Am I a pensioner now with the recent changes? who knows.

19/02/13 

Today I am 60.

I have washed up, cleaned the bathroom, cleaned and washed out the cats litter tray, I have undertaken the mammoth task of hoovering up all the paper cat litter bits that they walk out with them.  At 2.30pm we got wrapped up and armed with his new GPS gadget Mr Hs and I walked out of the marina and turned left to do some geocaching nearby.  Having got down onto the towpath we walked towards the first nearest cache, but it seems that the GPS system is so complicated that it was taking a while to understand.  Whilst Mr Hs was working out how accurate his GPS toy was I walked 300 metres further down the towpath and finally found my first cache, yippee!  I wrote the date and mrs hsg on the list and replaced it.  On to the next one back down the towpath, this time Mr Hs found it in a hole in a piece of concrete, dripping with water.  The walk back was torturous both Mr Hs and I had not walked this far for several months and joints and muscles were screaming that maybe we had walked too far!  The birdsong as we walked was stupendous, both noisy and beautiful announcing that spring is just around the corner.  I can’t wait to take the boat out knowing that there is no reason to hurry back.

18/02/13 – We got up early and trundled off to Burton Treatment Centre for my eye check up appointment, only to find I had somehow mixed up the days in my head and the appointment is next Monday.  I knew my appointment was on the 25th but simply did not seem to connect the day being the 18th.  Mr Hs said several times that he must remember to write this down to tell the memory clinic.  Ok wrong day, but it got us up out of bed and out.

Irritable..

IMG_6099Lately I notice that anything I say is not quite right and has be adjusted, or has to be embellishes with a greater knowledge than mine.  It irritates the hell out of me not because of Alzheimers but because it is belittling and I find it difficult to bite my tongue and not say anything rather than start a dialogue that would not be productive to either of us.  He is angry with me.

I have always found it hard to be impressed by people, I think that my childhood taught me that the wise words by Maya Angelou was the only thing that mattered, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”.

If someone tells me something new, or adds to what I have said I listen and enjoy the extra knowledge, but when someone challenges a simple statement to try and show that it was incorrect by changing the context, then I feel irritated.  Maybe the fact that I have developed these life changing illnesses frustrates or is the focus of disappointment.  When we attend the next appointment at the memory clinic, Mr Hs will be expected to record any changes…irritability, ‘oh yes’, he can say ‘she is more irritable’, and no one will ask me why.    But I can write it down.

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.