Mon's Story of her experience of CFS

My story is:
I’m told I had my first IBS attack aged 5. Every time I found myself in any stressful situation I would end up ill with some sort of abdominal bug. I had gastric enteritis through my exams and had to sit them with a bucket next to me.

I had glandular fever aged 21. It took about 6 months to be free enough of symptoms to go back to work. I worked, got married, had 3 kids, moved area, twice..... and then started to pick up viral bug after viral bug. Alongside I was experiencing some major stressful events and put much of my ill health down to that. I started having investigations in my mid 30's. Finally was diagnosed in 1999 aged 38. I had to stop working.

The initial time was really bad... for about 18 months I suppose. I had panic attacks and emotional breakdowns. Sensitivity to noise and light. (I still can't do energy saving light bulbs.) Sensitivity to foods. Sleeping for 15 hours at a time and still needing naps.

I think the worst of it is the name. People hear ME and think it’s all in the head. It may well be, but not in the psychiatric sense. It could well be viral damage that damages the limbic system of the brain or is causing a general inflammation of the brain.... but they really don't know.
I am certainly not depressed....

They put me on anti depressants... which was a disaster. (GP also suggested I have my kids fostered out!!!! Which I did NOT do.) I spent the next 18 months trying to get off the things using talking therapies and homeopathy.

I was also diagnosed with IBS so homeopathy was used and also a good look at healthy diet.
I saw a German locum doctor who told me that in Germany they give sufferers strong doses of vitamins and minerals and gave me Forceval... which I still take and is very good. (Although within 15 minutes of taking it I feel nauseous so I now take it at night)

My GP encouraged graded exercise.... which was a disaster. Gentle exercise, as in moving all my limbs, is really good but pushing the body to do more than it is able to do, causes my energy packs in my cells to crash and I ended up yoyo-ing between relatively good health and no health at all.

My GP talked about pacing.... listening to my body. If I felt low I was to try and walk round my very small garden. If I felt worse I was to rest more, if I felt better I was to do more activity. To a point this was good advice, although at times I couldn't walk as far as the garden, let alone round it. At better times slowly walking by the sea or along a river is really good.

I was told to keep my mind active (when awake enough to concentrate) and to keep a diary of my feelings, emotions and my nightmares. (My sleep is very disturbed.) This really helped.
I was to write what I felt.... and then pretend a friend was telling me this... and reply as I would to that friend. I realised I was still trying to fit too much in to my good patches.

Home pressures took me back into very part time work, which I really enjoyed and managed for a couple of years, but eventually had to stop again. I started off volunteering in primary schools, and then worked in a corner shop, which was fun. My mind told me I was ready to re start my career. I managed to complete a return to nursing course, but found I couldn’t maintain the role. I also had 3 teenagers to support, both financially and emotionally. Forcing myself to do it meant my body shut down and stopped me doing anything.

My GP tried giving anti depressants again... the old type which have an effect on sleep. I tried it but soon got side effects again so stopped.

Research and internet forums... and the friends of ME support groups have been invaluable. GPs know very little and most of the treatment available through them actually make me worse, so it became really important for me to find out the truth about what was happening to me.

Research can become obsession though and my head can become so confused it becomes counter -productive. Computer glare can cause headaches and brain fog prevents me taking in information effectively and remembering anything I read. Little and often is better than detailed study for me.

There is a lot of confusing and often contradicting research going on. It’s clear that some sufferers out there are using A LOT of money on alternative therapies and are no better. Many out there have found their way to good health though with simple self care and good self management. The Chronic Fatigue Syndrome Forum helps me to keep things in perspective. Others have tried therapies and have first- hand knowledge of the possible pit falls, but also have a good insight into the reality of what the real benefits are.

I moved area and was sent to an ME/CFS clinic.... which was a disaster. The clinic started during the morning, which is my worst ME/CFS time. I ended up an emotional wreck. I'm sure these clinics are good when they fit in with the sufferers' pacing routine.

I was given Melatonin to try and sort out my now awful sleep pattern. This seemed to work for a short time, but I quickly began yo yo-ing between bouts of IBS pain or food poisoning type symptoms and flu type symptoms again.

I was diagnosed with fibromyalgia in 2009, which is more pain based symptoms (rheumatics) after having a couple of car crashes (I wasn't driving). I was also found to have cervical spondylosis. This new diagnosis created a time when GP tried insisting on anti depressants again. They do like to give them out !!! He is still looking for an anti depressant I can tolerate with no side effects. I think I’ll be waiting a long time.

A friend and fellow suffer went on the Lightening Process. £550 for a weekend. It’s not a cure. It’s a retraining. These things are based around Neuro-Linguistic Programming (NLP) among other things. My friend IS doing well and has managed to take an 8 hour a week job. She IS doing much better. I can't afford it though and it another morning start. I FEAR paying out all that and ending up like I did at the ME clinic.

I don't have much faith in doctors now. Not that they wouldn't help if they knew how. They just don't know... science hasn't caught up enough yet to how to treat this condition.

2010 has been one bout of infection after another.....

Benefits don't recognise this condition so ...as I'm married... they pay my pension stamp and that’s it. I can't work though. I get the lowest rate of DLA and I can have a disabled parking blue badge....which is worth a mint on its own.

My husband is becoming exhausted doing lots of hours to make ends meet and keeping up with the things I can’t do at home... and the constant fear is whether he too is could ‘catch’ ME/CFS. Talk of a viral link compounds this fear.

My car is freedom to me. It is a mobility aid, but I have to be careful not to drive when exhausted. Brain fog can easily get me lost (in my local neighbourhood). I organise everything to avoid mornings completely as I know I can't function well then and will get ill if I try.

So now I have accepted that I CAN'T function at the same speed or pace as other people.
I CAN'T just accept medications because I WILL get side effects. BUT I CAN live a normal life at my own pace and speed now I know what they are. I no longer feel guilty that others don't understand or accept my limitations. I've learned to self care and to be honest.... no I can't always help other healthy people out. I know I'm not working but there is good reason for that.
My children have been absolutely fantastic about it all. They provide the best medicine. Meals out and lots of laughter....

My husband (now) is wonderful and very supportive. We both follow 12 step programs which help us both to accept powerlessness over what is happening to us and around us. It’s also helped us to develop a spiritual side to our lives which again helps us to let go of the fear and the guilt.

I began a new therapy in 2011 through a trusted homeopath. I have to travel to get there so I need someone to drive me. The day leaves me exhausted. The therapy used an EIS scan on the first appointment, which for the first time has given me concrete evidence that my body is out of balance. The results are compared to normal body responses showing clearly that my brain is under functioning while other body organs are over active or out of balance. I have homeopathic drops, a diet which avoids dairy, meat and wheat as well as other basic foods and encourages consumption of alkaline vegetables and fish. I don’t cut out foods, I replace them with things I can have. I also have acupuncture and use bio-resonance.

I am finding this useful treatment although as yet, I am nowhere near symptom free, but I am waking up earlier and the quality of my sleep is much better. I’m slowly trusting that I can survive all day now without sleeping. Having my mornings is a new pleasure and I am filling that time (on good days) with using wii fit yoga and balance exercises. I have to remember Spoon Theory though and not go mad and do too much on better days. I can still overwhelm the energy packs in my cells and experience pain and exhaustion. Since starting this treatment though this has not meant a month of crash symptoms. It seems to mean instead a couple of resting days. It’s easy to spend these days fearing the start of a big crash or feeling that the new treatment isn’t working and I’m kidding myself that I have made any recovery at all.

This is when the Chronic Fatigue Syndrome Forum comes into its own. I can get some virtual hugs, but also lots of humour which makes me laugh. It also allows me to remember from those who are newly diagnosed or struggling more than me, that I am actually not as bad as I have been in the past. I can bounce ideas of what’s happening to me and get back sense and perspective from people who know and understand. It helps me to start to put one foot in front of the other again and to realise the bad days do pass and better days are waiting beyond them.

Thank you all for being there x

Mon (iddm)

A member's experience of CFS and how the forum has helped.

This was written by Mrs Mittens, one of our members. She wanted to share her experience of living with CFS and the difference the forum has made to her life and recovery.

Chronic Fatigue Support Forum - How It Has Helped Me

I have endured mental health problems since my teenage years, an eating disorder and depression creeping into my life during my mid teens. However in my late teens I started experiencing debilitating fatigue on top of all of this. I was falling asleep at my desk at work (and much to my amusement would wake up to find post-it notes all around me saying things like ‘When you wake up please could you type this memo?’) I did not have a fraction of the energy of my friends and could not understand why my stamina for social activities was so low.

For the next 20 years symptoms seemed to fluctuate but I still did not have the stamina of my peers, even during good spells and needed a huge amount of sleep to feel even vaguely alert. I was plagued with viruses, colds and felt ill a considerable amount of the time. I was physically sick when really exhausted, and took a lot of time off work because of it. Something seemed very wrong.

During this period I would often visit my GP and ask if they could find out why I was so tired all the time and why stress seemed to exacerbate the symptoms. I had blood tests after blood tests showing that everything was normal and told that it was just a symptom of my depression (despite having good spells of mental health where the fatigue was still present). I just had to manage it best I could which meant lots of sleep, no social life and feeling unwell most of the time.

When I was 38, after a very traumatic event my health started to slide again. My depression was acute and the fatigue became unbearable. In September of that year I went to see my GP. I told him that enough was enough. He really had to find out what was causing this, and I was not going to be fobbed off with ‘it’s your depression’ this time. Blood tests taken, everything seemed normal. Just as I was about to lose my head my GP asked if I had ever considered that I may have Chronic Fatigue Syndrome. No I hadn’t. Which when I thought about it was a little odd as I had two friends with CFS, similar symptoms to me. I talked about it with them, and yet the penny had never dropped that this may also be my problem.

I was sent to the CFS clinic at the local hospital and diagnosed later that year. As I was moving home in the New Year we decided that treatment should wait till I had settled in my new home.

So I moved. My new GP was sent my referral documents. But there was a problem, no CFS Clinic in my area. The nearest was over an hour away and due to the fact that I could not travel it seemed that suddenly I was left with this condition and no idea how to manage it. I was referred to a psychologist for my depression which helped a great deal with my mental health and I also had a course of acupuncture to help with my pain management. The problem was that sorting out my medication and giving me therapy for the depression was all very well but the fact that no-one could help me with the CFS really other than temporary pain relief just kept bringing my mood down. No real quality of life, no job, no social life and a new benefits system that seemed hell bent on making life as difficult as possible for the vulnerable and sick – adding further stress to my life that I really could have done without.

I also had a new psychiatrist who was still stuck in the dark ages and thinks there is no such thing as CFS and that my symptoms were part of my depression (strangely ignoring the referral documents from the CFS Clinic which I had been diagnosed in!). Thankfully after refusing to see this person again I now have a psychiatrist who appreciates that the CFS is real and how it impacts on my mental health. However he still did not know enough about CFS to advise me on how to manage it.

I am not sure why it had not dawned on me before to try and find online support but at the end of February 2011 I thought I’d have a look to see what I could find. The first site I found was Angeleyes40 Chronic Fatigue Syndrome website. Lots of information on the website and so much of it relevant to my life, it was immediately reassuring that this could offer me some explanation of what I was really dealing with and maybe how to manage it better. It also had a forum attached. After reading some of the website I clicked onto the forum.

To begin with I was overwhelmed with the huge volume of information on the forum: I did not know where to start. I browsed the board and was struck by how friendly and warm the forum members were. How familiar and comfortable they all seemed with each other. And the best thing about it was that these people would understand what I was going through.

I registered and tried to add myself in the Introductions section. I came up with error after error and felt despondent that try as I might it seemed that I was not going to be able to talk to these people. I emailed  Angeleyes40 and explained my problem. Bearing in mind that  Angeleyes40 has CFS, runs the forum, her own business plus has a family to look after, she got back to me extremely quickly and after many of my tedious emails fixed the problem. It was only after this I found out just how much  Angeleyes40 has going on in her life, so to say I was grateful for the time she took to allow me onto the forum is an understatement.

After an introduction I started to read some of the forum in more detail. I had gone from knowing very little about CFS to having all I ever needed to know about how to manage it right in front of me. But where to start? As ever the pessimist I wondered how I was going to take in all of this information given that symptoms of CFS include bad memory, lack of concentration and inability to take in new information (and I suffer with all 3 of these), how was I ever going to manage this?

I realised very quickly that any worries or questions needed to be vocalized on the forum. You would get a response very quickly, guidance and support about whatever you wanted to know. Again, from other sufferers of CFS who selflessly give up their precious time to help others in the same predicament.

So to start with it seemed that many of these people cited a change in diet as helpful with alleviating CFS symptoms. But again, where to start with that? As this was the first step I thought I’d take I realized that each section of the board has their own ‘specialists’ to help, guide and support you. As soon as I expressed an interest in changing my diet to see if it helped they started asking me about my diet, advising changes and basically answering all my questions (and there were hundreds – I’m sure that’s not an exaggeration either!). And I got started. The help did not stop there though, the support has been there the entire time (and still is) as I get used to this new way of thinking about food. And even when I’m in a bad mood and feel fed up with it all, they are still there supporting and gently easing me back into the right frame of mind.

One word that is heard commonly when talking about CFS is ‘pacing’. Making sure that you do not over do things each day, doing what you can without pushing yourself too hard. I kind of already knew this mainly because over doing things can leave you in bed for days on end, but I’m not sure it had really sunk in as I still seemed to over do things on a regular basis and suffer the consequences afterwards. So this was the next thing I asked about. Again, lots of ideas and techniques from the friendly forum members which resulted in me getting a gentle hobby that exerts little mental or physical energy but keeps my mind from wandering into the spiral of frustration due to the lack of activity in my life (Painting By Numbers!).

I was diagnosed with Fibromyalgia 2 months ago, again a condition I had no knowledge about and I was instantly fretful and morose about the implications of this. However this time I had the forum to turn to and very quickly I was made to understand that again with the right approach this too could be helped (and thankfully, unlike the CFS, I do have a physiotherapist who is helping me with this too).

And most recently, again with the daily guidance of one of these lovely people, started meditation. Something that I would never have even considered previously but I have surprised myself and it seems to be helping.

And all the help and support aside, there are social pages on the forum which are extremely beneficial for those of us who are more or less housebound. Means we get to talk to other people during the day, not necessarily about CFS but all manner of topics, some serious – many daft! Hobbies, music interests, gardening interests and many more. This also helps you feel part of a community so that you feel comfortable in sharing your thoughts and experiences, good or bad.

I can honestly say that finding and joining the Chronic Fatigue Syndrome Forum has changed my life, and most definitely for the better. The support and advice is absolutely invaluable and I am convinced I would never have learnt half of the things I know now. I have learnt more in the last 4 months than the previous 2 ½ years since diagnosis about CFS and it is all thanks to the forum and its wonderful members.

CFS is a debilitating and difficult condition to manage. And what makes it harder is that with a fuggy mind most days it is hard to retain information and learn about anything really. But due to the forum members providing ongoing support and being happy to go at your own pace, you are gently learning more and more all the time and I am optimistic that this may give me some quality of life again.

There is no cure for CFS, however I have learnt through the forum that with certain lifestyle changes and with the right approach, life can improve for the better. I am not expecting a miraculous recovery any time soon but finally I seem to be moving in the right direction towards better health.

Special thanks to forum members  Angeleyes40, Roger, Queenbeecez and Agapanthus. Remarkable and generous people all of you. And to all the other people I have met who help each other through the day.

Off for my fresh fruit smoothie now, one of my favorite parts of my new CFS regime!

Intro

We decided to open a site here to raise awareness of the forum that we all love and are a part of. It has gone from strength to strength and is attracting new people looking for advice, support and understanding daily

Our aim is to keep you up to date with happenings on the forum and give you an insight into what we do, including our new venture and much acclaimed Forum Publishing, which is expanding rapidly already and raises vital funds for the forum to enable us to keep our lifeline up and running.

There will be various Blogs and articles posted, some will be from myself but I hope that many of them will be taken from members themselves so that everyone can feel a part of what we are doing, as they do on the forum.

We have a page here for the reviews on the Forum Publishing books which have taken us aback, the response has been overwhelming and we can only express our gratitude to those who have purchased the books and left the various reviews. 50% of the proceeds of each book sold goes to the forum fund.

Please visit the Forum via the link provided if you would like to see first hand what we get up to and there is a link to our page which gives information on what CFS is and how it can affect us.

It doesn't stop there, we have branched out onto Facebook so that we can reach more people needing support and that is growing steadily. The response has been fantastic and goes to show how many people need our support and the understanding of fellow sufferers.

Everyone that works behind the scenes on the forum is a sufferer or carer of someone with CFS so they understand first hand the difficulties people face. The work the team puts in is absolutely amazing especially as their energy reserves are often low and they have their own health and families to deal with. Everything from the advice boards to the author of the books on Forum publishing is from people who suffer from / are recovering from CFS.

We also have a channel on You Tube where we put videos that publicise our books and tell you a little about them. The videos are wonderful and created by one of our own members. The whole forum and its ventures are a team effort. Everyone is welcome to come along and become part of our family.

I hope that you enjoy your time with us and feel free to leave comments.

Have fun and stay well,

Chronic Fatigue Support Forum UK.

Forum Publishing You Tube video:- Broken Cats and Cowboy hats

Broken cats and cowboy hats

Hi folks.....

Recently your favourite support forum has taken a new venture onboard, "Forum Publishing", the reason being that we have an author in our midst... Most of you will already know him from his posts on "Pacing" "Meditation" and his section on the forum’s "Mind/Body Interaction" board, along with his more light-hearted posts and his silly sense of humour... Yes, you are correct! It’s Roger...

Recently, Roger has rewritten the second edition of his novel, "Broken Cats & Cowboy Hats", which was originally published in paperback in 2000 and which received a very good review on Amazon as well as an excellent Press review – Roger will be happy to send anyone a copy of the press review on request.

The re-written book has recently been republished in Kindle format by "Forum Publishing", and with Agapanthus’ tremendous help in seeking out typos etc, it is now available to download at the very low cost of £1.71p inc VAT, of which the forum will receive 50p, the hope being that enough copies will be sold to provide the forum with much needed funds.

Kindle books are e-books that can be read via free apps on Kindle Reader, iPhone, Mac, iPad, Blackberry, Android and PC – most people will use the free PC app, which provides a great reading experience and, when closed, will re-open on the last page you read.

For those who like to indulge in a captivating, hard and violent "Crime/thriller” with a message, I highly recommend this book, and for anyone who’s intrigued, here is a short blurb -

"While he’s still a baby, Mark Doughty’s family is torn apart by domestic violence. With his abusive father in police custody and his mother institutionalised, Mark is abandoned to an indifferent care system. Only one concerned social worker, Jackie Shannon, attempts to connect with him during a bleak childhood, but her attentions aren’t enough to prevent him from gradually hardening into a man whose only means of communication is through violence and intimidation. Doughty’s frustration with his dead-end life finally culminates in a brutal and unprovoked murder. His arresting officer, DI Jack Hogg, is pleased to see Doughty put away for life. But his worst fears are realised when Mark escapes from custody, obsessed with exacting retribution on the people he feels are responsible for his incarceration."

This will not be the only book published by Forum Publishing, as in the next two or three weeks, another of Roger’s books, "The Naked Emperor", will be released – this one is much lighter than “Broken Cats & Cowboy Hats” reflecting Roger’s silly sense of humour. Details will be sent to all following its release. And hopefully, others will follow that.

So folks, can you help the forum become more financially stable by buying the book? Then, if you like it as much as I do, can you give it a good review on Amazon, tell your friends and family, and link this book to all your favourite social networking sites, such as Twitter or Facebook? If we can set a big enough ball rolling, it will be of tremendous help in keeping your favourite "Chronic Fatigue Syndrome Support Forum" up and running.

Broken Cats & Cowboy Hats

THANK YOU.

~HUGZ~

Angeleyes40 xx

Forum Publishing

Hi folks....

Forum Publishing is proud to announce the release of Roger's new book, "The Naked Emperor" and again, with Agapanthus’ tremendous help in seeking out typos etc, it is now available to download at the very low cost of £2.13p inc VAT, of which the forum will receive 50% of any proceeds from the book. I hope that enough copies will be sold to provide the forum with much needed funds.

Whilst "Broken Cats & Cowboy Hats" was a hard hitting novel with a message, "The Naked Emperor" is more lighthearted, guaranteed to bring a smile or three along the way...

This book has the full package, as not only does this book deliver humour, there are also a few touching and thought
provoking moments...

Intrigued?

Well here is a short blurb about the book....

"Tired of aggressive, ungrateful customers, hapless motor-cycle repair shop owner, Simon Jones, decides that enough is enough. Encouraged by a newfound ‘gift’, he decides that it’s time to seek a new and better life.

His savvy wife, Hazel, isn’t impressed by his ‘gift’, but agrees that a week’s holiday in Cornwall with the kids, Becky and Ben, and their delinquent golden retriever, Orpheus, would be a good idea, a chance to consider their future.

During the holiday, an incident in a gift shop sparks an entrepreneurial idea, and they return home full of plans to set up a new business.

Initially, the business goes very well but an unanticipated disaster strikes, leading to near bankruptcy.

Desperate for money, Simon has a short spell working in a factory warehouse followed by a longer one as an unsuccessful insurance salesman.

One day he returns home from work, broke and full of despair, to be met by someone from the past, someone who, with the help of the naked emperor syndrome, eventually leads Simon and Hazel to a new life of fame and fortune."

This book is highly recommended as not only has it just been released, there are fantastic reviews on Amazon

Well, what are you waiting for?


For anyone who hasn’t got a reader, this is the answer – click Here to view the free kindle PC app post.

Okay, okay... I hear you telling me to get on with it, now the moment you have all been waiting for, the link to Roger's new book...

The Naked Emperor