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.

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.

It's 2011......

The clock has just passed midnight here. 2010 is over and 2011 has begun.

Being Scottish, I've always felt a strong sense of obligation on New Year's Eve. It has to be best night ever, every year. We have to be drunk. Very drunk. We have to be surrounded by people. Lots of people.

I remember the last New Year's Eve that I spent alone. It was the big one. The Millennium. Year 2000 was about to become reality. I had grand plans. I was to be all kilted up and to welcome in the New Year with the girl I was seeing at the time. I had moved to England 4 years earlier and she was American but we were going traditional - spending the night at a beautiful Scottish castle.

Unfortunately, our plans never became reality. She was back in America with her family for the holidays and was involved in a serious car crash that resulted in brain damage. A few days after that, my grandmother had the first of her strokes. And so it was that I welcomed in the Millennium alone in my flat. Plenty of tears were shed and there was much sadness. The sounds of celebrations outside my window only heightened my sadness, my bitterness and my resentment of all that is optimistic about this time of year.

Now, 11 years later, I am spending another alone. It feels very different though. This is all down to choice. I am happy to be alone. In fact, the past two days of my life have been spent in a cocoon thanks to the wonder-drug that is Melatonin. A double-dose gave me the ability to sleep, almost constantly, for most of those two days. To withdraw from the world. To cease all communications. Even with myself. To quieten my hyper-active mind and just let the world turn without me. I must admit, I enjoyed it so much that I am almost loathe to return.

2010 has presented me with plenty of challenges. I got sick. I dropped out of University. I lost much of the ability to care for myself. I questioned most aspects of my self. My values. My friends. My future. And now, as I listen to the sound of fireworks and celebrations outside the window of the tiny room that has become my sick-bay and the scene of most of my days and nights, I am content. Happy to be able to avoid any sense of having to interact but knowing that it isn't rooted in sadness or depression. It is a temporary respite. A recharge. A calm and quiet that will precede my continuing battles - to get well and to help others who are battling the same illness.

Here's to 2011. I enter it a better man than I entered 2010 and a much happier man than I entered 2000. May all your futures be full of abundant hope, happiness and health.

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."

The Future?

I've avoided updating the blog for the past while for a couple of reasons. One is that I haven't been having the best run of 'wellness' and I've been choosing to use my very limited energy on other things. Another reason is that I do not want to keep repeating myself with each post being a recycled version of a previous one.

This isn't always easy to achieve as so much of what I experience, think or feel now that I have a chronic illness is cyclical in nature. Here's a 'typical' week as an example of what I mean:

Monday - I'm going to change the world.

Tuesday - I can hardly change my underpants.

Wednesday - I have so much to be thankful for.

Thursday - This existence is shit.

Friday - I'm not as ill as I think. I need to give myself a push.

Saturday - I can't even make it to the bathroom.

Sunday - Another week has passed and I have achieved the square root of zero.

Hopefully that helps to paint a picture. Life is now a constantly cycling set of emotions that range from positive and thankful to what's the telephone number for Dignitas (that might not make any sense to non-European readers but Google is your friend). And so, although whatever I'm feeling/experiencing on any given day is real and worth acknowledging, I also am aware it is exceptionally transient.

Which brings me on to the main theme of this post and another area that is shifting constantly in my mind. The future.

Almost every area of my life is now up for re-negotiation. There are many ways in which the future might look for me, depending on my health. I could be relatively symptom-free next year, I could be worse (perish the thought) or I could be relatively unchanged. The main areas of anyone's life, in my view are: relationships, career, social life, sense of purpose. All of those areas are impacted by my health. There's a lot of tough thinking ahead of me.

One thing I am becoming more resigned to is that the change in career direction I had mapped out (to become a Social Worker) is unlikely to be appropriate now, regardless of whether I improve or not. Social work, especially in the UK, is a career that is often dominated by high levels of stress, low levels of support from the public/Government and crazily unrealistic targets and workloads. I was always aware of this and it didn't phase me. Now though, I know that my health will likely be unable to handle such stressors and I'd be back to being very ill within a couple of years of recovering.

Another consideration is that I am now fully engaged with M.E. - both in terms of how it is impacting me personally and the stories I hear from fellow sufferers. To be honest, I never gave M.E. a second thought until it hit me. I knew it had controversy attached to it and I even knew a woman who apparently had it. But, like so many of us whilst we are healthy, I shrugged my shoulders, said 'what a shame' and carried on with my life. So, now that I have this new perspective, I'm going to find it very difficult to treat any future recovery as an opportunity to turn my attention/skills/efforts to anything other than somehow supporting those who are in the middle of suffering, despair and hopelessness.

I'm arrogant enough to know that I have a good brain (perhaps less so than before I got M.E. as it has eaten away at some of the sharpness!) and that, whatever I do with my life in the future, I can have an impact. It would seem absurd for me to direct myself anywhere other than M.E. in the future. That has implications in terms of my career options, my earning potential and where I live/work. Everything changes and I may look back on this post in years to come and laugh at my naivety but, for now, I can't envisage using any future recovery to do any other type of work.

The other main factors I mentioned? Who knows? All I can know at the minute is that I am not the same person I was before I got ill and I will probably not possess my old values, concerns or priorities when I come out the other side of this.

Here's to the future my friends :)

Dark Nights of the Soul

I must confess, the main purpose of this post is to try to help me make sense of what I'm feeling right now (4am here!) and to process some stuff that seems to be stopping me from gracefully accepting my current circumstances. That said, I hope this post is helpful to others out there who go through similar dark nights where hope feels like it has gone and where the isolation and frustration overwhelms. Also, perhaps it will serve some purpose to those of you who live with, love or know someone with a chronic illness. An insight into that type of life.

I'm told I'm doing very well for someone so new to chronic illness. That I'm moving quickly through the various uncomfortable phases of having to adjust to a new life. To be honest though, I think exactly the opposite. The people I think are doing well are the ones who have managed to survive this existence for so long. It's simply beyond my comprehension how anyone can live this life long-term. I have massive respect for their perseverence and determination.

Tonight is one of those nights where I can find no peace within myself. I can't see past how isolated, lonely and sad I am. How I am living in what almost feels more like a tomb than a home now. I have people who love me and care for me and I am always so thankful for those people. But, even those who are closest to my heart cannot join me in this. Life goes on around me and it can't all stop just because I am no longer able to take part in it. The irony is, given the choice previously, choosing my own company would always be pretty high up the list of preferences. There was always plenty I could occupy my mind with and I never grew bored of myself. Now being alone has become default rather than choice, it kinda stinks.

Thinking about the future is very frightening. If I am sat in the same place, thinking the same thoughts, a year from now - I'm not sure it's a future I want. I don't yet know what has to change (and I acknowledge I am limited by many factors in terms of what I can change) but the status quo cannot be an option for me. How do I manage to keep a relationship together when our daily existences are already so far apart and when I now have so little to offer? How many visitors will I get in 2011? Probably not many. How old will my nephew be before I can be well enough to enjoy some time with him?

The only people I feel connected to right now are others with chronic illnesses. I'm so blessed to have 'met' some amazing people who are fighting similar battles but they are scattered all over the world and I cannot even make it to the end of my street. In a way, it's a further twist of the knife. There are people out there who I can feel accepted by and who are content to just sit with me in my pain but no amount of emails or virtual chats can equate to the physical presence of someone just 'being there'.

And so, for any readers out there who have a loved one in a similar position to me, my advice would be... just be with them. Give them your support, silently if need be, and your full attention. Make them feel less alone in the world. Forget the urge to distract yourself with TV or chores. Just experience their reality with them for a while. I guarantee it will mean the world to them.

This would usually be the point where I would read what I have written and either delete it or apologise for sounding so sorry for myself. I'm not going to do that this time though. Censoring my feelings to protect others cannot be maintained all the time. I'm hurting, i'm lonely, i'm angry, i'm resentful, i'm feeling sorry for myself, i'm hating the concept of fate and i'm afraid for the future. That is my truth tonight.