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

Posts tagged ‘strength’

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.

 

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Staying Strong!

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!

 

My big 4.

This morning I was feeling pretty down. All I could think was why me? After everything I have already gone through in my life, how was this fair? After feeling depressed for a few hours I started to think about the way I was looking at my life. At that moment in time I was looking at it all wrong. I was allowing my Dystonia to get on top of me, and I was looking at life from the wrong the point of view.

Instead of filling my head with negative thoughts, I started to focus on the positives. These are my 4 big positives.

1) If I didn’t have Dystonia then I wouldn’t have raised over £700 for the Dystonia society, a charity that provides fantastic support for sufferers.

2) Through this, I have brought awareness of Dystonia, to not only members of the public but also to members of the medical society who had not heard of Dystonia or seen a Dystonia patient before.

3) If I did not have dystonia, then I would not have had created this blog. This blog has not only raised awareness but has also put me in contact with some amazing people!

4) Dystonia has given me strength! The strength to go out in public in my wheelchair and not care what people think. The strength to stand up to the medical society. The strength to speak out and raise awareness! The strength to carry on fighting even when things are looking bleak. The strength and the determination to show the world what I can do. The strength to keep on believing that one day there will be a cure.

 

Counting my lucky stars

This last week, has for me, been full of thoughts to chew on. This week, there has been many programmes on for Stand up to Cancer, all of them heart wrenching yet inspirational.These people have to live with a disease that may or may not kill them, their life is a huge unknown. Yet despite having this devastating illness, having to go through emotionally and physically painful treatment, and so much more, they hold their heads high and they try to live their lives to the fullest. They are truly inspirational.

This weekend particularly, I have thought about them. How much they have to cope with, the pain they must deal with. Over this weekend both my facial and foot spasms have played up. They have been both painful and debilitating. Yet I know that none of the games the dystonia alien plays will cause me any long-lasting harm. They are simply irritating and painful. A nuisance, that I must and will learn to put up with.

I have to count my lucky stars and be thankful. I may have a disease that is currently incurable, that causes pain, embarrassment and is debilitating, but with the right treatment my symptoms could be dramatically improved. My illness will not kill me. It has changed the path I was on but it will make me stronger for it. I have to be thankful for the disease I have. My life could be so much worse.

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