Tag: hospital

Posted in Archive, January

Hospital visit and a girlie shopping day!

Posted on by dystoniaandme

Today started out on a bit of a low but ended on a high. This morning my step dad and I, set out rather early to battle the snow, to get me to a hospital appointment in Chelmsford, Essex. The drive normally takes an hour from Tring (Hertfordshire) but due to snowy conditions took a lot longer than expected and at times we were doubtful we would make it there on time. Thankfully we arrived at the hospital 20 minutes early so had time for a quick coffee before going into see my consultant.

I was getting the results back from some procedures I had recently had (2 different types of Endoscopy’s) , in relation to difficulties I have had for some time with vomiting  regurgitation and acid reflux. It turns out I have a condition called Rumination syndrome. For many years this condition  was thought to be a psychogenic condition that only affect infants and mentally disabled people. However, more recently it has been discovered that it can affect healthy infants, adolescents and adults as well, and in the majority of cases is not psychogenic… yet they still have not found out what causes this. It is poorly understood and is often unheard of by the medical profession, patients and public. Unfortunately there are no pills or surgery to cure the condition  My consultant also believes that I have Dystonia affecting my Oesophagus and thinks that this aggravates the Rumination Syndrome. However, the Rumination Syndrome, does not really bother me at the moment, so I am not to fussed about it. I know that by the time I wake up tomorrow I will most likely have forgotten all about it. That may sound silly but I do not see the point in concentrating on the negatives in life.

On a more positive note however, whilst I was in Chelmsford today, I went and met up with one of my close uni friends, and had a fabulous girlie day out shopping! I tried to push myself around the shops, however my arm was not at its best and after sending a number of objects flying in New Look, we deemed it sensible for Emma to spend the rest of the day pushing me around. The poor girl.

I had such a fantastic time. Not only did I get to have a good catch up with her but I also felt like a normal everyday young adult! I did not have my parents with me, which gave me more independence, and I felt like I was on top of the world. The day went perfectly minus one or two spasms. It gave me so much confidence.

I was rather sad to leave Chelmsford, as when I was at uni there, I completely loved the city, and could not imagine ever moving away from it. The last time I was there was the day I moved out of the uni accommodation in July last year, after Dystonia put a stop to my Midwifery training.

However I refuse to focus on the negative. I am concentrating on how much of an amazing day it was and it was so good to see my friend. I am completely exhausted from it, so I am going to bed early tonight. I have a great week planned, a friend is coming to see me on Wednesday, I am going riding on Thursday, another uni friend is coming to see me on Friday, my boyfriend is coming round on Saturday and my grandparents are coming over on Sunday! It is going to be a good week.

Posted in Archive, January

Emergency Hospital Trip

Posted on by dystoniaandme

Yesterday  was an extremely odd day. To be honest I remember  nothing of it! Apparently as I was mixing up my medicine in the kitchen, I collapsed and fell on to our tiled floor and then went on to have a hell of a lot of Non Epileptic Seizures along with extreme Jaw spasms, with mere seconds of consciousness between each one. Due to the fact I really hit my head and arm hard when I collapsed, I was rushed off to hospital in an ambulance. Whilst at the hospital I was monitored for hours and had my hip x-rayed (thank-fully I had not broken it). It was while we were at the hospital that my mother noticed that I was also having Non Epileptic seizures which weren’t taking on their usual form. I was staring blankly, and not responding when my mum spoke to me or when she waved her hands in front of my face. This is slightly concerning as it means that I may be having more Non Epileptic Seizure than we are aware of.

Today I have woken up feeling like I have been run over repeatedly by a truck. I am therefore spending the day medicated to the max, and in bed. The thought of moving is not one I welcome. This incident has given me yet another issue to talk to my consultant about as it is getting beyond ridiculous now.On the bright side of things, whilst my Jaw Dystonia is still playing up, it is not to bad today, which is a relief.

Posted in October

Musings on my upcoming treatment

Posted on by dystoniaandme

Back in 2009 I was admitted into my local hospital with Complex Regional Pain Syndrome in my right leg. I stayed in hospital for a total of six months and still suffered with the condition for a few months after that. The condition meant that despite the fact that I could see my leg so I knew it was there, I didn’t feel like I was connected to it. It would change temperature, colour and sensations. I could not bear even the touch of clothes, and was not able to move it. As a result I had intensive physiotherapy and Hydrotherapy, which thankfully worked a treat for me. I had to learn to move my toes/leg/walk again and retrain my brain to understand that the floor or clothes etc. were not actually harming me.

Due to what I went through with the Complex Regional Pain Syndrome, I can understand how/why my Neurologist has recommend an intensive physiotherapy and rehabilitation treatment plan. I completely get how it will hopefully (fingers crossed) help with my symptoms in my arm and leg. What I am curious about is how it will help with my facial spasms and eye spasms!

When I had intensive therapy before, I basically had to bombard my nerves constantly. I was given exercises to do every hour (in the day) if the physiotherapists were not with me. This meant standing and putting my foot on the floor or running brushes up and down my leg etc. They were all extremely painful but it was by forcing myself to do this constantly that my nerves resumed normal activities. I am expecting that my upcoming treatment will be similar, I am presuming that I shall be made to do movements/activities that will bring on a spasm repeatedly in an attempt to retrain my brain. To me this makes sense, however with my facial spasms they tend to be pretty random, though sometimes I feel this has something to do with eating. Again my eye spasms are random and vary between the length of time they last, with the shortest being seconds long and the longest being 15 hours.

I know that I cannot get any answers to my musings until I am there and taking part in the treatment programme, but I am so curious! The whole disorder intrigues me so much. The human body is such an incredible thing, and although we know so much about it, when it comes to the brain we know very little. New things are discovered all the time, and each new discovery allows for more research to be done. We learn more and more each day. I may not even get the answers during my treatment. One small thing could trigger another. I can’t wait to see what my treatment plans does for my dystonia! Its a big unknown but hopefully one with a positive outcome.

Posted in September

Dystonia and Public Transport

Posted on by dystoniaandme

Today I realised I had two rather important hospital appointments this coming week. Whilst neither of these appointments are dystonia related, the dystonia makes it damn near impossible to get to the appointments. To get to these hospitals, the appointment letters recommend that you use public transport as parking at the hospital and in the surrounding areas is extremely limited. At first this seemed just to be a mere annoyance, however this soon became a major issue.

Our town train station is not accessible by wheelchair, and the nearest one that is you must book 24 hours in advance to let them know that you will need a ramp, but yet it is even more of a struggle to get help getting off at the other end. Then factor in that the majority of the underground stations (including all the ones I needed to use) are not wheelchair friendly!

I have only been bound to a wheelchair since September 29th. Yes, I can hobble on my tip-toes, but this is only for a few steps  before the dystonia alien rears its ugly head, it is no-where near far enough to enable me to get on and off a train. We had been trying to avoid getting a blue badge, not for any particular reason, but we seemed to be managing to get the wheelchair and me in and out of the car OK  so there was no need for it.

I think it is disgusting that the public transport service has not been made wheelchair/disabled friendly!  What if I had no-one to drive me and I had no choice but to use public transport? Am I expected to pay money I do not have for an over priced taxi to London, which would easily cost me hundreds of pounds? I think this shall be yet another issue that needs to be added to my ever growing list of complaints!

Posted in September

I can smile!

Posted on by dystoniaandme

For the first time since July 22nd I can smile! It takes a bit of effort due to all the botoux but I don’t care!!!

The operation so far is looking like a success! No pain, I can open my mouth, I can chew, my lips are still a tiny bit wonky but I don’t care, it can take a few days to see the full results of the botoux. Having no pain in my face, is the most amazing feeling! Now when my face decides to spasm, its is only my eyes, mouth and nose that spasm, my cheeks stay blissfully still!

I feel so lucky to have been treated by a surgeon who actually understands what Dystonia is, who listens to what you have to say and cares and likes to put some extra amount of botoux in as he finds it has better results! 

So little dystonia alien, I feel like that’s another point to me… I’m catching up. 

 

🙂