Diary Entries for conker

Throttling back

conker

Woke up to the sounds of my young flatmate working on his car and all my cranky bubbled to the surface. I am spending this morning reminding myself to let go. LEt it go. It means little, that the sinkis a bit full and the schedule running behind; after all, we will get the groceries in, and the big things will get moved, which I can't do alone. Last night I was taken to visit a sick friend and to see christmas lights. let it go.

Turning the Wheel with an insensate hand.

conker

I am back my dear, and back on the MTX, the dirty old drug that I left with wings on my heels in February after a week in hospital with pneumonia. Those unknowing here is the tale; I have had SLE fora long time, and went onto plaquenil and nsaids in 2005 which was all nice and without a great deal of problem until in 2009 my hands and feet suddenly disappeared and I got diagnosed with Sjogrens after alot of scariness. I don't have the right antibodies but a great neurologist and so [...]

Without my butterfly.

conker

I have been up late tonight. Why not I hear you ask? After all, is there any reason she should be tucked up at 9pm, is there an early meeting, an unmissable anything awaiting her? Nopety nope, my dearies, that is not the lupie life really, now is it.

I got plenty of appointments, in fact tomorrow I have my much awaited Pain Clinic, which is favouring me with a two hour 'introduction to pain' session. I have to take a partner. I think this is in case I have to be held back [...]

To the swimmers in the deepest sea, with my gratitude and love.

conker

When did we find that coming up for air was a thing we could forgo? In the thin acid days of the last ten months this talent has beenrevealed to me. You and me, we are the swimmers who went below yet did not drown.

How many times did I break the surface, all desparate crashing arms, screaming 'help me, help', before plunging under again?

I have been away for some time. I would feel this illness pull at my life like the deep cold waters of some swimming pi [...]

The ashes....

conker

I just put the sheets in the washer, the second wash for them, left on the line in a bonfire. Burning the first box of my late husband's papers and like magic in my inbox, an email from my sisterin law. Six months has passed, how am I?

I am a woman who is just out of hospital, having had the first long hospitlisation for her lupus. It was compounded by the rubbish of unacknowledged mourning and all the other stupid secrets kept to protect the rights of others. The probat [...]

Gimptopia is born

conker

The Gimptopian Manifesto

I had Gimptasia and that failed. It was never a sovereign nation, more like an autonomous region, relying for existence on the permission of the nation in which I am embedded. So at the urging of my friend Annie, I have today declared Gimptopia. In this country I aspire. I have my own rules and others must follow them or leave. I can't get into the real world anymore - I ei [...]

The Helping Heart

conker

It was the Wishing Moon tonight. I knew this all day and wasthinking of it as my son and his girl pottered and talked and made plans for the night. They also made the plans for me. The what-will-mum-do plans. I wept again today. I have to type 'of course' because it seems these tears are becoming just another body fluid that I have to deal with. I am very fragile and they know it, so we spent s [...]

The Weeping Song

conker

My son and I used to have a name for a particular corner, we called it Reeky bend. Another one was weepy hollow because it seemed that every time we went round it the Bad Seeds song "The WeepingSOng" was on the car stereo, which seemed like some coincidence to us! My son and me, well let me just say he is the cause of the weeping at the moment, but it is probably normal, and there may be a pinch of lupus, a twist of widow and a sprinkling of surgical menopause leavening this lump.&n [...]

Max walks the line....

conker

Max is a dog. I am not sure that he is aware of this. And that would be my fault. The thing about being this lonely is the way it makes you colonise everything you can get your hands on. Sorry, tinydog!

So today Max has gone onto the dog line in the yard, because my yard is not closed in enough and he escapes all the time normally. As much as I like my neighbours and am pretty happy to let them see my freak flag flying, I am not that thrilled for them to see me in my undies at 7am runni [...]

The normal stuff - is there any such thing anymore!

conker

A dog ate my homework. It is the joke excuse I know. We all know it and I think it is what my life is becoming...bear with me here, I am not finally going off my Lupie rocker! I am that dog and I haveeaten all the homework! LOL. In my house I have realised all sins can be attributed to me. I had not noticed people doing it, or that a lot of anger gets taken out on and directed at me but this year I paid attention and I got to see it. I also felt I wasn't gunna take it.

Whoah up ther [...]

The looking glass - mirror maze

conker

It started then in 2009, and as I think more about it and the tiny things pop up - like today, when I grabbed Max's little pooch present for his chihuahua girlfriend Millie from two doors up thestreet and realised that I had written Minnie on the card - it is then that I can see them as part of that bigger picture that Immunologists describe as developing like the old time polaroids that we used to flap around our heads and wait to see that picture emerge.

I have things [...]

The Random Hedghog

conker

The Random Hedgehog is a wonderful creation of Mr Edward Monkton and it goes like this... " As soon as I start thinking that I am sensible and sane, the random hedgehog comes along and fiddleswith my brain."

I got a package from London this morning which on the cheer the blazes up path ranks very high indeed. it was from my dear Magdalena, my fiance so called, a friend who moved to do her post doctoral fellowship and is now I think a Londoner for good, but who sends me tidbits [...]

Treachery and the Teenage Boy

conker

Last year my son was so upset. My husband and I were moving into separate living and it was very messy; my husband was older and becoming demented. After things were settled, I was assessing the needsfor my child. I hav always been a fairly 'boots and all' mum, but also giving lots of freedoms. My son told me he felt underparented and had done for the year that we had just left. I vowed to him that this would not happen again even though I was ill.

So tonight [...]

The morning pain and Mr Narny

conker

Mr Narny is a crazy banana dog toy. He belongs to my chihuahua Max and he languishes in our garden; in trees, on the porch, anywhere a person might throw him and a little dog leave him when somethingbetter beckons.

Max knows his toys by name. There is Dick Puppet, who is used to play a game where he pushes the toy off the top of the sofa or chair himself. This game is called 'Kill Moosie" after the tiny plush moose I trained him on. It is for when I am REALLY tired! So th [...]

I send everyone else around the bend. Again.

conker

One thing about having any kind of disease where your brain is a bit iffy; it means that people can really mess with your head. I find that since the PN and especially since the MRI which showed themucked up white matter, or what my daughter Hollie called the pissed off poodle, people are inclined to blame any anger I feel on that head of mine.

I reckon this is unfair. It goes like this...not happy with my decision on your hat, holiday, choice of biscuit topping? [...]

Cat for a hat.

conker

I have a little world on my back porch in which I am not ill and I am not powerless. I call it Gimptasia in my photo albums, and when i feel myself drifting into a place where fury is going to fly out and hurt me it is where I go to try to find something real that is good. It used to be the garden; my vegetables and herbs and their progress. i would stalk the yard and the various beds and presto the mood would pass. After I had a big big surgery I couldn't do one bit of garden work, not a [...]

Through the Looking Glass - the second lap

conker

I had been having tingling in my fingers too; my hands had been falling asleep and that crafty part of my brain that I really should just take out and hit with a brick before I let it runa nything to do with my lupus, was taking each episode as a one-off. 'Oh your elbow was on the wooden chair arm" or 'holding the book to read caused that" and other idiotic excuses. I noticed bruises and healing scabs and scars on my hands that I couldn't remember getting. "bo [...]

The day I got a good look at the big picture. Shudder.

conker

It isn't unusual for my left hand to unaware what righty is up to. This has been the case all my life really and I think that the non Lupers must do it too. This year though, it all took a turn for the worst, and considering what had happened in the few years before, that is really saying a mouthful.

I was puttering along happily with a little Lupus (or a lupusy thingy as we said) for a long time, until I finally got such bad tendonitis in my ankles that I could barely w [...]