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Sammy is the mum of RAiISE Founder Sophie. On this World Lupus Day, she shares her experience of being a parent of child with Lupus.

Lupus crept into our family so slowly that at first, initially it was hard to notice as small changes trickled into my daughters’ life. At first the odd strange pain in her shoulder, knee or back was put down to her being tired, overdoing it, or even that she had somehow strained something. Within a couple of weeks her symptoms had got worse and so we went off to the GP hoping for a bit of reassurance. At this time as a mum, I was concerned but not worrying unduly as all of her symptoms could be put down to something that we believed could be explained. Ironically after seeing the GP I was actually more worried, he tried to put breathing problems and all the other things that were starting to affect her everyday life down to a phase, her age and even suggested she would grow out of them. As a mum you know when something is wrong and as she had never had any major health concerns apart from the usual childhood illnesses I began to worry that he was totally getting it wrong.

In just a couple more weeks the symptoms had grown dramatically including hair and weight loss, and severe pain in her joints and chest with incredible exhaustion all of the time. We were quickly back to the doctor and this time saw a different GP. He listened, he actually listened and took in every word my daughter explained to him which was a huge relief. Blood tests showed there was inflammation and for the first time I heard the term JIA or Juvenile Arthritis. The doctor was concerned and so we were referred to our local hospital and my daughter was given some much stronger pain killers.

By now I was extremely worried. I felt totally useless as my beautiful 14 year old child cried herself to sleep, asking me what was going wrong and why was this happening to her? All I could do was promise that we would get to the bottom of it and that we would not stop until we had.  The consultant appointment at our local hospital some weeks later proved disastrous, instead of a paediatric rheumatology specialist we saw a nice but ineffective registrar. She decided we needed to see somebody else and so the  wait for some real answers continued… but just two weeks later with symptoms now at their worst it is safe to say I was worried sick. A phone call to try and establish the date of the appointment ended in total frustration as I was told she would have to wait three more months! Three months doesn’t sound like much if you are waiting for a holiday, a birthday or something fun. Three months when your child is having to miss school, cries regularly with pain all over her body, is losing weight rapidly, with her hair is failing out, and is now limping and sometimes having to be carried upstairs to bed and is fading before you and your husbands’ eyes, actually seems like forever. There was no way I could sit by and wait and luckily the helpful GP was as angry as me! When I look back at that time, I turned into a crazy, protective mother lion as I felt it was a huge emotional scary battle that we had no choice in, we just had to start fighting to find answers.

I am a big believer in sliding door moments, the times in our lives when one sometimes small decisions or choices change our path in a much larger way that we realise. The day when I rang the GP to say we simply could not wait three months was definitely one of those moments. As I suggested travelling to London to see a specialist at Great Ormond Street, he asked me if I would consider Alder Hey Children’s Hospital in Liverpool. Of course I said yes! Within forty minutes we had an appointment for literally the next week.

Less than a week later I more or less carried her into Alder Hey as her walking was so dreadful that day.  It was early April and for the first time since October when this nightmare had begun, I felt that my daughter was finally in safe. I still remember feeling so emotional  as we met the fantastic consultant who reassured us that they were going to help and give us answers. The word relief simply doesn’t touch it. Over the course of a long day she visited so many departments and had a huge amount of tests. Every single part of her body was looked at carefully and thoroughly. At the end of  that long day we were told that they were concerned it could be JIA or Lupus. My knowledge of Lupus was practically zero and so my husband and I looked into both diseases over the next week. The day we went back to Alder Hey for the official diagnosis was a mixture of relief and devastation. As a mum who had felt sick with worry for months I was relived to finally have answers. The reality of being told your precious girl has a lifelong diagnosis of Lupus was very, very hard. A specialist nurse was totally wonderful, answering questions, bringing tea, listening and passing tissues. The support of the whole rheumatology team was beyond words. They were amazing, caring, professional, supportive and kind in equal measure.  I would though have given anything to have swapped places with Sophie in a heartbeat and still would without any hesitation.

Over the last four years the support from the whole Alder Hey team has never changed. My daughter has had countless appointments in many departments, lots of hospital stays and many days hooked up to a drip as part of a management plan to keep Lupus as controlled as it can be. Slowly we got our daughter back and we will never be able to thank the team at Alder Hey for everything they have done.  We have become involved in research and the wonderfully supportive charity Lupus UK. We have become friends with people along the way who have shared our journey who I know will be life long as they have played such an important part in all that has happened over the last few years and an amazing support to Sophie and our family. We have tried to turn the most frightening, scary and heart breaking thing to hit us, into something that does some good for others with the start of RAiISE and other work we have become involved in.  The most important thing by far has always been to keep Sophie and her health stable and safe.

As a mum I still feel like so many other mums who have children going through a life changing diagnosis. At times I am ok, but often I am really angry and ask why did it have to be my daughter that has to go through all of this? This was not what we ever imagined when she was growing up so healthy with so much to look forward to as she became a teenager. Even when things are stable and being managed, life is never the same, you are never totally off guard.  You want your gorgeous teenager to have a normal life, to experience all the fun, laughs and joy you should be having at that age. But the reality of having a teenager with Lupus is that you are always waiting for the next flare or bump in the road.  I worry about what is going to happen in the future and sometimes wonder will Lupus throw us a curved ball when we are least expecting it? I know that no matter how much I do worry about the future it won’t change anything, we will just have to deal with things if or when they happen.  I think what I have learnt is that you will always have times when things go wrong, you do however find strength to get through, you don’t really have a choice!

You learn how to bite your tongue when someone’s response to you talking to them about a bad Lupus flare means they feel the need to tell you how their child has also been ill with a cold or bad cough… hardly a comparison. Trying to explain Lupus Fatigue is also a good one, most people have no idea that a good night sleep is not going to make it go away, if only it was that simple. People can look at my daughter and all they see is a happy girl with a smile on her face. They can’t see that sometimes that is just not the case, inside she is feeling horrendous and even doing the smallest and most normal of things is draining and impossible. It can be upsetting when you think that lovely and very close friends and family just don’t understand. I have to ask myself, would I have understood four years ago before all this started? Probably not but I think I have definitely learnt many things along the way. I know how important it is to talk things through with people who really understand and are going through a similar experience. I don’t think I will forget meeting for the first time a mum who also had a daughter with Lupus. I knew just by looking at her face that we had so much in common and it was so important to talk and listen to each other. I have also learnt how empowering it is for me personally to get stuck in and try and help others who are going through experiences like ours. It makes you feel that although you can’t change what this horrible disease continues to throw at your child, you can in some tiny way try and make it better.

I have learnt how having a child with Lupus impacts on a whole family and how there is no perfect way to get through this, you just have to keep trying your best. I have learnt that sometimes I am strong and ready to take on the world to support my daughter but on other days, usually when I least expect it, I am emotional and can cry at the drop of a hat when I think that everything is unfair. A long walk with my dog can usually clear my head!

By far and away the most powerful thing I have learnt and continue to learn is the unbelievable strength of my daughter. The way she has come to terms with everything that has happened from that very first day of lupus diagnosis has totally blown myself and my husband away. She has achieved so much whilst battling a long term chronic condition that is at times overwhelming and would defeat even the strongest person never mind a teenage girl.  As an undergraduate at university with a fantastic future ahead of her she has so much to look forward to. We are so proud of her. With her passion for research advocacy and charity work, plus an ambition of a career in film production, my daughter has a good future to look forward to.  Lupus will sadly not disappear  but I can say with some certainty it most definitely will not determine the whole of Sophie’s story, she will write that herself.

RAiISE-ing Our Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with an invisible illness. 

Meet Molly, a young person living with Fibromyalgia and Depression. This is her story…

My story.

For the first few hours of this story’s lifespan, I had written one word; I just sat staring at it. It’s a big, scary word, and it’s an even bigger and scarier condition. Fibromyalgia. Nothing would have prepared me for how much it would affect my life.

I have always been slow and heavy. There were times where I’ve been fast, like a young Lightning McQueen. At one of my sports days in first school I won the sprint race, I still have the stickers and photographs to prove it. I loved sports, the adrenaline rush kept me eager. When I was six years old I joined a martial art class; Choi Kwang Do. I felt like I had a place to belong for many years. I achieved two black belts at an early age and was part of the leadership team. I represented the Surrey Demo Team twice in a worldwide competition, coming 2^nd in Atlanta, Georgia in 2012 and 3^rd in Chessington, London. I had been encouraged to become an instructor by the master where I practiced. I was well respected. I was a mixture of Sporty and Ginger Spice. But as I grew older, I slowly but surely grew out of love. I didn’t have very many friends towards the end of my time there, my commitments to my martial arts were soon overshadowed by wanting to spend more time with my friends and playing football. It was the one sport I felt I had achieved something with.

In ‘normal’ day to day life, everyone would be complaining that I was so slow. I knew I was slow, I wanted to move faster but I couldn’t. It would cause me to fall out with my family because I was always late and wouldn’t do anything about it. When people used to poke and prod me in jest I’d hurt, they’d just tell me to “man up” or “stop being so silly”.

It wasn’t really until I started doing my GCSEs that I started to comprehend how different I seemed to feel to everyone around me. I was always deemed pretty average academically; mostly second set in my classes, always predicted a middle grade. I remember realising that I was never going to be anything special at school and I accepted it, but I never gave up trying to do better. In PE, I was always one of the sportiest girls. Although, I was arguably the sportiest in my tutor group, when it came around the last sports day for our year group, everyone just signed me up to the majority of the events; because, she’s Molly right? She’ll do it. I said no, I refused. That year I was so fed up of being one of the only people to put some effort in, I didn’t care for sentimental value, I was fed up of losing and feeling the whole weight on my shoulders because I was supposedly some saviour to my tutor group. My lack of confidence was most likely the demon of this time. If I had had the confidence I probably would have done alright. But I never wanted to just do ‘alright’. I was striving for better.

I had also started figuring out my sexuality. I jumped into a relationship with a girl for the first time. Keeping it a secret from everyone because I was so unsure and afraid of their opinions. Spoiler! That didn’t work out very well. Whilst I was juggling my mediocre GCSEs, I had family issues to contend with; my Uncle and Aunt had both been diagnosed with cancer, my Mum and Auntie were in a massive argument. I had issues with my sexuality and my then girlfriend was mentally abusive — although I didn’t realise it at the time. I vividly remember being in such a dark hole that I would just burst into tears in my lessons and had to leave. I remember vividly being told by some that “I’m too young to be sad/depressed”. I had resorted to silently crying in my room because I was unable to think as so many thoughts and problems filled my mind. I threw myself into my Spanish lessons as they were the only lessons I enjoyed and seemed to have I slight knack with. I came out with an ‘A’. I was over the moon. But I had also achieved a ‘C’ in PE, a whole grade below my target grade. I got to thinking, “maybe if I was faster I would have received a better grade?”, “maybe if I wasn’t so average I’d have done better?”, “If my hip hadn’t given way, maybe I would have made it further in the run?”. My heart sunk, I hadn’t done well in one of my favourite subjects. A tiny part of me knew that it was all part of a bigger issue. I went from feeling like a hybrid spice girl to a “Wannabe”.

My first year of college wasn’t as I’d expected it to be. I hid behind a facade and I was in a toxic relationship. I enrolled on a sport course, playing for Chelsea Foundation under 19s. The title sounds fancier than it was to say the least. I remember being the second goalkeeper on the team, I knew I wasn’t as good as the other girl and had many games on the bench to reinforce that. I played one game, we lost. It proceeded to go downhill. I ended up missing months of college as I was bed bound. It took what felt like forever for doctors to figure out what was wrong with me. I was 17 and had to depend on Tramadol to move. Osteopathy seemed to be the most appropriate treatment, I was diagnosed with a twisted spine and a twisted pelvis due to Hypermobility. I weaned myself off the Tramadol – which I was congratulated for by my doctors as it isn’t normally that easy.

When I reached the second year of college, I had a fresh start. I was single, had met an extraordinary, kind, beautiful girl. I was applying to university. I had good friends and I no longer had to exclude myself or felt the need to keep quiet about myself. I was able to move. I was playing more games and doing more training sessions. I was fit and healthy, or so it seemed. On the last game of the season, we had a 4-2 win; I tore two ligaments in my ankle. Just my luck!

This is when my health started to really deteriorate. It was like I stepped into a trance. It was frustrating, being so happy but being so sad. I had achieved the top grades to get into the universities I had applied for. But, I knew something needed to change. I had plans to go interrailing (travelling around Europe by train) and work in my gap year.

In the meantime, my Mum had been doing some research and spoken to one of my aunts who has the same condition as me. This is when she started to realise that I needed help. We visited a Rheumatologist at my local doctor’s surgery. He was puzzled. I went through months and months of research, blood and urine tests, and speaking to various people. There is not one thing that we didn’t test.

We decided to go Private and booked in to visit a specialist. My Mother and I felt that being on such high doses Naproxen, Co-codamol and Melatonin was more than enough medication for me to be taking at my age. Even my GP agreed.

I remember my appointment so vividly, which is ironic bearing in mind the awful ‘brain fog’ I had, and continue to be, plagued with. He simply asked me, “So what do you think is wrong with you?”. My answer was a flood of tears. I said “I was hoping you could tell me” with a crack in my voice. I opened my eyes to see a box of tissues. The doctor was kind and had a good sense of humour, exactly what I needed.

He tested my hypermobility and put some pressure on certain points in my body to see if they were tender, which they all were.

“I think this is a case of Fibromyalgia and localised Hypermobility”.

I sat up and cried. A part of me hoped that this would be a short time illness or something easily curable. I felt a multitude of emotions; relief, anger, joy, sadness. He talked us through potential reasons why I could have this illness and what I could do to improve my health.

I sat quietly, not saying a word, with tears streaming down my face for the whole journey home.

I have lost many friends, my confidence and feel like I have been deprived of a fit and healthy life. I have been called a liar and snubbed.

However, I will make more friends. I will continue to gain confidence. I will raise awareness. I will be fit and healthy. I will do well at university. I will take care of my mental and physical wellbeing. I will travel the world.

I am not a normal 18-year-old. I am not unreliable, my illness is. I will have good and bad days. I have a supportive partner, friends and family, and we will cope.

I have cried many many tears, and I will cry many more. But I will not let this stop me from being the best me I can be.

I have Fibromyalgia and this is My Story.

 

With trips to Parliament and the Department of Education, talks with graphic designers and charity registration, it’s safe to say that 2018 has begun well for RAiISE.

 

Amongst the flurry of ‘New Year, New Me’ posts and already broken resolutions, I’ve found it difficult to reflect on the past year and plan progress for the new one. RAiISE continues to grow at an alarming rate and we really are on the cusp of our products becoming real and beginning to make a difference. New Year is a time of change for many, but for us I hope that it simply means becoming bigger and better than ever and truly improving the day to day lives of young people living with invisible illnesses.

Naturally this growth can be scary. As RAiISE goes from a small idea I had in my bedroom one day, it can often be overwhelming just how exciting things are getting. Now, as an 18 year old student who’s never had a ‘proper’ job, filling out Charity Commission registration forms and writing business plans for funding bodies seems somewhat surreal and I definitely have a case of ‘imposter syndrome’ which can be quite terrifying. But just over two years down the line, the main feeling I still have with every step forward we take is excitement. This was shown most recently when earlier this week myself and Trustees Sammy Ainsworth and Simon Stones attended a meeting at the Department of Education. After discussing the future of RAiISE and receiving incredibly valuable advice from Ayath Ullah, whom we hope to work very closely with in the future, we were almost jumping for joy as we left the building (almost bouncing past the guards and forgetting to give back our security passes!)

Following this meeting was a quick dash across the road to visit the Houses of Parliament. After winning the Student of the Year Award in October, it was lovely to be invited to a celebration which looked at all the amazing work colleges are doing and hearing the success stories of student who had often had to overcome adversity. It was a great event hosted by the Association of Colleges and Peter Kyle MP. It was also lovely to meet Andrew Stephenson MP afterwards who spent time with us as we got to watch a Parliamentary vote.

After such a good first couple of weeks, we are looking forward to keeping this up throughout the year. Already we have been in touch with a graphic design company which means we can finally begin production on our information packs and resources. We’re also going to be introducing a new feature on our blog in which young people with invisible illnesses share their stories and experiences. We’d love to hear from as many people as possible as well as parents to get their perspective. If you have a story to tell, please get in touch!

I hope everyone has had a great start to the New Year and I am beyond excited to see where this one takes us!

After taking October to settle into University, November has definitely made up for having a quiet month! Meetings, conferences and, excitingly, an awards ceremony! Every year the Association of Colleges host their annual conference, discussing all aspects of the education sector and best practice in colleges around the country. Alongside this conference runs the Student of the Year Awards, featuring three categories celebrating students and apprentices who have achieved significant things during their time at college.

I was nervously awaiting the imminent results day when I received a call at the end of the summer from Nelson and Colne College, where I had spent the last two years completing my A Levels. I was absolutely delighted to be told I had been chosen as the college’s Student of the Year. At this point I was unaware of the scale of the award. The way I understood it, I had been chosen by my college as their Student of the Year, but what I didn’t realise was that I had been put through to the Association of Colleges shortlist! In fact, it wasn’t until a couple of weeks later that I discovered I had made it into the final three in the Young Student of the Year category, which focuses on students aged between 16 and 18. I was absolutely amazed to have got so far in a nationwide competition!

The ceremony was held two weeks ago in Birmingham. Naturally, my thoughts were consumed with what I was going to wear (this was definitely an occasion for new shoes!) The evening was a brilliant night celebrating colleges which were making an incredible impact in education. It was wonderful to meet all of the other candidates to hear all about the work which they had been doing over the past couple of years. I was particularly inspired by Joyce Abumujor, who was an Adult Student of the Year nominee. She shared with me her story of growing up in a very oppressive community in her home-country of Nigeria. She talked of leaving to come to England where she has gained qualifications in plumbing and bricklaying. She was now expanding her knowledge even further and studying for a law degree, with hopes of using this to return to her home and fight for women’s rights to education.

By the end of the night, after eating far too much of the delicious food, I was absolutely delighted when it finally got to my category and I was announced as the winner! It was incredible to be given this prestigious award after having the last few years of my education being so bumpy (to say the least) after my lupus diagnosis. If anything, I saw this as a true indication that having a complicated and debilitating condition such as mine, really shouldn’t have to stop me, or anyone else in a similar position, from achieving academically. I’ve always enjoyed school and academics and, whilst my illness changed a lot of things about my life, I hope that this award can show that it did not change that. This was made all the easier by the high standard of support I have received from not only my hospital, Alder Hey, but also, vitally, my college. The individual health care plan, which was created at the start of my course by myself and the college nurse, made my A Levels so much easier and the support from my teachers was unwavering.

The receipt of this award has really made me all the more passionate about ensuring that all students, no matter what their health needs, are given the correct support to achieve their potential. It was so wonderful to get this recognition for the work which has been going on with RAiISE for the last couple of years, but I’d also like to give a special mention to all our Trustees: Jenny Preston, Sammy Ainsworth, Marie Rowe, Simon Stones and Robyn Challinor who are so passionate about the work we are doing together and are absolutely vital members of this team. As always I am also so grateful  and want to give my thanks to everyone who has supported RAiISE in any way, attended a workshop or fundraiser or contributed to our growing network of exceptional young people who are living every day with complicated and incredibly challenging invisible illnesses.                                             

Welcome to our brand new official website! I’m so excited that we now have this platform to share our content, resources and updates as production of our information pack for schools continues to be in development. I wanted the first blog I wrote for our site launch to be filled with positivity and excitement regarding our latest developments. I want to (and will) write about my recent trip to the International Children’s Advisory Network Summit in Orlando, the fundraising events we have planned or the RAiISE branded products which will be on sale soon, however the last few weeks have allowed me a lot of time to reflect on what RAiISE is, our values and aims. In order to succeed, RAiISE must be an organisation which is honest, communicative and empathetic, reflecting the themes identified by our focus groups as most important in working within education and health. Therefore, I’ll admit that the last few weeks have been difficult.

Following the end of my A Levels in June, I was so excited to being able to dedicate my summer to working hard on RAiISE, and making all of the ideas that we have all been discussing for the past few months a reality. However, as I planned for an intense few weeks of hard work, I was hit with a terrible summer cold. Whilst this may sound somewhat trivial, I wanted to use this as an example of how invisible illnesses can be misunderstood. As many of you may know, I have lupus, a chronic autoimmune diseases, and it was difficulties with a lack of support from my high school which inspired me to found RAiISE. With lupus, illnesses such as the common cold which can be frustrating for most, results in days of barely being able to move out of bed, let alone out of the house, or even to a desk to complete the work I’ve been so looking forward to. As I write this, I am still recovering, as the debilitating fatigue has slowly begun to lift for the first time in two weeks, and my brain finally feels able to form a sentence! Fatigue, I have found, is one of the most difficult things to explain to those who don’t experience it, and often one of the biggest misunderstandings related to my invisible illness. Whilst this is by no means the worst I have ever been health-wise, and I have certainly not needed any specific medical treatment, I think it is important to acknowledge that illnesses such as mine are often a constant struggle, even when it is generally under control, as mine has luckily been for several months.

On a more positive note, there have been some more exciting updates for RAiISE over the past few weeks as well. Last month I was given the incredible opportunity to travel to the International Children’s Advisory Network (iCAN) Summit in Orlando, Florida in which we spent the week meeting with Young People’s Advisory Groups (YPAGs) from all over the world. The groups are made up of young advocates advising healthcare and research on local, national and international levels. The first YPAG was set up by Patient and Public Involvement Manager for the National Institute for Health Research and RAiISE Committee member, Jenny Preston, back in 2006 at Alder Hey Children’s Hospital in Liverpool. It was wonderful to see that what began as one small group has been able to expand and build a network globally, through iCAN and the recently formed eYPAGNet, or European Young People’s Advisory Network. As I spoke to young people and parents from across the world, I realised that the issue of invisible illnesses being misunderstood is far too common, and something which needs to be addressed internationally. It was a great week spending time with old friends and making new ones.

Whilst I was away, I received two exciting pieces of news. I had submitted applications to present RAiISE at two conferences and received word from both that they had been accepted. In September, I will be presenting at the Paediatric Rheumatology European Society Congress in Athens and in November, I have the opportunity to present later in the year in London at INVOLVE, a conference celebrating patient involvement in healthcare and research. Both of these are brilliant opportunities to spread the word about RAiISE in the world of healthcare.

One of our main focuses currently is fundraising. As the pack gets closer to completion, naturally we need to raise the funds for its production and distribution. To begin, I’m looking forward to the RAiISE Launch event, which will be held at my home on Saturday 26^th August. At the event we’ll be showcasing the latest draft of the information pack we have been creating, giving people the chance to view all our work. We’ll also be selling the first batch of our brand new RAiISE merchandise. Our talented volunteer, Janice McCann, is a keen supporter of the organisation and has kindly donated a huge array of merchandise, including Swarovski crystal jewellery for sale. We’re also looking forward to our second fundraising event, ‘RAiISE the Roof’. There’ll be live music, DJs, and lots of food at Waddington Social Club on Saturday 28^th October. It will mark RAiISE’s second anniversary and will be a fantastic opportunity to celebrate all the work we have done so far.  If you are interested in buying tickets, please contacts us at raiiseuk@hotmail.com

Despite illness over the past few weeks causing a few setbacks, there have still be so many positives, largely due to the amazing support from everyone who contributes to RAiISE. Thank you to everyone who plays a part in this, helping us make a real difference to countless young people with invisible illnesses.

 

It’s been a while since my last blog post but that certainly doesn’t mean that we haven’t been busy with all things RAiISE! It has been an incredibly exciting few months as I have been promoting and sharing the project as we become closer to finishing the first draft of our information pack.

Continue reading “Content Development, Promotion and Awards!” →