Tomorrow

For quite some time now for a variety of reasons I have been putting myself to the back of the queue and treating myself with ignore.

Which is wrong.  And I know it is, and am (slowly) starting to do something about it.

My MS is progressing and, like the unwelcome visitor it is, has made itself right at home.  My pain levels are up, my fatigue levels are up.  Other manifestations include a foggy and forgetful brain.  Muscle spasms.  Spasticity.   My hands and legs are reluctant to obey simple commands and I am never quite sure where they are.

Which has become dangerous.  Our shower is on a hob and I have to step up and over a metal lip to get into it.  I have damaged my toes multiple times and I am always bruised .  And I am well aware that a dramatic fall is a real possibility.  Probability even.

So I have bitten the bullet and we are having extensive bathroom modifications.  Extensive and obscenely expensive modifications.  Which will take three weeks to complete.

The existing shower will be ripped out and replaced with a walk-in one.  Which has to be located (for drainage reasons) on the other side of the room so the bath will have to go.  The floor will be pulled up and non slip tiles laid.  Grab rails.  And, since we are doing this much I have agreed to replace the vanity (which has to be moved anyway) with a wheel-chair accessible one (which with luck I won't need for some time).  As an aside, we cannot buy a wheel-chair accessible vanity here.  It has to be custom made.  A stand alone basin?  No problems.  One with a bench so I can have soap, a toothbrush and other things to hand?  Nope.  Hiss and spit.  Some drawers wouldn't go astray either.

I have been wishing painful haemorrhoids on most of the tradesmen who came to give us quotes.  Two of them gave us quotes which included items we hadn't requested and didn't want or need.  They also ignored things we had requested, and included vague statements such as 'if asbestos is present the quoted price will increase'.  When I asked questions they disappeared faster than speeding bullets. 

There is another bathroom in the house but it is, if anything, less accessible than the one that we are having modified.  The work starts at seven thirty tomorrow morning and the next three weeks look like being chaotic.  Builders, plumbers, electricians, plasterers, tilers and painters.  And the asbestos removal team because there is sheet asbestos in the bathroom.  The tradesman we selected tested for it.  $1400 to have it removed and disposed of.  Sigh.

Jazz loathes and detest visitors, particularly white van men, and will piddle copiously and inappropriately to express his displeasure and reclaim his territory.  Jewel will retire to the wardrobe and moult up a storm. Part of me sympathises with them both. 

I am tired and overwrought even before it starts and expect to be largely absent from the blogosphere.

And on a much more serious note my youngest brother is also having issues with asbestos.  Much more serious issues which make my heart hurt for him and his wife.

Between 1968 and 1979, a private contractor from Canberra known as "Mr Fluffy" (such an innocent sounding business name) insulated residential dwellings by pumping friable loose asbestos fibres into the roof cavities.  And my brother's home is a Mr Fluffy home.   The house was insulated before his wife bought it.  In 1990 when the danger of loose asbestos was better understood it was removed.  And we now learn that residual asbestos remains.  And there is no safe level.  At the moment it appears likely that the house will have to be demolished.  And they will get no choice about it.  A compulsory reacquisition and demolition.  When?  No-one knows.  Who pays for it?  No-one knows.  Has the asbestos contaminated their furniture and clothing?  Perhaps.  Testing will take place.  When?  No-one knows.  So they are in limbo.  And worried for their health, for  the health of his wife's children (who grew up in the house) and for that of the visiting grandchildren.  So I have my fingers, toes and eyes crossed.  Which adds to my mobility issues.

Have fun in my absence.  I will miss you, but will be back in the fullness of time.  And with luck will be able to stop in on the weekends at least.  

Japanese Gardens

The Smaller Portion has been telling me for a while 'We never go anywhere, we never do anything.'  He is right.  Guilt got to me this week and I agreed to go on an outing with him.

He chose to go to the Japanese Gardens at Cowra, some two and a half to three hours drive away.  We have been there before years ago and both liked it.  It is hot at the moment, and I am not at my best in the heat, but off we went.

It was truly beautiful, and I love the meld of the exotic and the native plants.  There are two ponds both stocked with koi carp and both frequented by ducks.

Have I mentioned it was hot?  Perspiration was running down my face (goodness how attractive) washing off my sunscreen.  I got burnt.

When we finished our wanders we were both parched and hungry so we wandered into the cafe.  Full.  Himself was not prepared to wait.  I grabbed a juice each and we headed off.  He refused to look for anywhere else to eat so we drove home.

Today, unsurprisingly, I am knackered and paying the painful price for an overfull, overheated day.  Was it worth it?  I don't know.  It was beautiful, and I did love the gardens.  Just the same at the moment my pain/gain barometer is falling into the negative zone.  Perhaps when I am no longer so tired and sore I will do the equation again.

Not a bird post this time

Lately I seem to have been posting pictures of birds or whinging.  So I decided a change was in order.

This spring and early summer have been wetter than usual.  It is also warming up.  Both my garden and my MS thrive in warm and humid conditions.  I do not.  I do however love my garden and the beauty in it.  So a trade-off.

We have planted many, many liliums - mostly the heavily scented ones which cause River and others a lot of grief.  There are more coming into bloom each day.  And some of their stems are over six feet tall, with up to fifteen blooms to a stem.  I have never seen them grow to that size before.

So is the increased pain and fatigue and decreased mobility/flexibility worth it?  Hell yes.

Another week goes by

This has been another interesting week in the 'may you live in interesting times' way.  I have always thought that phrase was truly ominous.

Monday was way too busy.  I cleaned the kitty litter tray (not high on my list of preferred jobs) and vacuumed.  Then we went into town to take the smaller portion's clock to the clock doctor.  Hooray.  To the stoma clinic for next months supplies for himself.  Then to pick up bird seed (another 20 kilos), garlic, cinnamon and milk.  Home for a cuppa.  Then to the post office to send things overseas.  A big queue which is unsurprising.  I am still unhappy that if you are sending things to the US of A, an additional $9 'security charge' is added to the postage if the article weighs over 500 grams.  Which gifts for my nephew, his wife and their children assuredly did.

Then to the doctor because both of us had prescriptions which needed renewing.  Here is where it starts to get weird.  I have been seeing this doctor for over a decade (and will find another as soon as I can, but that is another story).  For the first time ever she expressed sympathy for the way I am feeling.  It is true that I was/am feeling crappy, but that is often the case when the weather is all over the place.  I went in to get my scripts renewed and she upped the dosage on all of my painkillers without being asked.  Then she took my blood pressure and her concern deepened.  I usually hover around the 120 over 80 mark.  On Monday it was 90 over 80 which goes some way to explain why I have been spinning out a lot.  She checked and it isn't an effect of the medication I consume.  A mystery.   Who knows where it comes from.

She hoped it was temporary.  A wish I share.  Give us this day our daily whinge.

The week that was

The feelings of inadequacy are moving off centre stage in my head.  They are still present, but as a bit player.  And I don't think they ever completely leave me, so I can probably cope with them in the wings as it were.

I have swum more, probably about 2.5 kilometres last week (over two sessions).  Thanks to DJan I am still working on the kick while breathing caper.  Harder than it sounds.  Drat it.  Given their druthers my legs would simply come along for the ride and let my arms do everything.  So I take along a kickboard and one lap in ten is just kicking.

I went to the dentist.  Firstly because I was due to have a check up, and secondly because I have been having significant shooting pains in my mouth.  The pain can come on either side of my mouth and doesn't seem to be triggered by anything in particular.  The result of the dentist visit was a very mixed blessing.  My teeth are all fine, and she took x-rays to ensure that there was nothing untoward happening out of sight.  Sadly, this means the pain is neurological.  I never thought that I would see the day where I was hoping for the dentist to find a decayed tooth or teeth.

I have finally made contact with the farmer that I was to talk to as part of the MS Peer Support Program.  He is doing it tough at the moment and for the next little while I will be talking to him each week, making sure that he is OK and just touching base.

I did a Lifeline shift last week and deserve brownie points for not telling one of our callers that he had behaved like a complete prat and was reaping what he had sown.  And yet more brownie points because I saved my laughter till the call had ended.  The poor possum had behaved badly for a number of years, was found out through his own carelessness and was appalled at being called to account for his actions.  Though I can't really climb too far up the path to the moral high ground myself without risking a fall.  The rest of the shift was the usual mixture of grief and pain.

On Friday I went to an exercise class at the local MS centre.  While I am a member there I try and avoid the place because I want my life to be about more than MS.   A lot more.  The class they were offering meets my needs though.  It is designed with people with MS in mind, is relatively gentle, and should improve both strength and flexibility.  And it was cheap.  There were only two of us participating which meant that I got all the attention (and then some) that I needed.  Sadly the other participant is showing strong signs of wishing to stick to me closer than glue.  Being moderately antisocial I am not happy about this.  Time will tell.

We have planted the Sumo Liliums, Calla Lilies, Columbine, Hollyhock and Sea Hollies  I ordered.  It is expected to rain gently for the next few days which will be good for them and also for the dahlias currently sitting in a box on the kitchen floor.  Or it will be good for the dahlias when I get around to putting them into the ground.  I have weeded.  More required.

The smaller portion bought me a book of logic problems so that I am compelled to exercise my brain.  I am currently reading 'The Chocolate Wars - from Cadbury to Kraft; 200 years of Sweet Success and Bitter Rivalries' and 'The Brides Farewell'.  I usually have a novel and a biography of some sort on the go at any one time.  The novel for reading in bed.  I cannot go to sleep without reading at least a little.  Paperbacks only.  Hardbacks hurt when they fall onto my face. 

It was a busy week, and probably too busy because I feel a little like chewed string, but I did at least get quite a lot done.  Not forgetting taking time out to watch the birds.

I am having

an attack of the inadequacies.  I don't know where it came from, but it is seriously demoralising. 

I was on call for Lifeline last night and still on the phone at half past midnight while the smaller portion and Jazz slumbered blissfully.  Jewel was helping me, and I had to fend her away from the phone at regular intervals.  I do not think the sounds of either a purring or a complaining cat would have been positively received.  A very sad call, but not a tragedy and I think the three of us (the caller, the telephone counsellor and I) came out the other side reasonably OK. 

After the call I was over Jewel demanded some one-on-one time.  She wanted to bat her acorn around the kitchen, and be applauded for same.  And then she knocked it under the fridge.  I flatly refused to even attempt to get it out for her and got her another one.  Which she rejected emphatically.  So she and I both retired to bed with the huffs.

This morning I was wearing my MS peer support hat.  I rang a person I have been recently matched up with at 11, as previously arranged (by phone and by mail).  The call went straight through to voice mail.  I left a message saying I would ring back in half an hour.  Through to voice mail again, so the new message said I would ring back at 12.  Voice mail again.  His phone was obviously not switched on, or he had been on the phone the whole time.  So I left yet another message saying I would ring at the same time next week.  Seriously frustrating.  And of course I had to document both my attempts and eventual failure to get through.

In the middle of all that the phone rang.  A person, also with MS, also providing peer support.  She has been matched with someone in a heart breakingly difficult situation and wanted to talk it through. 

Somehow I did those things, while simultaneously feeling an abject failure in every aspect of my own life.  Very, very weird.  The human psyche I mean.  It is a grey day here and I am really, really hoping that a modicum of self confidence will emerge with the next rays of sunlight.  And that I can go out to play in the garden again.

Bones, Books and the Brazilian Edelweisse

Good news:  after my mishap with the wheelie bin there are no chips in either my tibia or fibula.  My face is only a bit scabby now, and many of the abrasions are gone, or nearly so.

Less good news:  The physiotherapist is wondering whether I have broken bones in my foot.  I am currently encased in a compression bandage from toes to knee.  Not stylish and, which affects me much more, too warm for my liking.  Three of the toes poking out the end of the bandage are the attractive dark greenish grey of an approaching storm.  A big storm.  The bandage has reduced the swelling beneath my knee, so there is good news there too.  The idea is to wait until next week and see the physio again before rushing off for more x-rays.

On the books front:  A while ago, after I received these books as an unbirthday present from my nephew's wife, I said I would post a review when I had finished reading them.  Which promptly escaped my mind.

I read 'The Lust Lizard of Melancholy Cove' first.  It could probably best be described as a combination Sci-Fi, Fantasy, cosy murder mystery, romance novel.  Sound confusing.  Well it is.  It gallops across the genres taking flying kicks at the accepted conventions (and a few other sacred cows along the way).  So I giggled my way through it.  Good literature, well no, but fun just the same.

I then moved onto 'A Dirty Job'.  I found myself bookmarking my place and wandering off and picking up other books, not once, but several times.  Not a good sign.  I did (finally) finish it, but didn't like it nearly as much.  Many of the same elements are present, so perhaps I just tried to read it too soon after the first. ( And I warm so much more to Terry Pratchett's take on Death.)

One of the books I am reading at the moment is completely different.  It isn't a recent publication and I picked it up from a remainders table.  'A Midwife's Tale:  The life of Martha Ballard, Based on Her Diary 1885-1812', by Laurel Thatcher Ulrich.  Martha Ballard lived and worked in Maine in the USA.  Ulrich intersperses excerpts from the diary with information she has gleaned from available historical records, including court reports, title deeds and other diaries. She then ties the information together to give a much more comprehensive picture of Martha Ballard's life, times and the society she lived in than I would have gleaned from her diary alone.  It isn't easy reading, but I am finding it completely fascinating.

And to something different again.  In July, while buying a present for a friend I fell in lust with a Brazilian Edelweisse and bought it for myself.  When I first bought it, it looked a little like a badly baked donut.  It has been sitting on the kitchen window, and how it has changed.

And there are more shoots coming from the base to come.  It is one of the first things I focus on when I come into the kitchen to make my first cup of tea of the day, and I am really pleased that I weakened and bought it.  I just noticed that it has come out even more today!