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

Parking Wars

I am the first to be frustrated by people who park like the photos below, blocking dropped kerbs and whole payments and it drives me insane the excuses you hear. Everybody seems so caught up in their own lives that as a society people forget their are others to think about. 

Yesterday a builder did it and as my daughter politely pointed out as we squeezed through cutting over plants the parking was rubbish. I said (as it was early) hopefully he’s just unloading and will move it later. Sadly not. For nearly 3 days a pavement was blocked and it didn’t need to be.

Today however as I was scooting home a BT Openreach van was blocking the pavement. Now I don’t like mentioning companies in my blog as they don’t necessarily have the opportunity to defend themselves, today though it is a positive story so credit where credit is due.  He was if there is such a thing as doing it perfectly blocking the pavement perfectly. Not only were signs up for pedestrians as a large hole was uncovered on the pavement but the man working was brilliant. He was keeping an eye out for pedestrians and with all the school traffic about he went into the road to ensure it was safe for me to go round his van, I couldn’t see past it so had no idea where the cars were. The man without needing to be asked, did it automatically and made sure I passed safely. It seems like a small thing for most people as you can step off the pavement and peer round vehicles however for me on my scooter I have no choice but to go into the road and today without the man’s help I would have literally been chancing passing the van to luck. 

It just goes to show that there is a right and a wrong way to do things, there are no excuses for bad parking, but workers who need to do a job could learn a lot from the BT man this morning. I like to give people the benefit of doubt especially when working, but your one or two seconds really can be the difference to someone’s life, trip out etc. I don’t always have my PA with me and I want to be able to be independent, I am however always dependent on a community having common sense.  It isn’t always easy but it can be done. 
Parking like this is however always a no, no, and can lead to you being prosecuted by the police. Worse though it can lead to someone feeling isolated in their community afraid to go out or in danger in the middle of the road. Please just stop and think when you park am I blocking pedestrians, wheelchairs, pushchairs dropped kerbs, would I want my child or relative put at risk. Never think I’ll only be a few minutes it won’t matter. It does it really does!  

If you come round the corner past the dropped kerb you are blocked and reversing on a pavement with children other people and families isn’t easy, and there’s no need to block the pavement
There is no excuse for this, not only was I blocked, parents with pushchairs had issues, and the bobbled pavement is designed to help those with visual impairments to cross

Imagine if you had crossed from here, you are visually impaired, in a road and then wham you are stuck!

The truth is it hurts…..

When I started my blog I promised to bare it all warts and all but the truth is this year I haven’t had it in me to write. I try to remain positive, I try to find solutions not just problems, I try to look forward with hope and happiness and I try above all else to show the world that despite my pain and disability life goes on. The reality is that this year I have been floundering so that it has felt that most of the year my head has been spent below water only managing to capture the odd breath of air keeping me alive.

It hasn’t just been my own health that has been the worst I’ve experienced that is the issue, the year has been my own annus horribilis. It started with the news that someone I love with all my heart had breast cancer and to further complicate the issue no immediate operation could be completed as she also had deep vein thrombosis. For the past 7 months we have as a family been very worried whilst all the time trying to remain positive. This in itself has caused a series of knock on affects, the most significant of which for me is the acceptance that I needed a part time carer to help throughout the day. Another huge step on my journey. I am pleased to say the prognosis is good now for my loved one following a mastectomy.

Following this diagnosis Granny with the white hair at the age of 92 passed away after a brief spell in hospital. She was the kindest and most loving grandparent you could wish for. Sadly she was diagnosed with Alzheimers towards the end of last year and although the end came quickly and peacefully it wasn’t any easier. Not only did she until last year get up early to cook fresh scones whenever we visited she was a great source of comfort for our family and my wife has happy childhood memories spent with her. Losing your grandparents I guess is a part of life as they get older, but it doesn’t make it any easier.

One of my best friends moved away for personal reasons with very little in the way of a goodbye, and it is easier for him to have no contact with me, despite several messages and emails from me. His brother was one of my best friends and he died 13 years ago after a night out with me. It now feels as if I have lost them both.

Shortly after this news a friend, former footballer and colleague, mentor and genuinely all round top bloke was diagnosed with Terminal Cancer. He went from winning darts tournaments in April to saying his final goodbyes in June. This hit me hard as I am fast approaching 40 and I have lost too many people in my life already. Another former colleague lost her battle with cancer this month and another friend had been working off his bucket list as he was given months to live earlier this year. He passed away this month and we said our goodbyes to him last Wednesday, complete with a Motorbike Parade and Guard of Honour. This all hurts and has contributed to it being a hard year. Stress aggravates my pain, sleepless nights and guilt for not seeing them more make me question how good a friend and person I am and makes me hate my disability. It is hard to explain the physical as well as mental affect these sort of things have on me. I know when I look back on the year there will have been fun and positives it is just so hard to see them when the lows have been so extreme.

So my blog has been neglected, my pain has spiked, and something had to give. The blog was the easiest thing I have that I could stop and so I did. Now I am trying to look forward and adjust to life with my relatively newly appointed PA helping me.  To give myself a focus I am on a diet trying to lose weight which is tough when exercise is impossible but I am starting to feel like there is more I can do to help manage the pain and to start living life again. My weight is another jigsaw piece in this and I have lost nearly 2 and a half stone since September. My family did the Alzheimer’s Society memory walk in September in memory of Granny with the white hair and we are now preparing for the Christmas celebrations and our Wedding Anniversary. It has been a tough year, it has been a painful year and I have struggled and so I hid from the blogging, those who know me well knew this, for some of you perhaps this gives you a glimpse into the past year. Fortunately I have a very strong, loving and understanding network of family and friends who help me with the dark times, a wife who I am sure I don’t deserve, children who make me proud and smile and famiends who I can rely on. Here’s hoping that with them I get back on track, that 2018 brings with it fresh challenges and exciting times and a few more blogs…..

The bad, the good and I guess it makes me the ugly…….

Yesterday my wife, LG and and Grandad took a trip to the cinema. This is no easy thing to organise in the first place. Our cinema choice is severely limited by access restrictions before even leaving the house. We have three in Norwich and one in Dereham. Dereham I am yet to try in my wheelchair however a recent purchase of a Spree book means this will change in the near future I am sure. Norwich is an issue as parking at two is limited which means only one really is an option for us. There is a multi storey car park nearby (within easy pushing/wheeling distance) and it has an abundance of disabled parking bays meaning it is ideal. Well in location at least.

It is an Odeon cinema and they have an extensive guide online, they tell you all about their wheelchair spaces, their premier seats and so on. Unfortunately in the Norwich one at least they don’t have premier seats that are accessible in many if any screens, I cannot sit in my wheelchair at the front of a huge cinema looking up to watch a film. The pain is unbearable, it leaves me with the choice of watch the film in pain or drag myself up stairs to comfy seats and watch the film in pain. Not much of a choice really. I have tried to call and speak to a person, but no efficiencies mean that it is an automated service. I had similar issues when trying to book seats for the Star Wars premieres, I cannot book me, a carer and 2 “normal” seats. I am becoming increasingly frustrated with cinema trips, they are anything but relaxing.

Follow this up with our lunch at Frankie & Benny’s, Riverside, Norwich and it was a completely different story. Usually I arrive at a restaurant and immediately a table is set and a chair removed for me to wheel up to the table. Now I’m not saying this isn’t good service, it is. However most restaurants miss one vital step, that is asking me if I can transfer out of my wheelchair (which I can) and whether I would rather sit in my chair or at the table. Why you ask, well wheelchairs aren’t designed to be sat at a restaurant table easily, I am often knocked or get my handles bashed, not fun whilst you are eating, and also because some chairs are more comfortable to sit on when eating. I want to give the staff here for top marks, first of all for asking the question, and secondly for asking me the question not the person who was pushing me. Top marks for awareness here. A simple, can you transfer from your wheelchair sir? and this is your table would you like to transfer and we can take your chair or stay in it were two fantastic questions and I wish I had taken the name of the staff to thank them properly. It is a small thing but it shows fantastic awareness. MY chair is my legs when I go out but I am not super glued to it. The Odeon could learn from this and offer alternative access/design and more comfortable seating options in their screens.

That leaves me the ugly, not much more I can say really………………..

Why Pavement Blocking is an issue for people.

Below is a link to the first ever video I have uploaded to you tube and social media. With it I posted the attached message

This morning I took this video showing why pavement blocking is a serious matter for disabled people and that they can’t just go down a dropped kerb when their path is blocked, sometimes you can’t see things blocking you and there is nowhere to get off the pavement. As we cut across the garden my 4 year old was saying how bad the parking was and how dangerous it was and that she felt naughty walking on someone else’s garden, she was right on all counts. This vehicle was blocking the whole pavement despite the road being plenty wide enough to not need to do it. I have deliberately not zoomed in on the van as this isn’t about slating a company it is about educating people as to why you can’t just step/wheel into the road as there is not always a dropped kerb to wheel down and for others there is no view to safely go into the road and round the obstruction. Had the garden had a little wooden fence like the first one in the video we would have been stuck. My daughter would have been guiding me back to a dropped kerb and we would have been late for nursery. All because someone didn’t think. So when you park, stop, check the road, is it wide enough to not need to be on the pavement, if it isn’t make sure the path isn’t blocked. If you are delivering goods to work I understand drop them off, have some one there to advise people and then move as soon as possible. This vehicle wasn’t unloading and had been there 30+ minutes before I took my video.

The video isn’t intended to cast any bad aspersions on the person who parked there just to highlight the difficulties it can create. I will be the first to admit that before I became disabled I didn’t think about this when parking and it is only now I realise the issues it causes people. This is why I took the video. It is intended to educate not castigate. The van is still parked there some 3 hours later 😦