Tag: Botulinum toxin

Posted in Archive, March 2013

Life Challenges: Would you fight or would you run?

Posted on by dystoniaandme

At 20 years old I didn’t expect to feel like my world was crumbling around me. I thought that I would be out clubbing with my friends, or trying to stay awake during a night shift on placement. I expected to be having the time of my life. The reality is extremely different to the expectations I had.

Today I felt like life was trying to show me just how difficult it could make my life. I knew this weekend would be a hard one anyone due to personal things, however it has so far been hell. Yesterday afternoon until I went to bed, my hand did an extremely painful spasm, that resulted in me having hours of Non Epileptic Seizures, with only a few seconds of consciousness in between. Then today I have spent the majority of the day unconscious having seizures. Again these were caused by a bad hand spasm.

I feel like every bit of normality I had (e.g uni, relationship, walking, freedom) has been cruelly snatched away from me. I have to fight constantly with different government departments, with the NHS, and with my own brain. I won’t ever give up, but at the same time I am already very emotionally and physically tired.

Today due to spasms and seizures I have not been able to get out of my bed. I have felt so many emotions, such as anger and sadness, in some ways I feel as if today has defeated me. Now I know I will get up tomorrow and continue to fight, but I should not have to fight! Days like today I dread because of the way I feel physically and emotionally. I am lucky that bad days are few and far between. I have not felt this bad since January 1st. I will never stop fighting Dystonia, just like I will always campaign to raise awareness of it.

I keep thinking how silly it is of me to get so upset over everything that has happened to me. I could be so much worse off. I guess in a way I am grieving for the life I had, whilst carefully trying to create some degree of normality for myself. Life challenges us all in different ways. Whether we run screaming away from them at the top of our lungs or battle it with all we have, is up to the individual. For me I shall battle on, whilst knowing that on some days Benedict is going to have won and I am going to be unable to cope, but that is just at that moment in time. Who knows how I will feel the next day or the next month or even the next year! I need to learn when to accept defeat for that day and start preparing myself to battle on the next.

Image

 

Posted in Archive

Life through my eyes.

Posted on by dystoniaandme

When someone gets diagnosed with a condition that it is going to make an impact in some way, it is then that people show their true colours. I am sure many of you are aware of this or have even experienced it. For me it happened gradually, some people quickly disappeared out of my life, some stuck themselves firmly to me, and others decided to bow out later on into it. Although losing people you were close to is a painful thing, it also shows you the people who truly care about you.

Since being diagnosed with Dystonia I have met the most amazing people, with such beautiful souls. To them they don’t see the wheelchair and its occupier, they see a girl whose personality counts more than her physical capabilities.  For example, the incredible volunteers at my local riding school, who are part of the Riding for the Disabled Association. They are such vibrant beings, who managed to get me on a horse, despite all odds. There are no words to describe how much I love these volunteers, how much joy they bring into my life. Then there are my uni friends. They are such loving people. Despite the fact I moved back home, they are always there for me when I need them. They have rushed me to hospital at 2am, and joined me at many hospital appointments and a&e visits. Then there are the amazing people I know/have met through day-to-day life, who are caring and inspiring individuals.

My family has been amazing. They have coped with the spasms, the hysterics, the seizures, the pain, the hospital visits, the hospital admittances, the day-to-day challenges that Dystonia brings. It is their ongoing love for me that helps me through each and every day, that inspires me to keep fighting for control of my body.

At this time all the people above and so many more that have stayed close to me, have been a fantastic fountain of support. They help me through hard times in my personal life and with Dystonia. They show me the light, on days when I feel like hope is gone…and then they hand me some chocolate buttons.

Life is tough for everyone, in different ways for whatever reason. We are challenged by different issues. Some may seem big or small to others but you can never judge how a challenge is affecting someone without experiencing it yourself in their shoes. I can only hope that everyone has a support network like mine. As you never know just when you will need it.

Today has been a good one, full of much-needed distractions. I went riding and despite falling out the front door on the way there – I am ridiculously clumsy – I still managed to do rising trot without setting off a spasm. I am so lucky to be surround be such fantastic volunteers when I am up there, and I ride an incredibly patient horse who I completely and utterly adore! I also attended my pain support/research group. It is a fantastic group which does me the world of good. I can be so open and honest as everyone there can understand to a good degree what I am going through, yet I can also laugh with them at the same time.

Life is too short to be defeated by inconvenient challenges. Just because my brain has decided it does not want to work, does not mean I should hold my hands in the air and admit defeat. If anything it should fill me with determination to show my Dystonia alien just what I can do. My life goals may have to change because of it, but by no means should they get any smaller, if anything I should aim higher. You never know you may one day see me at the Paralympics, or I may be a best-selling author. Who knows what could happen! Who knows what life has planned for us! Embrace whatever style of life you have! Mould it to suit you, push you boundaries and never give up.

I think the picture below sums up my thoughts perfectly.

Posted in Archive, February

Hospital appointment & My views on the majority of Doctors I have met

Posted on by dystoniaandme

Every time I attend a Doctor or Hospital appointment, I go with a calm, polite manner, banishing the memories of the countless impolite Doctors I have met before and hope that the one I am seeing will be a good listener and polite. Yet 97% of all the Doctors I have met have squashed my hope.

Yesterdays appointment was not for Dystonia, however Dystonia still managed to impact it. It started like all Hospital appointments, I waited to be called through and when the Consultant did call me through he seemed to be polite. This helped up my hope for a nice Consultant. So you can imagine how devastated I was at the end of the appointment, when I left wanting to tell him exactly what I thought of him (I refrained from this and kept up my polite attitude). Through-out the appointment he talked over me, consequently he ended up having to ask me the same question 4 or 5 times, as he never let me say more than 3 words before interrupting. He made me feel like a complete inconvenience and that the procedure he would have to carry out at a later date was even more of an inconvenience.

This feeling was proven to be correct after I expressed my concerns that the procedure may set off a Non Epileptic Seizure or a spasm, to this he replied “Well, we shall to give you a small sedation in your hand before hand. I cannot see why we have to, it’s rather inconvenient”. I immediately apologised and explained I was not trying to make things difficult for them, I was simply expressing my concerns as I did not want to turn up on the day and then the procedure not be able to be done because I had a seizure etc. However I do not think he listened to a word of this, as he went on to keep expressing that the 3 changes that had to be made were a huge inconvenience for him. He then expressed that he felt the issue I had suffered with for 6 months was most likely not serious, this was great news, however he then implied that he considered that whatever was going wrong in my body to be due to my weight or my disability by saying “it would not surprise me in someone like you”. Now I understand that he most likely was not trying to insult me however to me that came across as a dig at either the fact I am overweight or the fact I am disabled.  The appointment just kept going down hill from there.

Now I understand that not all Doctors are like this, and there are some who are genuinely nice people, who want to help you, such as my Neurological Consultant and my GP. However the majority of the Doctors I have met are arrogant, insensitive and extremely bad listeners. These traits that do not go well for a Doctor. Even if you do have these traits surely you could at least act like you were listening and wanted to help! I am fed up of Doctors talking to me as if I am not a human but just an illness, or not listening to me etc. I am a human, I have feelings and I deserve to be treated with respect. I would not dare to be disrespectful to a Doctor, or insult them, so why on Earth should I be expected to put up with it??

I know from talking to many people, all with different types of conditions, that running into these types of Doctors/Consultants is becoming a frequent issue. I have seen patients leave appointments in floods of tears. On placement, there were occasions where I was left to deal with the patient myself, and calm them down after they had seen their Doctor. This is not right! A person should leave an appointment, feeling like they have been listened to and that their Doctor is going to try and help them.

It is terribly sad that the Doctors who care seem to be so few and far between. I count myself to be extremely lucky to have two that actually want to help me, who listen and respect me. They truly are outstanding in their profession  Every Doctor should take a leaf out of their books. I can only hope that with time, Doctors start to change, that they start seeing patients as vulnerable beings who have come to seek help from them and not as inconvenient illness that has been shoved in front of them.

 

Posted in Archive, February

Benedict, Dystonia, Rugby & Wine

Posted on by dystoniaandme

This morning  pain has slowly been spreading down from my TMJ area into my jaw. I had done my best to ignore the pain, distracting myself with getting things ready for tomorrows hospital appointment (a non dystonia related one). However the lack of attention I was paying, seems to have seriously offended Benedict. To punish me, he has chosen the most painful part of me and decided to twist and pull it in as many ways as he can possibly find.

The right side of my face/lips has been pulled diagonally upwards and outwards. Consequently my right eye has been forced shut and it look like I am trying to bear half of my teeth. I must admit, if I was trying to scare someone away by bearing my teeth this spasm would do a very good job. The left half of my face/lips has been pulled diagonally downwards, and the whole of my jaw has been shoved to the left as well. I feel like my face is going to rip in two and my jaw is going to dislocate!! It is disappointing that despite having Botox not that long ago, Benedict is already able to manipulate my jaw. I have at least 4 weeks to go, if not more, before I can have any-more Botox injected.

Having Dystonia in any part of you body is a horrific thing. However now, in this moment of time, I would rather have my hand or my foot go into spasm. Whilst they are still ridiculously painful, I find them a hell of a lot easier to deal with. With the way Benedict seems to be playing with me today, I am sure that he will find some twisted way to add my wish to today’s neurological games.

I am refusing to let this spasm get the best of me though! I am going to enjoy today’s rugby match – Come on Scotland – I am going to have a nice glass of wine or Disaronno, even if I have to drink it through a straw, and I am going to relax. I am hoping that my pain medications kick in soon! Before I do anything else today I am going to meditate, as I often find this to be a very helpful way to help keep myself calm and to put off any unwelcome seizure.

 

 

Posted in Archive, February

Dealing with Dystonia in Day to Day Life

Posted on by dystoniaandme

The last few days have been rather interesting and positive. We have upped my Gabapentin even more, so that I am now taking 900mg three times a day. The reason for upping was a) to try to counter-act the tremors that had started in my leg, arm and head, b) I was intrigued to see if an increase dose would help enable my attempts to get back the ability of walking I had before the unfortunate incident on New Years day. I find that when it comes to increasing my does of Gabapentin, it is necessary to do this in baby steps. I am lucky that the only side effects this particular medication causes me, is when we increase the does, and even then these effects only last 24-48 hours.I find that an increase in the does, no matter how small, turns me into an irrational weeping wreck! I feel extremely sorry for people who encounter me during this. I am not going to up it any more for a while, as I do not want to get to the highest dosage and then find that it is not giving me any more benefits than the original dosage had. I do think that whilst the increased dose has not stopped these tremors, it has decreased them significantly, which is a huge relief! I have also received a letter from Surgical Orthotic’s with a date to seem them! I am hoping they will make me a brace to help me deal with the Dystonia that is affecting my leg! I am really looking forward to this appointment!

As many of you know, I had my last lot of Botox treatment for Ormandibular Dystonia back in January (on the 15th I think). Previously Botox has worked amazingly well for me, which led me to be rather naïve and presume that this would always be the case, or if did start to be less effective it would be later down the line after a few years of treatment. However my last treatment course only lasted 8 weeks, and this course seems to be heading the same way. I think it has been around 5 weeks since the injections and yet my little Dystonia alien is already trying its best to play with my jaw. Yesterday morning, just eating my breakfast set my jaw off into a spasm that caused the jaw to physically deviated (I am hoping this was just a one-off). Within seconds I went into one of my Non Epileptic Seizures, and then a few moments later I had one of my ‘silent’ Non Epileptic Seizures.

I have made a little of note of this, so that I can talk to my Consultant Neurologist about how quickly the Botox is wearing off. I know from his letters that he injects a lot less than my maxiofacial Consultant did, so I am going to ask if an increase in dosage could be considered, or if he can suggest anything else that we can do.

Last night I attended my pain support/research group, which as usual was a bundle of laughs! I entered feeling very stressed due to the fact that I  had my emotional imbalance from the Gabapentin dosage increase going on and the cold had set a spasm and tremor off in my right arm/ hand and my head. However by the end of it I felt full of energy, was laughing hysterically and was so relaxed. I even lowered myself out of my wheelchair onto the floor and did all the stretching exercises and partner exercises with them. This support/research group really does do me the world of good!

A few weeks ago, I decided that I wanted to lose some weight, get fit and just generally try to keep myself healthy. A friend, who also has Dystonia, recommend finding myself a Personal Trainer, so I rung around all the gyms in my local area explaining what Dystonia was and that I also suffered from Non Epileptic Seizures. Many of them literally freaked when I started explaining it to them, which I can complete understand, however I eventually found someone who was prepared to take on my neurologically faulty body!

After meeting him on Monday we decided it would be best do sessions from my home, he then came round to assess my house and what I was able to do today. I must admit I was amazed at how well my body behaved!!! My arm had the odd moment, as did my eyes, but overall it was great. I was able to do so much more than I had originally expected to be possible.

Things are really looking up at the moment! I am adjusting to this ‘new life’ and learning new ways to approach things. I am slowly building confidence back up in myself, and don’t get out of bed everyday terrified of my body. Instead I get up with a can do attitude, accepting that my little Dystonia alien may make things difficult for me, but they are not impossible!!!

Lastly, a massive thank-you to everyone who voted for me in the WEGO Health awards. I was up for three awards, however I have not made it through to the finals, but there is always next year. It meant so much to me that so many of you nominated me!!!  So Thank-you!!!

 

Posted in Archive, February

Late Night Antics

Posted on by dystoniaandme

Yesterday my body was seemingly well-behaved. The only time it got irritated was when I went out for an hour or so, and my foot really did not want to be put in my shoe, and my eyes went blind a few times due to the lighting. However all in all, I found this to be an extremely positive and promising day.

As I was still feeling shattered after the busy week I had had, I decided it would be best to go to bed early. Meaning that when I went to bed, I would actually go to sleep and not pick up Harry Potter (I am rereading the series for what must be the 40th time) and read for hours. My little Dystonia alien, Benedict, however had other plans for me. I was just beginning to drift off to sleep when I felt the familiar tightening sensation in my leg and foot. I decided to ignore this and carried on trying to get to sleep. Benedict, unhappy that he had not managed to grab my attention, then decided to bend my foot as far back as it could possibly go. This roused me, however I tried to stay calm, and implemented my breathing exercises from my meditation CD. My leg then started doing two rather painful movements. It seemed to be trying to rotate so it was completely back to front, whilst going slightly upwards and pulling outwards, as if trying to go in the air whilst attempting to dislocate itself. This completely woke me up, with all hope of sleep gone,  I flipped myself over, so that I was lying on my stomach, to try to counteract the spasm by forcing it into the mattress.  I then started doing distraction techniques, such as making my good leg do movements, reciting lyrics in my head etc. In the end I switched on my Ipod, and just focused on my breathing. I did this to not only to keep me calm, but also to try and lull my body into a state of relaxation.

It was 3 am by the time the spasms relaxed, it only took 5 long hours, and I was finally allowed to drift off to sleep. Whilst this was an irritating experience, as I like and need my sleep, it was also a positive one. I manage to cope with it all without panicking. I kept calm, and did all the distraction techniques I knew, and tried each one for a fair amount of time, before allowing myself to give in and just let the spasm run its course.

Today has been a fairly good day. My Dystonia had not been that bad, so I am rather happy. I did not have my usual soup for dinner today as I am trying to up my protein intake, so I had mashed up fish fingers, mashed potato and beans instead. Whilst this was nice and extremely filling, it sadly set my jaw off. Recently when my jaw spasms, it has just been my lips going – thanks to the Botox treatment. However this evening my jaw also deviated to the left when it went into spasm. Thankfully the deviation was nowhere near as extreme as it has been before. I am hoping that this deviation is a fluke, as my last lot of Botox treatment was only administered about 5 weeks ago, so I still have 7 more weeks to go before I can have any more.

I am hoping for a quiet and relaxed day tomorrow. Which will be full of positivity!

 

Posted in Archive, February

It is just the beginning…

Posted on by dystoniaandme

I found this picture earlier on today, and felt that it would be appropriate to share it with you all. Yesterday I was rather down in the dumps due to having a bug for a few days and my Dystonia was playing up big time, then I got emotional about all the changes it had made to my life. This picture really got me thinking about the situation I have found myself in.

Dystonia is life changing! I am just at the beginning of a life long road and it is going to take time to adjust to everything. However just because parts of my life are no longer the same does not mean that it is all over and that it is time to give up. I need to recognise and accept that I am going to have down days now and then, where I grieve for the parts of my life I have no longer have. Yet at the same time I need to recognise the amazing things that have happened to me since the Dystonia hit me, such as the people I am in touch with, going back to riding, etc. If I did not have Dystonia then I would not have set myself a new life goal, I would never have even thought about aiming to compete at the Paralympics, but now that is something I strive to do.

It is going to be a long journey, and the beginning is always the hardest part, but you never know what is waiting for you round the corner. You only live once, you need to make the most of what you have!

 

Posted in Archive, January

Wibbly Wobbly leg

Posted on by dystoniaandme

Since my last post my ability to move around has deteriorated rapidly! The shake/tremor in leg has become extremely violent and my leg feels like its made of jelly. The force of the tremor physically shakes the upper parts of my body as I try to hobble about. I have never had a sense of balance, so you can imagine how hard I am finding it to stay upright, when my leg is shaking me to the point that I would fall if I was not being held up. This tremor has made my knee extremely painful, the other night the pain was so excruciating that I ended up having a Non Epileptic Seizure.

I am trying to work out whether this tremor is a new development to my leg or if it is a development of a Dystonic movement that was already happening. You see, often when my leg goes into spasm, as the spasm is about to go, my right leg would shake like mad. The way I always thought of it was that my leg was shaking away the spasm, this sounds silly but it was a comforting thought, these tremors would last from to seconds to a good couple of minutes. I think it is likely that this new issue is simply a development of the previous tremor, as Dystonic movements do develop (get worse).

However this creates a whole new ball game. I know that with Dystonia, you cannot really forward think, as you never know what will happen from one day to the next. Nevertheless I find myself having to think forward, as I like to have some sort of plan in place. After speaking to someone with similar leg problems to myself and hearing what they do to manage their symptoms, I have had an idea which I would like to discuss with my doctor. I want to put across to him the idea of getting a knee or leg brace. I have previously used a splint for my hand spasms and I found this very helpful in containing the spasms and most of the time it prevented the spasms from getting too extreme. As this worked well for my hand, I think it would make perfect sense to try out on my leg.

I shall of course listen and take on board anything my doctor suggests, I presume he shall offer me some sort of muscle relaxant to help, and I shall happily do/try whatever he wants me to. However I think I shall really press this idea. After looking into it more, I have read about a number of people who have tried knee or leg braces and found that they had good experiences with them. I plan on waiting a few more days before I go to my doctor. I had originally planned on waiting two weeks before I went but I don’t think I can deal with the pain the tremor is causing for that long. The reason for waiting is so that I can go and say, this has been happening, I believe it is a development of a previous movement, its been having for X many days and this is what I want to suggest. For me, I think this is the right approach to take with my doctor.

Who knows what will happen, I can only hope that he decides to give my idea a go! Until then I am going to avoid moving around as much as possible, so that I do not cause myself any more pain!

 

Posted in Archive, January

Staying Strong!

Posted on by dystoniaandme

I saw this photo/quote, and felt like I should share it with you all.

I, personally, find its words to ring true. As much as we wish life was perfect, nobody’s life is. Everyone has their own struggles in life, be it financial, domestic, illness, loss etc. At some point in life we will ask ourselves, why me?! Why am I having to go through this, I can’t deal with it! If you have not asked yourself this yet, then I am sorry to inform you that eventually you will. However when it comes to that point in time, when you are asking why me? That is when you must remember that if you were not strong enough to deal with it, then you would not be going through it. The experience may make you feel like it will never get better, and that is the moment you must remember that it will get better and that whatever you have had to struggle through, will make you a better and even stronger person at the end of it.

I have asked myself, why me, so many times recently. The question normally arises when I am going through a particularly bad spasm or am in a lot of pain. However, each time the pain stops and I relax, I can think more clearly, and I know that I would much rather go through this than see a member of my family, or anyone else go through it. I know that I am strong enough to deal with it and that’s why it is me who has Dystonia.

It is up to us to make the best out of a bad situation. For me, I have decided that instead of curling up in a ball and letting myself become a ‘sufferer’, I shall instead be an advocate for the condition. I shall try my best to make a difference! You never know, I might!

So if you ever are thinking, Why me?! Remember the above quote and know that if you were not strong enough for this life, you would not have been given it!

 

Posted in Archive, January

Care Plan in Place

Posted on by dystoniaandme

 

Yesterday I went up to London for an appointment with my consultant. I went prepared with many questions, and was determined to get everything I needed done. I left the appointment feeling very happy and relieved! My consultant had been extremely apologetic about the delay in getting back to us and the delay in administering treatment. He assured my mother and I, that this would not happen again, and that we were to email him if something else happened or when I needed my next lot of Botox done.

My main aim of the meeting was to leave with a care plan in place and to have received my Botox treatment. I was rather pleased, that instead of me having to ask for this, he brought the subject up himself. After feeling my Ormandibular Dystonia, he agreed to administer the Botox into both sides of my jaw. This lifted a massive weight of me, as I have stressed about this for weeks. It is a huge relief to know that in about a weeks time when the Botox kicks in, I will be feeling so much better!

My consultant has also referred me to a short stay physiotherapy/rehabilitation scheme at the hospital. In which they will admit me into the hospital for five days, and give me intensive physiotherapy/rehabilitation, they will also send me home with physiotherapy exercises to do. I am still on the waiting list for inpatient treatment on a longer basis, however the waiting list for this is a year-long. He is also referring me to one of my local hospitals to receive outpatient CBT, to help me deal with my Non Epileptic Seizures. The idea of this is to help give me methods to deal with pain, as my seizures are  triggered by extreme pain.

Another big plus is that he is more than happy for me to start riding at my local stables, which once a week hold lessons for the disabled. He thought it was a very positive idea! I am over the moon as it means that I can get back on a horse!!!  Hopefully (depending on the weather) I shall be having my first lesson later on this week, if the weather does not improve than I shall have my first lesson next week!

Yesterday was so positive, and has restored my faith in my consultant. I had gone to my appointment ready to fight to get treatment, instead it was all offered to me with out me having to ask! It is a huge relief to know that in 7-10 days time, the Botox will have kicked in fully and I will not have to worry about my jaw going into spasm for a while!