Carpe Diem

Carpe Diem  – Seize the Day

Last Autumn we started to think about finding help to get me up in the morning. This was primarily to give Jim a break and spread the load of my care. Callie the Occupational Therapist discussed the options with us and we decided to go with Direct Payments and with a care agency. The Council give us £15 an hour, but most care agencies charge more per hour so we have to top it up. It took a long time to find an agency that would take us on as most of them said they had no vacancies. This is quite worrying as the demand for care, especially for getting people up in the morning, exceeds the service that the care agencies can provide as they don’t have enough staff. At one point we thought no agency would take us on.  It was only by agreeing to start in January that we reached an agreement with a local agency.

The Manga Bathing Cushion. Once I am sitting on it the air is let out and  I sink down into the water  -.It’s  very comfy.

Care started on January 12 and we have four different carers. It was quite tiring in the first week explaining our routine and where everything we needed was kept. We have just finished the third week of care and it is working out well. The agency have a minimum time slot of an hour which means the whole process is quite relaxed, especially as I am not too good in the morning. I take a while to wake up and am quite stiff and sore. They help me to have a shower, wash my hair and get me dressed. If there is time I have a bit of a massage, which is very beneficial, especially for my poor feet. On Saturday afternoons a carer comes to help me to have a bath. This is wonderful as I love a long soak in the bubbles. It is quite a performance to have a bath. We use the Manga Cushion, but it is easier to get out of the bath with the help of two people.

My Dad and Grandpa, dressed for the beach! about 1930

I have done lots of sorting out of stuff this month. Jane came to help me to reduce three boxes of family archives and photos to one box. I can’t write clearly now so she helped me to merge several sets of photos, put them in chronological order and write on the back who was in the photo. We found some treasures like John’s grandfathers WWI  medals and leather belt. Jane also labelled all these and other archival material. I feel much better now that these are sorted out. I just have several boxes of letters to go through now!

 

 

 

On Jan 28 Fiona and I went to the Turkish Baths at Portobello which was fantastic. The weather had been so cold and we were warmed through to our bones. We tend to go on a Wednesday which is women only and it was very quiet, as more men than women appear to go to the Turkish Baths.

Portobello Turkish Baths  cooler room and cold plunge pool

There is a large tiled steam room, then four more rooms of different temperatures and a cold plunge pool. I stay in Annie the Attendant chair and put my feet up on the tiled bench in the steam room and on a stool in the other rooms.

Finally, I have done an update for January on Mandy’s  progress in my monthly progress post. Here is the link directly to it.

My Life, post

Gombe, Tanzania, 2002

I have been working for some time on a page on my life, to complement my working life. I have found the process of writing this life review very cathartic. It has been a very good life despite  tragedies and challenges.

 

 

 

If you hover on the ‘About Me’ menu at the top it will appear, but I am putting a direct link to the page here.

At the end of each month I  am  updating the ‘MND Progress’ post which is no.2 on the categories to the left side of the page. Mandy’s Progress has been very fast in January.

 

My Working Life, post

She Was Aye Workin’ was published in 2003

Just to report that I have put a new page up under About Me on the top menu under My Working Life. So if you hover on About Me, it appears as a drop down.

There are some links at the bottom of the page, including one to an interview carried out in July 2014, by the WEA for a project Breaking the Mould.  Please have a look if you want to hear what I used to sound like. I read a book earlier in the year called ‘The Voice in my Head is Perfect’, which certainly applies to me now.

To go directly to this page click here

 

Just a small point, if you are reading the blog on an email alert, some of the formatting and design gets lost. If you scroll down to the foot of the post in the email, the link will  take you to the website.

 

Wheeling around the Edinburgh Festival

I have been to more shows this Festival than I have been to for a long time. There are a number of reasons for this: shows are heavily discounted for wheelchair users and the attendant often goes free; we live very near the venues and have been able to pootle out in Polly the Power chair and lastly it may be the last festival I am able to go to and I wanted to make the most of it.

Some of the Fringe is run by promoters including Underbelly, Assembly, Gilded Balloon and Pleasance. All of which are accessible from the house. I was quite impressed that out of over 3,000 shows around one third were wheelchair accessible.

A wheelchair lift at the Cow Barn, with Bren

Many venues had wheelchair lifts or the access was backstage, past wires, props, rubbish and the cast. It is a great opportunity to go with friends who like different things and I went to six shows in addition to the Best of the Daytime Fest; an Assembly show in George Square. Access here was round the back, as there are steps up the front. This show has a Compare and around 5 performers give a 10 minute taster of their show. (This in some cases was quite enough). There were stand up acts, singing and dancing and comedy. I went twice, once with Laurie and once with Brian – high spots here were Camille O’Sullivan and the Nualas. We saw the Reduced Shakespeare Company give an interpretation of a history of comedy with Bill and Gail. The other show worth a special mention which Jim, Anne and enjoyed was Cirque: Beyond; incredible acrobatics with a surreal and amusing twist.

The International Festival venues we went to were all very accessible and with excellent seats. At the Usher Hall these are at the back of the front stalls. We sometimes see people we know, but most of the people we know will be sitting where we used to sit, in the Upper Circle. The Usher Hall is within walking distance, so I pootled in Polly the Power chair, which was great and much more comfortable than sitting in Annie the Attendant chair. We saw the Collegium Vocale Ghent twice, once performing Bach’s B minor Mass and the other some wonderful Bruckner songs. I went with Susan and Chris to the Festival Theatre to see the Paco Pena Flamenco Dance Company perform Patria a terrific working of Spanish Civil War stories and songs inspired by the life and music of  Lorca. The Queen’s Hall also has very easy access where we listened to the Pavel Haas string quartet, which was sublime.

I am so lucky that we have so much accessible culture in Edinburgh.

The Great Clothes and Shoes Chuck Out

Chucking out clothes and shoes

When Jim and I moved in to this house, we converted the room that was then used as a single bedroom by the previous owner to an en suite shower room. We had a closet built at one end for Jim’s and my clothes and shoes.

The En-Suite after, wet area and closomat toilet

We then received a grant for taking out the shower stall and replacing it with a wet room. In preparation for this work in July we had to empty the closet; an overwhelming task which Anne helped me with. I decided to take this opportunity to have a clear out.

Being a museum curator I find it very hard to throw things away and have tended to keep my clothes in the hope that I may want to wear them again or because I couldn’t bear to throw them out. So many times I have been known to say “I am glad I didn’t throw that out.” I had to have a good think about what I might need later on. It seems that trousers with elastic waists and skirts will be good to make going to the loo easier. When I get much less able then a wraparound skirt would seem to be quite good style to put on and take off. So with this in mind I did not throw away lots of dresses and wraparound skirts that I have not worn for ages, but what tended to go were many of my semi-smart clothes that I used to wear for work and evening clothes for ceilidh dancing. Out went dresses that have danced the night away as those days are no more.

The Closet

It was more critical throwing out shoes as I had as my specification shoes that I could put on by myself now with a shoe horn. If I can do it now then someone else should also be able to do it. You really don’t realise how much you wiggle your feet very slightly when putting on a pair of shoes until you can no longer do it, it will then be really quite difficult. So out went lots of shoes with slight heels and out went my lovely pull on boots. I did keep a pair of glove leather, stiletto, black suede sparkly boots. Although it is very unlikely that I will ever wear them again, I just like looking at them from time to time. Anne and Jim and took bags of clothes and shoes and boots to the Charity shop and the clothes recycling. Although Jim still thinks I have too many clothes, I then felt quite bereft and very sad about so much of my past life getting chucked out.

In August Brenda helped me move them back again. It was good to have the closet back.

 

 

 

 

What I do

What I do and can’t do

As the lady with MS that I met in the Usher Hall said, ‘Never mind the things you can’t do, look at all the things you can”, this will be about all the things I can do. However, to give a bit of context I will start with the things I have had to give up.

The main things I really miss not being able to do are cooking and gardening. I am very lucky that Jim enjoys cooking. I do however enjoy sitting in the garden whenever it is sunny.

By October 2013 I gave up Zumba – I am unsteady and my foot hurts; Aquafit,- my right shoulder and arm hurts; riding a bike as I cant hold the brakes or change gear with thumb; swimming as my foot and shoulder hurts and  Intermediate Yoga.  I had been going to yoga classes all my adult life and I had to stop going because I was getting so stiff and my legs were cramping when I stretched or when I knelt down. I was very sad about this; however I started Remedial Yoga classes on Tuesday afternoon in the New Year.

I enjoy playing Bridge and in the autumn term Jim and I went to an Improver’s class at Melville Bridge club. I think I improved a bit.

Florence

 

It had always been my intention once I retired to do an art course so in September I started a Landscape Art course at Edinburgh Art College. I just managed to hold a paint brush until the end of  the term.

 

I love singing and carried on going to Protest in Harmony, a radical singing group which meets once a month to sing songs of peace and freedom. In July 2013 we went to Aberystwyth to the street choirs Festival, the sun shone and we had a lot of fun. I also sang in Wildfire, a women’s community choir and in the Open Community Choir in Bruntsfield. I had to give up singing in these choirs in July 2014, because my voice got so tired and hoarse.

Saying goodbye to Tutor Carol Stobie

I retired in August 2012 and after I had been retired for a year I thought that I would like to get involved in a historical project. I started working with the DRB Scottish Women’s History Group on their project to promote four Edinburgh Victorian Quaker women who campaigned against slavery in the southern United States and campaigned for Votes for Women. We produced an exhibition ‘Women on the Platform’, which opened on November 22 2013 at the Museum of Edinburgh, where I used to work. I was very happy to have worked with all the women in the group. I managed initially to get to the meetings in Tollcross by bus and using a walking stick and then Jim then started to drop me off. Once I had the Blue Badge l could drive myself and park outside until late March.

In January the Blue Badge arrived and what a new lease of life this was. I was able to drive and park outside the Doctors Surgery; the chemist, Pilates classes, the Open Community Choir on Thursday evening, the DRB Women’s History Group at Tollcross and Yoga. This little bubble of independence lasted from the end of January until mid April. I had to give up driving in April as I found I was losing control of my right foot and the revs were getting high. It was time to stop.

What I can still do

I have been doing gentle Pilates since November 2013 on Wednesday mornings at the Eric Liddle Centre. This class is in a darkened room so it is not obvious when I cant do an exercise. I used to go with the ladies for coffee up stairs at Lucas, but can no longer walk across the road and climb the stairs. In August Jim started to push me into the centre in Annie the attendant chair. I gave up Pilates in September 2014 as I was finding it more difficult to do the exercises and to get up off the floor.

Om

On Tuesday afternoon I go to Catero’s Remedial Yoga Class which is very restorative. In August 2014 Jim started to push me from the car in Annie the Attendant chair into the Yoga centre and pick me up at the  end of the class. In November I had a fall while trying to get off the floor.  Catero and Elaine then put a pile, around 25 thick mats on the floor for me to lie on. It was easier to get down onto them  and I wait at the end of the class for Jim to pick me up. So I do half the poses sitting in Annie; stretches and twists and half on the mats; legs up the wall, chest opening poses, leg stretches, twists  and relaxation.

The cooler room and cold plunge pool

Warrender Park Swimming Baths is just five minutes away in Polly the Power chair and is really geared up for disabled access. The Turkish Baths at Portobello are very assessable and I am keen to go as I love heat as it dissolves my aches and pains. I can stay in Annie in the steam room and put me feet up wherever possible.

We still play social bridge which I do enjoy; I use a card holder and other people kindly shuffle and deal for me. From January 2015 Jim puts out the dummy for me and I am finding it harder to sort out my cards.

With my aunt Margaret at Portobello

I enjoy spending time keeping in touch with family and friends, and appreciate the concern and support they show through caring messages, visits and trips out. I have started this blog to keep them better informed. We are constantly discovering wheelchair friendly venues and foot paths as we continue to go out together and with family and friends. We can go out with Polly the Power chair or Sally the Scooter from the house, over the Meadows into town. There are the Botanical Gardens, Portobello Prom, the Silverknowes path to Crammond, Arthur’s Seat and Flotterstone.

We met at NCT ant-natal classes in 1991, Laurie was the last one to be born.

I have been going out for dinner about four times a year with four other ladies from our NCT (National Childbirth Trust) group of 1991. That is 23 years of sharing stories about our children and ourselves, a long time. In December 2014 I found it was  very difficult to talk  and make myself understood above the noise  in the restaurant. I also meet up with work colleagues from time to time, though we don’t talk about work that much.

Stuff – I feel it’s a race against time to do everything I want to do while I still have the use of my hands. My right fingers are getting very stiff and sore. I have triaged all I have to do and am doing the fiddly things first. I have set up this website/blog and edited my past years diary into posts, which can be found on the website under different categories. I plan to send out regular blogs.

My paternal Grandmother

I love doing family history and am updating the Family Tree Maker and adding photos and stories before publishing it as a series of reports which I can send to members of the family. I had hoped to edit all the family home movies so I could give Charlie and Laurie a DVD of their lives, but this is proving to be too difficult. At least I have got them digitised and can write up the contents of each one. I am also writing my memoirs and a time-line of different points in my life and family high spots. I can do this using Dragon Naturally Speaking which converts speech into type, with a combination of voice and keyboard. However I may not be able to use this if my speech carries on deteriorating and I sound drunk. Help!!! I stopped using Dragon in September 2014.

Sorting out stuff

When my mum became very ill I moved her up to Edinburgh and I had to clear her house out. She never threw anything out and I bought lots of boxes up to Edinburgh which I intended to sort out once I retired. There were boxes of letters, photos, family archives and over 60 photo albums. There are so many boxes to sort through.

With my Dad in Devon,1960

In January 2014 I started to sort through her photo albums as many of these were still in boxes. With the later ones she put all the prints from a roll of film in an album and there were many duplicates and less good photos. I took out the photos I wanted to keep and put them in a shoe box. This really reduced the number of photo albums we need to find room for. Next there are the boxes of letters to go through – these should be interesting as there are letters from my Dad and my Grandma and she kept all the letters I sent her. Finally there is a large box of Granny’s stuff to sort through. I feel quite over-whelmed thinking about it, but it is good having things to do. I managed with Jane’s help to sort out Granny’s box in January 2015.

A visit to the Kelpies

So my quality of life is really very good and I have loads to keep me busy. To relax I aim to practise  some Yoga and to meditate every day. I have 7.4 days of music on iTunes to listen to, hours of DVDs to watch, a subscription to Audible (recorded books) and Laurie bought me a subscription to Netflix.

What’s more I CAN WALK & TALK, EAT & DRINK, WRITE & TYPE, DRESS & GO TO THE LOO MYSELF and SING & BREATHE.

I wrote most of this post in September 2014 and have updated  it in January 2015. My little ditty now reads

I CAN EAT & DRINK, TYPE, & BREATHE AND GO TO THE LOO MYSELF. I CAN WRITE & TALK WITH DIFFICULTY AND  I CANNOT WALK & SING OR DRESS WITHOUT HELP