Clean Sheets, Easter Eggs and Hope

Crisp, clean sheets, how I adore them, alongside good linen, it makes you feel so good, you go to bed, cosseted and know after a good nights sleep, tomorrow is another day, another clean sheet, of your life where it is a blank page where you can start again. 

I also love new beginnings when you can strive purposely forward to look to a brighter future. Since this blog began there there has been several new beginning, in my head, on paper, in actions - but I have to confess that all of them have in one shape or another come to a blinding fault. Not though one to give up, this week is another fresh start, kick started by me reflecting on  the celebration of Easter just gone, and my faith as I munch on the last of the Eater eggs.

On Good Friday I sat in church, the one day of the year when the atmosphere is one of quite reflection, of what faith and death means to us as individuals. News had spread in the last few hours that a “young” retired member of the congregation had died. She had been taken very ill in December and her last few months were traumatic for her and her family. The local FB page paid tribute to her as a tireless supporter of local issues including hours in the children hospice shop. A special person who I feel fortunate to have known, she had been friendly, supportive and compassionate to me. She had lived everyday a purposeful life and some would say she deserved to enjoy many more years of retirement. Reflecting on her life and impact on me. I thought of how she came across to others, what I could emulate and what I have thought of people we have deemed “gone too soon” like my Mother and how we can live like that. 

I have like my mother a strong spiritual faith, so I believe in the afterlife. I believe there is a reason, that someone dies when they do, the miracle of survival might have occurred dozens of times, without us knowing it. There is a purpose after death; my mother said not long before she died that she was ready to meet her maker to do his ironing for him a domestic chore - she did with as I read today with a willing heart, done to the best of her ability not just for the recipient but for her Lord. Which is why I take comfort that this fried has also gone on to do something purposeful.

Sitting there listening to the sermon was centred around Hope, our Rector quoted Vaclav Havel (czech playwright and President ) “Hope is just a feeling that life and work have a meaning. Hope is not the conviction that something will turnout well, but the certainty that something makes sense regardless of how it turns out”. 

That means we maintain hope, when life feels that we are beyond hope. For me its this: 

I may not be where I want to be at the moment. 

I may not feel like a valued member of society at the moment. 

I may feel my days lack purpose and are meaningless.

I may feel that I do not belong within the current society and its values. 

I may feel as a working age, woman  I should be in full time paid work - contributing to society. 

What though is Society today?  Our rector demonstrated with an Easter Egg and its box. 

The box was like the Prime Minsters Easter message - David Cameron talked about our Christian country - we have the heritage - the buildings, the words the music, we have our cultural values and ethos that bring value of responsibility, hard work,charity, compassion and pride in working for common good. 

Boxes though are only shells to keep the contents together - its the egg in the middle that is the valuable object, which determines how we act and live, for me thats not the government, or the monarch, or todays society’s norms. 

I gain strength and strength from my Loving God, and from those quiet hero’s and heroines including Jesus, Joyce and Jenny who do not judge me for whether I am working or not, but from my thoughts, words, & actions however small they may be as long as I can say they are done with purpose are meaningful and with a loving heart. 

In response to All Fur Coat and RA blogs - "on my Last Legs to see The Last Leg, The Interim Leg and The Next Leg"

An open letter to the production team at the Last Leg 

I was really, saddened to read @lovejellyj experiences when wishing to be an audience member on the Last Leg, but not surprised, as my hubbie and I have also had two completely different experiences of attending a recording of your programme. 

We have been four times, and we tried for a fifth time .... but had no response.... on the first two occasions we had fantastic times and were treated as if we were any other audience member, while making the necessary adjustments to make this so.... What went wrong.... well these recording were at the Hammersmith Studio, with its closure we moved to the ITV studios.

The next occasion was the General Election special...... we equally had similar experiences with those with clipboards and it was frustrating to hear, that despite writing our specific needs in the box on the application form, this information was neither passed on to the SRO team on the day or the production team itself. 

In the last decade, I have gone from a women with hidden disabilities to a woman with a stick, to a woman with a mobility scooter and in the next few months a woman with a wheelchair and power drive, I therefore know the almighty struggle it is to overcome chronic pain and other related symptoms to get from A to B never mind standing in a queue. Now you may say, sitting in a wheelchair, elevates that problem, well have you ever experienced the pain and numbness associated with being cold. How I dream to bounce up and down on my toes when standing in a queue getting colder and colder...... 

So back to General election night.... in response to what happened that night, I didn't blog... this blog didn't exist, and I didn't take to social media, because of the actions of one man... I will nickname Mr Ted.... The head of Studio Client Liaison who came and spoke to us that night, and invited me to put my concerns in writing... 

May 2015 

Dear Mr Ted


I have waited a week to contact you to reflect on what happened to us while present at this recording. Sadly in relation to all our interactions with the Head Steward of Audience Members (HSAM). I would very much hope you can forward this to the relevant person, to consider training issues. 

I believe it began before we even entered the studio. The security officers outside the building had directed us away from the queue to wait in the foyer of the London Studio, as we told the entrance wasn't accessible. Reassuring us someone would come and get us. Unfortunately the message we were there had not been passed on. When HSAM identified us, he made it clear that we had inconvenienced him, and we were in the wrong. 

When we arrived at the studio itself, my husband had no problem in his wheelchair navigating the cable protectors independently. I on the other hand, because of my long scooter base and stabilisers did, and was concerned as I had bruised my ribs and had written of an expensive scooter when previously I had toppled over (he electronic control box hit the hard floor). I raised this concern, and although the studio technicians helped I did experience pain shoot up my spine when a technician lifted and dropped the back of my scooter off one of these ramps ( I have solid wheels so no shock absorbers). 

We experienced friendly and helpful assistance during the time before and then after the major break in recording. However as you are aware, not during the long break itself. 
After it was explained to the audience there was refreshments outside, my husband and I decided to get out of the way of those coming down from the seating platform, as we had been placed in front of the gangway. We joined the queue with others to get said refreshments. We were then pulled out of the queue by the HSAM and told we could not go with our able bodied colleagues, we were asked to go into a dark corner where the pigs had previously been stored  " to get out the way" of my able boded colleagues. I was told I had to wait for assistance, I was unhappy, but tried to accept the situation. However, the stress levels rose, when the young lady who had joined us in the foyer, was also called out of the queue and was asked to go into the dark corner with us. In the meantime HSAM had radioed asking colleagues to assist us to the toilet. HSAM had assumed we needed the toilet as he had not asked. I was getting increasingly concerned that the young lady with us, was experiencing a severe panic attack and distress which she had vocalised to HSAM, who appeared to completely ignore this matter. 

At no point did HSAM show, concern, understanding, empathy or a friendly manner to this situation. All I heard was for health and safety reasons you have to stay here and wait for assistance and wait for all the able bodied audience to leave before us. Both verbal and non verbal behaviour was in a very hostile and dismissive manner. 

At no point did was a first aider called to support the young lady with the panic attack. 
Finally when assistance arrived, we were allowed out the studio, through a flat route with no cable protectors. I appreciate that this was off public limits, however, having raised the issue of actual risk. I was puzzled that as I had had to have an escort we couldn't have used this more safe route. 

We would like to thank you, for spending precious time with us during the break to hear what we had to say and for then ensuring we were fairly treated for the rest of the time with you. I would especially like to thank you, for getting a chair and sitting with us and actively listening to our concerns at our level. 

As you know I didn't want to leave on a sour note, and I apologised for shouting at HSAM, when my frustrations had reached Fever pitch, however, I'm still left with the feeling he did not understand why we were upset, we were just disruptive wheelchair users, who should be glad that we are provided with assistance.

On reflection I would love the appropriate people to consider both the training for the audience assistance team and the policies for people with disabilities in the studio environment.  
 

1. People with disabilities do not want special treatment they just need a level playing field. 

2. People in wheelchairs without carers with them, are capable independent people who constantly look at risk and get from A to B in an environment that is not friendly - i.e we do not need help opening doors, we do this everyday on our own like able bodied people. 

3. We are safe to walk/wheel alongside able bodied people even amongst a crowd, again we do it every day!  

3. People with disabilities, feel like second class citizens when stuck in the props corner in a cramped dark space, while being told, to get out of the way of the able bodied, and for health and safety reasons we were not allowed out on our own. 

4. In the 21st century people with disabilities should not be labeled as generic health and safety risks, each situation should be addressed separately.  For example my husband and the other young lady were independent over the cable protectors and were an equivalent risk to a lady in stilettos, they were going to a public space and therefore appeared to be no reason to be held back. I on the other hand would have understood, if it had been acknowledged that I needed an escort through a non public space which was cable free, and needed to wait for an escort. 

5. Please don't assume people in wheelchairs necessarily want or need the toilet, we may want to do something completely different.  

6. Who is the nominated first aider? As a mental health professional, I am very aware of the symptoms displayed when a person is having a panic attack. Does each team member have basic skills taught them? What is the procedure if a person voices that they are having a panic attack, to get a first aider to support that person, i.e getting them to a safe and quiet area? When we were at the Hammersmith Studios we were introduced to the first aider who looked after us. I didn't think this was really necessary but I wished he had been there that night. I was alarmed when HSAM said he hadn't heard both her and me state she was unwell. Are staff trained in active listening? 

7. Are people aware, that in noisy environments, people speaking at different heights, often cannot be heard, therefore if engaging in conversation, it helpful to crouch down to a wheelchair level. It is also less intimidating as an eye to eye conversation can be had. 

8. I was saddened that HSAM did not feel able to give me his name, in the world of customer service, if I wanted to praise, would this be the same policy? 

As a dual trained occupational therapist (physical and mental health) I am well aware of adapting the environment to help all those to function equally, as a disabled person I am aware of the need to educate and train people in equality and discrimination. I would be very happy to come in and talk about this further. 

I received this blog, today, and it really summed up my experience with HSAM and hope that this event can be reflected upon by all, and changes made. 

Once again, thank you for you're empathy, understanding and kindness 

Regards 

GSW

---- Forwarded Message -----
From: Seth Godin <sethsblogreply@gmail.com>
To: GSW
Sent: Monday, 18 May 2015, 11:27
Subject: Seth's Blog : Why do you do it this way?
 
Why do you do it this way? 
That's the simple test of a bureaucracy that has lost its way.
If your employees can't answer how something they do helps the customer or the company, you've insulated your people from their jobs.
"It's our policy," is not an answer to why. Saying the policy again, louder, is not an answer to why.
Their inability to answer this simple question might be because you haven't taken the time to teach your people how to think about the work you do. Or it might be because you're hiring people (or rewarding people) who don't want to think about your work.
Don't you want the people who do the work to understand it?  And don't you want your customers to feel respected by the people who serve them?


This was his reply 


Dear GSW

Thank you for taking the time to write, I really do appreciate it and the very useful points you raise, including the specific references which will definitely help us consider where the right improvements are needed and implement them.

I hope we can welcome you back to the studios in the near future.

Best wishes

Mr Ted

We did apply for the series just passed, but despite requesting tickets for the weeks at the end of the series, at the beginning of the series, we were not allocated any, thats ok we thought, thats life. However when we saw the new set, with apparently no wheelchair allocation on the set itself and such big production numbers at the end, I wondered whether there was any allocation for wheelchair users at all, certainly if they were there, they were back in a corner somewhere. Reading the twitter responses today to @lovejellyj, @mikScarlet article ( http://www.huffingtonpost.co.uk/mik-scarlet/big-benefits-row-a-story-_b_4724617.html) in relation to another tv studio experience sums up much of how I and others are now feeling.

To sum up, @lovejellyj experience was not one off, and what is so frustrating, disappointing and distressing, is Channel 4 could be considered the leaders in TV about inclusion and equality, you have the most superb programme vehicle to do it, but if you cannot walk the talk and demonstrate that you understand the difficulties of disabled people in everyday life, by ensuring your studio audience with impairments doesn't feel discriminated against then your authenticity around "isitok" and the image you want to portray is put into question. 


Yours

A very Grumpy Spastic Woman

Dear Mummy - I don't feel generous

Dear Mummy

Oh how I with you were here now, so you would just sit and listen, and provide the soothing balm you were such an expert at doing. 

There we would be you sitting with a coffee in hand, if at home with the ashtray, cigarette and nail polish to hand. Just listening.

I am sitting here in silence, another typical day in my life at the moment, feeling demotivated and wishing the hours going by until my husband comes home from work.

Deep deep deep down I know that I am really angry with my current situation. I am so confused and I'm struggling to get myself out of it. 

So in January 2014, my life came to complete standstill my body had had enough and it stopped and I have felt in limbo ever since. 

What would I like to be looking forward to - if my fairy godmother waived her magic wand and said she could whisk me off to anywhere I would like, I would be in my favourite hotel - the one I honeymooned in. There I would be sitting in one of the big comfy sofas with afternoon tea in front of me and the piano playing in the background. I am slim dressed elegantly; nails  and hair groomed by professionals. I feel good about myself and if this was a real fantasy I'll be wearing the most gorgeous red high heels.

I would be successful this would be a celebration of some think I had achieved I will not be a alone and I would have OH by my side with one or two people who cared for me and on this occasion they would be treating us ( not the other way round) I would feel loved and be loved.

Instead I am sitting here trying to focus on one of  todays tasks, As Lent begins I have signed up to 40 Acts of Generosity again and as much as I want to do this and I want to look outwards and serve my loving God I feel deep down and I'm angry towards those who are blind and lack understanding to my current health both mental and physical, to my social isolation, and lack of roles and purpose. This is blocking my actions or I do them but not with a peaceful and loving heart. The thing is Mummy I know that you would understand that as I know that you felt so socially isolated and had a lack of purpose when you move from Essex to Surrey and I had all grown-up suddenly and you had left your friends, your community to somewhere new your little girl was about to fly the nest and didn't need you as much any more, you had financial security through my Daddy, equally you had loneliness spending many days like me just in the company of the cat.

So in the next 40 days (well 35 actually) I want to try to do better break this cycle that I am in and try and change things for the better. I need to squash this inner voice that is suffocating my motivation as I do know how, as my massage therapist said to me today I've just got to find the discipline. 

I feel Mummy you would be asking me now what is this 40 Acts of Generosity to focus me I know on the positive. 

Day one started with this quote from the Bible "Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind" and "Love your neighbour as yourself" Jesus said "Do this and you will live".Luke 10 27 -29

I know what both you and him are telling me now - stop looking inwards at yourself, and feeling sorry for yourself and telling yourself it's okay because you've achieved X today and actually it's not okay because you could have achieved X and Y today if you'd actually put your mind to it; stopping the self pity.  Looking outwards. 

On day one of 40 Acts, it asks you to look about the circle of relationships in our lives our friends, our family our immediate and wider communities and how we connect with them and as a servant of God how do I serve them, to look at who God has placed in my life. Additionally I add note to self not to see their failings, to look for their attributes- what they can give me and stop being wishful for something that they cannot give that I may crave. but not necessarily need. 

In the next 40 days, actions could be coffee, cake, impromptu meals and visits; handwritten notes and active listening. Again note to self perhaps if I do all these things I might get it in return but if I don't it doesn't matter.

These might be fleeting moments of contact each week I might know the face the name but I don't know their story and perhaps it's time to forget about my narrative, my story and look at other peoples instead. 

you & I stared the same faith, so ultimately I am accountable to my God. I certainly know that it has kept me going throughout my life, is certainly is a help not a hindrance, he is my mentor. Equally, you were another mentor. Today when I have felt down and low, by simply thinking about what both of you would like me to do I can pick myself up dust myself down and get on with it. 

So my cup of tea is cold, I do need to go put the kettle on, to draw line, and begin again with the inner strength, I know your and his love gives me.

And perhaps one day my dream, will become reality - minus the heels of course

Love MM ( mini moaner your nick name for me)

Taking 15 minutes at a time

This was Thursday and it's still with me when the cloud of anxiety and low mood casts it shadow. It's here as a tight ball in the pit of my stomach - nobody to know but me. It's too boring and repetitive to tell anyone else. 

I could easily spiral into self pity and let my emotions overwhelm me... Not today I put my therapist hat on and take charge of myself and put copying strategies into action. 

Priority is to live in the moment - take the next 15 minutes at a time and make them purposeful. 

1. The first is to get out of bed

2. Have a shower, soap yourself in some lovely smelling body wash - currently it's coconut - to remind me of my Caribbean holiday. Clean hair and also spend a few minutes feeling grateful that I have hot running water pouring over my head. Now there are days that I don't feel the love for these thoughts or even to do it. But I make myself because I know the first step in feeling better about yourself is self care. So lastly not forgetting to clean my teeth. A simple task like this one can be a struggle on a bad day. 

3. Get dressed - clean knickers if nothing else 

4. Hot drink, pen and paper - now you are thinking why not breakfast? Well my insides often take a while to straighten themselves out after being horizontal. For several hours so it's better let them all shake down so to speak. 

5. Now it's make a list - plan, pace and challenge myself - might even be the small things - dirty clothes in the laundry basket and make our bed - that is if the cats not on it. Black or blue pen with a bright colour to cross through when I've completed. 

6. So to action I tell myself - the first small  task and then another - I set a timer of my phone - 15 mins then a sit down and reward myself a couple of pages of a book, 15 mins then back to the list and the cycle starts again 

Keeping Going

""You lot know me, I never completely give up I huff and moan and feel sorry for myself for a bit but I'm always come back fighting in the end" crazy cat lady MSE

And yesterday that's what I did, kitten food, pedal bin liners.

Then a healthy break an hour of exercise - for an hour a week I have some would say an extravagance an hour of Pilates with a personal tutor 

After a small break... I went upstairs and started to tackle my work in tray, that had been left undisturbed for months...... And chalked up a half day. 

Not only that but after supper I went out to Amdrams and 5 minutes later I was climbing across steel joists in the search for props, a guided tour of the building, 10 minutes chatting to folks, and a walk back to the car and my hips and pelvis were on fire, red hot polka stabbing and telling me just how much they were unhappy.

I went to bed though feeling satisfied that I had kept going.... 

Moving Forward

Another quote from my book this morning, lesson for the first Sunday in Advent caught her attention "It is high time to wake out of sleep... The night is spent the day is at hand: let us therefore cast off the works of darkness, and put on the armour of light....."

So this spurred me out of bed,showered, dressed, best bib and tucker even breakfasted. 

I'm sitting on a coffee shop waiting for my old boss, he's fifteen minutes late with no word. 

I am trying to feel positive - this was an action with a purpose - to see how the state of play is - whether there would be any locum work. I keep saying to myself he would be dealing with an emergency - hang on don't feel rejected - don't feel angry that all this effort you made this morning has been a waste. 

Half an hour after our scheduled meeting he rung and said there was a problem ... Still feeling cheesed off I shared my frustrations with my BF who came back with these wise words..... " He's stuck in the Office and being a typical mail is crap at communicating....he shouldn't have made a meeting first thing on Monday morning knowing that usually Mondays when it becomes clear what things have cropped up not dealt with last week who hasn't turned up on the Monday and what impact that has on the rest of the week etc !" She ofcourse is right. I treated myself to a coffee sat on my phone the glories of being able to do admin wherever you are able to answer emails and then go off to buy kitten food

As January was a right off - this is my New Years Day

I know what I need to do. I know I have the skills and knowledge to do this. However I also know I'm currently lacking the motivation and confidence to do so. To the outside world this is laughable. "Of course she has the confidence she ouzes it from every pore in her body".  

Awake at 6 AM, I have not got worried that I'm going to sleep through my alarms and I set up three of them including my husband who is going to ring you at 8 o'clock. Is dead before he left for work bought me a cup of tea thankfully received.

I would like to say I have the motivation to jump out of bed with energy and excitement about my day ahead however I am in pain, my fatigue levels are reasonably high and so are my anxiety levels.

I am distracting myself with in a book that in the back of my mind I feel I should be practising mindfulness instead or of course getting up to do Bible study and putting all my concerns to him up there.

I feel really lonely and in many respects forgotten. I would like to put the radio on for company but I know my favourite station radio two will be full of the loss of the Terry Wogan. Sad that it is, I don't want to be reminded about loss. I also want to say to people this cry of stamping out cancer once and for all what are people going to die of if not cancer? Of course it is heartbreaking when a person is not in the older stage of their life cycle, and of course I would advocate the hope that treatment could put off death till later in life but I also wonder about the science of trying to stop the natural rhythms of life and natural selection.

So this morning a quote from the book that is make me thoughtful "how many people refuse to recognise the happiness at their own doorsteps and spend a life searching for some mythical bluebird"

This brings me to the current tug-of-war that my brain is having with my current life, in all intents purposes I have retired due to ill health, I am living a life of a retired person, however this is not making me happy. The big elephant in the room I am not financially independent. We are asset rich and cash poor. This means that I am stuck indoors for most of the week, reading crafting and sorting out projects such as my photographs, hobbies but do you fill me at times with pleasure but when they are daily occupations, pleasure is a dull and often unsatisfactory. As well is this my pleasure food is not helping both my hips my waistline and my general health. 

I was brought up to be independent and to serve others and I feel neither of which I am achieving at the moment.

So for me it's the first day of the New Year and I have opportunities that I can take to change the situation and with a clean sheet I need to kick myself up the bum and find the motivation from somewhere to start changing small aspects of my life for the better as only I can do this. 

The unhealthy impact of poor customer service

Rarely I physically go shopping, it's a great effort and I am forever having to problem solve and work round hurdles. 

However, I needed to do some business banking and buy mounting board for a charitable project I am involved in. I psyched myself up, borrowed OH car, ( easier for hoisting scooter) and off I went.

First hurdle finding a disabled space with chevrons by the side, to enable me to open my door wide - easier said than done in the large car park.

First stop Metro bank where as always I feel a dog is more esteemed than me. The front doors are not automated. So unless there is a friendly customer entering at the same time I struggle to open the heavy door with one arm while manoeuvring my scooter with the other. Once inside I see dog bowls, as a welcome along with doggy treats on the counter. Fortunately they are not in a dogs reach, mind you neither are they in mine. The scooter is very high, at most people's chest height so up I crane my neck up to pay the chequers in when the assistant looks down at her computer I just see the top of her head. The young woman speaks to me her voice floats over my head I am unable to hear. So I have to ask her to look down at me and repeat what she says, I can see she is reaching on tip toes. I wonder what a child feels as well as other disabled peers when faced with granite slabs. I go out with staff rushing to open the door for me. It is disappointing that in this moder world simple things, like automated front doors, matching the automated internal ones, a door bell to ring for assistance. And a banking desk that has one end lowered to be able to speak face to face with children and those in wheelchairs would be a given, rather than dog  bowls and treats. 

Next stop T K Max, a friend has been raving about this particular store so I thought why not, I found a fab dress - shall I take it home and try it crossed my mind, but no I decided to make the effort and headed for the changing rooms and was so into a generous sized changing room with seat and grab rails, excellent, undressed and with dress on I looked into the mirror.... Well the shop fitter deemed that disabled people would be either "little people" or that they would be completely paralysed as the mirror ended at my chest. No walking stick with me, I wasn't about to try and find another mirror. Fed this back to the assistant in charge of the fitting room, who said " when I paid for my items there would be a feedback form on the back of my receipt" - my purse was firmly staying shut, so that was that. 

Still in the mood for a Christmas dress, I popped next door to Next, I felt I was in a forest of clothes and couldn't see the wood from the trees so to speak. A quick exit, as I then did from Laura Ashley, same problem and nobody around to assist. 

Another Week

7:30 AM and it is Monday morning, it's dark and wet outside and frankly all I want to do is hibernate. 

So today I am longing for a Kate Stubbs hug..... She was the only person who gave me unconditional love as a child. 

Being with her blue my troubles and worries away for just a little while. 

Started the day with my tummy in spasm and then the consequences of that....

I've managed a few tidy up chores and come back to bed with my second cup of tea well actually my third - didn't put a teavag in the pot for my second. 

My good hip hurts - consequence of Friday's treatment I hope. 

I started writing this many weeks ago and today is Thursday and I could honestly say, it is demand vous apart from we swap dark and wet for dull and cold. 

There is deathly silence, I have yet to switch the radio on, and I don't know why I have not, the few words I have said today, was firstly early to my OH reassuring me that the elderly cat was ok, and now a one way conversation with the cats ... Who other than second breakfast really want their zzz's 

Part of me craves this silence, the other half despairs of the feelings of social isolation it raises. Going out takes both energy and money neither of which are in plentiful supply at the moment. I have written this week about keeping going.... And I have 

Tuesday, I spent the day in the study, not as planned .... The diary said Mr Borrow My Doggy in the afternoon and then I had found the mindfulness course I need to do, and that started that night... Good I felt, I would be getting vit D by being out with the dog and then upwards and onwards with my drive to reserect my working life was on track... Then with a phonecall and text, I was derailed...... Course was post phoned as not enough numbers and I wasn't needed to doggy sit... Ok not a problem... I could concentrate on admin and other income streams.

The house was full of life the cleaner was here, and OH was working from home... 

Then OH proposed a date, cinema and supper, but then was postponed as we had forgotten Mr O the grocery delivery, planned because I was out.... 

So I was allowed to sofa surf and catch up on TV let's say Casulty and Vera were not cheerful watching! We did find "mobile phone sales idol" which was rather compelling watching and was really interesting especially about how parents expectations can have a real impact on your mental wellbeing.

Radio on Paul O'Grady and a bowl of hot "shr3ddies" miss kitten is staying close hoping to lick the bowl.

Wednesday was a slow start, and not just me, Mr Big Boy ( cat ) curled up between my legs and I really didn't want to crawl from my pit. However, church and Dad called, showered I realised that window cleaner had arrived, shot out to church and found I was the only one in the congregation, I am never sure whether this is a privilege or not. However, the curate was able to share the sermon she had prepared. Then I shot off down the motorway to Dad, went to the jewellers and had lunch, microwave was passed across and then finally I got my eyebrows plucked!!! 

Home to tea and Mr Big Boy with a poorly bum again.... 

Managed another half day work admin.

My Dad's parting words to me was get someone to lift it in for you its heavy, well it's amazing what two disabled people, two trolleys and stubbornness can achieve. Now the joys of a tip run.....

Microwave in place, after a mini kitchen reorganisation and it was pressed into use, for supper, left overs for JB soup for me. 

TV tonight was Midsummer Murder and knitting.

Both cats wanted to be in bed with us last night, but kitten was jealous and didn't want Mr Big Boy, I on the other hand started to panic... I have this great fear, that a cat will die in bed with us. We slept alone last night...

The Dull Ache of Friendship Rejection

There are days when I have to remember this poem

People come into your life for a reason, a season or lifetime.

When you figure out which one it is you will know what to do for each person.

When someone is in your life for a REASON.
It is usually to meet in need you have expressed.
They have come to assist you through a difficulty;
To provide you with guidance and support;
To aid you physically, emotionally or spiritually.
They may seem like a godsend, and they are.

They are there for the reason you need them to be.

Then, without any wrongdoing on your part or an inconvenient time,
This person will say or do something to bring the relationship to an end.

Sometimes they die. Sometimes they walk away.

Sometimes they act up and force you to take a stand.

What we must realise is that our need has been met, our desire fulfilled; their work is done.

The prayer you sent up has been answered and now it is time to move on. 

Some people come into your life for SEASON,
Because your turn has come to share, grow or learn. 
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They used to give you an unbelievable amount of joy.

Believe it. It is real. But only for a season. 

LIFETIME relationship teach you lifetime lessons;

Things you must build upon in order to have a solid emotional foundation. 

Your job is to accept the lesson, love the person, and put what you have learned to use in all other relationships and areas of your life. 

It is said love is blind but friendship is clairvoyant.

Hormones are racing and it makes truck in my life even harder.

Last night I had the opportunity to see an old friend, somebody who once was important part of my life. However as the poem goes seasons change chapters close and we have not seen each other for five years and the last time, conversations were okay but I didn't get that feeling of old friends picking up where you left off we were merely acquaintances.

I have never been in the in the circle of their friends, although they were for me in mine. So when my sell by date expired (marriage for them) I was left out in the cold. Ironically they had met a couple of my friends and they had infiltrated there in the circle.

I have been debating whether to go to the event where our paths would cross I knew I would feel both feel very awkward and be reminded of that feeling of rejection.

So I decide to take positive steps firstly I decided not to attend the event. I decided if they contacted me to say they were up the road was I going. I would make a decision at that point; there has been no contact. I seeked out this poem to remind me that some people are here for just the season and therefore to make a point today to remember the times when I really appreciated them in my life and give thanks for them at that particular time. Hoping that the process of being thankful will heal the dull ache of loss. 

What's making me so grumpy and wishing to quarrel with everyone who crosses my path

What is making me short of patience, irritable and angry with the world?

I am still off sick.

I am often in pain and have high fatigue levels 

I am not earning any income 

I/we are in debt 

We have no spare cash for a social life 

I enjoy making doing and mending but at times it's hard not to be able to easily renew worn out things. 

I do not feel of value 

I feel like all my energy is focused on completing chores 

I feel I am not pulling my weight 

I would be happy - keeping house, reading, crafting, volunteering, gardening, projects if I had a small private income to contribute to maintaining a reasonable quality of life 

I am inwardly angry with my parents who have never really recognised the consequences of a disabled child and treating me as "normal" now has major consequences.

I did not want a Pilates spine corrector as my birthday present but knew this was the only way of getting it. Expensive but it will help my back. 

I am frustrated that I am not using my academic achievements - did I achieve them for nothing? 

Waving Goodbye to Complaint Letters

Two virtual bombs landed in my home the day before yesterday... It made me see red, and made me ill and impacted sourly on the eve of my birthday. 

Reflecting today I am sad as other people's assumptions, opinions and actions need not have made this impact on me. 

My initial response was want to "shout" back and respond to their responses. Tell them how unhappy I am with their responses. 

I am of course completely frustrated because they cannot comprehend what it is like to be me, and the impact that failures in their products and services have actually severly impacted my life. Let's face it, nobody can know what it feels like to be you. There are some who can emphasise greatly and you feel that they just get it, sadly though they are in the minority. 

This is the first day of my 47th year, and I want to #doitbetter. So I am going to file the responses. I am not even going to re read it. 

Then I am going to vote with my feet.... 

Dear TGA - I am not going to promote you to anyone, and when I need to look for a replacement I will be looking elsewhere. 

Dear BA - If I can choose any other airline but yours I will 

Next time I want to write constructive feedback... I am going to walk away .... Remind me 

Grumpy woman update - Edinburgh Tattoo

I did indeed send the email and after several days I got a reply.

I read it a couple of times and then passed it to my OH to also read.

His response was well they just didn't get it did they? He then went on to say well at least you ate your feelings!

Well that I did and sadly I don't think they'll make any changes but at least I said something and now I lay it down to rest.

When you know every step of the day will be a struggle

So I finally raise my sleepy head at 8.45 this morning and groan I wanted to be in the small shopping centre near to Mr BMD by 9am to have a leisurely coffee and get milk .... That's 15 mins away. 

So with the briefest of a lick and a polish I'm out the door with Mr Cat not happy as I've only given him the briefest of attentions - will have to make up for it later - but then again he will do rolly pollys on the floor when bending down is not easy. He's missed his duvet cuddle😗

So here I am with a small latte in front of me - pleased I hadn't chosen something to go with it - as instead of my free treat that I expected I had to find pennies 😣  - wrong card 

The small walk through the centre was 165 steps and I struggled with pain every step of the way. Passing both the charity and health shops which I really want to go into but I need to keep my spoons for the supermarket and milk. Mission completed but later I remember I forgot lemons 😕.

So I have a brief respite in the open air when I scoot out with Mr BMD even if at times he pulls my arms out of their sockets. 

Massage was painful only made easier by the interesting conversation. 

The afternoon and evening are fuzzy due to the blur of fatigue and feelings of despair about the life I now lead.... 

Fatigue Fairy has waved her wand

I feel that I am wading again through nothing less. Since getting back from Edinburgh, I have struggled with every waking hour, and feel that I have achieved little.

Despite OH being here until today reassuring me that I was doing ok, my head and my heart feel completely different.....

On Wednesday I sat on the sofa watching TV, I though wasn't idle in the true sense of the word, as I ad an embroidery project to do as a Thank you present and I completed half of it. I also wanted to bake and I made some cookies using left over ingredients ( peanut butter and ground almonds) and I read. The guilt though is this damp cloud around me. 

We concluded simply we are asset rich and cash poor, so this damp cloud comprises of me acknowledging its a working day, and I am doing activities that would be considered as leisure, not as there were for me on Wednesday some way of me being productive...

Thursday a new day, following a day of rest I will feel zippy and ready to achieve much more - fat chance screams my inner voice. 

I'm still wrapped in a towel when Mr Borrow My Doggy arrives, and for the next hour and half it's mayhem, firstly I tackle the rest of the washing up as promised from the night before, OH had imparted that dear Mr BMD had had the runs since eating cat food the day before, so you can imagine my thoughts when having shut him out of the main carpeted area, I found him in my carpeted study doing his business. Superman OH came to the rescue apparently the smell was the worse bit! I had clothes everywhere in the bedroom dirty piles and clean from unpacking all had to disappear before Mr Sports massage arrived. 

Thankfully neat and tidy bedroom was ready when the doorbell rung, I want to say the next hour was blissful, but my muscles were so tight, it was painful. 

Afterwards felt so washed out Mr BMD and I curled up on the bed, and I started the book club book ... Ian McEwan The Children's Act an interesting and turns out to be a quick read, I had finished it in under 24 hours.

The rest of the day was back on the sofa again....... 

To Email or not to Email - that is the debate

Sometimes when things irritate me, my first response is wanting to give feedback.... As a person with a disability this can be constant and so then are you labelled a criticiser or a campaigner? 

Despite the ups and downs of Monday morning.... We got to the Tattoo on Monday night and our friends had got us very good seats in the block in the middle - fabulous views of the arena... Settled we began to listen to the jolly commentator until he said something to make both my OH and I skin crawl and for once my mild mannered OH commented that he felt patronised. 

The warmed voiced commentator needing to fill the time, was welcoming people and he began my focusing his attention, on those 'special people' in front of the stands - those of us in wheelchairs. Sadly you could tell that the commentator was of an age where, those with disabilities were to be pitied and when attending an event like this, as if it was a major achievement and something special, a "a treat" 

So of course I spent the next few hours writing an email in my head to the organisers......

Dear Sir, 

During our stay in Edinburgh over last weekend to visit friends, they had kindly arranged tickets to the tattoo. We throughly enjoyed such a magnificent event, everyone working so hard to make it such a success. 

I would though like to draw attention to a few minutes that made my husband and I feel very uncomfortable and patronised. We were enjoying the welcome your warm and friendly commentator was giving until, he decided to welcome those "special people in the front of the stands", realisation dawned on us that he was not singling us out because we had crossed the border, or it was our birthdays or the fact I am a health professional (occupational therapist) and my husband a Business analyst, no the way it was presented was asking the abled bodied audience to especially welcome the wheelchair audience as if attending an event such as this was a major achievement and something special "a treat" in as much one would experience a pat on the head. 

In the 21st century and in an age where returning injured veterans and others want to feel that thay are considered the equals to their peers it is ironical that the barrier to feeling on equal footing was not the built environment of the tatto seating which was was designed to blend the audience in every shape and size, but in the perception of the commentator however well intentioned it may have been. May we ask that you share with him how we felt, and that in future, singling out the grand old gentleman of 99 is right and proper, but not the 40 something professional individuals who just happen to be using wheelchairs. 

Once again we thank you for a marvellous evening and we home to time our next visit to come again. 

Kind regards 

 

Monday Morning Scooter Blues

So the saga continues ..... 

I am trying to hold it together... I'm sitting in the lovely bar of our hotel - the Apex Waterloo..... Stranded 

Turn back the clock just over 24 hours - I had struggled out of bed, rejiggered plans, had had a yummy but expensive breakfast and had found a hip and trendy  wool shop where I could disappear to for a couple of hours on my own... 

Off I scooted up the main road ..... Appreciating Regents Park and the regency buildings on my travels ..... Despite non existent drop curbs and mixed quality of roads and pavements I arrived at a little place of heaven "Ginger Twist Studio" and had a really happy half hour nattering about craft and just a spot of retail therapy. 

Back on my wheels again.... Heading back within 5 minutes my scooter had stalled and refused to go.... Where had it chosen ... In the middle of the London road with two lanes of on coming traffic about to come behind me as the lights changed....... 

So my body already not at its best switched into fight or flight mode and adrenalin kicked in, and my right hemiplegia body went into spasm.... Fortunately girl power appeared with a friendly young woman who helped me disengage the motor and freewheel then lift it back onto the pavement. 

Waving her off, I tried to remain calm, and went into re - engage mode lifting out the battery and firmly putting it back in place - joy - the little green light no longer blinked and shone merrily at me.... On I got moved off round the corner and with a shudder it stalled again. This time I could feel the adrenalin still running through my veins leap - I got on my hands knees to get nearer to the battery compartment ( no easy feat) disengage scooter , battery in out firmly push into place, try again, green light flashing no joy, repeat, repeat, no joy. I give in..... 

Telephone call to taxi company to rescue me, I am alone, unable to go anywhere in the middle of a pavement, in not the nicest of places and feeling unwell with a spasmed body, high anxiety levels and feeling very vulnerable. Desperately trying to keep hold of my dignity as in these circumstances part of my condition means I cannot easily regulate my emotions. 

Then the hour of hell .... The first taxi promised in 10 minutes was cancelled after two phone and 40 minutes later - not to mention the young women who sat in the car in front of me running their engine for 20 minutes making phone calls until in desperation I knocked on their window and said their petrol fumes were turning me green ... Finally after an hour I was rescued - 5 minutes later I was back in the hotel £8 poorer and ordering a stiff drink as I hadn't dared have water as when I have to go I have to go....

I retired to bed, wired on adrenalin, really emotional, body in spasm and really angry with the world and my poor husband. 

The day was effectively written off .... 

I swapped my afternoon out with friends and my romantic dinner for a half hour massage ( another unplanned £45 ) to try and release my spasm. A glass of vino and fish and chips in the bar.

I didn't want to think about my scooter... My OH patiently cleaned the battery compartment and locked the battery back succeeding to get the green light.... 

It was with mixed feelings and trepidation I sat back on the scooter this morning but after a few blinks the green light glowed ... Off I set lift, stair lift out the front door and then stalled fortunately 5 metres from the front door, the process of disengaging etc started again - no joy. 

With sinking heart my day in tatters  I free wheeled it back into the front door at 9am this morning... 

It's now 11.30am I've just had a cuppa and a sandwich... Having planned to have brekkie out and by the time we had sorted an alternative plan of action.We decided to go and get some breakfast we found they had stopped serving but would offer to a Continental for the princely sum of £16 ahead! so 50 minutes later, we were able to order a sandwich at the bar and my sugar levels have levelled out... 

The TGA engineer has just telephoned to say he will be with us in an hour but does not carry parts! 

An Edinburgh mobility hire shop is about to deliver a scooter which will need charging but will have me mobile again by 2pm and will get me at least to the tattoo tonight - - princely sum of £68 for 24hrs but does include deliver and collection ..... 

We now are considering posting the scooter home and having to get a taxi home from Kings Cross as tomorrow will have to rely on my legs... 

I wanted an adventure on the train but I wasn't bargaining on this one..... 

Why blog.......

Dear diary and anticipated readers 

Mini moaner was my childhood nickname and although it was affectionate it had a barbed meaning. I was brought up not to moan and make the best of things, to be thankful for my lot and just get on with it. 

Well that's all very well, but I'm not the healthiest of people having been born with cerebral palsy and I confess now although a blonde I was a fierce redhead in a previous life and my temper is I am ashamed to say quite explosive at times.... 

A great example is yesterday .....

We are away for a long weekend in a fab new city. Friends also live here....although for access reasons are staying in a hotel rather than with them. 

Yesterday morning I was due to meet my female counterpart at church ... Then spend the afternoon with them before a romantic dinner for two in a lovely looking restaurant. 

What happened ..... I spent it mostly in my hotel room, raving and crying in alternative spurts. What were the triggers ..... A virus still in my body, chronic fatigue, my mobility scooter broke down.... And my OH and I not singing from the same hymn sheet. 

It was not a good day and I hate it... 

So out of something crap comes something positive.... I'm going to write to you and see if it helps me in the outside world....