Chiari and a little help from your friends

As you all know I’m struggling from severe depression. I honestly wouldn’t wish it on my worst enemy. There’s no escape or relief or anywhere to run and hide. My only time I’m at peace is when I’m sleeping. 

Depression also makes you feel very alone. However this week felt quite different. A selected few people seen how much I was struggling and wanted to show me that I wasn’t alone and I didn’t need to fight this alone. It felt as if a bit of weight was lifted. 
These two special ladies sent thoughtful presents to cheer me up. They had put a lot of thought into them and took a lot of time to put them together which meant a lot. 

These same ladies seem to know when I’m at my rock bottom and send me inspirational messages to bring me back up. 
They have gave me a bit of a spring board to help me get myself out of the deep hole that I’ve been in for a very long time. It’s making it easier to see the positives. 

From Monday it’s been a more positive week than it’s been in a while. I usually get moments during the day when I feel down, when it feels like a dark clouds came over me. I’ve not felt that this week, which is great! 
I’ve put some positives things in place for the near future to try and keep me focused and positive. I have enrolled to college to do some distance learning courses to keep me busy and keep my head going. I have a trip to Dumfries at the start of April to see family and the Chiari girls. I am then going to apply to the Open University to do the Sociology degree. I’ll continue to think of things to keep me busy, focused and positive. 

I have chiari, Syringomyelia, hydrocephalus, I don’t produce steroids and have had 15 plus brain ops and would rather that than depression over and over! It’s a horrible illness!! 
I just wanted to show how thankful I was for the help fighting the illness because I need all the help i can get. 

Thank you Lisa and Lynsey x x
Join us on chiari support

Love karen x x x


Chiari and depression go hand in hand!

“The difference between you and me is that when you wake up , your nightmare ends”

That quote sums up how I feel on a daily basis!
I thought I would only have to deal with physical pain. I never thought when I had my surgeries I would have to go through a daily mental struggle too! Chiari is an invisible illness and now you are fighting another. Depression is so difficult to fight because you can’t see it and you don’t know when it will strike. 

Depression is such a lonely illness. I want to be alone but I don’t want to be lonely!

“I am the type of person that will sit in the bathroom and cry, but then walk out like nothing ever happened”

That quote really sums up how I deal with my depression. I think a lot of people can relate to that quote. You don’t want anyone to see you cry because you don’t want them to ask you what’s wrong. The truth is you don’t really know what’s wrong yourself! You are also scared of what advice you might get!

” You can’t just wake up and say oh, I wanna be happy, and be happy! Believe me, I’ve tried!”

It’s like telling someone with cancer to get better, it just can’t happen!
The worrying thing about it is you don’t know when it will go away, or if it ever will. If you have a cut or bruise you know in a few days it will be gone. You don’t have that luxury while suffering from depression. In actual fact it might never go away, and that is a horrible thought. 

“You feel like a prisoner in your own mind”

The trouble is it’s all in your head and there’s no escape or respite, it’s 24/7. If you have a headache you take some painkillers and get some short term relief. Instead it’s a struggle of flashbacks of things you don’t want to remember. 
The only escape is sleep. If you’re sleeping, you’re not hurting. On my worst days I find myself going to bed earlier and earlier because I know sleep makes it all better. 

I can only describe my current state like being at the bottom of a big black hole trying to get out, while I watch the world go by living their lives. Its hard sometimes when people are only there for the good and not there at the black hole with a rope to help you out. It’s okay though while looking up I’ve seen the light at the entrance of the hole. 
The two pieces of advice I could give is there is always a light at the end of the tunnel so continue to think positive and remember it’s not your fault! Depression is an illness, don’t ever feel it’s something you’ve done or not done. 

This blog is the most honest I’ve been about my feelings. I have wrote this in the hope it helps other chiari sufferers. 
Join us at Chiari Support 
Love Karen x x x

Chiari – no one knows!

So what actually is chiari??
Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.
From speaking to many fellow chiarians the most frustrating thing is going to a Doctors appointment and you knowing more than the Doctor about your condition. It’s even worse when they bring up google on the computer. It doesn’t fill you with confidence!!! It would be nice to go to an appointment that you don’t need to teach the Doctor about chiari. 

Recently I attended accident and emergency due to my worsening chiari symptoms. I had to wait six hours to see a Doctor so I was tired and in agony and just wanted to lie down! Eventually I was seen by this young Doctor who greeted me with ” I hear you have a headache”. So you can imagine how angry that made me!! Then she says ” I see you have a shunt so that’s because you have chiari?” I say no that’s because I have hydrocephalus. By this point you see the Doctors eyes glaze over. She then says so I think I’ll phone ward 64 as they know your condition better. So I wait six hours for that! Unfortunately it happens all the time! 

On a more positive note I got a phone call from my GP. She said she had medical students doing neurological research and she thought of me. She asked could she bring them to my house so I could teach them about chiari, I jumped at the chance! Any opportunity to raise awareness or educate health professionals is priceless!She brought 5 medical students to my house and I told them about my journey and all about chiari. It was great to have people genuinely interested and asking questions. They said it was interesting and useful. I also told them about the Chiari support page and I told them to read my blogs to get a better insight into the life of someone living with chiari. 

I understand and relate to the frustration and have experienced it myself. I’ll continue to blog and take every opportunity to raise awareness and educate people on chiari so that less people have to experience that frustration in future. 
Please join us on chiari support

Love Karen x x x