Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Archive for the ‘November 2014’ Category

Looking Forward

At the start of this week I had an unusual amount of extreme spasms, these had been triggered by a medication and have now settled down. At the time it would have been sensible to have spent the day in bed where I would have been safe. Instead I dragged myself, rather literally, to college. Now my class have witnessed some of my spasms but not to this extreme. Previously I would have wanted to stay home due to embarrassment, instead I went to college embracing my illness and was only irritated at my pain levels.

As much as I would rather that I did not have any of my chronic illnesses, I am thankful for them. Since being ill my confidence to go out in public with my limbs distorting, my jaw dislocating and my body paralyzing when it has had enough has slowly climbed. Now I can laugh my spasms off and joke about them. I am very open with others about it as I would rather educate them than have these 3 illnesses remain unheard of. I must give credit to my class though who did not bat an eyelid at the extremes my body was going to, I know this helped me relax when I got there. Dystonia and Lyme Disease may have turned my life upside down but it has also filled me with determination and inspiration to pick up the pieces of my life. I always thought that I had to stick these broken pieces back together exactly as they were, retracing my steps, but what use is living in the past? Now I’m picking up the pieces and carving a new path for myself.

I am going to be cured of Chronic Neurological Lyme Disease, so despite the fact I will always have to live with Dystonia and EDS, I have so much hope in my life.

Let’s Talk About Meds!

I recently got approached by an American company asking me if I would be willing to blog about my medicine. I was very willing to do so and this is something I am very open about. Medicine is great, it can cure illnesses, take away pain and help us manage our conditions. Now obviously this depends on the type of illness and type of medication prescribed by your doctor. For me, some of my medicine will eventually cure me of Lyme Disease, other medicine helps me to manage my Dystonia and a handful of pills keeps my pain levels under control.

One of the key things about medication is drug interactions. Most Doctors will check before prescribing you a new medication that it does not interact with another, however some forgot to do this. I have experienced this once before when a muscle relaxant I was prescribed to help with extreme muscle spasms interacted badly with a pain-killer I was taking regularly. I was lucky that the reaction only caused me to sleep constantly. It could be quite humorous at some points when I would fall asleep in the middle of talking! I was like this for about two weeks as we had to slowly ween me off the medication. However joking aside medication interactions can be very serious and it is always important to check with your Dr first, or check the pamphlet that came with your meds.

When I was first put on my meds I naïvely figured it would ‘fix me’ or at least enable me to have a good quality of life. What I did not factor in at that time was medication side effects. I knew they existed I just never thought I would experience them. Clonzepam was the first medication I reacted to badly. I don’t remember much of what happened, but I turned completely psychotic. I was determined to find scissors so I cut all my hair off. Mum ended up having to stay home from work to look after to me as I was a danger to myself, I am thankful that I was bed bound. Diazepam was the second medication I reacted to. My local hospital had prescribed me it after my spasms severely damaged my leg earlier on this year. I was fine for the first day or so, then I turned psychotic again. This time I was convinced that amputating my spasming leg would cure me of all my illnesses. I was desperate to contact my neurologist to set up a date for the amputation and devastated that nobody could understand my logic! Months on from it and I am glad that nobody thought Hey, why don’t we give it a go!

At the moment for my Chronic Neurological Lyme Disease treatment I take a mixture of medication and supplements which works out as 47 pills a day and 1 injection twice a week. For my Dystonia I take 6 pills a day and have 6 Botox injections every 6 weeks. I take 2 tablets for migraines every day and 2 syringes of allergy medication every morning. It works out that I take 57 tablets/syringes a day, then throw in some injections every now and then, and that is not even factoring in days when I need pain medication and muscle relaxants. It is a lot to remember to take! However it is vital that I take these at the right time, such as if I decided to take my evening dose at the same time as my dinner time dose I would be feeling sick very quickly as they cannot be taken with food! As many of you know from my earlier posts one of my symptoms is brain fog so I rely on reminders in my phone to help me remember to take my medication.

Medication is an amazing thing but you need to know what you are taking and why. I am the type of person who likes to take as little medication as possible, however I recognize the fact the Lyme Disease made me seriously ill and if I want to get better I have to take them. I understand that I have to live with Dystonia for life so I will always be having a neurotoxin injected and I am ok with that.

Medications have a dire effect on the body if not taken safely. So please be sensible and talk to your Dr about meds!

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