From Here ... To Where?

I write this with a growing sense of dejection, with a vastly reduced sense of hope and with an anger I cannot deny.

Those are all my personal feelings and I take complete ownership of them. They are not positive or healthy but they exist.

However, I write this entry on behalf of others rather than myself.

The Whittemore Peterson Institute existed as a beacon of hope for those with an illness where hope and progress had been in short supply. Whether it was foolish to invest such hope in an institution is an argument for another time perhaps. The point is, the WPI represented something tantalisingly appealing for those of us who felt we were not being taken seriously by the medical community.

The events of the past week or so have been extensively documented elsewhere so I will not cover that ground again in this post. What I will say is that I have observed a complete lack of compassion or engagement from the WPI towards a patient community who are desperately sick and who have probably sacrificed much in terms of personal donations and the work required to advocate on the WPI's behalf.

As the week unfolded, I tried to centre myself and put the emotion to one side. This was not easy but I managed to keep quiet about what I was observing.

Other than the sense that the WPI did not value its supporters, I was struck by the reality that they were abysmally lacking in any sort of public relations or customer service expertise. The communications coming from them were either sporadic, irrelevant or downright unprofessional.

Today, Annette Whittemore was supposedly holding a Question & Answer session via Facebook that would also address the questions/concerns that had been emailed to them (I had emailed questions in advance of this Q & A session being announced). What followed was something I can only class as a debacle from start to finish.

Pertinent questions from people who were making their health worse by taking the time and effort to be on Facebook and type out their concerns were ignored. No planning had taken place on how to structure answers or group questions into categories. In fact, it was a poorly thought out exercise that only served to make the Institute look even more inept and insular.

Instead of questions being answered, we were continually threatened with posts being removed if they contravened the Institute's 'social media policy' (whatever that might be) and were treated to the WPI's office manager telling us they were hurt by some of the comments. Forgive my lack of a bleeding heart for your hurt feelings Kellen - I place much more importance on the feelings, and poor health, of those who are now left with unanswered questions and a lack of hope for the future.

The upshot seems to be that the Vivint funds and personal donations were made to the WPI and will remain with the WPI. I am no lawyer so I cannot comment on how that stands up legally.

What seems an altogether different prospect for potential legal action is the VipDx testing that many patients paid a considerable sum of money to have. Annette Whittemore stated more than once that the results of the test had been 'clinically validated'. In light of recent events, I feel quite sure a lawyer could have a field day with this.

In the interests of full disclosure, I am a patient who has donated sums of money to the WPI and I have also invested significant amounts of my rather limited energy to support them via advocacy and voting contests. I am therefore feeling some personal antagonism in relation to this whole mess.

However, my anger is mainly on behalf of those who are much more sick than I am. Those who do not have any quality of life. Those who are too sick to talk or sit up in bed. I suspect a large proportion of those who paid for tests fall into that category as such patients will want to grasp any glimmer of hope for improved health.

A divorce is usually messy and we are often forced to take sides. I am not in possession of all the facts and cannot really comment on who is to blame for us being where we are now. What I can comment on though is how I feel in my gut.

My gut tells me that Dr Mikovits has a passionate concern for the future of ALL patients with M.E. - my gut tells me the WPI do not hold the same passion or ethos. I am deliberately putting the emphasis on ALL - I am sure I do not need to spell that out further. I do not feel valued, respected or important to the organisation I donated towards and advocated for. I therefore cannot justify supporting them in the future, regardless of any promises they make about treatment options.

None of which brings me any further forward in answering the question posed in the title of this entry - From Here ... To Where?

Where Dreams Go To Die

I was asked on a forum what had become of my previous 'dream' of providing a comprehensive manual for others with M.E.

It's a subject I have largely avoided discussing with anyone other than my closest friends lately because I felt a sting of embarrassment at my own initial enthusiasm and subsequent silence. I am a perfectionist by nature and don't cope well with failure.

However, I am presently engaged with some pretty heavy work surrounding my own existence. This has led me to a more peaceful place, a place where I can more readily embrace the uncertainties of life and the uncertainties of M.E. It has led to some 'brave' but scary discussions. Some with others, such as officially ending a 7 year relationship, and some with myself about how I cope (or don't) with being unable to always control and fix everything.

So, I think it's healthy I share my response to that forum post here. My embarrassment and guilt about not being able to follow through on my initial plans are now more tempered by realism and a focus upon getting myself in a good place spiritually before I try to work out how best I can be of service to others.

______

Hindsight is wonderful, as we all know. More importantly, experience is valuable if we keep learning from it.

I think I was the epitome of a relatively newly-diagnosed person who had never really encountered a situation as unexplained as M.E. before. I, rather naively, felt that there must be a way to beat this through brainpower, research and determination. Being skilled at running before I learn to walk, lol, I also decided I must do something for the greater good. I must channel what energy I had into helping others.

Looking back, this was misguided, although well-intentioned. Greater minds than mine have been wrestling with the puzzle of M.E. for many years and it now seems a little foolish to consider I was going to avoid being a statistic and get well again through my own abilities. A very wise friend of mine said to me recently that I would benefit from "stopping being a knower and becoming a learner" - this is sage counsel indeed.

I still have an ambition to do something of real value for others. I just have to be more realistic about how I can best utilize what skills and energies I possess. But yes, my focus has had to shift a little from the community to myself. Not because I have become more ill or because I have become more selfish but because I now realise that I was avoiding dealing with my own lack of control over this illness. Coming to terms with the fact I cannot cure myself and there is no missing formula that everyone else has missed all these years is difficult psychologically.

The past year has been a rollercoaster of emotions for me. I have sulked, I have mourned, I have raged, I have argued, I have spoken my mind when my thoughts still weren't clear and I have argued with and upset people I care about. So much of this seems tied to my own need to accept 'what is' without giving up hope for the future. I am therefore working a lot more on my spirit and considering the more philosophical approaches to dealing with illness.

New Path Awaits

So much to digest since my last update.

Let's begin with the previous post. In it, I very bluntly talked about the future and the fact that suicide was always one of the options on the table. Mostly, this was understood but I feel the need to clarify that I was NOT suicidal. I don't intend to take my own life tomorrow, next week or next month. It's simply the case that it must be kept in mind along with the possibility that I might be permanently unable to take part in life to any great degree. I know there are some people who love me who worry when they see me mention such subjects but I have always taken the view that this blog should be full of raw honesty and I have to maintain that decision. I will, from time to time, talk about subjects that are taboo within society or that unsettle others. That's just the way it is.

My last update also elicited a very interesting conversation with a friend. Let's call her April (not her real name). April was one of those I probably classed in the broad category of 'healthy friends' and my last post expressed how I felt like I didn't exist anymore. April got in touch and was quite angry about the assumptions I was making on the subject. What initially began as two very opposing views gradually turned into a very useful discussion that made me think a lot about my present reality and my future. It turns out that April has been suffering from Rheumatoid Arthritis since October last year, a condition just as incurable as M.E. and every bit as disabling (and probably much more painful). April has also had to adapt to a life where a lot of her independence is lost and she is battling very unpleasant symptoms with an illness that is regarded as chronic.

April takes a very different approach to the one I have taken. She doesn't make her condition public on places like Facebook for example. I, by contrast, have surrounded myself with Facebook friends who are also chronically ill as I need to feel understood, believed and supported. After reflecting for a while on our different approaches, I can see positive and negatives in both. The subject is way too long to get into right now but I will be writing about it in due course as it fits in with some very important decisions I've been making lately.

Returning to the present, today I was visited by my existing Occupational Therapist and an OT and Physiotherapist from the Rehab team at the local council. My existing OT was delivering my new bath chair and the Rehab team were here to talk about how I can have a decent level of independence and keep my muscles from wasting away without risking crashes/relapses.

The bath chair was a shock. Such equipment is very clinical looking and is designed with the elderly in mind more often than not. It therefore is quite difficult to psychologically adjust myself to needing it. It looks very like a stair-lift and operates the same way so it's hard not to imagine one of those TV adverts with the old dear travelling up the stairs with her cup of tea in her lap. However, I tried it out and there is no doubting it will be useful and will allow me to use much less energy when bathing.

The rehab team were focused upon more physical aspects and we have agreed a low-level exercise plan to try for a couple of weeks and see what the after-effects are. I'll probably keep an 'activity diary' so I can measure how much I can do without 'crashing'. I'm also going to get elbow crutches to try as they may allow me to be on my feet a bit more without being in danger of falling over! They also told me about a Community Car service that sounds wonderful. I would pay for it in much the same way as a taxi, and would have to book the service a few days in advance, but the driver and vehicle would be a lot more disability friendly and could allow me to have some independence in terms of GP and hospital appointments etc.

All of this has really lifted my spirits. I am delighted with how helpful and compassionate the therapists have been and I really feel like I have people on my side. I also feel like I have aspirational goals in terms of independence and getting some sort of quality of life back. It feels good to entertain the possibility of escaping these four walls.

A few days ago, I had been at a cross-roads and had made a decision that it would be worth having temporarily increased symptoms if it meant I had some sort of life experience again. So, the support from the therapists are going to fit very nicely with that decision. It might be that my abilities remain pathetically low for a long time to come but it seems important to try and check where my boundaries are and how much I can do. Even having one day of 'activity' each week would be much better than the current situation where I am almost living in bed.

So, a new path awaits. One that will be difficult and will contain setbacks but one that has great potential and that I want to try. I still have to work out a lot of stuff in terms of what I want from my life, healthy or ill, but that can be a work in progress. For now, it just feels important to have a little hope for the future. There are also a couple of 'treatment' options I am considering but I will get into those another time as this post is already way too long!

This is Now

I replied to a message on Facebook and thought it might be useful to put most of that reply 'out there' for anyone who is interested to read as I know my absence from the online world has worried some people.

I think, coming up to the first anniversary of having to lead such a restricted life, I'm finally experiencing the grief of the situation. I think I'm finally allowing myself to be sad, angry and despondent about what my life has become.

That perhaps sounds a little glum but I think it's a stage of the process I missed out originally and it has to be experienced. Does that make sense?

I threw myself into research, into the chronically ill communities, into establishing a strict regime for myself. Everyone remarked how well I was coping and how 'smart' I was at picking up the best approach so quickly. Perhaps that is so but I failed in giving myself time to just reflect and accept and pout and rage. It was all based on logic for me, never emotion.

It's hard to explain to people but I think this is healthy (although it can be mistaken for wallowing or depression). I don't currently have the capacity for any research, community work or the suffering of the world and its population because, temporarily, I am consumed with my own suffering and it's all I can handle.

I have no doubt that I'll be back when the time is right. That I'll be back to being a hive of activity and aiming to support those who are in darkness via my research, my little projects or simply my friendship and compassion. I don't yet know when that time will come but it will come, I'm sure.

So, for now, I don't take in the news from around the world. I'm aware of things (as it's unavoidable) and my heart aches for the suffering caused by what seems like a torrent of natural disasters lately. It also aches for those who are caught in the trap of chronic illness and those who are still having to fight for justice, acceptance and being treated with decency.

As for getting better, my pragmatic approach has mainly been to stop myself getting worse. To avoid doing anything that will cause damage that is more difficult to repair once we understand more about our illnesses. So, I take my billions of supplements and rest, rest, rest. I do not push. I think the 'holding pattern' analogy is completely apt and it's probably the best we have right now.

To those who extend their love and care towards me through messages, pokes or simply thoughts, please know I do appreciate them and I am aware of them. I would hate for my silence to be confused with apathy.

Take care everyone. See you all soon.

Licking The Wounds

Sometimes it's necessary to retreat. To lick our wounds and admit we are fragile.

Lately, I have had to do just that. I had a birthday at the beginning of the month and have gone downhill markedly since then. I am confined to bed much more than I was previously (and even previously it was a lot!), I am unable to take care of my daily 'maintenance' tasks such as washing etc. I haven't had the strength to write to many of those who were kind enough to send birthday gifts and cards. I haven't had the strength to go back to see my doctor or to have the remaining blood tests done. I haven't even had the strength to have a telephone conversation with my own mother for the past three weeks.

I have had to abandon thinking about anyone other than myself. I haven't been able to do any work on the projects I was hoping would benefit the M.E. community and I haven't been able to support fellow sufferers in the various groups I am a member of. I haven't had the strength to take my pills some days.

All of this isn't said to gain any pity. I think there is a larger point I want to make. Actually, there are two, maybe even three!

Firstly, the personal aspect. A lot of my sense of self worth has always been dependent on my output. On what I achieve and on what I can provide others with. I am largely a rescuer by nature - trying to intercept and fix problems. The past few weeks have taught me how damaging that is to my health. I literally have the energy supply of someone who has congestive heart failure and yet I'm beating myself up for not being more supportive of others. That can't be healthy, if you excuse the pun.

Which takes me onto the second, more general, point. For all of you reading this - whether sick or healthy - do you also need to consider whether you are looking after yourself enough? I'm guessing the answer is "yes" for most of you. Please give it some thought as health is so very valuable, I realise that now. And, even if you are sick, the current level of health you have, however low, is also to be cherished and protected. Don't let well-meaning personality traits take that health away.

And finally, the PACE trials that have managed to generate so much worldwide publicity. Why is it that the mainsteam media are able to ignore most of the scandal and the meaningful biomedical research on the subject of M.E. but are so willing to swallow the dishonesty provided by a bunch of UK psychiatrists and a study that any fool can pick apart with ease? I must admit, I lifted my head off the pillow on the day the news hit, looked around me with despair at how widely it was being reported, wrote a grouchy post on Facebook and went back to sleep. So depressing. My guess is that the only way to counter this is to win the PR war. For that is what this is, in my view. The truth has become irrelevant. Most of the world take, without question, what they hear in the mainstream media as gospel. Only by accessing that powerful influencer of the masses will we be able to fight back.

Time to Begin

One aspect of chronic illness that I've already touched upon is a readjustment of lifestyle that, unavoidably, leads to a readjustment in friendships. I'm no longer a part of the same circles as most of my life is now spent indoors and in bed. As is often said though, one door closes and another opens. A change that I wouldn't swap for the world is that I have formed friendships with some beautiful souls that I have come to cherish.

Due to accident or design, a great number of these new friends are Australian and a large proportion are from Brisbane. I am sure I do not need to clarify why that is significant this week. Although I am far away, geographically, from the tragedies unfolding on the other side of the world from me, I am very much closer in spirit. Much of the past couple of days has been filled with worrying about friends who are caught up in the flooding and feeling helpless.

This in turn has led me reflect on what I CAN do. Hopefully those Brisbane residents who count me as a friend feel I am providing something of use with my solidarity and concern and my donations will help the massive clean-up efforts that await the dissipation of the flood waters. But I eventually realised that there is plenty of practical value I can be doing. Not just for the Australians but for anyone who is facing a future with M.E. and is struggling to find quality information or genuine support. Yes, time to roll up the sleeves and get back to work on the project I've been talking about lately.

I've dealt with the negativity already so I won't go back to that again. Let me just say though that I totally understand not everyone will find the end result of this project something they need or want to access. That's fine. Really.

I'm opening up a 2-week 'ideas' stage from now. For those of you who are part of my Facebook circle, I will be in touch there. For those of you who aren't, it'd be really useful if I was able to include you in the updates and if you could email your thoughts on what should be included in any information produced. Think back to the early days of your illness. What do you wish you had known? What did you need that wasn't easy to find? What do you value most about the resources you currently have (practical or people-related).

The email address to use is: ME_Community_Projects@Live.co.uk

A Short Break

I've decided to take a week or two away from my previous activities. This means no blogging, no Facebooking, no developing the Heart Rate Monitor forum and no working on my previously explained 'dream'. All of these are only on hold temporarily though.

I think this break will do me good on a few levels but it's mainly in response to how my previous ideas have been received within the 'community'. I have been surprised, and dismayed, by how hostile and negative some of the private communications received have been.

I appreciate what I have set out is my vision and I don't expect others to readily buy into it. I appreciate some might think it is pointless. I also expect to do the biggest portion of the work myself. I am fine with that.

I understand that this community is made up of people who are sick and might be struggling just to keep their heads above water and that they cannot devote the time or brain power to helping out. I am fine with that too.

What I am feeling angry about is how some have taken what I consider to be a selfless act and railed against it so. It makes me question the motivations of some who are active within this community of ME/CFS patients. I am saddened that the practical attempts to provide support and information, to those who might otherwise struggle to look after themselves in the absence of medical support, has been tainted by the politics attached to this illness and the bitterness of a few individuals. I must process that and it's best done away from being so active online. I don't intend to stay angry or stay away - I just need to regain my balance so that I can continue to move forward with what I still consider a worthwhile project.

To those out there who have been helpful in providing me with constructive feedback and kind offers of help, I thank you a million times over. It is only through pure-hearted and positive action that progress is made and I look forward to working with you all in the very near future.

I Have A Dream....Part Two

Further to my previous post HERE - I want to thank everyone for comments and messages of support left on this blog, within Facebook or via email.

I appreciated when I wrote the original post that my ambitions were grand and that it may well seem overwhelming or impossible. Further reflection, along with your comments, have provided me with more clarity about how this can all grow from such a humble beginning. I think it is important to break down that growth into smaller, more tangible, steps though. So, let's begin!

Lee Lee added some very pertinent comments in the original blog post and I think it makes sense to start with a specific and narrower focus in mind. As the Heart Rate Monitor group is already alive and well in Facebook HERE and in its own dedicated messageboard HERE, it seems logical to build upon this.

The aim, initially, will be to produce a user-friendly guide to activity management for those diagnosed with ME/CFS. This will incorporate the usage of a heart rate monitor but will extend far beyond. Although I continue to recommend the use of a heart rate monitor, I recognise that not everyone can or will use one. I also recognise that those using heart rate monitors need much more information than is currently provided.

Producing such a guide is still a challenge and I still need much help in making it a reality. It is, most definitely, achievable though and it is something that can be of real benefit to the community.

What next then? Well, the first step is to pledge your support by emailing:

ME_Community_Projects@Live.co.uk

Even if you doubt your own capacity to help out, I am sure each of you can contribute in some way. Please do therefore go ahead and email the group to be kept up to date with the plan for the project and how you can get involved. Once I have an idea of how much support exists amongst you all, I can start working on what needs to be done. Let me be clear though - this WILL happen. The less support I garner, the more time and effort it will take me but it will happen.

I end with a plea. Join this movement. Not for me - I am merely acting as a co-ordinator and catalyst - but for the good of those whose suffering we can identify with only too well. Spread this post far and wide and ask others to join this movement too. The activity management guidelines are only the beginning but we must begin somewhere. So, let's begin.

I Have A Dream.... No, Really!

I have a dream.

This could either turn into something magnificent or die a slow death. Either way, I'm convinced it's worth trying to make it manifest.

Fairly recently, I started a Heart Rate Monitor group for those of us who saw the benefit of judging our ability levels based upon what our heart rate tells us. This has resulted in a Facebook group HERE and, more recently, a discussion forum HERE.

My aim with these groups was, and still is, to create a useful resource for the community. A place where information is centrally stored and updated to reflect the constantly changing scientific research in this area. This will continue. However, I am conscious that our heart rates cannot ever be the full picture. For some of us, they serve no useful purpose in relation to mental activity and, for others, they are considerably influenced by prescribed medications, supplements, food and water consumption etcetera.

In my view, there is merit in widening the focus. In taking a more holistic approach to our activity management/avoiding relapses/keeping our bodies as strong and healthy as they can be. This would mean incorporating an awareness of supplements/medication, diet, exercise, how different activities impact our overall health, what activities are particularly stressful for our bodies and how realistic we are about our levels of stamina.

Most of you with ME/CFS will readily be able to identify with the frustrations I experienced in the early days of my illness. Although I consider myself bright and relatively well versed in research, separating the useful information from the nonsense was a difficult task. I can only imagine how much more difficult that is for those who aren't able to scour the internet for information due to ill health or who are instantly discouraged by all the conflicting views on this illness.

This leads me to my dream. Thinking about what I would have valued most in those early days, when neither doctors nor neurologists were providing me with any information or comfort, I envisage a document that includes a collection of relevant scientific data, the collective wisdom of the trailblazing health professionals who are treating sufferers, the sage advice of long-term ME/CFS patients who have already walked the path. Most of this is already out there if you have the time to patiently pull it all together from various sources. When you are scared and sick though, how frustrating is it to have to do it from scratch?

I acknowledge that there are websites out there that already try to serve as a 'one-stop shop' for information and support. What I am suggesting is not at all a new idea. In my experience though, I cannot say I can think of a place that meets my needs in the way I think a regularly updated and streamlined resource could. What I have in mind is not a website but a PDF or similar. Something that people can dip in and out of as required, with searchable, indexed contents. Something that is comprehensive enough to satisfy those that like to voraciously research their new condition whilst remaining accessible to those that only want specific information or can only digest a small amount at a time.

What I am NOT suggesting is that I am going to create my own version of 'How to Cure ME/CFS'. If the greatest scientific and medical minds have not yet reached anywhere near a consensus on how to allow us to recover, what hope would I have? No, instead this would be more like a menu of options. It could contain the various approaches of the leading experts in the field and it could include the anecdotal opinions of the wider community. This would all be provided with the understanding that it offers only opinion/suggestions. It would not be a protocol and it would not preach any single approach.

I am fully aware this is, for the moment, blue-sky thinking. I am also very mindful of my own health limitations and that those involved would most likely have similar limitations. I really do not see that as a reason not to try though. I am already in awe of the talents of many people I have met within the ME/CFS community and I see no reason why that collective potential cannot be harnessed to produce something of lasting purpose and benefit.

Obviously, I cannot do this alone. If it is to achieve the high standards I envisage, it would be no small task. And so, rather than me writing about my feelings or my symptoms or my approach to improving my health, I have decided to write this post. Consider it a call to arms. Consider it an appeal to you all, healthy or ill. Consider it an amazing opportunity to make a real difference. To make this work, it will require the efforts of many people just like you. However little you think you can offer, I am certain we can all contribute. Whether it be a summary of what 'works' for you or a collection of research articles/website links you find invaluable or whether it be skills you have from your professional lives past or present, you can all help make it happen.

In closing, let me reassure you that I am already choosing to overcome the idea that it cannot be done. I would settle for glorious failure before defeatism any day. I do hope John Lennon was right, when he sang:

"You may say I'm a dreamer. But I'm not the only one."

Sensitivity and Purpose

Sensitivity and Purpose. Strange title for a blog post, right? Sounds like a Jane Austen novel ;)

The reason for the strange title is that I want to address two different areas in this one post. Before I do though, I want to thank you all for the comments left after my previous post. It's not always easy sharing the innermost elements of ourselves and I was really touched and inspired to continue by the kind and thoughtful comments you left. Thank you.

So, sensitivity first. I was going to post a long description of the concept of 'highly sensitive' people but I don't think I can do any better than has already been said HERE so please read that first.

All done? Interesting, isn't it? Even though I've always been kinda proud of being sensitive, I've also always felt it was a bit of a burden verging on a character weakness. The truth of the matter is that I've been told more often that I'm "too sensitive" than it being made as a compliment. I now think that is just as dumb as all the times I was told as a child that I "think too much". Now I've read more on the subject of highly sensitive people though, I'm proud to be amongst that group. I should clarify though, this doesn't make me Ghandi. Not by a long shot. I still have moments of insensitivity, of being blunt to the point of unententionally hurting others, of saying the wrong thing at the wrong time, of misjudging the acceptability of my warped humour and of not thinking through my words or deeds.

Aside from those lapses though, being sensitive has lots of positives. Some people are very good in a crisis as they instantly see what practical steps should be taken. Those people are usually invaluable as a friend as they roll their sleeves up and clean up the mess. I'm not really like that. I always think more about the emotional side of a situation. How must the person feel? How can I reach out and show them I am aware of those emotions? How can I be of support? That sometimes leads to the male trait of trying to fix them even if they haven't asked for it but nobody is perfect, haha.

Another positive can be my heightened awareness of 'vibes'. I seem to able to sense unhappiness in others, sense when they need a kind word or an outlet to talk, sense when there is danger in the air etc. Being on alert all the time like this is tiring though.

I'm still working out all the finer details of this sensitivity lark but so far I'm leaning towards accepting and embracing this part of me. It's who I am, for better or worse.

Now, let's move onto purpose!

I'm not someone who is passive. If I do something, I do it almost obsessively and put my whole being into it. Otherwise I just don't bother. So, when I got ill and started to research what might be wrong with me, I knew I wanted to find a way of making a difference somehow. Of fighting for the cause. Especially as ME/CFS sufferers are treated so appallingly by society and the medical establishment (by and large anyway - not always).

I thought about turning my anger and frustration into doing advocacy work but it just isn't me. I have the utmost respect for all the warriors out there who are fighting hard for a fairer deal for ME/CFS patients but it isn't where my strengths lie. My search for 'purpose' therefore continued.

As I've mentioned previously, one of the most significant things to happen to me lately is to gain an appreciation of the benefits of pacing using a heart rate monitor. I am forever grateful to the lady who brought it to my attention and I now embrace the concept wholeheartedly. In the absence of finding a cure, I strongly believe this is the number one way to live alongside being ill. This led me to think about the diffference this knowledge could make to others who are having their activities cutailed by illness. If such a simple technique could free us from either pushing too hard and causing a worsening of conditions or being too afraid to do anything and wasting away it would be priceless.

And so, the 'Pacing with a Heart Rate Monitor' group was born. It's early days still and it will grow slowly but my aim is to create a central information point where the latest research and real-life experiences can be easily accessible.

Click here to join the group on Facebook

Having found a purpose is amazingly beneficial. In my own small way, I can offer some value to the 'community'. Along with providing all the information, I can provide support, encouragement and understanding to others who join the group. I'm very excited about the potential attached to it.

Of course, all this excitement and activity comes with a cost for me. I think I probably have been over-stimulated and over-active in setting this up and being so enthusiastic about it. This weekend my girlfriend's parents came to visit and I was really looking forward to seeing them as they are such amazingly kind and warm people. They have also had their own challenges recently and I wanted to let them know I supported them. Alas, I was too sick to get out of bed and spend time with them. My headaches have returned with a vengeance and my light sensitivity is back so I'm back to staying in the dark and wearing sunglasses indoors. If you read this, Judy and Rob, I'm really sorry I couldn't spend some time with you.

I'll find the balance though, I'm sure, between having a purpose, supporting others and listening to my own needs.

take care everyone :)

Barry