging, I struggle to grip a book and they are often too heavy for me. I cannot sit comfortably with it in bed or on the sofa so had basically given up reading except for once in a blue moon when I got brave.

I have now read both of Roger's books which are absolutely amazing, feel I have helped just that little bit for the forum, and had a thoroughly good time in the process. I have also downloaded some of the free books just to see how I got along with different kinds of books and they are wonderful they are so easy to read. And the best bit, I never lose my bookmark hehehehehe, yes it goes right back to where you left it every time.

If you haven’t got a Kindle and do enjoy reading, either regularly or like me intermittently, you will absolutely love this application, and the best part is it costs you nothing and is the least complicated installation process possible.

Go get it and see what ya think and it opens the doors to the most wonderful reads, especially Roger's books from Forum Publishing, of course!

Savage Gardens Affirmation

2011-07-19T09:14:00.001+01:00

This is a song I have listened to on and off for many years, it gives me an awful lot to think about. It may be a pop style song, but I feel that it makes me think about things and makes me a little more positive.

Coping with emotion.

2011-07-19T08:07:00.002+01:00

This post sort of follows on from Kooky's post, we must both have been on a similar wavelength today.

People with CFS have to deal with all kinds of emotions in relation to dealing with chronic illness, theirs and their partners/families lives can be turned totally upside down, which in turn puts immense strain on relationships and mental well being.

Add to this the fact that some degree of emotional lability is not uncommon in CFS and what would normal be small things can upset someone with CFS greatly or make them angry. I think the main base of this is frustration and grief for your former life. Frustrations that you cannot do what you did before and anger as you want to be able to do things. Grief is a strange emotion not just appearing when you lose someone, I find I almost mourn for my old lifestyle, the old Carrie.

This is not uncommon in any chronic health problem and does not make CFS a mental illness such as depression as some believe, it is just part and parcel of the condition and learning to accept your limitation.

I also find that outbursts of emotion, be they positive or negative exhaust me, which adds to the difficulties of coping with challenging times. I try and hide my emotions which in turn make them build inside me and make them more likely to explode at an inappropriate time or in an inappropriate way. It is important that emotions are faced and expressed both in healthy people and those with CFS.

There are also a lot of wasted emotions that eat up valuable energy that is best spent elsewhere, I find this particularly hard to put into practice, emotions such as guilt do not help us in any way yet a lot of people with CFS get the feelings of guilt for not achieving what they believe they should have done. Expectations are usually self inflicted and often unrealistic...

For example I was asked by my Physio to set a 6 month goal to aim for with my rehab physio therapy, I wrote down that I want to be back at work and I want to be keeping my house perfect all the time. I then got a strange look and asked if I thought this was realistic when I cannot walk even the shortest distance without great pain and severe fatigue and quite often struggle to manage it without falling over.

I then felt anger and guilt that I was not going to get back to work in the foreseeable future and left that meeting thinking a goal of walking around a supermarket for half an hour, doing half an hour of light housework and some stretch exercises a day was hardly a goal. Two years on I am still struggling managing to cope with this without exhausting myself and have recently stopped going to the physio as he believes I reached the level he could get me to with exercise alone.

This brought along a lot of tears and a lot of anger from my last appointment with him. I felt hatred towards the physio that he had told me during the appointment that I was not going to get any better, that I had reached my attainable level of activity and this was as good as it gets. I have always maintained that I will get better in time, I don’t know how long it will take, but with these comments and the report from a medical assessment that said it is unlikely I will make any significant improvements in the foreseeable future, left me totally despondent and depressed.

I spent time talking to my husband after bottling up inside and working myself into a frenzy and to Roger who both said I have proved doctors and my physio wrong before and that it would just take time and the right treatment. GET is not the answer to a lot of CFSers problems (is anyone helped by GET?) and that with the changes I am making to my diet, health regime and state of mind (relaxation techniques and meditation) and trying to improve my sleep, there is every chance in time that I will make improvements.

I said 'but I hate the physio for doing this to me and writing me off' and it turns out that hatred is another wasted and even damaging emotion, it builds resentment and anger inside you. It seems it is better to acknowledge that the person you feel hatred towards is just misinformed and someone to feel pity towards rather than anger. Pity uses a lot less energy that hatred which will only destroy you and no doubt hinder any progress you might make.

The question is how do we control our emotions? I think the answer lies in accepting that you feel a wide range of emotions and that it is natural to experience them. The problem lies in how you deal with them. Meditation and relaxation can help calm an anxious or over active mind to the stage that it is slowed down enough to deal with what comes along one thing at once. When your mind is racing at 100mph it is impossible to see what you are thinking and what emotions this is leading to. Slowing the mind and body down lets you recognise the thought processes that happen within your head all through out the day and night if you are not sleeping, and then you can challenge them, sometimes you need help in doing this from someone close to you.

It was only when I stopped and took a step back that I realised all my negative thoughts and feelings and my expectations were all put on me by myself, no one else was doing this to me or expecting me to achieve what I thought I had to. If I had not slowed down, I don’t think I could have spotted what was going on to make me so stressed, upset and angry and therefore could not have dealt with it.

So in summing up, we all have emotions and they must be acknowledged, but if these emotions are unnecessary they can severely drain your energy and cause a spiral of negativity that will hamper any recovery attempts. Slow down, accept your misgivings and be realistic. No one expect you to be super human. If they do, then it is them that have the problems not you.

Success, tenacity and resilience

2011-07-19T06:00:00.004+01:00

Checking my e-mail today I came across this little gem from Jon at Moodscope...

"Success... ...isn't about brilliance - it's much more to do with tenacity and resilience. The ability to keep to your path single-mindedly when distractions are all about you. And the power to spring back into shape after things get bent out of shape.

It's all-too easy to give up when things go wrong. But where does that get you?

Tenacity and resilience will go a long way towards getting you through whatever life throws at you."

This is useful advice for everyone, but it's also something for the CFSer to bear in mind. Some days we all feel like giving up, we're fed up with being worn out and in pain. But if you stay focussed on what you want to achieve, then you'll be that step closer to getting there.

Another thing we CFSers have to think about is our definition of success. Before we got ill success was defined by the usual societal norms; money, acquisition of material things, promotion etc. This changes radically when achievement has to be measured by whether you have the energy to get out of bed today.

And that's such a toughie. I remember vividly how much relief I felt when I finally understood that success could be measured any way that I wanted. Stuff what the rest of the world thought! When I was severely ill success was measured in terms of being awake to eat, as I got better I redefined it to mean I'd achieved by getting up for an hour or so at a time, then getting through the day with out a nap etc.

I built on each success, both literally and in mental terms: because I had achieved, I had given myself the foundation and self-belief to do more. Don't think for a moment that I never faltered, because I most definitely did! Sometimes I didn't want to pick myself up again when nothing went to plan, but just when you get knocked down, success can be defined as not staying on the floor too long. It matters not that you fell, just that you succeeded in getting up again and live to fight another day.

So the essence of today's post is this; firstly, do yourself a favour and redefine how you measure success, it will help you have a better day. Secondly keep on keeping on, persistence and resilience improve your success hit rate.

Vegan gluten free pancakes number 2

2011-07-18T14:55:00.003+01:00

As promised, I managed to find the recipe for the other pancakes I make, I find these tend to be a bit lighter, I like to add sliced banana or dark chocolate chips to it, they are nice plain though with maple syrup or agave nectar.

1 cup Doves Farm gluten-free plain flour

1/2 teaspoon bicarbonate of soda

1/2 teaspoon gluten free baking powder

1 cup rice milk

1 tablespoon oil

Directions:

Sift the flour, bicarbonate of soda and baking powder together in a large bowl.

Add the ricemilk and oil, mix until combined. Do not over mix.

Toss in any extras you might want - blueberries, banana, chocolate chips, etc.

Heat a lightly oiled frying pan or skillet over medium heat.

Drop 2-3 tablespoons of batter into the pan and cover. a pan with a glass lid is best so you can keep an eye on them.

Flip when the middle starts to bubble and cover again.

Keep the made pancakes warm in the oven while you're finishing the others so they don't get cold.

Enjoy!

ROFL

2011-07-18T06:04:00.004+01:00

I was reading through the funny posts on the forum today and there was a joke about a petrol powered dog, it really made me smile. Laughter being the best medicine I thought I'd relate a couple of anecdotes that will hopefully have you ROFL. (That's Rolling On Floor Laughing for those of you who don't speak Internet or Text.)

A couple of years ago I put my back out, just by the simple act of getting out of bed. Those of you with dodgy backs will understand how easy and incredibly frustrating this is. My husband helped me back to bed and made me an Osteopath appointment.

Laying there in pain I remembered the Deep Heat spray in the bedroom cupboard. Called my husband, told him to get the red can from the shelf and spray me liberally in the lower back area. This he duly did, but the blissful heat never came, and the smell wasn't right either. I questioned what he'd sprayed me with as it definitely wasn't Deep Heat.

After a prolonged silence he finally had to confess he'd sprayed me liberally with household flea spray! Worried about OP poisoning we then had to call the vet to find out if I was likely to have been poisoned, you should have heard them laugh. I just know that they call me 'Mrs Flea Spray' behind my back!

Ok, I'm not sure if I should own up to how I got one of my nicknames, but in the cause of amusement I'll ignore my better judgement.

Way back when, there was a children's television character called Basil Brush. He had a long nose, big bushy tail and dressed in a natty red suit. Time passed and I got to discussing past children's viewing with friends and I asked if anyone could remember the Squirrel that used to say 'Boom boom?' My friends looked bemused. Then they looked stunned as the penny dropped.

They gently broke it to me that Bazil Brush was not a squirrel but was in fact a fox. And the natty red suit was what's known in certain circles as 'Hunting Pinks. Talk about embarrassed! I could not believe I'd gone my whole childhood and adolescence without someone explaining such vital information to me. And that's why my nickname amongst certain friends is Baz.

What funnies can you own up to? Share them if you dare in the comments section!

Mocha Fig Muffins

2011-07-18T06:03:00.001+01:00

This is a recipe that I've been meaning to try, but for some reason never got around to it. Mad really, as it looks delicious, perhaps one of you out there would like to give it a go and send me one?!

It's dairy and egg-free, I suspect you could swap out the flour to make it gluten free as required.

Due to copyright issues I'm going to have to link to the recipe rather than reproduce it here, no point getting in to trouble!

Mocha Fig Muffins

Quit day 11, and updates on dad and coping.

2011-07-18T04:37:00.002+01:00

Early morning friends.

I am heading into day 11 of the big quit attempt and am doing well so far still, I didn't have a patch on yesterday and didn't use my nicotine spray at all, I had a few cravings but they soon passed if I occupied myself. I am determined to stick at it, and I feel I don't want the nicotine replacement if I can manage without it, as that is the point I want off nicotine, and 3 months of patches and sprays feels as though I not achieving what I aim to. I can have nicotine out of my body in two weeks if I do it myself, which has to be favourable to over 3 months!

I can't sleep tonight at all, I am not feeling good and every time I lie down I start feeling more unwell and that I can't breathe and feel sick and lightheaded. I would bet my money on it being anxiety so the best thing I could do for myself is toddle back off to my bed and get one of my MP3's on, but stubborn as I am I don't want to go back to bed. I think I will do though, I will have this decaf coffee then take my headphones and go try and get some more rest or I will be no use to anyone if I keep not sleeping.

My dad is still hanging on in there, there has been no change though my mum said he seemed a little worse yesterday afternoon, his breathing was more erratic and bubbly. I have decided to cancel an appointment I have today and go down and see him, it is only an optician appointment and it can wait, I am sure the optician won't be pleased, but to be honest I don't care, my family come first. So I will probably be going down there this afternoon for a while.

I am also still waiting on my melatonin arriving but even though I am not sleeping I don't think I will take it just at the moment as I don't know what kind of effect it is going to have on me. I can't afford to be out of it right now, especially if I get a call in the night to get down to the care home. I did only order them as an emergency measure and I am sure if I stick with the relaxation tracks just now I will be fine, I think it is a combination of anxiety about my dad and anxiety caused by nicotine withdrawl, rather than there being something physically wrong.

It is a wild night tonight, the wind is howling and the rain keeps hammering down, you really would think I was pulling your leg when I am writing this in July, it is more like the middle of November. It makes me just want to curl up in bed and stay there. LOL

Acceptance of one's life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices.
Paul Tournier

Black-eyed pea dip

2011-07-17T06:03:00.003+01:00

Running with my chilli theme, here's another dip that can be easily made and tastes delicious. Whilst it's not vegan, it could easily be adapted. Ingredients

1 can Black-eyed Peas
1/4 whole Onion, chopped fine
1/4 cup Sour Cream
8 slices Jalapenos (or other chilli pepper, to taste)
1 cup grated mature Cheddar Cheese
3 Tablespoons Salsa
Hot Sauce, to taste
Salt and Black Pepper to taste

Instructions

1. Preheat oven to 350 degrees.

2. Drain black-eyed peas and partially mash, leaving some whole if you'd prefer.

3. Add all other ingredients, stir to combine.

4. Spread into a baking dish and bake for 20 to 30 minutes until hot and bubbly.

5. Serve with tortilla chips. Yum.

CFS - A husband's perspective.

2011-07-17T06:00:00.010+01:00

I was kicking about topics for the next blog, and I mentioned to my husband that I wasn't feeling any inspiration. He then kindly volunteered the title and we talked about how he felt about living with a CFSer. We've been together 20 years now, and I've had CFS all the time that we've known each other, but oddly I don't think we've ever talked about how my illness impacts on him. I guess it's just been part of the background until now. Here are a few of my husband's thoughts...

One of the issues that I find most difficult to deal with is the uncertainty of CFS. One moment my wife is fine, within an hour or so she can be completely incapacitated. To me it's just so difficult to predict and there is usually no rhyme or reason to it, although a certain amount of debilitation can be predicted after a late night on a bender!

A month or so back my wife took the car to collect the children from school and nursery, when she left she was tired but not unduly so in CFS terms. 45 minutes later she had to ring me from the car as she wasn't able to get out. Her hands had stopped working and her legs had turned to jelly, she walked like she was drunk. I shipped her in to the house and up to bed, a couple of hours sleep and she was much improved.

One of the things that irks me most is that we are no longer able to sail together. The last time we were on a boat together was shortly before my first daughter was born, 5 years ago. Sailing is something we were both brought up with and such a large part of our lives was taken up with boats and racing. I miss being part of the same team.

CFS does have a lighter side, I find my wife's word-finding difficulties most amusing. It does make me laugh when her sentences go random, and though I do see her frustration, I enjoy the challenge of trying to work out what she's on about. Add two children who also speak nonsense in to the mix and I am kept well entertained!

Day 9 of quitting smoking, and a difficult time for my family.

2011-07-16T09:15:00.005+01:00

Morning friends.

First of all can everyone give Kooky a giant thank you for me, she is doing a sterling job keeping the posts up so that there is plenty for everyone to look at and read, and they're fab.

My Dad took ill on Thursday and got rushed to hospital from the care home he is in. He was allowed to go back to the home as there is nothing they can do. We don't want him in hospital as he gets very distressed and gives up trying to do anything, the staff don’t have time to care for him as the home does, and it is really not ideal. He has very advanced dementia and is not aware of what is happening around him.

Sadly he is not expected to pull through he isn’t opening his eyes and is only taking fluids if fed with a syringe into his mouth. We have come to terms with the fact that he isn’t going to get better and that for him, he is better off if he does slip away as he has absolutely no quality of life. I wouldn't wish dementia on my worst enemies; it is a cruel illness that steals the person’s soul.

Okay doom and gloom over now the good news. I am still managing not to smoke, Thursday I had a rocky period where I thought I can't cope I need a cig. But then realised it was I was hungry, and in the past when I was hungry I often smoked, so I got back to my mums and made something tasty to eat and was absolutely fine.

Yesterday I managed not to use the Nicorette spray at all and barely thought about smoking at all. It is all going well and I am pretty sure that I can do this. I am as strong as I choose to be and anything I set my mind to I can accomplish, (shhhhh now let me convince myself lol)

I haven't got a nicotine patch on yet this morning so I will need to slap one on shortly I suppose, they leave a wonderful red square where they have been and I put it on my chest last night and oh boy, it looked delightful, hehehehe.

I had a disaster with fake tan on Thursday! The plan had been that we go shopping in town with my mum, so I had a shower and moisturised in the hope that I could go out in crop jeans with lovely tanned looking arms and legs. I had some fake tan so was all sounding promising, (you can blame miss Linda for this by the way) so out came the fake tan, sat in the bathroom ready for the wonder of lovely sun kissed legs. Well I am sure as you have figured by now things didn’t go to plan. The more I rubbed it in to stop the streaks being visible the worse it got, I had big thick brown lines where I had rubbed too much and take it right back off, **** and I have just had a shower I don’t have time for another. So there was me wiping fake tan off my legs and feet with baby wipes desperately trying to remove all trace of my bright idea. Fine all gone I can get on with my day.

I was just getting ready to leave the house when my mobile rang and it was my mum asking me to pick her up in town as my dad had been rushed to the hospital. So we got her and dashed up there. I was sat on one side of my dad’s bed and my mum was stood on the other looking after my dad. She looked down at me and said "Carrie? What have you done to your legs?" I looked down and they were a deep red looking very sore and my feet were exactly the same. I must have turned the same shade of red having to explain to my mum in a hospital that I had an accident with a bottle of fake tan!

She then looked at my top half as we were talking and she said "What have you got on your chest? Is that fake tan too?" I looked and laughed and said "no, that is my nicotine patch." She thought I had rested my hand on my chest and given myself a red/brown blob on my chest too. Remind me never to fight with a bottle of fake tan again, at least I didn't look like I had been tangoed! LOL

I will get off and you all have to keep Kooky company until I am around more often again. I am keeping an eye on you checking you're all behaving (!) but I am a little busy and distracted just now.

Stuffed Chillies in Walnut Sauce

2011-07-16T06:49:00.002+01:00

I am a bit of a chilli fan! I grow my own and we eat them with most everything. This is a recipe from the Vegan Society that we like to eat, it's healthy and tasty.

-= Ingredients =-

12 large chilli peppers

Filling
2 small onions, finely chopped
2 tomatoes, chopped
1 tsp cumin seeds
2 oz (55g) cashew nuts, chopped
2 level tsp mixed peel
2 dssp raisins

Sauce
4 oz (115g) walnuts, roughly ground
7 floz (200ml) soya cream
2 floz (60ml) soya milk
2 oz (55g) vegan cheese, grated

1. In a preheated oven (190C/375F/gas mark 5) bake the chilli peppers for about 10 minutes or until they start to soften. Remove from the oven, make a slit in each from top to bottom and allow to cool.

2. Fry the onion until soft, remove from heat and add the tomato, cumin, cashews, mixed peel and raisins. Mix well.

3. With a knife or teaspoon, scrape the seeds from inside the chilli peppers. Carefully stuff them with the filling.

4. Place in an ovenproof dish. Make the sauce by heating all the ingredients together, stirring until the cheese melts.

5. Pour this over the chilli peppers and bake for 10 minutes. Serve with salads, rice or potato wedges. Serves 4

You may wish to reduce the amount of cumin, it's a spice that is not to everyone's taste.

If you are not vegan, then mainstream milk, cream and cheese can be used.

Nature's bounty.

2011-07-16T06:31:00.001+01:00

Time passes, but sometimes it's mighty slow, especially when there's nothing much doing. Inactivity, especially when it's forced upon us as it is with CFS, can be very mentally straining. I'm a great fan of the natural world. Being able to observe wildlife and the weather is one of the things that has helped me keep my equilibrium throughout my illness.

I love the ever-changing weather. There's nothing so dramatic as a gale and rough seas, I like the smell after it's rained, I enjoy a good thunderstorm, the sunny mornings before everyone else is up are beautiful, the crisp cold and frosty mornings where my breath forms clouds excites me.

Nature calms and fascinates me too. I live on the edge of an Area of Outstanding Natural Beauty, from my garden I see fields and the English Channel. (The nearest land from my back garden is South America!)

Thanks to the reserve I get all sorts of wildlife; foxes, badgers and deer can easily be spotted. I'm on a major migration route so we get lots of visiting birds, at the moment the Swallows are particularly busy, collecting insects for all they're worth.

One thing I notice there are much less of lately are the butterflies. We get blow-ins, but the numbers of native butterflies are significantly down from my observations of previous years. Our Budleia was barely visited this year, just the odd Cabbage White. This weekend is the Great Butterfly Count, I fear that I won't have much to report.

I've just started growing my own vegetables. Watching the seeds sprout, then the plants grow, flower and fruit has been a lovely way to mark time's passing, as well as giving me great satisfaction when I can pick and eat it. As well as enjoying the fruits of my labours, I've got a new appreciation for the mini-beasts in my garden, though I wasn't impressed when the slugs got my caulliflower seedlings!

All of the things I've mentioned here are part of what helps to keep me sane (though some would argue with me on the sanity issue!) I may not be able to do as many active things as I once did, but to have these wonders on my back step makes the enforced inactivity weigh less heavily.

What helps you get through your day?

In the mood

2011-07-15T07:10:00.001+01:00

How are you today? Ok? Happy? Sad? Depressed?

For CFSers depression is an added insult, likely brought on as a result of our battles for recognition for our illness, for medical help, for employment rights, for financial assistance and for self-respect.

It's not surprising that because of all we go through, that we become vulnerable to and victims of depressive illness. In my case I suffered because I could not see a way forward. I felt like I was going to be seriously ill for ever. Rollo May puts it well...

'Depression is the inability to construct a future.'

So, how have I shaken off the black dog and rediscovered my future? I've had medication of course, and that's helped, but I had to do some work too. Sorry, the magic pills only go so far! In the main, four things have helped me;

1. Joining a community of like-minded people. Isolation can be so crippling, other people give us a sense of perspective and help us stop feeling alone.

2. Reading about depression and learning new thought patterns. After years of depression you will have developed, as I did, inappropriate thought patterns, negative ones. These can be changed but it takes work and self-belief, it's not an overnight job, but it's worth the effort. I can recommend this book, here I picked it up and put it down too many times, I couldn't quite face what it was asking me to do, but I did it in the end. Try it! (And if you do decided to buy it, please buy it through the forum Amazon link, as you are then supporting the important work that we do.)

3. Learning to like myself. For most of my life I have viewed myself as a failure because I cannot live as others do. Over the past couple of years I've started to be kind to myself and accept that I do have worth. My self-worth is not based on my ability to hold down a job, to run a marathon or have lots of money. I like me and value me, because I am a good person, who tries hard, who cares and who is pleased to be alive.

4. Moodscope. I only discovered this 6 weeks ago. It's a very easy and accurate way to keep tabs on your mood. Each day you log in and flip the 20 cards that describe how you feel. You are then given your result and it's plotted on a graph, so you can see over the course of time how you've been feeling. It's much more objective than your own memory of how a particular day has been and has helped me see that I have more good days than bad ones. And because I can see that I have lots of good days, magically, I have more good days. Try it at www.moodscope.com

And in finishing I would like to add this quote by Edward De Bono

"If you never change your mind, why have one?''

Change your mind today - go on, you'll thank yourself.

Disclaimer: I have nothing to do with either Amazon, Mind over Mood or Moodscope. I could disappear tomorrow and none of them would either know or care!

Houmous / Hummus/ Hummous

2011-07-15T07:08:00.000+01:00

One of my favourite foods is houmous. I have no idea how to spell it, but that's largely irrelevant as I'm really only concerned with eating the glorious stuff!

As well as being delicious it's got lots of good things in it too. It's protein rich, vegetarian and vegan, it is a good source of complex carbohydrates and is high in minerals, fatty acids and amino acids. It also has a GI of about 12 so it should help keep you satiated.

Eat it with raw vegetables such as carrots, brocolli, cucumber and you'll be doing yourself a tasty favour.

Here's how to make it...

15 oz (425g) can chick peas
2-3 cloves garlic, crushed
2-3 tbsp freshly squeezed lemon juice
2 tbsp tahini
2 tbsp olive oil
1 dssp vegan vegetable bouillon
Salt and pepper to taste

1. Drain the chick peas and add them to a blender along with the garlic, lemon juice, tahini, olive oil and bouillon. Blend to a smooth cream. Add a little water if necessary.

2. Season to taste and serve.

And remember that garlic is good for you, so you can up the amount to your taste.

Enjoy!

Day 7 of quitting smoking, updates and learning to say no.

2011-07-14T07:39:00.007+01:00

Morning friends

People with CFS have a hard lesson to learn, saying ‘No.’ Most of us want to please and want to be of use to people especially those we love.

A 'No' uttered from the deepest conviction is better than a 'Yes' merely uttered to please, or worse, to avoid trouble.
Mohandas Gandhi

This is a very wise quote and one people with chronic illness need to learn to accept. If we keep on saying yes to everyone all the time, we are not giving ourselves time to rest and recuperate, and the more we say yes they more likely we are to keep being asked. We cannot blame the asker, we can only blame ourselves for agreeing to help too often.

A lot of people fear being abandoned by their friends and family. Many people do turn their back on sufferers through lack of understand and not knowing how to cope, we can also push people away by fearing people seeing us so ill, or judging us the way that many do.

Being unwanted, unloved, uncared for, forgotten by everybody, I think that is a much greater hunger, a much greater poverty than the person who has nothing to eat.
Mother Teresa

It is important to ensure that our friends and family read and understand what it is like living with CFS and how they can help, for example by letting us rest, allowing us to say no, without being excluded in future events. It is a very hard thing to balance.

Today is day 7 of stopping smoking, and all is going really well so far. I am going shopping with my Mum today to buy my father’s birthday present. He is rather ill so we can only get things that he needs really as their home can’t be cluttered with bits and pieces, so usually clothing and chocolate, chocolate is his favourite thing. I have a few things I want to get so will have to make a list. The problem will be ensuring I remember to take my list with me. I might write it when I am done here and put it into my purse that is saying that I don’t for get my purse LOL

The blog is doing well and Kooky has done some wonderful posts for us, and I really enjoyed Ian’s post: I think we can all relate to the feelings of despair when things seem to improve only for us to be flattened again, it is about pacing and resting, and doing more resting if needed.

I intend on getting some After Eights’s from Poundland if they have them, as they are dairy egg and gluten free and I have been buying Morrison’s own which are lovely, but if we can get the real deal for the same price, I am going to have a look. I also want to go and get some bits from Holland and Barrett, I'd like to look at their dairy free cheeses. I haven’t found any I particularly like yet.

I also want to pop to a couple of other shops for a few bits and pieces and then I could do with going to Morrisons with my husband and getting some more coconut milk. I haven’t much left for making my kefir, though I have had to freeze some as it was maturing faster than I could drink it. LOL

I have my patch on and the coffee machine is burping and farting telling me my coffee is nearly ready and the sun is shining. I am going to go and have a shower and write that shopping list, well… I wont write the shopping list in the shower, that would just be silly, wouldn’t it?

CFS - like climbing Everest in heels.

2011-07-14T07:12:00.001+01:00

I'd like to think I'd been smart enough to think up that title on my own, but I think that I must have stolen it from somewhere else, rarely am I that original!

In a rare switch from my optimistic nature, today I am going to tell you some of my less cheery thoughts on CFS. As the title says, having CFS can be like climbing Everest in heels.

It's a toss-up for me whether the worst thing is pain or fatigue. I hate pain, but at least I can deal with it with medication, fatigue is less receptive to the quick fix. In this age of immediacy it's difficult to grasp that somethings can't just be instantly made better. Fatigue is a symptom that has to be dealt with by acknowledging that I'm in this for the long haul - I don't like that. I don't want to be living this way forever. So I chafe against the restrictions I place upon myself even though I know that I need them.

Another bugbear with CFS is it's invisibility. How can this illness be so debilitating and life-changing with so few external clues? I look ok, ergo, to the rest of the world I am ok. I will be the first to admit that I pretend to be ok, because I cannot easily prove that I am ill to everyone else. It's just plain unfair. If I have to be ill, why, oh why, can't I have something that people know about and understand?

Then there's the inability to think, or speak. I am an intelligent and articulate person. (No, honest, I am!) CFS turns me regularly in to a gibbering idiot. On bad days I cannot hold a sensible conversation, or I unknowingly add random words in to the sentence. It's ok (well, it's not actually) with family, but with strangers it's an embarrassing nightmare.

Lastly there's the twitching. This is my one visible symptom of CFS, perhaps my wish not to have an invisible illness has in part been granted? I hate the pins and needles feeling of the twitch approaching and then my head and neck lurch to one side. It's best not to be sat near me when this happens, so far I've not injured anyone, but it's only a matter of time! I can do nothing about this, and it marks me out as different, when all I am trying to do is fit in.

Wow! That was real stream of consciousness stuff, I actually feel better for sharing it. If you can relate to any of this and want to join a community where thoughts and experiences like this are common place, come and join us on the forum. You're not alone.

Note - I've worked out where I've cobbled together the title from. There's a quote somewhere that says, 'Ginger Rogers did everything Fred Astaire did, except backwards in high heels.'