It’s amazing how things change. If a teacher asked me to write even just todays date I would have turned into “Kevin & Perry”! Nowadays I get up in the morning looking for things to write about.
Scrolling through Facebook as I often do, I see a disturbing story about a woman who works in a well known high St Bookmakers. She has suffered terrible working conditions and poor pay.
People who know me know that I was a multi-site manager for a high St Bookmaker also and this brought flash backs of horrible times when I used to work there.
The most horrible event that I still remember to this day is being held up in a little shop in Glasgow at knife point by a machete. You can’t forget quickly having a machete to your throat, and for what a couple of hundred pounds?????
Another time was when I was followed to my car and a man tried to mug me for my banking on the way to the post office. I seem to meet all the charmers!! I told him I wasn’t giving him the money, instead, I would get in the car and if he didn’t move I would run him over!! I think he thought I was nuts as he actually walked away.
When I came back there were ambulances, police cars and riot vans outside the shop. I asked what was going on and I was told the man had stabbed the cashier over a can of juice!
I was certainly lucky that day!!
This is just a couple of stories that stood out, however I have hundreds over a ten-year period. It’s a terrible place to work where you face daily abuse for low pay conditions and extremely poor working conditions. What employer leaves you to work on your own in a betting shop of all shops for hours on end and you can’t get to the toilet or get anything to eat.
Even after all these years and even though I can’t work I still feel so passionate. I still see stories in the media and things seem to be getting worse and nothings changing. I feel so glad I’m out of the situation but it’s awful for the staff that are still stuck. These companies have a responsibility to look after their staff, not treat them like animals!!!
It’s a bad day when WordPress sends out a search party for you! I thought I better get my finger out and start writing!
With the end of the year coming close. It only seems fitting to write a bit about how the year’s went. It’s definitely been up and down with surprises in between.
In the beginning of the year it started on a real low. I was housebound, lonely and isolated after being made disabled due to 15 brain operations. I spent most days sitting in my chair looking out the window, watching everyone going about their business, taking kids to school, going to work etc. While I sat wishing I could do that and wish I had a purpose.
As I tell many people I try to help on my Facebook page, no situation stays the same forever and I found out about an organisation called the Glasgow Disability Alliance (GDA). They honestly changed my life! I went from feeling isolated, lonely, no friends, and no sense of purpose. Now the GDA have put me on confidence building courses, invited me to big events, I also campaign for disabled people’s rights. They have given me the confidence and the tools to do other things in my life too. I have also made many new friends.
Due to my new found confidence I decided to apply to the Open University to study BA Honours in Sociology. It’s been a lifelong dream and I’m loving it and enjoying the sense of purpose it has given me.
Lastly I became an Author and written a book to help kids with Hip Dysplasia facing surgery. I’m so proud of this achievement and so happy at the amount of kids that the books helped so far.
I’m hoping this shows as one door closes, another door opens and no situation stays the same!
I have spoken to many people who have underwent Chiari surgery etc and they feel their life has ended. However, with some positive thinking your life has actually just begun!!
I hope my sharing has helped and I wish you all the luck for 2018 and sending lots of positivity!!
Love Karen x x x
I started blogging initially to raise awareness amount my brain condition and help others with Chiari Malformation. I wanted to give hope and support to others that I didn’t have when I was going through my journey of over 15 brain operations! Understandably I ended up in a deep depression for many years due to being housebound, lonely and struggling to come to terms with my new disability. I tried for a long time to find help, company or some sort of club but there was nothing unless you were over 65.
Then I stumbled across The Glasgow Disability Alliance. I can safely say they have changed my life forever! They offer support, company, courses and much more for disabled people around Glasgow. They are also major activists for disabled people’s rights with their Drivers for Change group which Isla runs which I love being part of.
I have attended many courses to help my self-confidence, positivity, motivation and goal setting. Due to attending these courses I am now able to go out on my own, I have stopped my antidepressants, I have written a book and I have started an Honours degree in Social Science. 6 months ago, I never thought I would have been doing any of these things and I owe it all to the GDA. They have given me my confidence back and gave me the tools to start my life again.
More importantly they have helped me come to terms with my disability. It’s not a barrier anymore and I will GDA to be a voice for other disabled people who are struggling!
It’s just a thought!
It occurred to me I’ve not written a blog in ages so I thought I better put pen to paper (so to speak)! Then the problem of what to write about??? Luckily for a change I’ve had an interesting time of it!! So where to start????
I visited the GP a few weeks ago to ask her about stopping my antidepressants and we agreed over a few week period to drop the dose until an eventual stop. I now have been off them for about a fortnight and feeling ok. I’m really proud of myself!!
In around a week my open uni degree starts which I’m really excited about. I really needed this for a few reasons, to give me a sense of purpose, to give me something to fill my time and to keep my brain functioning!! I think this will be really good for my life in many ways and the subject is something I will enjoy learning about so it’s a bonus!!! I also want my daughter to be able to be proud of me and be able to talk about me with pride if someone asks about her mum. Now she can say “my mum is doing an honours degree in sociology and has written a book”. Before I sat in a chair ill and sore all day!!!
I’m now writing book number 2!!! I’ve had many people come forward and say why have you not written a book about Chiari with all your experience?? So what am I doing now??? I think I’m mad!! I’ve currently written a few chapters so it’s started and that’s the hard part getting it started. I’m actually excited to see how it will look and hope it helps to spread awareness about the condition.
Finally I was at a course this week called “steps”. It’s a course to help self confidence, self talk, motivation, goal setting and much more. I found it eye opening and really useful. I wish every person suffering from depression could go on this course because I think they could really benefit from it.
They teach you about who you should listen too, who’s truth is actually the “truth” , and that a thought is just a thought!! I think the last is so important when you’re suffering from depression!! Bad thoughts come into my head all the time and bring me down and now I tell myself it’s not real, it’s just a thought! It works! The course was invaluable!! I feel much more confident and happy in myself!
I hope everyone is doing ok and remember I’m here if you ever need an ear 💜
Remember when you’re feeling low it is just a thought!!
Join me on chiari support 💜💜💜
Love karen x x x
There's never been a truer quote said "you've always had the power my dear, you just had to learn it for yourself" (Glenda, the good witch). That's exactly what I did!! I believe we all have the power inside of us, you just have to find it!!
The last few months has been crazy and I never thought I'd be doing the things I'm doing. There's a nice thing my Gran always said to me and I think it's something everyone should do "aim for the moon because if you miss you'll land among the stars"
So I'm an author!! I can't believe it! I struggled to write a shopping list! This book meant so much to me and I was so passionate about it, it felt easier to write. At times I didn't know how I got it completed as I was going through a really low,rough time personally. I think the thought of letting the kids down kept me going. I'm so glad I managed to get it done as already kids are benefiting from it and all feedback has been great.
I'm so proud that around 50 books have been sold, we have around 200 likes on our Facebook page and we are on Kindle and Amazon!!! This is just since June!!
I feel like if you are positive and put your mind to something you can do anything. I'm the perfect example of this!
Whatever you want to do, go do it now!!!
Come and join us on Facebook
Spica Warrior by Karen Kerr and Chiari Support
Love Karen x x x
There she goes spinning like a Catherine wheel! I have to hold onto my tea just so I don't wear it!! Who would have thought this time 5 years ago Lauren would have been going in for her first surgery of five and spend the next 18 months in a cast! It was a really tough time for the whole family as we had never heard of DDH and there was no local support.
Over the next next 18 months Lauren had a closed reduction, open reduction 2 femoral osteotomies and 2 pelvic osteotomies and countless cast changes. The worst worst part was handing my baby over to the anaesthetic nurse and not knowing if I was going to get my Daughter back!
It was also difficult as part if the way through Lauren's treatment I had to start my brain surgeries for a brain condition I was born with.
Everything seemed to happen at once and we definitely felt we were getting tried!!
However Lauren was amazing and she really helped me through it all. She was an inspiration! Not once did she complain and she smiled and laughed everyday. She also walked, ran, jumped and climbed in her cast. I once caught her on a trampoline!!!
Five years on Lauren has perfect hips and does gymnastics, ballet, hip hop and dance! It's so important to stay positive your wee one because you might not see the light right away but it's there!
That's why I decided to write the book "spica Warrior", a book about kids with Hip Dysplasia facing surgery. I know some parents struggle with finding the positives or telling the cool about surgery. This book is a "tool" that helps parents find the right words to talk to their children about the difficult subject. It also makes the journey seem less daunting and less scary for kids too. I wanted to use our experience to make other people's experiences easier and less daunting!
So far the book has proved positive and people like it which is great! I'm so glad that it's starting to help families as that's exactly what I wanted to achieve. I want to continue to share and make more and more families aware of the book to help as many people as possible.
You can purchase Spica Warrior on https://www.etsy.com/uk/listing/524511446/spica-warrior?ref=listings_manager_grid
Lots of love
Karen x x x
I've not written a blog in a while but due to running a Facebook page and being an admin for another I speak to many people and there was a theme that was forming when speaking to members. I've found that many members are trying to find problems in situations before they've happened or generally just focusing on the negatives of their situations.
I felt that passionately about this I had to put my thoughts down in a blog! People closer to me know that I have been suffering with severe depression so I have been practising different ways to feel better. However common sense would tell you, what good is going come from imaging problems that might never happen? You're just going to make yourself ill and everyone round about you miserable.
Using my condition as an example, chiari malformation I have had conversations were people say that their life will never be the same and they are miserable.
I have had 15 plus brain operations, been in a coma for 8 days and been left disabled and I would say my life is better than it was before. Sometimes I think people want to be miserable. There is positives in every situation, it's just a matter of finding them and making the most of your new situation.
I think if you think positive good things will happen and you can make things happen! I am the perfect example of that!
If I can help anyone get to where they want to be, please just send me a message email@example.com
Let's find the "new you"
Find us at Chiari Support
Lots of love
Karen x x x
I couldn’t believe my eyes when I opened the box! This shiny white book with my name on it looking back at me. It didn’t seem quite real ???
I have written Spica Warrior due to my Daughter having bilateral hip dysplasia as a child and undergoing 5 huge operations and 18 months in a cast. I wanted to use my experience to help other families and make sure no more kiddies were scared when they heard the word “surgery” again!
I’m so so pleased with how the book turned out. I was so worried that I couldn’t get what was in my head to paper but it all went to plan. Lauren’s surgeon even wrote the foreword.
We started a Facebook for the book ” Spica Warrior by Karen Kerr” and started selling the book on Etsy. I can’t believe how popular the book has been and the reviews have been lovely. It’s great to know that the book is useful and people are loving it!!
I’m so proud of what I’ve achieved and I’m so glad I’m helping all these families and these wee kiddies. The more families we can reach the better so keep spreading the word!!!
Lots of love karen x x x
Over the last nearly 4 years my life has went through so much change, some good, some bad! Chiari has definitely changed my life forever. At first I thought my life had ended but I feel if you embrace change and have a positive mindset thinks can happen for the better. I believe everything happens for a reason! I also believe you’re not given anything you can’t handle!!
I went from working 40 plus hours a week, in charge of loads of staff, completing paperwork and dealing with unhappy customers. Plus running a house and looking after a 3year old.
I then went to being stuck at home alone all day every day, looking out the window. My mobility really poor that I’m falling all the time and in a lot of pain. All I have to do is watch garbage on the TVs and my mind seizes up!!
I thought no I’m changing my mindset, think positive! Change your life! Try and get out of this dark hole!
I looked online and joined the Glasgow Disability Alliance who get people out and enrol people in programs to help them with their self confidence. I’ve met so met people and made friends. I’ve been put on the “future visions program” which is ten weeks of coaching and self help and things for me!
I’m doing distance learning course with Reid Kerr College. I’ve completed 3 already and currently doing introduction to counselling as I want to volunteer in the future and help others like myself.
I’m currently trying to arrange funding to do an Open University degree starting in September.
These are some of the examples of what you can do when you put your mind to it and decide that Chiari is just another condition and you’re not going to let it win. Sometimes people think “oh there’s no point” but there is!! We are only young and we have our lives ahead of us and we need to do something about it. It’s just a matter of finding what interests you and what’s in your area.
If anyone needs any help please drop me a message. Don’t fight alone!!
Love karen x x x
We are nearly at 350 members!! I never thought I’d be helping so many people! When I was going through my chiari journey I had no one and that’s the reason I started this page. I didn’t want anyone to feel alone and scared like I did! I really hope that I continue to help as many people as I possibly can.
Ill just tell remind you of how i got to where I am. I’ve been having headaches since the age of seven but wasn’t diagnosed with chiari malformation until I was seventeen. I continued to suffer with the pain until I had my Daughter Lauren. After my pregnancy I had an MRI, they said my chiari malformation had worsened and I’d developed Syringomyelia. They reckoned they weight of the baby during pregnancy caused this. They said I would require surgery immediately. However I was due to get married in two months time!!!
I got married in August 2013 and had my first decompression surgery in September 2013. The surgery wasn’t successful, I took a reaction to the dura patch they used and developed meningitis and the cerebral tonsils that they shrunk fell back down.
I had weeks of antibiotics. All my veins collapsed and they ended up having to put them in my feet!!
Once the meningitis had gone they tried decompression number two where they amputated my cerebral tonsils. This time they didn’t use a dura patch!
The surgery seemed to have worked and I got home.
When I got home I didn’t seem right. I was home alone. It was New Year’s Eve and I made myself lunch. I walked from the kitchen with my plate and glass and the next thing I collapsed. I woke up in a puddle of blood. The glass and plate had broken and I’d glassed myself in the face. I managed to get myself onto the couch. I think I must have a guardian angel as no one was due over but at that moment my aunt walks through the door!! She starts screaming when she sees all the blood and phones and ambulance. I’m blue lighted back to the hospital and on New Year’s Day I have decompression number three.
After that I’m still not feeling well so they do a Ct scan and they see I have hydrocephalus so now I have to go for further surgery and get a VP shunt.
Due to being bed bound for so long they send me to the physical disability rehabilitation unit to learn to walk again and build up my strength. I eventually get out of hospital on April 2014!!!
The first 8 months of my marriage I was in hospital!!!!
I then had to return for a week a few months later to have a syringal pleural shunt fitted due to my Syringomyelia. When they fitted the shunt I lost the feeling in my left leg from my knee downwards.
I’m hoping my journey helps me help you 💜💜💜
Please don’t be alone because you don’t have to anymore x x
Lots of love karen x x x