Alice’s Story

My life completely changed in November 2009 when I became ill with swine flu. I went from being a normal, healthy, active 14 year old and I became really ill with it and never really completely recovered. Before I became ill I used to love to dance, ice skate,  go out with friends and I enjoyed school. I lived a normal teenage life. I thought once I was over the swine flu everything would go back to normal but the fatigue side of things never improved and the pain I was left with was unbearable. My body just didn’t respond in the way it had always previously done, I had to stop dancing, ice skating and socialising with my friends because my body was no longer about to cope. I was in year 10 at school and I managed to carry on attending although I was having a lot of days off and I could no longer cope with walking to and from school or keeping on top of my homework so I was falling behind which just wasn’t like me. I had to rely on my parents for lifts to and from school and when I got home I was so exhausted I would fall into bed having to be woken to have something to eat and then woken again for school the next morning. That was the pattern I lived with for a little bit to try a keep going. After a couple of months of carrying on with school it became impossible because I was just too poorly and I became bed bound. I couldn’t physically or mentally do anything and I was in tremendous pain. Getting to the bathroom was a struggle; I didn’t want any help, I was determined to get there on my own and often I had to crawl on my tummy across the landing and just lie there as I was in so much pain and I didn’t have the energy to get any further. The pain was unimaginable and everything hurt all the time. My parents would often have to puree my food and spoon feed me as I was too weak and exhausted to even hold a spoon or chew. I lived in darkness and silence as any stimulation made all my symptoms worse. Over the months health professionals had taken numerous tests but everything came back negative. Clearly something was wrong but they couldn’t diagnose what. Eventually in September 2010 I was referred to a Consultant at Southampton General Hospital and following further tests ruling out other illnesses she confirmed I had ME/CFS. I continued to struggle with everything so sadly returning to school for my final year was no longer an option. I continued to exist mostly bed bound and on a good day housebound but still un able to do very little. I was then referred to a hospital unit in Southampton and put on a waiting list.

On the 18th of April 2011, the day before my 16th birthday, I went into a hospital unit called Burseldon House at Southampton General Hospital. There were Consultants, Doctors, nurses, physios, everyone and everything I needed on hand which really helped. Finally it was so nice to meet people who understood and did their best to help me. However, at first I hated it, I really didn’t want to go into hospital as I thought it would be the worst thing for me. The last thing I wanted when feeling so ill was to be away from home but it was for the best and they really helped me to get a bit of a life back. I also made some amazing friends in the hospital unit, Hannah, Adele and Jade who all helped me so much. It was lovely to be able to say I had some friends again after feeling so isolated from the world. I stayed there for nearly 6 months and they taught me all about pacing so I stopped doing boom and bust which helped and I was making improvements. I was doing the same small amount of activity everyday which I could cope with and then very slowly we would increase it over time until I had build up to a reasonably good level. It gave me my life back albeit very differently from before but I was able to do ‘normal’ things again. When I left in September the aim was to start college very part time at the same time as my piers, I had been out of education for over a year so I was desperate to get back into it and Burseldon House gave me a good stepping stone to do it.

I started college in September 2011 which was a huge achievement and one that only a few months before I thought would never happen. I was so determined to go and try to get a ‘normal’ life back. I only did 3 lessons a week which doesn’t seem like much but it was all I could cope with.  It started off well with my health and I really enjoyed my subject, I was even managing to stay for lunch a couple of times and I embraced the whole experience. However, after just a few weeks the pacing was not going well and my body wasn’t coping so it started to struggle, the pain increased, energy levels dropped and I had a relapse. Trying to get my health and the pacing back on track I had to take some time out of college. When I started again I was only able to attend college for my lessons and then go straight home and collapse in bed. I wasn’t able to do anything else outside of this. I continued like this but had more relapses and my muscles were really affected and walking became very difficult again. To enable me to try to continue college I had to make the very difficult decision to use a wheelchair in college which I hated but did it because it meant I could try and be normal for a couple of hours and be at college learning with other young people. Trying to balance or pace physical and mental energy is very difficult for me and one often gives way for the other with an increase in all my symptoms. In the end I managed to sit my exam and came out with 1 AS which I am happy with. Just to have made it through the year after all the struggles was an achievement for me, thank you to all those who helped me. Unfortunately my health deteriorated back to bed bound quickly after so I wasn’t able continue with college.

After more months of being bed bound further referrals took me under the wing of South Coast Fatigue at the end of 2012. They reinforced to me and taught me new things me all about pacing and building the foundations to enable a stable base line to be able to build up activity levels slowly without crashing back down and causing a relapse. I had manage to build up to getting out of the house once a week for an hour in my wheelchair but unfortunately one of my problems has always been pushing my body past it’s limits even though I know deep down my body is telling me to stop I push through it because I want to be able to do things but sadly my body isn’t well enough and I relapsed in the summer of 2014. I have been bed bound/upstairs bound since and learning to fight with my body instead of against it. I’m building up my everyday base line and I can’t wait for the day when I am able to get downstairs again and outside of the house but for now there is still always a reason to smile.

Being ill has been one of the hardest things I have had to go through but it’s made me who I am today. It’s not just the fact of being poorly for so many years it’s everything else that comes with it, your whole life changes forever. One of the hardest parts is losing your friends and people not understanding or caring. Every single day is a struggle and a fight, no one really ever knows the extent of suffering that M.E sufferers go through unless you live with them and see it day in and day out. Living with M.E is a full time job, we don’t ever get a break from it it’s constant. Yes, sometimes I might look alright, but looks mask a lot especially because M.E is an invisible illness. I’m so grateful for my good friend Chloe for sticking by me I don’t know what I would have done without her, she kept in contact with me every single day even when I wasn’t well enough to reply she has stood by me throughout the hardest times and still treats me as me. ‘ I’m not just the girl who’s ill, I’m still Alice.’ My family are amazing and I would not be able to get through each day without them and I can’t thank them enough for everything they have done and continue to do. They have helped me stay strong and keep smiling as well as my best friend Cara. Being bed bound or house bound can be really lonely and isolating. You miss out on a lot, the whole world carries on but your life stops. Everyone has bad days but at the end of the day there is always something to smile about. ‘Everyday may not be good, but there is something good in everyday.’ One of my favourite childhood films is Pollyanna, it’s about a little girl called Pollyanna who is always so happy and positive and she shares her optimistic outlook on life with those around her by playing the glad game. The glad game is where you focus on the good and find something that you are glad about in each day no matter how big or small there is always something to be glad about. One day Pollyanna gets into an accident and becomes paralysed and she looses her smile but all of the people she helped along the way go visit her and help her find her smile by playing the glad game and in the end she is able to walk again. Finding the positive in a situation isn’t going to make me better but it’s always good to focus on the positives instead of the negatives. So whenever I’m having a bad day I play the glad game and always find a reason to smile. 

In 2011 I turned to social media to try and find other M.E sufferers to know I wasn’t alone and throughout the years I have been in contact with and made some really good friends with fellow sufferers including Gracey who runs the charity with me. Almost everyone I spoke to suffered with the same isolation and loneliness on top of the illness as I had which is why I became pen pals with a few friends, receiving a letter in the post meant so much as it was contact from the big world outside which I hadn’t been able to see for months/years. It was at that stage I realised just how special getting some post was, it always brightened my day and made me smile. All along I’ve been determined something good would come out of having M.E and I just want to make others smile so I came up with the idea for Smile For ME. I knew from personal experience just how much getting a letter meant so I imagined how much a present would mean which is when I told Gracey about my idea. She instantly told me I could do it so with her and our families we worked on setting it up and we soon became a registered charity. I’m so passionate about Smile For ME, I love doing it so much. My favourite part is hearing the reactions and knowing I’ve made someone smile makes me smile even more and always makes my week.

Having ME has taught me a lot. I thought now being 22 the world would be my oyster and I would be on my way to becoming a nurse but it hasn’t worked out that way. I’ve had to get used to a very different life and find a new ‘normal’ I lost nearly everything so now I value everything and don’t take anything for granted. It’s changed my life completely and made me who I am today. Although I’ve lost a lot, I’ve gained a lot too. I’ve learnt what doesn’t kill you only makes you stronger and I’m stronger for going through this. 

Know you are never alone, I’m always here if you ever want to talk you can email me aliceeewright@gmail.com 💙