Saturday, 17 December 2011

A Call For Help

Maria's Story - Click for YouTube vid

We are getting close to Christmas.  A time when many of us spend a lot of money on luxuries.  I am writing this post to ask that you consider directly helping someone in need of something more basic - a home. 

Maria is a Facebook friend who has been dreadfully ill.  I know from my own illness how devastating many of her symptoms can be.  One of the differences between myself and Maria though is that I am lucky enough to live in a warm and safe apartment that is not making my health worse.  You can hear from Maria's video (link at beginning of post), and read from her note below, that she is not so lucky.

It takes great courage to ask for help.  As Maria has said on Facebook: "I am so ashamed to be doing this as everyone I know is just as strapped financially as I am. But I am desperate and maybe this will fall into the hands of someone who is able to help so I am swallowing my pride and posting."

I have counted by blessings and donated to Maria's cause and I hope you will consider doing the same.  I sincerely thank you for doing so.



Link To Donate

Maria's appeal:

clean safe housing critically needed for wheelchair/bed bound young lady

I desperately need safe housing where I can continue my fight against late stage neurological Lyme disease. I am 99 percent bedridden and I live in a very old trailer that is filled with mold and mildew. The bathroom wall is turning to mulch and the floor rotted through to the hall closet. I cannot afford to use the central heat as the unit is antiquated and costs half of my monthly income to run. I have no insulation and I can see the wind blow in the kitchen behind the stove with the doors shut. I get birds inside with the doors closed as well. The electric sockets on one side of the trailer get hot enough to burn when you use them or run the washing machine. I am in a wheelchair and can not fit it in the the bedrooms or the bathroom and I have no wheelchair ramp so I have to scoot on the floor to get out the front door and down the steps.
I have been dreaming of what it would be like to be in a clean house or apartment but I live solely on disability which is less than $700 dollars a month. My hope is that someone will be able and willing to help me with this dream so that I can get well and pay it forward to others in hazardous situations.

Monday, 5 December 2011


Decaying as I am
Need not some promised land
I know that I am failing
Acceptance was their plan

No silence in the sea
Nothing tranquil awaits me
Useless and used up
Too much using to do

I have chosen everything
This is what makes it so bad
No matter what the action
Situation was created by me

My life is different
These gray streets will only get me down
They will never fool me
Integrate me as their clown

(JJ72 - Improv)

Saturday, 29 October 2011

Keep Going Forward, However Slowly

Sometimes, we cannot avoid standing face to face with ourselves. Seeing all that we are and seeing all within us that we cannot celebrate.

Barriers are built strong and high. Feelings are strangled or rationalised to death. Perhaps those barriers were necessary in the past, to protect us from some grim realities we could not safely confront. Perhaps they solidify to the point of lingering much longer than is healthy for us.

Yet, feelings and emotions are colossal forces and refuse to be cast aside completely. They might not enjoy the immediate attention they deserve but they will steadfastly hang around, waiting for their time to scream louder than they originally might have.

When we look within ourselves, we wonder how much of who we are was decided long ago. How much change we can effect. How far removed from the past we can become. How many of the same mistakes we are destined to continue making.

Our backs might feel bent by our burdens. Our memories filled with those we have hurt, those who hurt us and those who touched our lives but are now no longer part of it.

Life might seem to continue to deal us bad cards. Reminding ourselves that there are always others in a worse situation and of the blessings in our lives might sometimes not do the trick. Compassion and gratitude might not always win through.

Ultimately, we must discard any attachment to the notion of fairness. There will never be any solace possible in clinging on to such a concept.

We cannot get back what is lost. We cannot undo the hurt we caused. We cannot travel back in time and alter the past. We are a melting pot of our experiences and our decisions. The dice have been rolled.

The future might be full of fear. The past full of regrets. The will to carry on might be weak. The outlook may seem bleak.

And yet, the path only goes in one direction.

We must keep going forward, however slowly.

Friday, 7 October 2011

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?

Saturday, 1 October 2011

What Can We Ask Of Others?

A friend on Facebook posted this poem today. Often, people post poems or affirmations and they strike me as too sentimental, too Pollyanna-ish or, in some other way, they simply don't 'speak' to my soul. This one was different though and it had a powerful impact.

I'm guessing, without doing any research, that it was written in response to the death of a loved one. However, I was immediately struck by how it applied to chronic illness and to what I have previously written about grief and acceptance.

I truly wish I had known these words when things were really bad for me. When I couldn't get out of bed for months on end and when I couldn't articulate what I needed from others.

Perhaps those who are still facing those struggles will find a use for this poem and can use it to let others know what they really need. Or, perhaps it will simply be a source of personal comfort for them. Either way, it feels worth sharing.

Please Be Gentle

Please be gentle with me for I am grieving.

The sea I swim in is a lonely one

and the shore seems miles away.

Waves of despair numb my soul

as I struggle through each day.

My heart is heavy with sorrow.

I want to shout and scream

and repeatedly ask “why.”

At time, my grief overwhelms me

and I weep bitterly,

so great is my loss.

Please don’t turn away

Or tell me to move on with my life.

I must embrace my pain

before I can begin to heal.

Companion me through tears

And sit with me in loving silence.

Honor where I am in my journey

Not where you think I should be.

Listen patiently to my story.

I may need to tell it over and over again.

It’s how I begin to grasp the enormity of my loss.

Nurture me through weeks and months ahead.

Forgive me when I seem distant and inconsolable.

A small flame still burns within my heart

And shared memories may trigger

both laughter and tears.

I need your support and understanding.

There is no right or wrong way to grieve.

I must find my own path.

Please, will you walk beside me?

By Jill B. Englar

Monday, 12 September 2011

My Story - Published at Becoming Visible 4 ME

I was honoured to be asked to tell my story for publication on the Becoming Visible 4 ME website. This has 'gone live' today and you can find the article HERE.

After some deliberation, I decided to tell my story from a personal point of view rather than by focusing upon a male perspective of chronic illness. Mine is the first story published on the site by a male but I wanted to try to demonstrate that we are just the same as women when it comes to dealing with such massive life changes. The emotional aspects, rather than the physical ones, have primarily been the focus of my blogging and I wanted to stay true to that.

My story was written prior to moving to my new apartment so it is already somewhat out of date. However, it does capture that post-acceptance period of my life where I finally moved forward and decided I must carve out a life alongside my condition.

The site is the brainchild of Dominique, whom many of you may know from the ME online community. The aim of the site is to tell people's stories, one at a time (monthly) in the hope that the stories are shared and a wider knowledge of what living with ME is like can be provided. Dominique is a formidable woman who has herself battled serious illness and who continues to be a driving force within the community with her website and various other projects. I am deeply grateful to now be able to also call her a friend. Please share the great work she is doing by posting the link on Facebook etc.

Take care,

Thursday, 11 August 2011


Wow - such a long time since I have written here.

I shall get to the gratitude part soon, promise. Firstly, just a quick update on my living arrangements and my general level of health.

Last Thursday saw me move out of the house I shared with my ex-girlfriend and into my own little apartment. Healthwise, I am doing surprisingly good since the move - which leads on nicely to the main subject of this post... gratitude!

I was struck today by a feeling of how much I have to be grateful for.

The house move is complete and I am in an apartment I adore. It is such a pleasant place to live, to convalesce and to reflect. Sunlight streams in through the massive Georgian windows, the character and age of the property makes for very satisfying aesthetics. It is quiet, for the most part. Birdsong is the most prevalent sound - so all rather pleasing on the ears.

Today I managed another short walk in the grounds and ventured a little deeper into the undergrowth, leading to the canal. I ate wild berries from the bush and I marvelled at how an area left untended by humans blossoms into something most skilled gardeners would struggle to match. An abundance of supposedly endangered bees were sharing in my appreciation of all the wild flowers that were around.

Sure, the first few nights of living here were strange. I felt very isolated - especially as I had no internet connection. I missed my ex-girlfriend, I missed my cats, I reflected on a 7-year chapter of my life closing. Moving was right for me though. It was right for many reasons. My quality of life is already infinitely better due to having the whole property on the same level. My ability to feel like I can move forward and begin a new chapter in my life has increased too. My desire to be as independent as I can be alongside having M.E. is being tested and satisfied too.

The past few days have been filled with a sense of how lucky I am. My mother has been conscious of me being a little 'needy' during the adjustment phase and has been ringing regularly to chat and reassure me. My postman has been delivering a constant supply of 'welcome' cards and postcards from kind-hearted friends. I have been managing to dawdle around the apartment doing what needs done, slowly but surely. Everything has been positive and has reminded me of the connections, both old and new, I have made with people.

My ex-girlfriend has dropped in since the move. We were able to chat as friends, effortlessly. Of course, I am sad that the relationship is over but I had already done the grieving part of that prior to the move. Now comes the acceptance and the joy in knowing we will always be friends and that we can happily spend time together.

And today, I received a visit from an old friend. I surprised myself by being able to engage in conversation for 4 hours. We put the world to rights, shared memories and laughs and had tea and cream cakes.

It was wonderful to be able to catch up with her but it also gave me a sense of confidence in the future. That I can carve out a bit of living amongst being sick. I have been very cautious with my health since I got ill, scared to trigger any flare-ups for full-blown crashes.

Now, I think it's time to cast off that caution and replace it with a more balanced approach. To be sensible and careful but to make sure that my life also includes a connection to the outside world. I have felt trapped in a bedroom for the past year or so, partly due to my own choices, and it's time to give more focus to the freedom I can allow myself. I may never be the person I was before M.E. entered my life but I am okay with that. I can live with the uncertainty and the lack of control I have over the outcome.

Much to be grateful for :)

Sunday, 5 June 2011

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.

Wednesday, 1 June 2011

Boring Science Stuff or Political Intrigue?

I am an absolute dimwit when it comes to science. With that disclaimer out of the way, let's talk about science.

The only one story in town right now for the M.E. community is that Science journal asked Lombardi et al to retract their seminal paper on XMRV and the potential link to M.E. The journal also published and Editorial Expression of Concern. Thankfully, Lombardi et al have categorically refused to retract.

Did I mention I was a dimwit when it comes to science? Never hurts to re-emphasise the point. However, even this dimwit can see the absolute logic in what Dr Deckoff-Jones had to say HERE:
"It can't be both a contaminant and not there at the same time. Which is it?"


You can read Dr Deckoff-Jones' frank and unflinching views on what's going on in the link I posted above. As always, she shoots from the hip and doesn't mince her words. I admire that.

For a while I've had the dilemma of which organisation to support with donations and who to root for in terms of hopefully one day finding a cure so we can all have our lives back. This has now become irrelevant for me. It is no longer about whether the WPI are our saviours or whether XMRV will be the big breakthrough that leads to meaningful treatment. It is about the little guys with good intentions being bullied by the powerful.

The consequences of the WPI being 'taken out' are significant. This goes way beyond the money Annette Whittemore has ploughed into the Institute and it goes way beyond our illness. Even this dimwit knows that science is full of cases where the original discoverer is discredited and marginalised to allow someone else to end up taking the credit (and making the money!) for the discovery. I believe this is what we are witnessing here.

All of this makes me all the more determined to support the WPI. Whether they can cure me or not, this has become a matter of principle too great to ignore. I hope others feel the same way.

Thursday, 26 May 2011

Life - Finding Meaning and Maintaining Ethics

The title of this post is rather wordy but it reflects what is occupying my mind most of late. I was reflecting on the fact that, this month one year ago, I was submitting my essays and sitting exams in the first year of my Social Work degree. I was very happy with the marks I attained, even though I was really struggling to function towards the end of my writing and during most of the exams. One of the essays I scored highest on was a piece I wrote on Values and Ethics. A subject that I initially found frustrating but that I gradually grew to be fascinated with. As it links in to what I want to write about today, I have posted a copy of the essay for download HERE.

The essay is very focused upon a social work perspective and that, combined with an exploration of the ethical models of Aristotle or Kant might not be of interest to many people. I wanted to provide context in addition to what I'm writing now though and it is another indication of how different my focus was only one year ago. And yet, how I'm almost wrestling with the reality this very day.

I appreciate this might all seem confusing and opaque so far. My apologies. I mentioned in a previous post that I felt I was standing at a cross-roads in respect of so many things lately. Decisions I make and actions I take will change my path. Returning to values and ethics, I guess 'consequential-ism' is a good word for what I mean. Everything I think and do has a consequence and leads me somewhere (and also leads me farther away from places/people).

The support of the physiotherapist and occupational therapist had given me a boost. A very welcome one. It also creates consequences. My initial enthusiasm about the delivery of the elbow crutches created a faulty sense of what my life would be like from this week onwards. I would be out and about with my crutches, no longer housebound. Well - no. In reality, I still cannot stay standing up for longer than a few minutes. Crutches aren't going to fix that.

I also fear I might become a measure of success for the therapists. Will they be judged on whether they can make me 'better'? Already, one of the therapists has suggested CBT and normalising my sleep and waking hours and activities. Unfortunately, it isn't so simple. I must sleep when I cease functioning (or at least rest by staring into space and laying flat) and that cannot be dictated by a clock. So, dilemma number 1: Am I helping or hindering myself by engaging with a Rehab team? Am I being defeatist and negative by not trying to fit in with 'normality' in terms of rest periods and activity etc?

And now we return to values and ethics (it is all linked, I promise!). What the hell am I to do with my life? This question keeps coming back into my mind again and again. I am struck by there being some wisdom in stopping focusing so much on illness. Yes, I am unwell and, yes, my abilities are much decreased. But is focusing on this so much 'healthy'? Is surrounding myself with others who are focused on their illnesses too 'healthy'? Then there is the opposite side of the argument. The wrestling with ethics. Now I've become aware of the suffering that goes on amongst people I've become close to, now that I've been given glimpses of their everyday struggles, how can I ethically say that I should spend less time focused upon illness? Shouldn't I ethically be spending whatever energy I have in trying to find ways to make a difference in people's lives? So, dilemma number 2: Should I focus less on my own illness and/or the illnesses of others or should I devote more of myself to helping others?

These things are best in threes, apparently, so I'll also mention the next thing I'm toiling with. How do I find a balance between acceptance and trying to get better? I strongly sense (and others have suggested it to me) that acceptance is something I am struggling with. For me, acceptance means giving up and consigning myself to being ill forever. My instinct is to keep researching, keep trying new treatment ideas and keep aiming to protect what function I currently have. Again, there are consequences to this. Life is passing me by. What if I just accepted this is what I'm currently like and tried to carve out some sort of life for myself to work alongside my limitations? So, dilemma number 3: How can I make peace with my current lack of health and still retain a desire to get better?

If you have reached this point, I applaud you. This will not be regarded as one of my more coherent posts. If I have confused you, I apologise. Confusion reigns supreme for me right now and perhaps putting all this 'out there' will bring some form of clarity or elicit some form of sage advice. Worth a try!

Thursday, 19 May 2011

Why Don't the WPI have more votes?

Something is bothering me and I want to share it.

As those with chronic illnesses who read this will no doubt be aware, the Whittemore Petersen Institute (WPI) is shortlisted for a Chase Community Giving charity award. That award will be based on how many votes the WPI secures via Facebook and the amount can be up to HALF A MILLION DOLLARS.

Let's go back a step though. In becoming part of the online community of people with ME or CFS or whatever we define it as, I see active communities running into the thousands in terms of numbers of members. One desire seems to unite us - a desire for robust biomedical research to determine why we are sick and how we can be effectively treated/cured.

I'm sure you know where I'm headed with this post. Along comes a financial institution who is prepared to give up to HALF A MILLION DOLLARS to fund this research. And all we have to do is click a few buttons on Facebook and vote.

So here's what bothers me. The first round saw the WPI collect a decent enough number of votes but a tiny amount when you consider how many people are active on Facebook and have a vested interest in ME/CFS and in helping find a cure. The second round started today and we are struggling to stay in the Top 10. We are being beaten by a marching band!

It's all well and good us trying to gain votes from our friends etc but, really, votes purely from that online community I keep mentioning should see us storm this contest and bank HALF A MILLION DOLLARS.

I know I'm preaching and I know we are all sick but really there can be no second chance for something like this. We will regret it for years if we do not squeeze every cent out of this charity award. HALF A MILLION DOLLARS (last time, promise).

Anyone who reads this, the message is simple. Vote. Please. This isn't X Factor or American Idol and this isn't some lame popularity contest. This is the potential for people to get their lives back.

Full instructions below. Oh, and please don't let the 'unsecure connection' warning put you off. Nobody is going to steal your identity during the 2 minutes you use a Facebook app to vote.

Thank you.

STEP-BY-STEP Instructions:

1. From your Facebook page, go to Chase Community Giving:

2. "Like" Chase Community Giving by clicking on the "Like" button.

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

4. Cast your vote for WPI by clicking the "Vote Now!" button.


The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of their innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of their 10,000 sq. ft. medical facility. Here they will engage in revealing clinical trials and provide onsite care to those who are unable to afford care. The WPI require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these underserved populations.

Wednesday, 18 May 2011

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!

Friday, 6 May 2011

A Year of Illness

*warning - extreme honesty in this post, including exploration of suicide etc - do not read if easily offended/upset by the subject*

I've put off writing this post for so long.

Last month saw me reach the depressing milestone of being ill for 1 year. Now, before I go on, I should state that I know people who have been ill for 30+ years and I know people who have been ill since childhood and have never been able to take part in life much at all. In no way do I compare my situation to theirs. I'm new to all this in relative terms and I luckily still have pretty good cognitive functions and have memories of good times to keep me company in the endless days of nothingness.

However, I cannot ignore the fact that 1 year of illness feels very different to 11 months. Even if the reality is not much different. I guess it's kinda like the psychology of how an item is priced at 9,99 rather than 10.00. I always thought this would be temporary. Sure, I knew there was a possibility that I'd be sick for a long time but I don't think I really had that mindset. I was going to do everything I could to get better and then get back on with my degree and my future. I was going to go back to having holidays and spending time with my precious nephew and all the stuff I thought were just temporarily on hold. Now, a year later, it all feels like a distant life led by someone who isn't even me.

And it hurts. It hurts so fucking much. On days where I'm clear-headed and aware, I have philosophical debates with myself about suicide. Nobody knows what the future holds (which is just as well, really!) and I might be well again one day soon. I might be relatively functional again in the near future even if I don't recover. Or, I might be like this forever. So, I choose to retain control over this part of my life. The part about when and how my life ends. It's a controversial subject and I respect that but this is MY life and it will be MY choice.

I have explored two options. One being the Dignitas route and one being the 'do it yourself' helium method as used in the early days of Dr Kevorkian's work. Talking about this subject openly is impossible without having to soothe or reassure others who care about you, of course. So, I should clarify a few things. This is calm, rational and pragmatic and is based upon the possibility of me reaching my limit AT SOME POINT in the future. This isn't something I'm planning for next week. Also, this isn't something I'd even consider when I'm at my lowest. People can believe me or not but this isn't depression talking. I promise all those who might worry about me discussing this that I will not be doing anything drastic or rushed. If it reaches the point where enough is enough, it will be planned and everything will be put in order. But I retain my right to decide.

To any of my non-ill friends who still read what I write, I'm keen to know why you no longer have anything to say to me. Did I stop being fun when I got ill? Do you not believe i'm really ill? Are you bored of me talking about illness? Is it easier to avoid the whole subject and just ignore it/me? I doubt I'll get a response to this but I'm curious. Because I feel like I don't fucking exist anymore.

And so, what was originally going to be a reflective piece about the year of illness and all my learnings has turned into a rather different beast. I make no apologies for allowing my uncensored anger and despair to have a voice today but I appreciate anyone who has the love, curiosity or fortitude to 'listen'.

Monday, 14 March 2011

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.

Wednesday, 23 February 2011

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.

Friday, 28 January 2011

Illness and Politics

My last update delved into politics. It was a move away from my usual blogging topics.

This update is asking for less politics. Especially in relation to the millions of us who are ill and caught up in political storms.

I am utterly pissed off with the politics and sniping that accompanies my illness. Yesterday, the Medical Research Council (an independent UK body that decides which research proposals will receive Government funding) made the almost unheard of decision to ring-fence £1.5m for the biomedical research priorities that the working party had identified. Note - biomedical... not Cognitive Behavioural Therapy or Graded Exercise Therapy!

The announcement was met with, on the most part, scorn by the 'community'. £1.5m isn't nearly enough - this is an empty token gesture - blah blah. Now, I know the sum involved isn't huge. But for fuck sake people, it's an almost unique scenario. Never before have I heard of the MRC giving such special treatment to specific research proposals. Change has to start somewhere and isn't always massive initially.

Then we have the two camps still bickering about whether XMRV is THE key or whether it's a load of bunkum and the fight should all be about separating M.E. from CFS. For ordinary idiots like me, I read one side of the argument and decide it makes sense. Then I read the opposing side and change my mind.

I'm ill. All I can know for sure is that I'm ill. I want to be made better. I want to be cured. In the absence of that, I want to exist in as positive an environment as possible and to provide support free from politics for others who are ill.

Why couldn't I have got a disease that wasn't so bloody political?

Monday, 24 January 2011

A Little Bit of Politics

Time for another confession. Politically, I used to be a very silly little boy. I used to delight in being contrary and reveled in shocking those around me with my right-wing solutions to all the problems of the world such as everyone having to be euthanised at 60 to create room for younger generations and bombs being dropped on the worst housing estates to wipe out poverty the easy way. I say none of this with pride. If I were faced with such an idiot today I would pity and detest him.

Probably for much the same reasons that I supported a Catholic football team when amongst a family of Masonic Protestants, I became a 'fan' of right-wing politics. I was one of the few Young Conservatives in Scotland. I saw every problem as being solvable by the free-market and by the eradication of the weak links. What a prize fool I was.

Although I'm still guilty of many foolish moments in my life, I have thankfully grown up politically. Like many others in the UK, I was intrigued by the rise of Nick Clegg and the new life that suddenly seemed to encompass the Liberals. I was so fed up of being told how to live and think by New Labour that I was looking forward to seeing what the Coalition did. I saw a future of potential freedoms that had been so eroded under the Nanny State of the late 90s and the early part of this Century.

Now I look around me in horror as savage axes are wielded in every direction. I have to acknowledge that I look at it from a new personal vantage-point as I am not currently in a position to study or earn a living. I am vulnerable. I am needy. I am dependent.

This really is not what Liberal voters signed up for. At least I hope not. What we are witnessing has long-term consequences that should make us all, whether we are currently wealthy or poor, healthy or ill, a political Blue or Red, think long and hard about where we are headed.

We must consider what sort of society we want to create and maintain. How should we treat those who suffer misfortune through ill-health, poverty or bad luck?

The targeting of the needy rather than the greedy has dire implications for what society will become. Will we return to a 'me, me, me' culture? Some might say we've never left it but everything is relative. Labour, for their many faults, tried to preserve a safety net for those who needed it.

Watching current events in Tunisia saddens me for many reasons. It is a country I have visited as a tourist and is a place full of diverse culture and history. It saddens me that so much suffering is necessary to claim basic human rights and to preserve a revolution. Mostly though, I think of how much of a dream democracy is for many of these countries. Is democracy the panacea some see it as? We live in a supposedly democratic society here in the UK. Is it serving us well? Is the will of the people being acted upon?

A debate for another time though. For now, I simply hope we are aware of what we are headed towards and are prepared for the aftermath. How David Cameron thinks he can fix 'Broken Britain' by fracturing it into even smaller pieces is a mystery to me.

Friday, 21 January 2011

The Power of Being Heard

Here in the UK, our expectations of treatment for ME/CFS are somewhat lower than some other countries. We are still routinely offered Cognitive Behavioural Therapy and/or Graded Exercise Therapy with little attention paid to physical symptoms. This, of course, angers me and the more I hear of the injustices served out to fellow sufferers the more angry I get.

Today I reflected on that sense of anger almost making me give up. I keep very up to date with all the advocacy groups and, whilst I'd never recommend burying your head in the sand and ignoring all that is wrong out there, I do wonder whether I need to spend a little less time focusing on what is wrong and more time focusing on what can be turned into positives. This update will address two areas linked to the theme.

Firstly, I visited my GP today (primary care physician, I guess they'd be called in other countries). I had, after being referred to the 'ME/CFS Centre' and not finding much of value there, almost given up on the medical fraternity and decided it was pointless dragging my exhausted body to appointments with doctors if nothing was going to be treated. However, I decided to give my GP one more try as I knew he was a guy who generally listened and took my opinions onboard.

So, I spent a large part of this week nervously preparing. I had booked a double appointment so that, in theory, I would have 30 minutes of his time. I had also booked a nurse appointment for straight after, in the optimistic hope I might get some blood tests authorised. I identified various tests that I felt should be carried out to exclude underlying infections (from parasites, bacteria or viruses) and meticulously prepared mini-speeches on why he should accept my requests.

I began by asking him to honestly share his views on ME/CFS and on what he was doing with other patients who had the illness. He was very honest about finding treating the illness frustrating (he's a man and a doctor - he likes to fix things!) and that he believes it is a physical disability of unknown origin. The poor guy must have felt like he was speed-dating me whilst I weighed up his pros and cons. I explained that I was frustrated with the diagnosis having the implications of me being beyond treatment and simply being left to manage as best I can. I then began what I thought were going to be fraught negotiations on which tests I could have. I fully expected to be told that I had received all the standard blood work and that nothing else would be done.

To my surprise, he agreed to every test I asked for! In fact, he added one I hadn't thought of. He also said he wished his medical student had been present as I was an "expert patient" who could pass on valuable learning. Whether this was empty flattery or not, I don't know, but it sure hit the spot!

Regardless of whether or not the tests throw up anything we can treat, I left feeling validated. I was heard and I was respected. Sometimes the positive outcome doesn't have to be that what is wrong is fixed. Sometimes it can be that we are simply listened to. He has said he is open to exploring different treatment options with me as long as I can back up my requests with meaningful research papers/data. This is potentially massive when considering how far behind the U.S. the U.K. currently is. There is much I can explore now, with the faith that the wisdom of people such as Dr Lapp, Dr Cheney or Dr Klimas might influence my own doctor.

So, I gave some blood for tests and I have to go back to give more (a lot more!) soon. A very productive day!

This also links in with the aims I had when setting up M.E. Community Projects. What I hope to achieve isn't based upon righting all the wrongs out there. It isn't based on anger or cynicism or negativity. It is solely focused upon those little, tangible ways of making a difference and helping others to feel supported, heard and validated.

Things are moving well in this area. I have been lucky enough to convince two very talented people to take overall responsibility for the editorial and design elements and we have already begun scoping out the first resource we will develop. If you want to get involved in some way (be it research, opinions, writing or supporting the cause in some other way) I'd love to hear from you.

The email address is:

Here's to more of us being heard and supported :)

Friday, 14 January 2011

ME/CFS Community Projects - Group Now Active!

For those I cannot reach via Facebook, please be advised that I have set up the group where all ideas and plans etc will be stored. Please do join up here, even if you think you might not be able to contribute much:

Thanks so much in advance for whatever help you can provide!

Thursday, 13 January 2011

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:

Wednesday, 5 January 2011

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.

Monday, 3 January 2011

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:

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.