Before I hit the big 40 I had so many dreams but my biggest dream was that I wanted to have married my soul mate and to live happily with our beautiful perfect daughter, we would have a nice home , lots of friends, weekends away and My Dream Car would be parked in the driveway. I don’t know what it is about the shape and the sound of the Porsche 911 GT that just sends me to another place in the world. I achieved almost everything but even now I can still picture in my head, just me and my beautiful car driving down a long winding road surrounded by hills, a place with the sun out yet no traffic, a place where I could put my foot down. Just me my car and the road in front of me with nowhere to be , no time to be there , just driving because I want to. Unfortunately, ME put an end to that and any other dream that I had.
I’m going to be direct and straight to the point, I am asking you for help. Helping doesn’t just mean a donation as you can help me by sharing my story or sending it to someone you think could help. I have to believe that out there in the world someone will feel a real connection with my story and hear my plea. All help is so greatly received and greatly appreciated.
I just can’t live my life like this anymore. If I had any other way of making this happen I would, to go from earning my own salary with all my independence to depending on others for everything has been especially tough but I am trying. With the help of my daughter, we have started designing clothes, mugs, phone cases and so much more to help raise awareness of Myalgic Encephalomyelitis, every item that is sold will allow me to start giving back to ME sufferers in my area, I hope that one day I will be able to give back on a much larger scale. I hope that one day this will give Becks a future, one day it will be her own business allowing me to continue raising awareness and helping others.
Old chair v new chair
Please read this . I was lucky enough to have been given a motorised wheelchair but to go anywhere I really do need a Wheelchair Accessible Vehicle. My new wheelchair is too large to fit into a normal car and it cant be folded or made smaller in any way. This new chair is amazing as it gives me everything I want, my independence back. It allows me to decide where I want to go all that at just the push of the joystick, it has a place to hold my head and so many amazing features like a tilting seat so if one position hurts or causes me pain I can adjust the tilt, adjusting the tilt puts me in a different position which takes away the pain from sitting that way for too long. I can also raise the seat to fit at a table or a work surface or pay at a till that has a high cash desk which is a pet peeve of mine.
As I am not strong enough to use a self-propelled chair my old option was to have a chair that had to be pushed. Being pushed about in my old chair by my 21-year-old child breaks my heart and to go anywhere in that old chair with my husband pushing me really makes me feel less of a woman, less of a wife, less of me.
All I want is my independence back, I want to be able to look around a shop on my own and don’t start me on Christmas or birthdays, do you have any idea how hard it is to buy a surprise in a shop when the person pushing you is the recipient!
Myalgic Encephalomyelitis
In December 2012 I was diagnosed with Myalgic Encephalomyelitis back then I was still working full time and doing all I could to fight against the illness. Every day I was drinking so much caffeine plus on top of that, I was taking pro plus tablets as well as energy drinks just to get me through the day at work. I know now that this was the worst thing I could have done.
If you are reading this and you suspect you have ME please rest and listen to your body.
I am now completely bedridden and reliant on my Husband and Daughter to care for me. Myalgic Encephalomyelitis has destroyed my life, my Daughters life and my Husband’s life. This was never the plan for our family as I loved working hard and spending time with Our Daughter at the weekend, we loved our trips into town for a full day of shopping. We would start in a coffee shop which always meant a chocolate muffin for Becks then I would treat her to something from the Disney Shop or Build a Bear, just watching her smile from the moment she left the house and watching that little smile get bigger as the day went on meant everything to me.
Back then we had a large group of friends and family members who we would see regularly for meals out or drinking, somehow this always ended in drinking followed by recovering on the couch for the rest of the weekend. It was after a big night out that I first noticed something was really off, I felt so much worse than a normal hangover, I couldn’t do anything, every single movement was a real effort, my head felt like it was spinning and when I stood it got so much worse. However when I started being sick I knew something was really wrong, the sick was black and no matter how many times I was sick it didn’t change, I knew I had nothing left in my body to bring up, it felt like my body was poisoned, my body was trying to rid it of whatever it was.
The pain and sickness at first felt like bad luck, I was getting laryngitis all of the time with lots of pain in the area of my hips at the time I put it down to doing so much. It had been a hectic few years, In 2005 I started planning our wedding in Rome, I was doing everything myself, from writing out all the invitations, planning the wedding breakfast menu as week as doubling everything as we had a church blessing planned for when we got back home. It was also around this time that I lost a very close Uncle which hit me hard, add to that working full time and trying to reduce my weight as well as tone up the shape that I already had. My days were manic from getting a 5-year-old up , getting her and my family ready to leave the house so we could take Becks to school then do a full day at work, after work I would hit the gym for an hour before going home to cook our tea and spend time with our the little girl before putting her to bed.
We felt so lucky as we had lots of our family flying out to Rome with us for the wedding then having my Nan able to attend the blessing for the week after, it was amazing being able to celebrate in Rome then celebrate with our friends and family who were unable to travel to Rome with us all attending the blessing the week after
Not long after getting back from our wedding, I found a new home that I fell in love with, it was perfect as it was also over the road from my Mother In Law at the time my Father in Law was ill so being close to her was a huge selling point for us.
Life
It really was none stop over those few years add to that grief, worry and uncertainty plus of course our normal life problems, busy days, work stress. The year after we also had my sisters wedding to attend in Florida. With my Father in Law still being so ill it meant that we were constantly on the phone to My Mother in Law for updates. That truly was a horrible time for us but I couldn’t have missed my Sisters wedding and let Our Daughter miss out on something so big. Of course, Florida meant a trip of a lifetime to Disney on top of that she was a Bridesmaid. It was a holiday with all of our closest family members. all of her cousins being together for the wedding, I couldn’t have let her miss out on that.
I just thought that with so much going on, the stress, the grief and so many life changes around that time that I was overtired. While we can’t see what grief takes out of us I know from experience that it takes so much.
My pain was getting worse it was now so bad that it felt like my hips would break and I was so tired, tiredness that I couldn’t shake, I didn’t feel like was just tired it felt so much more. No matter how much I rested I never felt normal, I was taking energy drinks as well as caffeine tablets at work just to get through the day. At home, I had gone from the one who did everything to not being able to do anything.
My hip /pelvic pain turned out to be Endometriosis which due to the severity my Consultant put me through medical menopause, this meant monthly injections into my stomach and pain killers to help me manage my pain levels.
Not long after my Endometriosis diagnosis, I was diagnosed with Myalgic Encephalomyelitis. As my pain was so severe topped with how little I could now do The ME Team could do very little for me so my care was now back in the hands of my GP. All my GP and The ME team could do was to provide me with assistance at home which included a wheelchair, handles around my bathroom plus a toilet surround, an extra bannister to help me get up and down the stairs. My pain was now so severe that I was needing emergency medical care, it was so bad that one of the emergency Drs wrote to my own GP telling him that I needed to be taking the strongest pain medication as when my pain spiked it was too high to get under control.
My health got so bad that I was unable to work, from there my life became a smaller and smaller place. See no one wants to suggest meeting up or inviting you to an event when you haven’t been to any other. Now my life is a circle of ME Friends plus my dog. It’s a very lonely place to be.
To my family I miss you all desperately
It really breaks my heart to not hear from the friends or family members who at the beginning vowed to be there for me, now I get nothing and its horrible.
I know that I will be lucky if maybe one or two out of all of my friends and family will even bother to read this.
When Covid hit I hoped the one positive would be that people would understand how hard it is for others in the world. I hoped that maybe people would understand how hard it is to stare at four walls day after day. For me, my normality is now one of loneliness, lockdown for me and millions of others will never stop.
I really did think when I got my new chair that I would be able to get out of the house and just have a little of the life that I once knew. Unfortunately when I found out that my chair won’t fit in my car I just wanted to cry.
See I have dreams, I have so much that I still want to do in life. I had dreams of packing up the car like we used to and spending a weekend camping in the lakes. Only this time it would be different as I would be able to get about, driving to a place only to sit in the car while others go into a shop or having to drive to the shower on a campsite as you just don’t have the strength to walk is hard. A ford focus packed up with a tent, all your camping gear, clothes and food for the weekend plus a Labrador doesn’t leave enough space for another coat let alone a wheelchair.
I have missed out on so much, the last time I went out with my Husband was four years ago maybe and that’s my Husband. I have missed so many babies being born so many funerals, birthdays, nights out. I haven’t even seen the places that my Daughter has been living in while at University and as she is now in her third year of Uni that means she graduates next year, right now without a wheelchair accessible vehicle I may even have to miss that.
Ford Tourneo Grand Connect
I hoped if I show you all more about the car I need it may help people understand why it is so important for me to reach my target. The car I would love to get is a Ford Tourneo Grand Connect 5 seat automatic wheelchair accessible vehicle. While this is a newer model I’m absolutely fine with one a few years old just as long as it has low mileage.
I spent so long looking into wheelchair accessible vehicles and dreaming of the life that could be mine. Wheelchair acceisble vehicles come in lots of shapes and sizes, some are smaller than others , some have 3 seats and some even allow you to drive from your wheelchair.
I narrowed my choice down to 2 the Ford or the Volkswagen, I needed my car to be automatic and I need 2 front seats plus 3 rear seats as I take my fur baby with me everywhere I go. The choice of car is a million miles away from the car I wanted to be driving in my forties but this car isn’t a dream car it’s so much more than that. To be able to leave my home sat in my new wheelchair without help is huge, being able to go up the ramp into my wheelchair accessible vehicle would give me some life back , it would be a very different life but it would be giving me my life back.
It’s no Porsche but for me it is freedom, for me it’s being able to go out to a shop or to the cinema, for me its being able to take Alfie down to Crosby beach for a walk in the brisk autumn air. A wheelchair accesible vehicle gives me hope again, the start of a new life, it’s being able to have just a little of my independence back. It’s being able to get away for a weekend or longer when Becks has holidays from Uni.
This car for me gives me back my life, a new life with new beginnings and all sorts of possibilities. So please I ask each of you to help in any way you can and I understand that not everyone has the cash to spare right now but you can still help me by sharing this, please.
Below I have linked the car shown above in the hope that someone wants to go over my target to allow me to buy a newer model. If anyone wants to add the Porsche too then who am I to refuse x
Please help me every single penny donated help change my world.
Thank you 🥰