Neglecting life…. 

This comes naturally to a spoonie neglecting life, even when you are consciously trying not to do it. The stress just makes sure that you end up doing it. I have found 2017 really tough. My health has been worse, important people in my family have been ill and diagnosed with cancer, my granny with the white hair who I’ve blogged about before passed away last week and a good friend who I have previously worked with and played football with died after a short but aggressive battle with Cancer the week before. It is undeniably an incredibly tough time emotionally and physically. The knock on affect is that my moods swing, people get upset with my mood and comments and not just the flippant comments but sincere ones to. 

I lie and say things are OK, but really inside my head and heart are shouting why, what the fuck! Every year I think next year will be better for us, next year I’ll have more time for my family and friends, next year will be our year. Once again I find myself wanting another year to be over in hope of another year being better. 

Now this isn’t a woe is me post as there will always be people feeling worse than me, it’s more of a post acknowledging that I am human and at times I need help. I have spent many months sorting a personal budget and a PA to help me, another big step in my journey of needing help. I am trying to sort a power chair, I have my PIP assessment paperwork to complete, my motability car contract to renew and my driving capability assessment to complete. I have another MRI scan because of my recent falls and tests for issues with my bowels and my diary is full. Not full with fun stuff but important stuff. The spoons just don’t go as far these days. 

Life is tiring at the moment and there are good people I have not seen in months. I’ve done two blogs in about 3 months and I’ve missed a number of WAG events. All of this makes me feel like I’m letting you all down. I struggle daily to get dressed and do normal things and I worry about most people before myself. It means the pressure builds and I forget things. Life has to be planned meticulously and I hate not being able to be spontaneous with my family and friends. 

It is even harder at times like this when I see friends and family mourning and missing loved ones and not being able to instantly drop everything and be there. So whilst I have been neglecting life recently please know it is not through choice but necessity. Some long battles and some short ones have taken their toll on me and the need for so much change has left me tired. I’m hoping things will improve but I always say this, so if you’ve been waiting for a catch up, a blog or even a text ping me another message, I will get back to you. I’m just prioritising spoons for DWP paperwork, social services paperwork and two funerals celebrating lives of two important people. 

For now peace out, be kind to one another, look for what makes you unique but also gives you shared causes to believe in and remember if I can keep on wheeling so can you! 

Speech Recognition – A first for me

This is the first blog that I am writing using speech recognition so this could be interesting to see what comes out. I have never used speech recognition before however with the pain I suffer regularly I am finding it increasingly difficult to compose my blogs and keep everything that I like to do up to date.
As part of the work I have been volunteering to do with Wymondham Access Group we have in our first year achieved a number of things, one of which is being given charity status and this enables us to access a number of tools via Google one of which is this speech recognition. I have written this blog using speech recognition in under 3 minutes this for me is amazing, I have not had to use my arms, I am sat back with my head, neck, shoulders and back all supported in my large custom reclinable chair. It is phenomenal for me that I have been able to do this and I hope over time I will get more used to using this tool and I will be able to write more blogs. It has been strange and it feels weird to be sat here in my house I’m not going to lie talking to myself, however I think everybody who knows me thinks I’m a little bit crazy anyway so I guess anybody listening in will not think this is peculiar.

I am now going to check through this blog and see how accurate the speech recognition has been whether I need to change a great deal of spelling and punctuation and I am hoping that the use of speech recognition within Google Docs will really help me moving forward not only personally with my blogs but with the volunteer work that I do with Wymondham Access Group. It has been a great privilege being the chair over the first year and I look forward to continuing in this role over the coming 12 months.
Having checked through the first blog I realise that the punctuation will only be in if I remember to say . , : excetera which funnily speech recognition cannot determine when a sentence has come to an end. Note to self next time you’re writing try and improve on this. There were only 2 spelling mistakes and these were on words that I think were misheard so for me it has been a productive way of writing a blog. I do however need to learn how to go back and correct words that I have already said and I need to make sure I know what I want to say so that I do not make sounds like um, err, hmmm, other than that I think this been a successful first attempt. Anyway I hope you enjoyed reading the first blog  as much as I have done speaking it, I know it doesn’t say a great deal however the smile I have on my face is huge, it has been without a doubt my favourite blog in many many months.

Landmark victories or more red tape?

This past few weeks have been very busy for the courts, for disabled campaigners, for disabled people and for the various committees, government departments, ministers, and those tasked with protecting the rights of some of the most vulnerable in society. They are all there with the goal of supposedly allowing us the opportunity of integrating into society and allowing us to enjoy some form of independence, some form of enjoyment, sport, cinema trips, theatre, even a simple trip to the park with family. The reality is none of this is simple there is a huge national campaign for #changingplaces and these are desperately needed so that disabled persons are not changed on floors, buses and trains are inaccessible and require forward planning, booking of assistance and numerous other things. There is rarely the opportunity for a disabled person to wake up see the sun is changing unexpectedly and deciding there and then they are going out. I watched a you tube clip recently that had someone using a go pro to show what it was like taking their child to the toilet on the odd occasion they treat them to a day out. some 30 minutes later and a trek into a shopping centre they return.

Now this isn’t meant to be a woe is me post, the reality is I have it so much better than some, although so much worse than others but it is about making the most of what you have. It is difficult to do this when there are so many barriers in place. I hope to one day watch a high standard football match live again, although locally the opportunity due to a lack of facilities and the seating arrangements/shortage of spaces etc make it impossible. I cannot remember the last time we went out without google searching facilities, parking, access, contacting the place to discuss what is there, what else is nearby and so on. I just can’t help but feel that every time a new article like the ones below come out, and judgements like today come out (that are so woolly in the details) that although they are considered victories I can’t help but think it just means more red tape is created, more training is then required to give people the skills to do what is needed of them and funding isn’t available, more hoops are placed in front of people who in my experience truly do want to help it is when you go up the food chain, see the financial “burden” it will place on the company and out it goes. Nevermind the financial burden I place on my family, it is good that as people they didn’t decide that I wasn’t needed.

I want to be positive about them, I want to think that good will come from people revealing how embarrassed they were when they were forced to soil themselves or they blog about trashed wheelchairs. I want people to stop putting a price on what is right to help other human beings, assistive technology is out there, yes it is expensive but what price freedom and independence? Many of the owners of the companies that make millions claim they cannot afford to really? Even the simple blue badge bays are amazing for us to do simple things like shop. These are not really monitored by the shops/car park operators indeed I even had a person recently say to me there’s nothing we can do about it if people park there. I have two issues with that one – why would anyone take up a space of a blue badge holder if they do not have a blue badge, it is selfish and lazy, and two why can’t companies do something about it. In a supermarket repeatedly say over the loud speaker system about the car being parked there, embarrass them into moving it, stop thinking about profits and start thinking about disabled people. If you see someone park in them challenge them politely as a disabled person I have forgotten to put my badge in and I would not be offended if someone reminded me, nor would I be bothered if someone working in the shops asked to see the photo to see if the right person was present when the badge is being used. The system does get abused embarrass those too. I can’t believe clubs like Liverpool and all their millionaire stars who like the positive photos going to hospitals and so on cannot get the facilities right at their stadiums!

I hope you enjoy some of the articles attached, and I know that I am proud of people like Doug Paulley who take on the companies and challenge the systems and win these rulings for us all, I can’t help but think the system itself is broken though when everything has to be fought for!

Disabled Access: Premier League Clubs Could Face Sanctions

Wheelchair v Buggy Supreme Court Case

No guarantee of help for disabled passengers

Paralympian forced to wet herself on train

But daddy, I don’t want to make you poorly

…….is a phrase I have heard several times this last week, my LG has had a cough and cold and she has had several spikes in her temperature as her body tries to fight off the virus that so many of us pick up this time of year.

There is not much you can do but comfort a toddler, let them eat what they want, encourage them to drink and be there for them to cuddle. It is the first time that she really has been ill, and so the aches and pains are all new to her and difficult to understand. As her daddy I want to be there for her, to cuddle and hold her and tell her it will all be alright.

Several times however my LG has pushed me away and says to me that she doesn’t want to make me ill. Very sweet and caring, but it goes a little further than that.I said to her it is ok, if I am going to get it I will, do not worry give me cuddle and it will be ok. My LG however responded with “but I don’t want to hurt your back and make you worse daddy”

As I have chronic back pain as part of my disability she has heard me say how much coughing hurts and that I always try and keep myself away from people who have a cough. The reality is that you cannot avoid everything I know this, but she doesn’t and bless her even in her own pain and illness she is still caring about me.

With a new found mindset I am now proud of her reacting like this instead of feeling like a burden to her. I accept that I am in pain and my LG understands, helps, cares, pushes my wheelchair and is proud of me, and I am proud of her. Did it tug on my heart strings? – of course it did, did I fleetingly feel guilty? – of course I did, but I cuddled her, I reassured her that it was OK and that I didn’t mind and it was more important for her to concentrate on getting better. I know I am helping to raise a very beautiful, caring and well rounded LG and that makes me very happy.

Tourism and Disability 

I recently gave an interview to a local reporter highlighting some of the issues that disabled people face when trying to book holidays and plan days out etc. I shared the online article a few days ago however a friend popped the original story from the newspaper through my door this week and it gives some more of the quotes and highlights some more issues and problems. 

This can be further highlighted following on from today’s lunch. We were taking our LG to see Father Christmas this afternoon and since it was a bit of a trek that clashed with numerous medicine times we decided to have lunch before. We used good ol’ Google to find some places and I went through the usual rigmarole of phoning and emailing to make sure they were accessible. We settled on one place who said apart from a small step in which can get a wheelchair up easily it was fine. We arrived and the 3 disabled parking spaces put the front were full of 4 cars parked across the hatching (3 of which had no blue badges on display). My wife popped in to let them know of the problem the solution to them was to drop the disabled person off and they then gave her a pass for a nearby car park. One slight problem the disabled person was driving! Thanks to the motability scheme and some fantastic adaptations many disabled people can drive now! 

I managed to abandon my car opposite the hotel outside a home being worked on and we crossed over the road and on to the path. Then we had to back up and go back on to the road. The entrance had some lovely wide doors unfortunately they were at the top of two steps. Luckily with the aid of two crutches and two family members I was able to get up these steps. We got indoors and we had a further 2 steps (pictured below) to negotiate to get to our table. Talk about disappointed 😞 the problem was the staff have seen some people in wheelchairs negotiate these steps quite easily for me not so. By the time we sat down to eat I was sweating buckets and in incredible pain. I then had to hold onto the need to go to the toilet as there was no disable toilet. 

Now I have resisted naming the eatery as I believe it was ignorance that led them to say they were accessible, the staff were lovely and helpful and helped me in and out, and have no control over those abusing the blue badge bays and the food was very good. I do however wish they’d said we’re an old listed building and so there are these issues. I could have compensated with extra meds and so on or found somewhere more suitable. I will be emailing them giving them ideas as to how they can improve their access and be more open in the future. I understand that old listed buildings cannot make doors wider etc and accept it to a certain extent. It is however these sorts of issues that make planning holidays, trips etc so complicated. It is also why access groups are an important resource! 

Christmas coming early????

Dare I tempt fate, well yes I am going to because for me and my family this would be the best Christmas present and even my 4 year old agrees with this. Finally after 21 days of barraging, tweeting, talking to every few days, reporting it to 3 different people on 3 different systems and being passed to several different departments only to then be told to log it online and upload information and many, many tears I have finally been contacted by Felgains of Ipswich to confirm they have received payment from Thomsons for my replacement wheelchair. They have ordered it and are arranging for it to be couriered direct to me.

This is a massive boost for me and my family, it means I will soon have my legs back, well my wheels but they are my legs and that is why I fought so hard, and so determined to get it replaced as quickly as possible. It is lightweight, reinforced and built to my leg dimensions and with a high back to support my thoracic spine. In short it will allow me to go out again without significantly increasing my pain, lowering my mood and effectively bringing the day to a premature end. It will hopefully mean that the trip to Father Christmas at Thursford will be done in comfort, and taking my LG to watch her first ever Pantomime with 4 generations of our family will be an enjoyable experience and not one that leaves me unable to look after her for days afterwards.

I am so excited it is hard to put it into words what this will mean for us all. Roll on getting my wheels back……………..

Disabled Friend v Lame Friend

Disabled Friend v Lame Friend

I just wanted to take time out to write a very personal blog to family and friends. I am aware that for the last few months I have been trying to catch up with many of you and I have failed miserably.

Everyone who I was meant to catch up with please accept my apologies. Our first foreign holiday since our honeymoon (9 years ago) took lots of resting up in preparation before going to be able to handle the flight and journey and still enjoy the holiday itself. Since it was our first and probably last overseas for many years I really wanted and needed some quality time with my family, and I am sure you all understand this. Having my broken on the flight home has not only left me grounded, but as they are custom built to my measurements & the ones I have kindly had lent to me, or borrowed from shops etc for the odd trip out have sadly massively increased my pain and to be honest I am trying to avoid using them as much as possible.

Thomson have finally agreed after lots of blood, sweat, tears, shouting and more tears, to replace my wheelchair. I am now waiting for them to pay the company I originally purchased it from so they can order me my replacement. Laughably they initially told me a BACS transfer can take up to a fortnight to go through and many other things, until I told them I was disabled not stupid, and that having worked in a Bank I knew BACS payments should go through same day now. I have now had Felgains on call for 2 days checking their bank for the transfer which is yet to arrive. This has left me tired and in need of a holiday although this will not be in a plane…hehehe…😛 I am hoping they receive this money tomorrow and that my new chair arrives before Christmas and I will get to see many of you during the festive season or early 2017.Once again Felgains have been brilliant throughout, like they were when we first purchased the chair and have agreed at no extra cost to courier the wheelchair direct to me to speed this up. They may be an hours drive away but their customer service has been second to none, they had my confirmation the chair was a write off the day after we landed and the letter and quotes needed emailed to me and in paper format within 24 hours meaning the only delay has been Thomson themselves.

I know I have in past years gone AWOL this time of year as the anniversary of my accident approaches but this has not been the case this year, in fact I have been feeling much better prepared mentally about this, this year more than any other year typically. I have reflected on all I do now and the good things I have as opposed to what I have lost, and this has been a huge change. Especially ironically as I have been stuck indoors and usually cabin fever creeps in within one afternoon.

I am truly very sorry for my lack of getting out and seeing people and feel I have let many good friends down (including the chance of meeting several new born babies who will be walking at this rate by the time I see them) but please do not think I have been ignoring you, please do hassle me to book some dates in, in the new year and above all else please don’t give up on me and we will catch up soon. Love me xxx