If you don’t like reading “personal journey” type posts… click away now!
In the news recently, you may have heard about Steven Frayne, better known as the famous magician ‘Dynamo’ and his public update on a recent illness he has been battling with.
He came out earlier this month, explaining that he has become “really sick” in 2017 due to a bad type of food poisoning mixed with Crohn’s disease, of which he has suffered with some time. Poor guy, it sounds awful.
As a result of this combination, he has developed arthritis, causing him so much pain that he can’t shuffle cards due to the pain in his hands. He has also been brave and bold enough to show the fairly dramatic change in his appearance, which includes a rash across his head and some apparent weight gain around his face due to the medication that he has been on.
Why am I sharing this with you? You might be curious to know, so I’m going to share my own personal experiences from the last six months.
I have been keeping a very low profile for the last few months and there’s very good reason for the odd cancellation of a preview night invite or bloggers event (as much as I love them, some days have simply not allowed me to make it), so here’s why…
In October 2017 I was diagnosed with Seronegative Reactive Arthritis.
What is Reactive Arthritis?
Reactive arthritis is a relatively short-lived condition causing painful joint swelling. It develops shortly after an infection, such a food poisoning, even pneumonia. In most cases, it clears up completely within 6 months causing no further problems. It can happen to anyone at anytime.
Common symptoms of reactive arthritis include painful or tender swelling in the joints, especially in the legs and feet, fingers and toes, although the wrists, elbow and joints at the base of the spine may also be affected. Men and women of any age can get it, but it’s more common in men, aged between 20 and 40. The body’s immune system overreacts to the infection and starts attacking healthy tissue (instead of helping it), causing it to become inflamed. The exact reason for this is unknown.
Where did this outbreak in me come from?
I have no idea, other than in February 2017 (Valentine’s Day to be exact) I went to a Little Comets gig (awesome band if you haven’t yet found them!) with the bearded one and I had come down that day with a very bad fever. I was burning up, but shivering so hard and felt so cold that the walk from our car to the music venue had my teeth clattering so hard together that I thought they were going to fall out, it hurt so much! But, as stubborn as I can be, I wanted to see one of our fave bands that night and I stood in the crowd propped up on Beardy P’s shoulder to stay upright. I felt faint half way through and had to sit at the back for the second half of the night, a nightmare V Day!
What’s even worse is that the very next day I woke up with mouth ulcers all over my tongue, probably 8-10 and felt awful. Later that day, after a trip to the doctor, they kept coming and by the next day I had near to 40 monster mouth ulcers (huge white ulcers, bigger than I’ve ever seen) over my mouth and tongue, I couldn’t speak, eat or swallow easily, it was agony and I had to stay in bed for a good few days. After that, my tongue was (and still isn’t) the same, still a little numb in places and very sensitive. It was bizarre and after various tests, the doctor couldn’t tell me what it was other than “due to stress”… I was about to buy my first house and other stresses in my life made that feasible, but it was a scary and very unpleasant experience.
When we moved into our new home at the end of May 2017, I thought to myself a few days before the big day that my ankle was sore and I worried that it might put me out on moving day, but all was ok… until the days/weeks after the move. I had, the previous year, fallen down some steps and badly sprained my ankle (even broke some toes!) on a night out, so I thought perhaps it was just a little weak from that incident. During the house move, my ankle swelled and I believed that I had sprained it again, keeping it iced and elevated and trying to treat it for some time. Over the summer it went up and down in various states of swelling, Beardy P also sprained his ankle (a beautiful shade of rainbow it was too) following a football accident, ouch. We were a right pair during the first few weeks of hosting house warming parties and welcoming friends and family over to help us with the DIY as we both nursed painful joints!
The following months started to show signs of improvement, my ankle got better, although still weak on some days, I strapped it up with physio tape and kept on moving. But, then my neck started to get sore and ache, my shoulder was stiff, even my knee started to feel like it was twisting maybe. Everything was hurting and I had no clue as to why.
My wrist started to swell and weird rashes started to appear up my arm. I considered it an allergy and took allergy relief tablets to take the red rash down, it worked so I thought nothing of it until my ankle started to swell and I could barely walk again.
Something wasn’t right.
I saw my GP and was referred to a bone specialist at West Suffolk Hospital, where I went for an Xray and MRI scan to check my ankle and make sure there were no breaks that might have been missed. In the meantime, I was also referred to a physio therapist at Newmarket Hospital (Rebecca was AMAZING) and helped me to stretch and exercise to the best of my ability (pretty much zero exercise happening by this point) and offered me a crutch to use on a bad day, teaching me how to walk correctly and climb stairs with it, she was super patient and supportive.
Nothing could be found through my scans, so they then pushed me over to the Rheumatology department to look into my blood and they mentioned the possibility of ‘arthritis’ which I almost laughed off initially… that was a disease my grandma suffered from, that wouldn’t be right, surely? I waited a fair few weeks and left it with them…
The deciding factor to push my GP and finally get seen / taken seriously was when I woke up one morning and I couldn’t get out of bed – my right knee had swollen so much you couldn’t see the knee cap (knowing now it was fluid on the joint!). Once I managed it, I then struggled to get dressed and get myself down two flights of stairs to the kitchen. By the time I got downstairs I was in so many tears and there was no way I was in a fit state to drive to work, so I got myself over to the GP in a very depressed state, shaking from pain/anger/frustration/stress and he pushed the hospital for an urgent referral.
I finally got some answers from my Rheumatologist. I was diagnosed with Seronegative Reactive Arthritis and we could finally look into treating this bugger of an autoimmune disease. I was put on a cocktail of steroids, painkillers and started taking a mild chemotherapy drug to help sort my blood out once and for all!
This was diagnosed in October 2017 and six months later, it hasn’t quite gone to plan.
I have had some nasty reactions to the medication, the side effects being as unpleasant as the illness itself at times. My skin started to itch and burn, almost tingling all over my body, even touching hurt me if somebody hugged me or playfully ribbed me – it was really painful and some days I just wanted to rip my skin off. Some days I was so sick I couldn’t leave the bathroom for quite some time, it was really unpleasant. The hormones have been everywhere, some days better than others – my fiancé is a saint bless him and I can’t thank him enough for his support through this from day one! As well as my colleagues, who help me with the odd hug if I’ve arrived at work in tears through the pain just getting to my desk, or carrying a much needed coffee to my desk if they know I can’t manage.
On a bad day (whilst enduring a ‘flare up’), I’m on a crutch to help me walk, I can’t dress myself, (needing help to put on my bra or even my socks), brush my hair or shower easily, even putting on my shoes or tying my boot laces is impossible) – I can’t walk far, so walking the dog has been a real painful mission and driving has caused me issues on a particularly bad day. My independence feels compromised and that’s hard to deal with – but, I will get better, I’m confident of it!
Weight gain has been a bastard! Water retention and steroid rash is apparently a common side effect. The term “moon face” is used a lot to explain what happens to your facial features whilst on steroids for a long period of time and I am currently hating any photo or reflection of myself, having this problem at the moment. I have even, on occasion, apologised to P for the way I look as I hate myself some days, bad as it sounds, I don’t feel attractive or good about myself, it’s very upsetting some days and I feel very self conscious that people are looking at me and judging me, making me feel worse than I already do.
This weekend was a scary example and it backed up my anxiety / fears about the way I currently look. I brushed past a family friend in the street and shouted out a quick hello to her as we passed. She stopped, examined me and couldn’t recognise me for a few moments, even admitting she didn’t recognise me for a second… I felt mortified and immidately felt that I had to explain why she couldn’t. I’m finding this really tough, but hopefully it’ll go away soon!
It’s changed the way I look and I have visibly put a lot of weight on around my face which has really got me down and feeling crap about my appearance – I’m not super confident on a good day, so this has really knocked my self esteem, it’s a horrendous feeling. I don’t like to moan and try to keep a brave face on, but some days I just look in the mirror and want to cry. Told you this was a personal journey post haha.
If you see me, I may not be on a crutch… that’s either because I’m coping ok without today, or it may be because I’m slightly embarrassed or don’t want to let on just how bad I am suffering. As a general rule, I try to keep a smile on my face, say I’m fine when I’m not, just behaving generally, well, “British”. I would like to say I’m getting better, but today, as I write this blog post, I’m at my most painful day, at my very worst, but I know it will get better once we’ve got the treatment plan on the right track!
The NHS team around me have been amazing, supportive from day one and the West Suffolk Hospital doctors and nurses haven’t fobbed me off, have fought hard and as quickly as possible to get me diagnosed and help to get me on a plan for recovery. The rheumatoid nurses have been at the end of the phone every time I’ve needed to vent about the pain or ask a question, they have been brilliant.
Here in the UK, we take our NHS service for granted, we really do. It’s very easy to vent about the negative experiences and feelings, but do we share enough love for the good work they do? No.
I may have had the odd wobble or moan at the bearded one about the wait between appointments as we try to get my medication balanced, or the route to a cure sorted, but in reality, they are moving as fast as they can and I am forever grateful of their help.
If I could wish for one thing this year, it would be to pour Dynamo the magician a cup of tea or coffee (or something stronger if the meds would allow it!) and bend his ear about this horrendous disease that seems to appear out of nowhere and affect our lives in such a damaging way. Steven – if you or your family are reading, it’s my treat (I will even throw in a wedge of homemade cake if you fancy something sweet!), just drop me a line with your favourite teatime treat and a date for the diary.
And to end my very emotional blog post (a few tears have been had whilst I write this, ugh!) I wish Steven/Dynamo a full recovery in the future and to let him know that he isn’t alone, no matter how isolating this can sometimes feel. He has inspired this blog post, I had kept fairly quiet until this point, so I can’t thank him enough for sharing his story and I want to let him know how powerful that Instagram selfie has been – thank you Steven, you’ve helped me to have a slightly better week, I needed this.
And a note to my family and close friends, thank you for the support you’ve given so far, I’m going to need everything you can offer over the next year or so whilst I get on top of this! I’m going alcohol-free to protect my liver whilst on all these drugs, so please don’t send me invites to pub crawls or beer festivals, it’s torture! If you are sick, please cancel on me/don’t see me, as my immune system is going to be shot on my medication and I don’t want to get any more ill haha. And if anyone fancies a spa break or a cuppa, I’m always open to some relaxation! “Miss Sue Flay” is well and truly back on it, reviewing and plotting plans, you haven’t seen the last from me, there’s plenty of travel and food reviews in the pipeline!
Thank you for your post-it must’ve been difficult to revisit some of the painful moments that you have been dealing with. I’m sorry to hear what a tough road you’ve been on for the last 6 months-sounds like it’s been a scary/surreal time for you. I’m glad that you have a name for what’s going on and a treatment plan is being worked on. I hope you’ll soon be feeling stronger and brighter. I am sure your post will be help other people to talk and share…Wishing you all the best -I hope that you get to have that cuppa with Dynamo!
Thank you so much Lisa, I hope it helps others to know they are not alone 🙂
Oh Sue, this was heartbreaking to read but your positivity and determination will get you through. Holding you and if you are coming to Florida come and have tea and cake with me. Love and healing hugs xxxx
Thanks Chrissie, hopefully catch up soon! We are headed to FL in august (gulp, hot, hot, hot!) but we have a strict travel schedule, as we drive from ORL to Chicago with stops in between, before heading to Lake Michigan then back down again… not sure when we would have time, but will make it to you in MT Dora one day I promise! xx
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