Tag: chronic illness

September Travels

Travelling is stressful at the best of times, but how do you manage when you have a chronic illness? I did everything I could to ensure a smooth experience, but you know what they say about the best laid plans…

Back in 2006 I went on a big adventure across the pond to work at a summer camp in New Hampshire. It was a transformative experience that helped shape the adult I was becoming and I built several friendships that have stood the test of both time and (mega) distance – shout out to Katie in Australia!

My last trip to Camp was in 2011, a full eight years ago. Since then many a thing has happened, including the worsening of health challenges, and as a result my confidence with travel has taken a blow… so much so that I turned down a trip to New York last April.

But an old friend passed away this year and his memorial was being held at Camp over a weekend in September. It was time for a visit.

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Lyme disease: Where am I at?

Ten years have now passed since the initial onset of my Lyme disease symptoms, and I’ve been on a learning journey since I discovered its presence early last year. Lyme disease and the complications that have arisen from it have monopolised my entire twenties; a whole decade of my life. But I’m finally treating it now so there is light at the end of the tunnel – it just happens to be a very long tunnel.

Receiving the right treatment from the NHS has been difficult; they are working with outdated treatment guidelines and a serious lack of Lyme knowledge. My GPs have been helpful in making referrals and doing what they can within guidelines, but I’ve had a nightmare elsewhere with unreliable consultants and insufficient appointment systems.

I did make it as far as the Infectious Disease Clinic at Hammersmith Hospital though, and was offered a lumbar puncture to look for Lyme antibodies in my spinal fluid.

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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?”

Untitled

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.

low-battery

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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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.”