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As those of us with chronic illness will fully understand, no matter where you go, your illness will follow you. Whether that be your physical pain, depression or anxiety. It never slides, its a heavy weight to carry but it also can't stop you from achieving the things you really want to in life. Accepting that where you go these things follow you, is often very daunting and scary as there is no off switch. When you have a chronic illness, it feels like it robs you of typically normal and consistent things in your life. As well as celebrations. Time stops for no one yet those with chronic illness end up missing out on a hell of a lot.
With March 1st fast approaching after a rough January, I seemed to be in a huge rut regarding my forthcoming birthday, my 21st birthday to be precise. Ever since the age of 13, I had spent every birthday ill in bed, crying in pain and just wanting the day to be over. It never felt like a birthday, despite my family's best efforts. It just felt like another day in huge amounts of pain, where I still felt miserable and ridiculously unwell and disabled. My birthday just seemed to become an anniversary of intense pain in my life with lack of progression or celebration rather than a day that is solely dedicated to the day you were born, the days you have lived on this earth and who you have become as a person throughout this time as you turn a year older.
With loss of friendships, being able to do things with a group of friends was off the cards. As I always say, keeping friends when you have a chronic illness is hard as you are unable to spend huge amounts of time with them. When it comes to doing things together, being able to do something suitable to your own needs but suitable & exciting to people of similar age who are not disabled is even tougher. You tend to be more limited with the activities you can physically join in with and it can sometimes minimise your friendships.
This was when I just knew I couldn't let a birthday such as my 21st be the same as all the years before. I didn't want a fuss, I just wanted a distraction that would help to 'forget' my pain for a minute or two. Social Media is a place full of what others a doing for this occasion and with no input from a fellow disabled person as an example, I felt at a loss. I was racking my brains, as well as my friend Lauren's trying to think of things I felt I could manage. My goal was to replace the near decade of miserable, painful birthdays with an amazing memorable trip that would counteract the birthday I had craved for so long. My fear was that this wouldn't be the case because of my illnesses and disability. Alas, after excessive researching and a lot of self convincing, the idea of disabled friendly (highly important) Disneyland Paris was born.
I knew before I left just how difficult it would be, however knowing that I had always dreamed of a memorable birthday like the one I was planning to have seemed to calm me inside. Hoping and being optimistic that even if I couldn't manage much, that it would still be extremely worthwhile and enjoyable because I wouldn't be stuck in the place I am 24/7, home. I'm sure thinking this way actually made the trip seem more achievable too, despite my families worries. Any other person of this age doesn't have to think twice about a spontaneous getaway. Unlike those who are chronically ill, they need carers, someone to help them during travel, someone to push their wheelchairs but most importantly someone who doesn't mind this responsibility for more than a few hours. It's a tough responsibility to ask of someone. Occasions like this often seem less like a short getaway and become more of a working carers trip.
This was when I just knew I couldn't let a birthday such as my 21st be the same as all the years before. I didn't want a fuss, I just wanted a distraction that would help to 'forget' my pain for a minute or two. Social Media is a place full of what others a doing for this occasion and with no input from a fellow disabled person as an example, I felt at a loss. I was racking my brains, as well as my friend Lauren's trying to think of things I felt I could manage. My goal was to replace the near decade of miserable, painful birthdays with an amazing memorable trip that would counteract the birthday I had craved for so long. My fear was that this wouldn't be the case because of my illnesses and disability. Alas, after excessive researching and a lot of self convincing, the idea of disabled friendly (highly important) Disneyland Paris was born.
I knew before I left just how difficult it would be, however knowing that I had always dreamed of a memorable birthday like the one I was planning to have seemed to calm me inside. Hoping and being optimistic that even if I couldn't manage much, that it would still be extremely worthwhile and enjoyable because I wouldn't be stuck in the place I am 24/7, home. I'm sure thinking this way actually made the trip seem more achievable too, despite my families worries. Any other person of this age doesn't have to think twice about a spontaneous getaway. Unlike those who are chronically ill, they need carers, someone to help them during travel, someone to push their wheelchairs but most importantly someone who doesn't mind this responsibility for more than a few hours. It's a tough responsibility to ask of someone. Occasions like this often seem less like a short getaway and become more of a working carers trip.
It's a lot to ask of a person and I often shy away from this through embarrassment and not wanting to bundle my problems on someone else. So rather than asking a friend to come with me, I asked mum to join me. Not only is my Mum my best friend, she also helps me without even being asked. I love that we know have fond memories of our trip together that only we share. I know my two best friends (who are not ill) would do anything to help, however I still would feel wrong asking of them to do this. Although, I have researched into how to make any future trips slightly easier and am open to options such as electric scooters to take some of the 'carer responsibility' away if I return. When it comes to trips with friends, my fear lies in the unpredictability of planning something with them yet being too ill to participate and the repercussions of them also missing out that I often over think and feel terribly guilty about. Plans may often need to be adapted at the last minute and pain levels may interfere. In the past, I would have tried to coat my disability and appear to normal, agreed to do what was easiest for everyone and majorly suffer physically with the consequences.
Now, I cant even hide how disabled I feel and have become and realise how foolish it is to put my body under such unnecessary strain. Even standing for a few seconds can make my body feel like I've run a marathon. My ability to walk for longer than a minute without pain has increased drastically too meaning that now my wheelchair must come everywhere. In my mind, I wish to be fully independent and don't like having to ask for help. However my body, screams for help. I feel so physically disabled as of late, that I would be lost and frightened without the help of others that have a good understanding of my illness and it's unpredictability. I just passionately dislike asking for it or the fact that I need it.
It's through having memories in life that make illness a little easier to deal with. There is so much socially those with illness miss out on over the years. Those who become ill in adult life usually have a positive outlook on a life that has been filled with wonderful memories and achieved goals. Those who become ill as a child or during their teenage years like myself, unfortunately can't be apart of making many memories and therefore don't have an escape to recall upon in desperate times. Memories and dreams often take a longer time to attain and achieve, which is why if you really want to do something despite all of your pain, just go for it. I've known for years I wanted to be out of the house for my big birthday and I'm so glad that I pushed myself to do so and booked a last minute trip.
Disneyland has given me an amazing, happy and joyful birthday memory as well as being the best 21st celebration I could've envisioned for myself when I was younger, illness existing or not.
I will look back on the last few days with extremely fond memories as well as realising that if I think positively, I will be able to achieve the things I truly set my mind too.
* I will be uploading an in depth review on my own experience of being disabled in Disneyland Paris. It's a destination that a lot of people have concern or worries over when disabled and this topic was something I found useful to research myself.
Now, I cant even hide how disabled I feel and have become and realise how foolish it is to put my body under such unnecessary strain. Even standing for a few seconds can make my body feel like I've run a marathon. My ability to walk for longer than a minute without pain has increased drastically too meaning that now my wheelchair must come everywhere. In my mind, I wish to be fully independent and don't like having to ask for help. However my body, screams for help. I feel so physically disabled as of late, that I would be lost and frightened without the help of others that have a good understanding of my illness and it's unpredictability. I just passionately dislike asking for it or the fact that I need it.
It's through having memories in life that make illness a little easier to deal with. There is so much socially those with illness miss out on over the years. Those who become ill in adult life usually have a positive outlook on a life that has been filled with wonderful memories and achieved goals. Those who become ill as a child or during their teenage years like myself, unfortunately can't be apart of making many memories and therefore don't have an escape to recall upon in desperate times. Memories and dreams often take a longer time to attain and achieve, which is why if you really want to do something despite all of your pain, just go for it. I've known for years I wanted to be out of the house for my big birthday and I'm so glad that I pushed myself to do so and booked a last minute trip.
Yes the trip was challenging, exhausting and seemed daunting and unachievable beforehand. But was it worth it despite all of the obstacles that occur in daily life with illness ?
ABSOLUTELY
It was also incredibly exciting, relaxed (who would've thought) and fulfilling. I really felt like for the first time in years, I had achieved something. From start to finish, such as booking/organising every aspect of the entire trip to actually physically managing to participate over the course of a few days. I could burst with how much I enjoyed my time in Disneyland Paris as well as what I managed to achieve despite all of the pain I was experiencing.
Disneyland has given me an amazing, happy and joyful birthday memory as well as being the best 21st celebration I could've envisioned for myself when I was younger, illness existing or not.
I will look back on the last few days with extremely fond memories as well as realising that if I think positively, I will be able to achieve the things I truly set my mind too.
* I will be uploading an in depth review on my own experience of being disabled in Disneyland Paris. It's a destination that a lot of people have concern or worries over when disabled and this topic was something I found useful to research myself.
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