Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘friends’

Importance of Utilizing a Support Network

Whether you are ill or not having a support system in place is something everybody needs. Everyone deals with varying difficulties in life, and whilst experiencing these a support network helps keep life ticking over and enabling you to feel like you can cope. Often during difficult times, it becomes very tempting, and easy, to simply shut yourself away from family and friends. I know personally that I would much rather deal with a problem by myself, this is simply because by talking to others the issue feels more real and daunting. However, acknowledging it and making plans to resolve it with people you trust is a key to moving forwards.

When I was first diagnosed with Generalised Dystonia in 2012 I shut myself away from most of my friends; even a trip to Tesco was difficult as I did not want others to see what had become of me and judge me. Reflecting back on this now, I know that this was more a fear of seeing others react to my spasms and having to admit that I really was having to deal with this. A huge chunk of me wanted to pretend it was simply an unpleasant dream. Despite knowing that talking amongst trusted individuals is helpful, I still fall back into bad habits whenever life goes slightly askew.

This past week I have been coming to terms and dealing with some difficult situations outside of Dystonia. Admitting that they happened and needed dealt with was a hugely difficult step, but a necessary one. My botox is a week late this time round, I am receiving it this coming Wednesday, so dealing with a combination of life being more flawed than usual and my spasms progressively increasing in severity, has been more than I felt I could cope with. This is where a support network is vital. Family and friends can help give an outside perspective on how to manage life events, and advise what steps to take. This is an invaluable tool! Sometimes though, you need more than just the loving circle of individuals. Realising this is key. I have just started talking to a councillor. This is something I had hoped I would never have to do again, but it’s been necessary and I know is helpful.

Living life with Dystonia is never going to be easy. I greatly admire every individual who does so. Realising when you need support is not a sign of weakness but of great strength. So please remember to talk to those around you. This condition drives us all barmy, sometimes we need grounding.

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Exploring Boundaries

Before I became ill I frequently had periods away from home. Whether that was holidays with friends, slumber nights with mates or living in halls at university during term time. Having independence rudely snatched away by Dystonia has been something I have had difficulty adjusting to. To a degree you could say I have refused to adjust to it and have enjoyed pushing my boundaries even if they landed me in hospital.

At times rolling over, bowing down to my alien and declaring its victory, has been tempting. However I’m a stubborn person, a trait that I am rather sure is one of the reasons I have come as far as I have in my battle against my many illnesses. Up until this weekend I had not spent a night away from my family (my mum has always slept at the hospital with me) due to the severity, complexity, and erratic nature of my health. Over the last year we have finally found a combination of medication and regular injections that has helped to manage my symptoms enough to give me a better quality of life. So I decided to embrace this new found stability (though I shall admit I still have some unexpected moments, and have almost hit my boyfriend on a few occasions), and spent the weekend in Manchester visiting two of my old flatmates.

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My flatmates Emily and Rachel are very close to my heart. I see Rachel several times a month as we live seconds away from each other still, but Emily I haven’t seen since 2012 though we have kept in touch. They were both there for me in uni when my body started going downhill, and have spent numerous occasions in hospital with me at silly o’clock in the morning. To have my first time spent away from my family be with these two girls meant a lot to me. It was also quite reassuring as they have both done their nursing training, so I was in safe hands!

Today I am shattered, after a full on weekend with the girls, a subtle reminder that although it feels like no time has passed since we last were all together I’m slightly more fragile than I was back then.

Adjusting to Dystonia

When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.

Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.

I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.

I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.

I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.

To find out more about how my Dystonia started check out my VLOG https://www.youtube.com/watch?v=HV_L-9vCGPw&feature=autoshare

Positive Neurology Appointment

On Tuesday I went up to London to see my lovely neurologist. It was overall an extremely positive appointment. I was very much in need of my Botox injections as in the days leading up to it my Jaw spasms were back. I had my usual six injections (eyes, jaw and neck) and then two my calf. We are hoping that injecting Botox in my calf will prevent the spasms that cause my feet to turn upside down.

I like to keep myself busy, but my neuro has really stressed to me that this is something that has to take a step back for now. I need to slow down, and do less than what I am doing. Doing too much puts me at risk of running myself down and making my condition worse. This is not the first time I’ve been told this but I am really going to try to work on in this now. I don’t want to put myself backwards, I want to keep going forwards and if slowing down is what it takes then I’m going to make a conscious effort to do so.

I’m not seeing him again until the 18th March, which is 7 weeks from when I saw him on Tuesday. I would normally see him every 6 weeks for my injections but there was no clinic on the 11th. This concerns me slightly as the spasms in my jaw tend to come back around week 5, and I don’t want the pain causing a seizure or interrupting my college commitments. However I have not had a seizure in a while so I am hoping that if I fill myself up with painkillers then I should be fine.

This weekend, I went out and saw friends. Now it was just at a mates house watching movies with them all, so I’m hoping this doesn’t count as overdoing it!? It was so great to sit back and have a laugh, and just feel like me again! I can do a lot more now in comparison to a year ago, but activities like yesterday make me feel like I am still in there somewhere, Dystonia and Lyme Disease have not truly taken over.

Life Is What You Make it

When I first got ill last summer I thought it was the end of the world, life as I knew it was over. What I should have thought is that my life is a bit like a snow globe and someone simply tipped  it upside down and gave it a good shake and that eventually everything would settle into the right place. Now it may have taken a while but everything is beginning to settle for example why I still hate Dystonia and battle against it, I also embrace the opportunity it gives me to make a difference.

This last week has been extremely busy. Something I am not used to and left me feeling exhausted and wiped out yesterday. I was also overjoyed. I had been busy, and not just in lots of hospital appointments kind of way but in a social interactive enjoyment filled way. It’s like a distorted mirror image of what my life was like previously and you know what I am happy with it!

I may moan that I don’t like what Dystonia does and that I hate the lack of control I have, but at the end of the day I am happy. Compared to a lot of people I have an amazing life. I am surrounded by loving people all wanting to help me, and I am so thankful for them.

This morning I had a fantastic long catch up with a good friend from school who I had not seen in awhile. It was great and it felt just like old times. This evening a lovely friend I lived with at uni is coming round for a cheeky chinese. I am able to be sociable and have a social life, and I am embracing every second of it. I have even started dating, something I thought would not happen for years.

I am doing things I thought I would never do again, that Dystonia had ruined. Now I realise Dystonia never ruined anything, it restricted me and all I needed to do was find the courage in myself to fight back and find ways to get my life back on track.

My life is my own, no matter how much my little alien tries to interfere, it is mine and mine alone.

 

Exciting & Empowering Day

Today has been such a fantastic and empowering day! I had been looking forward to today all week as I had planned to go out and see a few friends and then have a personal training session. Normally my friends would come to see me, and I would sit in the middle of my bed so that if I do have a Non Epileptic Seizure I am safe. Instead I went out to my friend’s house, and my mum left me there on my own. This was the first time I had been left in someone else’s house on my own since July 2012. This excited and scared me. It turned out that I had no reason to be scared as it went perfectly. I spent the time sitting down, laughing with them and for a few hours felt like a normal 20-year-old. This has given me confidence to venture out more, I know that eventually my little Dystonia alien will act up but I cannot let the fear of that keep me from trying to establish a normal social life.

I had not been able to see my Personal Trainer for a few weeks as my spasms had been so bad and more of my body had been affected (only my left leg is unaffected now). As usual I was really looking forward to today’s session. I love our sessions as I am doing something proactive that not only challenges my little Dystonia alien but makes me feel positive about myself.

In today’s session my dystonia attempted to act up, and we worked around it. I paused when the spasms made it to hard to do that particular exercise but carried on as soon as it released. It was an extremely good session and I only had one tiny Non Epileptic Attack and a handful of spasms in it, which I thought was fab considering it had been a few weeks and my body’s not been great recently.

My Personal Trainer and I had previously discussed trying out a TENS machine to try to counteract the spasms. Whilst my hand was in spasm, he put the TENS machine up to full power and within a few seconds the spasm in my hand had released. The theory behind this is that to use a set of muscles another set has to relax, so by stimulating the relaxed muscles the spasming ones had no choice but to relax. The positive outcome it seemed to be having amazed me, it was like having a remote control for my Dystonia alien. I have no idea if this will happen on other parts of the body or if stronger/different spasms will react so positively, however this is an exciting experiment that I am going to enjoy greatly. I am planning on videoing my hand in spasm and how the TENS relaxes it, so that I can show my consultant.

If anyone has tried using a TENS  before for Dystonia please let me know, I would be extremely interested to hear how you got on with it. You can get in touch with me by either commenting on this post or by going to this page https://www.facebook.com/dystoniajourney where you can inbox me privately or comment publicly.

 

Easter Day + Consultant news

Every Easter my family and our family friends go Egg Rolling. It’s always a great morning out. We decorate our hard-boiled eggs and then compete to see whose roles furthest without smashing. I was slightly worried about how my egg would look considering my hand hates my holding pens, however despite my hand spasming my egg turned out pretty well.

We went up to the local woods, and took the supposedly wheelchair friendly path round. I went wrapped up in several layers of clothes, two blankets and had two hot water bottles on me. It was so cold that snow from several days ago was still on the ground. I am happy to report that I survived the cold despite a few spasms and seizures – that’s another point to me Dystonia alien. It was so nice to be out and about.

Above is a picture of my egg. I’m rather proud of how well it turned out despite my spasming hand :-).

I am also happy to report that my consultant has been in touch and has agreed to administer botox injections to my jaw tomorrow! I am still waiting to find out a time, however I am extremely relieved to know that it can be done so quickly! I shall take advantage of this appointment to discuss with him the recent sudden changes in my condition.

I am exhausted but feeling much happier knowing that tomorrow I get to see my consultant!

 

Positive Proactive Progress!

As I sit here, beginning another blog post that allows you all to witness what it is like to live life with Dystonia, I must admit that I have an almighty smile spread across my face. The last few days have each been perfect in their own ways. I spent the whole of Tuesday in bed recovering from Mondays lovely trip to Chelmsford. To some of you this may seem lazy or even a waste of a day, so let me reassure you this was completely and utterly necessary, I barely had the energy to sit up! Yet I was perfectly happy due to the fabulous day I had the day before. I am also enjoying some lovely choccies that my man brought me for Valentines Day.

Yesterday one of my oldest friends came to visit me. I had not been able to see him, in a long time due to me moving to Essex for university and us both being broke students. So it was fantastic to have a really good catch up, which was full of laughter. By the time he left, my spirits were soaring. Socializing does the world of good for me, it allows me to feel ‘normal’. He has promised to come and see me more often, as now I am only a 20 minute bus ride away from him. I shall hopefully see him again in just under two weeks time.

Today I had my riding lesson. Once again it was fantastic, I love the thrill riding gives me. There is nothing like it. The horse I ride, Connie, is so very lovely and patient, and puts up so well with my different style of mounting. We did lots of trotting whilst weaving in and out of cones today, which I loved. Towards the end of the lesson, with my instructor watching carefully, I stood up in my stirrups, whilst walking. I managed this fairly well, now and then my right leg would decided it had had enough and would shoot forwards, causing me to sit/drop back down into the saddle. However every time it relaxed again I stood straight back up. We did the exercise repeatedly until my right leg really had had enough and I lost the feeling/connection to it. Riding is not on next week as it is the local school’s half term holiday, so I am counting down the days until the 28th when I can go back.

Yesterday and today, I attempted placing my foot on the floor to see how it would react. When it was placed flat on the ground, it spasmed rather violently, and I had to wait a fair while for it to calm down. Once it had, I tried it again, though this time I only placed my toes very lightly on the ground. This time there was no reaction. This is good progress!!! I plan on doing this a few times a day, if this all goes well then in a weeks time, I shall attempt to put my foot flat on the ground again. I hope if I keep trying this, then I shall be able to get back some of the movement I had managed to build up back in December.

This week has truly been fantastic. With only one real hiccup,  my right hand decided it had had enough of me writing and decided to spasm violently. I happened to be holding a fountain pen at the time, so ink ended up all over my face, hand, quilt etc. However I found this to be quiet amusing.

I have several more brilliant days planned, which I am really looking forward to! I know that I am going to be completely exhausted by the end of it all and my body will most likely try to get revenge, however it is worth it! I have accepted that at this time because I have Dystonia and Non Epileptic Seizures, I am disabled, however I refuse to let these conditions control my life. I am going to live life the best I can, and I shall enjoy every second of it.

Just watch me!

 

Today’s Thoughts

My jaw is still in spasm, which is really rather painful. However on the positive side of things, my medication, has really helped and my spasms in my right arm and leg have not been that bad these last few days. The pain in jaw can get rather intense and this tends to cause me to have a Non Epileptic Seizure. I am getting better at identifying when I am going to have a seizure. This means that I am able to inform someone, like my mother, seconds beforehand. This is a huge step and a big positive, as it means that whoever is with me, can try to prevent me from injuring myself during in a seizure. I am hoping that I will hear from the consultant soon, so I can get treatment for my jaw, which in turn should hopefully mean that my seizures will disappear again.

The path my life has taken, at this moment in time, is not one I would have chosen for myself. You would have to be fairly crazy to want to have Dystonia. However I accept that for now Dystonia is part of me, and I cannot magically make it disappear. Dystonia is one of those conditions that on some days is fine and does not play up that much, on other days, it is a gigantic pain.

I am so thankful to my family, friends, and all the many people who contact me to support me. They are all amazing and help me stay strong on my bad days. They help me laugh my way through the spasms, and make sure I don’t hurt myself to much during my seizures. I really don’t know how I would have coped with Dystonia without all these wonderful people in my life!

The battle for my leg

Yesterday the little dystonia alien decided it was bored of manipulating my face, arm and hand. It decided it needed yet another toy. It chose my leg! For a long time now my leg has not been completely normal, every now and then it would over bend or I would get odd sensations running up and down it. I choose to ignore these niggles and put it down to issues I had had previously with my leg. However the last 4 or 5 days these niggles had got more frequent and were more noticeable, I decided that now was the time to speak up and express my concerns. So off we went to the doctors and yet another medicine was added to my cocktail of drugs, in attempt to try and lessen the dystonia aliens effects.

Yesterday the alien decided to up its game again. Instead of causing the usual niggles, it decided to cause a painful spasm that twisted my foot inwards and curled my toes up, then it decided to shake violently. The alien decided to do this each time I attempted to walk. In the end I could just about walk on the tips of my toes, however sometimes this set the alien off as well. So I spent the day hopping around, trying to get on with the day as usual and attempting to distract my self. However when I got up to try and walk today, I decided to try and walk normally, hoping that the spasm would not return. But after taking two steps the alien decided to play games, the spasms once again twisted my foot inwards at a bent angle and curled my toes up before shaking violently.

Due to the little dystonia alien also affecting my right arm and hand, I cannot even walk with a crutch, as holding a crutch would set off the spasm in that hand and arm. Therefore I have had to resort to using a wheelchair for getting out and about. Its not a ideal option but for the time being its a realistic one. I went out shopping with my parents to get a few bits today in my wheelchair. At first I was bit anxious, I knew that now more than ever I would be stared at. However once again I found that the stares just reassured me that I could do this, that I didn’t mind. After all, if it was the other way round I would most likely also be just as rude and look.

I feel so thankful for the support and love I get from my family and friends. Without them it would  be a much harder battle with dystonia. With their love, help and support, I am able to get on with daily life and be happy. I know that no matter how hard things get, they will always be there for me. I am so thankful for them!

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