One Year with the Alber E-Fix

Today marks 1 Year with my Alber E-Fix. I cannot believe it has been a whole year. I feel like I have done so much thanks to the E-Fix in not much time at all. On the other hand, I feel like I’ve have the E-Fix forever. I feel like I know the E-Fix, what it can and can’t do and how to manoeuvre it.

Surprisingly it didn’t take me long to get the hang of using it, although James may disagree; he refused to wear anything but steal toe capped shoes for the first 3 months…

I owe so much to the E-Fix and to those of you that donated or shared my fundraising page. In the last year because of the E-Fix, because of you, I’ve had the opportunity to live rather than just existDon’t get me wrong this last year has had many challenges but none of these take away from the independence the E-Fix has given me.

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I don’t want to focus on the negatives in this post and although I am all about sharing the reality of chronic life I’m going to say screw it! Because I just want to tell you about all the fabulous things I got to do in the last year thanks to you and the E-Fix.

A quick recap before I get started… In December 2017 James and I launched my E-Fix fundraising page. The support I had was immense and unimaginable. I was petrified of fundraising but I was desperate for independence and my life back. We raised, you raised nearly half of the £4,775 we needed within a month. Once we reached just over half way I placed the order for my E-Fix.

On Tuesday 13thMarch 2018 I received a large donation which meant there was only about £80 left to raise. This was the final “push” and in the same day the full £4,775 was raised! I was out for dinner at the time and I could not stop smiling!

On the 23rdMarch 2018 James and I headed to EPC Farnborough where I had also brought my wheelchair to collect my E-Fix. We waited in the showroom whilst they fitted the E-Fix to my chair and it was one of the longest waits of my life. It was a confusing combination of excited, grateful and nervousness!

The only word I think I can use to describe the feeling though as I wheeled myself out of EPC with the E-Fix is ECSTATIC!

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My wheelchair before the Alber E-Fix was added.
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My wheelchair after my Alber E-Fix was added.

I felt so free, so independent and I was so eager to go somewhere, to do something so… we went to a Co-op…

We were actually off to visit my Aunt and then we were heading back to Cardiff so I wouldn’t of had a proper chance to test the E-Fix. However, I cannot explain to you the independence, how different, how amazing and how much easier it was to be able to take myself around the shop than have someone push me. There were no disagreements (arguments) over what I could see from my chair. I didn’t get neck ache from being too close to the shelves and I could actually browse without feeling like a burden!

That was probably the biggest weight off my shoulders when I got my E-Fix; I didn’t feel as much of a burden on other people as I did before. I was able to be independent, I didn’t have to rely on others. I wasn’t constantly worrying about whether they were resentful or if I was taking up too much of someone else’s time. I didn’t have to worry about wanting to go up and down the isles to browse and that felt unbelievably good.

James and I moved to Cardiff a few weeks before we picked up my E-Fix which meant for the first few weeks I couldn’t go anywhere without James or our friend Tom. However, receiving my E-Fix meant I could actually venture out into Cardiff and it felt amazing! I know I said I wanted to focus on the good and I do but I won’t lie my mental health was struggling before our move to Cardiff. 2017 had been a rough year and not being able to get out independently really didn’t help. Although I do believe that my mental health would have benefited had I of had the E-Fix when I lived in Newbury the move to Cardiff also helped that much more. There is just so much more to do here and Cardiff, Wales is such a beautiful place.

 

The first thing I did independently with the E-Fix was head down to Cardiff Bay. I absolutely love the bay! I love being beside the water and I find it such a calming place to be, even when it can be very busy. I had a wonder around, I went for a nosey in a few shops, I brought some Welsh Cakes – I highly recommend Fabulous in Cardiff Bay especially the fresh ones or the cinnamon ones! I then sat beside the water and had some lunch. It felt amazing just to breathe in some fresh air as and when I wanted to. It felt so good to head down to the bay in an afternoon when I felt up to it rather than going late in the evening with James because he works during the day.

Sometimes I just need to get out of the house, breathe in the fresh, cold air. However, before the E-Fix the most I got during the week would be between getting in and out of the car on our way to the supermarket. The E-Fix gives me the independence to get air when I need it. It’s hard to understand if you don’t live with a condition that can leave you stuck inside the difference a bit of fresh air can make. There are some really beautiful places to visit around Cardiff whether you just want to sit still, have a ten-minute walk or a one hour walk. There’s the Bay, Roath Park, Bute Park, Penarth Pier, if you want to head a little further out there’s Barry or if you’re feeling adventurous the Brecon’s. These are just some of the places I like to go there’s many more I haven’t even visited yet!

James and I try to go on a walk at the weekends and it feels so good to be able to walk beside him now, to hold a conversation and his hand. These are simple pleasures that everyone takes for granted however, they were things I was frequently missing out on. Being able to walk beside James, my friends, my family has bought me so much happiness. I can actually be involved in conversations, I don’t miss out on what’s going on, I don’t ask questions that have already been answered and I don’t feel so lonely. Being able to hold James’ hand doesn’t sound like the be all and end all but not being able to do so left me feeling like a failure in my status as a girlfriend because it just felt like something else I couldn’t do.

It is no secret that my health care whilst living in Newbury was rather poor and knowing we were about to move to Cardiff I kind of gave up on my health care. It was also extremely difficult for me to get to the GP surgery as I needed someone to take me. If I really had to go to start with I’d try but to get to the ramp the car park was on a very steep hill, the ramp itself was ridiculously long winded and I struggled far too much and eventually it wasn’t worth it for the results I was getting. Since moving though I have been able to go to the GP’s anytime I need to. If I need to seek medical attention I can. Everyone should be able to easily seek medical attention but sadly it is often not the case. My first independent trip the the GP felt like such a milestone in my independence and it was a step in the right direction in making sure I was taking care of myself. This is the same for my hospital appointments. Although James comes to most of them I don’t need him at every single one.

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Having the E-Fix isn’t all about having independence when I am alone i.e. when James is at work or away it’s about having independence at all times. It doesn’t matter if I am on my own or with twenty people, I want to be independent. I want to decide what I can see, what pace I am moving at, to have the ability to turn myself around as I wish. I don’t spend as much of my time telling people that I don’t mind missing out (despite the fact I do) just because I don’t want to feel a burden or because I just can’t handle someone else being in charge of my every move.

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Being able to just wonder off to look at something when shopping is awesome. I know that James definitely enjoys the fact that he doesn’t have to take me around clothes shops when I am looking for something new. Secretly (it’s not really a secret but) so do I! My first independent shopping trip was so freeing. I could move at my own pace and I could make sure that I had searched every inch of that shop before I left. If I happen to be out and we need something I can actually pick it up which still feels like such a new alien feeling. I have the ability to text James and ask if we remembered to take dinner out of the freezer and if not I could actually pick something up to save James the job. Around birthday’s and Christmas, I don’t have to do all my shopping online anymore! Although Christmas as a wheelchair user can be… interesting to say the least.

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My first independent clothes shopping trip since the end of 2016 – April 2018

We now live around two hours from the majority of our family and friends. Once I had the E-Fix I could actually go and visit them without always needing James to come with me as it’s not always possible or necessary. I was able to go back for Mothers Day last year which I wouldn’t have been able to do otherwise and would have left me feeling very guilty. I like to get out of the car for a break and it means once I reach my destination I don’t have to rely on other people. For the first time in over a year last year I was able to go and visit my best friend in Bristol and go further than her house as she wasn’t able to push my wheelchair so we were always stuck inside and although it’s lovely being able to spend time with both her and James sometimes we just need some good old girl chat, to shop and go out for lunch.

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In the last year thanks to the E-Fix I have not only been able to go shopping, go on ‘walks’, visit my family but I have been able to enjoy spending time with my friends, go to new places, explore Cardiff. James and I went to watch Wicked in London early last year, we went to the Marco Pierre White Steakhouse which I had arranged for James Christmas present the following year and I had my first experience of the London Eye.

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I’ve been able to enjoy time spent with Eleanor when I’ve visited her or she’s come to visit us. Whilst living in Newbury Eleanor was a huge support in helping me get outside of the house for our catch ups. It has been so great to not need her to push my chair now. Although she did drag it across a beach for me back in the summer. We had a lovely two days in Barry sunbathing, eating ice cream, catching up and floating around in the sea. In fact it is Eleanor who since April has taken a large majority of the photos you’ve seen of me in my chair so a mini shout out to Eleanor for that!

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Cardiff Bay & Bute Park April 2018
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August 2018

James and I had an incredible summer. Most people have their best summers somewhere between GCSE’s and A-Levels. Those years I either spent working or in hospital. However, summer 2018 was such an amazing few months. James, Tom and I had the opportunity to see Stereophonics Live, supported by Jake Bugg. We celebrated James’ birthday with friends,  James and I bought a caravan. Which we had a few one night stays in and then a week in Cornwall June/July time, right when the heat wave kicked in.

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Cornwall was beautiful! We did so much, we spent a lot of time at the beach and thanks to the slightly wet, compacted sand the majority of the time my chair was able to make it across the beaches. We visited Worlds End, St.Ives and more. There were rather a lot of hills in Cornwall which truly put the E-Fix to the test however, for the most part it succeeded and I was able to enjoyed my holiday rather than feel guilty and frustrated by the fact I was being pushed around.

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Cornwall June/July 2018

Our campsite had a hill to get up to the toilets and I think both James and I appreciated the fact that I didn’t need him to push me up the hill to the toilets every time I needed to go. There was also a table tennis table opposite from our caravan in which we thoroughly enjoyed using.

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We laughed so much that week, we had a lot of fun and got to switch off from a lot before returning to the chaos. My health still demanded a lot of attention but there was no frustration or guilt from either side about how easily I could get about. I am so grateful that I not only had a fantastic holiday but I also got to take that away with me too, I only took away the good bits because really there was only good and the E-Fix is the reason for that.

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Cornwall June/July 2018

November we celebrated my 21st birthday and James had booked us a session at the Christmas outdoor Ice Rink! Yes, most ice rinks allow wheelchairs! I used to love going ice skating, I didn’t do it very often but I loved it but I haven’t been able to ice skate in about three years and even then it was difficult. However, with the E-Fix it was a lot of fun! James enjoyed it too mainly as he used me as a child would use one of the penguins. He held onto my chair and I pulled him around, it was a lot of fun. The next day we headed to the McArthur Glen Designer Outlet for a little shopping too.

December was a busy month back a forth between Cardiff and Newbury but we spent Christmas in Newbury spending time with our friends and both of our families. James and I also went on a lovely walk in Basingstoke, the Vyne – he thinks. The last time I got to do a woodland style walk I had to hire a Tramper (a large mobility scooter made for the outdoors) but the E-Fix coped really well!  There were quite a few rather muddy patches, some I could just avoid along with tree roots, going backwards over quite a few worked well or tipping myself back slightly in a wheelie sort of fashion. I think around three times I had to stand up so James could lift my chair but to be honest I was grateful for the stretch!

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The last year has been such an amazing year with so much excitement, it has also been an extremely tough year but the E-Fix has made life 100% better. I can’t believe that I very nearly didn’t go through with fundraising because I wouldn’t have had the twelve months I did otherwise.

I still find it so difficult to comprehend the kindness and generosity of my family, friends and people I’ve never met; thanks to your donations and social media support for the E-Fix on the 23rdMarch 2018 I started to live than just exist. This last year holds so many memories and happy moments almost all of which include the E-Fix and I could not be more grateful.

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I owe you all so much, I could have never imagined the kind of difference the E-Fix has made to my lifeand I am so grateful for it!

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I really hope this post allows you all to see the incredible difference you made to my life and I hope this helps to spread awareness for how necessary the right equipment and independence is for disabled people.

Soon, I hope to write a little more of a ‘review’ style post on the E-Fix for anyone who may be looking into purchasing one however, if you have any questions please do let me know!

If you are considering fundraising I would highly recommend it. It is an extremely difficult decision to make but I don’t know what I would have done in the last year without my E-Fix.

Hopefully within the next week I will also have a car that meets my needs thanks to the Motability Scheme (more on that soon!). I just need to remember because I have the ability to go out whenever I’d like (within reason) my  pain and fatigue do often disagree.

Thank you again to everyone who helped us reach my goal for independence!

Holly

 

 

 

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