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

Posts tagged ‘support group’

Doctors, Star Wars, Horses and More!

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.

 

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Life through my eyes.

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.

Amazing Progress!

Today has been truly wonderful! I had my third R.D.A lesson, and I made so much progress today. I really shocked myself! In the last two lessons I have had, I have had a leader and two volunteers on either side of me, so that they can catch me if I have a Non Epileptic Seizure whilst on the horse. However at the start of my lesson today I only had a leader, and by the end of the first ten minutes it had been decided I did not have a need for a leader!!! This was fantastic and I was extremely happy.

We spend the majority of the lesson in trot, and practising changing the rein in trot etc. This I adored, as I was being allowed to do even more than I had done in my previous lessons. I normally just do sitting trot and I just try to stay as still as possible in the saddle, however as my Dystonic leg was behaving rather well today, my instructor and I decided that I should give rising trot a go. I was slightly nervous at the idea of it, as I did not know how my leg would react. It turned out that I had no reason to worry!! I put as much weight as possible through my left leg (the working one), and started doing a slightly lop sided (but who cares about that) rising trot. To say I was in heaven would be an understatement. I felt so carefree and alive. I could have cried with happiness when I realised that all my leg had done in reaction was to twist sideways!!! This was such amazing progress and has given me so much confidence!!

There are not enough words to describe how much I love riding!! I treasure every single second of it, and feel very lucky to have the opportunity to ride among such a vibrant and supportive group of people.

I also attended my support/research group. As usual I had a laugh with the group, and really enjoyed the session. I had also made progress in the group, by being able to do some of the relaxation methods more successfully than I had managed previously. I left feeling very relaxed and over-joyed from having such a great day, full of amazing progress!

 

Yesterdays R.D.A Lesson & Support group

Yesterday I had a lesson booked with the R.D.A, I was a bit nervous about this due to the new tremor in my leg. I had emailed my instructor in advance to let her know that it may be slightly more difficult than usual to get me on. Her reply made me grin “Tremor or no tremor, we will give it our best shot”! She stuck true to her words, they gave it their best shot and managed to get me on! I hopped up the mounting block, then with my arms round two volunteers shoulders they lifted me up on to Connie so that I was sitting side saddle, I then swung my Dystonic leg over Connie’s neck and slid my feet into the stirrups.

After about a minute of having my feet in the stirrups my right leg decided to spasm, it shot out sideways and upwards. The volunteers and my instructors remained very calm and Connie did not even notice. Thankfully it was not a long spasm, once it had passed we agreed that until my leg had settled down completely, I would ride without the stirrups. I was completely fine with this, and happily rode round without them. After a while, when I was certain it was OK to risk putting my feet back in stirrups, I did so, this time my body did not react.

My riding instructor does fantastic lessons, and I was allowed to do a lot more trotting this time. We did trotting in general, trotted in and out of cones and over poles, it was complete heaven! The three volunteers that stayed beside me, kept saying that you would never know I was disabled if you watched me ride, as I sat so well and had good control. I must admit them saying this really made my day! I have to have three people around me at the moment when I ride, due to my Non Epileptic Seizures, as I only had my last one a few weeks ago, so we have to play it safe.

I cannot put into words that happiness that riding gives me. I literally sit and grin the whole time I am riding, taking in every magical second of it! I cannot wait until next weeks lesson!

Last night I also attended my support/research group. I love these meetings, they are so mad and positive that I just there and smile. Despite both my leg and arm playing up whilst I was there, I had a fantastic time. The group is extremely supportive and I find that the different methods we are taught for coping with pain are extremely helpful.

Overall yesterday was an absolutely brilliant day. It was so worth the aches I have today. Despite the aches, if you put a horse in front of me now, I would still try and get on!

 

Crash Landing

It would seem that ever since the first of January all I seem to do is either fall over due to a leg spasm, or collapse due to a seizure. Yesterday at my support/research group, I had a Non Epileptic Seizure, triggered by pain from my jaw, whilst sitting in my wheelchair. Now I had always thought that if I had a Seizure whilst in my wheelchair I would be fairly safe, as I was in a ‘contained’ environment. Turns out I was wrong. I regained consciousness to find myself on the floor. My seizure had shaken me out of my wheelchair onto the floor. Luckily the people around me acted as quickly as they could to make sure I didn’t do myself any harm, whilst the others fetched my mother to find out what to do. Thankfully  other than really bruising my coccyx, and generally being a bit achy, I was fine.

My Basal Ganglia, however, seems determined to inflicted pain on me. I have lost count of how many times I have fallen over because of my leg Dystonia today. My foot flips over and my leg spasms backwards, or sometimes up in the air, and I end up on the ground. This means that who ever is helping me walk also ends up on the ground too. I think my leg has been so bad today in reaction to lasts night collapse. Due to yesterdays collapse and today’s many falls, my body is really rather sore. I feel like I am covered in bruises from head to toe. Tomorrow I plan on resting my body, to give it time to calm down, and to meditate.

Today, when I wasn’t falling over, I wrote a list of a questions for my meeting with my consultant on Tuesday. I want to go as prepared as I can be, so that the situation I have been in with him for the last two months, does not ever happen again.

Today’s Support/Research Group and Dystonia Update

This evening I went to a group that my GP signed me up for. It is designed for people with chronic pain symptoms, to help give them coping mechanisms that they can learn to use in daily life. The group is also for research so we were asked to answer questions, and give them our life and medical history, so that they can compare the results the group gets at the end of the 12 sessions to the answers provided at the beginning.

At the start, I must admit I was a bit dubious about the group, the leader seemed a bit mad, and everyone there was a fair bit older than me. I was also concerned with how much I would be able to take part in, as I am in wheelchair. However by the end of tonight’s session my concerns were long gone. I had managed to take part in everything, when they did walking activities, I copied their upper body movements, and swayed about in the chair. The other people their were lovely and I have a good giggle with them all. We also focused on our posture and did breathing exercises which I found to be very relaxing. The two hours flew by, and I cannot wait for the next session!

Today has been a rather positive day. After six hours of calling, I finally managed to get hold of my Consultants Secretary, who has promised to chase him, and have him contact me ASAP, I am hopeful that he will, but I shall just have to wait and see. I have had no Non Epileptic Seizures at all today which is fantastic and my head and body are feeling much better.

My local Riding for the Disabled stable phoned me today, and as long as my Non Epileptic Seizures stay calm, then I shall hopefully have my first RDA lesson next week! I am rather excited!

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