I have dystonia…Any questions?

Reflexology Session

May 21, 2013

Yesterday I had my first reflexology session with a lovely woman. She was able to come to my house and do it, which was perfect for me as it meant if my body reacted badly to it then I was in the best place, with easy access to the necessary medication. I was hoping that by having reflexology I would be more relaxed and would be able to sleep better.

It was a fantastic session, that left me feeling extremely relaxed. I was so happy that my body did not react to the reflexology, which enabled me to relax and actually enjoy it. During the session she concentrated on areas that related to pain, my liver and my kidneys. The reason for this is that the amount of medication I am taking will not be doing my kidneys and liver any good, so by concentrating on them it should help to detox them.

I did not do much for the rest of the day as I was extremely tired from the session. In the end I went to bed around 8pm because I was struggling to keep my eyes open. Normally I would have read a book before I go to sleep to help relax my body, but I did not even have the energy to read. Most nights I do not get to sleep till the early hours of the morning and even then I will carry on to wake up 4 or 5 times due to painful spasm. Last nights sleep was amazing! I slept for a total of 13 hours and did not wake up once! I was even full of energy today which was fantastic.

I am so happy that I was able to get a good nights sleep, it made a real difference to my energy levels today. As the reflexology session appears to have had such a fantastic effect on me, I am planning to book more and see if these improvements carry on. I am extremely hopeful that these sessions will continue to have a beneficial effect.

 

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Sleep & Dystonia

May 19, 2013

One of the things I am struggling with lately is getting to sleep and staying asleep. When I am tired my spasms tend to get worse, which makes getting into a comfortable position to go to sleep in is rather hard. Previously when going to sleep I would lie down in bed fully stretched out, however I can’t do this any more and this is proving to be an issue.

One of the symptoms I am struggling with at the moment is in my legs. I have a constant tugging sensation along with pain in my knees and thighs, which I seem to only be able to relieve by pulling my legs up. Although this does get rid of the painful sensations it certainly lessons it, however I then find it extremely hard to then straighten my legs back out again. Some nights I have had to go to sleep with my legs crossed. The pain in my legs along with the current pain in my neck caused by my new neck spasms is really impacting on my sleep.

Sleep is an important part of dealing with Dystonia. Having your muscles spasm constantly on and off through-out the day is an extremely tiring experience, which leaves you exhausted. I have often taken naps in the day just so that I have some energy to carry on fighting against the Dystonia with. Dystonia normally disappears whilst you are in a deep sleep, however when in a light sleep the spasms can appear. At the moment due to pain I am finding it extremely difficult to get into a deep sleep, therefore I am constantly woken up in the night due to spasms. This leaves me feeling exhausted still when I wake up and starts a vicious cycle.

At the moment I have taken to going to sleep with a hot water bottle under either my feet or knees to try to relax my legs, and a heated lavender wheat bag around my neck. The combination of the two is thankfully providing me with enough temporary relief to enable me to drift off to sleep. I have debated taking sleeping tablets however I am unable to do so with the medication I am currently taking.

I am hoping that by increasing the number of times I meditate a day and by starting to have reflexology done that I may start being able to sleep better. Only time will tell if this combination will help. So I shall keep my fingers crossed.

 

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Simple Lessons

May 17, 2013

Every day I have plenty of spasms. Some are short and not to bad, others last hours and cause agony, and some simply make me laugh due to the positions I find myself in, for example I once ended up doing the splits! Thankfully the muscle relaxant that my GP put me on has helped and has slightly reduced the frequency and intensity of these spasms.

Earlier this afternoon my whole body decided to spasm, it was slightly painful and was not the most comfortable position to be in, but despite that I managed to laugh through it with my mum. Knowing that the spasm would eventually release was a big comfort and made it more bearable. I have included some pictures of the spasm below, in them you can see that my eyes, neck, arms, stomach and leg are all in spasm.

In today’s culture people often seem to want to focus on what we cannot do rather than celebrate what we are able to do. Even the term Disabled focuses on it. I don’t like being labelled  but if I have to be then I would rather be termed as Differently Able, as I am capable of doing the same things as any body else, it might just take me longer, I may even do it slightly differently but at the end of the day I can still do it!

One of my symptoms causes me to go blind. My eyes go into spasm and my eyeballs roll upwards in their sockets. Being blind on and off has taught me to appreciate the beauty that surrounds me in daily life. I previously took my sight for granted, the day I went blind for the first time terrified me, I was having a big panic that I would not be able to read again. Now when I am able to read I appreciate the ability more than ever before. Control of our bodies and good health is such a precious but fragile gift that people tend to abuse. We need to open our eyes to the world and learn to appreciate what we have. Society needs to understand the gifts that senses such as sight brings us and learn to focus on the positive side of things.

I could easily allow myself to drown in a pool of negativity but by focusing on the little things in life like being able to see, and by pushing myself to achieve what ever I set my mind to, I am able lead a positive life. I have my moments of being down, just like everyone does but I wont ever let having Dystonia beat me.

 

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New Neck & head spasm.

Video

As I mentioned in yesterdays blog a couple of days ago I developed a new spasm. Its rather painful in the neck and gets a lot worse when I am tired.
I have spent the majority of today with my webcam on so that I capture this new spasm to show you all.
If anyone else experiences anything like this and has tips on what helps them please leave a comment as I’d love to hear your views.

 

Written

on May 15, 2013

Dystonia Alien Gets Creative

May 14, 2013

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!

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Struggles develop strength!

May 12, 2013

I have recently noticed that in life we underestimate our own strength and the strength of others. If you had told me two years ago that I was going to rely on a wheelchair, have seizures and suffer from agonising spasms every day, I would have told you that there was no way on earth I could deal with that. I also would have been terrified about the impact it would have on my family, my mum works full-time and studies for a degree, my step dad works full-time, my youngest sister is about to start her GCSE’s, my brother is just about to do his last GCSE’s exams and my other sister is just about to start her last A level exams, none of them would need me causing problems.

However now we are living that reality and strangely we are managing to cope. It is extremely hard and some days I have no idea how we are managing to deal with it all, but at the end of the day it does not matter how we are dealing with it, the fact that we are somehow coping is all that matters. I often feel like we are treading water and that at any minute something could go wrong, but it doesn’t.  Yes we have the odd incidence that knocks us back but as a family we support one another and that is what keeps us afloat.

There have been many evenings where my youngest sister, who is 14, has sat on my bed supporting my head and making sure that I don’t hurt myself while I seize or spasm. This sometimes upsets me because my 14-year-old sister should not be taking care of me, I should be taking care of her! Yet she is amazing and has the strength to do this, and she makes me laugh when ever I regain consciousness. My other sister and my brother have both also helped me on countless occasions. They are 16 and 18, again I want to look after them, however that’s not the reality right now.

The strength of my family amazes me everyday. Take this morning for example, I spent an hour and a half seizing and spasming on the kitchen floor, my mum also spent that time on the floor making sure I didn’t hurt myself. The rest of my family helped out, and then went around their own business like it was completely normal. I am so happy that incidences like this can be treated as normal as it takes away the ‘scary’ aspects of it.

I can’t imagine having to fight Dystonia on my own, and I am in awe of the people who do so everyday! Everything I have gone through over the last 10 months has been made so much easier by my family, I am so thankful that I have such strong, caring people in my life.

You never really know how strong you are until life decides to test you. A lesson I have learned from Dystonia is  never to doubt your inner strength, leap at every opportunity and fight with all your might every day. If you doubt yourself and back out you will never know what you are capable of doing. So embrace life and leap through every open door.

 

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Blissful Days!

May 9, 2013

I am in such a fantastic mood! Today, after about 8/9 weeks of not being allowed to ride due to Non Epileptic Seizures, I finally got to get back on Connie. It was a fantastic riding lesson, and Connie was perfect as usual! I feel so confident when riding her, and really enjoyed every second of the lesson. I had been worried about the lesson, as my dystonia had spread since the last time I rode. However I need not of worried as my body behaved itself and I managed to do everything with ease.

I am completely and utterly exhausted but in bliss at the moment. The last few days have been great! My tea party was a fantastic success, the Go Blue Movement is going incredibly well and so far I have raised over £662 for the Dystonia society! It has just been the most amazing couple of days. It has all been so positive and I have been so overwhelmed by how successful it has all been.

If you would like to help me raise money for the Dystonia society please click on this link which will take you to my just giving page http://www.justgiving.com/Rebecca-Moller1 .

And if you would like to join in with the Go Blue for Dystonia movement then either dye you hair blue or wear something blue and take a picture of it and post it on the following Facebook event page link https://www.facebook.com/events/450399491712134/?fref=ts

 

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Tea Party Success

May 5, 2013

Yesterday I threw a fund raising tea party to raise awareness and funds for The Dystonia Society. The day exceed my expectations by miles, which was fantastic! More people than I had anticipated turned up which was amazing and really added to the day! Our house was constantly filled with people drinking tea and eating a variety of cake!

What amazed me the most was how generous people were with their donations, it was really very touching! Lots of people read through the leaflets that the Dystonia Society had provided us with and asked me a lot of questions, this was fantastic as I felt that everyone there was really interested to learn more about Dystonia.

At one point in the afternoon I was shaking my sisters friends hand goodbye when my hand suddenly spasmed. I was slightly embarrassed as I was unable to let go of his hand and the spasm was just getting tighter, luckily he found it rather amusing and said it was fine and wiggled his fingers out of the spasms grasp. This provided great entertainment for everyone in the room and also showed them a glimpse of just what my little Dystonia alien could do.

By the end of the tea party I was completely and utterly exhausted, but over the moon by how much we had managed to raise! So far a grand total of £577.26 has been raised which is mind-blowing!!! Dystonia awareness week has only just begun though and my hair shall be staying blue for the week as part of the Go Blue Movement to raise awareness and funds for Dystonia. So if you would like to help me raise even more money for The Dystonia Society please visit my Just giving page http://www.justgiving.com/Rebecca-Moller1 .

Here are a couple of pictures from yesterdays fantastic tea party!

 

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The Go Blue Movement

May 3, 2013

A little while ago a lovely woman called Rebecca Sharp who lives in America dyed a section of her blue to raise awareness for Dystonia (her father suffers from the condition). I thought this was a fantastic idea and we got talking. We have managed to make it into an international movement with many people agreeing to take part to raise awareness for Dystonia.

Dystonia Awareness week starts tomorrow (Saturday May 4th) and runs until Sunday 12th May. The idea is that during this week people either dye a section of their hair blue (you can even spray dye it) or clip a blue extension in, to show support for Dystonia and raise awareness. It is really easy to get involved with and a Facebook event page has been set up which you can easily join, and you can share photos of your blue hair in! The page also has links for those who would like to donate to either The Dystonia Society (UK) or the Dystonia Medical Research Foundation (USA). Both of these charities do fantastic work for Dystonia sufferers however they are in need of funds.

It’s an easy and fun way to raise funds and awareness and I urge you all to get involved!! Every person who joins in makes a huge difference. So join in with The Go Blue Movement! https://www.facebook.com/events/450399491712134/

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April 2013, Archive

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Dystonia Awareness Week!

May 2, 2013

Dystonia Awareness Week is fast approaching, it runs from Saturday 4th May to Sunday 12th May. Last year my mum, step dad and I ran a 5k fun run up in London and raised over £700 for the Dystonia Society! However this year we had to rethink how we would raise awareness and funds for The Dystonia Society as now I am in a wheelchair the 5k fun run is out of the question.  After a quick search on The Dystonia Society website we decided that we would throw a tea party. There is also a slight competitive aspect to it, as everyone sends in the their tea party photos and The Dystonia Society judge the best.

I am also taking part in the ‘Go Blue Movement’. I am dying a section of my hair blue during awareness week to raise funds and awareness for Dystonia. The Go Blue Movement is an international movement, which started off in America! If you have not heard of it yet then I am sure over the next few days you shall hear more! You can easily take part in it by dying a section of your hair blue! If you do not want to use permanent dye, you can easily use a spray in, wash out dye!

If you would like to help me raise funds for The Dystonia Society then visit my just giving link! Every bit will make a huge difference for this small but amazing charity! http://www.justgiving.com/Rebecca-Moller1

 

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April 2013, Archive

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