Hello!

Let me first do a little introduction into my life! I’m guessing everyone knows most of this anyway but I’ll just cover things briefly in case someone new happens to stumble across this.

I tried really hard to just jump into the first topic but as I was typing I realised that everything related back to stuff in the past – stuff that weren’t being explained – so I thought I’d do a quick (albeit not very quick! Oops!) overview first. So a lot of this will just touch on subjects that I will discuss in more depth in later blogs.

I’m 27 and have Cerebral Palsy (CP). It is a disability that I have had since I was born. CP affects everyone differently. For example I have a twin sister who also has CP but is slightly less affected than I am.

For me it affects all four limbs pretty severely, although I’m very aware that it could be a lot worse and I’m grateful for the ability I do have! It only affects me physically and does not affect my ability to learn, understand, interact with people or anything like that. It only affects my muscles. All my muscles are tight and weak so I don’t have the ability to stand or walk and do not have full use of my arms, hands or full use of any of my other muscles for that matter. I use an electric wheelchair to get around as well as a hoist to be moved from chair to bed/toilet and all that jazz! I rely on carers quite heavily for all the physical stuff in life!

My speech is very slightly affected too. I guess thats down to weak vocal cords? Who knows lol and I guess also it’s affected because I can’t quite take in the same amount of air when I breathe in as an able bodied person would. But I’m pretty easy to understand – just don’t sound quite like your average joe!

I love music, love sunshine, love being busy and love Jane McDonald more than life itself!! That fact alone always intrigues people lol so I’ll definitely do a blog in the future about how Jane has changed my life! (Yes, she really has!!)

Anyway, rewinding to growing up, my parents did an awesome job of looking after us. Looking back it was a huge amount of work and must have caused them both, especially my Mum who stayed at home to look after us while my Dad worked, a lot of stress. And I know my Dad found it hard too.

I struggle a lot with guilt thinking about just how much of their lives my parents had to give up in order to take care of us and what I put them through – I used to be very angry child/teenager and would regularly have screaming meltdowns and my parents would have to bear the brunt. But I think I’ll save the discussions of anger and guilt for another Blog. I’ll just add here that these feelings were in no way placed on me by anyone else, other than myself. I couldn’t ask for more selfless, giving parents right from when we were born through to now. All in all, I had a pretty idyllic childhood, which I’m sure will be the subject of its own blog somewhere along the way!

When I was little I went to a mainstream primary school where I found it pretty difficult to settle. I think it was hard for both us and the school that me and my sister were the only pupils with disabilities there, but it wasn’t too bad and I don’t have anything really significant to talk about during that period!

For secondary school I went to a school which was mainstream but that had a “unit” for students with disabilities. That didn’t mean we were always in the unit or had our lessons in there, it just meant we could go there when we needed extra support. So we went there when the others did P.E. and got help to catch on anything we might have fallen behind on in class (I write and type a lot slower than the average person).

We also could go to the unit at break times if we chose to. I often did to escape having to constantly dodge out the way of all the others running around – if I didn’t move out the way in time I would invariably end up with someone running into my my chair and they would end up on my lap! Some people would view this as a positive situation to be in lol! but I mostly didn’t!! Haha. So the unit provided a welcome break from that. Because there were 5 other people in our unit with physical disabilities, including my sister, I quickly made friends.

I loved it in the unit and I think this was the first time I truly felt accepted in a friendship group, other than the neighbors we grew up with. But secondary school was the first time I really had the opportunity to make friends with other disabled people. It was refreshing to have that common ground with people. That being said, when it came to making the decision about which college to go to and I found out about Hereward, the decision couldn’t have been easier.

Hereward is a specialist college for disabled people and at the time I went, the majority of students there had physical disabilities. It was a no brainier for me as I knew I was definitely at my most comfortable amongst other disabled people.

Enrolling at was literally the best thing I have ever done. I’m not going to say too much about it here, there’s too much to discuss so I’ll leave the most part to a future blog. But just very briefly. For my first two years there I travelled daily to and from the college and completed two A Levels: business and I.T. I made lots of new friends and, on the whole, loved this period of time there.

Hereward also offered residential places for students to live in the college while they studied and because I was having such a good time there, my Mum suggested we look into me going there residentially during term time. At first I thought it was a terrible idea!

Other than a few nights a month at a respite place to give her a break (and it was only, at most, two nights in a row at any one time), I had never really had any experience of being away from my Mum (or Dad) for any long periods of time. I didn’t enjoy being apart from her and the thought of living apart from her made me sick and filled me with dread.

Over the next few weeks I thought about my Mum’s suggestion a lot and started to think differently. I knew that I couldn’t live with her forever, so now seemed as good a time as any. With the decision made and funding granted, I started my 3rd year at Hereward as a residential student.

I already had a few friends who were residential, but as weird as it sounds, residential and “day students” seemed to naturally separate into those two groups. So when I moved into the accommodation there were lots of new friends to be made. Just like before though, I felt comfortable with everyone because it felt like we were all in the same boat due to our disabilities and I made so many friends for life there. We are all still in touch now and I could never be without them. As I’ve said I will discuss this further in a future blog.

I just want to make very important point here – just because I’m saying I’m most comfortable around disabled people, doesn’t mean to say I haven’t go on to make some able bodied friends that mean the absolute world to me too, and they are some of my closest friends in the world (you know who you are!!).

But it was when I was living at Hereward that I learned who I was and became confident with who that was. And that was all thanks to my new found friends and the amazing staff working on the residential “blocks”.

When I first moved in, I was so shy but people seemed to like who I was and so, slowly, I started coming out of my shell. The staff there showed me it didn’t have to be a bad thing having someone other than your parents caring for you. I bonded with the staff and they became like friends and second Mums!

Saying that though, I still wanted to go home every weekend to see my Mum! I missed her a lot. And my Dad of course! So every Friday my parents used to come and collect me and my sister and we were both always excited for the weekend at home! Most weeks, although I absolutely loved it there, in the back of my mind, I was counting down to when I got to go home. That was until I met a boy!! Lol.

Ali definitely deserves his own blog so for now I will just say he completely changed my life and made my dreams come true. I never in a million years thought someone like me would meet someone as beautiful, funny, caring and all the other words you can think of!! Honestly, I am seriously punching above my weight!! Lol.

Once I met Ali, I never wanted to go home! (No offence Mum!! Lol). I stayed at the college to be with Ali most weekends. I never wanted to be apart from him. We had the time of our life! We were always laughing and always going out and drinking far too much! Lol. Half terms came around all too quickly and I used to cry at the thought of being without him for a week or two while college was closed for the holidays. I always enjoyed my time at home but couldn’t wait to get back to him.

I still couldn’t believe I’d met someone who made me feel like he did. We had about a year and a half after we officially got together until it was time for Ali to leave the college for good. He started a couple of years before me and you only got so many years before the funding ran out and you had to leave.

I should say here it wasn’t completely plain sailing with Ali at college. It was my first serious relationship and it was a lot to deal with, being so in love yet neither of us having the physical ability needed to have the privacy to do what we wanted to do together. For example, we obviously had/have to rely on others to do something as simple as lying us in the same bed together.

I was so shy and found someone else’s involvement quite embarrassing. Although the staff at college and our carers now at home always did/do their best to make me feel as comfortable as possible. (Obviously we go to bed together every night now we live together so I don’t really feel embarrassed about that now but even now I still feel a bit embarrassed if a carer has to do something like push him closer if I can’t reach him for a cuddle. But the embarrassment issue is no one else’s fault other than mine and I’m working on it lol).

Anyway, I was completely heartbroken when he had to leave college. But we promised each other it wasn’t going to be the end of us. Mind you, I worried in the back of my mind that things between us would never be the same again.

It was time for my final year at Hereward. It wasn’t the same without Ali. I missed him so much. But one positive thing to come out of that year was that I was able to re-cement the bond between me and my friends.

While Ali had been there, I had been so preoccupied with him that, looking back, I neglected my friends a bit more than I should have. That’s not to say I regret spending all my time with Ali because I definitely don’t. I believe that time together gave us really strong foundations for our relationship.

However, it was in that year at college that I decided it was time to concentrate on my friends again – at least that way I’d have something to distract me from being miserable without Ali! However by this time my friends and the staff had accompanied me on train journeys to London (where Ali lived) and after a couple of trips, I felt confident to go on my own, so I spent time with him at least two times a month.

When the time came to leave Hereward, I was literally devastated. I really believed I would never be happy like that. Even now, sometimes I believe that statement to be true. That’s not to say I’m miserable now, I’m definitely not! But it’s just that Hereward provided such a unique happiness, with so many friends under one roof, I feel it really did bring out the best in all of us.

Then came the time for uni! Well that was a shock to the system! I will definitely talk more on this later but going from a place where I felt fully accepted and able to be myself; from a place where all our quirks were normal such as moving our feet by driving them (slowly!) into corners of wall or furniture in order to get more comfortable; from a place where you could go to a lesson with a heat pad shoved up your jumper in various places because whichever muscle it was today had decided to go into spasm, and nobody batted an eyelid other than to share tips on how to make you more comfortable…

All of that those considered to be so normal at college, whereas at university it was anything but!! And I can describe it in no other way than a culture shock!

I went back to feeling like the odd one out, like I had before Hereward, and feeling like I had to make so much extra effort just to get on a level playing field in terms of even beginning to make friends with my able bodied peers. I couldn’t help but notice the awkwardness people felt trying to talk to me and I hated it. It wasn’t their fault, I could tell they were trying hard, but any awkwardness had melted away at Hereward and it felt like a huge step back to be feeling like this again.

There was one saving grace – I had chosen to go to the same uni, and do the same course, as my best friend. She was one of those people whose friendship I had really cemented in my final year at Hereward and we had become pretty much inseparable. If it wasn’t for her (and a few other lovely people I had met there including a few flat mates, class mates and carers), I undoubtedly would have quit. There are no two ways about it, I would have left uni and moved back home.

Deep down though, I knew moving back home would’ve also been a huge step back for me. I had learned to live daily life without my parents looking after me and I knew if I went home all of that would be undone. I would have got too comfortable again with how easy and effortless it was to have my Mum do everything for me. It would have been detrimental to our relationship.

More on this in the future but I truly believe when your parent is also your carer, it puts a strain on the mother/father-daughter relationship. Since I moved out my parents and I had all found our freedom and we were getting on better than ever and I didn’t want to give any of that up. So, deep down I knew I had to (and wanted to really) stay and finish my degree.

Throughout my time at uni I was still going on the train to visit Ali for the day most weekends and any days I got free during the week. One day towards the end of my first year, on Valentine’s Day in fact, I went to see Ali and he asked me to marry him!! And of course I said yes! It was one of the happiest days of my life, we were engaged and I was so excited.

Ever since I started uni I had been planning to make a start on the arrangements to live together. This is not an easy task but when you are both disabled – care funding and agreements needed to be put on place.

Ali already had a a few hours of care a day set up at home in London, but to move in with me we knew he would need live-in care, like I already had at uni, and we knew he’d have to have that funding paid for by my home town instead of his. I knew all of these things would take a massive fight to achieve and in reality it would take a couple of years to win that fight. So I set the ball rolling. Well, it was a bigger fight than I could’ve ever imagined and, in fact, took over two years to win. I will talk about what that fight entailed another time.

For now, the important thing is that I won and the day I left uni, with a 2:1, I was able to move home (very luckily for me I already had a house set up and waiting) and the day after that, Ali left London to join me. That was it! We were living together AND we were married!

We had decided to get married at the end of my second year of uni. I know it sounds bizarre to get married when we weren’t living together and then go back and finish my final year of uni, and it definitely wasn’t ideal, but Ali has a life limiting disability – DMD (Duchenne Muscular Dystrophy), which is a muscle wasting condition meaning he has no movement of any of his limbs and uses a ventilator (just positive air pressure for now) to breathe most of the time – and we wanted to have the wedding while he was well.

His disability is quite unpredictable so neither of us wanted the wedding too far in advance. So, when he finally moved in when I had finished uni, it felt so good to be able to live our life together again, the way we had wanted ever since he had left Hereward all those years ago.

So that brings us to now! (Finally I hear you all cry! lol) We have been living at home together for almost 3 years and married for almost 4. We both have live in care, which means there’s always at least 2 carers in the house at any one time (one each). I guess that topic is the main reason why I started this blog (that I start talking about right at the end, well done me! Not!! Lol) and will 100% be the focus of the next blog so I won’t keep you for too much longer now! You deserve a medal if you’ve got to the end of this! Haha!

But yes, the main reason for me starting this blog is that living with live-in carers is bloody hard work! Do not get me wrong, I’ve had/have some absolute angels of carers in my time who make it feel like a breeze – I hope they know who they are – but unfortunately they are few and far between.

You wouldn’t believe some of the issues I’ve had over the years! From carers taking a days leave to attend her child’s award ceremony and never coming back to carers suddenly deciding, after 11 months of doing so, that they aren’t going to assist us to drink alcohol (refusing to even touch the outside of the bottle), because of religious reasons!!

We’ve had so many issues with carers – but as Ali says we can’t change what we need or want (and we don’t ask for anything unreasonable!) and we’ve fought long and hard to be together so we can’t allow them and their rubbish attitudes to stop us enjoying our time together now. Life is too short.

There’s so much more I want to discuss on the carer front including the problems that can occur when you over/under bond (I’m definitely an over bonder!!) but I’ll leave that till next time!!

Thank you So much for reading this! I hope you’ll be back for the next one!

Future blogs will include (in no particular order):

Living with carers

Fighting to live together

Perceptions of/Disabled people in relationships

Hereward: special education vs mainstream

Jane McDonald!

Parents as carers

Guilt/anger/frustration

Public transport

Self esteem when you’re disabled

See you soon!!

Jess xxx