Tag: neurological conditions

Posted in Archive, October 2013

Fantastic Neurology Appointment

Posted on by dystoniaandme

This afternoon I was up in London seeing my lovely neurologist. As usual I went armed with lots of questions. I feel very blessed that I see such a lovely man, who listens to everything I have to say. His manner is very calming, I hate needles, but his calm attitude puts me at complete ease, I would never let anyone else stick so many injections in me. I was excited to see him and to show him how much progress I have made with creating my life around my symptoms.

We went through all my queries before my injections and he was so helpful with each one. He is going to write to my GP explaining that I need the IV antibiotics for Lyme Disease, I am relieved he has agreed to do this as it means I do not have to argue with my GP about it. I have a severe intolerance to Lactose, which unfortunately all but one of medications contain. At first this was fine as my body was coping with the small amount, but now that it has slowly built up in system my body is reacting and is making my other medical conditions, e.g IBS, worse. The most annoying issue with it is that no matter how much time I sleep for I wake up feeling like I never went to sleep and I find it hard to keep going in the days, my neurologist has offered to get the pharmacy at the hospital to look into alternatives for me. This would make such a big difference. We have also juggled around my next two appointment to make sure that my jaw is in working order for Christmas and my 21st birthday.

We spoke about my functional paralysis and agreed that in a way it was positive as it was less disruptive to life, although it is not ideal. There is not much I can do other than take pain killers and try to stimulate the part that is paralysed in attempt to disrupt the incorrect signals that are being sent – this has not worked yet but I shall keep trying. I had my eyes, jaw and neck injected with Botox so my spasms shall continue to my kept in check and my jaw tremor should soon settle down for a few weeks.

It was a fantastic appointment. I am truly blessed to have such a wonderful neurologist looking after me.

 

 

Posted in Archive, October 2013

A change in Tactic

Posted on by dystoniaandme

So my body seems to have decided to change its tactic. Normally when I am in a lot of pain I have a Non Epileptic Seizure. The last two weeks or so my body has disconnected from certain parts of me or all of me, leaving me functionally paralysed. I have had a handful of seizures as well but the functional paralysis does seem to be my body’s main coping mechanism now.

I am in two minds about this change. On one hand I am happy that there has been a decrease of seizures, as it means I am conscious more often, not forgetting hours either way of the seizures etc. On the other hand the functional paralysis can be rather scary. The first time it really hit me I lost the connection to the lower half of my face for 7 hours. A big part of me knew it was just my body coping with pain, but a small part of me was terrified that something worse was at play such as a stroke. When the functional paralysis comes out to play I either disconnect for one to two minutes or I disconnect for hours. There is no middle ground.

As I type my right foot is in spasm. It felt like the force of the spasm was trying to break my big toe. I was in a lot of pain and was beginning to think that I should be sensible and shimmy down the bed a bit so that I did not hurt myself if I ended up having a seizure. However instead of seizing both my legs ended up functionally paralysed despite my left leg having no spasm in it at the time.

I am seeing my neurologist on Tuesday for my injections and a chat, so am going to add functional paralysis to my list of questions. I’m not sure if there is anything he can suggest to help but he may be able to advise something. I think I prefer my body coping this way but at the same time it scares me slightly.

Posted in Archive, September 2013

Start of Something New

Posted on by dystoniaandme

Happy, on top of the world, ecstatic, over the moon. Put this combination of emotions in to one and that is me now. Today has been a fantastic success. I attended my first day at college and loved every second of it. The lecture today was on Anatomy and Physiology, which was just perfect as I find it an incredibly interesting subject. A lot of what we covered today I had already learned at university so it was a bit like revision, I loved this as I had remembered everything, which enabled me to contribute to the lesson more.

Tomorrow’s lecture is a practical one. This excites me and makes me nervous. I am sure my body shall be fine with it, but as with all things in life you can never be a hundred percent certain especially with Dystonia, hopefully tomorrow’s practical shall put the tiny worries to rest. The four hours tomorrow shall all be practical but from next week onwards the Friday lectures shall be 2 hours practical and 2 hours focusing on business and how to set up your own business. This is fantastic as once qualified I shall be setting up my own business so that I can work from home.

I decided not to attend riding today as my sight has not been great. I have been full of the cold which has caused more spasms. It has particularly been causing an increase in spasms in my eyes. Annoyingly the spasm that has occurred most is the one that causes my eyes to roll up into my head, leaving me blind, the pain of this particular spasm causes me to have a Non Epileptic Seizures most of the time. This happened today at college, thankfully before the lesson started, but reassured me that I was making the right decision not to ride as I would be putting myself and the volunteers at risk. I am looking forward to next weeks session though.

I feel like a ball of positive energy! I am brimming with happiness and full of excitement for tomorrow. Being able to study again is so satisfying and opens many doors for me. In a way I feel normal.

I’m so happy!

 

Posted in Archive, September 2013

Finding My Feet

Posted on by dystoniaandme

So after a few days of feeling a bit rough due to a viral infection, I am finally feeling more myself. I try to avoid picking up any illness as much as possible as when I get a bug my Dystonia acts up. It is like my little Dystonia alien waits until I’m feeling under whether to kick it up a few notches and go “Haha, so you want to rest? Well I’m going to distort both your legs, try to rest now!”. My alien really is a pain.

I finally feel like I am beginning to find my feet and learn to live life alongside Dystonia. I have accepted that I can’t live life with it in the background because it disrupts things too much, but I can live alongside it, and ignore it as much as I can. I kept my life on hold for a year, and now I’ve taken it off pause and from next Thursday I am shall be studying again.

In life people define themselves by their achievements and what they have done. I was considering this the other day and trying to figure out what I would define myself as/by. My thoughts flicked from Dystonia advocate, fundraiser, Author (My novel is almost finished), and reflexologist (when I qualify). It took awhile before I realised I didn’t have to choose just one, I can choose them all, as each one of them makes me proud. This last year I could have sat at home feeling sorry for myself doing nothing, instead I decided to try to educate the world on Dystonia – an ongoing task, fundraising for The Dystonia Society (I have raised over £1000 so far), started and almost finished my first novel, and found myself a new career path. I am proud of me!

Tomorrow I am attending a craft fair, where half of what is raised will be given to a Dystonia charity. I am rather looking forward to this. I like to Crochet so it shall be interesting to browse whilst helping raise awareness for Dystonia.

I saw this quote below, which has been taken from one of my favourite Disney films. For me it rings true. The path I am now on is by no means easy, and I struggle often, however it will lead me to where I need to be.

 

Posted in Archive, May 2013

Dystonia Alien Gets Creative

Posted on by dystoniaandme

My Dystonia alien seems to have come up with yet another inventive spasm for me. Now my head and neck rather violently jerk to the left whilst my mouth opens and closes making a sort of popping noise. It’s rather painful and leaves me feeling like I have pulled the majority of the muscles involved.  The spasm happens all day, sometimes l go a few hours without it and then it will start all over again, I have noticed that when I get tired in the evening this spasm happens far more often.

My mum emailed my consultant for me last night, updating him and asking him if they were any closer to knowing when I would be admitted for a week. However it normally takes a fair period of time for him to get back to us, so I am not expecting to hear from him any time soon. I spoke to my GP this morning, asking him if there was anything he could suggest I do as I am in a fair amount of pain and getting to sleep and staying asleep is becoming almost impossible. At first he tried to persuade me to try the Clonzepam again, but as it turned me psychotic the last time and had me wanting to cut my hair off I told him I would not go back on it. So he has decided that I am to up my Tramadol, which is a pain blocker, to two pills in the morning and one pill in the evening until the pain side of things settles down, then I shall go down to one pill in the morning and one pill in the evening. I am also to go back on to a medication called Baclofen which is a muscle relaxant. I had been on this previously but my consultant took me off it as at the time it was not helping me, it made me forgetful and I was on a very high dose. My GPs thinking is that because so much more of me is affected by the Dystonia than previously the Baclofen may help, if it does help then I am to increase the dose.

I am really hoping all the medication does help, I feel like I have fought against Dystonia for a fair while now without a lot of help from the medical society, and a bit of help in this endless battle would be greatly appreciated. I have not been able to get to sleep easily lately and I am waking up often in the night due to spasms. Lack of sleep is beginning to add up and being rather tired in the day makes fighting against my Dystonia alien that little bit harder.

I am a big believer that when you suffer from any sort of illness you should always explore alternative therapies to see if you can get any relief from them as taking lots of pills (like I currently am) is not good for you. When I was little I suffered from Chronic Fatigue Syndrome and had reflexology for a period of time to help. It certainly relaxed me and I always had a great nights sleep afterwards. With that memory in mind I have found a reflexologist who comes to your house and is not too expensive. I have no idea if it will help me at all but my theory is this, when you have Dystonia you are advised to avoid stress and to try to stay relaxed, therefore having reflexology done, which is a relaxing/calming experience, should provide some sort of help, even if it is just having a great nights sleep afterwards. I am having my first session next Monday and I am really looking forward to it.

I am hoping that with a combination of medication and reflexology I should be able to feel ‘better’ in myself  and have more energy to fight Dystonia with!

Posted in Archive, February

Benedict’s revenge

Posted on by dystoniaandme

I have had a rather busy and sociable week. It has been completely brilliant and was a slight taste of ‘normality’ for me. Normality and independence are something that I desperately cling to, as I refuse to give in to Benedict’s attempts to seize control and conquer my body. However, when you have Dystonia a busy day is enough to exhaust you, so a busy week was perhaps a step to far. I still think this week was so worth the last few days of Dystonic  antics though!

Benedict, my little unwelcome Dystonia alien, decided to start playing up on Friday night. My right hand/arm had gone into a spasm, and started to tremor, my head also had a tremor going on that looked like I was shaking my head to say no very fast, and my back decided to bend backwards, in an attempt to fold me in half. As you can imagine this was extremely painful and rather distressing.

Then last night my leg decided to spasm. Now normally I can just about control my emotions when my Dystonia plays up. Usually it is only a few choice colourful words that escape beyond my spasming lips. However this particular leg spasm was agony, and had me in floods of tears due to the pain. Then my arm decided to join in. By this point I was extremely upset, and rather angry at myself for giving in and letting out my emotional response to the spasm. Yet they do say that a cry now and then is healthy, so perhaps I actually did myself a favour.

Today was also eventful. Even though the day was relaxed, we just sat quietly at home, as my grandparents and my man were visiting, my body still deemed it necessary to act up. I can only presume that the many activities I have done this week had triggered the hideous spasms I have experienced over the last 48-72 hours. I woke up at 5:30 am this morning to my arm spasming and my head doing its no no tremor. Then my leg put up a big fuss when I attempted to get dressed. Through-out today my arm/hand has been having spasms and tremors often and violently. At one point I honestly though that if the spasm carried on for much longer then my shoulder would end up dislocated – thankfully it eventually ceased. At other moments in time the tremor in my arm was so violent that I ended up hitting me sister.

I have currently given in to the spasms and pain, and retreated to the quietness of my room. However I have not come here to dwell on the problematic issues that Dystonia causes. I have returned to my room, to relish in the memories of the week, to mentally high five myself for the accomplishments I have made and to look forward to the days ahead. I cannot wait for tomorrow afternoon to have a consultation with a personal trainer that I hope to work with. The beauty of having Dystonia is that you know that even on bad days that things can only get better! There is so much to look forward to!!!!

Posted in Archive, January

A subtle Reminder

Posted on by dystoniaandme

 Today I decided to have a nice long hot bath, as I felt like I had been run over by a truck repeatedly . After managing to bottom bump up the stairs, it was heavenly to be able to relax in the bath. I cannot describe how blissful it was to let my muscles relax in the heat. However it turned out that the relaxation was not to last. Without thinking I poured the shower gel onto my right hand. Immediately my right hand and arm went into a rather painful spasm.

This was rather disappointing, as for the last few weeks my arm and hand have actually behaved rather well (as long as I am not cold), and I had reached a stage where I was not to worried about it if I was indoors. The only reason for my arm and hand going into spasm, which I can think of, is that the coldness of the shower gel on my hand, in comparison to the heat of the bath, set of the Dystonic reaction.

This seemed to then set the tone for the rest of the day. I attempted to get on with the day and relax, however my little Dystonia alien seemed to have other ideas. My leg over the whole day has played up, so I have tried to avoid using it as much as possible. During dinner my arm and hand again went into spasm, after I attempted to pick up my spoon with my right hand. This spasm then went on to last a good 40 or so minutes before relaxing.

However I am trying to think positively as this is the first time in awhile that my right arm and hand have played up. This is a reassuring thought, so I am not panicking to much. Today has reminded me that I cannot take the days when bits of my body behave for granted! I need to value each day of peace, as there is no way of knowing what will happen one day to the next!

 

Posted in September

Who is in control?

Posted on by dystoniaandme

One normally feels in control of their body, if they want to pick up a pencil or smile they can do see without a second thought. So who is in control of mine?

In July I lost control of my mouth, then in august I lost control of my eyes, and now in September I have lost control of  the majority of my face, my right arm and hand. So who is in control?

Dystonia is a neurological condition so therefore it is the basal ganglia that is in control of me, or at least that is what the medical profession say. Personally I have an image of a tiny little alien bouncing around inside my brain with a wicked grin on its face, cackling away to itself whilst deciding what part of my body is going to do what today.

So little alien if you can hear me, as much as I can understand that what you are doing in there must be a hell of a lot of fun, could you give me an hours break? Just so my muscles can relax.

xx