Moving Forwards

Photo by Toa Heftiba on Unsplash
How to face your fears and move on

Wednesday of this week for me, was momentous. You will probably think that what I am going to say next is not much to write home about!

I went out in my new power chair. There it is. I can hear the murmurs ‘and?’ ‘so?’ ‘and that was momentous because….’.

Having a power chair after years of depending on other people to be pushed around is a wondrous thing. Having no choice as to where you can go, concern about whether the person pushing is able to manage awkward spaces, being parked while they go down a supermarket aisle or go off to talk to someone, is one of the most frustrating things in a disabled person’s life. It has been my life for the past nine years.

About six months ago (yes six months) I finally got a made to measure power chair. At first I wasn’t allowed to go outside in it. This had to wait for an assessment to see if I was ready.

Eventually, I got the date for the assessment. I was very nervous, I panicked when they put me in a chair that had 5 speeds. My chair only had 3 and I usually pottered around the house at 1! Even more scary was that I had to do everything at speed 5! I won’t bore you with the details except to say it was terrifying! There seemed to be more than the usual amount of old ladies with shopping trolleys and mums with buggies and toddlers – all of which I obviously had to avoid!

I passed. Don’t ask me how I haven’t a clue. Somebody came to my house the next day and altered my speeds to five.

Wednesday was the first big test. My daughter offered to take me to the local golf club for brunch. I was going to a cafe where there was potential to plough into tables and chairs, and basically wreck the place. It took me back to the time when I had a mobility scooter and I knocked over a whole rack of ladies’ underwear in Marks and Spencer’s There were bras and knickers all over the place! Mortifying!

So, I was apprehensive of course, but I knew that if I didn’t do it now I would never do it.

It was fantastic. It will be memorable to me in this journey I’m on. It has given me so much more confidence to go out more. It just goes to show that you must face your fears to move onwards and upwards!

Photo by Sharon McCutcheon on Unsplash

Life with MS – how it can make you feel

Learning to live with feelings and frustrations

Yesterday was extremely unproductive. I was frustrated at the end of the day so I wrote exactly what I was feeling. I have never done this before, not where it might be seen anyway. I didn’t intend to publish it. But then, I thought, why not?

What follows is what I wrote; absolutely no amendments. Please keep reading, the end is positive I promise.

Photo by Kinga Cichewicz on Unsplash


I can’t be bothered to do anything today. Not even to play games or listen to my book. I’m cold and I’m tired and I just want to go to bed. This is how it is sometimes. MS can bring you down just like that. I made a reasonable effort at reading and a bit of writing this morning but this afternoon is useless. I’m counting down the time to bedtime.

I hate these days. This has been coming on for a while. All last week I was struggling. Now the clocks have gone back and it’s darker earlier, even more depressing.

This makes me anxious. I worry that I’m not going to be able to snap out of it this time. I’ve done it countless times before, dragged myself up again into the light. But each time, it gets harder and I get more and more worried that I won’t surface.

I’m going to get a my hair cut on Thursday. Sometimes going out can make me feel better and lift me out of this. But I know that deep down I’m really anxious about leaving the house.

It’s hard for people around me to understand. Because I’m always smiling, always cheerful (so they tell me) they don’t like it if they think I’m sinking because it worries them.

I don’t like it much either. It is soul-destroying. These are the days when all I can think about is what I lost when this horrible disease got hold of me. I don’t like the feelings that overwhelm me.

Everything I was and everything I had before has gone. I have no privacy, no dignity, no freedom and worst of all, absolutely no choice. I cannot choose to get up in the morning when I please, or take a shower or simply get some breakfast. I cannot curl up on the sofa with a hot chocolate and a good book.

The thing that makes me sad: I cannot pick up my grandchildren, swing them round and cuddle them. It breaks my heart when my daughters struggle with childcare and I can’t help.

The worst thing, I can no longer sleep in the same bed as my husband, put my arms round him and give him a hug or even sit at the table with him to eat.

We cannot go out in the evening to the cinema, or for a meal or any of the things other people take for granted. He is my full time carer and although I am only 65, at 86 he finds it very tiring, and at times frustrating. I should be the one looking after him.

So this is where I am today. Tomorrow could be completely different. I never know.

Depressing isn’t it? And yet today I feel fine. I’ve read some useful articles this morning, carried out some research online. And now I’m writing. This is life with MS. The feelings it can swamp you with and the tiresome frustrations of it.

So you see, sometimes it’s just how it is when you’re living life with MS.

Photo by Firman Kholik on Unsplash

Why should it be so difficult………?

In June, this year, my husband and I took our usual flight from Heathrow to Toulouse in France home to our house where we lived for 10 years. Since we returned to the UK three years ago we can only manage to get there for just six weeks a year.

This is because of my disability. Or, actually it’s not! It’s because it is so difficult and stressful to take the flight.

We used to drive down back in the day when we were both fit and healthy, sometimes staying somewhere on the way down. We would stay for six months and then go home for six months.

So, we moved, lock, stock and barrel. I got into the health and social security system, and we got help. At the time I could still walk with a Zimmer frame. As my condition worsened the amount of care I needed increased and it happened!

But now we had to fly home if we wanted to see our family. And so it began. A catalogue of errors and mishaps and downright inefficiency and incompetence. Flying from the UK and back after our visit this summer was the pinnacle of all these things.

Photo by Annie Theby on Unsplash

When I was no longer able to drive, but was still just about walking, we could fly Ryan Air. Easy peasy! When I could no longer manage the stairs at home and the farce of attempting to get a diagnosis (a story for another day!) we decided to move there permanently. Our house is an old farmhouse with no stairs.

Flying out from Heathrow in June, despite asking the Assistance Team four times not to take the legs off my wheelchair to transfer me to a boarding chair (you can’t take your chair on to the plane), they did it anyway. Somewhat inevitably, they were subsequently lost.

The return journey was even worse. To cut a very long story short; flight cancelled, rebooked for the next day, disability arrangements not carried forward, upshot – no Assistance Team at the airport! Assistance was provided – by four young women in BA staff uniforms. They decided to stand me up on my completely useless legs despite me telling them what would happen. Result; I collapsed painfully, they panicked, threw me back towards my chair which I only just reached and I ended up in an extremely painful and undignified position. They called the Fire Brigade!

The one good thing was we were upgraded to business class! During all this I lost a front tooth. Back in the UK I had to have emergency dental treatment privately ( no NHS dentist could give me an urgent appointment) which cost me £745!

I decided to make a claim for compensation from the airline. After all, they had reimbursed me for the cost of the new wheelchair legs I had to buy.

They disputed the claim denying any liability. Now, strictly speaking, British Airways do not provide the disability assistance themselves. It is provided by another company. However, on this occasion they did, as they were left with little choice. They are refusing to compensate me for my dental treatment, saying that the airport provided assistance (in my view totally inadequate) therefore they cannot be held responsible, notwithstanding the fact that the Senior crew member told me to make a claim.

I need to make something clear. It’s not money that motivates me. It is the sheer inability of companies who advertise a service to understand the need for understanding and empathy when dealing with the diverse needs of people with disabilities. But, more than that, they need to listen. I have made this point over and over again to BA, on forums, anywhere I can. The CEO of Disability Rights UK ( has written to his BA counterpart suggesting ways in which they can improve their service.

Yet, everyday on Twitter I see complaints about BA, RyanAir, and Easy Jet and their disability assistance.

I don’t know what it will take for them to wake up and smell the coffee, but I know I’m going to keep on trying.

Photo by Yassine Khalfalli on Unsplash


What a title – ‘reflections’?  Not exactly a draw-you-in type title is it? I’m useless at thinking  up titles anyway. Perhaps I should write first and title afterwards.  The thing is I wrote it because it was just what I was doing – reflecting.  Being confined to a wheelchair there is plenty of time to do it.  This morning we have sunshine at last so I can sit here in the kitchen with my coffee with the doors open and look out at my lovely garden (courtesy of the lady who lived here before us, none of our doing!). At the top of the hill in front of me is the local cemetery.  I can see a stone cross and various headstones. When we first moved here it spooked me, but now I regard it as a peaceful place. I have been persuaded by lots of my friends that that is what it is. So I’ve come round to the idea.

My main thought this morning is I’m so glad I’m alive. Three years ago I was brought back from the brink of death by a fantastic group of doctors and nurses to whom I owe a debt of gratitude that is priceless beyond words.  Since then I’ve valued every second.  And I intend to go on as long as I can before I take the walk up the hill in front of me.

At the same time though, I know that there are many people in this world

who do not have the opportunity to sit and reflect as I have done this morning. I’m aware of how much of a luxury it is.  I don’t feel guilty when I see a homeless person sleeping on a bench in my local town centre, that would be pointless.  What I do feel is just terribly inexorably sad.  I just want to give him a big hug.  But that would not help to get him off the street.

Is it alright not to feel guilty? It’s not my fault,  I think.  It may not be their fault either but a result of a chain of circumstances.  If it’s a systemic failure, which is my preferred option, then how can I, we, as individuals really contribute to solving this crisis.  I know this is endlessly debated, and many individuals do give their time and effort to try to change things.  I’m not saying anything new, only what came into my mind when I was ‘reflecting’.


The Journey Continues

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

Source unknown

I’ve been trying to get this blog going for ages.   I keep a journal where I have been trying out all the things I might write about on here.  The main thing is that I don’t want this to be a depressing place that people don’t want to visit. I’ve blogged before some years ago but that was very lighthearted stuff, and I deliberately kept my MS out of it, I didn’t want to be defined by it.  Things have changed since then. The MS has progressed sure, but many other things have changed too, not only in my life but in the country, in the world.  So, I have to write about my life with MS but I also want to write about daily life in other respects as well. There are many things on which I have opinions and would like to share them, hopefully to provoke discussion and debate but also to raise awareness of issues that many people don’t know about.

This all sounds very deep, I don’t mean it to.  I just want to give a heads up on what’s coming!  Be ready 😄😄

just one more thing, I won’t be writing everyday, sometimes it will be totally beyond me!