WELCOME TO A VERY LATE DAY 10 BLOGMAS:
This is going to be a little short Blog today as I just want to say a huge thank you to Angie at the Dystonia Society.
I rang her on Tuesday a little annoyed about what is happening with my care down at Salford and expressed my concerns to her via a answer phone message.
Yesterday at about midday she rang me back and I told her how I have been getting worse and I am struggling to do very simple tasks and walking around the house, I also told her about the pains in my head near the DBS wires which can cause me to be in pain for hours and this is happening a lot at the moment, It's so frustrating to get threw to anyone so after 2 weeks of trying I rang Angie and reported my problems and my worries.
She is very good and a great professional and I must thank her as she told me she would ring Boston Scientific herself and try and get hold and try and tell them my concerns. Angie rang me back within 30 minutes and said she has sorted Cheryl to join the meeting on the 21st December down at Salford Royal Hospital. I now have someone I can express my concerns to other than the useless Monty as he is very disrespectful towards me and does not care about my needs and pain one bit. He still does not have a clue how the Boston System works and I get very upset when I travel down there and nothing ever seems to get solved.
Thank you to Angie for her massive help and thank you for always being on the other end of the phone if I need help getting threw to the doctors.
THANK YOU FOR EVERYONE WHO READS MY BLOG
Friday 11 December 2015
Thursday 10 December 2015
DYSTONIA: BLOGMAS #9 SALFORD HOSPITAL AT IT AGAIN
SALFORD HOSPITAL AT IT AGAIN!!!
Sorry day 9 is a little late we are still struggling for broadband and the power has been very on and off, I think it's getting back to normal now till I turned on the news and Cumbria has been hit again by the river banks bursting for the second time in a week. It's awful for people in Cumbria I know quite a few people who live in Appleby and Carlisle, I hope the government steps in and helps everyone out and gets everyone back on their feet as soon as possible.
Today's blog is about Salford hospital again!
Another rude secretary answered the phone yesterday when I rang Salford, I hate ringing his secretary as she is the laziest and most rudest I have ever spoken too. She just wants to get you off the phone as quick as possible. I have an appointment on the 21st of December at 4pm which I am dreading as he's not a very helpful man, these problems have been ongoing now for over 13 months and are far from resolved.
They have now said they are organising a meeting with all the people involved in January but I am not invited to the meeting which is very frustrating. I am glad and worried at the same time as loads of different things are going around in my head, the meeting must be bad news as they would never organise a meeting over nothing.
I will keep you all updated on the joke on the NHS and fingers crossed we will get an outcome soon!
THANK YOU VERY MUCH FOR EVERYONE WHO READS MY BLOGS
FOLLOW ME ON TWITTER@MYROYLELIFE
Sorry day 9 is a little late we are still struggling for broadband and the power has been very on and off, I think it's getting back to normal now till I turned on the news and Cumbria has been hit again by the river banks bursting for the second time in a week. It's awful for people in Cumbria I know quite a few people who live in Appleby and Carlisle, I hope the government steps in and helps everyone out and gets everyone back on their feet as soon as possible.
Today's blog is about Salford hospital again!
Another rude secretary answered the phone yesterday when I rang Salford, I hate ringing his secretary as she is the laziest and most rudest I have ever spoken too. She just wants to get you off the phone as quick as possible. I have an appointment on the 21st of December at 4pm which I am dreading as he's not a very helpful man, these problems have been ongoing now for over 13 months and are far from resolved.
They have now said they are organising a meeting with all the people involved in January but I am not invited to the meeting which is very frustrating. I am glad and worried at the same time as loads of different things are going around in my head, the meeting must be bad news as they would never organise a meeting over nothing.
I will keep you all updated on the joke on the NHS and fingers crossed we will get an outcome soon!
THANK YOU VERY MUCH FOR EVERYONE WHO READS MY BLOGS
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Tuesday 8 December 2015
DYSTONIA: BLOGMAS #8 SCOTLAND IS COMING
The power once again has been limited today in and around Lancaster which has made things difficult again to communicate and get online, the rain has eased off for the past 48 hours which is a blessing for the roads and the bridges have re-opened so traffic is back to normal now.
After the last few days I can not wait to get away in January back to Scotland we have booked this time for 3 weeks, we have only ever been for a week at a time so it’s going to be strange not thinking about packing back up on the Friday night ready to check out on Saturday as we are stopping at one of our favourite places for 2 weeks then heading to another house we have rented up near Wick, I hope the snow keeps away as I hate driving in snow and I have never drove in snow in Scotland before.
We are also going back up 2 weeks after we get back for another 2 weeks in February which once again we can’t wait for. It is really a matter of when and not if about moving up there now and fingers crossed our dream will come true this time next year. Both me and Hollie love it up there and every time we go up it is getting to feel more like our home to spend the rest of our lives together up there.
The biggest problem we have and it’s a nice problem is we don’t know which part of Scotland to move to, we want to be not around houses and have neighbours. I would also love a bit of land to walk around in with no body around to judge how you’re walking and no one will know if you’re having a bad day or a good day which I just can’t wait for!
Monday 7 December 2015
DYSTONIA: BLOGMAS #7 MORE POWER FAILURES
Sorry these blogs today have been very short, we have had no power once again tonight till late as the generators stopped working before for around 5 hours which once again put everywhere in complete darkness.
It's back as I type this at 11pm and fingers crossed it will stay on now till they get the sub station back up and running.
The devastation around Lancaster is unbelievable, I am still in shock after driving threw the city centre this morning and to see where the water has actually has come up to is amazing it has just wiped right threw the middle of town.
The good news is the bridges have both opened now so at least the traffic will be a little easier as you can get in and out of Lancaster easier than before. The worry is towards the end of the week the rain is set to come in again and there is weather warnings in place.
My Dystonia is not the best at the moment as I have not slept much since Friday night as we have been up most of the time. Dystonia is very hard to cope with when you have little sleep you become very edgy and aggravated at the slightest thing and it's not nice for Hollie sometimes as I get into little moods but I don't mean to. I am planning on going to sleep the minute this is posted and getting a better nights sleep (fingers crossed)
I will be back up writing better and longer Blogs hopefully tomorrow.
Take care and lets hope all the flood victims get sorted ASAP!
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It's back as I type this at 11pm and fingers crossed it will stay on now till they get the sub station back up and running.
The devastation around Lancaster is unbelievable, I am still in shock after driving threw the city centre this morning and to see where the water has actually has come up to is amazing it has just wiped right threw the middle of town.
The good news is the bridges have both opened now so at least the traffic will be a little easier as you can get in and out of Lancaster easier than before. The worry is towards the end of the week the rain is set to come in again and there is weather warnings in place.
My Dystonia is not the best at the moment as I have not slept much since Friday night as we have been up most of the time. Dystonia is very hard to cope with when you have little sleep you become very edgy and aggravated at the slightest thing and it's not nice for Hollie sometimes as I get into little moods but I don't mean to. I am planning on going to sleep the minute this is posted and getting a better nights sleep (fingers crossed)
I will be back up writing better and longer Blogs hopefully tomorrow.
Take care and lets hope all the flood victims get sorted ASAP!
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DYSTONIA: BLOGMAS #6 LANCASTER NO POWER AND FLOODED
Sorry I couldn't post a blog yesterday, I live in Lancaster in the UK, Some of you will have heard and seen reports on the TV and radio about our area being flooded.
Saturday day time it did not stop raining for a single second, it wasn't just the rain what was causing problems it was the wind as well they said on the radio we was having up to 80MPH winds and outside was very very wet!
It was very bad outside but we was safe and warm inside the house till around 11pm on Saturday night when all of a sudden all the electric went off and that was it till this morning, the bridges to Lancaster were both closed as a container had floated from somewhere and smashed into the bridges and caused damage so the traffic was just mayhem!
About midnight that same night we discovered a leak in the ceiling in the hall way, it was leaking in as the rain was battering the front of the house that was it was coming threw the ceiling, we rushed to try and mop it up and cause to further damage but on Sunday morning we had to take the ceiling down and the damage had been done!
Being without power for so long was also worrying for my Boston charger which charges my Deep Brain Stimulator up, as I type this it is still charging up and I hope that it has not been damaged as it has not been on charge for a full 36 hours.
Luckily they have brought generators in from around the country to get the power back on as on Sunday morning they had said it might not have been on till Wednesday which would have been even more of a nightmare.
This weekend will always be remembered as one of the worst ever around these parts of the country and my thoughts go out to all the people who have lost their possessions on their homes as part of the floods.
I will be uploading another Blog later today as this one I am counting as yesterdays
Saturday 5 December 2015
DYSTONIA: BLOGMAS #5 SLEEP IS HARD
Welcome to Blogmas day 5 I hope you enjoying reading theses daily Blogs:
DAY 5 SLEEP:
I am finding my sleeping patten a bit strange at the moment, I am not going to sleep till around 1am and getting up around 7am so I am getting around 6 hours sleep a night, I know this isn't enough but I just can't get comfy or I get things running threw my mind and start thinking about things.
Other night I fell asleep at 8pm and had a couple of hours woke up for an hour then went back to sleep all in all I had about 11/12 hours sleep and I still felt the same the next day. The way my body is in spasm all the time at the moment it's so hard to get calm and comfy and when you wake up the next morning it feels like you have had a full work out.
When I wake up my body feel's so tired I can hardly move my legs some mornings I am like an old machine which needs a few minutes to get started in the morning, I get frustrated how I am at the moment as I dread waking up and having to deal with the tired legs and all the ache's and pains. Once you get going you get a bit more relaxed but then suddenly something happens and you get a big twinge or a spasm and you're back to square one and you're in pain and aching again.
I am not able to do much at the moment which is frustrating and I am trying to keep busy around the house as I am not going out much as I get so tired when I do most things, There is a red weather warning around the north west where we live today and the weather is awful today the wind and rain is terrible so today is just a day to film a few Fifa video's and chill out as I don't think it's stopped raining in a week or so.
I am enjoying have a little write everyday during Blogmas and I have many more little blogs to come
DAY 5 SLEEP:
I am finding my sleeping patten a bit strange at the moment, I am not going to sleep till around 1am and getting up around 7am so I am getting around 6 hours sleep a night, I know this isn't enough but I just can't get comfy or I get things running threw my mind and start thinking about things.
Other night I fell asleep at 8pm and had a couple of hours woke up for an hour then went back to sleep all in all I had about 11/12 hours sleep and I still felt the same the next day. The way my body is in spasm all the time at the moment it's so hard to get calm and comfy and when you wake up the next morning it feels like you have had a full work out.
When I wake up my body feel's so tired I can hardly move my legs some mornings I am like an old machine which needs a few minutes to get started in the morning, I get frustrated how I am at the moment as I dread waking up and having to deal with the tired legs and all the ache's and pains. Once you get going you get a bit more relaxed but then suddenly something happens and you get a big twinge or a spasm and you're back to square one and you're in pain and aching again.
I am not able to do much at the moment which is frustrating and I am trying to keep busy around the house as I am not going out much as I get so tired when I do most things, There is a red weather warning around the north west where we live today and the weather is awful today the wind and rain is terrible so today is just a day to film a few Fifa video's and chill out as I don't think it's stopped raining in a week or so.
I am enjoying have a little write everyday during Blogmas and I have many more little blogs to come
Friday 4 December 2015
DYSTONIA: BLOGMAS #4 FOLLOWING IN MY DAD'S FOOTSTEPS
Welcome to day 4 of Blogmas I hope you're enjoying reading my post's.
My dad has always worked very hard and I have always respected the work he has done, I have always asked him about the jobs he's on and what he is doing the next day, He has always worked in Civil Engineering and when I was growing up every chance I could get I was in the van with him and off to work with him.
I used to love seeing all the machines and seeing him at work, he's never missed a day of work and I've always respected him for that, I have always wanted to work with him and beat his achievements but I know I will never be able to work in that line of work as my condition, it makes me a little sad but i'll always have the memories of going to work as a child with my dad and seeing everything, even now I look at his emails about the drawings of jobs and his projects of jobs.
My dad took me everywhere as a child even when I was in a wheelchair he used to always put it in the back of the van and take me everywhere he went, I never really had the chance to go out anywhere but when my dad offered the chance to go to his work or just out to fill the van up I used to jump at the chance.
I have learnt a lot from my dad about the railway and Building works not that I will ever be able to do any of the work he has done but I have the memories of great days out as a child which I thoroughly enjoyed.
Brilliant memories and brilliant times as a child.
HAVE A GREAT DAY FOR WHO EVER READS THIS.
FOLLOW ME ON TWITTER@MYROYLELIFE
My dad has always worked very hard and I have always respected the work he has done, I have always asked him about the jobs he's on and what he is doing the next day, He has always worked in Civil Engineering and when I was growing up every chance I could get I was in the van with him and off to work with him.
I used to love seeing all the machines and seeing him at work, he's never missed a day of work and I've always respected him for that, I have always wanted to work with him and beat his achievements but I know I will never be able to work in that line of work as my condition, it makes me a little sad but i'll always have the memories of going to work as a child with my dad and seeing everything, even now I look at his emails about the drawings of jobs and his projects of jobs.
My dad took me everywhere as a child even when I was in a wheelchair he used to always put it in the back of the van and take me everywhere he went, I never really had the chance to go out anywhere but when my dad offered the chance to go to his work or just out to fill the van up I used to jump at the chance.
I have learnt a lot from my dad about the railway and Building works not that I will ever be able to do any of the work he has done but I have the memories of great days out as a child which I thoroughly enjoyed.
Brilliant memories and brilliant times as a child.
HAVE A GREAT DAY FOR WHO EVER READS THIS.
FOLLOW ME ON TWITTER
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