On Monday May 7^th 2012 : The M.E., CFS and Fibromyalgia Recovery Association will launch, bringing with it energy, passion and enthusiasm to inspire, educate and inform everyone affected, those suffering, those caring for those suffering, as well as those practitioners who try desperately to help. This Social Enterprise has been set up by those who have recovered from chronic exhaustive conditions in collaboration with those who dedicate their time to working in the field of recovery.  One of the main aims of this organisation is to change the damaging mind-set around recovery.

The not-for-profit organisation has secured an initial grant from The Big Lottery Fund and awareness days are planned throughout the UK. This is not another support group it is a positive portal where those who have recovered or those who have cared for someone that has, can share information about recovery.  Professionals who work in this field can share and learn from each other and become the collective voice that sings out the fact that recovery can be achieved.

The launch takes place during M.E. Awareness Week (6th – 12th May 2012) where the usual heart-breaking stories will fill the press and media. Experts will be wheeled in to discuss the need for more research into the illusive cure for M.E. There will be the usual discussions about what the differences are between Chronic Fatigue and M.E. and those who are affected by it will once again be exposed to depressing statistics that so often leave them wondering if they will ever regain the precious gift of good health.

This year can be different, this year a new organisation is springing into life bringing with it a clear message; “Recovery is possible”

The launch takes the form of a gala fundraising Lunch hosted by Eminent BBC Broadcaster Nicholas Owen.

Kelly Oldershaw, a founder of the Social Enterprise explained: “We promise an uplifting and inspirational afternoon, where you are part of pioneering a shift in mind-set around recovery!  We only have 300 spaces, and really need to fill this event and we can’t do it without you!! To attend the launch and support the event go to http://www.mecfra.org/ to book your seat. Email any enquiries to info@merecoveryassociation.org . Location: Effingham Park Hotel, Sussex: Tickets £50 per person or a table of 10 for £450.”

One of its founders, Elaine Wilkins who also co- founded the Chrysalis Effect, suffered herself for over 6 years but now fully recovered she states: “When a person becomes ill and can’t find answers they are hungry for an understanding of what is happening to them. There is a lot of anxiety and a crucial need to find answers. This means that the information they find can have a huge impact on how they see their condition. So much information out there is about managing a long term condition. To read this in the early days is extremely damaging. I can remember the impact on my own family when we read in a book written by a doctor that this condition had been described as a ‘living death’.  It is so easy to see how this can set up a mind-set where people lose faith in the possibility of recovery and this has to change.”

Aims of The M.E, CFS and Fibromyalgia Recovery Association

• To provide an informative website that forms a portal for recovery information and provide clarity about  M.E, CFS and Fibromyalgia
• To provide a free helpline for sufferers and carers; manned by those who have recovered or by those who cared for those who have.
• To connect sufferers, carers and health practitioners to those who have experienced M.E., Chronic Fatigue or Fibromyalgia and now feel fully well.
• To provide educational articles and newsletters that focus on recovery not symptom management.
• To deliver conferences by leaders in this field who will teach the ‘what happened’ and the ‘what to do about it’ for sufferers, carers and those who treat these conditions.
• To create an alliance within the government and NHS bodies on the approach to supported recovery and a change in mind-set
• To run trials to demonstrate effectiveness of holistic approaches on recovery rather than Western medical intervention.
• To change the mind-set around recovery worldwide.

Who is supporting this event.
I’ve been working to find ways to help people recover from these very serious and debilitating illnesses for the last 25 years, and so I applaud your passion and dedication in supporting people in learning about their options for recovery.  Phil Parker, The Lightning Process

Recently, journalist Bel Mooney published this Upsetting letter in her weekly column in the Daily Mail newspaper:

“At 20 I should be looking forward to the years ahead with excitement but I simply can’t do that. I have a wonderful partner of two years [we’re still students] whom I want to spend the rest of my life with. We talk of marriage, children, a pet dog. But last year I was diagnosed with fibromyalgia and have felt my condition slowly worsening since.

Already I can’t do many small things and tire out far too easily to do anything particularly active during the day. I can’t help feeling that if I don’t find the right sort of medication or therapy soon I’ll just continue to get worse and worse. Not being able to put my hair into a ponytail [ holding my arms up is too much] will eventually become not being able to wash it myself; not being able to open jars will become not being able to do household chores at all; walking with a cane will become crutches and then finally a wheelchair. I simply can’t bear the thought of having to ask the man I love to look after me. I’ve spoken to him but he hugs me and says I am being daft.

I’ve made it very clear what scares me about the future and he probably knows more about my condition than most doctors. It doesn’t seem to worry him in the slightest, which just makes me feel more agitated. I almost feel he hasn’t really thought about the day to day burden of caring for someone who needs help with everyday tasks. I love him and want to make him happy- which means I don’t want him to wake up in ten years’ time and realise he’s saddled with a useless cripple and can’t escape. I want to be his girlfriend, his lover and his wife one day, not his patient CAT.”

This article exemplifies why an army of volunteers are all working away to launch The M.E., CFS and Fibromyalgia Recovery Association which will set the tone for a new approach that is long overdue.

Book your seat at the launch Today – Free VIP Upgrade - http://www.mecfra.org/

Media Contact:
_____________________________________________________________
For further contact to confirm attendance or interviews:
PR contact: Kate Greenwood, mobile: 07751708116

Thank you so much for your support.
The M.E, CFS and Fibromyalgia Recovery Association Team

Colin Hare is married to Elouise who is working through our recovery programme. Colin has taken on the challenge of running the Leeds half Marathon in aid of the M.E, CFS & Fibromyalgia Recovery Assoication and would really appreciate your support. Here’s why:

My wife had been struggling with her health for more than a year when she was finally diagnosed with M.E/CFS. We were so relieved to get the diagnosis, “at last, we can be told how to fix this” we thought. Despite being referred to a specialist, it soon became apparent that the recommended procedure of pacing was not only extremely difficult to implement, but was not likely to return my wife’s health to normal, rather manage her symptoms. At this stage we began the desperate search for solutions carried out by most new sufferers of this illness. Finding the energy to do this was extremely difficult for my wife, with her illness, and for me, as her carer. From the information we could find, no cure for her condition was forthcoming, and much doom and gloom was predicted for her future.

The downward spiral in my wife’s health limited how often she could leave the house – on bad days it wasn’t physically possible, yet on better days she feared a relapse from doing too much. Since I had to attend to most of the household duties after a long working day, my social life dramatically deteriorated due to lack of time and a sense of guilt for leaving my wife to her lonely life at home. We were also under extreme financial strain since we only had my income. As a newly married couple in our 20’s we wanted to be out and about making the most of life, but the reality was that we were seldom able to even go out for dinner.

The only solace came from the Chrysalis Effect Programme, which suggested a pragmatic approach to treatment, and a positive outlook for overcoming this illness. My wife gradually learnt to come to terms with the illness, whilst gaining knowledge of the most successful approaches to overcoming it. From advice on this programme she has been put on a path toward finding a way out. We now have great hope for the future, and believe that we can overcome these dark times.

The M.E. Recovery Association are determined to educate about the ways to recover from this illness, to prevent newly diagnosed sufferers from entering the depressing mind-set of believing they will never recover and must learn to manage their condition for the rest of their life. This is no way for over 17 million people worldwide to live, when there can be a way out. That is why I’m dedicated to raising awareness of this important charity, and raising money for their cause. For this reason I’ll be running in the Leeds Half Marathon on 13th May on behalf of the M.E. Recovery Association, and would be forever grateful for any sponsorship that can be provided. The long and arduous early morning training runs in the cold, wind and rain are a small sacrifice for the great benefit this charity can bring to the lives of millions.

I would like to support Colin! – Donate Here

It occurred to me the other day whilst I was sipping coffee and watching the birds on the veranda in Antigua (hehe…couldn’t resist throwing that in) that I never really said goodbye; or if not a goodbye (as I know me, and I will no doubt be milking talking about recovery for some time to come) but at least a see ya for now; at least a hey, I’ve finished the programme.

Continued support

Since I last wrote, I have completed the final couple of sessions, which as you would expect, are about bringing everything together; about guiding you on how to continue your transformation to ‘normal’ life; about how to keep supporting the areas of recovery which may need a little extra work.

I liked the fact that I hadn’t been hung out to dry. Imagine: ‘well done on finishing session 40, it’s been great knowing you, goodbye and good luck!’ The offer of continued support if needed, the ideas for continuing the healing journey, the acknowledgement that we are all different and get ‘there’ in our own time, was like one big snuggly security blanket; a blanket you can get out if you ever feel the CFS chill sneak up on you.

For me, I am not sure I am completely ‘there’ yet – not all of me every second of every day (but jeez, who is?) But I am ‘there’ the majority of the time. And my life is simply so much better because of this programme; I feel like getting my pompoms out and giving them a good shake.

Peeling away the layers

It is easy to hope for the magic pill with a chronic illness; the desperation to feel better when you are extremely poorly is all-encompassing, suffocating. But inevitably, an illness which is so complicated and multifaceted does not have a magic cure. But it does seem to respond to a measured, investigative approach; a peeling away of layer after layer of disharmony in the body and mind; getting to the root cause of each facet of your version of this illness.

And my god, I have peeled those layers away – and because I have peeled one layer at a time I think I sometimes forget how much has changed. So please indulge me whilst I show off my last year; flaunt my peeling like Jordan in a bikini, or a desperate wanna be Celebrity Big Brother contestant:

Wow, look at what has changed

I now do circuit training four times a week and yoga once a week (I think I am fitter than most of my friends); I have started a new blog, done my first paid writing gigs, and I now spend about 15 hours a week doing writing related work; I have transformed our apartment into a palace; I have been to Tenerife, Malaysia, Edinburgh, Italy, Turkey, London, Tynemouth and Antigua; I have gone out IN THE EVENING; I can drink wine – moderately; I have been to the theatre, to the ballet, out for dinner, had friends to stay…shall I go on?

Yes, this reads a lot like a normal life doesn’t it? And maybe it is not totally normal yet (I am not ready, for example, to cope with a demanding full-time job) but it is a life which is not dominated by illness. It is my normal for now, and who knows what the future holds as I continue my transformation. I acknowledge that my body has been through a monumental breakdown over a long period, and I accept that my new life is different to my old life (the one that got me in this mess in the first place!), and new is good and exciting.

And yes, I won’t lie to you, there have been a few wobbles along the way, generally when I pick up a bug or a cold, but they come and go within a few days, and I carry on where I left off – I don’t descend into a three-month relapse. Whichever way I look at it, even with the wobbles, my life is completely different now.

What I have learnt

I have learnt so much on the programme and I’m thinking I might like to share some of that with you, it may even give a little nudge of encouragement to your own recovery journey. So, for what it’s worth, in no particular order, here are my favourite take aways:

Adopt a ‘do whatever it takes’ attitude

We are all different and each of our recovery journeys will be different, but we all need the same diligent approach: the willingness to look at recovery from every angle, the willingness to have all the tests to find out what needs fixing on a physical level, the willingness to make the necessary lifestyle changes, and the willingness to face up to our own role in this situation. And Chrysalis provides the perfect, structured way to do this: nothing escapes the nosey magnifying glass on this programme!

I believe!

Somehow, even when it is hard (especially when it is hard) you have to nurture the belief that recovery is possible; this is the foundation of getting better, this is what drives you to keep going. For me this was about not reading any negative information on CFS, moving away from CFS chat rooms were the focus is on living with not getting better from, reading inspirational stories of people who have recovered, and hypnotherapy to keep my subconscious from sabotaging my good intentions.

Nutrition. Nutrition. Nutrition.

You can’t ignore it – ya gotta be good to yourself. You don’t have to be a saint (Green and Blacks people) but for most of us, having a good diet and supplement regime will help (and would no doubt help most ‘well’ people).

Kill the stress

For me, managing stress is absolutely key. I am a stress head and I have worked hard to control this part of me: meditation, hypnotherapy, affirmations, writing a journal and so on. And, learning to live in the moment more has been powerful for me too.

Moving away from the CFS identity

Not talking about CFS and switching the focus of your mind is also fundamental. It’s hard at first, but it pays off – the more you can talk about other things in your life, the more your mind is distracted, and the more your life moves away from being all about CFS; being able to see myself just as Karen, has been a big part of moving forward for me.

It’s okay to rest

Don’t be afraid to stop. It’s easy to associate wellness with a madly busy life, but guess what, normal well people often choose to do nothing; they most likely call it relaxing, enjoying it, savouring it.

Be prepared to go deep

Keep asking yourself the difficult questions: you know the ones, the ones that scare you, the ones that feel too big to think about, the ones that you shove deep inside of you.

Of course, there is more: I could write a book on the last 12 months (ooh…), but I think it’s time to wind up my ramblings, as interesting as they are. But I want to leave you with this: if I can do this, if I can make these changes to my life, then so can you. Because the truth is I don’t have any secret inner strength, I am just a girl, okay woman, doing my best – just like you can.

I am not paid to write these posts, I just write my truth – I didn’t know when I started this programme that this was how it was going to turn out (nor did Kelly when she gave me unsupervised access to the GYLB blog! Or maybe she did; maybe she just had enough faith in the programme…)

I hope my truth can give you hope, maybe even help nurture your own belief in recovery. Whatever stage you are at on your recovery journey, I wish you lots of healing love…

You can read more about my new life at The Reinvention Tour.

I consider myself intelligent, but sometimes I am slow to learn life’s lessons; lessons which seem so obvious in the luxurious position of hindsight. I’m not sure why I can be so slow. Is it because sometimes these lessons are difficult? Is it simply because I am human? Or is it actually because I am not that intelligent after all!

I have learnt many things whilst I have been on the Chrysalis Effect Recovery Programme, but I think this is one of the biggest lessons that Kelly has helpd me get to grips with: after seven years, I have finally grasped why it is important to hang out with the right people (in real life and in the virtual world). When I look back at the mistakes I have made in this area, I feel torn between cringing and laughing at myself.

Mistake number one in all its technicolor glory: joining the local ME/CFS support group.

When I was first diagnosed with CFS I got quite heavily involved with my local support group. Me being me, I didn’t just pop along to a few meetings. Oh no, I became a committee member, organised events, chaired meetings, secured grants, set up remedial yoga classes, wrote the newsletter, and so on, and so on.

I am not sure why I got so involved. Partly, I think I did find it supportive talking to people in a similar situation to me. Also I wanted to help people: some people were very poorly and isolated, and this group meant a lot to them. And I liked doing something productive; I was missing my career enormously at this stage and it felt good to utilise some of my working skills.

As with any group, there was a cross-section of people: some were determined to get better and had a positive spirit, but some seemed negative and appeared to have given up on recovery. But that didn’t matter to me I decided – I was positive enough to handle their negativity without it affecting me.

I became good friends with a few people from the group. One lady had been ill for 10 years, was single and lived on her own – I couldn’t help but feel sorry for her. We used to meet for coffee or chat on the phone, but I would always come away feeling drained; she was definitely a glass is half empty person. But I wanted to support her so I carried on the friendship. And I repeated the same pattern with a couple of other people; I liked the feeling of helping people. But in reality by trying to help others I was negatively affecting my recovery.

But still I carried on. And then I did the craziest thing ever. The Chair Person of the group left and they asked me if I would take over. I did have reservations about doing this. At this time my health was on the up, I believed in holistic recovery and I wasn’t sure that this environment was right for me. But they didn’t have another contender and I wanted to help people who were worse off than me – so I said yes!

Again, I thought I could handle any negative people or ignore any limiting opinions people had about CFS; I thought my positivity created a protective shield that would block the negativity.

I lasted in the role as Chair Person for ooh, two whole weeks! I went to my first meeting and I realised I had made a huge mistake. You know when you have one of those moments that blinds you with the brightness of its light bulb? Well, I had one of those. It was a small comment but it rocked me to my recovery core: we were chatting about exercise and someone warned me to be careful. I am sure their comment was well-intentioned but all I could think is I don’t want to hang round people who have learnt to live with their illness, have entrenched its limitations in their identity, and don’t believe it is possible to improve. I felt terrible but I just knew I had to resign.

I also made an effort to stop hanging out with the people who drained me. Whilst I liked the feeling of helping people, I had to face up to the fact that all the negative energy was having a harmful effect on my well-being.

But apparently going through this was not enough to stop me making the same catastrophic level of mistake again.

Mistake number two: immersing myself in the ME/CFS online world.

When I started blogging I wanted to advertise my blog and attract readers, so I set up a new Facebook account and joined loads of ME/CFS groups. I thought this was the best way of starting out; I thought people who were going through something similar would be interested in what I was writing about. I knew I would come across people who didn’t share my belief in recovery, but again I thought me and my superhuman powers could handle it.

As a result of blogging, I ended up spending a lot of time hanging out in this community. And I met some wonderful and inspiring people. But I also became increasingly exposed to people who didn’t have the same beliefs that I had. And whilst I respect that people are entitled to their own opinions, and that these groups provided a huge amount of support to people, I became aware that spending time in these groups was having an impact on my own beliefs.

My belief in recovery was sometimes fragile, especially when the going was tough. It is a belief that needs nurturing not undermining and I have worked really hard to maintain this belief over the last seven years.

And here is the lesson: however positive you are, exposure to negativity seeps through to your own thinking; I had to acknowledge that people’s lack of belief in recovery was getting to me.

If I was having an energy wobble and went to a CFS chat room for some support, I would get lots of kindness. But I would also get drawn into a world dominated by thinking about CFS, about how hard it is to live with CFS, about how hard it is to recover and so on. That thinking does not nurture a belief in recovery.

If I was having an energy wobble, and instead of seeking support there, I went to a website such as Lissa Rankin’s, who believes in holistic recovery, after half an hour my belief in recovery would be strong again, and I would know my wobble was just a wobble.

The more I learnt about recovery on the Chrysalis Effect Recovery Programme, the more I realised I had to make some big changes to who I was hanging out with – again! I set up The reinvention Tour, I stopped hanging out in Facebook ME/CFS chat rooms and so on.

The truth is, if you hear enough people say you can’t recover, that thought now exists in your frame of reference, however strong you think you are.

So after seven years, and two rather large clangers, I think I have finally got it; whilst these groups may be right for some people, they were not right for me. And as I reflect on what I have learnt as I come to the end of the Chrysalis Effect Recovery Programme, I know the changes I have made in this area were key to improving my health. It also helped me become less attached to CFS as my identity, which has been another big part of moving forward for me.

And of course, although my lesson is directly related to recovery, the principle applies to all areas of our lives. When we hang out with the right crowd we feel invincible – and that is a feeling I like.

You can read more about me trying to grasp the obvious at The Reinvention Tour.

I can’t believe it’s nearly two months since I wrote about my progress on the Chrysalis Effect Recovery Programme. But I don’t want you thinking I’ve been slacking off with my recovery work – oh no. Well, okay maybe a little; sometimes life just gets in the way. I seem to have been really busy the last month or so – well, busy by my standards: I have been away on a wonderful Turkish adventure, I have been putting myself about - with my writing you understand – and I am continuing to turn our apartment into a luxurious and funky palace.

Sometimes I do worry that I am not doing enough towards full recovery, that if I am not overdosing on recovery stories, reading a good self-help book, or absorbing each session in great detail and making notes with different coloured pens, that I am in some way letting myself down. But sometimes I think I need time to consolidate what I have learnt before I move on to the next new topic. Or sometimes I want a break from thinking about recovery in that way, because of course, the goal is to get to a place where I am just living life.

So enough with the excuses, what have I actually been doing? I have worked my way through the sessions, even if I have done them at a slightly slower pace than normal. I have also been having some regular reiki and reflexology, and I have kept up with all the changes I have made to my life since I started this programme.

The sessions have continued to be varied and thought-provoking (I have certainly examined myself under a very large magnifying glass on this programme). Next up since we last spoke was a session on assertion; I have faced up to my ‘people pleasing’ habits, and basically been working on becoming more selfish. For me this about saying no to stuff I don’t want to do, and more importantly saying no without feeling guilty, or without justifying myself. I have found that since having CFS and not being at work, people can treat me as if I’m available all the time and I end up saying yes to fit in with other people’s schedules, or saying yes because I don’t want to hurt someone’s feelings, or saying yes because I feel I should. I am sure family and friends have not always understood why I have said no to something, but I am trying to move on from worrying about what people think all the time, because it is exhausting – and that is something I definitely don’t need.

The next session is about finding your purpose and how to get paid to do something you love. I have done a lot of work on this with Kelly and I know this is key for me. When I stopped working seven years ago I had a big job and I was very career orientated, but as I have spoken about before, I am confident that this way of life did not serve me and was part of the reason I became unwell. And I know on some level I still associate wellness with returning to that way of life, so I know I have to truly believe there is another way to live.

I have worked hard in the last couple of months to begin the transition to a new life as a writer; I don’t even cringe now, or look at the floor, when I say I am a writer. And the great thing about this new life is that it can start now – in fact it has already started – because I can write 10 hours a week, or I can write 40 hours a week.

The programme then moves on to how you can tap into creativity to improve your health. I seem to have wrapped up purpose and creativity all into one (at last a short cut) but of course this may not be the case for you and a creative outlet could be a lovely way of lifting your spirit or re-energising you.

The next session is on resistance and denial. This is a tough session: it is basically asking you to look at what benefits you are getting from your current situation that may in some way be holding you back; holding you in what feels like a safe place. Moving forward and going back into the working world, or whichever path you choose, can be scary. And fear is very powerful at stopping you in your determined tracks, even if you don’t mean it to, or this is on a subconscious level. I know this is part of the story for me, which is why I am working so hard to create a new life I love, one that excites me, one that I want to move towards, one that can beat this fear to a pulp!

Sometimes I don’t feel like I am making enough progress and I get frustrated that I still have work to do. But I do my best to let go of that feeling, to live in the moment (after all I am a peaceful warrior) and appreciate everything that I can do.

And hey, guess what? I did my first paid writing gig – it was such a pitiful amount that it barely even counts as being paid, but let’s ignore that small detail. Let’s focus on the fact that I broke a psychological barrier: I accepted that I was a good enough to be paid to write. Go me!

And go you! Wherever you are on your recovery journey, what can YOU celebrate today? There is always something. Always.

Read more about my adventures at The Reinvention Tour. Or follow me on Facebook or Twitter.

Kelly thought you may enjoy this post that I wrote on my own blog – The Reinvention Tour – a couple of weeks ago. It was a follow up to a post I had written on having a minor meltdown! So here we have it – from ‘Stress Head’ to ‘Peaceful Warrior’:

Oh my, how lovely you have all been sharing your experiences of stress and how you manage it (eating a pint of ice cream or taking seroquel were my favourite suggestions), and giving me wise words of encouragement.

I am glad to report that I am back to my usual chirpy self: the sun is flooding into the apartment, the patio doors are open and I can see the swans gliding elegantly on the canal, my neighbour has just bought me round a plant and a bottle of wine (at 8.30 am!); and I am sipping coffee and writing – life feels good again.

But I am not naive – I know I have not suddenly transformed into a Zen Goddess. And although I am glad I am not a crazy woman this week, I am taking last week as a warning sign and as a reminder to keep working on being a more relaxed person (for my husband’s sake if nothing else – poor sod).

And I often find it is when I have a ‘wobble’ that I learn the most. It is when I pick myself up, reflect on what happened and look at something in a new way that I move forward. I haven’t suddenly got all the answers (sorry if that is what you were hoping for!) but I have reminded myself that I have made serious changes to my patterns of thinking to get to this place of wellness and if I can do that in other areas of my life, I can do it about stress.

I had a coaching session a couple of weeks ago and one of the aims of the session was to explore how can I work with the Type A in me, how can I make her a good part of me and not a dangerous part of me?

‘I don’t want to let go of her’ I said, sounding like a sulky teenager. ‘She is the part of me that makes things happen, I want to keep hold of that drive and determination.’

Kelly gently guided me to imagine a more balanced version of that person (that word balance haunts me); nudged me to see that I would still be me if I let go of this part of me.

She also recommended I watched The Peaceful Warrior. The film – based on the book Way of the Peaceful Warrior – is about a young, arrogant, talented gymnast, who gets good grades, all the hot girls and is training for the Olympics. But whilst on the outside Dan seems to have it all, inside this is not the case. He meets a mysterious stranger – who he refers to as Socrates – who ends up becoming his mentor, showing him a different way to live. This becomes even more challenging when Dan has a serious motor bike accident which threatens his whole way of life. But with the help of ‘Socrates’ he learns to let go of the person he thought he was and start living in a completely different way. (I know it is sounding a little on the cheesy side but sometimes cheese is good.)

It was just what my spirit needed – apparently, a little cheese on a Saturday afternoon is a good thing. And I hope you Type As are sitting down for this part: to be a Peaceful Warrior you have to let go of control. *And breathe.*

And it gets worse – apparently, life is a mystery and you will never understand it. The good news, however, is a sense of humour is also essential to being a Peaceful Warrior (oh, this I can do). And you have to accept that change WILL happen – I think I accept that, so JUST control to work on then.

There was also a focus on how it is the journey that is important, not the destination. (I know this is King of Cheese himself.) I do kind of buy into this but I think the journey is better if you know where you are going – yes, work in progress.

Kelly said to me in our session ‘it’s about letting go, letting go of who you think you should be, letting go of control, letting go of your attachment to the outcome of your goals. If you become attached to the outcome, you believe you will only be happy WHEN…WHEN you have a 6-pack, WHEN the apartment is finished, WHEN you are a successful writer, WHEN…’

So this is it people, I am letting go…you can now refer to me as Karen ‘The Peaceful Warrior’.

You can follow me on Facebook, if you want to that is.

‘What would you be willing to do to get your health back?’ Kelly asked.

‘I don’t know’ I replied ‘but I have just bought some crystals and that seems pretty far out there.’

I think when I started on my recovery road I did the treatments that I was most drawn to or made the changes to my lifestyle that felt straight forward. But at this stage of my recovery game I am being forced to think more creatively; if I truly want to break this cycle of ‘nearly there but not quite there’ I need to challenge myself to explore the areas perhaps I am not so keen to look at.

Maybe this is the hardest part: hardest in the sense that I have had the ‘quick wins’ and now I have to fundamentally change the way I look at my life.

The latest session is an opportunity to review progress and identify whether you have any weak links or areas you are resisting: have you addressed all the recommendations on nutrition, thyroid and adrenals, emotional health, your environment, lifestyle and pace, movement, life purpose and relationships?

So I have been looking for my weakest links. Ironically, I have a new and slightly random entry into first position. About 6 months ago I started getting awful periods and as ridiculous as it might sound they are causing me a lot of problems. The doctor is running tests (please god, don’t let this be early menopause!) and I have been having some alternative therapies to try and help too: Reiki, reflexology and crystals (yup, confirmed – will do anything to get better.)

There is also something around living in the now that I can’t seem to quite get. Even when I feel pretty good I still run patterns of thinking around CFS – usually based on fear. It’s understandable after 7 years, but I know I need to keep working on just living in the moment and creating well persons thoughts.

And another one I can’t seem to get: listening to my body. I think because I don’t believe what my body is trying to tell me. For example, if I don’t feel like exercising is that my body saying I need to take it easy today or is it my body saying it just can’t be arsed? (Body please be clearer in the messages you are giving me.)

I have also been working on my purpose; my new life; my new identity. My strategy used to be I’ll focus on getting better and then decide what I am going to do with my life once I am better. But I have read a lot of recovery stories and a common theme seems to be that people have something they are passionate about which gives them a focus for moving forward – almost a reason to get well. One of the challenges I have had is that my old life was full on and I think I have always associated complete recovery with that kind of lifestyle – even if that was subconsciously – and if that’s the case, no wonder my body has not been in a rush to get back to ‘health’.

So I have created an image of a new life for me to work towards – as a writer – one that excites me rather than scares me, one that gives me a reason to keep moving forward rather than staying in this ‘safe’ place.

And there is something on stress: I am a stress head. I know it is really bad for my health, but knowing it and stopping it appear to be two very different things. This is an ongoing project for me: I could write a whole book on what I need to do here.

Oh and I nearly forgot – my most exciting news of the last few weeks: I have a new blog. This is a big step forward in changing the way I see myself. As much as Sofa and the City was a tongue and cheek play on life with CFS, it still focused on life with CFS. And in the spirit of creating a new life for myself that just focuses on being me I knew I had to say goodbye. I won’t lie it has felt scary starting The Reinvention Tour; I am putting myself out there as recovering from CFS and what if…well, you know all the what ifs. But it also feels right; it is the right step towards being Karen the writer.

So, it’s been busy on the recovery front over the last few weeks. Yes, there is still work to do but as I write all this down it makes me realise how much progress I am making on creating my new life – and that people, feels wonderful.

Sometimes I imagine my situation is similar to that of an addict in recovery; every day I have to work through my steps of wellness or I will crash. It can be exhausting (which I know sounds like an oxymoron!) Wouldn’t it be wonderful to just be able to live? And this is the goal that I focus on every day. I hope that by being honest with you that this programme is not a quick fix, I am encouraging you to stick with your own recovery journey, even when the road is bumpy.

I continue to work my way through the sessions. The most impressive part of the programme is the broad range of subjects it covers; I feel like every possible cause of ‘my’ CFS is being investigated. Over the last few weeks I have looked at pain management, belief systems, nutrition and creating a harmonious space. Each session has pushed me to look deep into my lifestyle and to challenge myself to make the necessary changes.

Session 17 is on pain management. Pain is not a major problem for me. (I used to get really bad headaches but they have improved a lot of over the last couple of years.) But if pain is a significant part of your illness, this session has sound advice for improving your pain levels.

The next session is on beliefs. I have done work on this area before but that doesn’t mean I’ve got it nailed yet! I work on this every day (just like the addict who is working through their steps on a daily basis). The first step is to buy into the fact that recovery is possible; for me this is the foundation to everything I do as I move towards full recovery.

But how many times are you swayed on this belief? When the going is tough I find that I can easily end up in a cycle of limiting beliefs, sometimes without even realising. A couple of rough days and my belief in recovery can be rocked to the core.

And the external influences can be just as damaging: the internet and social networking sites in particular, can perpetuate the belief that recovery is not possible. But people DO recover from CFS and there is no reason why we can’t join them.

I have found that ending my daily journal session with self coaching on what I CAN do; affirmations, hypnotherapy, and not talking about symptoms, (see last post) reinforce my belief in recovery.

The programme then moves on to nutrition. Some of you may remember that I have already done extensive work on nutrition with another clinic. But in my desire to be as open as possible to find the final pieces of my wellness jigsaw, I approached this session with the same rigour as the others. I have also pulled together my nutrition ‘file’ and sent it off to a nutritionist from the programme to review. Meanwhile I am following a sensible eating plan and I take some basic supplements.

Next is the session on creating a harmonious space. Oh, this session sang to me! We are in the middle of turning our apartment into a ‘palace’. We have lived here for about 4 years but we were renting it and all the furniture was our landlords, it was all tasteful but it was not our taste. But the thought of moving or making changes was just too much and so for 4 years we ended up just making do. Then about 6 months ago we decided I was well enough to address our living situation and I started looking for a new apartment. But I couldn’t find anything that I liked as much as ours – with its fabulous location overlooking the canal – and I realised that it just needed some TLC. So we have bought the apartment and we are changing EVERYTHING. We are about a third of the way through the project and the difference the change is already having on me is incredible; I really underestimated the impact of having a space I love. (As I sit on my new purple chenille sofa with my lap top I can easily visualise myself as a successful writer!)

There is also some interesting information on Electromagnetic fields in this session, so I am currently making changes around the apartment to minimise the impact of these EMFs.

So, my recovery friends, I leave you with this: the answers are there, we just need to keep looking for them. Yes, the magic wand would be lovely, but just in case that never arrives, I will carry on diligently working my wellness steps knowing that I am making progress.

And as my husband always says to me: ‘if we plotted your recovery on a graph, (he has an analyst mind!) the trend of your energy line would be moving upwards’. Yes, as a line on a graph I am rocking!

You can always find me at Sofa and the City if you want to read more from me…x

Early on in the programme you are encouraged to stop talking about symptoms, the idea being the more you think and talk about symptoms, the more oxygen you are giving them. This makes perfect sense to me: I believe the mind and the body are inextricably linked. But I accept that this relationship is complicated.

I know that if I focus on positive aspects of my life it is the equivalent of being in an upward spiral. For example, if I focus my mind on feeling well, it tunes into and filters for other information on being well: I may be drawn to more memories of days when I have felt strong and fit; I may carry on with a certain diet plan because I believe it is supporting my health. It is not as simple as if I think positively I will be better. It is because if I focus on those thoughts, I will be open to a whole range of other thoughts, experiences and actions that support what I am trying to achieve.

And of course, the opposite is true. If I am focussing on my symptoms, I can very quickly be on a downward spiral. What is the point of following this eating plan, it’s not making any difference; I may as well eat what I want. I don’t know why I bother with X, Y, Z…I spend all this time looking after myself and I’m still not better…Before I know it I am stressed and not really in the mood to make any decent choices about wellness!
 

So yes, I thought, I can do this. I can not talk about symptoms. How hard can that be? I briefed Husband and Best Friend, as they are the people I normally analyse how I am doing with. I asked them to not to talk to me about my health so that it would be easier for me. And I have an arrangement at home that if I need to rest I just say I am going to chill out. This sounds like a lovely thing to do, not something an ill person would do.

I have made a conscious effort on Twitter and Facebook to not talk about CFS. I was never really one for having a whinge on Facebook or Twitter but I did like to make fun of CFS, which is still indulging it on some level. I have also made an effort to blog about topics outside of CFS. I have found this hard, as I am a thinker and I like processing what is going on for me. And even though I am much better, I am not 100% well, and when I am drafting articles my thought processes are still relative to CFS. Once again – still indulging it!

And I have really struggled with not talking about CFS with strangers, or when making appointments, or when arranging social occasions. I always feel like I want to explain why I can’t do something. I like to be open with friends so they know if I can’t manage a social occasion it is not because I don’t want to be there. And I don’t want people to think that I am ‘just’ a housewife (a career woman’s worst fear), so I want to offer up an explanation of why I am at home.

So it’s not that I want to talk about symptoms ALL of the time but I do SOME of the time. I feel my life doesn’t make sense to people if I don’t offer some level of explanation. And I believe my writing is not authentic because I am focusing on what I can do and not always talking about how hard it is. But I also know that I have to find a way through this because to be a well person I have to think like a well person.

I asked Kelly for some advice on this topic last week and among the many wise words she offered me was this: ‘Karen, you probably don’t even realise this, but you are saying to me your life doesn’t make sense without CFS.’ *Cue big flashes of light bulbs* She is right. I have forgotten how to be just Karen. I have been ‘Karen with CFS’ for seven years; I need to relearn how to just be me (or maybe even become Karen the successful writer!)

And so I am carrying on with my mission not to talk about CFS; I have found my best strategy is white lies. When I am making appointments, or I am in a situation with strangers and the topic of work comes up, I just say I am based at home and don’t go into detail. If I feel a social situation is too much for me I say I can’t go without justifying myself.

It is work in progress and like many aspects of the programme it is about making a sustained change, which takes time.

But just for fun: My name is Karen. I am strong, fit and healthy (maybe even super toned.) And I am a successful writer. Who are you?

You can read more about me not talking about CFS at Sofa and the City

Session 8 this week was on pain. Pain is not something I have experienced often with my CFS. I occasionally get aching legs if I haven’t had enough sleep and I experience some muscle cramps when doing unusual things (whisking eggs and vacuuming are the usual culprits). However I wouldn’t say that I suffer from pain. A lot of sufferers of fibromyalgia say that they would be completely functional without their pain and a lot of CFS sufferers only experience fatigue. Neither is better or worse, and I think most sufferers generally experience both.

It never failed to amaze me when I presented with pain or fatigue at the doctors. Usually they are very concerned as pain and fatigue are the body’s way of making you stop and excruciating pain or fatigue so bad you cannot stand could mean something is seriously wrong. However once you have some normal blood tests and a CFS diagnosis, doctors seem to ignore the pain and fatigue and put it down to CFS.

Now, I am a little more sympathetic to doctors. First of all I think it’s incredibly difficult to get across in a ten minute session just how much fatigue has changed your life, and second of all, I think describing yourself as exhausted doesn’t do the condition justice. The bottom line, though, really, is that doctors don’t know how to treat chronic fatigue syndrome. The reason for this is, I think, because it requires an awful lot of work, time, and a number of different approaches from pacing to stress management to diet to adrenal and thyroid investigations.

I was devastated when I was diagnosed with CFS. It was May the 5^th 2008. I remember the date because I cried for the whole day after. At that point, I knew I’d had glandular fever, which people often have a rough time recovering from (but do recover), and I’d read a bit about CFS and gleaned from various (terrifying) forums that many, many people are seriously afflicted for decades. It felt like a life sentence.

I spent the next few months trying various things that I thought might cure me. I tried reflexology, I tried eating a gluten- and dairy-free diet. I tried cutting out all additives and chemicals. I tried graded exercise (to some degree). I wanted to try LDN but my doctor wouldn’t prescribe it.

It was only really in 2010 that it hit me: there is no cure, but people do get better. The Chrysalis Effect calls this the internal search. I’d been so stuck on the external search – campaigning for a cure, and biomedical research – that I’d not realised that the cure might have to come from within: changing my habits, my personality, my behaviour.

One of the things the programme taught me was that pain and fatigue are often cyclical. I used to scoff at doctors who told me that I was deconditioned. And as my problems started overnight I don’t think it was solely about being deconditioned. However, doing nothing because you’re in pain can often increase the pain due to the muscle memory your body develops. If you do nothing and you are stressed, your muscles will contract, and they will learn to do that every day if you do nothing else. However if you begin moving – tiny stretches in bed if necessary – you are replacing the muscle memory of tightening with movement. The programme is still big on pacing and I began stretching by doing half the amount I think I can. The bottom line is that if your body thinks flexibility is normal rather than inactivity (like a rubber band) the pain may lessen.