Clare
Next in our ongoing patient interview series ‘Your Behçet’s Stories’, Clare told us about her journey to diagnosis, her experiences in the Army, how she uses exercise to improve her mental health, her passion for disability sports and much more! Thank you so much to Clare for taking part and if you’d like us to interview you too, you’ll find all the details at the bottom of the page.
Clare is 46 and lives in Oxfordshire with her daughter Chloe. She was diagnosed with Behçet’s in 2012 when she was 38, but had experienced symptoms since her mid to late 20s. Prior to the birth of her daughter in 2002, she served as a Combat Medical Technician with the Royal Army Medical Corps. During her service she did a 6-month tour of active duty in Kosovo, witnessing first-hand, some of the horrific acts of violence afflicted on the Kosovo Albanians and as a result suffers with Post Traumatic Stress Disorder (PTSD). After leaving the Army she worked in the fitness industry. She also enjoys cooking, baking and cake decorating, card making and more recently bottle art.
When and how did you get diagnosed with Behçet’s?
As a child I suffered with joint pain and recurring bouts of tonsillitis. At the time doctors told me the joint pain was due to growing pains and tonsillitis was just one of those things. Not long after my daughter was born, I started feeling tired all the time, lacking energy and at times my joints were really painful. I just put it down to being busy with looking after a baby, working part-time in the gym and the added stress of going through a divorce.
One morning in 2006 I collapsed at home, with excruciating abdominal pain and was taken into hospital by ambulance with suspected appendicitis. I had a laparoscopy of my abdomen and I was told I didn’t have appendicitis, but I had an ovarian cyst, which they successfully removed. However, I still suffer with abdominal pain when I have a Behçet’s flare.
Around the same time, I also started getting mouth ulcers, 10 or more at a time. They were usually around 2-4mm in diameter, but some were as big as 5-6mm, especially ones inside my bottom lip, which would bleed making eating and drinking difficult. My mouth constantly had a metallic taste, which made me feel nauseous. I did my best to stay strong and be the best Mummy I could be, even though I felt so unwell.
Things got really bad in 2009/10. I started losing weight and it felt like everything I ate either came back up or had me dashing to the toilet. I was going to see my GP so often that I joked that I had my own seat at the surgery. My GP was baffled by my random symptoms. I was referred to the gastroenterology team at the John Radcliffe Hospital in Oxford, where I underwent numerous blood tests, and endoscopy and colonoscopy procedures. It was at that point I was misdiagnosed with having Crohn’s Disease. Because blood tests showed my C-reactive protein (CRP) level was through the roof, I was prescribed Prednisone and Azathioprine. I went from a healthy 65kg down to 40kg within a matter of weeks, so I was referred to see a dietician, who put me on an elemental diet (a liquid diet) for 8 weeks, allowing my digestive tract to recover. The hardest part was introducing food back into my diet. I started with easily digestible low-FODMAP foods, whilst I was weaned off the elemental feeds. As soon as I reacted to a particular food, I had to give my gut a few days to recover from the upset and then try another food. It was a long process, but in the end dairy products, wheat and gluten were found to be foods I reacted to and would need to avoid. I remained under the care of the gastroenterology team until my colonoscopy biopsies were found to be inconclusive and the diagnosis of Crohn’s Disease was withdrawn.
Unfortunately, because the diagnosis was withdrawn, so was the medication which had massively improved my symptoms. Over time I started to get more unexplained symptoms, including worsening joint pain and stiffness, nerve pain, which felt like I had pins and needles one minute and stabbing pain the next, all over my lower legs. I also developed problems with my balance, feeling as though my legs would give way, as well as skin rashes, ulceration, chronic fatigue, migraines, brain fog and genital ulcers. When I had the first episode of genital ulcers, a GP (not my usual one) told me this was likely to be herpes and I was sent off to my local sexual health clinic. After having biopsies taken, I was given antiviral medication and pain relief cream. The biopsies confirmed I was clear of all sexually transmitted infections (STIs), which deep down I knew would be the case, but that also meant it was back to the drawing board regarding a diagnosis.
It was my regular GP who initially put the pieces of my medical puzzle together and referred me to see the rheumatology team at the Nuffield Orthopaedic Centre in Oxford, where the diagnosis of Behçet’s was confirmed. I was put on Colchicine and Azathioprine initially, which seemed to control some of my symptoms. It wasn’t until 2014, that I eventually got referred to a Behçet’s Centre of Excellence.
How has your treatment and care evolved since being under a Behçet’s Centre of Excellence?
My treatment and care since being referred to the London Centre of Excellence has improved massively. When I attend clinic, it doesn’t really feel like I am going to a hospital appointment, because the whole team are so friendly. I don’t mind that clinic visits can take a few hours because I get to see more than one specialist doctor and the time goes quite quickly.
Bridie, the receptionist, presents me with the dreaded clipboard which has questionnaires to fill in, which gives the team an overview of how symptoms have affected me over the last four weeks. Jean, the support coordinator, is usually available to chat to. She has been amazingly supportive and helped me when my Personal Independence Payment (PIP) claim went to tribunal.
I very often chat to other patients too. As much as I wouldn’t wish Behçet’s on anyone else, it is lovely to meet and chat to others who have it too. All of the doctors are really lovely. They all take the time to explain things in detail, which has given me a much better understanding of my condition and medication. If I have a particular problem, I can contact the team via email and someone will usually reply in a few days. I am so grateful to be looked after by such a fantastic team.
We know you’re very keen on fitness and sport. How has exercise improved your mental health?
Having worked in the fitness industry and served in the Army, being physically fit has been hugely important in my life. Being able to go out for a run was my way of letting off steam. I especially loved running on a cold frosty or damp, wet morning. Feeling the cold air fill my lungs set me up for the day ahead. When my joint and nerve pain meant I was no longer able to walk unaided, let alone run, my mental health took a nose dive. I would get angry and frustrated just seeing someone else out running and think ‘why me?’. It took a long time for me to turn my mindset around and be able to think positively towards exercise and keeping myself as fit as I can.
I suffer with Post Traumatic Stress Disorder (PTSD), which causes nightmares and flashbacks, and I approached Help for Heroes for support. It is probably one of the best decisions I could have made. Now I might only have a nightmare maybe once a week, but flashbacks can happen out of the blue so have been harder to get to grips with, however I have coping mechanisms I use to ground me.
How have you adapted your exercise routine since your Behçet’s diagnosis?
Due to the effects of Behçet’s, I need to use crutches to walk short distances and to get around at home, and I use a wheelchair for longer distances. My fitness routine has had to change considerably. I have learnt that being an independent manual wheelchair user requires good upper-body strength and I like to be as independent as possible. Having said that, when my Behçet’s flares up I often feel too weak to be independent.
It was the sports recovery team at Help for Heroes in Tidworth, Salisbury, who opened my eyes to disability sports and prior to the Covid-19 pandemic, I attended a number of sport camps organised by them, including archery, handcycling, wheelchair basketball, wheelchair rugby and kayaking. Just because my legs don’t work in the way they should, doesn’t mean I can’t keep fit and play sport.
I got hooked on archery and Help for Heroes very kindly organised a grant for me to get an intermediate bow, which I am really grateful for. I also found I enjoy handcycling and am extremely lucky to have been gifted a semi-competition handcycle by an ex-serviceman. It also came with a training roller, which works in a similar way to a turbo trainer.
During the Covid-19 pandemic I was put in the clinically extremely vulnerable category, so I decided that if I wanted to maintain the level of fitness I had worked so hard to build up, I would set my handbike up on the training rollers and train in my back garden. I got myself a bike computer and I then set myself distance goals to gradually build the miles up. I use a virtual cycling app called Zwift which means I can ride virtually with friends, which is really good fun.
I also include abdominal work in my fitness routine to maintain a strong core, which in turn compliments the cardiovascular training I do on my handbike and helps me keep a good posture when I do archery. I do crunches using a fit ball, because the problems I have with my lower back means I am unable to do conventional crunches without being in a lot pain and discomfort. I have a dumbbell and barbell set which I use to maintain my upper body strength and I include exercises that specifically work the muscles needed for archery and propelling myself in my wheelchair.
What is your proudest achievement when it comes to sport and managing Behçet’s?
This has got to be taking part in the 2020 Bike for Behçet’s, Run for the Rare challenge. The original challenge was to cycle, handcycle, run or walk 226 miles in 13 weeks, which is the distance between the three UK Behçet’s Centres of Excellence. I decided to challenge myself to double the distance and aim to cover 452 miles. I actually clocked up 904 miles, all without leaving my garden. I am really proud to have been part of the team and of the absolutely amazing amount of money we collectively raised. The day I reached my first 1000 miles was also a massive achievement.
Through Help for Heroes l have applied to take part in the 2021 Warrior Games, which is due to take place in Florida. If I get selected, I would like to compete in recurve archery, handcycling, wheelchair basketball, wheelchair rugby and possibly wheelchair racing.
What advice would you give to someone diagnosed with Behçet’s?
One of the things I do to avoid over-doing it, is to have a rest day in between training days, so as a general rule I only train on a Monday, Wednesday and Friday. It is important to listen to your body and rest if you need to. Living with Behçet’s can feel like wading through treacle, whilst wearing lead boots. I have a schedule where I do certain house chores on certain days, for example I change and wash my bedding, and clean my bedroom on a Monday. It might take me all day if I am not feeling great, so I break the jobs down and rest for 15-20 minutes in between each job.
Eating healthily is also important. I do a weekly meal plan, in which I can make sure I am getting a balanced diet, it also means I only buy the food we need for the week. It is surprising how much money I save on my food bills as well.
Another tip I have learnt along the way, is to always have at least a week’s worth of medication on standby in case there are any issues with next month’s medication. The pharmacy team put most of my medication into dosset trays for me. There are a couple that have to be kept in the packaging until l take them, but having the majority put into dosset trays makes it easier to ensure l am taking them correctly. When l start my last dosset tray, l call the pharmacy to check they are in the process of dispensing next month’s supply. I am very lucky as they deliver to my home address, which means l have one less thing to worry about.
Thank you so much to Clare for answering our questions!
Interview published 25/03/2021
Could your story help others?
We would like to share your personal experiences of diagnosis and living with Behçet’s, and we’d like to hear from a wide variety of patients, of all ages and backgrounds. We’d also like to hear from carers and/or family members of those affected by the condition.
If you’re a patient you might have some particular tips for managing your condition day-to-day that you would like to share to help others, or you might simply like to tell us your story of diagnosis or about a recent fundraising event you’ve been involved in. If you’re a carer or family member of someone affected by Behçet’s, you might wish to share your personal experiences of caring for someone with a rare condition. You can share as much or as little as you want with us.
If you are interested in taking part and would like to know more please email Deborah at info@behcetsuk.org
We look forward to hearing from you!