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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

When The Drs Terminology Gets Terrifying

Posted on by dystoniaandme

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.

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

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Posted in Archive, May 2016

Crazy, Amazing, Exciting!

Posted on by dystoniaandme

I cannot believe I’m writing this! This weekend I signed a preliminary contract with Britain’s Next Bestseller – they are a publishing house. Having a novel published has been a dream of mine for many years, but I did not expect to achieve it so soon. The last couple of weeks have been a flurry of email exchanges between myself and the publisher. Every time my email notifications have popped up, I have been brimming with excitement. This weekend, along with signing my first contract, I also saw my book cover for the first time. I am not an artistic person in anyway, so seeing my book being brought to life is quite something.

The publisher I have signed with is a relatively new imprint; they focus on finding authors that there is an interested market for. To do this authors sign a contract agreeing to a 250 pre-order target. For the readers this provides security as they are not charged for their pre-order until the book achieves its target; for the author the publisher provides industry beating royalties. As a company it enables the best of both worlds for both author and reader. I have six weeks to achieve the goal of 250 pre-orders. This is an extremely exciting time, which I can’t quite believe is happening. It is thrilling to have a publisher believe in my novel. I cannot wait to share it with you all. If you’d like to have a look, here’s the link https://www.britainsnextbestseller.com/beta/books/?id=55

thumbnail_Regan Final Cover (2)

 

 

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

Assault & Dystonia; Taking Back Control

Posted on by dystoniaandme

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

Posted on by dystoniaandme

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

 

Posted in Archive, May 2016

Defeat Is Fine…

Posted on by dystoniaandme

This evenings blog is going to be a short one as my body is being slightly temperamental. With this in mind, I want to focus on knowing when to hold your hands up and admit defeat. Many of us are guilty of powering on through the hard times. Fixating on a task is often a very handy coping mechanism, and can be a great tool. However sometimes you can spread yourself thin and wear yourself out, causing more issues.

This last week has not been one of my best, so naturally I have kept myself busy. I have read essays for friends, thrown myself into my writing, found any and every excuse to distract myself. It has taken many conversations before I have stopped and asked for help. Now I lie here in bed, sore, spasming and stressed.

We all have moments like this when we let life get the better of us and control us. The only thing we can do is stop, breath, dust ourselves off and carry on.

Posted in Archive, May 2016

Importance of Utilizing a Support Network

Posted on by dystoniaandme

Whether you are ill or not having a support system in place is something everybody needs. Everyone deals with varying difficulties in life, and whilst experiencing these a support network helps keep life ticking over and enabling you to feel like you can cope. Often during difficult times, it becomes very tempting, and easy, to simply shut yourself away from family and friends. I know personally that I would much rather deal with a problem by myself, this is simply because by talking to others the issue feels more real and daunting. However, acknowledging it and making plans to resolve it with people you trust is a key to moving forwards.

When I was first diagnosed with Generalised Dystonia in 2012 I shut myself away from most of my friends; even a trip to Tesco was difficult as I did not want others to see what had become of me and judge me. Reflecting back on this now, I know that this was more a fear of seeing others react to my spasms and having to admit that I really was having to deal with this. A huge chunk of me wanted to pretend it was simply an unpleasant dream. Despite knowing that talking amongst trusted individuals is helpful, I still fall back into bad habits whenever life goes slightly askew.

This past week I have been coming to terms and dealing with some difficult situations outside of Dystonia. Admitting that they happened and needed dealt with was a hugely difficult step, but a necessary one. My botox is a week late this time round, I am receiving it this coming Wednesday, so dealing with a combination of life being more flawed than usual and my spasms progressively increasing in severity, has been more than I felt I could cope with. This is where a support network is vital. Family and friends can help give an outside perspective on how to manage life events, and advise what steps to take. This is an invaluable tool! Sometimes though, you need more than just the loving circle of individuals. Realising this is key. I have just started talking to a councillor. This is something I had hoped I would never have to do again, but it’s been necessary and I know is helpful.

Living life with Dystonia is never going to be easy. I greatly admire every individual who does so. Realising when you need support is not a sign of weakness but of great strength. So please remember to talk to those around you. This condition drives us all barmy, sometimes we need grounding.