Ten years since my chronic diagnosis

Ten years since my chronic diagnosis

Ten years that feels so long, ten years of hoping I will improve, ten years of taking serious drugs with serious side effects. Ten years and somehow, I don’t feel I have progressed physically. I haven’t gotten better, but I am better at managing my condition and my life.

It all started with a toothache and a tiredness that sleep could not cure. The removal of all my wisdom teeth, three lots of antibiotics and numerous visits to the dentist later and I hear the words that I will never forget:

Something is wrong, you need to urgently see your doctor.

Thanks to my fab dentist (I am still with him now) that is what I did. But getting a correct diagnosis is not always as simple as seeing your doctor for some tests.

And so, several weeks of visiting my GP and having blood tests led to an emergency stay for two weeks in hospital. Then countless doctors and endless tests (you can read it all in my book if you want the full details), and I came out eventually with a diagnosis. The diagnosis of a rare disease called Microscopic Polyangiitis (later changed to Wegeners), a type of Vasculitis, and a large bag of drugs to take each day, it wasn’t the outcome I had expected. But it was still not clear. When one doctor questioned my issues, and another doctor proved me right, I learned valuable lessons. Ultimately, you must look out for yourself and find experts you can trust.

I have learned a lot in ten years, and maybe I have progressed more than I think. I have a team around me that I trust, I have some stability healthwise, and I have family and friends who understand that sometimes it is too much for me and I need to hide. But overall, I have a new life, one that wasn’t planned and one that is restricted in some parts. But I think it is a life filled with love and respect and the new version of my life is quite lovely; I think I will keep it, drugs and all.

It’s called chronic for a reason

After the diagnosis, I thought I could battle through, I thought I would win, I thought I was invincible. Unfortunately, I couldn’t win, and I was so far from invincible. Ten years on, I am still battling, visiting hospitals monthly, and still hopeful. I did not understand the words chronic illness… when a colleague asked me how I was managing, and I said it was still dragging on; his response floored me. He simply said, ‘well, it is chronic’. Such a straightforward comment, but it really hit home. Did I think it would just go away? Had I not believed that it would be with me for the rest of my life? Had I just ignored all this? Am I still ignoring this? I may try to forget that I have a severe illness; I try to prove it wrong, almost as though if I keep going, somebody will soon tell me it was all a joke and that I am ok.

This probably shows that I haven’t learnt much in ten years, my silly illusionary mind.  

Recent events

The last few years have been tough for us all. Covid changed many things. For me, it was like a strange clinical trial; I got to remove all the travel and interactions with people and see what happens to an immune suppressed person with an autoimmune disease. The lack of infections allowed me to drop my steroid dose. It allowed me to work alongside colleagues as equals and not as the odd one not physically in the room. It meant I had the energy to be with my family. The world became as restricted as I have been;  it levelled the playing field.

Not anymore. As the world becomes ‘normal’, I become abnormal again, and the pressure to join in returns, a number of common infections, and my steroid dose goes back up. So, it has been like one large clinical trial that has given me a resounding answer to some of my problems. But solving these problems is not straightforward in the real world where money exists. 

Thank you for all the support

The ten years have been tough, full of knockbacks and disappointment. But it has also been full of laughter, love and people who are very special.

My family have been amazing. Even if we do lots of shouting some days, when it matters, we are a tight unit, and we deal with everything together. They are my strength, and I wish I could repay all the support, love and kindness.

To the friends who came to the hospital with me or looked after the girls for me when they were little, to those who have listened to me cry and not make much sense, thank you. And a big thank you for the espresso martini nights; they were needed. And a special mention to all my online friends, since writing the book, the support from Instagram, Facebook and Twitter has been critical. You understand, and you are awake at the same time as me when I cannot sleep, and you know how scary and uncertain this disease can be. Thank you.

To my boss and colleagues, for all the encouragement and support, positive words, and understanding when I just couldn’t be in the room. You have been the most fantastic company for the last ten years.

And lastly, to my now two baby boys, George the black labrador and Burt, the cocker spaniel. You will never know how much you have kept me moving. The movement has helped me avoid diabetes, brittle bones, more weight gain, and depression. Our walks help me physically and mentally.

 

What the future holds.

Unfortunately, the drug that has given me some stability, Rituximab, has now caused the doctors to think it has brought on Ulcerative colitis, another autoimmune disease. This one affects my bowel, more inflammation, more new investigations, possible new drugs, and another thing to learn to live with every day. But I will manage.

The ten years of drugs have caused side effects, from osteoporosis in my back and hip to steroid dependency and weight gain that I cannot move. The fatigue is constant, and when I get to the end of a working day, I am lucky if I can speak to my family. I keep going.

I am proud of how my family and I have dealt with this life-changing diagnosis; I am proud of our resilience and fight. I am so proud of how my children view this world, with a kindness, and I know that they will make a real difference as they turn into extraordinary young ladies. Vasculitis forced me to step back, look at my world, and focus my energy on the places that really mattered.

For now, I celebrate being alive, and I thank all those who have helped me to stay that way. It was not so long ago that a diagnosis of Vasculitis would be an immediate death sentence. Instead, I am grateful for the clinical advances and the care I have been given.

And now can some genius, please invent a cure?

Jx

Jane Edwards is the author of ‘Chronic Illness: Learning to live behind my smile’, a book about learning to live with a rare, invisible chronic illness.

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