I created Chiari Support UK on the 26th November 2016 and we have over 200 members already! The page is growing daily and I receive so much positive feedback of how much the page is helping others. This pleases me so much as this is the reason I started the page. I had to go through my chiari journey on my own and I didn’t want that for anyone else!
I have been suffering from severe depression and running the page has been helping me. It gives me a sense of purpose and a reason to get up in the morning. It feels great knowing my advice and support has helped someone else and made their life a little easier.
It’s also great to be able to chat and make friends with people that understand the condition and understand the situation you are in. I find other people just don’t get it! It’s so difficult to explain the kind of pain you’re in from when you open you’re eyes in the morning until you close your eyes at night. Only other people with the condition understand and want to listen.
Being left disabled and housebound I’m never going to work again so the Chiari Support UK page is like a lifeline for me too. It is like my full time job now and I love looking after all the members. If I didn’t have the page I don’t know what I would do with my day and I wouldn’t have anyone I could relate to. It’s so important to have people around you that understand you and don’t judge!
I hope the page continues to grow and I continue to help people through their chiari journey. Not only does it help the members but it helps me too.
Come and join us at Chiari Support UK
X X X
When I was told I had a chiari malformation I thought i was dealing with a medical condition that would require medication and most probably surgery. I didn’t realise I was dealing with a condition that would change my life! I didn’t see it coming!
Instead I’m dealing with a criminal! Chiari has snatched away so much from me over the last three years! I used to work full time as a manager running lots of shops. I was really good at it and thoroughly enjoyed doing it! I also used to be able to drive but due to all my conditions I had my licence taken away.
When I think back to my first operation the theft started from there. I got married on the 4th August 2013 and had my first decompression surgery on Friday 13th September 2013. I spent the first 8 months of my married life in hospital and we still have never been on a honeymoon. After we got married we were going to try for another baby but due to the way chiari has left me that will never be possible.
Chiari has stolen my independence and mobility. When I had surgery to place a shunt in my spine they damaged the sensation in my left leg and various other places around my body including my bladder. This means I have severe balance problems and can’t go out on my own. I also have to self catheterise due to them damaging my bladder. At 32 you never expect you would have to end up doing something like this!
The most heartbreaking is being a mum or not as the case maybe! Lauren will ask “can we go to soft play, can we go to the shops”. I’ll have to say we can’t honey daddy’s at work and Lauren with kids innocence will say “we can’t do anything if it’s just you”. I wanted to be a mum more than anything in this whole world. I was told I couldn’t have kids and had miscarriages so Lauren is my world and I would do anything for her. This makes this so much more difficult that I’m riddled with guilt, feeling like I’m half a mum. I can’t even take her to school in the morning!
Usually my blogs are positive but I feel I had to get this out, one to make me feel better and two to help others understand. Sometimes I think friends and family feel we are moaning, over reacting etc but they only need to listen to us for a few minutes, we need to live it. It maybe slightly blunt but I’m putting straight on paper what’s in my head.
I hope that helps explain things!
Chiari is constantly committing crimes and getting away with it!
Come join us at Chiari Support UK
Love karen x x x
You are told at pre op that you will be in hospital for 5-7 days after decompression surgery and about 6-8 weeks off work and everything should be great! I was in hospital for 8 months and seen many success stories where this happened. However sometimes myself included it doesn’t quite go to plan!
When this happened to me I really struggled to come to terms with the fact that my surgery didn’t go to plan and I would never get better. I felt like I was down a deep hole and I was struggling to climb out! Being 8 months in hospital I had a lot of time to think and I came to the conclusion that the best thing to do is stay positive and think positive!
I thought about about the positives in my life, I had just got married and have an amazing daughter who had just successfully beat hip dysplasia after being 18 months in a cast and having 6 huge operations!
I’ve had around 15+ brain operations and made disabled and housebound and really struggled to find the positives! However due to me going through these operations and being the way I am I can help so many other people. When I was I was going through my chiari journey I didn’t have anyone so I didn’t want other people to have to go through this alone!
I’ve also tried to see all the positives of having the condition. I have made some lifelong friendships that I would never have made! I created a Facebook page which I didn’t think I would have ever have had the confidence to do and now I’m even writing blogs!!
It’s important to remember there is no point wasting time worrying about what might go wrong or ifs and buts. No amount of worrying and overthinking is going to change the outcome. It will just make you ill!
Sometimes I think I’m becoming boring or sounding like a broken record but it’s about finding your “new normal” you might not want to or are scared to but you might find it’s actually better?! You don’t know until you try!
The main thing to remember, that I’m a prime example of is IT ALL WORKS OUT IN THE END!
Come and join us at Chiari Support uk
Love karen x x x
This blog was for my dear friend Jaquie x
Chiari is a debilitating illness that causes many symptoms that affect our daily lives but it’s so important that we don’t let it win!
If you were used to going out with friends once a week for lunch, then still do it! If you wake up that morning and you’re feeling a little sore and tired don’t let Chiari win. Take your wheelchair with you, take your medications and maybe not stay out as long as you normally would. Chiari-0 Me -1
Also just because you have been diagnosed with chiari it doesn’t mean your life has ended! Yes we have good days and bad days but I think it’s important to set yourself goals. Start off small and make sure they are achievable. No point setting yourself up to fail!
You might start with
– get dressed everyday
– Get out for a walk everyday
– Meet up with a friend every week
By doing this your taking back control of your own life and not letting chiari define you!
Lastly I would just say don’t let the illness get in your head so to speak!
When speaking to a lot of chiarians they put down every symptom they have to chiari and end up making themselves a paranoid nervous wreck. Now I know that’s easy for me to say as I have had 3 years to get used to the idea. However I just want to share my experiences to make your lives a little easier a lot quicker than it was for me as I had no one to help me.
In April 2015 I became very unwell and my husband Grant phoned my local neuro ward and they insisted to bring me straight up. I got out the car and collapsed in the hospital car park which is the last I remember. They got me to the ward and I stopped breathing so they had to get the crash team. I ended up in intensive care in a coma for 8 days (during Lauren’s fifth birthday party). It turned out that I had an infection that got into my blood stream causing septic shock causing my organs to shut down. This whole episode was nothing to do with chiari. Luckily the doctors figured this out and I’m still here.
You’re always going to have chiari, it’s just about finding a balance. When something’s wrong try and take a step back and think logically and most importantly not to panic! It’s not easy but try to put chiari to one side and live your life the best you can.
It’s now about finding your “new normal”
You will always find support at Chiari Support UK
Love Karen x x x
(This blog was especially for Andi x x x)
There’s always a silver lining!
I’ve always been of the opinion if you think positive great things will happen!
I believe if you’re a negative, moany person, no good will come from it ( just my opinion)!
Lately I’ve not been singing from my hymn sheet and been going through a really dark time. I’ve struggled very much to see the positives in anything!
Luckily with the help of amazing family and friends I’ve turned a corner and I can see that silver lining shining through again. It certainly has been a long dark time and it will be a slow recovery but I’m determined to go back to my positive mantra!!
I have been putting things in place to try to keep me on track.
I have just wrote a book!!! I am now working with my friend Kirsten to finalise illustrations and get it published!!
I’ve also applied for a grant to do a college course. I don’t have a specific course in mind, it’s just a way to meet people and keep my brain working!!
I’m continuing to blog. I feel that it’s a good way to process what’s going on in your head and it keeps the cogs turning!
Lastly I have my baby!!! Chiari Support UK! This gives me a sense of purpose, a reason to get up in the morning, I help so many people and keeps me busy. I’m very proud that I had the confidence to start the page In the first place and very proud of how well it is doing!!
It just shows no matter how dark or how bad it is it can always get better if you think positive and you have the right people around you that care!
Please join us at Chiari Support UK
Love Karen x x x
I said to myself when I finish Uni I’m never writing anything again!! Yet here I find myself blogging and actually enjoying it!
Blogging is never something I’d ever thought of doing but it was suggested to me as a means of helping to cope with my depression. I wasn’t sure if it would work but I was at my wits end and would give anything a try!
It turns out it works and I enjoy it! When I finish one blog I am no sooner thinking of the next one. By writing I’ve learned to make sense of what has happened to me and try and get my head around it.
The great thing about blogging is it’s personal. This makes it easier to write as you are talking about your own feelings and experiences. No one can question how you feel!
I feel blogging is helping my depression. It makes you deal with feelings and thoughts you have bottled up and tried to forget. Sometimes just by writing it down it’s almost like throwing it away.
I’m needing a holistic approach to combat my depression such as psychology, medication and making friends. However blogging has become a major part of my life now and I recommend it to anyone!
Please join us on chiari support uk
Love karen x x x
It’s horrible living with a tag around your ankle and an invisible force field around your house! I definitely know the meaning now of prisoner in your own home!
A “normal” day consists of me sitting in my chair all day helping people on my Chiari Support UK page and also DDH UK for which I’m a “buddy” to help people through their journey. Days can get long! There’s only so much tv you can watch and not many people walk by my window!
I think being “trapped” is one of the main reasons for my depression. I can’t just go out whenever I want anymore. I’m totally reliant on other people now. Chiari has taken away a lot and my independence is one of them.
I think because chiari is an invisible disability people don’t realise how horrible it is to suffer from the condition and how bad it affects your daily life. It’s understandable that people are busy and have their own lives but it would be nice for people to stop for a second and put themselves in the shoes of someone with chiari, depressed, housebound etc and see how hard it is.
A positive that has came out of it is I help so many people because I have suffered. I use my experiences to help people on my Chiari Support UK page and the members are all so appreciative and thankful. It gives me a purpose and a reason to get up in the morning.
My goal for 2017 is to make some new friends and find some ways to get out of the house. The doctors aren’t helping with my depression so I’ll need to try and help myself!
Please join us on Chiari Support Uk
Love Karen x x x