lockdown Archives - Wheelie MS Advocate

Out of the darkness comes light, this lockdown and COVID-19 has made me think of how far I have come in 18 months.

I have strived for over 30 years to prove myself to prove to every employer that I was worth it, that I was good at my job and for years and years I never quite got where I wanted to be.

In October 2016 I lost one of the most supportive managers I had had both as a manager and a friend and was really sceptical at the thought of a new one coming in.

But when he arrived my scepticism quickly disappeared I had finally found someone who wanted to listen to me.

I spent the next 9 months proving to him what I could do, he pushed me hard at times but I still met his deadlines.

Opportunity

In June 2017 I finally got the opportunity to apply for the job I had worked so hard for and wanted so badly.

This is where I should have known I had #Problems because I really struggled with the application form! Share on X

This is where I should have known I had problems because I really struggled with the application form and when I finally secured an interview even though I had revised so hard, I completely lost it, the words wouldn’t come out, my brain froze and all I did was go around in circles and pray for it to end. I left that interview knowing there was no way I had that job.

For some reason, though my manager believed in me so much he wanted to give me a second chance with a further presentation and interview and again even though I prepared when it came to half way through the presentation I froze, the words were in front of me on a screen and even on the laptop but I just couldn’t get them to come out.

Thankfully he trusted me enough to know I could do the job that was expected of me and I finally got the recognition that I had worked so hard for and then came October 2017 which you can read more about it here.

Cognitive functions

For someone who had always been a natural organiser and a tenacious problem solver, I was later to find this is the side of my brain were my lesions are which explains where my executive decision-making skills had gone, along with my speed in thinking, multi-tasking and my ability to meet deadlines.

This is caused by the myelin sheath breaking down resulting in lesions, almost like wiring that is split. With less myelin, neurons cannot communicate with each other as quickly, speed of information processing slows down making it more difficult to keep up with rapid conversations, react quickly, think things through and struggle to do things under time pressure.

Sadly it is also exacerbated by fatigue which is a major symptom of MS and often resulted in my falling asleep in meetings, none of my colleagues knew at the time that I had suffered from these symptoms for a good two years prior to falling asleep in the car, I had just tried to manage it with Mcdonalds Coffee and napping in car parks on the way home. It was a standing joke if I had an early meeting 2 hours away I would be late.

What my colleagues didn’t realise was I had been up for two hours before I had even left home to try and get my sensitivities working and at times be able to see enough to drive!

Beige background with a picture of a typist chair just going out of shot

Voluntary Redundancy

In August 2018 after being on long term sick for 10 months the chance arose for me to take voluntary redundancy as once again we were going through a restructure, welcome to the NHS!

I still have a lump in my throat now thinking about that decision the decision that was to take the right to work away from me Share on X

I still have a lump in my throat now thinking about that decision the decision that was to take the right to work away from me, the right I had fought for so many years, the friends I had made of not only colleagues but customers too, I accepted I couldn’t go on any longer.

I had spent every day of the previous year feeling guilty for letting my colleagues and my customers down and on the 10th of October 2018 I attended my leaving do with all the senior managers from across the region and it broke my heart.

Realisation

My lightening moment, what was I going to do? was this really the end everything that I had worked for so hard for being taken away by this bloody Illness,

So, in true Rachael style I went back to writing it out and then when the 2019 rugby season started in February that was when Accessible Rach really ramped up because then I had a fire burning inside me that wanted to do the things she always had and I needed to fight, I needed to fight for me and I needed to fight for all disabled people who wanted to attend a rugby league game.

@AccessibleRach was finally giving me a purpose as I started to raise awareness of access in #RugbyLeague, the local paper picked up Share on X

Accessible Rach was finally giving me a purpose as I started to raise awareness of access in rugby league, the local paper picked up on my MS and accessibility, I was starting to get noticed and was invited to join FC Voices which is the fans group for Hull FC.

After making noises in the right places in December 2019 I was an invited guest in the board room at Red Hall of the Rugby Football League talking about accessibility at rugby league.

For the first time in two years, I felt part of something even though at times I struggled to say what I needed to say the people around that table knew what my issues were, didn’t rush me and most importantly really listened to what I said. The outcome from that meeting was a way forward to look at making rugby league accessible for all.

Fast forward to February 2020 having sent my proposals to the RFL I was awaiting their response of how to take this forward while looking forward to being part of the project. I can’t tell you how thrilled I was about this and then March 2020 arrived.

Lockdown

When the world stopped and everything that everybody was doing stopped we were in lockdown unless of course, you’re a key worker, would you believe I was actually envious of this because if I had still been working I would have been a keyworker charging around at breakneck speed trying to put things in place at very short notice, the things I once used to thrive on?

Anyway, I wasn’t key anything so my world would kind of carry on as it had – minus the meetings for a coffee, watching rugby and something that just struck me as I am writing this post on a Sunday going for Sunday lunch, which Mum and I did often.

Who would have thought the last #Game would be a #Drubbing by #WarringtonWolves and our long time coach getting sacked. Share on X

Who would have thought the last game would be a drubbing by Warrington and our long time coach getting sacked.

The Light

I don’t know whether I applied for it I don’t know whether I was asked to do it I actually can’t remember but I attended the first session of a project the MS Society are working on and we were looking at process mapping and the buzz came back in an instant I remembered all the things I was good at and we had a really enjoyable session, we have had four more sessions since and in the last session I remember getting so excited talking about Project managing the installation of a helpdesk in one of my old NHS roles.

When the lockdown ends I now actually believe I still have something to offer if COVID-19 has taught me anything it has taught me that 10 years ago I was working on digitising the NHS, video conferencing, teleconferencing, video consultations and suddenly this is all happening, see they could push the button and make it possible.

Since the Time to Chat calls with the MS Society I’ve been involved with MS Awareness Week, I had an article published in the Yorkshire Post but the biggest part of all of this is I decided to look at my LinkedIn profile having received a couple of job offers for Capital Project Managers, if only eh! but, bearing in mind this is my old life LinkedIn profile and now I felt strong enough to update it with what I am doing now.

Blackboard with I am with the words below Multiple Sclerosis blogger who has been included within the top 50 healthline.com multiple sclerosis blogs, I am in the top 50 multiple sclerosis bloggers at Feedspot.com I am a member of Chronic Illness Bloggers and take part in Linkups, I am a member of HEY Bloggers and a micro volunteer for the RSPCA and Refuge.

What am I?

I am in Multiple Sclerosis blogger who has been included within the top 50 healthline.com multiple sclerosis blogs, I am in the top 50 multiple sclerosis bloggers at Feedspot.com I am a member of Chronic Illness Bloggers and take part in Linkups, I am a member of HEY Bloggers and a micro volunteer for the RSPCA and Refuge.

I am open to different opportunities in the hope that my working life didn’t die in October 2018.

What is refreshing, for me and what I would have struggled with probably a week ago is I have found old connections that I thought I’d lost and gained new Connections that will take me onto the next era whatever that maybe.

When I say from darkness comes light the darkness is covid-19 the light is what my future holds and I am so excited to see what it will bring, it might be a bumpy ride, as it so often is with me, but hold on tight!