Tuesday, 16 November 2010

A very long post on balance & pain & beauty

People tell me they enjoy this blog because it gets the balance of ME and non-ME right, how do I manage it? I'm not sure I know. My impulse to write - when I am able - is what has saved me from this illness, even just a couple of sentences. My posts are often short. I constantly have words banging together in my head, I would prefer if they were gently colliding. Still, I could never blog about ME all the time, it would bore the arse off me - remember I've had this since 1983 - but of course I must mention what is important, and my rage and disgust at the non-believers never goes away and intensifies periodically.

But neither can I bear undiluted self-absorption - and you do find it on some ME blogs, ironically those who are less ill tend to be the most solipsistic. You will come across this 'monopolisation of suffering' on non-ME blogs too, I guess it's human nature. Of course, there is a therapy to blogging, and we all construct masks when we blog or FB or tweet - unconsciously or not - but when some people - the least isolated, the most supported - seem constantly unable to see beyond themselves, that depresses me a little.

Unfortunately, those with very severe ME are usually too ill to blog much, they are too busy surviving the day, hoping tomorrow might be slightly less awful. Greenwords is a wonderful example of someone severe blogging, her posts are infrequent, but she does it so bloody well. And she is a dabhand on Twitter. Gardening is her passion, she is mostly unable to do it herself, but she is a 'passive gardener' and I learn stuff from her blog/tweets. (I like blogs where I learn something.) Other (ME) blogs I dip into are Digitalesse (photograpy); Ciara writes gorgeous posts on motherhood and Dr Speedy updates us on all the lunacy with just the right amount of scathing.

There was no blogging when I was very severe, I do wonder what I would have expressed of my illness back then if the internet had been around. Intense chronic symptoms distort your view, it can be hard to think of anything else. I remember I used to write my symptoms down to keep track of them and make bargains with God, whom I've never believed in. I'm no saint but I somehow manage(d) to keep hold of the fact that terrible things - and beautiful things - are going on elsewhere, no matter how much this illness has impacted on me. Like Helen Fleet, my character, I have a sense of absurdity, which no doubt helps me cope. But I can't blog solely about my life when children are being bombed in Lebanon/Gaza, flooded in Pakistan . . . take your pick of the horrors.

Still, some days you just want everything to be good for yourself and that is okay. There are still days my heart could shatter at what I have lost. And those with unremitting, severe ME deserve fucking trophies, they really do. I don't tend to put my worst days and hours up here, I think because a lot of that is in my novel, which is my weapon, and I feel I don't have to fight anymore (though I do, really, we all do).

Life can be extraordinarily painful and extraordinarily beautiful, there is luck and there is bad luck. It is how we respond that makes the pain bearable or unbearable. And how we respond depends on who we are at the core, and also on the support we have. Without support, this illness could very easily undo you.

When I see my wee aunt (who is fifty, she has Down's Syndrome and now dementia) I get the extraordinary pain and beauty at the same time. My heart breaks every time I see her, but when she smiles, it unbreaks and the world lights up. I saw her recently and fed her a miniature Milky Way and helped her drink a small carton of Ribena with a straw. It took over an hour. She is strapped into a wheelchair during the day. I hugged her and kissed her and sang a few verses of the Hokey Cokey, once her favourite song/dance. She can no longer walk or speak or read or write or colour in. I was in a state of total exhaustion for the next few weeks from this visit up north, that scary, jetlagged, all muscles compressed into a tin sensation, clumsy and forgetful, but all that mattered was I'd spent precious time with her.

Even taking the wide and bizarre spectrum of ME into account, if you look around the internet and see just how many claim to have (or have had) ME, I still fear that it is being over-diagnosed in some places, some seem to wear it as a badge, inappropriately. This is the fault of GPs and self-diagnosers who are - understandably - stumbling in the dark because of the nonsense peddled for so long by the Wesselyites. (Yeah, we don't actually know what's wrong with you, let's just call it ME. Now, be a good girl/boy, go and do some star jumps and we will train you not to feel pain.)

With any longterm illness comes much pain and chaos - and moments of beauty. We need balance to cope with it all. I don't always get the balance right in real life, but I hope I can do it on this blog.

*I meant to add this blog before but got distracted, have been tweaking this post for a week, it started as a post about my wee aunt and went in another direction. Holey Vision writes with grace (literally, her dog is called Grace) and humour about life with progressive loss of vision. Her spirit and lack of self-pity are quite something.


M. said...

I don't have a blog about my illness, but I do write cripfic, as I call it. And it's not an easy genre of writing. I am now writing my second novel in this genre (the first one will be published next year) and I have written a few cripfic short stories ranging from horror to scifi.

There are several concerns: I want to give a voice to those who don't normally have it, like people with severe CFS/ME. But it's hard to do it in an interesting way - and also hard to do believably. It can be very hard for a normal person to picture someone who has just about every possible symptom in existence. The natural instinct is not to believe it. And sometimes, being honest would also mean being too gross.

Even formulating these problems into words is hard for me. But I guess what I am saying that whether you're writing fiction or just blogging about your life, it is a struggle to balance between honesty (or what you want to convey) and keeping it such that someone still wants to read it and gets something out of it. And I hope my novels will also be enjoyed by healthy people.

nmj said...

Hey M, I'm not really talking about fiction - and I'm well aware of the problem of making the subject of ME interesting in a fictional context and I think I pulled it off!

I'm talking generally about expressing illness through blogging, sometimes I feel turned off by those blogs that seem constantly self-pitying. People have every right to blog what they want but when there is still so much misinformation about ME, I am concerned that anyone who doesn't know about ME, comes across these blogs and thinks of us all as a bunch of moaning minnies. The 'me, me, me' label sticks.

Also, maybe when you are not/or have not been severe, you can't truly see it from the point of view of a severe sufferer. The blogs I am talking about tend to be mild or moderate sufferers. Of course their experiences are valid, and they go through their own hells! But I know it must be galling for those who are still severe to be reading this kind of reportage: some of these blogs verge on self-parody,they are so precious, but the authors are clearly unaware.

In truth, you are not going to enjoy the blogging of someone just cos they have the same illness.

And I do get concerned at those who wear ME/CFS as a blogging badge when they clearly *don't* have this illness.

I see from your proper website (I won't link since you don't) that you are now fairly active and dancing and, more recently, Wii Fit are some of your past-times, so I guess you used to be severe/moderate - and are much recovered, which is great! - but you still want to be a voice for the severe. I wish you luck with your fiction (though I have never come across the term cripfic. I find 'sicklit' distasteful enough, but publishing must have its pigeonholes!).

Mischa said...

This is a difficult one, and I understand where you are coming from. Having just started a blog about a very specific treatment I am trying (LDN) I do feel it is self-indulgent, even if my plan is for it to be temporary. I told myself it might be useful to others wanting to try it, but a part of me also wants to come out about what it is like to be ill, as even family and friends have little clue. It is after all, an invisible disease, and one of the purposes of writers is to make things that are hidden more visible. As long as it is not all we write about then I don't think it's an issue.

nmj said...

Hey Mischa, I think, for me, it's all about the tone a blog strikes. And your new blog is specifically about your treatment so I would expect that people will go there and be informed! And if you can get things off your chest, all the better, but I am confident it will *not* be non-stop wailing ;) And you clearly write about other things. Maybe I am just jaded after so many years of being ill - but I do remember it can cause a person at least a decade of shock just adjusting to the disruption.

nmj said...

My post has been tweeted by the ME/CFS Daily online magazine and you can see it here with other stories.


Maija, above, can also be found talking about her experience of LDN. I had not heard of LDN til Mischa (also above) had started taking it. I must say I am intrigued...

Dr Speedy said...

Thank you for the compliment.
I knew there was a reason why I subscribed to your blog.

greenwords said...

So much to respond to in this post. I found it very moving. And whenever you write about your wee aunt I could shed a tear, or seventy.

Finding a balance between looking inward and outward is a challenging and delicate thing for all of us. I know I struggle with it, we probably all do, and try to somehow land in a place we're comfortable with.

I'm glad there are words banging together in your head. I almost think your best line was in your comment to Mischa: 'I do remember it can cause a person at least a decade of shock just adjusting to the disruption.' It's these pithy, insightful remarks of yours that I love.

I will always appreciate your stalwart support of people at the severe end of the spectrum.

vw said...

What a wonderful post nasim! You do get the balance right & as you say with any long term illness there has to be balance. I shed a tear when I read about your aunt, I too had an aunt with downs syndrome, she passed last year but her childlike nature & wonder of the world was a joy to be part of.
I'm trying to get the balance right having m.e, balance seems to be my greatest difficulty. Blogging has been a way to get things off my chest but I easily get sick of the whole thing & don't want to know. Reading about butternut squash & other useful info is light relief & a wonderful tip btw. I'm delighting in greenwords blog at the moment, what a find! Right up my street, being a passive gardener myself. I'm still sad I didn't manage to do any gardening this year but in the grand scheme of things, when the world is full of terrible tragedies it really isn't such a big deal. You always remind me of this. Thank you for getting the balance right & helping me to try & learn how to! X

nmj said...

You are most welcome, Dr Speedy.

Hey Greenwords, I think cos I have had this wretched thing for so damned long I can stimes forget just how much of a spin it sends you into in the beginning - whether you are mild or moderate or severe, your life is grabbed from you and sent whirling. And thanks for acknowledging my wee darling aunt, who is really at the heart of this post.

nmj said...

Vikki, You snuck in there, you will know exactly what I mean then, when I speak of wee aunts! And how tragic when things start to deteriorate. I enjoy your blog too, Vikki, there is a real soul to it, even when you are having a hard time, and anyone who stands up to Esther bloody Rantzen deserves a medal!

And BTW, everyone, I have recently done the linking to blogs as they publish, in my sidebar, which everyone else has had for ages.

nmj said...

I've been thinking a lot about this post and how ME can be such a different experience, but the crux is that if it were *fully* acknowledged as the neuroimmune illness it is then people could be as vapid/self-absorbed/eccentric as they wanted on their blogs, it would not matter. You do not dismiss a person's MS or lupus or cancer simply because they are annoying. I fear with ME this is not the case. And just as a reminder of how much infighting this illness causes I refer you to the post where I was accused of doing ME more harm than good in spite of being a good writer. That still peeves me hugely if I let myself think about it. I have disabled new comments on that post as I don't want to reignite the debate, but more show how bizarre this battlefield is, where soldiers on the same side seem to kick each other a lot.

Mischa said...

No, but one can be less sympathetic if the person is annoying, especially if they want to be defined as 'so and so with x disease'. And with ME/CFS, because of the stupidly wide range of people the diagnosis includes, one naturally becomes sceptical of those wearing the badge, especially if self-diagnosed.

A simple mind experiment: imagine if a blood test was developed tomorrow that could determine once and for all who had ME. How many people would actually take it?

nmj said...

That's my point, Mischa! If the illness we know as ME were properly accepted (and that would need an exclusive test) then you could still dismiss the person with ME as annoying, but not their illness. For now, I think ME is probably still seen as 'that annoying, whiney illness' in some quarters because of the 'spin' for want of a better word. The illness becomes the person in the mind of the observer.

Ah, blood test: that is a good question!

nmj said...

Yes, I see what you mean, less people would 'wear the badge' if there were a diagnostic test...sorry, am being a bit slow...

Susannah said...

I agree that the tone of a blog is really important. I think everyone really has some kind of innate need to share their 'suffering' (don't really like that word but can't find the one I actually wanted lol) - but the way that you do that can be positive, or it can be negative - both for the reader AND the writer.

I find constant self-pity to be just destructive. Honestly, I think too many people end up falling into that trap - and I just find it a total turn off in any type of situation.

I don't feel like I'm expressing myself very well... I think we all (especially those of us who suffer very severely) need to acknowledge our pain, and even times when we need to wallow for a while - but if we don't also experience the joy of life ... love, and happiness ... we're allowing ourselves to miss out on the things that really make life worth living despite our pain.

Some of us have big joys in our lives, some of us only minuscule things ... but we all need to grab onto those and never let go, not even for a minute.

I guess I feel like that because I know there is such a small line standing between me and the great abyss of despair and hopelessness. M.E.'ll do that to you. Maybe that's the kind of lesson that we can learn from someone like your aunt..?

Not sure if that made any kind of sense ... my brains not exactly functioning right now, but I really wanted to reply.

nmj said...

I agree with you, Susannah. Of course it is necessary to share suffering, and mutual support through blogging is a great thing. I am sure I would have been comforted by other ME blogs if it had been around when I was at my most ill and isolated. And the fact that others are suffering (bombed children, people with Downs and dementia) can be something of a red herring, it does not mean we too are not having a hard time ourselves. But my point is that those who should be wailing the least seem to wail the most! And I really am quite alarmed at the rag tag of bizarre bloggers that are on the ME bandwagon, it honestly offends me. As Mischa says, the definition has become so stupidly wide, enabling a rather rainbow community of ME/CFS bloggers. ME is a discrete neurological illness but has been adopted by some as almost a hobby, it would appear. The illness has been grossly trivialised, in my opinion. Again, this is the fault of the psychiatric lobby.

Mischa said...

Dear Susannah,
I don't want to hijack Nasim's post but I feel moved to write to you since I have just posted about this. I am what is probably termed moderately ill, although ill enough to have lost my job and for my family to have been affected. However, since being diagnosed some years ago, and learning more about the wide spectrum of sufferers (i hate that word too) I often thank my lucky stars at I am not severely ill and constantly bed-ridden. You are right to say that one needs to grab on to the things that bring one joy, and for me one of those things is that I can still function to a large degree. Doesn't always work of course, especially on a bad day - any more than thinking of starving people works when you are not enjoying your food - but on a good day it does, like when I can walk the dog for twenty minutes.

I salute you!


nmj said...

Susannah, Just want to say, your words have stayed with me.

'Some of us have big joys in our lives, some of us only minuscule things ... but we all need to grab onto those and never let go, not even for a minute.

I guess I feel like that because I know there is such a small line standing between me and the great abyss of despair and hopelessness.'

And, sometimes, it is the even the minuscule that can grab one back from the abyss. Please take care of yourself. I salute you too!

miss milki said...

I'm a little late weighing in on this but its something I've often thought about. I don't blog at the moment but I used to blog about everything BUT M.E.! For me it was a way to acknowledge the small joys, to browse online & find the beautiful things in life and share them with others & to be totally honest it was an escape from the pain of my own life. I gave it up early this year when I went through a particularly bad patch & haven't gone back to it.

I have often thought about starting a new blog, an "M.E. Blog" but it is this very issue that has stopped me up to now. I don't want to come across as whining or moaning, and I don't know how I could write about my illness without coming across that way. I know how fortunate I am & i don't feel the need to wallow in self-pity but would that come across in a blog? I don't know how I could write a balanced blog and one that has something to contribute & until I figure that out I won't be starting one.

That's not to say that there aren't some brilliant M.E. blogs out there, some are informative, some are inspiring and some are even entertaining. I follow quiet a few of them & appreciate the effort that goes into them but I realise how difficult it must be & I can see the failures. Usually the ones I find depressing! Thankfully though, yours is one of the successes, so well done! ;)

nmj said...

Thanking you, Miss Milki. With such a great name, I would certainly be checking out your blog.

Yes, there are some fine ME blogs, and I hope I didn't seem too harsh in my post. I think we are more likely to turn to the illness-specific ones when we are in a more ill phase, the way we are drawn to break-up books/advice when our relationships are going through a horrible spell.

I probably could not blog and not mention my illness, it is still a big part of my life, but also a very longstanding, boring part and I can't give it more attention than it already demands.

Susannah said...

I've really only recently started to try and wiggle into the M.E. 'scene' (Gosh don't you hate that there IS a 'scene' lol - or at least, the kind of scene that there is?) ... to try to find people who've been through what I have, and more importantly, who are dealing with it in positive ways rather than playing the blame game and only getting angry. (I mean - I'm angry too, beyond that, even - but if that was my only focus it would be so bad for me ... and I honestly am not sure it even does any good for the 'cause' {I'm apparently liking the '''s right now lol} I think it just gets people's backs up and sometimes even seems to make people more likely to believe that we're all creating an illness out of nothing!)

Anyway ... coming back off my rant & ramble ... It's taken me a long time to get in touch with other M.E.ers, because of these very issues - every forum or group I went too just seemed full of negativity. Over the past few months I've finally found a handful of places I want to be, and a few people that have been good to talk to. Maybe I was drawn to do so because the last year has been especially hard. (I've been bedbound constantly for a year now, after 14 years of illness, the last 6 of which I've been housebound, sometimes bedbound - but haven't seen hide nor hair of a doctor for a long time, never mind seeing friends other than my carer/best friend.) And I've had this kind of 'finally!!!!' reaction going on. What I've found is that there are very very few positive larger groups - they seem to get infested with the activist sort of stuff, the dooms and glooms, or worse, those who don't really have M.E. at all - but contacting people through penpal type groups, or individuals' blogs, seems to be a better way to meet likeminded people who are genuinely ill with M.E.

Susannah said...

Ok, I wrote too much for the comment box lol...

Yes, the illness has been grossly trivialised. And I have to say, I'm sick of it. I don't think I've ever got to a place before where I am so totally furious with the people dictating policy for M.E. treatment in the UK. It just seems like while there has been a few positive jumps in the global arena over the last few years, the UK is stepping further and further back into the dark ages - led by a bunch of people with dubious motives. It's completely ludicrous!!!

Mischa & Nasim, thank you so much for what you said ... I don't know what to say really, but it meant a lot. I think your replies were one of those little things I was talking about! :) No ... it doesn't always work - and maybe those are the times when we need to let ourselves wallow for a while. ;) It's all part of the process, right?!!

nmj said...

Hey Susannah, I think it's also important to recognise that we are not going to get along with people simply cos they have the same illness, and when you throw in the craziness of what actually defines ME, there is much tinder for explosion! (as a writer I should be ashamed of such a crap image but I am not long awake and my brain is frozen from the snow).

I'm sure you get disagreements on MS/lupus forums (maybe not as violent) but at least you will not have people who don't have MS putting in their tuppenceworth. And with both these illnesses you get different severities but you are not likely to be given a diagnosis when this is not actually what you have.

The fact there is no single diagnostic test for our illness and the fact the psychiatric lobby has been so powerful has enabled what I call the ME hobbyist, someone who uses the badge when what they have is actually idiopathic fatigue (and most likely depression). Then you have the ME careerist (this is not my phrase but I love it), those who do have ME but are so wrapped up in themselves, and lack all sense of 'okay this is bad, but it could be worse'. I am talking about those who have some quite decent quality of life but act as if they have none and make an absolute meal out of their situation.

Susannah, I would not blame you for wallowing one bit, you seem to have had a pretty grim time of it, if I can do anything to help, please email me on my blog contact.

So we have the ME hobbyists (who do their own damage, trivialising the illness) and we have the extremists, the suicide bombers of the ME world, who ruin it all for everyone with their aggression.

But I also love the democracy of blogging, but it means you have necessarily to put up with nonsense written about ME. You can challenge this nonsense but it would eat up your energy/days.

I challenge on occasions when not to challenge would be worse.

I will finish with this link about how CBT and GET - from a Belgian study - are rubbish!


kp said...

i've been reflecting a lot lately on how different my experience of this illness would have been if it had begun in age of fullblown cyberspace. the amount of information out there can be overwhelming but the connecting with other people in the same situation is priceless.

oh, and greenwords is an absolute favourite of mine too.