Birthdays and colds…

I have a nasty cold and have been laid up for a week.  It was my birthday yesterday – 61, where has the time gone?  I sat in my chair all day feeling absolute pants.  I had phone calls from those who care for me but none from my family.  My niece J did not send a card, and I think that maybe she did not receive my Christmas card and present to her, but because they never have any contact with me I would never know. 

I have been thinking about the cards I make, how difficult is it to sell any when the world and his wife have decided to make cards also.  I still have this urge to share them with others so will think about how I do this.

I was listening to a Radio 4 program which was discussing the dangers in the Winter Olympics being held in Sochi at present.  Is it too dangerous?  Young people are being injured…What a load of tosh!  This year snowboarding, half pipe and similar events have been included and the enthusiasm and skill at which the young have embraced the sport is stunning and infectious.  However, the health and safety ‘police’ are asking whether we should allow our young people to take risks of injuries!  Good God can they hear themselves speak.   Ask every young person if they are willing to risk their life to live it to the fullest and I have an idea not one would say no.

As Eleanor Roosevelt said:

The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.

7th February 2014 – holiday preparations

My daughter and I are going to Budapest for a few days for our birthdays and to have time together.  I have completed ‘colour coded spreadsheet pocket checklists’ for me and Claire.  Ok, I admit to being a spreadsheet geek but if you have to take general information/emergency information then a spreadsheet fits that bill.

I have updated and charged up my iPod and Kobo with music and reading material.  I have started to pack my case and am excited to finish it.  Only 3 days to go and I shall be in Budapest with her.   

Time has flown by, I need to catch up!

Christmas 2013

What a conundrum this year, my daughter has asked us to spend Christmas with her in London.  Mr Hsg has always made a point saying he never wants to go to London, so what to do?  The solution was that Mr Hsg would take me to London on Tuesday – Christmas Eve and return home, and would pick me up on Friday.  That way he would not have the stress of being somewhere unfamiliar and could remain with the cats.

How fabulous are these slipper socks!

 

We got up, made tea and coffee, and opened our presents.  C had knitted me a pair of slipper booties, they are brilliant!  She also made chutney this year which has delighted me immensely.   Such thought and effort that she put into my present.  She made chocolate truffles for her boyfriend’s parents that looked divine in the box she had carefully chosen.

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That dinner was far too big!!

Her boyfriend went to his parents to have Christmas dinner, whilst C and I cooked dinner together enjoying catching up with chats that I miss so much.

We had been invited to join C’s boyfriend’s parents for drinks, as this is a serious relationship they naturally wanted to meet me.  I admit I was very apprehensive as there would be several other people there and I struggle sometimes to chat normally with people I don’t know.  The stress makes my loss of words worse unable to finish a sentence.  “Don’t worry” C says to me, “everybody loses words when they talk, I think you make too much of it”.  She has always found it hard to acknowledge any illnesses that I have had, and ignoring them to make them go away.  I have to talk to her about it sometimes though so that she understands my behaviour.

We walked from her house to Greenwich Village to J’s parents house, I felt sick with apprehension and too much food!  I realised that at home my plate is small but our Xmas dinner were plated on normal size dinner plates – delicious but not good for my digestion.  Of course I declined the suggestion that we get a cab, and welcomed the 30 minute walk.  The evening passed very pleasantly with lovely friendly people and a large glass of water.

Boxing Night was a real treat with a trip to the Haymarket Theatre to see ‘One man, two Guvnors’ with J’s parents.  It was excellent and very funny, a great way to spend time.

It was so lovely to be with my daughter, but I looked forward to going home with the peace of the boat and our quiet lifestyle.

When I think of being with people I don’t know I worry that I say the wrong things, inappropriate and isolate myself.

Christmas organised…

Mr Hsg is going to drive me to London, drop me off at my daughters house and return back to the boat to spend Christmas with the cats!  He struggles with Christmas, and says he feels ‘awkward’ celebrating in the company of my daughter (or friends).  I understand how he feels as it is the same when I am with unfamiliar people.  I miss being with my daughter, and Christmas for us is about cooking the dinner together, sitting eating and enjoying the day.  We are close and I know that it is hard for others to break into that closeness, but it is important for the two of us to have every moment we enjoy together that we can.  Mr Hsg and I have been together for nearly 4 years, my daughter and I, nearly 28 years…….

I have packed a bag, made a list of what I am taking and feeling both excited and guilty.  Excited about spending Christmas with Claire who loves Christmas, and guilty for not worrying about not being with Mr Hsg who hates celebrating anything, especially Christmas!  He obviously cares about me to understand that it is important for me to have these times with Claire.

My list:  Presents, food; Turkey, Veg, Gluten free things..Camera, Tablet (charged up), Christmas cheer!!

Happy holidays!

Christmas Wishes!

To you all.

How time flies!

Early December at Kings Bromley Marina

Oh my goodness it has been ages since I have last posted here.  I will need to bring everything up to date as I remember it.

Well, we returned back to the marina at the beginning of September both feeling exhausted but satisfied with the trip.  We both remarked how our dis-abilities made the activity of locking and boating harder this year than before.

Falling back into the routine of living in the marina was disturbingly seamless.   With the boat always throwing up some maintenance conundrum, the first was the calorifier  (hot water tank) splitting and leaking into the boat.  The cupboard it was sitting in had to be taken apart to remove the tank, followed by a trip to various chandlers to buy a new tank plus an assortment of brass and plastic fittings to create a twisted maze of new pipework.  New stop taps had to be put in, expansion tank, and the tank itself.  The whole process took a week to complete with Mr Hsg trying to fold himself into the smallest spaces to complete the job.   Thank goodness he is more than capable of DIY plumbing, carpentry, and electrical works, with some engineering.  Canal boats are expensive creatures demanding money being thrown at them with distressing regularity.  Following that he moved the water pump to sit underneath the kitchen units, to keep warmer in winter months so that it cuts down the delay of water flowing from the tap.

I have focused my photography and creating some cards.   I made some cards showing various aspects of the marina and took them to the office to see if they were interested in buying them.  Brilliant, they wanted them and more!  So, now I have been supplying them with Christmas Cards of the marina, people love to see their boats on a card and they have quickly sold out.

I would love to find a way of selling them elsewhere but struggle with trying to sort it out.  I thought about setting up a website but my computing experience and knowledge is disappearing and I have struggled to sort it out.  I will have to look at ebay or Etsy if I can figure out the logistics of it all.

Update on my Alzheimer’s – I have finally in these past two weeks, seen my new consultant at Derby Royal Hospital and have begun Rivastigmene tablets.    I can feel myself withdrawing from anything social a little.  Its not that I want to, it’s almost like a fear of going out, and I have no idea why.   I have to choose the books that I read a little more carefully as I have struggled to work out some of the story lines in some which is a bit of a pain because I do enjoy reading.

I must try and post more regularly to keep my motivation going.

Change; it is uncertain in its nature especially if control is in the hands of others.

…23rd March 2013

I have a call from the nurse at the memory clinic, but she starts with the fact that I live out of the area and they will refer me to somewhere nearer.  This is a bit of a shock as both SP and Prof L were ok with the fact of where I am, especially as they messed up so badly by forgetting me for two years before arranging for the scans and assessments needed.  I feel both upset and angry, not only have I run out of medication, she has not yet found out whether they can supply lactose free.  She gave me a response that the pharmacy had to contact the manufacturers to find out the ingredients.  I told her that there is a good website that lists all the UK manufacturers of generic medication and that Rivastigmene hard capsule, is the only one that does not have lactose as a filler.

She was also supposed to get me the paperwork for donating my brain for research.  This may not be important to her but it is very important to me.  I have now become ‘throw away’, a name on a record file that is ‘out of area’ and therefore not budgeted for, passing the cost to a different health authority.  I fear moving hospitals, another set of doctors, and nurses and buildings, and departments.

I have been told not to continue with the Rivastigmene patches, (cholinesterase inhibitor).  I only have one patch left anyway.  Now what, will my memory decline worse than before?  All of the instructions and information states not to stop medication, they indicate that the fog may come back with vengeance.

The last patch – today I took off yesterday’s patch, put it back in the packet, and handed the box with it and the unused one to Mr Hs to burn.  The patches must be burned or handed to a pharmacy to dispose of.  I will not miss the itching of the patches which have given me a bad reaction to them.  At Hydrotherapy this week, the therapist asked me if I had been paintballing due to being covered in angry red marks the size of a two pence piece.  Hopefully these will now stop itching and will fade in time.

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Just another day…

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I woke up having slept heavily (apart from the usual 4am check the clock time) but did not feel refreshed.  I have pain in the back of my neck and still feel exhausted. My Fibromyalgia is still bothering me.

Thursday I have an appointment at the hospital for a check up on my eyes.  I am tired of all these appointments, I don’t want to go and sit and wait my turn, talk to doctors, then leave with most of my day gone.  Good news though I am being referred to the Glaucoma nurse for check-ups rather than the consultant because my eye pressures remain static with no damage still.  This means it is only once a year and one thing I do not have to worry about, yay!

Quick shop locally, then home …please, as soon as I sit down I am out and slept until 5:30pm.

I wake on Friday with the back of my neck and the side of my head painful, I lack energy and am hoping we can stay in as my batteries are empty and I need to try and recharge them.

I think about Tuesday and chatting with my Daughter but cannot remember what we talked about, I wish I did because I would like to write it down.  I remember how it felt being with her though 🙂