What people don’t tell you..
As a 21 year old girl, with no care in the world, living life at an easy and comfortable pace my world got turns upside down. Working a job I had moaned about for three years, spending my wages on make up, clothes, cigarettes, going out clubbing, to Nando’s.. spending my money recklessly but happily. Gaining a debt that if the unknown happened I wouldn’t be able to manage and cope with, 1000s of pounds on catalogues, credit cards, loans.. at the time I never knew or even could have imagined my circumstances ever changing or being struck with the touch of fate that was to come.
I used to live my life by just simply surviving, going to work as a carer for adults with special needs and disabilities. Never would I have dreamed I was soon to be in a similar position as the people I cared for. I would take everything for granted, the ability to see, walk, talk, breathe and honestly just exist. If I’d have known what I now know, wow would my life had been different.. some of the mistakes I made that I never knew would haunt me the way that they do would have been made. I live in regret every day for some of the actions I decided on doing in what I call ‘my previous life’.
You may be wondering what happened to me.. well, I’m going to tell you right now.
Late 2017 – it must have been around November/December time.. I started feeling really odd, i would explain it as wobbly and I would put it down to me being a clumsy person in general, or hay-fever.. I guess I knew something was up but I just never wanted to go and get checked out. It started off as my legs being very heavy, to which I did go to the doctors concerning and they simply told me I must have sciatica, I was prescribed naproxen and started taking a course of that to see if it made me better, to which it didn’t. Then around Christmas time my eye sight had become very blurry, I honestly was convincing myself it was something to do with my allergies of animals or just hay-fever.. I stared to walk into walls and fall down stairs at work, I struggled with activities as simple as making a bed. I reckon I had been moaning about these strange symptoms for a good year or so without even realising. One day I was at home and I struggled to use my knife and fork to cut my dinner up and that’s when I panicked, my mum told me we’re going to the hospital tomorrow because this is not okay. I was so scared, I think fear of the unknown is what scared me the most, without sounding dramatic I honestly thought I was dying, even though there was only a small amount of pain my symptoms were unexplainable.
I went to the hospital and was in A&E all day long, it took hours to be seen, 4 different doctors later, still no answers, they decided they wanted me to stay in hospital for further checks. Now this, this scared me. To go on to be transferred to another hospital, where many blood tests were done, lumbar punctures, brain scans, mri scans.. you name it, I had it done. At this stage I honestly though I had a brain tumour or something seriously dangerous as no one understood what was happening to this 21 year old girl.. my hospital trip resulted in me discharging myself through anxiety and stress. I came home and rest waiting to find out my diagnosis. It wasn’t until April 2018 where I was called by a neurologist explaining to me that by chance he came across my records.. he asked me to come in to see him regarding them, and again, the stress and anxiety creeped back up on me. I was told other the phone that it was quite clear to him what my diagnosis was and how it’s the most clear he has seen a diagnosis of my condition in his career. He went on to tell me that I have several lesions on my brain and spine – which I had no idea what he was talking about – it turned out he went on to tell me that we’re 100% sure you have multiple sclerosis, there was no sorry to tell you this or this is what it means, I just was left until my next hospital appointment awaiting an explanation. I turned to google (obviously) it seemed like the best way to learn about my new acquired condition. It told me many things but not what I wanted to know so desperately, was I going to die from Ms? The thought had been travelling through my mind at 1 million miles per hour, over and over and over again. I remember typing it into google, knowing that you cannot die from MS but checking anyways to be sure. I couldn’t believe this was happening to me, What had I done to deserve this? Why did I get it? What did I do wrong? So many unanswered questions I need to know the answers too, but no one knew what to tell me.
My current job that I had been in for 3 years wasn’t working out as well as it used to, I struggled on a daily basis trying to do what I used to do so easily which now felt like a marathon ever day, my manager wasn’t understanding and I couldn’t cope with the stress of it anymore, so I remained of sick due to my being unwell and unable to do my job. It wasn’t until months later I picked myself up slightly.. I applied for a job in a bank, it was amazing money and a fantastic opportunity for me. I went to my friends house to prep for the interview and my mum was driving me there and I knew I was going to get the job because my favourite song played on the radio. It was fate. I got the job. I was so excited I cannot even begin to explain the amount of excitement I endured. So I started travelling 2 hours a day to get to Southend where my new job was based, something by the way, I would never have done previous to my diagnosis. I was so proud of myself, I felt my independence, integrity, enthusiasm for life. I loved the feeling of going back to work and starting a whole new chapter of my life.. I suppose this was a way to over compensate for the other new chapter of my life that I was trying so hard to forget about.
During this time I started my treatment, I was injecting myself 3 times a week. It was painful. Never did I let on how much it was hurting, how much I dreaded doing that injection every other day, how the feeling afterwards dragged me down slower and slower. My work life was going well, I had met an amazing man who wasn’t worried about my condition, that is one thing I am extremely grateful for in this period of my life, everything was wonderful. Sure, I was tired, exhausted even.. but that didn’t matter because I was taking charge of my life and doing something positive about my situation! It felt great! Until I discovered that I was going down again.. the whole 2 months I had been doing this for, I was doing without the use of my left hand.. I was quite conscious of people noticing this and believe me they did.. the constant embarrassment and anxiety it caused me knowing I would have to explain that at the age of 22 now, That I am disabled. I’m not sure if it’s a positive or a negative that I look so well abled.. I look very presentable, happy, attractive.. these factors are not of what someone who is disabled are supposed to posses I’ve learnt in my short stint with this condition.
I was on my way home from work at the train station one day, I ran for the train, which believe me was enough or a struggle without my next problem, I fell.. Yep, surrounded by people.. I fell, within about 30cm of the tracks.. I was petrified. Not one person helped me, I was absolutely in shock. I got on the train and I was fine until my mum was meeting me at the other end and I broke down. I knew I wasn’t well. I took some time off work, it was too much for me, slowly I was losing the sight in my right eye.. I was in relapse again. Losing my vision in my right eye was possible the most frightening thing that has ever happened to me, but I got through it. With a course of steroids I was feeling better, just when I’ve gained my positivity back slightly.. I was told my treatment isn’t working, I have multiple new lesions on my brain and they would like me to do a round of chemotherapy to help me. At this moment I felt my whole world come crashing down around me, I had never felt so low. I asked the nurse ‘am I going to lose my hair?’ Thankfully there are many types of chemo and mine isn’t that extreme. When you tell people you’re having a course or chemo I’m not sure whether the believe it or just lack of understanding. I’m not allowed to go back to work now until all of this is done, it’s a waiting game. And let me tell you; the wait is excruciatingly draining.
In the mean time I await my personal independence claim (my second one may I add). I’m made to feel like a criminal because I desperately need the help of my government that I have been contributing to since the moment I was legally allowed to work and pay into my national insurance and tax. You are made to feel like scum of the earth, I do not want this money.. but I need it. I would much prefer to be going to work for it and earning my money like any other 22 year old, but apparently the system believe that all kinds of tests and queries over my disability and whether it is worthy enough of a little bit of help, needs to be decided. Little do they know that every single day for me is a struggle, some days I feel my old self again, and I’m extremely happy, maybe that’s just my anti depressants I now take due to all of this, but I live for those days. My disability isn’t just a physical one, its mentally and emotionally affective too. Every single aspect of my new acquired life is different to my previous. I have the constant stress of having no money, which means I have no social life, I cannot pay my debts off, which means that I am harassed constantly, my only think to look ahead for is the next hospital trip I’m going to take. I lay in bed dreaming of going on holiday and going to festivals or even simple things like going out for a meal with my friends, family or boyfriend. I wake up to statutory sick pay of £370 and I feel like I’m 16 again. At times I feel like this disease has stolen my life from me, that it’s ruined my past, present and future. But then I tell myself, it could always be worse. All of the above might sound very negative to all of you, but to me it’s positive.. to me it’s made me who I am.. to me it’s made me stronger, more understanding, more loving, more caring. To me it’s made me more, me.
All of this stuff is what they don’t tell you, this is what they don’t tell you in school, at work, in the hospital.. this is what you find out yourself. I’m not sad about my condition, I am sad about the holt it had put on my life, I am sad about the things that I cannot do. I never thought I would be so envious of everyone going to work, being active, doing things that I just simply cannot do right now. But I remain hopeful, I am hopeful my next treatment will work, hopeful that my life will go back to how it was and be even better, I am hopeful for my future and I know that a measly few years it could be hard for me mean it will be a lot easier in the future. This is just something I will get through with the support of my family and friends and my neurologist team, all of whom I am extremely thankful for and I would not be coping without their help.
This is what they don’t tell you in life, that everything can change in the blink of an eye and you should always be grateful for everything you have, as small or big as the things you have may be, they are worth being grateful for.
My whole point to this is to never wish for any different and to learn to be content with what you have and appreciate it. If I can make it, every body can.. I’m not sure in what this very longwinded message is in awareness for but here it is, this is my story or diagnosis and how it has affected my life. I remain living in positivity and impatiently waiting for things to get back on track. If I can do it, everybody can..
Aimee x
The only way is up 