Snow days…

 24/01/13 Thursday

The past few days I have not taken my Fluoxetine because they are upsetting my stomach, and my head continues to have pain on the right side.  On a scale of 1 to 10 the pain is about 8 at times.  I was trying not to take painkillers on a regular basis because previously it had become too regular and can induce headaches, but now I simply cannot bear daily headaches.

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The day is very grey, heavy with the promise of more snow.   The bird table still hangs in the window, empty and incongruous whilst we discuss possible places.  Can we somehow hang it outside the window inbetween the boats, would the birds find it so far away from the bank and trees?  We had chores to do today; the tap was not frozen so we would fill with water, at the same time put the washing machine on.  Mr Hs went to empty the toilette cassette and I dumped the rubbish bags in the skip.  I also used the shovel and cleared the snow from the pontoon from our boat to the car park.  My back and wrists were hurting but I continued because I felt I needed the exercise.  I took a few photos, but there was nothing that came out particularly stunning.

22/01/13 Tuesday

It did not stop snowing on Sunday and it would have been silly to have gone out.  I feel sick; I have felt dizzy for a couple of days and had the mother of all headaches.  My stomach is hurting and I think that the replacement fluoxetine tablets are making me ill.  When I collected my last prescription from the pharmacy the factory TIVA had not got any so they gave me another brand that had no lactose in.  I have had a look online for information for Lactase – for people intolerant to lactose, and think I might try some so that I can take the medication amitriptyline which is for my Fibro pains and sleep.

Yesterday we went to Lichfield; the cathedral looked beautiful with its blackened stone with the contrast of snow clinging in the crevices of the carvings.  The roads were clearer than I thought they would be, but I think that is the microcosmic world of the marina giving me that impression.  We bought a plastic and wire mesh hanging bird table some bird food because the snow still lays thickly on the ground and on the trees and has been for some days.  Mr Hs put it together and we hung it up on the brass curtain rail and set to thinking where the heck we could put it outside!

Moving on….

Took my final note into work and let them know I am not coming back, they have replaced me already but hey, I don’t care.  It was lovely to see all my friends at work and catch up with them, I did not realise how much I was missed.    The bosses hugged me and talked about what I will be doing now, took my keys off me and left.  I hunted around for my possessions which some had been put into bin bags, some things just stuffed into the cupboard.  After I left the building I felt…free!

I have started to write my story/book, who knows whether it will be of interest to anyone, but I am enjoying spending an hour a day writing and as the snow lays heavy outside and there is nothing we need to go out for at present it gives me lots of time.

Mr Hs wants to go out as he hates just sitting about, as I am up and down cooking and making some cards I feel that I am not wasting my time.  Perhaps we need to get our new muckboots out of the car and go out….

…Indefinitely…

Yesterday I saw my Doctor.  Following my final diagnosis, I need to start the process of retiring early.  She was lovely, she was empathetic, she took time to listen to me, she wanted to know how I felt about the diagnosis.  She emphasized the good point that I do not have dementia, I have Alzheimer’s Disease-no dementia.  She gave me a final ‘sick note’ for work that says that I am off work indefinitely.   I will need to take it into my work, hand back all of my keys and collect all of my personal things from my office.  How do feel?  I feel relieved.   Work have already replaced me, rearranged my office and packed up my personal possessions, even though they have never contacted me to see how I am.  So much for the caring organisation of the YMCA!  Only my work friends have kept in contact.

Now I feel like there is so much I want to do to experience life now, rather than plod on.  I feel excited about taking our boat out for the summer continually cruising around the canals.  I think Mr Hsg is hesitant and I am not sure why, he says “if the weather is good..”, but as our friends have pointed out they went out for 3 months and they somehow managed to dodge the rain and came back with a tan.   Maybe he thinks that we will both struggle physically, him with his knee replacement which he still has limited bend, and me with my Fibromyalgia, but we can take it at our own pace.  Maybe it is just the way he is, being the man and making the decisions. Give it up Mr Hs you know us women let you have the reigns!!   I know it will be good for us both.Image

Snow..

There is supposed to be light snow about today..not seen any yet.  I love snow and am one of those people who can smell snow.   It excites me, I feel a flutter inside with the thought of it snowing.  For a while snow is pure, untouched and blanks out the hardness around us. It is silent and dense at the same time.  It whispers comfortably that spring is on its way because below its carpet the snowdrops and crocuses are beginning their journey upwards.

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However, so far today there is nothing, just the coldness that gives a hint that it might come.

I haven’t been out today yet apart from to get some fish out of the freezer on the back deck.

Today Mr Hsg and I have been discussing the fact that our 3 WiFi dongle may have been hacked into thus disrupting our internet access.  It appears that last month we used around 30 gig of downloads.  We do not download films or anything requiring a good broadband because we have fluctuating signals on the cut.

I used to work in IT.  I once learnt COBOL, and BASIC, then I was a Business Objects Administrator, I worked with Access, Faststats, I used Datastage, I used to work with immense databases and files and Sequel language and some others I can’t remember now.   I have had knowledge of computing to a deep level, but my memory is full of holes now so that I sort of know and understand some of it, but can’t quite remember most of it.  I can’t even described what I did very well now.  So, talking to Mr Hsg about the security and WPA, WPA2 etc and maybe changing ‘the something?’ to make it more secure is really frustrating.  I lose the words to describe what I am trying to say, but also lose some of the information so that I cannot put my thoughts together.  I will give up at that point because it gets more and more confusing in my head.

I think that is the reason why I do a lot of thinking when I am lying awake in bed, either in the middle of the night or early morning.  I can allow my thoughts to wander, remember, and re-remember to keep them there.

Hide away…

The past couple of days I wiImagesh I could retreat into a shell.  Withdraw right up inside and hide away from the outside world.  I dreamt that I was feeling depressed, and have wondered if I dreamt it or have I thought about it..  I do get confused with my thoughts sometimes, thoughts, feelings, ideas, reality, they seem to run into each other in a swirl.

I do a lot of my thinking when I wake up early.  I lay in bed and go over my past seeing if I can make out any clues to the beginning to my brain cells dying.

Professor L asked me if I had been dropped on my head as a baby.  It is a strange question seeing as it is not something that anyone would know without some investigation within their family.  “I was hit round the head regularly” I replied…he then explained that it is probable that it damaged my brain leading to an under-developed frontal lobe.

I remember one time sitting half way up the stairs, that’s how far I escaped from my mothers hand.  I remember the pain in my head, I think she had a shoe or a wooden brush or something that she was hitting me with. That must have one of those times that was damaging….  I used to dread coming home from school knowing that she would be angry and give me a (rather heavy handed) ‘clip’ round the ear.  I was not allowed to run away, I had to stand and be hit.  Then she would throw the accusation of  “Now look what you have done, you have hurt my hand”.   Somehow I thought that most kids were hit, although I realised that I had it worse than some.  During the summer holidays I spent from early morning till tea time outside, rain or shine.  When there were no friends about to play with I would go down the bottom of our 40′ garden and crawl into the middle of the raspberry patch with a book.  I was hidden and safe.  Other times I would stay in the bedroom and read, thus began a life long love of books.  I would escape inside my head into the world of words.  My favourite book, which I still have today is ‘Old Peters Russian Tales’ by Arthur Ransome. I read the stories over and over and over.  The Silver Saucer and the Transparent Apple, Frost, The Hut in the Forest, Baba Yaga..Sadko….  I wanted to go to Russia, I wanted to see the lands, the forests, the beautiful buildings.  I liked that Grandfather loved his ‘little pigeons’, I wanted to feel that warmth.

I was intelligent but unable to learn things at school.  I simply couldn’t concentrate or remember anything.  I grew up with a passion for science, but I ended up knowing a little of everything but as they say, Jack of all trades but Master of None.  I have struggled to retain anything in my life.

There were signs that all was not right with my brain as a child I think.  I had a craving for vinegar when I was little, when laying the table I would drink it out of the bottle.  Then my mother caught me and told me that it would dry my blood which scared me and I stopped.  My sister even now will laugh at that fact I constantly wet myself when I was young.  I never felt hungry and spent hours at the table crying, my mother shouting that I could not leave until I ate something.  She told me that when I was a baby they took me to doctors because I would never eat, all I would do was cry, but they did not know why.  I always wondered why she disliked me so much, and after I left home at 19 I spent 4 years in counselling coming to terms with the psychological damage she did me.  Now, once she developed dementia she stopped being awful to me..she simply forgot she didn’t like me!!

I have realised over time that my brain works slightly different from others, for instance, I often have music playing in my head, I wake up with a song as if I were listening to it.  Some of the songs seem to come from nowhere and wonder why a particular song is ‘playing’. There are some songs/music that I am unable to listen to…it makes me feel angry, want to scream and hold my hands tight over my ears to block it out.  Jazz does that to me.  It upsets the harmony in my brain, it feels sharp and spikey.  However there is some music which feels..right, gives my brain some peace, or lifts my mood, gives me a feeling of lightness and excitement.    I heard K’naan on the facebook page of Pip Wilson  (check out his website)..who I have met several times and who is truly devoted to working with the youth, and who believes that everyone is a Beautiful human Person.  This song Just Take a Minute’ just feels right inside my head.   It creeps through the chaos of my thoughts and calmed and lifts at the same time.

Diagnosis in writing…

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Received a copy of my diagnosis from Professor L.  I find I always need to know the exact details, everything there is to know.  I think that Prof L does not see the benefit of discussing my diagnosis with me.  Maybe he thinks it would not help me/I wouldn’t understand/I will forget anyway.  I always need to know details, no matter what it is.   Maybe that is part of my Alzheimer’s the obsessiveness of needing details.  On the other hand I have always felt that as the patient, I am the person who should be talked to first.  I should be told, I should be talked to as if I will remember, because actually I think I will.

I studied psychology and I do understand the workings of memory, I enjoyed the neuroscience part of my degree more than the ’emotional’ side at University.   The letter explains that I have deficits in the medial temporal lobe, more so on the right side. There is no dementia (yet).  Sooo… how does this make me feel…numb really.

I read this article on  an American Alzheimer’s site that gave the 7 stages that I will go through.  It was honest, and I welcomed it.  UK site’s seem to want to hide all these nasty things from us but I want to know.  I am at the pre, pre stage, I have difficulties with my memory, I am finding that my sense of humour is somewhat lacking these days, I find it difficult sometimes to understand what is going on when I am watching a program on tv.  As a touch typist who has typed for years, I am now finding that I am ‘automatically’ typing as if I was dyslexic, in other words, transposing letters within a word.  Or I am typing a word that is different to what I am typing which I am having to correct constantly.  e.g.  Or I am typing a work that it different to what \i am typeing whcih I am having to correct contsantly. (typed without corrections).  Ok so this may not be that much of a problem, but I know it and it shows what is happening to me, which I would rather not see.

So what have we done these past two days……yesterday Mr Hs slept all day..his man flu is at the coughing stage which is wearing him out.  Me, I made blueberry muffins, cooked dinner, read and did not a lot else.   Today, Mr Hs went out bought 3 bags of coal, and pressure hosed the pontoon along the side of the boat.  The green algae that grows in the wet weather makes the pontoons very slippery and lethal!  Then he filled the water tank whilst I did three loads of washing, and drying, cooked dinner, cleaned the carpets, and cleaned the bathroom.  Thus the day was filled with normal boating life chores.  Yes, it is a lovely peaceful way of life, but you have to constantly monitor your water consumption, monitor whether the toilet cassette needs emptying, take your rubbish by car to the skip, empty the Tipee Ash Can in the ditch or fill in a hole in the road around the marina.  I still love it though.

Home

Mobile wifi signal malfunction no blooming tinternet!

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I hate forms!

I have always hated filling in forms, I get ‘bored’ after the first page.  I fail to read the instructions, and then cannot remember them when I do.  I get tied up in the semantics so that I don’t understand what exactly it is asking me to do.

I have to fill in a form to make an appeal, it was bad enough filling in the first 61 page monster.  That took me 4 weeks, this one has to be done today.  Why is everything so difficult?

Gave up and phoned instead…that was just as bad, I hate explaining myself, I get tied up with what’s in my head and what’s (not) coming out of my mouth!  I have a sheet of paper in front of me to read from that I wrote earlier, so why can’t I scan down and read it.  I forget things I should say, and say things that are not remotely helpful.

I tried to blog this yesterday but the blooming tinternet wifi dongle had no signal.  So much for a daily blog

I lay in bed this morning thinking about forums and talking to ‘she who prods me in the face with a paw and meows loudly 1cm away from my face’.   I must explain, I am unable to get out of bed first because I am furthest in under the gunwale, and Mr Hs has to get out of bed so that I can get up.   I am awake early, he likes to lie in.  Piewacket black cat chivvies me along every day to get up as early as possible and fill her’s and Dozy’s bowls.

Forums – forums to support those with Alzheimers/Dementia and their carers..I know, I know..it seems crazy to think that sufferers should have the where-with-all to join in sensibly…well, let me tell you I and some others still have some live brain cells left and will continue to use them for as long as possible.  Anyway, I digress.  Support I thought, that would be helpful, and yes they are lovely lovely people, but reading the threads are TERRIFYING for a sufferer as it is full of carers sharing their stories and sadness of their loved ones whose brain cells have died.   Bloody hell, I thought, here I am wishing to get the absolute most out of being compos mentis, only to read how I am going to make my loved ones suffer when I am not.   It feels like the things that I want to talk about, cannot be spoken about and needs to be hidden from the carers….It is too raw, and too honest to be openly spoken about.

Living Will – I was unable to find any threads about those who wish to have a living will.   I want one, hell’s bells in no way do I want my family to remember me with such sadness, and trauma of having to care for me.     I have talked it over to Mr Hs and when the time is right, when I am no longer me, should I become ill, pneumonia or such like, no way do I want any treatment.  No resuscitation, no treatment end of..

And now to go get food, because the fridge is empty and Mr Hs will need feeding today.