So much has changed... down Memory Lane.
College was a different challenge entirely. Whilst I found myself fighting the mindset of "I'm not going to be here long so what's the point in making new friends?" (a mindset I'd adopted to get me through that last year of school), this didn't turn out to be as big a setback as the accessibility issues I faced. Though I was at college, I was studying a higher education course, meaning that my classes were held in the higher education building, a newly-established facility at the time (2013). Considering it was a neew build, you would think that accessibility would be the least of my problems - oh no. There were constant issues with the lift (because why on earth would they build any classrooms on the ground floor?) so I regularly missed classes and was sent home as my hoist was stuck upstairs and there was nowhere else for me to go. We were also regularly let down by our lecturers and often found ourselves teaching each other! I was actually quite surprised at how much we'd rather be learning and teaching one another than dossing and going home early... The icing on the cake, however, was finding out at the beginning of our second year that the third year of the degree wouldn't be taught at the college so we would have to commute to Greenwich or settle for a HND diploma. Needless to say that I was unable to finish the full degree.
However, I finally secured a degree, first class no less, when I went to Uni in 2015. Once again, however, I was plagued by issues, namely the fact that the course was not accredited and so I am unable to practice in the field without further study. Whilst this was a massive blow to my career path, I still believe that Uni was the best time in my educational life. I tested myself and proved myself, made some amazing friends, and became acutely aware of where my true passions lie - which, ironically, turned out not to be in my field of study anyway! But Uni did turn out to be one of the most rewarding things I've done to date; the exhaustion, the stress, it was all worth it.
Every new year gets me feeling thoughtful but, as we enter not only a new year but a new decade, I find myself feeling a little emotional. I've seen a few posts over the last couple of days highlighting people's special moments and it's got me thinking about just how much has happened to me in the last ten years - big things, small things, good things, bad things, and utterly crazy things!
Friends, Family and Carers
Ten years doesn't seem like much but, at the same time, feels like an eternity. Looking back through my many photos taken over the decade, it really hit me just how many people have come and gone from my life. I've lost touch with old friends and gained new ones (I've even gained and then lost the same friends all within the decade), I've had friends and relatives pass away, and had new relatives born and introduced to the family, and I've even rekindled some lost friendships along the way. I've seen many carers come and go, and generally met some amazing people. I've even made connections with people, whom I consider to be true and dear friends, who I haven't even met in person - the beautiful side of social media! - but hope I'll get the opportunity to meet in the next decade.
But I've also had those special few who have stayed with me through the entire ten years, and then some. Now, there's absolutely no need to name these people, they know who they are, but I'd like to say a special thank you to you all for sticking by me through all the ups and downs, I definitely couldn't have gotten to where I am today without each and every one of you.
I think it's important to remember that not all friendships and connections last forever, but that doesn't make them any less significant. I strongly believe that people are brought into your life for a specific purpose; to teach you something, introduce you to something, or to simply highlight parts of yourself that you have neglected to acknowledge. They come into your life when you need them - their guidance, their support, their lessons - and make you a stronger version of yourself, and then, when you've grown as much as you can, you move on and you don't even realise until years later. And most of the time it does hurt at the beginning and it does feel like you're losing someone from your life, and it takes a long time to move forward but eventually you look back and understand that these relationships weren't meant to be for life, just for the moment, and instead of feeling sad, you feel grateful to them - and I still do.
I think it's important to remember that not all friendships and connections last forever, but that doesn't make them any less significant. I strongly believe that people are brought into your life for a specific purpose; to teach you something, introduce you to something, or to simply highlight parts of yourself that you have neglected to acknowledge. They come into your life when you need them - their guidance, their support, their lessons - and make you a stronger version of yourself, and then, when you've grown as much as you can, you move on and you don't even realise until years later. And most of the time it does hurt at the beginning and it does feel like you're losing someone from your life, and it takes a long time to move forward but eventually you look back and understand that these relationships weren't meant to be for life, just for the moment, and instead of feeling sad, you feel grateful to them - and I still do.
Education
It's actually crazy to think that, at the beginning of the decade, I was still in the thick of secondary school! 2010 was the year I finished my GCSEs and started sixth form but it really doesn't feel like ten years ago - more like ten decades ago!! I feel like such a different person from the girl who struggled through sixth form, overwhelmed by the work load of the International Baccalaureate and consequently dropping back a year, leaving me with a year at school without my friends. I think that the last year of sixth form was probably one of the hardest years of my life so far, both physically and mentally. Having to do a third year of sixth form was hard enough but having to do it whilst all of your friends move forward with their lives was even tougher. I really struggled mentally, made harder still by the fact that I was finding it really difficult to make new friends from the year group I was now in for the remainder of my time at school. Therefore, my last year was very isolating and I couldn't wait to be rid of the place by the end.
College was a different challenge entirely. Whilst I found myself fighting the mindset of "I'm not going to be here long so what's the point in making new friends?" (a mindset I'd adopted to get me through that last year of school), this didn't turn out to be as big a setback as the accessibility issues I faced. Though I was at college, I was studying a higher education course, meaning that my classes were held in the higher education building, a newly-established facility at the time (2013). Considering it was a neew build, you would think that accessibility would be the least of my problems - oh no. There were constant issues with the lift (because why on earth would they build any classrooms on the ground floor?) so I regularly missed classes and was sent home as my hoist was stuck upstairs and there was nowhere else for me to go. We were also regularly let down by our lecturers and often found ourselves teaching each other! I was actually quite surprised at how much we'd rather be learning and teaching one another than dossing and going home early... The icing on the cake, however, was finding out at the beginning of our second year that the third year of the degree wouldn't be taught at the college so we would have to commute to Greenwich or settle for a HND diploma. Needless to say that I was unable to finish the full degree.
However, I finally secured a degree, first class no less, when I went to Uni in 2015. Once again, however, I was plagued by issues, namely the fact that the course was not accredited and so I am unable to practice in the field without further study. Whilst this was a massive blow to my career path, I still believe that Uni was the best time in my educational life. I tested myself and proved myself, made some amazing friends, and became acutely aware of where my true passions lie - which, ironically, turned out not to be in my field of study anyway! But Uni did turn out to be one of the most rewarding things I've done to date; the exhaustion, the stress, it was all worth it.
Health and Wellbeing
Having a muscle-wasting condition is something I've grown up with and so I haven't really taken much notice when I start to deteriorate. However, having thought back over the last decade, I couldn't help but notice just how much my physical and mental health has changed. For starters, I find it so much more difficult to sit in my chair now; the pain I feel in my back, hips, and "derrière" when sitting has definitely increased, not to mention that I'm also finding it harder to breathe in a sitting position too (because I've always been an upside down kinda girl).
I've noticed just how much worse my breathing has become, slowly needing my nebs more regularly, and using my BiPAP/ventilator more during the day. Obviously this concerns me slightly, but I also think that, if this is what my body needs, then I should oblige as this will ultimately keep me healthier for longer - it's about finding the balance between not using my support systems enough and using them too much because either way can be very detrimental to my health. Although, it is frustrating at times, especially when your lungs get tired before your twenty-five year old brain does. I can't exactly let them bugger off to sleep without me...
Speaking of my brain, the other major change in my health is that of my mental health, a change that has actually been quite recent. I've always been a very positive and optimistic person, even through the confines of my disability, but Uni caused something to happen that I never expected: I developed a mild anxiety disorder. Now I say this in the loosest sense of the term as I'm not officially diagnosed, but I do now have anxiety attacks, something I never used to get in the past. The first time I experienced an anxiety attack, I had no idea what it was which actually made it ten times worse, and resulted in a three-day hospital stay.
It was difficult to determine at first as, because of my additional needs, I was concerned that I was experiencing something sinister regarding my condition; I had crippling headaches, shortness of breath, chest pains (when you have a muscle-wasting condition and know that your heart is a muscle, having chest pains is rather scary, so are headaches that are so bad they make you feel like you're about to pass out). Obviously it was nothing to worry about and all my test results came back negative, and once I knew that, physically, I was ok, the intensity of the attacks dramatically decreased. I still experience the odd attack now and again but, now I know that it's my mental state causing a physical reaction rather than disability-related problems, I'm able to talk myself through it which gives me a great sense of control and strength.
I've noticed just how much worse my breathing has become, slowly needing my nebs more regularly, and using my BiPAP/ventilator more during the day. Obviously this concerns me slightly, but I also think that, if this is what my body needs, then I should oblige as this will ultimately keep me healthier for longer - it's about finding the balance between not using my support systems enough and using them too much because either way can be very detrimental to my health. Although, it is frustrating at times, especially when your lungs get tired before your twenty-five year old brain does. I can't exactly let them bugger off to sleep without me...
Speaking of my brain, the other major change in my health is that of my mental health, a change that has actually been quite recent. I've always been a very positive and optimistic person, even through the confines of my disability, but Uni caused something to happen that I never expected: I developed a mild anxiety disorder. Now I say this in the loosest sense of the term as I'm not officially diagnosed, but I do now have anxiety attacks, something I never used to get in the past. The first time I experienced an anxiety attack, I had no idea what it was which actually made it ten times worse, and resulted in a three-day hospital stay.
It was difficult to determine at first as, because of my additional needs, I was concerned that I was experiencing something sinister regarding my condition; I had crippling headaches, shortness of breath, chest pains (when you have a muscle-wasting condition and know that your heart is a muscle, having chest pains is rather scary, so are headaches that are so bad they make you feel like you're about to pass out). Obviously it was nothing to worry about and all my test results came back negative, and once I knew that, physically, I was ok, the intensity of the attacks dramatically decreased. I still experience the odd attack now and again but, now I know that it's my mental state causing a physical reaction rather than disability-related problems, I'm able to talk myself through it which gives me a great sense of control and strength.
Achievements
When it comes to New Year and thinking about the achievements of the year gone by, I often find myself thinking that, in the grand scheme of things, I haven't really accomplished much. I'm often disappointed with myself for not pushing myself harder to do more, and I think a lot of it comes from judging myself against other people my age - most of them considerably more physically able than I am too. Most of my friends have jobs, some of them have kids, some are travelling the world, and some are even well on their way to stardom. Wow! And yet here I am, making plans for the year and rarely sticking to them, and a lot of the time they're not even difficult-to-fulfill plans. I find it incredibly frustrating, and somewhat embarrassing at times when I'm asked what I do for a living or in my free time and my go-to answers involve "I don't work", "I don't get out much", and "I watch a lot of TV".
However, I've been trying really hard recently to change my mindset and appreciate all of the things I do do for what they are - small achievements for someone who fiinds it incredibly difficult to do, well, anything! Life isn't a race after all. It's not about hitting milestones before a certain age, it's not about doing things just because everyone else is, life is a journey with no time-limit on milestones, no set goals that have to be achieved, but with one main purpose - to be filled, enjoyed, and not wasted. With this in mind, my last decade has gone from being a rather uneventful ten years compared to others', to being a decade to look back on and smile because, actually, considering the many obstacles I face on a daily basis, I've done a fair bit to be proud of myself for.
I think that having a strong support system has really helped me succeed. My family have given me every opportunity I could have wished for, regardless of the difficulties presented by some of them, and this has opened my world up tremendously. As previously mentioned, I've done really well academically, against many a professional opinion that it wouldn't happen, because I've never been told I can't do something by my parents - and as I've got older, my siblings, friends, and carers. My disability is physical, not mental, and having people in my life who know and recognise that has been such a Godsend; my life could have turned out very differently had I not had the opportunity to learn in a mainstream environment from an early age. For one thing, I wouldn't be a published author right now!
Not only did Uni give me a degree, it also gave me a co-author and someone who actually pushed me to publish my poetry. So now I have two joint projects, "Wheels Of Motion" and "On The Road To Somewhere", the latter even having an official publication event last November and being the top seller of the weekend, that was very exciting! Education has been my gym and, whilst my muscles continue to deteriorate with no way to stop it, I'm going to exercise my mind and creativity for as long as I am able.
As a lot of you may be aware, music is another great passion of mine (I mean enough of my blog titles have been inspired by music, even this one!). I've not been able to do a great deal physically in my life but one thing I can enjoy as much as the next person is music! But I think, given the fact that I can't do a lot of the things other people do, it's given me a rather unique appreciation of just how special music is. It brings people together whether near or far, it both sends you away or brings you back, it changes your mood, it can hurt you or heal you. I honestly don't think that there's much that music can't do? Anyway, that was deep and I digress... Music!
2010 was a very special year for me in terms of music as it was the year that I went to my very first concert!! I had always grown up thinking that concerts would be too difficult for me, considering the amount of time I spend horizontally, but my first was an open air show so we braved the unknown. It was Madness. Literally. Yes, sixteen years old and my first concert was not McFly (oh the shame!!) but Madness! I've always been ridiculously eclectic with my music taste and, when I heard that two of my friends were going, it seemed like the obvious choice for a first gig, especially since my Dad would have to take me too... And it was one of the greatest experiences of my life, purely because it proved it was possible! Since then, I've been to seven open air concerts - SEVEN - and have another planned for this summer!!
But 2015 was another special year as this was the year I finally built up the courage to brave "the arena concert". That year, me and two of my besties turned twenty-one the month that McBusted were playing at The O2 Arena, and I wasn't about to miss an opportunity like that! Granted, it was a difficult process the first time; I had to explain my needs, some of which are considered quite "unique" to most people, and get a doctor's letter to allow me access to two carer tickets instead of the usual one. However, I have to say, The O2 Arena have been one of the most accommodating venues I've ever been to, offering me the opportunity to have two complimentary carer tickets, as well as allowing me to lie down for the shows! I really wish more venues were as great as they are. So, whilst it's disappointing to have to wait for my favourite artists to play at The O2 (being the only popular indoor venue accessible to me at the moment), I'll always be so grateful and appreciative of them for the support they've given and continue to give me - four times and counting! Although one of those was for Micky Flanagan... he can't sing very well...
Going back to the writing again (because my brain jumps about more than Tigger after too much caffeine!), this decade also bore "Lucy the Blogger" - perceive that how you will haha! Now I know my blogging has always been a bit sporadic and, as much as I try, it probably always will be. But just having this gateway to inform people, amuse people, get people thinking and talking, and to highlight just how crazily-normal a life with a disability can be (not that I really know what "normal" is?), is a really rewarding feeling, and gets me thinking and exploring new ideas just as much, if not more than my readers; some of you may or may not know that this is my second blog, having started as "Demelza Teen" when I volunteered for Demelza Hospice Care for Children between 2013-15. Whether you know me as Demelza Teen, L.O.L, CrazyGirlLucy (Twitter and Instagram), or none of the above, I hope you enjoy reading my blogs. I don't need a large following - though it would be awesome, I write for the simple reason of this: I enjoy it.
However, I've been trying really hard recently to change my mindset and appreciate all of the things I do do for what they are - small achievements for someone who fiinds it incredibly difficult to do, well, anything! Life isn't a race after all. It's not about hitting milestones before a certain age, it's not about doing things just because everyone else is, life is a journey with no time-limit on milestones, no set goals that have to be achieved, but with one main purpose - to be filled, enjoyed, and not wasted. With this in mind, my last decade has gone from being a rather uneventful ten years compared to others', to being a decade to look back on and smile because, actually, considering the many obstacles I face on a daily basis, I've done a fair bit to be proud of myself for.
I think that having a strong support system has really helped me succeed. My family have given me every opportunity I could have wished for, regardless of the difficulties presented by some of them, and this has opened my world up tremendously. As previously mentioned, I've done really well academically, against many a professional opinion that it wouldn't happen, because I've never been told I can't do something by my parents - and as I've got older, my siblings, friends, and carers. My disability is physical, not mental, and having people in my life who know and recognise that has been such a Godsend; my life could have turned out very differently had I not had the opportunity to learn in a mainstream environment from an early age. For one thing, I wouldn't be a published author right now!
Not only did Uni give me a degree, it also gave me a co-author and someone who actually pushed me to publish my poetry. So now I have two joint projects, "Wheels Of Motion" and "On The Road To Somewhere", the latter even having an official publication event last November and being the top seller of the weekend, that was very exciting! Education has been my gym and, whilst my muscles continue to deteriorate with no way to stop it, I'm going to exercise my mind and creativity for as long as I am able.
As a lot of you may be aware, music is another great passion of mine (I mean enough of my blog titles have been inspired by music, even this one!). I've not been able to do a great deal physically in my life but one thing I can enjoy as much as the next person is music! But I think, given the fact that I can't do a lot of the things other people do, it's given me a rather unique appreciation of just how special music is. It brings people together whether near or far, it both sends you away or brings you back, it changes your mood, it can hurt you or heal you. I honestly don't think that there's much that music can't do? Anyway, that was deep and I digress... Music!
2010 was a very special year for me in terms of music as it was the year that I went to my very first concert!! I had always grown up thinking that concerts would be too difficult for me, considering the amount of time I spend horizontally, but my first was an open air show so we braved the unknown. It was Madness. Literally. Yes, sixteen years old and my first concert was not McFly (oh the shame!!) but Madness! I've always been ridiculously eclectic with my music taste and, when I heard that two of my friends were going, it seemed like the obvious choice for a first gig, especially since my Dad would have to take me too... And it was one of the greatest experiences of my life, purely because it proved it was possible! Since then, I've been to seven open air concerts - SEVEN - and have another planned for this summer!!
But 2015 was another special year as this was the year I finally built up the courage to brave "the arena concert". That year, me and two of my besties turned twenty-one the month that McBusted were playing at The O2 Arena, and I wasn't about to miss an opportunity like that! Granted, it was a difficult process the first time; I had to explain my needs, some of which are considered quite "unique" to most people, and get a doctor's letter to allow me access to two carer tickets instead of the usual one. However, I have to say, The O2 Arena have been one of the most accommodating venues I've ever been to, offering me the opportunity to have two complimentary carer tickets, as well as allowing me to lie down for the shows! I really wish more venues were as great as they are. So, whilst it's disappointing to have to wait for my favourite artists to play at The O2 (being the only popular indoor venue accessible to me at the moment), I'll always be so grateful and appreciative of them for the support they've given and continue to give me - four times and counting! Although one of those was for Micky Flanagan... he can't sing very well...
Going back to the writing again (because my brain jumps about more than Tigger after too much caffeine!), this decade also bore "Lucy the Blogger" - perceive that how you will haha! Now I know my blogging has always been a bit sporadic and, as much as I try, it probably always will be. But just having this gateway to inform people, amuse people, get people thinking and talking, and to highlight just how crazily-normal a life with a disability can be (not that I really know what "normal" is?), is a really rewarding feeling, and gets me thinking and exploring new ideas just as much, if not more than my readers; some of you may or may not know that this is my second blog, having started as "Demelza Teen" when I volunteered for Demelza Hospice Care for Children between 2013-15. Whether you know me as Demelza Teen, L.O.L, CrazyGirlLucy (Twitter and Instagram), or none of the above, I hope you enjoy reading my blogs. I don't need a large following - though it would be awesome, I write for the simple reason of this: I enjoy it.
Best Moments
It's hard to talk about my best moments of the decade without sounding repetitive - a fair few of them have been mentioned above! I could talk about concerts in more detail, or my writing, or my Uni days, but 1) I've already had you read about that for hours, and 2) I think I'll save it for future posts because both of which are ongoing things. But a lot of my best moments have been the more simple things anyway, the things that aren't necessarily classed as "achievements" but are just plain awesome!
Two of my very best moments obviously relate to loved ones. I'm a very friend/family-oriented person so anything special to do with people I love is definitely at the top of the list! The first is when I became a Godmother to a very special little man, and the second being when I was asked to be Maid of Honour for one of my oldest and dearest friends. Both occasions meant a great deal to me and I still look back on them fondly.
This decade also saw the changing of my respite; I said goodbye to Demelza (and hence Demelza Teen) and said hello to Jacksplace. After having two years after Demelza with no respite, my first stay at Jacksplace really was one of my best moments. I was so worried that I wouldn't find a new place for respite so, when I discovered Jacksplace, well, there are no words for the mix of emotions. I've since made some amazing friends, and been to some awesome events and outings, with - I'm sure - many more to come!
And so, as we approach 2030... just kidding! Although it probably seems like it's taken you a decade to read, it certainly does feel like it's taken another decade to write - so much for a New Year's Day post!! I promise not to write quite as much next time... But, all in all, I have had a pretty amazing one, here's hoping the "rawring twenties" are even better!
Two of my very best moments obviously relate to loved ones. I'm a very friend/family-oriented person so anything special to do with people I love is definitely at the top of the list! The first is when I became a Godmother to a very special little man, and the second being when I was asked to be Maid of Honour for one of my oldest and dearest friends. Both occasions meant a great deal to me and I still look back on them fondly.
This decade also saw the changing of my respite; I said goodbye to Demelza (and hence Demelza Teen) and said hello to Jacksplace. After having two years after Demelza with no respite, my first stay at Jacksplace really was one of my best moments. I was so worried that I wouldn't find a new place for respite so, when I discovered Jacksplace, well, there are no words for the mix of emotions. I've since made some amazing friends, and been to some awesome events and outings, with - I'm sure - many more to come!
. . .
P.s. I figured if it wasn't going to be published anywhere near January 1st then I'd go with January 20th 2020 because ALL OF THE 20s! I'm weird, I know...
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