Monday, 27 November 2006

Equipment File

Equipment File: Entry No. 1

File under Office Equipment/Medical Equipment/Beauty Gadgets/Misc.

The Doctors Surgery receptionist left a message on my answer phone this morning:

"Ms Sally, when you come in to have your staples removed on Wednesday, the Nurse said please bring the stapler, sorry, staple remover, with you."


(See Pic and Post below)

Saturday, 25 November 2006

I really must be careful

I really must be careful about lots of things. Not to run my hands through my hair or wind it through my fingers, not to sleep on my left side, not to sleep on my right side.

In this enforced rest I must be careful to limit my using this laptop, as I don't want to loose control of my digits as I was afraid of before, but I have got over my fear of why it makes my arm and hands tingle, because it didn't do it before I installed the wireless card and driver, it is doing it less since I un-installed them, and I am placing all responsibility for sorting it out on the dealer and if not them, IBM through the extended warranty. If they don't, then I will have a problem to solve.

Prioritising energy on problems is the name of the game many of us play.

I must be more careful in censoring the titles that occur to name my posts, some of which have attracted very odd placings of Sally on the internet, which if I follow via my site meter, lead to strange lands and even stranger people in other lands, geographical and psychological. Not that I am referring to the benign people who stop by for a while on a semi regular basis. Nice to have you visit.

So I didn't use the drug and metal staple inspired title that has been creeping around my head all afternoon. I don't like my staples, I don't want to refer to them as 'my' staples, I don't want to own them. They are big dull metal things, bigger and tougher than the staples in my desk stapler which is bigger than my small chair-side stapler (my mother has ornaments), and which occasionally glint as they catch the light, so I am told; evily, I imagine. They have their own voice, they creak when I raise my eyebrows, so I cannot assume a quizzical look until they are removed.

I want a photograph of them (not of me, just my forehead) so I can remember just how aggressive they look. They are beginning to take on an imagined personality, sitting there fixed to me, not moving, just clamped onto me, alien, malign. It (my attitude to the staples) could just be the drugs. Which I am taking to deal with the pain of the staples. I blame all the pain on the staples, whether or not it is generated by them. See, I am referring to them, as 'them'.

I know where I am with the Methotrexate, I know it depresses me, sends me down, darkens the world around me for 48 hours. I know that if I have an illness such as a cold, on top of the Lupus, I feel negative about the world and my prospects in it, and of the prospects of those that are nearest and dearest to me.

My stapled appearance is an improvement in that the staples look better than the strips of white surgical tape that I gingerly pulled off the staples yesterday. Nobody would wear a white headband that wide that far back off the forehead, I said to the friend who was trying to reconcile me to my appearance. Now she thinks the v-shape of metal staples looks like one of those toothed plastic headbands. Would I !? Never, nor a white head band.

Like Mrs Munster, for many years I have had a white streak in my hair, so maybe I should just find a suitable husband and a suitable wardrobe and go with the flow.

Go BoHo with scarves, said another friend. I don't have the wardrobe to temporarily become a bohemian, I cannot afford such wardrobe diversity on state benefits. Everything has to fit the use/occasion/comfort/warm/cool/dry equation. Although if I did, if I could, I would disappear for a few months, because BoHo would be so far from my usual self, I would be unrecognisable.

I could, I did, overcome the wheelchair's effects on my self-image, re-forged my persona when I had to forgo the dancing, rambling, swimming, singing. But this is, temporarily, flooring me. Perhaps because it is temporary, or because I have not yet arrived at the position of dealing with it, or perhaps because I am very afraid that I will be left with something worse than the osteoma that was protruding from my forehead.

Get over yourself Sally.

The Goldfish has done it again, with her magnificent hosting of the Disability Blog Carnival No. 4, a feast of fellow crips writing about their route on this path.

Charles Dawson's contribution is spot-on, and he keeps on keeping on, at present bemoaning the mud with his ducks, always inspiring and entertaining, despite persistent coughing and fear of being put down by the vet.

Over at where the revolution starts; Crip World Domination (copyright Gimpy Mumpy) in answer to her Guardian Party post, I have suggested a service-user led Crips' Telephone Answering Service. For those days when we really don't feel up to it, or don't give a ....

The Quaker Agitator is a daily reminder, a daily witness, to the reality of the war that we are all responsible for.

It is good to see that Geoffrey Chaucer has visited his blog recently and Lady Bracknell's Editor has posted some charming pictures of her visit to Buck House to receive recognition for her sterling work. Congratulations !

Thursday, 23 November 2006

Oh ! What a beautiful morning ... (I'm Home !)

I am home, and how wonderful it is to be Home; the sky is blue, the rain drops are sparkling on the bushes outside the window. The leaves have blown off the trees so I can see the far hills' horizons outside both bedroom windows, either side of the river valley. Without the leaves I was able to watch a Lesser Spotted Woodpecker climb along the Big Tree's branches upside down.

How wonderful it is to return to proper Earl Grey tea in one's own china mug, but I wish I had one of these which would say it all for me. What follows is not for the faint hearted, it is primarily to record it for me.

I remember coming round from the anaesthetic saying: Is it gone ? Yes ? Magic ! I do hope the neuro surgeon did not take offence at that seeming dismissal of her expertise and skill in removing a quite large skull osteoma and a baby one adjacent. Quite a lot is still numb, quite a lot is not and boy does it hurt ! The top of my head must have been given a week's supply of anaesthetic because I cannot feel my scalp; perhaps the medics were being kind and gave me an extra injection, to see me through the next few days. I have to brush my hair looking in the mirror because I cannot feel what I am doing. But I can feel the pain of a tight clamp around my head, and feel the weight of a heavy skull cap of immovable clay (this is an imaginative not literal description) and it is sore ... AND I have a headache, and my head hurts, and all those different things are happening all together.

Incredibly, I had a whole day without tinnitus. Without the high pitched screech that always accompanies me, somewhere off the top left of my head. Without the loud white noise in both ears. A whole day without the feeling of fullness and pulsing in my right ear - imagine a large sea shell glued to your ear and that whooshing turned up to full volume. I had a day when (I thought) I could think straight without all that noise. It was nice while it lasted. Not quite a cure for tinnitus, but for a day I could imagine it might be. Maybe there is something in DIY trepanning after all!

I remember coming round from the general anaesthetic shivering with cold and then gulping down oxygen as if I had a raging thirst for it. An hour with an oxygen mask must have helped somehow, because I felt wonderful. I thoroughly enjoyed the electric hospital bed, infinitely adjustable under my shoulders, head and knees. I would like one at home please.

Back home reality, and the swelling, hits. I have a huge swollen
forehead bulging out, two black eyes, and bruises along my cheek bones. I have staples standing out from my skin, holding my skin to my skull, so that my forehead's skin isn't pulled down my face by all the swelling - well, that is my explanation - the staples are like a little fence running along the top of my forehead along the hair line all the way from one side of my forehead to the other - I am not going out for at least a month ! Or two or three or four (aarrgh, don't panic Sally, don't panic). I have the hair re-style, now all I need is the outfit to go with it, and a time machine, and I would not look so out of place back in the 12th century.

I am too tired for any 'work' or visitors, except staff (yes, home helps and PAs are wonderful, I could not manage any of this without them), and my 'Bump' - the one I gave birth to twenty eight years ago. So this is going to be a bit of a holiday. The stair lift man came and fixed it yesterday, asking me through the door (I cannot be seen, I am too too frightening!) did I want it to go a bit faster ? Yes please ! Result.

I have lots and lots of lovely drugs so I am feeling distanced from all the tingling throbbing pulsing aching stuff I can still feel. My GP is ringing me daily, bless her. I feel well looked after.

I am so, so glad I did not know it was going to be like this beforehand. I am so glad my training and working life was in employment law, counselling and local government, rather than medical stuff, because I really did not know what I was letting myself in for. Ah well, its over now. Thanks to my guardian angel, friends and bloggers for all the positive vibes and cards and messages of support.

Sunday, 19 November 2006

I can't title this without swearing

So, ...., ...., ....ity, f...

My laptop is causing me physical problems, someone very kindly picked up my blog about it and posted it on The Science Forum but I cannot engage with that without ... physical problems caused by my laptop, let alone cogdysfunc to relate it and respond to further questions.

I cannot engage with it, because I am not taking the tablets that give me a few good days each week, which enable me to engage my brain and think things through.

I am not taking the tablets because I am going into hospital very very soon. Possibly. Maybe.

On the way out of the house to the hospital (a different hospital) on Friday morning, to see the Rheumatologist, I fell. Only two inches down a step, but OMG you should see the state of my foot. Three times the size and black. It hurts. The Rheumatologist saw it an hour later, before swelling and bruising and didn't think I had broken anything, but my driving there and back was a mistake. Rest it, she said. I am awaiting advice, as to whether this will complicate surgery. Or even postpone it. Again.

On Saturday the stair lift failed. My only loo is upstairs (until Adaptations and Disabled Facilities are built). Within two hours the technician replaced the batteries. Excellent service.

This afternoon the stair lift failed again. The technician (again, excellent service) said it was the motherboard. Should be able to get the part to fix it by Tuesday (Tuesday !).

So I have spent the weekend going up and down the stairs seated on my arse.

At approximately 8 am tomorrow the world will begin to sort this little lot out.

I may be back. Or I may be gone. Or I may just stay here until after Christmas !

Which would be quite good actually, because then I can go to all those concerts and carol services and exhibitions and films that I have not been thinking about because I don't want to face the world with a strip of hair shaved off and stitches across the top of my head.

My 'Bump' bless her, arrived this afternoon with her entire collection of silk scarves, for me to practice fetching arrangements with.

I would rather just stay where I am and let my foot heal (joke! foot - heel !) and watch the Rugby. With a remote control to let visitors in the door. With a laptop that does not fry my hand and arm.

But if I don't go into hospital because of my foot, I might miss Mac from Green Wing on his motorbike.

(Pic goes here ... except ... Blogger has joined in the general mayhem and won't let me upload a fabulous fantasy picture.)

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Saturday, 11 November 2006

Fight the Good Fight

I don't remember him because I never knew him, but I do remember his picture. His presence in my Grandmother's heart was reflected in the large sepia photograph of him in uniform hanging on the parlour wall. Her brother, my great uncle Herbert P.

He was a regular soldier and had served eight years with the 2nd Battalion of the Sherwood Forresters. He was stationed in India when he was recalled back to England to serve in the Great War in France. He was wounded within a few months and returned home to Derbyshire, to his parents and his two sisters, to convalesce, then went back to the battle field and was mortally wounded during an attack, east of the village of Ginchy. He died of his wounds a few days later on 27 September 1916 and is buried at St Sever Cemetery, Rouen. I know this because of the world wide web, and because of the hours that veterans have spent researching and posting military history on the web.

I know that my father witnessed Airforce comrades burnt to death; he did not speak of it, but it was given to me years later as an explanation for his mental illness. I have friends and cousins, now retired, who have served in the Airforce, the Navy and the Army. An acquaintance has just returned from Afghanistan. There is a large Army training camp close to this town. War continues to be part of life in this supposed peace time.

Today village war memorials are the focus for veterans, young and old, to remember, and in this village, they stood and stopped the through traffic while the bugler sounded the beginning and the end of the silence. I stood with the windows open and heard it clearly echoing in the quiet minute.

These echoes are reminders that so far we all have been incapable of dealing with the negative reactions we have to others that are different to us. We react from fear. Psychologists have attempted to analyse the psyches of those that led people into war, and researched the reasons why people followed them.

Individual lives lost, families devastated, blood lines ended. Every day. All over this wonderous planet. I wear my Poppy and remember. And thank those that continue to Fight the Good Fight.

Waves and Vibrations

Way back in July I pondered wireless broadband, but it took some time, and money, and also necessitated the steep learning curve I described.

I thought I had it sussed. Got the hardware; the wireless card, slipped in the extra RAM which enabled the included security software, finally got to grips with it all. Even managed to follow what the BTBB help man was explaining.

Then I got scared, because the more I sat amongst the radio waves bouncing around the cottage, the more my hands and arms tingled. I know that the Lupus gives me active inflammation in the soft tissues and I have seen the pictures when they filled me with radioactive stuff to see where the disease was active; finger tips to upper arms was very busy. So I took the additional tingling very seriously.

I retraced the steps of arriving at wireless broadband, dismantled the soft and hard bits on the laptop and was left with subtle vibrations under my wrists and finger tips. Now, until that is solved, any time spent on the laptop results in hours of tingling, and more dropped cups, plates, books, files and phones.

I could only stop what felt like the harm that had been done to my fingers, palms, wrists and forearms when I stopped all laptop use for a week. Returning to the laptop resulted in a major return of the tingling then pain and weakness, making the daily practicalities of life very tricky.

What I think will be The Solution has emptied my piggy bank. Until it is installed and fixed I can only do this laptop blogging tonight, at the beginning of two days of weekly drug induced inaction, when the additional weakness and tingling uselessness will not be so problematic.

This all by way of explanation. I miss this. I feel as though I have been transported back into a dark age of being disabled and housebound. I am not by any means housebound - I have enjoyed a few muddy 'walks' in the wheelchair and Mozart's Requiem at Poole Lighthouse was wonderful - but I am cut off from this vitally important virtual life, and virtual friends.

I am cutting it a bit fine; trying to get the laptop sorted before the 20 November - when I submit to having my scalp peeled back (no, actually, peeled forwards - don't think about it too long !) and the skull osteoma shaved off. My GP tells me I will be fine, which I believe, but I have been warned to expect a "set back", a reaction to the shock to the body systems, a response to the intrusive surgery, which might trigger a Lupus flare. The jokes about not needing a face lift are wearing thin, and I am having to seriously engaged with what I will look like until my hair grows back ...

All these are minor problems. I feel empowered that I have found a path through this particular maze. I have been thinking each day of all the other bloggers whose paths are difficult and whose problems are not so easily solved.