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

Posts tagged ‘family’

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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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

London Marathon 2014

Last Saturday my family and I went up to London to watch my cousin David and his lovely friend Sam run the Marathon to raise money for the Dystonia Society. It was such an amazing day. We were extremely lucky with the weather, and managed to get a fab viewing spot at the halfway mark. This was perfect as not only did it enable us to have a great view of everyone but it also meant we had a chance to grab David as he ran past and take a quick photo with him.

I’m thrilled to say that David and Sam have achieved their sponsorship target and have raised over £3000 for the Dystonia Society which is just incredible.  I had never met Sam before so it was fantastic to finally meet her at the celebratory dinner. Watching them run was so emotional and inspirational and I extremely thankful to them both for taking on such a huge feat.

Blog Birthday!

I have been blogging for a year today! I started my blog to help raise awareness of Dystonia and what it is like to live with it. I was inspired to do this as when I first became ill and got the diagnosis I realised just how unknown this condition is among both the public and the medical society. I decided I wanted to educate as many people as possible about Dystonia, and blogging seemed like the best starting point as society use the internet and social media so much.

Since I started this blog I have had many highs and lows, I have fought to get help, I have had many ambulance trips, and experienced so much more. If you told me a year ago how completely different my life would be as to when I started this blog I would have been adamant about my inability to cope with being in a wheelchair and would have been terrified. Now I admit I have been terrified on many occasions especially when the Dystonia spread through my body, and I don’t like being in a wheelchair, however Dystonia has made me a much stronger person and has inspired me to do my utmost to spread awareness .

I knew when I started this blog that I would have to be extremely honest in everything I wrote and not sugar coat any negative experiences as that would be counterproductive. I have tried my best to write an equal amount of positive and negative posts, however Dystonia is an unpredictable thing and it does not care whether it bring tears to my eyes with laughter or with pain. Many blog posts have been hard to write, such as when writing about my legs being affected by Dystonia I found myself in tears.

Blogging to raise awareness is just the beginning. It has been a flicker of light in the bleak unknown that surrounds the condition but if all of you who read my blog, go on to share it on your Facebook or Twitter etc then that glimpse of light shall slowly become a burning torch, which will enable change to start taking place. Change needs to happen so that Dystonia is no longer a condition hiding in the shadows of its neurological brothers. The more awareness there is, the more help sufferers shall get and the more likely it is that a cure shall be found.

I would like to say big thank-you to my family who have put up with disruptions at all times of the day and night, care for me, support me, and keep me strong. I don’t know how I would cope without you all. An especially big thank-you to my mum, who has been my rock and has put up with my tears and frustration, I love you so much!

I want to also say thank-you to all the sufferers who have supported, given me coping tips and kept me sane! Especially Karen, Shannan, Andrea and Pamela – you guys are amazing!

 

Summer Achievements

I spend 99% of my time shut up in my room due to Dystonia. Throughout the months leading up to this summer I was concerned as to how my body was going to react as bright light triggers my eye spasms (I am unable to currently wear my sunglasses or glasses as it causes a facial spasm) and I have to be careful in the sunlight as my antibiotics for suspected Lyme Disease causes light sensitivity. I had been thinking for a while now that I was just going to have accept that I would be having to spend the whole of the summer indoors.

It turns out I need not have been so pessimistic. This week I have been out in the garden several times with my family, family friends and had two BBQ’s. I was overjoyed to be out socializing with our family friends. We made sure I was in the shade so that both my body and eyes were protected. It was perfect and I had such a great time.

This achievement has left me thrilled as it has reassured me that I can enjoy this summer and the summers to come without worry. I only have to be a bit careful and that’s not much of an issue. Being out in the warmth and socializing has really lifted my spirits and left me feeling overjoyed and calm.

I look forward to seeing what the rest of the summer has in store.

 

Struggles develop strength!

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.

 

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!

 

Benedict’s revenge

I have had a rather busy and sociable week. It has been completely brilliant and was a slight taste of ‘normality’ for me. Normality and independence are something that I desperately cling to, as I refuse to give in to Benedict’s attempts to seize control and conquer my body. However, when you have Dystonia a busy day is enough to exhaust you, so a busy week was perhaps a step to far. I still think this week was so worth the last few days of Dystonic  antics though!

Benedict, my little unwelcome Dystonia alien, decided to start playing up on Friday night. My right hand/arm had gone into a spasm, and started to tremor, my head also had a tremor going on that looked like I was shaking my head to say no very fast, and my back decided to bend backwards, in an attempt to fold me in half. As you can imagine this was extremely painful and rather distressing.

Then last night my leg decided to spasm. Now normally I can just about control my emotions when my Dystonia plays up. Usually it is only a few choice colourful words that escape beyond my spasming lips. However this particular leg spasm was agony, and had me in floods of tears due to the pain. Then my arm decided to join in. By this point I was extremely upset, and rather angry at myself for giving in and letting out my emotional response to the spasm. Yet they do say that a cry now and then is healthy, so perhaps I actually did myself a favour.

Today was also eventful. Even though the day was relaxed, we just sat quietly at home, as my grandparents and my man were visiting, my body still deemed it necessary to act up. I can only presume that the many activities I have done this week had triggered the hideous spasms I have experienced over the last 48-72 hours. I woke up at 5:30 am this morning to my arm spasming and my head doing its no no tremor. Then my leg put up a big fuss when I attempted to get dressed. Through-out today my arm/hand has been having spasms and tremors often and violently. At one point I honestly though that if the spasm carried on for much longer then my shoulder would end up dislocated – thankfully it eventually ceased. At other moments in time the tremor in my arm was so violent that I ended up hitting me sister.

I have currently given in to the spasms and pain, and retreated to the quietness of my room. However I have not come here to dwell on the problematic issues that Dystonia causes. I have returned to my room, to relish in the memories of the week, to mentally high five myself for the accomplishments I have made and to look forward to the days ahead. I cannot wait for tomorrow afternoon to have a consultation with a personal trainer that I hope to work with. The beauty of having Dystonia is that you know that even on bad days that things can only get better! There is so much to look forward to!!!!

Benedict’s Obstacle Course.

 Imagine this: You wake up in the morning, your eyelids open but you can see nothing due to a spasm pulling your eyes back. You massarge around your eyes blinking violently, trying to beat the first obstacle of the day. Suddenly your sight is back! You celebrate silently, not wanting Benedict to realise you have won, in-case he wants to take revenge. Next you decide to dress quickly before he wakes up and realises what you are doing. You have your top half done, and one leg in your jeans, when suddenly Benedict strikes! Your right leg contorts, as if it’s trying to physically turn backwards, meanwhile your foot has turned under and is dragging along the floor. You stop, take a deep breath, and then start attacking your own leg. Desperately trying to get your jeans over it.

Bang! Your hurried attempts have caused you to fall backwards on to your bed. However you keep on wrestling with your leg until finally you have won. You are officially dressed. You look in the mirror, do you dare attempt to tame your hair and do your make up? With a quick glance at the clock, you decide to attempt to do it. Nervously you brush through your hair, and quickly put it up in a simple pony tail. Relief sweeps through your body. Now on to the make up. Your doing well, almost done. Then, suddenly, pain sears through your eye. Your right hand, which is holding the mascara brush, has spasmed, causing the brush to go straight into your eye.

It has now been two hours since you got up. You have finally managed to get dressed, with hair and most your make up done. Now you need to get through to the living room, so you can grab your bag. Splinting your right hand up first, so as to contain any more unwanted spasms, you slip your arms through your crutches and hop out your room into the hall way. You glance down at the shoes and bags scattered around on the floor like a minefield, and hop around them. Careful not to misplace a crutch or slip.

Now you have reached the penultimate hurdle. You squeeze yourself past the sofa and clothes horse into the living room. Reaching down you pick up your handbag, and swing it over your shoulder. You give yourself a satisfactory smile. You are beating Benedict’s obstacle course so far. You start hopping forwards. You go to squeeze back through the gab between the sofa and the clothes horse…when your right knee collides with the end of the sofa. The knock immediately triggers a spasm. Your leg is twisting side ways and upwards. Pain is taking over. Your balance is now lost. You haphazardly try to place your crutches in a position that will stabilise you. It is a losing battle. You fall backwards onto the other sofa that is just behind you.

After the spasm has calmed down, you decide to take on the final hurdle. This time you choose to leave the crutches behind. Hoping that it will enable you to pass through the dangerous gap between the sofa and clothes horse with ease. You jump up onto your good leg. Keeping your right one off the floor, bent slightly. With arms whirling round widely to prevent you from falling, you hop successfully past the sofa and back into the hallway. You have finally reached the front door! You do not have much further to go. You link your arm round a family member for support and hop out the door. In front of you lies three large steps. Each one looks like a mountain. It fills you with dread. Half of you wants to turn back around, go back to bed and claim defeat. However you hold your ground and preserver, refusing to give in to the evil Dystonia alien, Benedict. You bend your good knee, and cling to the railing with your working/free arm and hop up the huge steps.

You have finally reached your goal. You have reached the car that is waiting to take you to your doctor’s appointment. For the mean time, you have beaten Benedict the Dystonia alien.

Welcome to my life!

 

A Bit Of Retail Therapy!

Today has been the highlight of my week and has distracted me from the new issues with my leg. My mum and step-dad took me out clothes shopping, which meant that I also got to push myself in my new wheelchair!  I knew that trying on clothes and pushing myself would be exhausting, so I made sure that I paid extra attention to my right hand, so that I did not do too much and cause it to spasm.

All in all  it was a rather successful day out! I managed to get some jeans and some lovely new tops, and I managed to push myself for longer than I had expected. From time to time my mum did have to remind me not to over do, I think I got a bit carried away with having some independence 🙂 In total I think I managed to push myself for about 40 mins!!!! This was a lot longer than I had expected. When I went out in my chair briefly the other day, I only managed about 20 mins, so this was a huge improvement!! It was a tiring but fantastic day!

I am going to go and see my Doctor this week, and see if he can suggest any medication that will help with the tremor in my right leg and talk about my ideas with him, and get his views on it all. I am also going to write an email to my consultant explaining to him the change in my leg and how it is affecting me and getting his advice on what to do about it, I shall also inform him of my ideas for treating my leg and get his opinion on that as well.

Today was exactly what I needed, some laughter, retail therapy and some independence. It helped me refocus my mind on everything, and see that although my leg is bad and making things really rather difficult, it is not the end of the world. I can still go out and laugh and shop like anyone else, the only difference is that I get to sit on a comfy cushion and attempt to tone my arms by pushing myself along at the same time!

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