January’s roller-coaster 🎢 ride

January’s roller-coaster 🎢 ride

2018 is approximately one twenty fourth gone (a bizarre opening I know), and I already feel like the year is going to be a tough one. After a number of good months of weight loss I found with the indulgences at Christmas I encountered my first week of gain. No big deal really but getting the discipline back has been harder than I imagined and I’ve had a week of staying the same. A real kick up the backside, but with another 3 stone minimum to go, a kick I needed. There are foods I love and for many years I could eat what I wanted and with the amount I was able to exercise it didn’t matter. Things are massively different now and the inability to exercise coupled with a learnt love of food frustrates the hell out of me. If I’m honest, it’s the not being able to exercise that I find hardest. A run was valuable me time in decades gone by. 

Following on from Christmas we had a relaxing mini-break booked at centre parcs down the road from our home town. It was lovely to escape to the forest with my family and have some downtime if there is such a thing. It was our first stay as a family and I hope it won’t be our last. We were treated to a veritable feast of nature at our window each morning enjoying the breakfast we put down for them. We had lots of fun spotting birds, deer, squirrels and any number of other fauna.

We made some lovely memories, mad science, adventure of the senses and had a soak in the pool, that had good disabled access, large changing facilities with beds although these were available to all and no surprises they were always the ones wanted by everyone. I tell you when it comes to a larger changing room, toilet or parking space everyone wants to use it if only all the same people wanted to have the disability that makes theses a necessity not a luxury. I digress (a theme of my blogs). There was ramped access into the pool and wet side wheelchairs, the staff were well informed and even understood the difference between ambulant and non ambulant wheelchair users. The one downside was there was no way of booking an accessible pool side cabana as there was only 1 and being the largest this was always booked and not listed as accessible. This really was the only negative regards the swimming and activities we booked, although a bit more information on the website wouldn’t go amiss. When booking in we were given a permit to place next to my blue badge in the window of my car (available if you’re the driver) so I could leave my car outside the cabin and hoist my scooter/wheelchair in and out depending which one I was using. The adventure of the senses had an alternative wheelchair route so I could do 95% of the activities and the pathways throughout the site were a good standard meaning I could switch between using my mobility scooter to go on nature walks, watch crazy golf and the like and using my wheelchair to have something to sit on comfortably when going to eat. 

The weekend was a huge success and we left with big smiles on our faces and great memories to look back on. The downside of a peak like this is the payback I get for over exerting myself, pushing myself too far, maximum medicating and sealing spoons. We returned home 10 days ago now and I’m still suffering the consequences, increased pain, sleep deprivation, increased mood swings, lower daily function. In essence I’ve been a hermit other than the school run. It is times like this when having a friend as my PA has been amazing. He’s shopped for me, come in each day and done all the things he usually does and just left me to doze in and out of pain unconsciousness, it’s the best phrase I can come up with to describe my body shutting down when the pain is too much. I’m not really unconscious but I’m not really coherent either, it’s just what happens when my body says you know what I can’t deal with this pain. Sadly it’s for about 30 minute intervals as I either spasm or twitch and have to move slightly to get comfortable again. The payback for having fun is a b!tch but the one thing last year taught me with the loss of far too many friends is that life is too short to sit around doing nothing. The pain is never going away, the frustration, the good days, the bad days they are part of life and I have to embrace them. 

Each year I hope the new year will bring with it easier times, some minor miracle of a day out without two days either side in preparation and recovery, or people not having to plan things around me and quickly that hope fades away after a few weeks on the roller-coaster,although I try not to be too negative as I know there’s always others worse off than me and good friends going through harder times, whether it be physically or mentally or both, but for me personally I do wish there were some days where the roller-coaster was more of a relaxed cruise. 

For The Billion | Martyn Sibley

This is an inspiring read, not only about overcoming adversity and learning to accept and persevere in life, but also explains what makes people disabled (the physical barriers like steps) and how everyone can play a part in changing the world we live in.

Martyn Sibley’s blog and story.

My personal story It was June 1999. There were wires and tubes coming out of my body everywhere. I was hallucinating. I was sure the nurse was my Irish grandma (who had passed away nearly 10 years before). Worst of all I was violently sick every hour, for days. I’d never been in hospital for… Continue Reading

Source: For The Billion | Martyn Sibley

Pre-Election blues

I know where my X will be going in the upcoming county election, I know this will come as a surprise to many of you but this has been decided based on my own morals, impressions of the candidates, locally how they care about hometown and who I trust to deliver,  or try to deliver their promises even when this means going against their party leadership. 

For the general election my decision will be based on their parties records, their manifestos (once released) and my own individual research, these may be different parties in the May county and June national elections. This research does not include the plethora of biased news stories and memes doing the rounds. I say biased because the press is left or right wing and therefore interprets “news” and “statistics” to suit their own needs and not necessarily the truth. 

I respect all my family and friends and know there will be different opinions among us and you will be sharing things over the coming weeks. I ask you all please respect my request to keep my social media free from such posts, please do not tag me in them or share them to my timeline and I will reciprocate this. I say this because I see too many arguments that stem from politics and I know families who still are divided over the EU referendum. I do not want fall out over these elections with anyone. Politics like religion seems to divide people and cloud judgement so that all respect and understanding of others goes out the window. It’s as if people forget that there is more than one way to achieve the same results and I want to keep an open mind and friendships. 

Mum’s the word

There are many things in this world that frustrate me as a disabled person, but I have to say some of the most frustrating things have nothing to do with my disability and more because I am a stay at home dad. 

This pathway, or lifestyle choice has been partially chosen due to my disability getting worse but it was always the plan of ours that my wife would return to work full-time. After all she has spent a decade earning 2 degrees to do her job. Out of all the jobs I have done I expected being a daddy would be the hardest but most fulfilling one I’ve had. So far it isn’t failing to live up to my expectations with one small exception, breaking into the mummy world, mum’s mornings, mumsnet, mummy social and any other number of “mummy” experiences. I get frustrated at the amount of times I see posters with these on, or events run for stay at home mums, or mums that make and so on, I really do get the need for bonding and ensuring that new mums have support but dads do too, and there is no rule book that I’ve seen that says that support has to be mutually exclusive. 

Don’t get me wrong I speak to, and have, I think, made friends with a number of the parents in the playground. I am lucky that some went to school with me and some know my nieces so I’ve had insider trading if you like into this murky world. I’m yet to be fully invited or initiated or whatever rites of passage I need to undertake to be officially accepted in to the playground world of mums. Why I here you cry would I want in……. Well quite simply it’s because I don’t want my LG to miss out on play dates, having friends over and in the future after school groups, sports, playing, sleepovers etc. 

I get that after giving birth hormones are all over the place and there are mummy groups, I also understand why a daddy isn’t welcomed with open arms at these. I mean I openly admit I have no interest in debating the breast/bottle and I have no experience in being able to encourage other mums in the latest techniques. Nor can I sit and discuss degree tears or pelvic floor exercises (I have a niece and sister who are midwives so I understand the terms and I do have qualifications in fitness and exercise so I could teach pelvic floor techniques so I could do both) it is a world where a man is not welcome and I understand this. Unfortunately it is also where new friendships are formed. I missed out on baby massage when my LG was young, I missed out on many other classes and although most have been rebranded parent and toddler the world of acceptance is a funny one and these remain predominantly female. The friendships from these groups mean that the playground dynamics are already set and trying to infiltrate them are harder than being an MI6 agent. Mum’s go out regularly together and as a dad these invites do not extend to me. There are other dads in the playground but by the dynamics we say Hi but little more. 

In a world where we are fighting for equal pay and equal rights it remains curious that we have not made significant changes in the playground and the world of equality here is certainly reversed, it is very much a mummy dominated place even though more and more dads, grandparents and childminders become ever present. We sometimes focus on the repression all the time that we miss other things go staring us in the face. 

The friendship and bonds for many have already been made at playgroups or older siblings and it makes new member entry limited. It cuts down the number of play dates I have been invited on I am sure. People don’t want a strange man entering their homes, similarly you wouldn’t trust the care of your child into that of a strange man, but the friends made over years of groups is different for them and the world of mums. They don’t worry about others looking after their children Maybe having a LG I too subconsciously have been more aware of this. I mean our friends have left sons with me, I’ve looked after my nieces, I’m confident I can look after other people’s children. However my LG’s friends only see me for a few minutes each day, how do they judge if I am capable of looking after their child. All I know is that as the main carer for our LG I want her to grow up experiencing as many things as possible, I want her to be strong, independent and focused, I want her to be caring and understanding and to live her life and love with all her heart. Even though I know this can lead to hurt. 

I worry however that the inequality at the school gates will hold her back. It isn’t however being disabled that is what holds her back, it is being male. I’ll talk to most people I have a laugh with many parents I just feel I missed out on the opportunity to bond with other parents so that they can entrust their children into my care. 

I have watched a good friend filming the Unison women’s conference this past week and have been amazed at how far we are yet to come but also how many amazing people there are out there fighting to make a difference, to improve the world we share. I can’t however help but think they are preaching to the converted and the message needs to go further afield. We need to start looking at everyone as individuals capable of achieving anything. World Book Day is coming up and my little girl want to be Peter Pan, well is going to be Peter Pan and already she’s been told he’s a boy, and she should be Tinkerbell. I’ve told her I’m happy she’s Peter Pan, but worryingly these inequalities, these gender stereotypes are being introduced at a very young age and it is not made any easier if you do not fit the norm to a society established decades ago. 

Keep Britain Tidy……. 

…….was a slogan I grew up with. Every sweet wrapper, every chewing gum wrapper had it on and picture of a person throwing litter in a bin. In this world of recycling that we live in today, it seems as though some people have forgotten the motto Keep Britain Tidy. Now with out going all deep, dark, moralistic and idealistic about what makes Britain Tidy I am sticking purely to rubbish. 

I do not know if the keep Britain tidy campaign continues today, I hope it does and maybe I’ve just missed the symbol of putting stuff in the bin 🚮 but when I look around I fear not. However it is something I believe in, and something we are bringing our children up to follow too. Now don’t get me wrong, this doesn’t mean we do not recycle ♻ we do and we have more recycling than rubbish however we do still pick up rubbish when we are out. Well I don’t so much now as I can’t reach the floor one of the worst things about my disability, however my children do pick rubbish up on my behalf. 

In the last two days I have experienced two examples of littering the attitude to it, and what I think 🤔 I like to consider as the karma collector at work. Yesterday whilst at Colchester Zoo I was sat in my wheelchair next to a bin waiting for my family and friends (or famiends) to catch up to me from an inaccessible area. A young couple walking past me opened up some chewing gum and threw the rubbish on the floor. I said “seriously, you’re right next to a bin” to which the replied “f@#k you cripple” Now a year or so ago I would have erupted instead I ignored them and when my LG came to me from looking at the leopard 🐆 I asked her to pick it up and throw it away. 

Today, as we left the playground after nursery there was a piece of card on the floor. I said to my LG “can you grab that and we’ll throw it away on the way home” With no fuss she picked it up and off we went. When she passed it to me I noticed it was a lottery scratchcard. I didn’t think much of it and off we went. When we got to the bin I was about to chuck it in when I paused and looked at it and realised it was actually a winner. So apologies to anyone who has lost one but happy days that my LG continues to be her and tidies rubbish… It’s not a huge amount however it does show keeping Britain Tidy does pay! 

Strange Fascination Theatre – Make Theatre Accessible and Awesome

Strange Fascination Theatre – Make Theatre Accessible and Awesome

I cast my mind back some 20+ years to when we were forced to study Shakespeare in School. As a teenage boy, I have two memories of Shakespeare and probably because I was a teenage boy they were both immature, the first being the film of Macbeth when to our surprise the 3 Witches were naked, and the second was sniggering at the names of Bottom and Puck in A Midsummer Nights Dream. I dreaded reading the words in class, even being a bright student with good GCSE’s and the immature memories shared I did not develop a love of Shakespeare. Hearing classmates in turn read it out in monotone voices, unsure of what the words meant, where the story was heading and dreading having to read it myself it is fair to say it was my least favourite thing. I do however love the theatre and before my accident put pay to easy access visits I was a regular visitor, to a number of plays, operas and musicals. Even if I didn’t always enjoy the play, I enjoyed the trip, at least one or two of the actors and the theatre experience.

Strange Fascination Theatre company changed all this in one production of A Midsummer Nights Dream on a sunny afternoon at the Kings Head Meadow in Wymondham. I feel it is important at this point to declare a lifelong friend was performing in the play and helps run the company, however this friendship in no way shape or form has influenced this blog. In fact I do not think he even reads my blog as with his own business, 3 kids and performing I have no idea how he does all that he does. Strange Fascination Theatre Company offered to perform for free at the community picnic I was involved in organising, following our protest at KHM to save the park. They did this as my friend Paul wanted to give something back to the community he was brought up in to support keeping the play area we played in, and that our children now play in, and that our parents played in before us. In doing so not only did they captivate the minds of hundreds they changed something inside me. I can be quick to complain and moan, when you always look up in the world from a wheelchair, are often ignored by the world it is easy to become negative. I have to say though that Strange Fascination Theatre’s production of A midsummer nights dream was the best performance of any theatrical performance I have seen. They kept very closely to the bards original version and performed it in such a way that I think he would have loved. I’d always thought of his plays as boring, tragedies and comedies I couldn’t see how they were different. Monday it clicked, and the fun way the 5 actors performed not only made the story line click, but also the humour behind Shakespeares plays. I can’t help but think having this tour our high schools would be a far more immersive and enjoyable way of them learning, but then what do I know.

Now being a wheelchair user I find attending theatres very difficult, there is only a small % of wheelchair spaces compared to seats and for the popular shows tickets go far too quickly for me to even get the opportunity to see a show, the opportunity to watch 5 actors perform a show in a field that is accessible was something I was really looking forward too. Even if I do say it was with apprehension. My distaste for Shakespeare from school meant I was not sure this was going to be inspirational, however the rave reviews, the fact that my friend was performing and that he had convinced his fellow actors to perform for free for us meant I positioned my wheelchair in centre stage, when I say stage I mean centre of a relatively small area of grassland, that had been set up by the theatre company actors, and I understand the costumes worn and set used were also all made/adapted by one or more of the actors too.

Not knowing what to expect I sat with family and friends and the numbers of people around us swelled and swelled to the point that there was over 300 people waiting to see the performance. Shortly before curtain up the actors in character started to appear coming through the crowd, laughing and joking with us, telling us off for invading their garden and lightening the mood. There was a real mix in the crowd with babies of around a few months to senior members of society. I wouldn’t want to offend anyone but I know of several 70+ in the crowd. You had a mix of professional picnickers with baskets, crockery, glasses, cheese and wine and then you had me with my supermarket mega deal with fruit and a bottle of coke. Quickly my LG spotted Puck who she described as the Naughty, Cheeky Fairy, and I and a friend were set upon with him being accused of looking like a Councillor. What was so lovely about this performance was the obvious ad lib elements that the cast slipped in as if it was a line they used in every performance. The whole performance was put on in support of the community who took on the council, protested about removing the play area and the concoction of reasons given ranging from pigeongate to the noise of children playing making them prisoners in their own homes. All of these made their way into the performance and it just made it personal and enjoyable.

At 2.00pm the performance proper started and immediately the actors were full of energy, delivering their lines in a combination of well executed Shakespearean prose, comedy timing, and linked this with a number of quick costume changes as the 5 actors took on a number of roles each. These were done quickly, professionally and instantly a whole new persona was taken on as Oberon became Lysander or Egeus and Theseus became Demetrius or Bottom and Puck becomes Hermia and so on. The costumes expertly made by the actor who played Titania enabled the characters to change seamlessly and effortlessly (although in the searing heat I am sure it was anything but effortlessly but they made it appear that way) and a new character was born. The twist of the actor playing Snug (the Lion) & Snout (the Wall) being French allowed 21st Century Brexit Jokes into the play and the actor playing these roles was hilariously funny in them, as well as being serious and sincere in her role as Helena (and an excellent flutist to boot).

I cannot praise this production highly enough, they had a 20 minute interval half way through the performance and I didn’t want them to stop ( this said even during their interval the cast mingled with the crowd) and for someone who is in constant pain, who cannot sit comfortably for any length of time to be so transfixed by a performance it speaks volumes for their talent. Yes I was uncomfortable even sat in my wheelchair, yes the pain was spiking and the medication was being taken but I was so engrossed with what was happening in front of me that I almost couldn’t believe my eyes, nor the fact that I wanted to sit through another hour of it.

It is testament to the quality of the play that as the second half began children and adults alike returned to their seats and blankets. Kids came running from the playground (yes a playground), parents returned from the bar and the ice cream van and instantly once again we were all drawn into the world of Shakespeare. I despite studying it for weeks at school finally realised what the plot line was all about, who was in love with who, and why. Why it was forbidden and then the part Oberon and Puck played, how things became muddled, the audience were involved with constant jokes and flirtations, Children pulled in to play the servants to Bottom, more ad libs as children ran on set and Oberon joked that children should “be quiet, what did they think it was a play area”, more costume changes, a play within a play as Ze Lion was roaring as were the crowd at her acting and the steed Pyramus or should I say the Ass Bottom came riding in on. His lines perfectly muddled and corrected by a frequently infuriated Quince. As with the first half, their timing was perfect, costumes (and changes) brilliant, dialogue and acting first class and the second half too was also over too quickly for the liking of the crowd. The actors must have been sweating gallons but they didn’t just disappear at the end, no they mingled, spoke to some of their regular followers, met their new following, posed for pictures and entertained the many questions asked.

This was the last performance of the season of this play and I can fully understand why reviewers far more talented, although perhaps not as skeptical as me have raved about the play. It really was a masterpiece, I cannot decide whether I want to see them tour the same play again next summer which perfectly aligns itself up to open air, accessible theatre (along with me there were several other wheelchair users in the crowd not limited to the 2-6 spaces in a lot of theatres), or whether I want to see them reproduce another Masterpiece, do Strange Fascination Theatre have their own groupies, what would they be called? Either way they have many new fans following this performance and their fans won’t come much stranger than me!

Paul Andrew Goldsmith, Simon Michael Morgan, Daisy Plackett, Hayley Evenett, Steph Smoores Moore of Strange Fascination Theatre take one more bow, your on set relationships and connections were intoxicating, your character impersonations sublime, story line honest yet original and most of all you captivated the hearts and minds of so many people watching. Me being one of them. The best Shakespearean play I have seen and the most fun I’ve had in years.

From the mouths of babes………..

My LG has on numerous stages made me laugh so much that my body aches. A child’s logic if there is such a thing is so innocent and pure and their imaginations are remarkable. Not a day goes past when I am not thankful for the joy my son and daughter have given me over the years. I wish I had a Dictaphone for everywhere we go because I could write a book on what she says.

Yesterday though was one of those moments that really tickled me. With her grandfather being a farmer it has always been part of growing up for her to know where her food comes from. The vegetables grown, fruit on trees, berries, nuts etc. We have also had several funny conversations about where the various types of meat come from, and whether she likes that animal or not. She has also had us laughing about where eggs come from, and what types of birds lay easter eggs and why don’t we keep them. At the dinosaur park yesterday was however one of the funniest moments in relation to food. Walking around the dinosaur trail we were reading some of the information on the dinosaurs when all of a sudden our LG starts shouting.

“Quick, run, run away, I’m meat, I’m meat and it is a meat eating dinosaur”

The sentence in itself isn’t that funny, however if you can picture 2 pre-school girls squealing in delight, running as fast as they could away from two dinosaurs with strangers looking on, and me whizzing after them on my mobility scooter shouting after them. You couldn’t fault the logic of her though, she is meat and she really made me chuckle.