Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Archive for the ‘June 2016’ Category

When I Was bitten By A Dragon…

Yes that’s right Dr, at the tender age of six I was bitten by a mythological creature. Within six months of this terrifying beast having a chew on my thigh you diagnosed me with M.E. You had exhausted all other diagnostic criteria. Not once did you consider that something so dramatic as a dragon bite may have occurred. Had you have taken a thorough medical history maybe right from the start you would have suspected Lyme Disease, perhaps you would have treated me and cured me of this hideous illness straight away. But how silly of me. You are a Dr, you do not deal in the likes of maybes, possibilities and mythological creatures; only cold hard facts, ones that fit nicely into your tick boxes.

Over the last 17 years do you know how many times your kind have uttered the words “It would appear you have X, but I am unsure because you just don’t fit into any of these boxes exactly!” Since when did the boxes become so rigid and unadaptable, are we not all unique individuals with our own mix of conditions that affects us all in varying ways? If as people we are so unpredictable in the way a condition may manifest, why then are your boxes so unforgiving. Only Monday of this week the Dr sat there trying to decide whether to diagnose me with inflammation of the optic nerve in both eyes or inflamed retinas in both eyes. Frankly the lovely woman was lost, I had her quiet confounded. She could see plainly that I was rather ill, her barrage of tests confirmed that, but not one of them could put their finger on as to why. I sat there quietly next to my mother, both of us whispering “The dragon bit me 17 years ago, but you don’t believe in Chronic Lyme Disease.”

Now replace the word dragon with a tick. This small seemingly insignificant creature is known to carry, in many cases, Lyme Disease. A disease that more often than not will report a false negative during testing due to the lack of accurate testing methods available. Oh but a lumbar puncture would pick it up you say? Yes, it sometimes does, but my neurologist swears me away from it for fear of making my Dystonia worse. One hospital says we will give you IV antibiotics that you need to cure you but we will only do this if you have an L.P, another admits they are 100% certain I have chronic Lyme but their hands are tied due to regulations that are out of date and blinded with inaccuracies.

Chronic Lyme is often hailed as the Great Pretender. You only have to look at me to see why. Here I am in another flare up of symptoms, attempting to treat each one as it appears. Its distressing really, knowing that IV antibiotics would cure but regulations prevent this as I’ve had both positive and negative results. So in the meantime it’s a guessing game of what will subdue the next round of symptoms for now.

If only Drs believed in mythological beasts like Dragons and Lyme Disease.

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Swimming In Relief

The title says it all. I am filled with relief. I have spent the last week hardly sleeping, overthinking and consumed with dread at today’s hospital appointment. Good news for a change though. I do not have MS! The Dr was uncertain as to whether the issue with my sight is being caused by inflamed optic nerves or inflamed retinas, she’s leaning more towards the problem being with my retinas. Because my left eye, which is my ‘good eye’ also shows signs of being affected I have been prescribed a 3 week course of steroids to help speed up the recovery process.

Emotionally I feel drained, and a lot of sleep needs to be caught up on but I am thrilled to know what’s going on with my body and that it can be sorted! This evening is being spent recuperating with Harry Potter, and dairyfree chocolate. What more can a girl want?!

I learnt many things from Harry Potter…this was one of them.

Hospital Investigations

Since I last blogged things have been hectic. I have spent the majority of my days either at the hospital having various investigations carried out, or on the phone to them chasing down followup appointments. This week I have had more bloods taken and an MRI of my brain, eyes and spine with contrast performed. Tuesdays MRI experience seemed a bit surreal. It took 35 minutes, three medical personnel and 7 attempts before I was successfully cannulated as my veins were up to their usual disappearing act. This time allowed for me to internally become quiet anxious at the thought of being in the MRI machine for a minimum  of an hour – in the end it was about one hour twenty. I am generally not a claustrophobic person, but this machine brings that fear out in me, this is most likely exacerbated by the fact that I have to be strapped to the table to ensure my spasms cannot move me around to much and distort the images.

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Taken just after escaping the MRI machine

My stress levels have been through the roof this last week. I have fought so hard over the last four years to be put on a medication regime that allows me to have more control over my body again, and live a relatively normal life. The mere thought that my body may become more of an issue again is distressing. However I am lucky that I have a good support system in place, my family help keep me distracted, my boyfriend is great at talking through my concerns with me, and my councilor has been a fantastic space for me to vent and explore my frustrations at my faulty body.

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Relaxing in Costa after a long day of tests at the hospital

I get the results of my MRI on Monday. So I shall know then whether more investigations need to be carried out or if it is MS.

When The Drs Terminology Gets Terrifying

This week I have had three GP appointments, and visited three different hospitals. It’s been busy to say the least. For the majority of it I have managed to stay relatively calm and think in clear cut clinical terms. Today that went out the window. My GP this morning, unhappy at the treatment I was receiving at another hospital sent me with an urgent referral to my nearest emergency eye unit.  It has been an extremely long day of explaining symptoms, examinations and watching the same concerned expression on the nurses and Drs faces, when they realize that yes I really cannot see out of my eye.

Optic Neuritis for the second time in just under six months had the Drs in charge of my care today fairly concerned. Today they presented the fact to me that they had to consider that Multiple Sclerosis was the reason behind my Optic Neuritis. So tomorrow I’m heading back to the hospital for blood tests as there are a few other conditions than cause vision problems that they want to rule out, and at some point in the next two weeks I’ll be having a contrast MRI of my head and spine to give them more of an idea of what is going on.  Now I’m doing my best to remain optimistic, my way of thinking so far is that I already have a fair few neurological issues, so surely it’s another part of the bodies turn to be the problem. Not the most logical attitude I know, but it’s working for me.

In the meantime, Disney soundtracks are my distraction.

My Novel & The Dystonia Society

 

Preorder a copy of my debut novel here & help raise money for The Dystonia Society – https://www.britainsnextbestseller.com/beta//books/?id=55

Check out the trailer for my upcoming novel here https://www.youtube.com/watch?v=bDgQZ1zrS8Q

Finding Benedict

I was up in London today for an appointment with my fantastic neurologist. Whilst I always stress over the little things like timings, how the injections will go and medications, I never stress over seeing him. His manner is so calming that during the appointment I feel as if it doesn’t matter what he says, it’ll be okay as we will always put a plan of action in place to try and make the future as pain free and positive as possible! The hospital I attend has some fabulous Toy Story themed stickers on the wall in the waiting room which I love. As I’ve mentioned before I always picture my Dystonia to be a Toy Story style alien named Benedict. Which is why this picture naturally had to happen today 🙂

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Finding Benedict!

I’m currently coping with Optic Neuritis on top of everything else. The hospital which I’m under for this had decided to leave it up to my neurologists as to whether or not I was treated with steroids. He has decided that he wants me started on steroids and wants an MRI with contrast carried out, as this is my second flare up in six months. I shall be spending Thursday at the eye hospital so hopefully I can talk to them about getting all of this put in to place and moving forwards.

Overall today went extremely well.

Making The Most Of This Life One Spoon At A Time

My list of chronic conditions is an ever growing one; Dystonia, EDS Type 3, Non-Epileptic Seizures, Postural Hypotension and more! The list of hospital appointments is just as long. As I was diagnosed with each one I felt very much as if I were being forced to pause and take a step back in life. Almost as if I had no choice but to fail at achieving my goals. That may seem over dramatic, but it was a very real, very overwhelming emotion. Learning to accept life as spoonie was and still is a challenge. As I have mentioned before I have developed an attitude of watch me achieve everything you tell me that I won’t be able to. I shall achieve and aspire to all my dreams.

When I was exploring signing with my publisher I noticed that in their facts and questions page that they recommended if you were ill, waiting until you had recovered before going down this publishing path, because it is hard and a lot of work. Now obviously this is referring to recoverable conditions, hence why I skipped over it.  For my novel to be published I have to achieve 250 preorders, otherwise it won’t be able to go ahead (https://www.britainsnextbestseller.com/beta//books/?id=55). So for the next six weeks I have to put a lot of work into advertising and self-promotion via social media. Self-promotion may sound like an easy task but when one eye isn’t working and your body is dodgy anyway you tire easily. I know many of you know the feeling. This is when I adore Facebooks scheduled post function, it’s fantastic for when I need a quick break.

The next six weeks are going to be manic, and nerve wracking. However, it’s also exciting. I’m keeping my fingers crossed that I can achieve, despite everything , and manage to hit the 250 requirement! If you are a love of fantasy then you can order my debut novel here https://www.britainsnextbestseller.com/beta//books/?id=55

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