My Relapsing World

by amanda jones

Life sends us such valuable lessons. Having journeyed through pain since childhood I found myself experiencing increasing joint pain, especially in my knees at first. I had enjoyed a brief respite in my pain after a hysterectomy to help my endometriosis (it is not a cure) and suddenly found an urge to walk further, as the avid explorer and adventurer I am at heart.

Never one to give in I tackled badminton with flexibility and hockey with a new lease of life. But, the smiles which shone hid the pain I experienced. Distraction from pain is a great helper but I was guilty of pushing too much, working too hard and pretending I was OK. I’d had to since school as ‘period pain’ had taught me that what I was experiencing was ‘normal’ and ‘to be sucked up’. Blaming myself for not being able to cope like most people I held on to guilt, shame and anxiety. It wasn’t until I knew I had endometriosis that I forgave myself.

So, when I recognised that this new pain was worsening and the over-the-counter painkillers were becoming more and more frequent I sought help. Recently bereaved it was a tricky thing for me to pursue as I re-entered the world of hospital consultations; one I had hoped I had left behind.

Living through and looking at my symptoms as a patient, I put them all together. Doctors were adamant to treat each one separately. They were strange symptoms and seemed to come and go. With a background of persistent joint pain, I experienced red ears (which in my case split and didn’t involve the ear lobe), worsening joint pain, rib pain (costochondritis), frequent nose bleeds, a hoarse voice which felt like I was getting a cold but didn’t materialise and severe pain in my coccyx. Yes, my backside; what on earth?

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The last symptom suddenly joined the others and stayed with me for a good solid five years before I found relief with diagnosis and treatment. The coccyx is something we are not aware of until it hurts and what do we do to relief pain in our joints? Naturally, we sit down, rest our legs, lay down and sleep, but now this extra pain in my coccyx even prevented that being comfortable. Part of me laughed! Part of me cried!

I would have three weeks of a ‘flare’ of worsened symptoms then two weeks off. This went on for eight years. After an ear biopsy to rule out skin cancer, various rheumatology appointments where eventually I was sent home, being told there was nothing wrong with me, but to have ongoing steroid injections, something ‘clicked’, and it wasn’t my joints.

Before being discharged one of the locum rheumatologists I saw (before he left) had thought he had found the answer and I had a copy of the letter! Within his professional wording was ‘possible Relapsing Polychondritis’. My GP was not keen on giving me long term steroid injections without a diagnosis and it was only discovered that steroids worked after I survived a nasty bout of bronchitis in hospital where I was given a course. Here, I found that they also miraculously alleviated all of my other symptoms.

Google became my friend and then Facebook became even friendlier. Society has changed to value patient self-care and times were amenable with a little research and patient experience. Discovering a wonderful Facebook group about Relapsing Polychondritis I was contacted by a lovely lady who has helped me and others ever since. She suggested that I contact the Professor in London who studies Relapsing Polychondritis. I did and he replied! My GP was amenable for me to have a second opinion and I was successfully referred and my diagnosis was confirmed.

Now, two years on, my condition has progressed, but I have a treatment plan and medical team. The funny thing was that the locum rheumatologist who first mentioned the disease was trained by the wonderful Professor who diagnosed me.

So, what about this life?

Pain is my downfall and I have been to rock bottom several times. I am a positive, live-in the moment person but sometimes the distraction techniques don’t work and when I flare beyond the capabilities of my medication it can be devastating. The pain I experience is like red-hot pokers being stabbed through your joints, through your knees, ankles, toes, fingers and then the vice-like, red-hot squeeze around your ribs as they flare. It hurts every-time you breathe. I sit down to rest and my coccyx kicks off. What am I to do?

When the pain gets that bad I have been suicidal. Please, call for help, I have learnt to now. I have the Samaritans number saved in my phone. Is it depression? It’s a form of depression created from a helplessness when pain gets too severe.

So, what about this life?

I love my life. Disability has brought me into realms where little things are noticed. Gazing out of my window at the sky, watching the clouds, feeling the rain, relishing the sunshine; all mean so much more. As a nature lover it’s easy for me to appreciate these things but where once I dashed hither and thither in my busy life, cramming everything in now I stop to think, to stare, to appreciate. Regardless to disability, pain or illness I think that’s how dreams come true.

Dreams are where I started as a child. Life got in the way. Dreams came back when life became more meaningful. So now as I continue to be busy I also stop, just for a second, to look up and say thank you.


Amanda’s books are available from the links below through Missy’s Matters and through Kindle. You can find more from Amanda and Missy the dog on her social media channels to keep up to date with herwork.

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