Tag: dystonia

Posted in Archive, June 2016

Swimming In Relief

Posted on by dystoniaandme

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.
Posted in Archive, June 2016

Hospital Investigations

Posted on by dystoniaandme

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.

Posted in Archive, June 2016

Finding Benedict

Posted on by dystoniaandme

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.

Posted in Archive, June 2016

Making The Most Of This Life One Spoon At A Time

Posted on by dystoniaandme

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

thumbnail_Regan Final Cover (2)

Posted in Archive, May 2016

“How Did You Not Notice Your Eye Isn’t Working?”

Posted on by dystoniaandme

My body going wrong is something I have become rather used to over the last four years. Each time something starts functioning abnormally I find myself less and less surprised. Over the Christmas period I lost my sight in my right eye, and had some issues with my left one too. After spending the majority of my time at the hospital for three weeks I was eventually prescribed Doxycyline for a Lyme Disease flare up. This treated the issue, and everything returned to normal. I was discharged and told they would keep an open door policy for me. Foolishly I presumed that I would not need this and promptly went back to living life.

On Saturday I visited my local opticians. I had noticed that my glasses were no longer helping with my sight, my right eye had begun to get painful and was not focusing properly. After repeating over and over again the eye exam, and consulting his colleagues, the optician asked me to come back today. This was so he could redo the test and in case a miracle happened and my sight improved over the weekend.

There is something rather unnerving about watching a professional get more concerned with each passing moment. At the end of today’s exam, he turned around and asked me who would see me sooner, Eye Casualty or my neurologist. This instantly had me on edge. In theory Eye Casualty will see me quicker, as my neuro is not due to see me until the 6th June. The poor man and his colleagues could not comprehend how I had managed to not notice the dramatic deterioration in my sight. I laughed in pure exasperation at this comment, trying to explain that my body functioning abnormally was something I was used to, so it had not struck me as something to worry about. So off they sent me with an urgent referral in hand.

Upon getting through to Eye Casualty the nurse asked if I had been seen by the John Radcliffe yet. I had no idea that I was being referred to them so queried it, only to have her respond with well because of your MRI results. Excuse me? I had been informed that my MRI was clear. This took her by surprise. She has decided to wait till five to try and speak to the consultant who saw me over the Christmas holidays.

So now I’m sat by the phone waiting for her to call back as she hopes to squeeze me in tomorrow. I’ve gone from being relaxed about it all to rather nervous.

Posted in Archive, May 2016

Contemplating Dating

Posted on by dystoniaandme

For the last eight months I have been frequenting the same coffee shop several times a week. If the sofa is available, I curl up in the corner of it whip out my notepad and will scrawl away for hours on end quite happily. It’s my routine, and one that I thoroughly enjoy. Spend enough time in places like this and you easily fall into habitual conversations and friendships with other coffee lovers.

The other day whilst lost in my thoughts, one of the regulars, Mr. Latte we shall call him, came over for our usual chat. Towards the end of our talk he asked if I’d be interested in going on a date and getting to know each other better. It was a lovely offer, and normally I would not hesitate, after all what do I have to lose? This time however I did pause. There have been so many occasions in the last year were I have watched my illnesses blow up a date in seconds; which is fine, it means time is not wasted, but it’s emotionally exhausting. Putting my conditions aside, I could not help but wonder how I would handle it. After the events of the other week the idea of being out with someone I only vaguely knew was not a pleasant one.

I find myself rather irritated by my reaction. When did I start to let my health and fears control me?  I have always been the person to say yes and jump on board. This momentary new attitude isn’t the person I am, and is one I refuse to allow to become part of me. My stumbled over “I’ll think about it”, is not something I’ll do again. If I want to do something, then great off I go, if I’d rather not then fine, that is also great. Saying either yes or no is okay, but I shall not be this indecisive person any longer.

Posted in Archive, May 2016

Living with Ehlers-Danlos Syndrome Type 3

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I don’t talk about my EDS much, though it’s a painful condition it’s symptoms are by far less noticeable than my Dystonia. This has resulted in me being more than happy to allow it to simmer away in the background. Often people think that the condition means I’m simply just ‘a bit bendy’. The reality is slightly more complicated.

EDS Type Three affects multiple parts of the body. In my case my skin is stretchy but tears and bruises very easily, I have multiple allergies, sublux and dislocate at the slightest thing and have chronic pain. When I talk about my subluxations and dislocations people often presume that I have to have fallen over, or injured myself in some way to cause it. This is not the case; this week I woke up on Wednesday morning to discover I had dislocated my thumb in my sleep. I laughed so much at this because it is frankly a ridiculous situation to find yourself in.13184635_898295980296182_140464853_o

Whilst the EDS and Dystonia are two separate conditions they impact each other. My jaw spasms will often result in a dislocation, this happens more and more frequently. Previously the two conditions acting up at the same time would have been enough to set a seizure off. It’s a worry I have in the back of my mind frequently, there is always a chance that the next dislocation will result in me seizing in an ambulance. However, despite a recent increase in dislocations I am currently just coming up to six months’ seizure free; which has me thrilled to bits.

Posted in Archive, May 2016

Assault & Dystonia; Taking Back Control

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When I was diagnosed with Dystonia I developed a need for control; exercising it in life helped me cope with the lack of it in my body. Consequently, I don’t cope well when things are beyond my ability to manipulate. On the evening of the 1st May I was sexually assaulted. I’m not going to go into details. However, for a person who craves control in life this was yet another stark and frightening reminder of how little control I have. Naturally the police were involved, and I must say the support I have received from both them and my university has been outstanding. Unfortunately, due to a lack of forensic evidence the police were unable to charge my attacker. Whilst a disappointing outcome there’s a lot that can be taken from this ordeal. As many of you may have picked up from my blog posts over the last week, my emotions have been all over the place; one moment I’m smiling, the next I have a hatred for all near me, and then I’m crying. It’s been exhausting.

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Whilst retelling the attack to the police officer working the case, he mentioned to me that many victims of assault emotionally spiral and are unable to cope; he asked that I try not to let this happen to me. I informed him that that isn’t me; I am a stubborn woman. Whilst I’ll admit the last week has been a bit up in the air, I haven’t hidden away from the world. If I can live with Dystonia, then I can make it through this. I simply refuse to let anyone have a negative impact on my life. It is mine and I will be happy!

Focusing on the positives around the incident has been key to enabling myself to feel like me again. I have been thinking about when in 2012, during a stay in hospital, a rather arrogant neurologist, who had missed the module on bedside manner, misdiagnosed my symptoms as psychosomatic. He informed my family and I that my symptoms were due to trauma and stress, and that they would continue flaring up whenever my stress levels increased. He was obviously wrong and months later I received a correct diagnosis, but this misdiagnosis and subsequent few months of incorrect treatment still irk me. However, I cannot remember the last time I was as stressed and emotionally charged as I have been over this past week, but my Dystonia has stayed at its usual spasm level throughout – despite my Botox being overdue. Proving once again that the previous neurologist was wrong. It’s a fact that for me, provides a gateway to happiness in what has been a dark time.

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Posted in Archive, May 2016

Progress; Laughing Through The Pain

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As Dystonia Awareness Week draws to a close it is hard not to draw comparisons to previous years. Today is my beautiful sisters 21st birthday; Happy Birthday Eloise! To celebrate we drove down to Portsmouth, where she is studying, to visit her for the day. This is something we do each year for her birthday, and it’s always a fantastic laughter filled day.

The first year we did this was 2013, my Dystonia was still very much new to me and we had not found a treatment regime that worked yet. Due to this I had sunglasses on and off all day as the sunlight was aggravating my blepharospasm, I was wearing several layers and huddled in blankets as the bite of the wind was increasing the severity of my spasms. At this time, I was completely reliant on a wheelchair. I had major trust issues when it came to people pushing me around, I was terrified they would tip me out, so you can imagine how I felt about this.

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2013

Whereas today I got out the car and strolled to my sister’s house; if I had still been in my wheelchair I would not have been able to get through the front door! I was able to enjoy the sunshine without worrying about my eyes, and it was hot enough to not need to layer up. Even though my Botox is a week late I only had a handful of spasms over lunch, and I simply laughed through the pain. I think my mother may have doubted my sanity at this point as she asked me to recite the alphabet backwards to prove I was completely conscious.

Today has been extremely upbeat, it has shown just how far I have progressed thanks to ongoing treatment.

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2016