Archive for the 'ThoseAroundMe' Category

Measuring By Your Own Experience

I remember learning that most people tend to react to situations by measuring them from their own experience.  That is, you apply what you’ve experienced yourself to the matter in hand.

I have tried really hard from that day forward to not limit my understanding to my own experiences and I am the richer for it.  But it’s terribly difficult not to do it because often we can only call on what we know to make sense of things. Often we want to be able to help, to offer kind words and it’s easiest to do that from what we already know.

It’s much easier to say what some of the little that you know than to say ‘I don’t know about this but I’ll come on the journey with you’.  Much easier than to admit to ourselves that we don’t know all that much in the grand scheme of things.

Especially so because often our contact with people and situations is casual, or we aren’t able to invest that much in it so and we don’t want to have a silence  – so we fill it with advice or the knowledge we have ourselves.

What this post is really about is the plumber.  A very nice, very talkative man.

He came to give us a quote on some little but urgent jobs and on his way out was asking what we did.  He vaguely remembered from last time (wrongly) that I was a student.  So I was brave and said no I was sick and didn’t work.  Was I signed off?  No I’d not worked for 4 years from being sick – I have M.E.  “Oh never!” says the plumber, “My wife had that”.

My heart always sinks when people say “had that” in the past tense.  The first was a hairdresser who said they had it for a couple of months.  Groan.  It usually indicates people who’ve had an illness that doesn’t seem to sound much like what I have wrong with me.

To be fair to the plumber he was really, super nice about it all.  Told me his wife had it when she was a teenager back when people laughed at you for having it.  Told me she had to take time out and go back to do her education over a series of years.  Told me they have 2 young children and she’s a lot better now.  Told me she still gets tired and gets monster migraines from the M.E.  Told me he’d pass on that I have it and that I can call her anytime to chat about it if I want to talk to someone who knows all about it.

He also told me I’ll get better.  In fact he told me I can’t get any worse – I can only get better.  “Honestly”, he said.

“Ummm.  Yer … but … I have actually just relasped a bit …”

“Ah” he says “do you get it where you’re fine for a bit and then you’re in bed for a week?” he nods to encourage my yes.

Actually this is the kind of ME that mystifies me.  This periods of ok, periods of very ill is an alien concept to me.  I expected in the early days that this is what my illness would like if it persisted.  Maybe I’d get a lot better and then crash for a week, pick myself up and get back to it.

When that patch of “ok” didn’t come I thought perhaps I was just on a wider arc than most. Perhaps I was in a crash for a year and soon I’d be ok for a year, then maybe crash a bit and get better – but on a longer timescale.

Nope.  I’ve been “on a consistent level of crap” (as I said to the plumber) for nearly 3 years.  I improved very, very slightly over that time it’s true – but nothing to write to the DLA people about.  Not enough to go to the corner shop on my own, let alone get a job or have much of a normal life.

So the plumber telling me I can only get better, I can’t get worse has made me pretty upset.  With myself.  For not being successful at recovering, for not ‘only getting better’.  For failing.

Him telling me the key was a positive outlook didn’t exactly cheer me either.  I know I’m a bit sad and down at the moment but I do have a pretty positive outlook generally and indeed even at the moment despite being utterly fed up in the face of a set back with my illness.  All these years I have focused on the can do not the can’t.  I’ve laughed nearly every day.  I sought out joy.

My rational, logical brain knows this conversation is nothing to get upset over.  I know for a fact that I can get worse and get worse very easily just by pushing beyond my physical limits. 

Maybe his words of wisdom took that knowledge as a given or maybe his wife’s experience of ME is different to mine.  But I know, from my own experience, that I can be more ill than I am.  I also know that a positive outlook is very important because it’s a lot easier to be this ill with a positive attitude than with a negative one – mainly because I’d probably do myself in if I had a negative attitude.

I also note that he was insistent that something (relevant to UK tenancies) was law when I know it is not.  I told him I thought he was wrong and he said no, definately it’s the law.  So I double checked a couple of sources and I’m right.  So let’s just say as well as being nice and talkative he’s also pretty sure he’s right about everything.

Plus the plumber was only reacting to my revealing I have M.E. from his own experience, as most of us do.  He measured my illness, my life, my ability to recover – from what he’s been through with his wife.  And in turn I measure this myself largely by my own experience – although there are large doses of others experiences mixed in here too.

He told me I want to get to see some proper experts.  Sigh. I wonder still who those might be.  A referral to a specialist will get me CBT and GET and maybe pacing and lifestyle management classes.  I continue to resist these because I’ve kind of been through all of that in the first year or two on my own and I’m certain they will be counter productive.  Which in itself makes me question myself yet again. I resist the professional NHS help because I want to keep myself ill?  But I know I resist it because I don’t trust those delivering the therapy to keep me well or to not risk the little ability and function I do have.

The plumber was being kind.  He was being encouraging.  It’s just that it didn’t quite have that effect on me because my experience and knowledge are different.  Can I be angry with him for that?  Actually I’m upset (or is it angry?) for the unsolicited advice and pep talk. 

But also I remind myself that without people sharing I wouldn’t have access to the tools that have helped me with ME – that includes loose pacing, D-Ribose and LDN.   So what do I do with the hurt and the upset and the anger?

I guess I can blame the ME for making my reactions, my emotions a bit too senstive and unchecked due to this flare.  And remind myself when I am in the plumbers shoes to try and not just measure it by my own experience but to try and look outside of what I know (because I always learn and it always helps).

Not forgetting that sometimes listening and saying “I don’t know what to say” is very valuable too.

Image by knickertwists

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Respite Gofer

Growler is letting his hair down this weekend.  Off to see his beloved Wales play rugby in the 6 Nations at home.  I love that he is going, I love that he gets to see his best mate and I love that he gets to be a normal welsh bloke for a day.

I am stopping with my dad overnight who has volunteered (with a smile) to be my Respite Gofer.  Which sounds much nicer than carer I reckon.

I admit to having some reservations about my sixty five year old father undertaking such tasks as fetching me drinks and making sure I take my medication … but (as a friend pointed out) he is probably delighted to be able to help.  He certainly sounds it.

So I hope it will be good for me.  Good to be able to admit some of the help I need to someone other than Growler and not to feel weak or hopeless just because I need assistance.  Plus the ability to share the load is a positive step.

So why do I feel nervous?  Something to do with feeling vulnerable? A fear of seeming lazy and/or too demanding? A worry I will do more to compensate and tire myself out?

Tribute to Healthy Spouses and Partners

I just read a fabulous post by A Chronic Dose about The Healthy One.

An extract:

the reason no illness is ever truly invisible is because the people who love us can decipher the many signs and symptoms of illness no one else can. I think it’s important to explore what it’s like for our partners or spouses when a shared illness is invisible, because it isn’t easy. It isn’t fun, or glamorous, or fleeting.

And it certainly isn’t fair.

I mentioned previously that my husband can tell from the single word “hello” if I am having a bad day.”

It’s a great post.

And this is the comment I left:

“I am also lucky to have a crazy husband.

Although chronic illness can put tremendous strain on a marriage I like to think it has built an even stronger bond between me and my husband.Even though there is fear, sacrifice and struggle – we are left in doubt of our love and devotion to each other.

Whenever I shake my head and think “how can he love me when I am like this?” I have to remind myself that I do him a disservice in thinking so little of him and his prospensity to love and care for me, and to help me to be the best I can whatever the circumstances.

And I remind myself that if the roles were reversed I would be there for him fully and wholly (though perhaps not with quite as much grace or charm!).”

And here’s one of my favourite inspirations about loving relationships and chronic illness taken from an article called Coming To Terms With A Life You Didn’t Plan on Melissa Kaplan’s site Chronic Neuroimmune Diseases :

I was also berating myself and feeling guilty about all the things I could no longer do routinely – cook, clean up, enjoy hobbies or sports or fun outings. I worried that my husband was getting the end of a very pointy stick – wasn’t I a drag? Wasn’t he sick of doing all the work? Didn’t he wish he had a healthy wife? How awful is this for himThen we talked about what bothered him worst about my being sick and his responses surprised me – an always-messy house, a lousy social life and my tendency to overdo and then relapse. Now we simply look for things to do that aren’t tiring, like movies, going to museums (we bring the wheelchair for me) and going for long drives together. We got a cleaning service to come in every other week, making the house livable again. And I vowed to ?When my husband and I talked about these issues, he pointed out something very valuable to me: If the situation were reversed, would I still love him, he asked. Of course, I said, stung he’d even asked the question. Then I realized: I was assuming the worst of him when I assumed he’d love me less because I’m sick.

work on resting and not overdoing it. It’s made a small – but significant – difference. We feel like we’re “handling” it. And, hey, life isn’t so bad! The best part: I don’t think often about this stuff anymore.”

Incoherent Blah Blah Blah

Yesterday I posted on my art blog about how I am happy in my core despite CFS/ME.  Whilst I still think that’s true it’s not the most immediate conclusion you would draw if you sat with me this last day and night. 

It started with not being able to get to sleep last night.  A combination of stomach/IBS type problems and what feels like a brick wall between me and sleep.  It’s not that my brain is overactive (which always used to be the reason I couldn’t sleep) or that I’m not tired – because I am in fact exhausted.  It just feels like trying to go to sleep when you’ve only been up a few hours – it’s not the right time.  My theory is that my body clock gets confused by the ME/CFS.

Whatever the reason it’s irritating.  Not the end of the world but frustrating and has a knock on effect.

During the first few attacks of this transient insomnia I removed myself from the bedroom and was sleepy enough after an hour or two to return to bed.  The amount of time it’s taking for that sleepiness to take hold has been getting longer and longer each time.

Last night I sat killing time until just after 5am.  It seemed if I didn’t go back to bed then I wouldn’t be in bed at all that night.  So back to bed and I dropped off as I heard the first birds singing the dawn chorus.  Sigh.

At 9.30am the phone rang (a wrong number) and I managed to dose for just an hour or so more.  I was one very grumpy lady.

The rest of the day so far has seen me staggering between quiet contentment and crazy wailing sadness/frustration.

My dad phoned this morning and spoke to Paul to catch up as I was still flopped in bed.  He’s wanting to fix up to see me (us) before they go on holiday and before my brithday.  Plus it seems ages since I saw them.  So he suggested lunch or a meal sometime next week and he would ring later to speak to me and make arrangements.

I found a sudden jetstream of energy and was able to both wash and dress, and even move downstairs to the lounge before lunch! (Well, just).  I managed to draw – a few nasty messes and one drawing I really rather like.  Which is a joy because I’ve so struggled to draw these last few weeks and have been missing it dreadfully. 

After lunch I found another little jetstream of energy (joy!) where I felt clear and human.  I was pretty certain (with just 4-5 hours sleep) that by late afternoon my battery would start to drain and I’d be in a useless state to talk to my dad.  So, feeling inspired to do something I thought what better way to spend my energy than chatting with my dad. 

I sat holding the phone for about 15 minutes trying to press the dial button.  I couldn’t do it. 

I couldn’t find myself to present to my dad.  I mean I was there, I was physically capable of pressing the button and holding the phone – but it was like Rachel had stepped out for a moment (a long moment). 

I was pretty sure that he would ask me things (how are you and so forth).  I was almost certain he would ask about meeting up and what would suit me best.  I had no idea how to answer.  I was rendered incapable of answering, of figuring out, of thinking things through, of trusting myself to remember what we agreed, of finding words to put in the right order, of not bursting into tears because I didn’t know what to say.

But this is my dad, my great love and my big squeezing hug of love.  It’s not because it was him – it was because of my brain. 

Paul found me holding the phone and I tried to explain why I couldn’t dial.  He had a momentary blast of frustration because it’s easy – just say x, y, z.  You get upset when people don’t get in touch and yet you get upset when they want to speak to you.  Torrential tears and snot follows (mine that is).

Paul apologised – he realised straight away that it isn’t easy.  Nothing is easy.  I’m very ill.  But the tears continued because what he said was what I was thinking.  It’s not difficult Rachel – just do it.  Except, well it’s hard to explain – “there is”, I said “a hole in my brain”.  A void, a rift, a gaping chasm where logic and figuring out and understanding and finding responses and knowing responses is supposed to be.

It’s frightening.  It’s really frightening.  I can’t figure out whether I will be ok to go out for lunch or not on such and such day – but I can figure out the inability to do so scares me witless.  And that exposing the me with that brain hole is frightening.  What if people think I am stupid, or mental, or depressed?  Because I am not any of these.  What if people (my dad) worry about me – which of course they are (he is) bound to do.  I don’t want to show them my exposed major failing of brain and subsequent upset because that’s just a snapshot of my being and I don’t want them (him) to carry that image of me with them when the majority of my time I am ok and content.

So I get more upset because I don’t know that being honest is the right thing to do either.  Paul says now I am working myself into a state and I think (or trust) that he is right.

In the end I get what I need – a clear idea of what to do to deal with the situation.  Because Paul figures it out for me and tells me.  Text dad, tell him I’m still feeling rubbish and will ring tomorrow – and suggest that afternoon tea would be better than lunch or a meal (because my time slot for ok-ness for such things is limited). 

Well, it’s simple isn’t it?  But I would not have been capable of arriving at this conclusion myself.  Me.  The person who is highly skilled at problem solving, figuring things out, be empathetic – knowing the right things to do and the simple solutions to stuff.  Now with a big hole in my brain.

I think the hole is gone again.  Well it is unless I try to make a decision or answer a question.  I can manage questions like “what would you like to drink?” because I can remember the taste of the options I usually go for – though sometimes Paul has to suggest one or two for me to point and say “yer tha’ one”.  But anything out of the ordinary – well it gets tricky some days.  I’ve learnt to be better at saying “I have no idea” and “I am totally not bothered which” about the not so important things – because deciding is so impossible and it’s better to be blunt than get upset or frustrated over not knowing what telly programme I would rather watch.

I’ve blogged before about my cognitive functioning kicking up.  Having had so little sleep I know rationally it’s not a huge shock I’m having the problem again today.  But bloody hell it sucks!

I realise that not many people really know how bad it can get.  How bad any of my CFS/ME symptoms can get.  How bad things can get on a not particularly different sort of day to normal.  Which is why I’m blogging partly – because Paul suggested I could at least show this to my dad and then he would know a bit more. 

I pondered that I don’t want people to see this side of me because

a) I don’t want them worrying and carrying this very dismal picture of my life with them, and

b) because when I speak to them and show them this side of me with this illness it makes me see it from their perspective – my life, my challenges against the back drop of “normal” lives.  It brings into sharp focus how limited and challenging my life is.  It makes me sad for myself. 

I can function quite happily in my bubble and most of the time that’s fine because I’m not able to do much.  The conflict comes in wanting to do scaled down versions of normal things, behaving in normal ways – when I am just not able to.  To want to meet for a quiet pub lunch and a chat, when I know I can’t even wash myself every day.   When the reality of what I am able to do on a normal decent day without any pressure or any change to normal routine is minute compared to what a healthy person could and does do.  Let alone trying to put on a semi normal face and perform as a battling through it, living a full life despite CFS type person.

I know this is a massive rambling blog.  I want to be succinct and I want to show you how positive life can be even with this illness.  But at the same time I am often full of incoherent thoughts, inabilities to process information and have a shitty difficult time – even if I am able to smile through it.

My brain fog was at it’s worst last Christmas at what I consider to be the beginning of this current episode/relapse.  I was still trying to do too much then.  I found myself not being able to remember processes that were automatic to me normally.  I used to make a cup of tea without thinking too much – now I have to focus very hard and have a (large print) tick list in my mind.  I even have to say the steps out loud to get through it sometimes – cup, kettle on, teabag (in the tin – into the cup), etc.  Back then I couldn’t remember that after I’d been for a wee I needed to pull my pants up before my trousers and was always trying to pull trousers up first.  I found myself standing at the basin for a wash forgetting what to do next.  I had to write lists of every single thing I needed to do that day just to function. 

Sometimes, even now, I catch myself knowing I am now going to brush my teeth and having the toothbrush in my hand but momentarily forgetting what and where that stuff is that goes on it … paste … oh yes it’s in my hand and it’s … toothpaste!  Yes, that’s it.

I have been giving thought recently to why I can blog and email but struggle with the phone and face to face.  Is it really a cognitive problem or is it fear? 

Well it’s both.  Often it’s the cognitive problem – it’s the listening, then comprehension, then reacting, then reading my reaction, then censoring if appropriate, then responding.  It’s a complex process and my brain stumbles sometimes.  And the times when it seems to working fine – well then it’s fear, but it’s fear of this stumbling starting up mid conversation.  Once it starts the stress comes creeping in and that fuels the problems.  With email and comments and so forth – I can respond in my own time, slowly, deliberately – I can read it back and I can use the delete key.

So I’m not hiding.  I’m coping as best as I can.  The choice for me isn’t human contact or internet contact.  For the majority of my time it is a choice between internet contact or no contact.

I have heard myself say many times in social and formal situations – “Erm, no.  My brain has gone.”  I don’t think anyone I say it to (except maybe Paul) realises what that really means.  That there’s a big fat blank empty space in my brain.  It’s not just losing a train of thought – it’s losing everything, even if it’s just for a few moments (which usually it is thank god).

I’m not sure how to end this writing.  I can say more, I wish I had said less.  But I know I’m tired now and I feel sure I have covered the big points – I hope you have managed to unpick some of it and forgive the sloppiness. 

I know it’s not the clearest writing ever – but you see I’m having some problems with my brain today.

The ‘You Get Better or You Die’ Myth

Having failed to get an appointment with my ME/CFS friendly doctor I managed to get on her “ring me back” list yesterday to request a new sick note for work and a repeat amitriptyline prescription before she goes on annual leave.

Except she had a crazy day and forgot to ring me – so her super chirpy lovely colleague phoned me instead.

“Can I help instead?” she asked me and with a dread in my tummy I swallowed hard, knowing she could give me the functional things I need but perhaps not the understanding. I explained what I needed. 

“Would you like me to write on the sick note that you are gradually getting better?” she said.

“NO!  No I don’t”

“Oh.  So you don’t want me to put anything like that on the note?  It’s just some employers like to know you are getting better, getting gradually better.”

“But I’m not getting better.  I’m not better at all.  I mean my pain is better because of the medication but nothing has changed.  The fatigue …. The exhaustion … It’s still the same.”

After a little chat she remembered me – remembered seeing me back in June 2006 just before I got married.

“Oh god – you’ve had this for a long time haven’t you?”

Huh – like – yer.  Hello?  I have ME/CFS.  I am like, er, chronically ill.  I’ve accepted it – why haven’t you?

It ruffled me a little.  It reminded me of the “patient role” – you either get better or you die.

Doctors often struggle with chronically ill patients that don’t respond to treatment, don’t get better and don’t get worse.  In fact time and time again we read that the majority of CFS patients get better typically within the first year, or else within four years.  Yet there seems to be increasing evidence that sufferers achieve remission, not cure – and are often reluctant to continue or re-establish discussions with so many of our doctors who struggle in the first place with us not getting better and offer little to support the chronic sufferer.

“The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the “miracle” of modern medicine, and somehow the lack of recovery is often perceived as the patient’s fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, “Stop complaining. You simply must adjust.” Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word “adjust” too often means “resign,” “settle for less than a desirable existence,” and “surrender.” At its worst, “adjust” is just another way of saying “You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope.” All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.”

from Coping With Chronic Illness

Illness roles
People’s understanding of illness is based mostly on acute conditions. We understand a cold or a broken leg. People are either sick or healthy. The sick and healthy roles are well understood. Sick people complain, look ill, and remain inactive while they recover, which is usually within a few days or weeks. This is true for acute illnesses or pain. We also have an idea of what an invalid is. This is a person who needs to lie in bed being cared for long term. But what about the role of someone with a chronic condition that is not totally disabling? Someone who can go for walks, for example, and do some errands, but has limited capacity. This role is not so well defined in our culture.

Interestingly, there are some traditional cultures, where the person with a chronic condition (especially if they are mid life or older and female) is not expected to do anything or really function. They are put into the ‘invalid’ category and have trouble being allowed to do things that would be more functional.

People’s expectations
Based on the well-sick-invalid framework, you are allowed to be sick or limited for a while. After some months, people will be expecting you to be back to ‘normal’ – that is, a healthy, fully productive state. If you are not, but you look ok on the outside, there may be misunderstandings, rejection. Some people judge you as lazy, exaggerating, or accuse you of faking to get insurance benefits or attention. Or they expect too much of you, overestimating your current ability. Dealing with people’s misunderstanding and judgment, suspicions, and assumptions is painful. Having to justify your lack of productivity is an extra stress on top of having the actual condition.

from Coping With An Invisible Condition

I am really tired. Tired in the physical sense and so tired of defending the fact that I am still sick. There are so many things that make having CFIDS so awful…the pain, the fatigue, and, yes, the attitude. The attitude of doctors, the media, and even fellow patients has made the struggle even worse.

I got sick in 1987 and have never been able to return to work since. And unfortunately, I am worse. I have read so often how CFIDS patients are supposed to get better improve over time. I don’t mean to disappoint physicians and researchers, but I don’t think as many people fully recover as the uplifting newspaper articles and distorted statistics indicate.

I am not writing this to depress people. I feel guilty, as if I am not trying hard enough to get well. Every time I read about someone who just got better, I thing, “Why didn’t that happen to me?” Then I wait a year or so and call the so-called recovered person. And guess what? Their recovery was short-lived.

I think that somewhere in all the hope, the patients’ suffering has been forgotten. It must not be forgotten that many people are truly disabled and that many lives have been destroyed. Until the public image of the disease changes, then why should Congress allocate additional funding, and why should Social Security grant disability benefits for an illness the public believes will just go away by itself? “

Guilty Non-Recovery

We’re all learning (or ignorant)

It’s hard to accept the impact my chronic illness and recent acceptance of disability has on everyone around me.  It’s a massive adjustment for me to make but for them also. 

My fear is that they will be distressed, upset, worry and my tendency has been to hide the true extent of my illness. 

I’m learning they fear:

  • adding to my burden
  • not getting things quite right (them being the healthy ones with the non fogged brains)
  • that I won’t get better (which is possible) and then guilt I suppose for thinking I need to be better to be happy, fulfilled, lovable, whatever

Much as I am grieving for things in my life I have lost and things in my life that may never be – I think many of them are grieving too.  I have limitations and I can’t be there as much for people as once I was, I’m not really one to lean on day to day as it takes such a toll on my health, I can’t run about and get things done as before, I can’t pop out for a meal or a trip on a whim.

I’m learning to live again, and so are my family and my friends.  I am so very grateful to have people around me who want to make that change with me.  My blind assumption that they will love me less if I give less does them and me a great disservice.  I’m going to make mistakes along the way I’m sure and so are they – but I must keep communicating with them and trusting them. 

PS: The “or ignorant” in the heading of ths blog post refers to those who choose not to understand, not to learn, not to come with me.  There must be a better word – I’m sure I’ll discover it along the way.


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Push It 11 Sep 2011

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CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.