Another year over

Well it might not be Christmas but to paraphrase Mr Lennon

'...what have you done ?: another year over, and a new one just begun...'

and in a sense it is another year over because I just had another birthday (don't ask which one...let's just say that the candles on the cake set off the smoke alarms !)

I was wondering why it is that I dislike birthdays so much. Every year they roll around and every year as the big day approaches I get more and more gloomy and grumpy and just want to hide so I can re-emerge when it's all over.

Don't get me wrong: I really appreciate the warm wishes etc and the trouble people go to. My birthday was celebrated on Sunday and we had a lovely day by the sea with a splendid picnic and beautiful weather and there was an air show/display ...all my favourite things....but it took so much emotional effort to get myself there and get into it because I woke up with that terrible dragging feeling of not wanting to get out of bed at all or face presents or cards or peoples' smiles. What a misery I am !

I think it's because I can't really see what there is to celebrate. I just feel like I've survived another year. It isn't all to do with being unwell either. I was like this before I got really unwell. I've got more and more like it since I turned 40 and that was a good while ago.

Some of it is midlife stuff: the dreams, expectations, hopes, expectations from youth unfulfilled.

Some of it is about being unwell: am I any better ? what have I achieved ? what can I plan for the future ?
Doesn't feel like I can reply with anything positive to any of those questions.

And some of it is to do with hating to be the centre of attention, being the focus. I'd much rather work behind the scenes, much rather buy other people presents, arrange other peoples' parties etc.

One of the difficulties of having a chronic condition which keeps you away from normal life so much is that you get 'out of the loop', disconnected and days can just drift away. One of the hardest things for me is to try and manage the balance between the things I have to do and the things I want to do. Having children means there are always a whole load of things I have to do: cleaning, washing and ironing clothes, arranging appointments, tidying up, cooking, birthdays, help with homework --- all the usual stuff that parents have to do . I'm happy to do them but it takes time and effort and by the time all that is done there's little time for me and not much energy left. (That's why this blog is important because its for nobody else).

Recently, as I said in my last post, I have been branching out more on the internet and 'meeting' new people...people with M.E. It has interested me that for many of them their difficulties in trying to have some sort of life are quite different to mine. Many are really quite isolated and have no real family, let alone children. It seems that they almost envy me. I can see why...in their heads they see the company and the relationships between us. Of course that is something I value greatly....I love my children with all my heart and longed to have them but in many ways it makes management of my condition much, much harder and there is terrible pressure to try and keep up with all they need and want to do.

So another year over and what have I done? What will I do?

Well, I shall try to maintain some sort of creative practice because the Creative for a Second project really showed me how important that aspect of my life is to me. I shall try to encourage more independence in my children because that's where they need to head and that helps me too and I shall try to maintain a positive outlook and explore more about the HSP side of me and some of the reasons why some emotions drain me more than others.

A Touchy Subject

Recently I've branched out in terms of exploring the Internet and found even more lovely and interesting people to get to know. Many of them also have M.E./CFS or some other chronic illness.

The Internet can be a wonderful tool through which to meet people, gain support, new knowledge and experiences. What has been interesting and thought provoking for me is to gradually find out more and more about these new acquaintances and to compare notes.

As ever, with relationships of any kind, I have 'clicked' with some people more than others and, again, as in any group of people, there has been more exchange of experiences with some than with others.

Names or situations are not relevant here and I am honoured that people have been willing to share stuff with me: as a virtual 'friend' and, simultaneously a virtual (in the old-fashioned sense) stranger, it may be far easier and less threatening to tell me stuff than to tell a 'real' person but still, I always feel honoured if people share a part of themselves.


Now, it may be that like attracts like but it has to be said (well it doesn't have to but I'm going to anyway) that there does seem to be a common thread running through the lives of many people I have met who have M.E./CFS: that they have had some really bad experiences in their lives and there is real trauma. Without going into any details I cannot exclude myself from such a group and it's interesting that I don't go into details precisely because of the nature of my past.

Suffice to say that I cannot help but wonder if there really is some sort of connection between people who succumb to M.E. and people who do not. Let me make it perfectly clear that I do believe 100% that M.E. is a genuine physical illness. Recently, there has been an awful lot of publicity and conversation about the XMRV virus and the possibility ( may well be more than a possibility) that this is one origin of the condition called M.E. However, it also seems that many people carry the virus and yet are not unwell...so what makes the difference ? Are the people who become unwell predisposed in some physiological way or is their immune system also compromised by the way they handle stresses and trauma or compromised because there has been so much trauma ?

There seems to be a consensus amongst PWME that stress makes our symptoms worse and certainly for me I know that, just before I was diagnosed, I had had a long, long period of stress ( about 7 years of one crisis after another where it was me who was expected to sort everything out and cope and support other people). I also know that last year's relapse was preceded by a series of difficult situations. I held up well and coped with it all until eventually everything became too much, my health failed and it took me almost 9 months to begin to pick up again.

As well as getting to know more PWME recently I have also been exploring other ideas for almost a year and one of these is the notion of the HSP or the Highly Sensitive Person:

' a person having the innate trait of high psychological sensitivity (or innate sensitiveness as Carl Jung originally coined it).' According to Elaine N. Aron highly sensitive people comprise about a fifth of the population and may process sensory data much more deeply and thoroughly due to a biological difference in their nervous systems'

Certainly, as soon as I found out about this theory, I felt an affinity and recognition and I subsequently found that there is a whole community of people who consider themselves to be HSP. There are forums, magazines, groups, retreats etc etc and guess what ?: they are nearly all in America and not in the U.K..

Now, to we stiff upper lipped Britishers, this HSP stuff may well smack of 'typical' West Coast/ Hippy Trippy/ Oprah American 'nonsense' (sorry any U.S. readers but this is how this sort of stuff is viewed here :' Oh that's so American') but, to me, there seems some sense to it. It rings a bell somewhere...not just since I had M.E. (which is forever ..well about 37 years) but since forever: all my childhood memories, all my teenage memories are coloured by being exactly as HSPs are supposed to be. Many of my adult memories are filled with experiences of trying to deal with feeling out of sync, too sensitive and trying to find ways to be like other people and squeeze myself into a tight, tight box.

I have joined some of the HSP Internet news and discussion groups and sometimes I find myself thinking (and sometimes saying aloud) 'Oh for God's sake..get a life, get a grip, just get on with it '. This is very un-HSP, very insensitive very 'un-empathetic' but there is a kind of anger in me I think because I probably feel that that is what I have had to do in order to survive for so long...just get on with it despite 'it' being so difficult so why can't these other people ?: not very charitable of me.

The 'it' might be just life, just relating, just trying to be like everyone else when I just don't feel that way, don't respond that way. Eventually of course one becomes hardened, becomes cut off from one's true self because...well because it's easier in some ways to appear 'normal' but inside it gets ever, ever harder. When the crunch comes and there are too many stressors and if or when one of those stressors is a physical illness, then the body breaks down and the whole house of cards that has been built so carefully, so precariously by the HSP falls to the ground.

So here I am being brave: risking ridicule for allying myself to hippy trippy 'American navel-gazing nonsense', risking wrath for suggesting that maybe stress and sensitivity and innate vulnerability may have something to do with why some people succumb to M.E.

I may have been lucky but virtually all the PWME I have met through the Internet have also seemed to be sensitive, thoughtful, creative, vulnerable, giving: the sort of people I'm glad to know, the sort of people who seem rare in the real world. Perhaps it's easier to appear to be that pleasant on the web. Your personality, your response can be edited by yourself so that you appear in the best or better light. I think I appear to many to be quite jolly. A lot of the time I am but I have another side that's gloomy and brooding and feeling uncomfortable and angry that you rarely see here. However, my sensitivity or my 'antennae' as I have always called them, tell me that the people I know through the Internet are good people and are equally so in the real world. They are people who I would enjoy knowing if they lived up the road instead of the other side of the UK or half way around the world. and the common thread is that they have a particular sensitivity and innate gentleness.

Is there a link ? I don't know but I feel there is.

I'd love to know what you think.

* I apologise if this post is rambling. I'm particularly tired at the moment and trying to write this with a background of drilling and hammering and builders all through the house.