Tag: dystonia

Posted in Archive, March 2015

Word Search

Posted on by dystoniaandme

I’m the sort of person that words come easily to, whether that’s verbally or written. I may pause to search for a word once in a while if my brain fog is bad, but normally I’ll pluck another out to replace it. It’s an unusual scenario when I feel so completely stumped and unable to find one to suit my needs. Yet for the past week that’s exactly how I have felt. I’ve tested every word I can think of, yet none quite fit. Which makes trying to describe the situation I’m in now difficult.

When I saw my neurologist last Wednesday, he decided to add Botox injections to my shoulder to see if this would help control my twitches. This has helped beyond my wildest imagination. At first the pain that followed I put down to my body reacting to the injections, after all I do experience similar pain in my neck each time I get my injections. However unlike my neck, the pain has not improved, even lying down at night is painful. Consequently sleep is almost non-existent . Carrying things, anything touching my shoulder is extremely uncomfortable. I don’t feel like pain is the right descriptive word however, though it most definitively applys the majority of the time, I don’t know how to verbalize the sensation that I am experiencing. It is so uncomfortable and is setting my teeth on edge as it is constant. Hopefully it will ease off soon.

On a more positive note I have attached below the photo below that I promised of me standing.

Posted in Archive, March 2015

Positive Neurology Appointment

Posted on by dystoniaandme

Today I had my six weekly appointment with my Neurologist in London. As usual he was charming himself. He never fails to listen, which is a breath of fresh air after the experience I often receive at the hands of various other medical professionals. As many of you will know, recently my twitches have been worsening. This has been impacting on my day-to-day life. Some days I struggle just to dress myself and I worry about whether I will hit someone in the street or knock products over in a shop. These factors don’t stop me from going about my life, but they do prove to be rather big hurdles though, as I really would rather not apologise for twitching and hitting someone.

I explained this to my neurologist. Honestly I was expecting, at best, for him to up one of my many medications or add yet another one in to the cocktail. He surprised me however by offering to inject my shoulder to see if this helped bring me some relief. This was a treatment I had debated asking for, but I had wanted to listen to his suggestions first. After all, he’s kept my twitches fairly well controlled for the past two years. He injected my shoulder muscles three times, which in the moment didn’t bother me too much, but I am really feeling it now! I am keeping my fingers crossed that hopefully this will do the trick.

As usual he advised me not to over do it. I can’t help but laugh. I try to take this on board, I really do. Dystonia already holds me back so much though, I don’t plan on taking the easy option. Even if that would mean less pain. I would rather grasp every opportunity that life throw at me and live every second to the full.

Posted in Archive, February 2015

Beyond The Abyss

Posted on by dystoniaandme

When I left university, I didn’t have much hope. I associated my midwifery training, the potential that it held, as a measure of success in life. Being unable to physically do the job anymore because my brain didn’t want to cooperate with my body left me feeling like a failure. For a while I didn’t particularly want to do anything but curl up on my bed and cry. My university was fabulous, they held my place moving it all the time for me, but I think we both knew I was too ill and in denial. I was grieving for a life that I wanted more than anything, I’d had a taste of it and I didn’t want to give up and let go.

After a period of feeling sorry for myself and being angry, I began to realise I had two quite simple choices. I could continue the way I was going, I could be bitter and resent myself for having an illness completely beyond my control. I could allow myself to continue in a downwards spiral, enabling the bleak abyss inside me to take over. Or I could snap out of it. I could pick myself up, slap a smile on my face and fight. I’d never gone down without a fight before why should now be any different?

In all honesty this choice is one I have had to remake several time over. Finally admitting to myself at the beginning of this year that the Dystonia being so generalised was going to prevent my Midwifery dreams was a difficult but positive step. For over two years I have fought in every way I can to continue having a normal life, I have studied, done charity work, attempting to find some way of finding even a glimpse of the fulfilment that I felt on my Midwifery course. Qualifying as a Reflexologist sparked something in me, I enjoy it thoroughly, but I am limited in my practice due to the Dystonia. My creative writing A Level though I love with a passion, reading and writing are two of my favourite activities. Studying them, well that’s just fun for me!

Last Friday (20 February) an article I wrote for Cosmopolitan went up on their website. For the first time in such a long time I felt a sense of achievement and fulfilment. I wanted to yell from the roof tops. I never thought I would see the day I would have an article on Cosmo’s website. I’m rather tempted to frame it. This experience has given me such a boost, it’s shown me that despite having Dystonia tuning life upside down and giving it a good old shake, I can still do whatever I put my mind do. It has been very empowering and a much-needed wake up call. Feeling full to the brim of nervousness, excitement, and joy; showed me that writing can give me every passion filled sense that Midwifery did, I just have to push myself. Dystonia can try to stop me but it won’t manage to.

If you want to check out my article please click on the following link http://www.cosmopolitan.co.uk/love-sex/sex/a33626/sex-questions-disabled-girls-are-tired-of-answering/

 

Posted in Archive, February 2015

Disabled Dating; A Taboo?

Posted on by dystoniaandme

Back in 2012 when I first became ill I was in a long-term happy relationship, however my partner at the time did not deal at all well with my disability. He soon ended our relationship. At the time I had not given a moment’s thought to the difference between dating when you’re able-bodied and dating when you’re disabled. The reason for this is because to me I have always believed that it is who you are on the inside that counts, to me it does not matter if you have one leg or six!

My views however are that of a minority of people’s it would seem. Whilst people are happy to get to know you, anything beyond friendship would seem to be forbidden. To many it is just too embarrassing to be romantically linked to someone disabled, simply because we differ from the norm. This idea, to me, was reinforced when several months ago I was approached by the TV programme The Undateables, to see if I would be willing to take part in their show or if I knew anyone else disabled who would. At the time I turned down their offer appalled that I was considered undateable simply because I am disabled. However now I sit here considering whether I was wrong to turn them down so quickly. Isn’t hindsight a wonderful thing? After all I have been single for two years now.

An able-bodied person is much more able to go out and socialize and meet new people whether that’s at a club, restaurant, coffee-house etc. They have much more freedom and accessibility to choose to do this. I would love to meet new people. However take for example the fact that  I have no control, currently, over my left arm, I could hardly go to costa and have to apologise every few moments for hitting someone! I know some of you may think Online Dating to be the perfect solution. For some people I won’t deny this may be a fantastic idea but not for me, as it doesn’t take away the above issues which often can put people off when you inevitably meet. I want potential partners to get to know my personality and learn to dodge to my spasming limbs at the same time.

Society’s view on disabled dating is a hideous one. If two disabled people date, or marry, they tend to be rather harshly judged. You often hear and read comments on how they are unable to care for each other, or if they choose to have children that the child’s needs will be neglected as the parents will be unable to care for him/her. These views that are often voiced loudly and publicly are completely ignorant. The owners of these opinions in nearly all cases have never met the people involved so cannot make these judgements.

Able-bodied/disabled couples are also criticised. When out in public a lot of people will presume that the able-bodied partner is a nurse/carer/sibling. They rarely come to their own conclusion of the actually reality of partner/date. Again these relationships come under fire, especially online where people state that they should not get together as the able-bodied person will just end up being a carer. These opinions have been voiced with what I expect to be no insight.

I’d like to question these people who claim us disabled people cannot date either able-bodied or disabled persons. I want them to imagine they became ill and could not be cured. What would they say then?

Naturally I defy these naysayers.  I believe that I’ll get my fairytale ending, just with a few more spasms, falls and laughs than originally expected!

Posted in Archive, January 2015

Dream A New Dream

Posted on by dystoniaandme

Today’s blog post shall be brief as I have been up to London for my Neurology appointment and am now very tired. My Neurologist was quiet apologetic and concerned that the last lot of injections had not worked, which left me with my normal extreme spasms. Apparently this sometimes does just happen for whatever reason, but to be on the safe side in the hope that this will work better, he upped the amount he was injecting everywhere. This has reassured me and helped to quell my fears that this batch of my injections may not work. I am now feeling decidedly more positive about it.

He confirmed the Hand Therapy’s diagnosis that the Dystonia is in my hand as well. However my symptoms in my hand are nowhere near as severe as the symptoms in my neck, jaw and eyes which is very positive. He stressed it was important not to aggravate it, I’m guessing this means I really need to learn how to walk without tripping over my own two feet…or my walking stick! This once again throws my Midwifery dreams out the window. I’m starting to realise that until a Neurologist hands me a pill and says this will cure you that I need to find a new dream. Now that’s not to say that I’m giving up on it, it’s more like putting it to bed for a long sleep until/if it becomes a realistic option again. I left university in the summer of 2012 on health grounds and for the last two and a half years I have built my Midwifery hopes and dreams up only to have them go up in flames around me more times than I can count. For my sanity I need to take a break from the emotional rollercoaster ride that that dream has taken me on. My year of training was the best experience of my life and I treasure it and for now that will do.

My reflexology career has now also been put on hold due to the hand Dystonia. Whilst my neurologist said he didn’t mind me doing the odd bit of Reflexology work, I have to be careful not to overdo it. I have always loved reading and writing. I can get lost in books for hours on end and will happily write all day. There are plenty of degrees out there in Creative Writing and Publishing, perhaps I shall discover a new dream down that road. For now though I must put my love of reading into action and brush up on information on another genetic condition I have been diagnosed with. I’ll fill you in on this new diagnosis next time.

 

Posted in Archive, January 2015

Spasms Four Weeks Early

Posted on by dystoniaandme

For just over two years now I have had regular Botox injections to help control my Dystonia. It started off being every twelve weeks but we soon established that I need it more often than that. By the five to six-week post injection mark the spasms would be back. If I was lucky they would be minor spasms, if I was unlucky I would experience jaw tremors that were slowly loosening my teeth and extreme spasms that would dislocate my jaw. Thankfully my wonderful neurologist was willing to bend the rules a bit and has since been administering the injections every six weeks, which has worked well.

However as I am sat here typing this I am debating taking another Tramadol to help me deal with the pain of my jaw spasm. Normally when I reach this point I have a week at the most to go before my next injection is due. The knowledge that the pain will soon be but a distant memory is comforting. Today things are different. Its been only three weeks since my last round of my injections, and because I wanted to see if I would be able to last longer in-between injections my neurologist agreed on doing them at week 7. That’s another 4 weeks. I have spent the day wondering what’s changed. I know that becoming resistant to the Botox is a risk due to how often I have it, however my neurologist assured me that as I cope on a lower dosage that this risk was minimal. Now I know there is always going to be somebody  who has a side effect no matter how small the risk, but if this was the case I would expect my neck or my blinking to be starting to spasm too, as I also have these areas injected as well.

I briefly entertained the idea that perhaps he hit the wrong muscle this time after all no Doctor, no matter how good is perfect. I struggle to believe this though. If I cast my mind back over the last few months I am aware that I have spasmed earlier than usual on several occasions, admittedly however never this early. A glance at my symptom diary confirms this. A part of me wonders if perhaps I just need the dose upping in my jaw. I have much  higher doses to my neck, but still with enough room to allow more to be injected to the jaw muscles.

I have taken a Procyclidine tablet in the hope that this will take the edge of the spasm. Between Procyclidine, Volterol, Tramadol and if needs be Diazepam I am hoping to be able to control the spasms and pain levels. The idea of spending the next four weeks like this puts fear in me. I cope better with the majority of the rest of my symptoms, Jaw spasms I struggle with. Everything from a sip of water or eating soup, to talking can aggravate it when its bad. Diazepam is always my last resort. Even on a small dose I struggle to stay awake.

When discussing my worries with my mother earlier she pointed out that perhaps this is just a blip. Blips have occurred before, though normally this is because I have caught a cold or some other bug causing my body to go into meltdown mode. Right now I would welcome a bug, anything to explain the spasm and take away the anxiety of another four weeks of pain.

I am reluctant to give in to the pain and medicate myself anymore right now, as I know this could be just the tip of the iceberg and if it is I want to feel like the medicine has made a definitive difference. If I give in early and take them every four to six hours then when I reach the bad stage it won’t feel like they are making a lot of difference. In the meantime my medicine of choice shall be curling up and watching Jack Whitehall and Russell Howard. Nothing like some comedy to lift the spirits!

 

Posted in Archive, December 2014

Reaching My Christmas Goal

Posted on by dystoniaandme

I haven’t posted anything in almost a month as I have been bursting with such amazing news that I wanted to share around Christmas. As many of you know each year since I got ill in 2012 my goal has been to be able to walk by Christmas. It never mattered to me whether that was with the use of splints, walking sticks etc., as long as I was up and out of my wheelchair and back in control of my legs. Thanks to the private hospital I am under who are treating me for Chronic Neurological Lyme Disease I now know how much of my body is Lyme and how much is Dystonia. I am absolutely thrilled to say that my jaw, neck and my arm twitches/jerk spasms are all of me that is Dystonia; I could cry with happiness just writing that as I am extremely lucky that these three are controlled well by injections and medication.

I’m still having a lot of physiotherapy to help me learn to walk, and due to my EDS type 3 I have to wear a number of splints on my legs to help support my joints. I even have funky pink polka dot walking sticks. I’ve got a lot to learn still as due to my damaged ankle ligaments I fall over a lot, this recently resulted in a dislocated finger and broken tendon. However that is minor in comparison to the joy I feel. The private hospital I am under have decided to prescribe me another 3 months of medication, along with running several new tests, but that’s a separate blog post for the New Year.

My neurologist has been so supportive, when he first met me I was unable to walk and even attempting to stand was rather risky. It is great to be able to go for my injections and see how thrilled he is for me. He is pretty sure that the Chronic Lyme is what caused my Dystonia due to damage it can do to the brain. Although the spasms I am left with are painful, and my Oromandibular Dystonia can cause my jaw to dislocate, my symptoms are much more manageable now than what they were!

On that positive note I would like to wish you all a very Happy Christmas and a Fantastic New Year! I shall be back to my regular blogging self in the new year.

Posted in Archive, November 2014

Looking Forward

Posted on by dystoniaandme

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.

Posted in Archive, November 2014

Let’s Talk About Meds!

Posted on by dystoniaandme

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!

Posted in Archive, October 2014

Clinging To Hope

Posted on by dystoniaandme

Frustration. Worry. Pain. Hope. Joy. A selection of the emotions that over the last few weeks I have experienced. I have improved leaps and bounds since I started new treatment for Chronic Neurological Lyme Disease several weeks ago, there is a long way to go but the improvement are more than I could dared to have hoped for. Yet I feel like I am clinging to these improvements, that they might slip away at the slightest wrong move.

I must admit that on some level I am fuming that it has taken 16 years to get diagnosed. I have spent the majority of my life ill, passed from one specialist to the next, having test after test. The result of their continued ignorance is that I shall now have to live my life with Dystonia. I was not born with it, as far as we know it is not genetic, if I had simply been given antibiotics when I was six or in the couple of years after that I would not have to live with (a currently incurable) movement disorder.

I would not have to cope with the agony of my jaw dislocating due to spasms, or my neck twisting hideously. My ligaments throughout my whole body would not have been so stretched due to spasms that it shocks physiotherapists at the extent of the damage. I would not have developed pain triggered Non Epileptic Seizures if not for Chronic Neurological Lyme disease and Dystonia. I would not have spent 10 hours unconscious seizing in A&E on New Year’s Day 2013. I would not have collapsed and seized in the middle of roads, on the stairs, in shops etc. I would not have put my family, my friends, and myself through hell and back.

Although I have always been ill in one form or another it was not until 2012 that it became disabling, right at the end of my first year of Midwifery training. As many of you know, Midwifery is my dream job, and I hope to one day be able to go back to my training. More than Midwifery I dream of life without illness (I except I have to live with Dystonia). A life where my family don’t have to plan their activities around my health. A future where I can live life to the full without worrying about the impact it will have on my health! Without full treatment for Chronic Neurological Lyme Disease I won’t get better. I will continue to deteriorate rapidly. Lyme Disease has claimed the lives of too many people already I don’t plan on being its next victim. I need to raise £10,000 to fund vital treatment if you are able to please help or share this page/link! https://fundrazr.com/campaigns/erfg6/ab/04081d

 

Thank-you!

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