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....