Monday, 4 July 2011

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!

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