Bubsell was in the habit of taking a nap in the morning and Mr Kindness would put her in her swing upstairs. He would be upstairs working in his study and then I’d call him to come down to carry her upstairs when she was getting tired. We would then both be ‘free’ to carry on with our personal tasks. On this particular day Mr Kindness dashed to shower just as Bubsell was stirring from her nap. Whilst he was in there she started crying was hungry. When I went in to see her, she started jumping up and down in her swing seat edging to come out. I unhooked her, picked her up and headed downstairs.
At the penultimate step I came crashing down and my first instinct was to make sure my daughter didn’t fall so I let my left knee and ankle take the hit. Luckily there was a large box at the bottom of the stairs containing Bubsell’s new car seat that I grabbed onto to break the fall. Bubsell was shaken by the sudden landing and started crying so all my energy went into consoling her. I brushed myself off and carried her to the kitchen. I did feel a bit foolish as Mr Kindness had insisted that I should always wait for him to take her downstairs especially during this ‘high dose of steroids week’ but me being as independent as I am thought I could carry her just fine – so I didn’t even tell him about this when he came down! Little did I know about the drama that was to unfold as a result of this ‘little fall’.
The following day I woke up early as I was to head to a local office to take a ‘keep in touch’ day as part of my maternity leave. I wanted some time away from home with clear headspace to clear my inbox and read up on current technical issues. I quickly made our dinner and my lunch and headed out to my car. I felt a little discomfort in my knee and ankle but nothing too severe. I drove fine and the day went well but I did realise I was hobbling when I walked around. Afterwards I headed to the house of one of my best friends for a coffee and a catch up. Whilst sat next to her and her young son on the sofa, he jumped off and knocked my knee. I was in agony – I thought ‘errr this is new – I didn’t notice this before?!’ but I carried on as ‘normal’.
The next evening we went to a local shopping centre where we had to dash from one end to the other before the shops closed to buy Bubsell’s baby food supply. My ankle felt really sore but again I carried on thinking it was nothing.
The following day I felt my knee was in agony every time I walked, or rather, hobbled. We had very good friends coming over in the evening for dinner. On a side note, Mr Kindness and I are known to be coffee shop fanatics and we made friends with this lovely couple at our local coffee shop – the wife a primary school teacher and the husband a doctor. There is a reason for telling you this as when they came over, I explained my woes about my lack of mobility and he advised me to see my GP about my knee. One other thing I remember from that evening was that the doctor friend kept pressing me on whether I’d had a formal diagnosis of my condition. I had to admit to him that I didn’t have a formal diagnosis – but gave him great detail on the medication I was on and all the things the neurologist had said. He didn’t press me further but left it that I did really need a formal diagnosis so the core of my condition could be treated not the symptoms.
The following day at my GP appointment after I gave a full low-down of my neurological ‘condition’, they examined my knee. The word ‘examined’ is used in a very loose way as I wouldn’t let them anywhere near it as one slight touch and I nearly jumped off the table in pain. They said they thought that it seemed likely that I had fractured my patella bone and advised I get an x-ray at the local hospital. “Why is my life such a shit-show?” I exclaimed – to which the GP ‘replied’ with a smirk and thanked me for coming in, meaning my appointment was over.
After juggling the logistics of a baby at home we managed to get out of the house early evening for the x-ray. We arrived at the small local hospital which we hadn’t been to before other than for blood tests. We had no idea which area to head to and as we’d arrived after hours there were few staff around, so we had to wander around (me: hobble!) before we finally arrived at the A&E reception. I gave my details and assumed they were expecting me as the GP had said they’d send an x-ray request. However they had nothing in the system on me – and said that I’d missed the time slot for a drop in x-ray and so unfortunately, I wouldn’t be able to get it done then. I pressed them and said I was in a lot of pain and needed this seen to – the discomfort of my knee was yet another great joy on top of my other issues!
Luckily they listened and asked me to wait in the waiting room. After what seemed like hours I was called for an examination, more waiting, then an x-ray, more waiting, and then a diagnosis. The medic told me that luckily I had not fractured my patella but it was very swollen and my ankle was equally swollen. I was advised to elevate both and put ice packs on. As soon as we got home I put ice packs on – and gave myself an ice burn on my knee – there was no winning!
My hands continued to be painful so I had to deal with that on top of trying to heal my knee which was impeding my mobility even further. I iced it, elevated it and rested it when I could and didn’t focus on my ankle. I tried to ‘suck it up’ and plough on. We were getting more confident taking Bubsell out to shopping centres and coffee shops, and I seemed to be walking ‘ok’ but did wince every so often. I was even taking her out on my own and we visited a local craft store, more coffee shops and even a garden centre taking lots of pictures for my upcoming scrapbook project.
At the end of February 2020 Mr Kindness and I had another in depth discussion about what our potential options could be to discuss with Eccentric-Neuro as it felt like we weren’t getting anywhere. I just felt awful – really fat with fluid retention due to the steroids, really tired all the time, really in pain everywhere, and up and down mood swings to cap it all.
It was a strange coincidence that at my next appointment Eccentric-Neuro seemed to be on the exact same page as us and agreed the plan going forward: to get a second opinion with another neurologist, to get another EMG (electrical test) and to stop taking the steroids at the earliest opportunity. They said it was dangerous for me to stop the steroids straight away so I had to do a step down of 5mg per week (from my dose of 40mg every day). They also advised me to start taking the vitamins again – those that they had said to stop before but I had continued in the hope that they were doing something good!
And so, I put this plan into action.