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.