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.


  1. i think that going past the mind and into the emotion of it all is is a harder step to take for many. and especially for people who are used to navigating life with their minds and relying upon their intelligence to get them through things (as i sense you largely are). i suspect the mind goes into overdrive 'fighting' against the threat it feels within the very body that 'houses' it for lots of people who approach that way. and then maybe it's just a case of fighting until it it can't fight any more?

    you know i hate to think of you suffering in this way, but you also know how strongly i feel that these emotions are natural reactions and need to be felt and 'processed'.

    very much in my thoughts B. XXOO

  2. Hello Mr, I can relate to what you are saying ... to be honest I am currently going through some of the same stuff. I tend to skip the grief period initially and then need to come back to it later. It's what I did when my partner died and sadly I have repeated the mistake with my illness. So, in that you are not alone! Look after yourself, see you whenever the time is right :)

  3. I think you have to wallow to really feel. Well done, I am a firm believer in it for coming out stronger on the other side. Take care, sounds like you are.

  4. Barry I completely understand what you are saying. When I first found out what I was dealing with I was determined to beat it and fast. After a while I could take in less and less. I agree, what you are going through now is healthy. It is an emotion that needs to be expressed. I think you are a very wise and sensible man.

  5. there is a slight smile across my face as i read this. like that of a big sister who is ever so proud of her little brother. lots of love!

  6. Well you know what I think ..but to use a is part of the journey....and really the hardest part and it comes and goes, ebbs and flows.

    I was always struck by how you mentioned your intelligence (in the academic sense) but there's emotional intelligence too..and you have that in spades as well.

    Rest up, stay quiet as long as you need. Do what you have to do.

    See you when you're ready (*)

  7. Dear Barry,
    They say that the 5 stages of grief start with shock and denial, then anger, and then comes the depression. The shock/denial stage can last a long time (it did for me, a good 2 years or so). For me this initial phase consisted of believing that there was an answer and a cure for me right around the bend -- trusting that each new doctor I saw would hold the key. Perhaps this past year you've been dealing with those first stages of grief, and now you're moving on to the next stages of anger and depression. Fortunately, "acceptance" is the next and last stage! (However, I tend to cycle through the stages on a regular basis!). I miss you and look forward to your return with that "beehive of activity" that always makes me smile.

  8. hey there

    thanks for sharing. I did not question your absence online, because I too come in and out. and as for grieving, you must let go to it because it is an ongoing and ever-changing beast.

    I have been sick some seventeen years, diagnosed with cfs for ten. I still grieve today. however acceptance and diluted expectations helps.

    take care of you, take all the time you need.

    thinking of you xoxoxo