Retirement 2 years on!

No prizes for guessing the content of this blog, for once the title gives away the text. When I look back to my teenage years I think thank goodness there wasn’t social media in my time. Don’t get me wrong, I had a fantastic time, more fun than I ever imagined and I am fortunate that I still some 25 years on see many of the people who also share those memories. The twenties was when things changed, I had my car accident and lots of things I thought I knew I would do, loved doing and had planned were taken away. It was an instant removal for four years of recovery.

After this my stubbornness and willingness to not give in kicked in. Before I knew it, and against my consultants advice I was back working at a college. It was hard, it was painful but it was rewarding and I was there for 10 years. Unfortunately as I got worse my ability to work diminished and I had hours cut, and cut, and cut some more until it got to the point that I knew what was coming but was dreading hearing. I was going to be retired due to ill health. Those words were for a number of weeks almost as painful as my physical pain itself. If I couldn’t work what would my role in life be, what’s my purpose, how am I a good role model for my family, how will we cope financially, what will my wife think, what will my family and friends think – these are just a snapshot of some of the thoughts that were running constantly through my head and that still do this day do. I look to all the world on the outside a happy chappy who has accepted his disability and who gets on with life putting his best foot or wheel forward, however one thing you learn to do as a consequence of masking your pain is learning the ability to also mask your feelings. Despite having amazing people around me I felt worthless, useless even and yep some days and nights when I’m awake suffering from pain I slide back to those emotions.

Luckily I had a pain psychiatrist as part of my consulting team and I remember vividly the sessions we had together, the tears and emotions that came out and the sheer relief of offloading was a huge step forward for me in accepting that ill health retirement was the next step in my journey. So what did it really mean for me, I wasn’t becoming 68 overnight, I was 38, I was, I am too young to be retired. To start with I had the pain to contend with, to get back under some sort of control if I could. We had my medication regime to change, I was fed up of taking over 45 tablets daily and not knowing what was and what wasn’t helping. Not working meant we were able to do this, I was able to go through withdrawal off one and try another and so on. This has been done with each of meds and I have got rid of some #celebratethemsmallvictories . The first step forward in the last two years since stopping work has been that I now have medications settled in a regime that have for now stabilised my pain, not reduced it so that it’s gone but reduced it enough so that we can plan my week to a certain extent and know that with careful planning and pacing achieve most of it. The pain is high but my meds allow me function to a certain extent, to live life rather than just wallowing away. This has with it some issues as those who don’t see judge. I mean that people who see me out only see that, they don’t see the days preparing to go out, the days recovering afterwards nor all the help I receive to get me out in the first place. Nonetheless being able to go out, even just once a week to shop gives me such a buzz and sense of achievement. Albeit an entirely different buzz to my 16-24 years and what I was doing then and thought I’d be achieving now. The sessions with B were excellent in making me realise that goal setting is important but so to is goal revising. We don’t have crystal balls and we don’t know what we may or may not achieve.

I have after a very long process and at great personal expense to the family finished coordinating making our home wheelchair accessible. Not as easy as one may think even living in a bungalow but we’ve done it. We’ve paid for it, and it will be ours until the end. We’ve negotiated the minefield that is adult social services care. This was another huge step for me.

Having to admit that I needed support during the day was a gut wrenching decision, but in truth it was needed. I’d survived for years with help and support from my famiends (family and friends) but I needed something more regular, something that I could plan days out shopping, to help me in the hot tub for my Hydrotherapy, to dry and dress me afterwards, help with housework, cooking, and any number of obscure tasks that most take for granted. Here I was perhaps most fortunate of all when finding my personal assistant. A very good friend’s circumstances meant he was looking for a part-time job and with our children growing up with one another and being a close family friend it was a match made. Admittedly the first time I needed help drying and dressing was a bit weird and we both had to get over the whole friend / PA role but it works well. I have company, I have someone who laughs with me as well as at me and most importantly someone who cares about me as a friend first and the person he cares for second. This has meant that moments like toilet accidents and face plants can be laughed about and sorted without the awkward embarrassed feelings I was worried we’d have when getting help planned. It has also meant that family who had helped have been able to go back to being family first and occasional support second.

Personally I have been working hard to lose weight, the unfortunate side effects of many of my meds is the weight gain and increased appetite. The more I weigh the more pressure I put on my spine and joints and so the vicious circle begins. Trying to lose weight without being able to exercise is not easy, and loving exercise in my former life I have started slimming world, this has given me something to focus on personally since mid September and I have lost 2 & a half stone thus far.

Most of all though my biggest and most enjoyable task since not being able to work but putting all the adjustments into life is being a parent. Not being in agony all the time, not taking so much medication I couldn’t be alone with my children and not using up spoons on some mundane tasks means I have been able to be the best daddy I can ever be. Yes sometimes the activities doesn’t look the same as when others play, or it is short bursts of playing and I’m one of the few dad’s who regularly do the school run each day.

I have heard my parents and in laws say they have never been as busy as when they retired and in some respects this is true. My financial worth to my family in pounds and pence may have decreased by my real worth in being there, having friends over and contributing to our household have increased ten fold. Yes I still have days where I like to crawl in a corner and suffer silently, but I also have fun days and laugh and play and try to be the best dad I can be. If I wasn’t injured I’d be a regular stay at home dad, but having a disability means I am to some perceived differently. I have however in the last two years since retirement reflected on lots. I don’t regret any choices made, I don’t regret any decision made and I have learnt to accept that life is what it is. Those who judge you have no right to and we all have sacrifices that we make, we all face issues and life is never a bed of roses so you can only do your best, surround yourself with the right people and they will help you through the good and bad times and it can perhaps be summed up best as

Those that matter don’t mind, and those that mind don’t matter.

Well I’ve waffled on, used my spoons and now it is rest and relaxation until hometime and teatime…..

What is inclusion and what is reasonable

As a disabled parent I have perhaps a different perspective to some others. Even as I write that I get a sick feeling in my stomach and think hang on that’s wrong, that’s not true, surely as a society we all have a collective responsibility to change, want change, implement change and to campaign for change? I know many of my friends who know me and read this share this view of society and perhaps therefore I am preaching to the converted or the wrong crowd but I just need to get something of my chest.

I am on social media part of the dad network, network and in a dad’s forum this week a dad shared a newspaper article about a family who are suing a theme park over the lack of provision of a changing places toilet. This is a toilet that goes beyond the basic level of the antiquated disabled toilet design. It is one that is more accepting that disabled access goes beyond the notion of needing a slightly larger space for a ♿. Disability comes in all shapes, sizes and abilities and whilst our home bathrooms will always be unique to us and our needs there is a best design to be as inclusive as possible. The person posting said he was conflicted about this action, had empathy for the child but at the high cost put in the newspaper article regarding the cost of installing a changing places facility surely it was too much for this family to ask for them to pay to install one.

I get that some people are conflicted and this usually comes from a lack of awareness or understanding. What is therefore reasonable action, me, I read as much as I can before deciding, in this scenario both sides of the argument would be a good starting point not just the bbc report as let’s face it the headline using the word “sues” is in itself misleading. 99.9% of the time when a disabled person sues a business under the equality act 2010 it is not for financial purposes but to change the world for the better, to provide better facilities, service, or training as recently in the case of bus spaces highlighted by Doug Paulley.

Sadly though because of the emotive language used instead of a group of people supporting parents and children (kind of what I expected of the dad network) there were lots of people saying things such as “it’s not a child suing its a mum trying to make money” and “the world doesn’t evolve around you get real”. Worse still were the ones saying what’s he doing at a theme park if he can’t use a standard disabled toilet how can he go on the rides! Then there was the ones saying this small family run company can’t afford 40K to install one (a highly inflated cost) and that the mum will ‘s playing with people’s lives as jobs will be hit (according to the business). As a disabled campaigner I have heard many, many excuses from big businesses and I know the reality is never as one newspaper article portrays it.

I tried as a disabled parent to enlighten them. I tried explaining that the way the equality act is written that you have to sue for discrimination and that sadly there isn’t an unbiased agency that can act as an intermediary and that after exploring all options there is a point when you have to take action. That this isn’t done lightly and is usually at the cost of the disabled person as legal aid is all but a thing of the past. Sadly for many of the people commenting what I was saying fell on deaf ears, it is important to say there was 5 people who openly supported me and what I was saying but 5 out of thousands shows what we’re up against. They didn’t seem to believe what I was trying to say and I was saddened and sickened. I wondered if it was because it was a mum, not a dad in the articles and being the dad network did this influence comments, but perhaps that was me grasping at straws. I’d rather believe they were anti-mum than anti-disabled. I was sickened as I know how hard a day out is to organise. I was sickened as I know how lonely I have felt at times unable to do the things others take for granted and I was saddened. I was saddened that despite the feelings of sorry that the boy was disabled there was an air of tough luck about the majority. Firstly I and all disabled people I know don’t want anyone to feel sorry for me, this is me, and I am happy being me, I don’t want your pity or sorrow, and secondly all we want is for the world to be inclusive and this is much easier to achieve than many businesses want you to believe.

Above all this though I was saddened that the people commenting are DADS or EXPECTANT DADS, and that means they are going to be influencing a whole new generation of people to have the same ignorance and views of ablist living and this shouldn’t be the case. My 5 year old LG has more empathy and understanding of the situation and despite the comments of what next little cafes closing as they don’t have a toilet big enough she too understands what is and isn’t reasonable, she can see at a glance what can be done, what is good parking, what makes going out with daddy possible and also what makes it impossible.

So in the vain hope that just one or two people who were unsure of what is reasonable can have their minds changed I hope they have read this blog and also the blog below that details all the steps the family took before filing at court. It isn’t a decision any parent takes lightly and really we shouldn’t have to, unfortunately though the world is full of people who through inaction become part of the problem.

Honestly dads we need to stand together and support everyone simple as.

So if you want more information (and I haven’t bored you) have a read of the mothers blog as to why they got to where they are, what they tried to do first etc etc Society needs to learn how to be more inclusive and I thought as parents we had a major part to play in that.

https://ordinaryhopes.com/2018/05/24/why-my-11-year-old-served-court-papers-to-flambards-theme-park/amp/?__twitter_impression=true

One wheel forward three stumbles back

It’s the same old story of a spoonie. If you’re going to dare to have some fun, you will reap the consequences. This weekend was a fun weekend. My LG was super excited about the royal wedding and squeezed into a bridesmaid dress from a year ago to watch it. We watched it with Grandad who was also celebrating his birthday. About a 40 minute drive so on the cusp of my limit. A quiet day to most, but nonetheless I returned home shattered. In the evening we had friends over for an Indian takeaway and watched the greatest showman and Jumanji, Sunday really should have been a rest day.

I say should as it wasn’t, it was a fantastic day spent with friends in a nearby forest. I hired a large mobility scooter from the forestry commission with full on suspension and captains seat so I could be as comfortable as possible and off we went exploring (after breakfast of course) . We followed the Highway Rat 🐀 trail had a picnic lunch and then did a forest walk/wheel after lunch. It was a beautiful sunny day, my head is showing signs of a tan and we laughed lots.

I consider myself very fortunate as my family and friends are very understanding of my pain and disability and although we often laugh and joke about it they do get it. One of my closest friends also happens to have started being my Personal Assistant (weird at first but it works perfectly) he was semi retired and spending a lot of time with me helping out anyway so it was sort of the natural progression. By the time I returned the scooter my body was certainly telling me I’d done enough, and all that was left to do at the weekend was a meal for grandad’s birthday with the in laws.

I collapsed into my rise and recline chair and was pleased to see some lovely photos of the day, taken by our friends, including this lovely one of me and my friend/pa below.

As I say a lovely weekend, tiring yes but for my wellbeing days out are so important. The payback though is honestly a bitch, since returning home the pain has spiked and I just cannot get comfortable. Meds are up, extra PA hours are being used and the days are drifting along in what is best described as a pain psychosis episode. Conversations don’t make total sense, sleep isn’t happening and I am certainly paying the consequences of having fun. Don’t get me wrong I’m not regretting going out but as many people see me and say things like oh you must be getting better the reality is vastly different I manage my condition so I don’t become a hermit anymore. Today I have ventured outside in the garden and am writing this with a lovely coffee and the help of speech software. Now I’m signing off for a catch up with a friend who has just arrived with his little boy.

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…..