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'.