When I had to change my shoe choice I knew things were bad. I love heels; kitten, sling-backs and wedges were my go-to for work. I walked for miles, ran to arrest calls, clipped my way down corridors in 9 of the 14 hospitals I worked in. So when in 2009 I had to change to flats I knew something was wrong.
Annabel was learning to walk, she wanted to be on her feet all the time but didn’t have the balance or strength to stay upright without holding on to something - my fingers in the main. We played on the floor for hours and then would wander around for several more. So it was little wonder I felt the odd ache here and there. This was all part of the course, right?
My knees were particularly sore I remember, all the bobbing up and down was taking its toll. With my background being in paediatrics I found myself getting off the floor with what I recognised as Gower’s sign. Which is basically climbing your hands up your legs to get yourself up from a squatting position. It is a sign of muscle weakness. Were my leg muscles wasting away?
Of course I did nothing at this point. Usually by the end of the day everything felt good and I wouldn’t even give it a second thought.
Each morning I would wake up and instinctively open and close my hand several times. This felt good. A few weeks later though I would wince at the thought of having to move my fingers, they got locked in position it seemed whilst I slept. It took incredible effort to bring myself to open and close my hand as the pain was unbearable but thankfully short-lived. Sometime after I would wake in the night and find I had been crying in my sleep, jumping in pain as I moved my hands.
It was only pain though and disappeared within minutes of waking. As soon as Annabel was walking I convinced myself it would all settle.
It was around this time my feet started to ache, but only when I put my shoes on and walked for a few minutes. Then it eased off. But I remember it intermittently coming back if I stood for awhile on ward rounds and due to my muscle weakness climbing the stairs to the ward I worked on was trickier than it should be.
Things seemed to move quickly from here with the pain and stiffness in my hands lasting longer. My grip strength in the mornings was awful so I couldn’t hold a kettle – this combined with ditching my beloved heels was the day of reckoning! I couldn’t change Annabel’s nappy, pick up patients’ notes if they were in a trolley, wear clothes with buttons, everything seemed to be an effort and yet it was the lack of heels and my morning brew which pushed me over the edge!
I realise my journey from here on in is far from typical. I was incredibly lucky to find myself in the right place at the right time. I had just finished a set of night shifts and the registrar I was working with was specialising in rheumatology, we bonded in ED over coffee regaling tales of our children’s antics as she too was just back at work from maternity leave. So on said day of reckoning I paged her, tearfully saying “I think I have arthritis”. We met in the junior doctors’ office that lunch time where she examined me, took my bloods and gave me an intramuscular injection of steroids. She told me I almost certainly had rheumatoid arthritis, most of my joints were inflamed, with fluid palpable within them.
Due to both of our work commitments the meeting was brief yet filled with care, concern, just the right amount of information was imparted and treatment was given. She was amazing. I remember walking away fighting back tears. I was running late for the lung cancer clinic which the respiratory team had specifically asked I attend despite doing a gastro job at the time. I slipped into the meeting at the start, I didn’t tell anyone. So many emotions were coursing through me at this point – I knew my diagnosis weeks ago but didn’t want to deal with it, I simply didn’t have the knowledge to know how things were going to pan out. But at the same time I felt embarrassed. I was in clinic with oncologists telling patients they had lung cancer. I simply had sore joints, something so trivial in comparison. Not to me but I could see the bigger picture. If I felt the bottom had fallen out of my world with this then how must the patients before me be feeling? My heart ached for them, for their families and for myself. I will never forget this clinic.
When I got home that day I was pain free. The steroid injection was magical! Words don’t do justice to the feeling of being free, no thoughts needed before executing simple movements and tasks. It was incredible.
Over the next few days I proceeded to do all the things I tell patients not to - I googled, I went on forums, I read about people with disabilities, those who were wheelchair bound, all quality of life gone. And I panicked. It took me a couple of weeks to rationalise that these were worst case scenarios, people vying to be King-pin in some of the forums. So I made sense of it in the best way I know, I wrote articles myself for arthritis magazines, trying to change the tone. There are after all two sides to every story. Everyone deserves to hear them both.
I started on sulfasalazine, the drug which makes your urine orange but a game-changer if it works. It took 3 months to kick in but was my wonderlust. Whilst it started to work I needed another steroid injection to keep things at bay, this time done in the rheumatologist’s daughter’s bedroom the day before Annabel’s first birthday. Like I said I was so fortunate, I had someone incredible at the end of the phone who bent over backwards to make sure I was ok. I have seen her since and thanked her, but that doesn’t seem anywhere near enough for what she did for me. With kindness, compassion, sincerity and a fair few hugs along the way, she made the sun-rise, patched me up and sent me back out to play.
During pregnancy a woman’s immune system changes in a highly orchestrated way and it is not uncommon following delivery that it may not settle back into its pre-pregnancy state. Auto-immune conditions are common in the first few months following delivery. The immune system not switching itself back on in its entirety with the body effectively attacking parts of itself not recognising it as its own. Whether this be rheumatoid arthritis, lupus, multiple sclerosis, hepatitis or thyroid problems, the conditions are many and the symptoms often severe.
So what happens to your auto-immune condition when you get pregnant again? It gets better, largely but with all things this doesn’t hold true for everyone. With the changes again to our immune system and the natural steroids we produce to support the baby, symptoms often reduce. Sadly once the baby is born they do return, often with a vengeance.
I gave birth to Alex, 2 years after Annabel. I stopped my medication and had a couple of steroid injections during pregnancy with flare-ups, but after 20 weeks all my symptoms subsided, I felt good. Staying off medication to breast feed but aware with the slightest niggle I would restart as it would take 3 months again for the meds to kick-in, this time I had been advised to start methotrexate in addition to the sulfasalazine.
But the day never came.
My symptoms didn’t come back.
My inflammatory markers, x-rays are normal. My immune system reset itself.
I am beyond lucky. The human body really is the most incredible thing.
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