Tag: pain

Posted in Archive, March 2013

Tongue Twister

Posted on by dystoniaandme

Last night my little Dystonia alien decided to play a rather amusing game with my tongue. Now he has done similar things with it before e.g the spasm causing it to poke out or to wriggle when I try to talk. However before these spasms have only lasted for minutes. Last nights tongue spasm lasted for around 45 minutes.

My tongue felt as if it had folded itself under in half. It was not painful, but it was an extremely odd sensation. I then made the mistake of trying to talk. My words came out slurred and the majority of them were impossible for my mother to understand. However I am a complete chatterbox, I love to talk! So my mother and I sat there for a while with me trying to talk and my mum having no understanding at all of what I was trying to say.

This spasm did however provide lots of laughter. My mum and I, were doubled up in fits of laughter at it. As soon as we calmed down I would try to talk to see if my tongue was behaving yet, and we would end up shaking with laughter again. It was brilliant. As much as I would hate this spasm to keep getting more frequent and longer, I must admit it was a funny evening. In a way it provided us with a much-needed up lifting period of time.

Though I do feel sorry for my mum, for once my tongue spasm had ceased, I decided to tell her exactly what I had tried to say to her for 45 minutes  which was nowhere near as funny as me telling her when my tongue was in spasm. Anyone who did not know what was going on most likely thought I was a drunken lunatic.

As much as I dislike having Dystonia, I am glad last nights tongue spasms happened, as it reminded me that even at times when I am not in control, I can still laugh and have a good time.

 

Posted in Archive, March 2013

Learning Curves

Posted on by dystoniaandme

Over the last few days I have gone from thinking from one point of view to another. The reason for this is that on Friday and Sunday night I fell. Both falls set of many hours worth of seizures and spasms. Sunday nights fall was the worst. No one was in the room with me when I fell, and I have little memory of the day itself so we can only guess what happened. However one thing I am sure of is that is I really hit my head when I fell. What I hit my head on we don’t know it could have been the piano, the computer, the box or my bed. I am lucky that I didn’t do myself  any real damage. However that fall in particular caused a lot pain, which consequently  meant that I spent the majority of Monday unable to feel my right leg as my brain had disconnected from it, which was not an enjoyable experience. On both Friday and Sunday night, I experienced moments where although I was conscious I was unable to communicate properly. I found that I could not form words or get my mouth to move. Sometimes I was lucky and I could wiggle a finger to tell my mum I was conscious. This really freaked me out and got me thinking. The following picture describes best how I have felt on and off over the last few days.

I want to live my life! I am 20 years old and spend most of the day fighting with my body, just to get to the other room to see my family. I leave my house once a week if I am lucky. I am beginning to feel slightly insane. I want to go back to last March, spend my days on placement and my nights clubbing. I want to be able to hop on a bus and go to the pub to see my friends. I don’t like not having control over my life and my body. I feel like I spend my days shut up hiding from anything and everything that might cause a seizure or a spasm. Yet even being shut up does not prevent them. I still end up in agony, struggling to control my body.

However this second image depicts the second line of thought that I have followed over that last few days. I continue to mourn for a life I no longer have, one that I may never retrieve but at the same time I might. I need to stop mourning for the life I knew and embrace the life I am currently leading. However that does not mean the I give up hope for my old life. I shall always hope that I will be able to return to some sort of normality. For the time being I have to focus on the here and now, accept what is and carry on with my life whilst fighting for control.

I need to learn how to balance having some sort of normality whilst also making sure that I do not push my body over the edge. Like everything in life it is simply a learning curve, one that with time I shall eventually master. I need to remind myself often that I have only been suffering for about 8 months, I am still at the beginning of a very long road. I need to have patience and trust that everything I go through will give me the strength to keep on battling everyday, and eventually beat Dystonia. So for now I shall take deep long breaths, stay calm, and keep fighting on.

One day I shall beat my little Dystonia alien once and for all.

 

Posted in Archive, March 2013

Doctors, Star Wars, Horses and More!

Posted on by dystoniaandme

This week has been rather busy, which has left me feeling tired but extremely happy. On Monday I visited my GP to seek some advice. To be honest he was not really able to give me any, however I expected this. I explained to him the disastrous trip to A&E the other weekend and asked if he could give us any advice for if this happened again. Whilst he was shocked by the treatment we had received, he was unable to offer any advice about what we should do the next time this happens. On the bright side he has said that we can continue to use the muscle relaxant that we were given on the Friday in emergency situations as a last resort. We are still waiting to hear back from my neurological consultant in regards to advice/explanation on why the sudden change in presentation etc.

On Wednesday I had a couple of friends round, and I had a really good laugh with them. It felt so good to feel ‘normal’. I spent the day laughing and watching Star Wars with them, which was pretty much perfect!

Yesterday I was well enough to go back to riding after having to have a week away from it. I was  completely ecstatic! The lesson went extremely well, and I managed to do more rising trot than I have managed to do before which was incredible! The horse I ride, Connie, is extremely patient, which gives me so much confidence, as I feel that my spasming limbs will not cause to much of an issue. I came home from riding covered in so much of Connie’s hair that I was beginning to look a bit like a horse myself.

Last night I attended the penultimate pain support/management/research group. As usual it was fantastic and I had a good laugh with everyone and left it feeling very relaxed. I have suggested to the group that once it finishes we arrange to meet once a month for a coffee, so that we can all continue to support each other. It is something that they all liked the sound of as we have get on so well together.

Today I am exhausted, however I am glad of this. I am not used to lots of stimulation so after having a busy few days, I am going to relax and take it easy. I also have a busy weekend planned with friends visiting me on Saturday and Sunday. This week has been perfect and I have felt so ‘normal’ through-out it. I am an extremely happy girl.

The following quote/image, is one that I say over and over to myself every time I feel like I am being defeated or that things are hopeless. Just because I have not managed to cope today does not mean that tomorrow will be the same. Tomorrow I could think of something else to try/do. I just need to keep on smiling. As long as there’s a smile on my face then I know I am winning.

 

Posted in Archive, March 2013

Two steps in the right Direction

Posted on by dystoniaandme

After a week of being in pain, I am feeling a lot better! On Friday one of the GPs at my Doctors surgery prescribed me a muscle relaxant to help with the spasms in my back, it has worked wonders! The spasm has gone, my body is no longer twisting and I can finally move around without being in pain! I am going to my see GP on Monday to discuss whether we keep this particular medication for emergency situations or if there a different muscle relaxant that he feels would be more beneficial.

Last night I gave myself a rather pleasant shock. I had gotten out of bed to do something, and I walked the two footsteps there!! My body did not react to it at all! You can imagine my joy, as I have not been able to do this since January 1st!!! Not wanting to push my luck I quickly hopped back into bed, trying to work out if I had done anything differently or if it was just pot luck. I am so happy, and I am hoping that my body will continue to progress like this.

It is such a relief for my body to finally be doing something ‘normal’ without over reacting. Now I know that I may not be able to do this again, it may have been complete fluke, but on the other hand it could just keep improving. All I can do is hope that this a good sign. Hopefully when I receive my leg/foot splint that the Surgical Orthotic department are making for me, this should help me progress with walking even more! I just have to accept each day as it comes, it’s all about taking baby steps, as there is no use trying to run before I can walk.

No matter how dark may life may seem, there is always a candle of hope flickering somewhere, you just have to look for it!

 

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!