In the Face of Adversity

I usually enjoy writing an end of year blog post, but I found it difficult this year.

The last twelve months have been some of the most stressful, trying times of my life for reasons I can’t really share on my blog. (Although I am directly affected by the problem, it isn’t mine to discuss publicly). I will just say that ‘it’ has had a terrible impact and has soured almost every part of the year, which is partly why writing this felt difficult – because it seems dishonest to talk about all the good things whilst avoiding the metaphorical elephant in the room.

Regardless of the elephant, I have still managed to put myself out there and attempt to live my best life. And that is something worth sharing.

My 2019 calendar was filled with things to look forward to and enjoy, so despite the pitfalls that I can’t discuss, I still hold a real sense of accomplishment when thinking about the last twelve months.

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I have been to Paris, completed an escape room, seen three shows at the theatre, attended two weddings, visited Bournemouth for an evening out, enjoyed FOUR nostalgia-rich concerts and a local music festival, attended an LDUK conference with one the world’s top Lyme-treating physicians and the day after that conference I drove back into London to meet friends for lunch – that’s two trips to London in one weekend! Something I would never have done last year.

I had an absolute blast at London Film and Comic Con in July, and there was an abundance of time spent with family and friends throughout the year. We welcomed Rupert to the family in May and I cannot imagine my life without this cheeky and loving poochon pup.

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I spent a week in New Hampshire, which was both wonderful and a real test of strength… 💪

Other travel mishaps include an attempt to visit Prague, but I guess that trip just wasn’t meant to be.

My last big outing of the year was to Winter Wonderland with Royan and we managed to have a really great day out even if we did accidently walk the long way round to Hyde Park and then have zero sleep at a very expensive hotel!

So what else did I get up to?

I stepped down from managing LDUK’s public Facebook page, freeing up some much needed headspace and spare time. I finally swapped my car for an automatic to lessen the strain on my sciatica, and I completed a course of Cognitive Behaviour Therapy for OCD which reared its ugly head towards the end of 2018. I live with it daily of course, but sometimes it flares up and takes over. I’m pleased to say the CBT worked and the OCD is firmly back in its place. I own it, it does not own me.

If you’re in the Bucks area and struggling with mental health I highly recommend self-referring through Healthy Minds.

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I managed another term of choir, doing something good for my physical and mental health that I really enjoy. I wasn’t able to keep up with the last term of the year, but I do plan on going back in January.

I’ve spent countless hours reading, and watching film and TV. I signed up for a writer’s magazine subscription and I had a heavy edit of my novel-in-progress. I signed up to the Curable app to help manage symptoms and have found the science really interesting to listen to. If the idea that the mind can heal the body intrigues you then I recommend taking a look at the Curable app.

I made lots of progress at work and have never felt so professionally fulfilled.

On top of my normal duties, I have also taken on the role of leading the company’s Corporate and Social Responsibility Team which amongst other things, means planning lots of fundraising initiatives and organising activities for staff to take part in.

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The aforementioned elephant was the reason behind several health setbacks, and when coupled with the loss of Royan’s granddad in May and his dad in November, we’ve understandably had our work cut out for us. We have a handle on it now though and with a bit of luck, 2020 will be a smoother ride. We won’t be getting married next year as was the original plan, and we won’t be moving house anytime soon, but we can now address the elephant with the correct support and work out a way to move forward.

With everything going on, it’s not surprising that I wasn’t able to keep up with the gym, choir or actually writing my novel.

But that’s all in the plan for 2020.

Keeping active whilst living with the impact of late-stage Lyme disease is no easy feat. It takes a lot of meticulous planning and organising to ensure I’m pacing myself and keeping my head above water. Some things will slide, but prioritising is key. Learning when to say ‘no’ is also key.

I actually consider the fact that I am still managing a 30-hour work week to be a small miracle, so how I have also managed to enjoy so much of my spare time (whilst living with the elephant) is almost unfathomable. Especially when I think about how much time I have also spent in bed barely able to leave the house.

This year has taught me that I am capable of more than I thought.

It has made me believe in myself, it has opened my eyes to the possibilities that lie ahead and there’s no turning back now.

So what is Hyperbaric Oxygen Therapy and how does it work?

I have been attending the MS clinic in Aylesbury for hyperbaric oxygen therapy (HBOT). An NHS approved treatment where you breathe 100% pure oxygen under an increased barometric pressure to improve oxygen saturation. In the oxygen chamber, once you are hitting the max, the air pressure is around 33 feet below sea level. In general, the air we breathe normally contains 21% oxygen and the pressure level around you is dependent how far above sea level your location is. So HBOT provides a dramatic difference.

What are the benefits?
By increasing the pressure around you, oxygen is more effectively carried into the cells of your body. The benefits can include: Continue reading “So what is Hyperbaric Oxygen Therapy and how does it work?”

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August was a busy month, and it taught me a valuable lesson. As my doctor put it: my battery isn’t the same size as everybody else’s and it’s far less efficient.

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As per my previous blog post, I had visited Ireland for a wedding and put my best ‘healthy face’ on to enjoy the celebrations. I wasn’t well though and had to visit the pharmacy on the morning of the wedding. Later on in the day back pain arrived, and towards the end of the evening, a fever. But unless I had told you, you wouldn’t know. And this is because like most chronically ill people, I suck it up and keep going till I can’t go anymore.

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Waiting for answers

My MRI was back in June. June 17th to be precise. I was in the machine for 45 minutes whilst my brain and c-spine were being imaged.

Four weeks later I still hadn’t heard anything – I called the neurology secretary but there was no answer. I left a message but no one called back. Eventually around week five I managed to speak with someone.

I was told that my neurologist, busy man that he is, wouldn’t be looking at my results until the first or perhaps second week of August.

I wasn’t to worry because anything troublesome would be flagged and I’d have been contacted immediately.

Here’s the thing: a seven week wait?! Seven weeks? Even after he’s reviewed them I’ll be left waiting for a letter and a follow up appointment.

I have four more scans in the pipeline, a referral to an infectious disease doc and a lumbar puncture on the horizon. If there’s this long a wait in between things it’ll be a good 18 months before I’m receiving any kind of treatment surely?

Continue reading “Waiting for answers”

Neurology appointment 1

This time last week I had just had my first neurology appointment. I’d booked the earliest slot available (three months in advance), had chosen my hospital wisely, and had even researched the listed Doctors to ensure I was giving myself the best shot!

I arrived at 8am, was greeted by two very friendly staff members and then had a short wait followed by a 15 minute appointment with the Neurologist who was super helpful and informative.

I listed my symptoms, gave him a brief run through of my medical history and presented him with my test results. He asked a few questions and tested a few of my reflexes. My tremor was active, which was pretty impressive timing and definitely helped state my case!

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Me and Lyme disease: the short story.

Back in February, I was exhausted, ill and all out of patience. The last GP I had presented my troubles to suggested I seek counselling. She wasn’t even willing to discuss the possibility that something physical was responsible for so many seemingly unrelated issues (from migraines to muscle spasms, and some things you won’t want to read about).

So I took to Google with one of my more embarrassing issues and up popped Lyme disease. My mother had mentioned it earlier in the week so I started reading about it. It was all there. Every single problem I’ve had over the last nine years could be put down to Lyme.

“You’ve not been right since you returned from America that second time.” Mum kept saying, and she was right. One morning, soon after returning from New Hampshire in 2007, I’d woken up feeling like I’d been hit with flu, my face covered in white pustules and a thick oily slime. I was retaining water everywhere and had rashes on my elbows and knees. I felt hideous!

Continue reading “Me and Lyme disease: the short story.”