‘The Show Must Go On’

After seeing Rheumatology, it was a whirl wind of referrals, tests after tests – I’m surprised I had a blood left to be honest! However, I was in for quite a shock with multiple diagnosis’ all of which impacted on the other!

In November 2019 I was diagnosed with early onset Arthritis which was already in multiple joints, I have Degenerative Disease of the Disc/Spine in C and L spine (and now it’s spread to my T spine), I had a congenital hip disorder which meant that the bones in my right hip hadn’t stopped growing when they were supposed to, so the femur head was completely surrounded by bone from the socket. The only solution was a total hip replacement! I was 39. They also diagnosed Fibromyalgia which I’d never even heard of but the symptoms fit too well. The all over body pain on top of the joint pain, the fatigue, brain fog – it all fit. I would later find out I had probable ME/CFS too but that’s another story.

The NHS was really quick with supporting my Fibro, I attended an 8 week course on living with the condition, do’s and dont’s, pacing (which I’m not great at) and looking after yourself. It was really helpful but didn’t provide the long term solution I wanted – there just isn’t one!

With the hip I had to wait 2 years before I had a much needed hip replacement. Through no fault of the NHS – Covid 19 pushed everything back but my consultant has been superb. He did my hip replacement in Oct 2021 and the recovery was harder than I ever imagined – likely to do with my other conditions but it was 5 months before I could fully mobilise and still then needed a stick. I had a few post surgery complications which made things trickier.

Speaking of post surgical complications on Dec 28th 2019 I developed a hacking cough and over the next few days would become extremely unwell. I was rushed into hospital on 1st January 2020 with a double pneumonia which turned out to be Pneumococcal Pneumonia.

The respiratory team were really good as they struggled to understand why I was so poorly. They tested me for everything you can think of! They just couldn’t understand why at 39, with pretty health lungs – I’ve never smoked, why I had double pneumonia and where it had come from. Covid 19 wasn’t officially in the U.K. until Jan 23rd - I disagree but ……. Anyway my lucky escape from the pneumonia left me with plural scarring and a granuloma on my R lung. It also left me with much more severe asthma due to the lung damage. However, the story doesn’t quite end there! I was on antibiotic for 10 days after leaving hospital. Exactly a week after that (Wednesday) I phoned my GP to ask for more antibiotics as I was feeling unwell again and was worried the pneumonia hadn’t fully cleared up. Little did I know that this would actually save my life! Over the next few days i became more and more unwell. By Friday, I was sat in the hairdressers looking like death and feeling like death. 5am Saturday morning, I woke up with a pounding head, the crack of light shining through the curtains was like a drill pounding away and my neck was stiff, I had a raging temperature too, by this time I knew exactly what was wrong. I got dressed, drove myself to ED and within 20 mins was hooked up to multiple drips and machines. I had Pneumococcal Meningitis – a rare complication of the pneumonia. Thankfully having started the oral antibiotics from the GP I had slowed down the meningitis. 36 hours later I had the telltale rash. Had I not trusted my instinct that I had meningitis and waited, I would be unlikely to be here today telling my story. However the time I spent in hospital in Jan 2020 slowed down my recovery from my hip replacement. I eventually went back to work on 3rd March to my nursing role working with children with complex health needs in school and by the 17th I was working from home due to my vulnerability to COVID. I never fully returned to this position as I got promoted to a Band 7 Safeguarding Specialist for Health. I would continue working from home until well into 2021/2022 when things picked up for a while, I changed jobs again, working back in the hospital environment, setting up new pathways and services to support our Armed Forces Community in line with the Armed Forces Covenant and the Armed Forces Act 2021. For around 18 months, although I still had bad days and good days, they started to equal out some and I was doing a job I loved. Then the bad days started with a vengeance in March 2024 starting with fatigue and brain fog like I’d never before experienced, becoming incredibly stressed at work as the chief nurse announced I was being made redundant eventually leading up to a life threatening asthma attack in June 2024. Again this all led to some serious life changes.