Archive for January, 2009

My Secret Shame

Privately, secretly, I carry a terrible shame. It’s all about the state of my home.

I’ve been sick to the point of incapacity for 2 and a half years now. So it’s been over 2 and a half years since I could do any proper housework. 

Growler is brilliant and he does the best he can.  But there are still jobs that don’t get done.

Clutter is piled up around the house. Stuff put in piles and left in boxes to sort out another day. Another day which never comes.

The garden which I love continues to grow wildly with no-one tending it.  Growler does the lawns and will apply weedkiller when asked.  But the hedges and shrubs grow and grow.  Last year I paid £400 for a firm to spend one day cutting things back to a tidy and manageable level.  Once the warm weather comes most of the work will be undone.

I established some time ago that I am not well enough to tackle the gardening even in small amounts.  It is physically too taxing for me.

The same for housework.  I do the odd thing infrequently but it’s such a tiny amount. Largely things stays the way they are and things gets dirtier.  Clutter mounts up.

I am utterly ashamed.  I am ashamed of the way I live, the way I have become.  Of my failures which are evident in the dust and the grime, in the hedge encroaching the pavement, in the shrubs closing in.

I am so ashamed if I think about it for too long I could weep.  So ashamed I don’t invite people to stay or to visit because they’ll see how bad it is and see my failures.

I wonder if the people who 2 years ago said “If there’s anything I can do to help…” really meant it.  Whether they meant fetching a pint of milk or whether they would get their hands dirty and do the things I really need help with.  But I’m too ashamed to ask and too ashamed to tell them the grotty jobs that need to be done.

Because where I need help is the things which aren’t cosy and aren’t talked about.  I need people to come and clean for a hour, or come and garden for a hour.  To come and sort out clutter and ferry stuff to the charity shop or flog it on ebay for me.

I guess there’s a quiet thought about cleaning and gardening and decluttering. That I have a husband so he can do it.  But there’s only so much one man can do.  He works full time to support us both whilst caring for me.  He takes care of all the bills, washes and cooks, hoovers and looks after the cat, shops and takes out the rubbish. He baths me, he plans for me, he leaves me food and drink, flasks and cooked meals to get me through the day.  He soothes me when I’m pain and when I’m not coping.  He holds me when I’m scared and when my heart is breaking.  He worries about me 24/7.

How can I ask him to do anymore?  How long before he buckles from the load?

It shouldn’t fall to just one person.

So I need help. And the shame stings.

I am ashamed I don’t have friends.  That while I was well I didn’t make friendships which means now I have very few people to call on.  I suppose there’s a chance even if I had they wouldn’t have stuck around until now.  Chronic illness changes friendships I know.  But I will never know because I didn’t give more of myself to friendship when I could.

So it seems that the only people who really want to get stuck in to help are Growler and my mother. My mother who is 65 and has her heart problems so is not up to the task but so desperately wants to make things better for me.  I won’t watch my mother give herself palpatations to save my own health.

I don’t want to blame other people.  But I wish others ‘got it’ a bit more.  I’m not going to ring them up and say “will you come clean my floors for me?”, “will you come wipe the mould off the window frames for me?”, “will you come clean out my drain?”, will you come wipe down the doorframes where the cat rubs his grotty face against?”. 

Maybe they think I’m happy to live like this.  Maybe they’ve forgotten about me.  Maybe they are waiting for me to ask.  Maybe they don’t really want to help.  Maybe I don’t really have anyone to call on.  Or maybe they think that it’s been 2 years so I must have found a way to cope by now (rather than it’s been 2 years and things must be really bad by now).  Maybe they’re just too busy.

It’s almost certainly my fault for staying quiet.  But how do you ask for help with things that are so personal and are your failings?

I know some people say “my house is a tip” but I really mean it when I say mine is dirty.  I know if I was well I could get through most of it in a weekend (maybe two).  If I just had a healthy young substitute.

I can’t afford to pay for a cleaner. I worry what they would think.  I’m also told they will usually only clean once you’ve tidied which isn’t much use to me.

I’m frightened and ashamed to ask Social Services if they can help.  Frightened that their idea of helping will be to offer help with meals and washing when what I want is help with cleaning and chores.

I want to run away.  I want to leave this house and find a clean new one.  To start afresh with less rooms and less garden.  But I worry sick to my stomach that I’d just make the new place as dirty as this one.  That I’d infect it.  I’d have a new shame to face.  Besides the obstacles to moving are not insignificant and would mean getting rid of the clutter and cleaning this place anyway.

I’m seriously considering trying to hire a gardener because the thought of it getting more out of control makes me feel nauseous.  That if I can find someone who’ll come just twice a month maybe I can just spend the money and make sacrifices elsewhere.

As for the clutter and the cleaning … I started a few weeks ago with Growler to do half an hour of ‘chuck or recycle’ each weekend.  We made a small but encouraging dent.  So it could work.  Less stuff would make cleaning a lot easier. For someone.

I’m wondering whether to directly ask my brother for help. Perhaps with ferrying piles of stuff to the charity shop.  He lived with us for two years and never volunteered to help me.  So it’s a long shot and has potential to fail.

Last time I gathered my courage and when a friend voluntereed to help do my filing I was elated that someone was going to help.  And that they were happy to do it.  She never came.   Her own life get too busy.  The filing is still not done a year later.  It was a crushing disappointment.

I considered writing an open letter to everyone I know saying “I need help”.  I need help with decluttering and cleaning and I need people who won’t judge me for letting things get so bad.  But I suspect the one’s who would step up to help would be the ones who have enough on their plates and/or are the most elderly.  Or that I’d be overwhelmed with people wanting to help but none of it would come. 

If they did come I am sure I would feel overhwelmed by the gift and by the highlighting of my own inabilities.  But maybe that’s just something I have to face.

So what to do. What to do.

Seems my options are:

a) Keep ignoring the problem (it will only get worse). Not an option really.

b) Chip away at it little by little and hope I can catch up eventually without giving myself any setbacks

c) Cry out loudly for help and swallow my pride, hide my shame

Advertisements

Proof! It’s not in my head … it’s in my cells

M.E. is not in my head – it’s in my cells!

Dr Myhill has published a paper with a study showing how mitochondrial disfunction relates directly to level of incapacity and illness in ME/CFS sufferers.  In effect this could be a single blood test for diagnosing ME/CFS.

More research is needed to build on the findings of this small sample. What they haven’t established of course is whether this disfunction is primary to the conditions cause or a secondary feature. But it’s promising news all the same.

I’m eagerly awaiting the translation of this paper from all the science talk.  Dr Myhill does this to a certain extent on her website talking about cars and batteries and giving some advice on treatment/good practice.

I’m no expert but what did excite me was this diagram from page 11 of the paper. In the first diagram, A, it shows subject’s CFS ability scale across the bottom and level of mitochondrial energy along the side.  (The ability scale number was reached after other causes of patient’s symptoms had been explored and appropriate treatments had been tried).

Chronic fatigue syndrome and mitochondrial dysfunction - diagram from page 11

Chronic fatigue syndrome and mitochondrial dysfunction - diagram from page 11

Broadly speaking it looks to me like the more severe the ME/CFS the lower the mitochondrial energy score.  And none of the control subjects had that same low level cell energy.

Now unless you have £249 to get the necessary blood test(s) done privately through Dr Myhill it’s unlikely you’ll be having this as a diagnostic tool in the near future.  Let’s face it there’s loads of great research going on out there informing theories about this illness which are a long way from bringing solutions into our healthcare system.

But it’s refreshing to be offered yet more insights into the biomedical nature of ME/CFS.

Especially as the Judicial Review into NICE Guidelines on ME/CFS will be taking place in a  few weeks time on 11 and 12 February 2009.

It is extraordinary that a set of clinical guidelines into a condition has not only been called “unfit for purpose” by leading ME groups, but that people with ME felt so outraged about the guidelines that they want them challenged in court. Such is the depth of feeling about the process used to determine these guidelines which offer CBT and GET as frontline “treatments” for the condition and disregarded the studies, papers and first hand expertise of specialists in biomedical research into ME/CFS.

You can, if you are well enough, attend the court and witness the review for yourself. This supporters site gives you all the information you need to attend on 11 and/or 12 February 209.

You may also be interested in:

January Stikes Again

Seems this shuffley-footed, difficult to describe, fog of yuck isn’t just menacing me.

Cusp talks of M.E. snakes and ladders and describes how I’ve been feeling and struggling to put into words:

Photo by ecstaticist

Photo by ecstaticist

“I am at that point (as is oft the case with PWME or any other chronic illness) where I could shake a fist at the sky and tell the whole damned thing to clear off, leave me alone, I’ve done my time, I’ve made my amends, done all the right things, listened to the advice, listened to the doctor, the healer, the insurance company and none of it has done any good. All that works is time passing and being careful and cautious and biding my time. I feel like I’m in some religious order locked away from the world.”

 

Then Signs with a body electric speaks of a:

“creature who every day wakes up with me and says that today is the first day of the rest of your life and everything might suddenly, inexplicably, be fine.
I am making ridiculous plans for things that I know I am unlikely to do.”

Yes! I hear the creature too.

Growler tells me that many people are struggling to get back into the swing of things after Christmas and to get back to normality.  So my lack of normality is probably just normal.  He also says that I shouldn’t underestimate the impact of the unusually freezing conditions we’ve had recently – because it’s bound to have some impact.  As other minor things can often have a much bigger effect on me and M.E. then the logic does stand up.

Photo by ArtemFinland

Photo by ArtemFinland

I feel a little bit more M.E. normal and a bit more like this is just another passing thingy. (Lack of eloquence today).

What has been different this January I realised today, is I had an expectation that returning to my pre-Christmas routine and capacity would be easy and took it as given.  I scaled back Christmas, did a lot less despite having a bit more reserve, so figured it would be easy to continue OK after a little Christmasness.

But I guess it didn’t quite work like that.  So January bites again. 

Jan 07 was really awful – I was shattered and around 10%. Jan 08 was better but I had a horrible chest infection which lingered on and on and dragged me down.  So Jan 09 is in fact a big improvement.  That’s almost a linear progression folks!  I will find a positive here even if I have to rake over bad times to find it.

Get More, Want More

My cognitive function has improved significantly over the year and a half.  I find myself able to do much more and even to be in contact with some from the “outside” world who make no allowances for disfunction or inacapcity simply because they do not know me as someone who is ill in anyway.

I find my ambitions increasing. I want to not only create art for myself but art which can be sold and can be collected. Yet I still lack the full range of function and capacity and sheer physical and mental resources to do ALL those things which must be done to be successful in this venture.

I look for advice and my head spins.  I hear criticism of those who wait to be discovered or who expect others to engage and nurture success for you.  I don’t choose to be passive – I am there because it is my forced hand.

It seems to make success I must do one of the following:

  • Be smarter than the average person. I must be creative and innovative within the limits I have (and also be able to constantly monitor what those limits are) despite not having full cognitive function to figure these things out or even to remember them
  • Redefine “success” to something I can actually attain. Is success making x amount of money or can it be as simple as finding an audience, or getting enjoyment from what I create?
  • Wait. To be better. Or to be discovered. Even when both are longshots.
  • Forget about it. Either in a negative way and dash my dreams. Or in a positive way and shift focus back to doing what I can do and being happy with that.

With every improvement in ME/CFS there is a joy and elation which seems to be followed by an inevitable desire to want more again.  If I can get out of bed before lunchtime it’s not long before I want to be going for a walk, or doing chores, or doing just that little bit more and more and more.

Motivation is not an issue with this illness. Desire to do more, be more, is never a problem. 

The heavy burden is rationing the resources I do have out amongst the many needs and wants, whilst letting go of the unnobtainable things, all while keeping sadness and negativity from taking a hold.

I cannot, whilst I am ill, try to be the average person. I can only be all that I am able with what little I have.  I guess I have to apply that to being an artist too.  Just as I have to apply it to being a wife, a daughter and a friend.


Fundraising


Push It 11 Sep 2011

for ME Research

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.