Tag: spasm

Posted in Archive, October 2013

Short Term Goals

Posted on by dystoniaandme

As I have mentioned before my body does not react very well to me getting ill, even colds cause my Dystonia alien to act up more than usual. Therefore I have spent today spasming, having seizures and trying to find the energy to get things done. I have not slept well the last few nights which I know will be aggravating my symptoms – thankfully I have reflexology tomorrow which should help with my sleep.

I have spent a lot of time thinking today about goals. I have lots of long-term ones that I am determined to achieve, but it occurred to me today that I also needed short-term ones as well. Goals that would keep me motivated even when I am feeling under the weather and my body is at its worst. I have decided that my first goal will be to be to walk in my splints around the house by Christmas without crutches! As I am starting neurophysiotherapy soon I see no reason as to why this cannot happen. I was walking around the house last Christmas and I shall, with the aid of my splints, be walking by this Christmas.

There is a girl on my college course who I find very inspirational. Despite being young (17), she is coping amazingly well with a combination of different conditions. One of her issues is that she cannot feel her legs – she has some very limited feeling in her upper thighs but that’s it and yet with the help of crutches she walks. Now most of the time I can feel my legs, and I have the extra help of splints, so it is time to put them to good use and start walking!

ImageI know that I may not be able to walk every day due to my Dystonia aliens games, but I will walk as far as I can every day, whether that only be walking 2 footsteps or walking for 2 hours, I shall every day walk! And I shall do this by Christmas!

 

Posted in Archive, September 2013

Breath of Fresh Air

Posted on by dystoniaandme

After Tuesday nights functional paralysis drama, I am pleased to report that my little Dystonia alien has not scared me witless with a repeat episode (so far). In fact other than a light and pain triggered seizure whilst at college yesterday, I have been rather good. I even managed to go riding on Thursday!

I spent Wednesday in bed resting, as I did not want to trigger off any spasms or seizures as I desperately wanted to attend both college and riding on Thursday. Amazingly my Dystonia gave me break from the recent dramatics and I only had to contend with my usual spasms. The normality of the usual spasms were a much-needed breath of fresh air. Both college and riding went fantastically well, with my spasms only acting up right at the end of riding – thankfully that was perfect timing,

Yesterday, for several hours my legs were functionally paralysed, this did not scare me as I am used to this happening several times a week. It turned out that it had been triggered by me strapping my splints to my legs too tightly – but hey its a lesson learnt. I now know to always check the tightness after strapping myself to them. I had a little light and pain triggered seizure whilst I was at college yesterday. I feel very lucky that the college dealt with this calmly and once I regained consciousness they let me carry on as if nothing had ever happened, which is just how I hoped they would react.

Today my body is extremely sore and I am experiencing an on/off functional paralyses to my legs. Therefore I am having a lazy day in bed. I am so happy that I am managing college and riding. I had been worried that the two would be too much for my body to cope with, but so far so good. It is days like the last few that remind me that despite being in a wheelchair and not really having control of my body, I can still make a life for myself and enjoy the things I love. I just have to remember to balance  things out… I’ll get the hang of balancing eventually 😉

 

Posted in Archive, September 2013

Benedict Blindness

Posted on by dystoniaandme

I had been worried about how my body was going to cope with college and the added stimulation. Thursday and Friday at college went perfectly with only minor hiccups,  which led me into a false sense of security. In typical Benedict style I was shown reality yesterday. As I was feeling pretty good and only a bit tired – I should have seen this as a warning sign – I decided to go with some of my family to a friend’s house warming party. It started off fine, I was enjoying myself, and even indulged in a cheeky Gin and Tonic. However soon the tiredness really hit, again this should have set of the warning lights but I ignored it and carried on chatting.

My eyes spasms, the ones that cause me to go blind due to the eyeballs being pulled up and back, started. At first they were not too long, but they kept happening and started causing seizures. Leaving at this point was not an option as my brain had disconnected from my legs, leaving me functionally paralysed.

Then it all calmed down. I thought my little alien had gone back to sleep. It turned out to be the calm before the storm. I went blind again, and this time my eyes didn’t seem to be coming back, I tried sensory tricks which failed, I even started hoping I would have a seizure as that would normally bring them back yet I was staying unusually conscious. This began to make me nervous, I was in a new environment, surrounded by lots of people who I didn’t know (they were however all very lovely and helpful), and this spasm was becoming unusually long.

The longest this particular spasm has ever lasted is 15 hours, and after an hour of being blind I began to panic that the same thing was going to happen. When I get nervous I talk…a lot, which my poor mother had to put up with. After taking some Diazepam my legs came back however I still remained blind. In the end we decided that the best thing to do was to try to get me out the house and to the car whilst I was blind and then judge what to do when we got home. Getting out of the house however was the tricky part. I had to, using my crutches and splints, walk out and down two small steps, then up two steps and then transfer back to my wheelchair. Doing this whilst I am able to see is hard enough, so doing it blind was going to be difficult. With the help of my parents and some lovely people I got down the first two steps and up one, it was at this point – just one step away from my wheelchair that I had a seizure.

I am so thankful for all the people that were around me, caught me, and helped me. If they all had not caught me I would have without a doubt woken up in A&E hooked up to IV pain relief. Between them all they managed to get me into my wheelchair, and then waited around until the space between my seizures was long enough to transfer me into the car. Thankfully, once we managed to get me home and got some Oramorph into me, my seizures calmed down and my eyes started to stay in place!

After a chat with my mum, we have agreed I am not allowed to go out/do much at the weekends for the first half term of college, so that my brain can adapt to the added stimulation and learn to cope with it. This way I can stay safe and realistically it will eventually enable me to do more.

I have to learn to take baby steps before trying to run. I’ll remember this one day. On the positive side at least I could see for some of the house-warming and had a good time!

 

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

Positive Days!

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Last Thursday my riding lessons started up again. It was the first time I’d ridden since June, so I was extremely excited to be getting back on a horse. As usual I rode Nelly who is a complete delight to ride! I went all medicated up as I knew that after not riding for so long my body was going to feel it afterwards. As it was the first lesson back, we did lots of exercises to get everything working. Riding makes me forget I am disabled, which is an amazing feeling. Feeling like a ‘normal’ person and being able to do something I am passionate about at the same time is something I am incredibly thankful for. Riding keeps me sane, the boost it gives me mentally plus the physical activity does me the world of good. The next day I was really feeling it in my muscles so I took it easy, but it was worth every ache and I cannot wait for this Thursday.

I have been very lucky that my spasms this last week have not been too bad. I have had the usual leg spasms but nothing seizure inducing. I have started having to wear at least one pair of socks on my feet as the drop in temperature has been enough to set my spasms off. It was a bit of a shock that it was getting that cold already but at the same time a relief knowing that some socks were currently enough to ward off cold triggered spasms.

Tomorrow my carers starts! I shall be having care two hours a day, four days a week, which will be fab as not only will I have company but things like washing my hair etc will become so much easier to do. I shall have 3 carers who will come in on different days, that way if one is ill or on holiday one of the others will fill in, which is great as it will mean someone who has gotten familiar with my condition is there and who will know what to do if something goes wrong.

I received a letter from my neurologist last week, which basically summarized our last appointment. I have waited for this letter so that I can take it to my GP with me as ‘supporting evidence’. The letter states that he is happy for me to IV antibiotics for my Lyme Disease, which is fantastic and much needed, it also asks him to refer me for Cognitive Behavioural Therapy for my seizures and neuro-physiotherapy for my Dystonia. I am hoping my GP will agree to arrange all three.

I am really happy at that moment  and I feel that I am beginning to get things in place. I have had reflexology today so I am looking forward to a fab nights sleep tonight.

Posted in Archive, September 2013

Craft Fundraiser for Dystonia.

Posted on by dystoniaandme

Today I attended a craft fair that was fundraising for a school and for the The Dystonia Society. I had been rather looking forward to it as it was a great opportunity to raise awareness and to restock my craft supplies – I love to crochet. The fundraiser was busy all day which was fantastic and over £200 was raised for The Dystonia Society.

About halfway through the day I got the opportunity to give a speech on what Dystonia was and what life with it was like. I was slightly nervous that I would be useless and just woffle, but have been reassured the speech was ok 🙂 . I drew on my experiences of living with generalised Dystonia, and whilst I tried to only speak in a positive way, I also spoke in a realistic manner, and sadly Dystonia is not a pink fluffy ball of positivity. I found out afterwards that my speech had reduced some people to tears, which I felt bad about, but it had also inspired several people to do their own fundraising for The Dystonia Society which is incredible!

My church has chosen there september mission to be Dystonia. So they shall also be raising awareness this month which is incredible! I feel very lucky that they have taken on this cause. It was a fantastic day today, and I am so thankful that I was well enough to go down and meet such a lovely group of people.

 

Posted in Archive, September 2013

Finding My Feet

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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, September 2013

Exhaustion

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My little Dystonia alien has been a right pickle to put it politely, for the last two days. It is doing a new spasm, which whilst I can bear it at first eventually becomes agonising. It’s one of those spasms that makes me welcome the bliss of unconsciousness that my non epileptic seizures bring. During the seizures I am completely out of it and unaware of any pain, whilst normally I hate these seizures the last two days they have been a welcome and needed break from the spasm.

My normal method of using a TENS machine, massaging the spasming muscle etc have not made a difference to this spasm. Therefore I have relied on topical medications such as volterol and oral medications such as Tramadol and Diazepam, to help me through the spasms.

Whilst these are not the best pictures you get the idea of what the spasms were doing. I am not sure what triggered this spasm to develop and am hoping that my body is fighting a bug and that is why my Dystonia is playing up. Illness always seem to worsen my Dystonia, which in this case would be a nice reality compared to the horrid thought of the spasm being here on a daily basis.

I am determined to stay positive and am focusing on all the fantastic activities starting next week, such as riding, and my reflexology training. I am extremely excited as I have had an email saying my text books are on their way. I love burying myself in a textbook so I’m looking forward to their arrival.

I am hoping that the spasms will stay away for the rest of the night so that I shall get a good nights sleep as I am completely exhausted. It is amazing how tiring being in pain is.

 

Posted in Archive, September 2013

Basking in Positivity

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The last few days have been truly fabulous! I got into college to study a Level 3 diploma in reflexology, had a meeting with the learning support team who were completely wonderful about my Dystonia, and today I have been out for lunch with two of my best friends who I had lived with at uni.

My course starts in just under two weeks, and at first will be only be for 3 hours one evening a week and then progressing to each saturday as well when we start working on clients. It is nice to have found something I can be passionate about and to study towards. Being able to study Reflexology is also rather reassuring as I can go on to work from home. I have spent months thinking I would never have a carer, but since taking the antibiotics which have calmed down my Lyme symptoms, I feel empowered and full of hope.

I was thrilled to go out to lunch with my friends this afternoon. Having lived with them at uni, I miss them a lot. I got a taxi up with one of them to the Beefeater, which was a good experience. Normally my mother or a family friend takes me if I’m going  out somewhere, so it has given me confidence knowing that I am able use a taxi service with ease. I felt like a ‘normal’ person and did not feel extremely conscious  like I normally do when in a restaurant.

Having everything go right the last few weeks and has been amazing, I have not had to fight to get what I’m after, which has been a nice change. I feel extremely relaxed. My little Dystonia alien is by no means letting me forget he is there, but I’m giving him no attention and basking in the positivity that is filling my life currently.

Image

 

Posted in Archive, August 2013

Acrobatics

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The ability my Dystonia has to twist my body into any position it desires never ceases to amaze me. Having hypermobility syndrome aids it somewhat. The two conditions are both painful and amusing. Over the last year my body has got itself into positions that are simply not natural. I always knew my hands moved in ways that were not normal, but never realised that the rest of me could.

Some of the positions Dystonia has put me in has reduced me to tears of both pain and laughter. Take for example last October, I ended up on the floor doing the splits, something that I had never done before. A month or so ago, the spasm in my leg caused my leg to turn back to front, a movement that shocked those around me and triggered a non epileptic seizure.  At other times it has caused slight embarrassment, but this is something I accepted as part of the Dystonia parcel a long time ago.

This evening I was crawling to the next room as I did not want to use the wheelchair, my right leg quickly spasmed sideways, I ignored it as it was not preventing me from moving. However whilst I was crawling through the doorway my hip went into a spasm causing my spasming leg to shoot up and my foot to become caught under the door handle. Both my mother and step dad came to help me. My mum supported me incase I had a seizure and my step dad wrestled with my spasming foot to free it. I was on my hands laughing. The situation was ridiculous. At 20 years old I am crawling around trying to have some sort independence yet even this simple act is not alway possible. It is so ridiculous that I did not feel cross or upset, all I could do was laugh it all.

Throughout the last year my spasms have shown me just what my body can do, and it amazes me. I often joke that I would make a fantastic acrobat or ballerina. Though the spasms cause pain and pull my muscles, I refuse to let it get me down. Instead I see it as a strange talent that provides entertainment for all.

After all why cry when you can laugh?!