For sometime now there is something I have been holding back from you, probably because I don’t want it to happen. Actually, maybe not so much that, but more I don’t want it interrupting my life. And one big and important part of my life includes my blogging, Instagram life and connecting with other like minded people like you.
So, whats up? Well if you have read my ‘Power of Pink’ post you will know that earlier this year I was diagnosed with a brain malformation called Chiari and a Syrinx on my spinal cord. At the time of the post I was left with a choice; whether or whether not to have decompression surgery. Well a lot has happened since then that I have kept from you.
I went back to my neurosurgeon in late August as some more strange symptoms had appeared. The most distressing was losing some control over my bowel and I skimmed over some pins and needles I had been experiencing (that btw I didn’t think a lot of). Well the mood in the room changed as soon as I mentioned the pins and needles. It turns out the Syrinx on my spinal cord was now causing nerve damage and the pins and needles in my limbs was the start of a degeneration that could lead me to life in a wheelchair. It was a shock to say the least, I no longer have a choice, I now have to have the decompression surgery. Again, if you want to know more please go and read my ‘Power of Pink’ post.
He told me it would be in the next few weeks and at the longest a couple of months. It has now been six weeks since that appointment. And last week on the Friday I finally got the call, and I was booked in for the Wednesday coming. I went into overdrive to organise everything in just a few days. Childcare for my young babes, a date night for me and Dan before a long recovery and money planning as I was going to be off work for sometime. I also asked Dan if we could go pumpkin picking. A little early I know, but it is something we do as a family and with friends every year, and this October half term it was looking very likely I would be in hospital. So we went, in September!
We squeezed a lot in that weekend. Then Tuesday morning, the day before, I got a call to say my op had been cancelled. My neurosurgeon is also the paediatric neurosurgeon and an emergency had came in and they needed my spot. Now, I’m a mother and my first thoughts were thinking about that poor family. But then as it sunk in I felt frustrated too. Everyday my pain gets worse, I get more dizziness and the world often feels like its spinning. As I said earlier I hate that this condition has come and interrupted my life! I was in denial for a long time and I kept working up until a week and a half ago but then my body just couldn’t do it anymore.
This condition has put my life and my families on hold and it has meant missing out on some of my friends most important life moments. As I write this I should be on a hen weekend with one of my best friends celebrating her last few days of singledom, but I’m not, I’m too sick. Her wedding is also in just over two weeks and she had asked me to be a bridesmaid. It is looking very likely now that I won’t be there to walk down the isle with her and support her at her wedding, and its killing me. If you’re reading this I’m sorry and I love you!
In the spirit of pretending is not happening, I’ve carried on posting beautiful pictures on here. But what you don’t see, or what I don’t tell you, is that I am in pain, I cant walk around for very long without needing help, I rely on a lot of help from friends and family to help with my kids, I feel sick, dizzy and constantly tired. My husband behind the camera and my mum are looking after me, the house and the children.
So its Sunday, I am actually going to get myself dressed and made up and go the last part of the hen do today, an afternoon tea, and get my husband to take some more beautiful pictures of me. Because these are the things that make me feel good. I’m going to continue playing with my children right up until I go in, and cuddle on the sofa with my husband until the long recovery begins. Hopefully I will be on the surgery list for this week, watch this space. I’ve spoken about ‘behind the gram’. What I have been posting is not what I have been living and I think we all need to consider this when we look at each others picture perfect feeds. We need to be kind to each other as we don’t really know whats going on. Some of you openly talk about your struggles with health, which is so important, I think you support those who might feel alone with their own conditions, like myself. It was in the news this week about a new phenomena about ‘sadfishing’, i don’t think its about that at all. Its about sharing your/our experiences to support, educate and connect with like minded people. Two of you I have even confided in, and thank you for listening, or should I say reading. My goal for recovery is to get myself to the @curvefashionfestival and hopefully I will see some of you there! It was that event that kick started my whole SELF LOVE journey and I want to come meet all you lovelies in person.
For more information on Chairi malformation and Syrinx check out these websites. The Brain & Spine Foundation and Ann Conroy Trust have been amazing and I have phoned them when I have needed support and advice. And if you have any of the symptoms like; severe headaches when laughing, shouting, coughing or bending over check out the NHS page.https://www.brainandspine.org.uk/our-publications/booklets/chiari-malformation/ https://www.nhs.uk/conditions/chiari-malformation/ https://www.annconroytrust.org/
And for more information on the surgery I’m having please read this NHS document.