My Story: Loretta Sophia Fletcher
Autumn 2011
NRAS medical advisor: "It is wonderful to hear Loretta's determination and success in her new career. Her experience just shows how variable RA can be. Studies now show that in a minority of patients their disease can stop progressing without medication, and sometimes even go into remission without needing drugs. However, controlling the symptoms for most people is not enough, and the inflammation can continue to grumble on and damage joints. Consequently the large majority of patients need ongoing drugs to prevent progressive joint damage. Let us hopw that Loretta stays in that minority of patients who get by on simple medication, and that there is never any indication of any further damage to her joints that might suggest more powerful medication is needed."
My name is Loretta and I have a story I would like to tell you. I was 19 and had been working in the city as a receptionist for roughly a year, I loved my job it gave me the feeling of being independent and I was able to afford my own flat with my boyfriend for the first time!
We had been living together for just over a year and it was going really well. I was even having interviews for another job, having the opportunity to go into something I knew I would enjoy, Interior design, and potentially earn better money to save for 'our' mortgage we always talked about.
I remember going for my interview across town one day and as I was walking my whole body was in so much pain, I couldn't actually cope with how excruciating the pain was without walking and crying. I sadly had to walk to my interview with no shoes on, that way I knew I could fight the pain when I put them back on to get through the interview. I was so embarrassed walking along in the city surrounded by all the lovely dressed people!
I got through that dreadful day somehow and when I got home I fell into bed in agony. I struggled in to work the next day and to my horror found that I could no longer pick up the phone, my wrists had totally stiffened up. I had no idea what this could be and I felt very scared. This is where it all started.
In the weeks leading up to these events, I used to get the train home with my mum from work now and again, as she also worked in the city (which I loved). I would sit on the train and people would come piling on and before we knew it the train was full. I had people either side of me, my mum sat opposite so we could talk about our day. My Mum said to me one day 'why don't you sit back and relax?' I then realised I hadn't mentioned before that I couldn't sit back as the pain of someone even lightly brushing past or touching my upper arms was unbearable! Obviously then my Mum started to worry as I had been quite healthy up until then! She got on the phone to the doctors right away and booked me an appointment.
A couple of weeks went by, I had the doctor’s appointment and was told, if you can believe it, I had tendonitis. I took the advice of the doctor and carried on, thinking how have I managed to get that?
In the meantime I tried to carry on and pretend everything was okay. I received a call and found out that I was asked back for a second interview. I was over the moon and nervous at the same time, but in the back of my mind I knew it wouldn't happen as something was happening to my body I didn't have a good feeling about. I wasn't only hurting in every part of my body I felt very 'unwell' and couldn't quite put my finger on what is was. I still can't now.
I really started to suffer quite quickly from the first symptoms I had experienced, as the next stage I would go through was waking up crying in the morning, it really is the most horrible feeling. I remember being able to feel the wet on my face and pillow and being in total pain from head to toe. I couldn't move my head up, down or either side. It was very scary not even being able to lift my head off the pillow. I knew I had to get in touch with someone as my boyfriend had gone to work. I managed to get my phone from my bedside table and send a text to my mum, saying 'can’t come in' I didn't phone as I knew she would hear in my voice something was seriously wrong. But my mum and I are very close and she knew that this text was unusual for me so she phoned in to work and explained why she wouldn't be in and came over to me immediately, calling an ambulance on the way.
My mum and nan arrived together both very upset and confused as to why they was looking at a 19 year old healthy active girl, bed ridden.
When the ambulance arrived they took me straight into hospital as they had no idea what was wrong with me. At worst they suspected glandular fever by my symptoms. I was kept in hospital for the whole day having test after test. They then told me after about 6 hours they had lost my blood test results and needed to take them again! When they finally had some results they managed to keep hold of they said ‘we can rule out rheumatoid arthritis she doesn't have that!’ We later found out that maybe this is because I am seronegative. The hospital then sent me home with painkillers and told me they couldn't find anything wrong, just go home and rest. Totally confused and unable to walk, dress, go to the toilet or do anything myself, I was sent on my way.
The next day I woke feeling exactly the same, almost like I was paralysed. My mum decided to make some phone calls and booked me in to see a private rheumatologist....and well, all I can say is money talks...within 1 minute of being examined I was told the news that I have rheumatoid arthritis. I remember looking my mum in the eyes, while she was putting my trousers back on, and all of a sudden feeling even more scared then I already had been. It hit me that I had a disease and I said in a shaky voice 'oh my god I have rheumatoid arthritis!' I didn’t even know what it was but I was really, really scared about my future. It suddenly felt better not knowing what was wrong with me as then I didn't have to face the fact of the life changing effect that this would have on me and my family. In that split second I knew my life had changed forever. I actually felt numb, confused, and shocked. As I was so badly seized up and in pain the consultant gave me an injection of steriod into my bottom so that it got into my system quickly. He said it would make me feel better! He asked if we have any questions and I remember asking silly questions. I did ask 'what is RA?' as I didn't really know anything about it at all! Not that I could hear or take in anything he was saying back to me.
I then had to face the fact that I had no idea when I would be able to go back to work, if I would ever feel better and what future I had to look forward to. I just felt really scared about everything. I wanted to stay in bed until it all went away.
The next few days I found myself having lots of blood tests, appointments, and taking lots of medication. I was put on methotrexate to start with. It was an astonishing 10 tablets per day that I had to take at one time! The first few weeks I was on this I must admit that I found I could grip things again, like doing up my clothes, going to the toilet on my own and I could move my wrist again. Although it was weak I could move! I was still off work at this point and my employers seemed quite concerned that they wanted me to rest and get better! They obviously had no idea about RA either and that I was not likely to get better any time soon or be able to go back to full-time work in the city!
I started having physiotherapy on a regular basis, helping me to strengthen my joints and helping me live with this disease. It was like a counselling session at the same time as they seemed to understand my pain. I loved going to the hydrotherapy pool sessions, I was always the youngest person there, but I actually loved seeing the older people getting help with their pain too! I always had people saying to me 'oh you are far too young to have RA'. I noticed that even more when I turned up for my appointments. This is why everyone thinks it is an 'old persons’' disease and I want to raise awareness that it affects so many more people of ALL ages and we all deserve the same amount of support.
My working future then came to an abrupt end. I tried to go back to work full-time. I pushed myself to cope, I had things to pay for and needed to earn a living! I had ambition and wanted to do well in life. Also, a huge part of me pretended nothing was wrong. I just wanted to go back to my old life so I went on in pain. I knew it wouldn't last long until my body warned me it’s too much. My doctor then advised me that I should try and talk to my company and ask to go back on reduced hours and work back up that way. I was struggling with the very strong medications I was put on and I actually looked and felt quite ill. Methotrexate is a strong medication that really did not agree with me, along with the others (hydroxychloroquine and sulfasalazine) that I tried! I even tried self-injecting on a weekly basis. I have had several steroid injections into my wrists. I was going to work in the city with the hope that they would support me through this and allow me to ease myself back to work while my body adjusted to my new-found disease. I was then hit with the astonishing and upsetting news from my employers that I had to go back to work full-time or nothing at all! I was so shocked I did not know what to do. I was advised to get legal support and contacted a solicitors firm to find out my rights in this type of situation. We had meetings with the HR department. I pleaded with them to allow me to work less hours so that I could cope. I really did not want to lose my job. I loved working in the city. They did not support me at all, they would not listen and in the end I felt like I was pushed to give up the battle. I was exhausted and the last thing I needed was discrimination against my disability. I needed to rest and to try to feel better, not fight for my right to stay in work. I was far too unwell for all of the trouble, I was very weak, all I wanted to do with my life was lay down in bed to ease my pain. If they couldn't have the heart to see that I was a hard-working young woman even with a disability they were not the type of people I needed to be around. I felt forced to leave my job and my time in the city ended. I was so upset, but I had my family’s support and they helped me through the next few months jobless. They were worried that the stress would make me even more ill.
After some time I picked myself up and thought about what I wanted from life. I am a very ambitious person and very creative, and being off work I had time to reassess my life. It was actually a very close family friend that suggested I go back to college and express my creative side and learn new things; have some fun with my life with no pressure, so I did, I went and applied to be put on a beauty therapist course at my local college.
I got a place and at first I was really settling in well. Although I was in pain every minute of the day, and couldn't actually do some things for myself, I kept on fighting as I didn't want this life. I didn’t want my disease to win.
College went on for the next 2 years, it was a very challenging time for me but I wanted a full qualification and I wanted to achieve something to show other sufferers they can do it too!
I found myself in a very different life being at college with a 'disability', I wasn't normal to other people and I sadly believe that you are not accepted at all. Unfortunately I had experienced discrimination in my work place and now in my college. On many occasions my teachers made me cry as I was told I would ‘never be any good'. This was after I had completed a full-body massage on someone! I had no support what-so-ever from them and I felt nothing but sadness the whole time, as if it wasn't bad enough living with the disease! I am sure on a few occasions people really did not believe that I was ill. I had students and teachers roll their eyes at me. One lesson was in body electrical treatments and I think it’s quite obvious why I couldn't have this done to me, but I continued and tried with no fuss as I wanted to fit in and be normal. I found it really painful on my joints and the pain was unreal but both student and teacher rolled their eyes and told me 'it doesn't hurt'. This is the kind of ignorance I would like to address so that we don't have to go through this. It’s hard to deal with. This went on for 2 years.
I made no friends at college, in fact when I went back to college for my 3rd year it actually got worse! This time with the pure horrible sides to some students really showing through. I pretty much kept myself to myself and spoke to no-one. It was the best way. I go through life telling no-one about my illness and keeping it all to myself. They think I have nothing wrong with me so I just go along with it! It’s sad to say that some people that you get close to and think you can trust turn and use it against you. It’s sad, but I am learning a huge lesson.
Between my 1st and 2nd year at college I was in hospital 3 times. One of them was a cough that just turned really bad due to my immune system being so weak. I was then sent into hospital for the second time with campylobacter in my bowel. This was the worst one as it was around the time of the 'swine flu' epidemic. I was actually given swine flu tablets which was so scary as I knew I didn't have it but the doctors did not have a clue what was wrong with me. They eventually put me in a room all by myself on the cancer ward, so I was in a very safe place not to catch anything else, whilst my immune system was so low. I was kept there for a week, not being told anything. I was kept on a drip the WHOLE time as my lack of fluid was dangerously low. My blood pressure was monitored every few hours as it was dropping very low. It was a very horrible experience for me and it made me realise that I can NOT carry on like this for the rest of my life. I was far too young!
Once I had come out of hospital I felt very down. Apparently you get that when you are finally out of hospital, after experiencing all the things I had been through. Enough was enough, a part of the old me came back again and I felt the need to fight this disease hard! I made a really big decision to stop all medications as it was clear to me that they were not helping me at all, in fact suppressing my immune system so much that I was becoming more ill and was suffering with more awful things than I needed to. It was such a scary choice to make, stopping the medication that is supposed to stop me becoming deformed in the future. My honest view on it all now is that I would rather live some sort of quality of life now while I am young than to be in and out of hospital. No doubt I have that to look forward to when I am older so I am not prepared to give up yet. So I researched into alternative and healthy lifestyles. I contacted a nutritionist who helped me with my diet. I also started to do Yoga, where I practiced once a week to help me with my mobility. I would highly recommend other sufferers to try this as it was the start of a better life for me. I also take fish oil and pro-biotics, I have a special heat blanket to lay in on a regular basis, this helps me by using heat from infra-red rays. On my last visit to the hospital my inflammation level was the best it has been, so even though I received no positive help from my consultant about coming off the medication, hearing this confirmed my decision was right for me.
I started my new life by getting up every day and working on my own beauty business from home. It was so small that I was literally working beauty treatments on my mum and nan and building it from there. Soon word of mouth spread and I was doing friends of my mum and nan. I took a further course in nail technology and spray tanning, then out of the blue my business grew! My confidence was boosted and I was shocked at how much I took to the business side of things and how good I was at it. Every day my mind was on what I can do to become better. The real ambitious side of me came out and it feels great! I then found myself doing my nails and spray tans on a daily basis. Being of ill-health I wanted to go into something where I could offer healthy alternatives, so I offer healthy nail-care but with designs that are out-of-this-world and spray tans that are full of natural ingredients. So I try to get people to stay away from sun beds and fake nails. I am a fully qualified beauty therapist and have also completed my NVQ in hairdressing. I have a treatment which uses paraffin. This was a huge help to me on my hands and feet, for relieving some pain. I would love to do this for other RA and all arthritis sufferers! It’s lovely!
Although things are starting to look up for me, I am constantly reminded of what I have to live with, the pain is there 24-7 and sometimes I just have to stop and rest my body as it really gets too much for me. That’s something that makes me so upset and angry as I just want to succeed and get on and really at my age I should have loads of energy.
I cannot believe I am about to say this .......but I am now a celebrity nail technician. I have a huge celebrity following on twitter and I am in high demand for my work! Business is going just how I imagined. I am going to be on my local radio station, a local magazine has approached me to have a beauty blog in their magazine. I have worked on the stars of TOWIE, I have had the pleasure of meeting and working on the nails of Nicola McLean, Nathalie Emmanuel (Hollyoaks), Danielle Brown and Melissa Walton. I have many more celebrities lined up and I cannot wait to see what the future holds for me! I have made all this happen out of utter determination and will-power. I will NOT let RA spoil my life, in fact sometimes I think I was given “Arthur" (my nickname for RA) for a reason!!!!!!!
I am telling you this because I want to show everyone that despite what I have been through and what I live with every day, I am living my dream and so can you.
Thank you
Loretta Sophia xx