The truth behind the gram…

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!

Dress @zara @hot4thespot
Location @pickwellfarm

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.

Dress @zara @hot4thespot
Location @pickwellfarm

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!

Dress @zara @hot4thespot
Location @pickwellfarm

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.

Dress @zara @hot4thespot
Wellies @tuclothing
Location @pickwellfarm

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.

Dress @zara @hot4thespot
Location @pickwellfarm

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.

The Power Of Pink

The colour pink is the colour of universal love of oneself and of others. Pink represents friendship, affection, harmony, inner peace, and approachability.

https://www.bourncreative.com

These words, are the words in black & white, up above the dressing table in my bedroom in my Southampton home, on a peg board I got for Christmas from my hubby. But why were they unobtainable?

January had come around and after an amazing end to 2018 I was full of enthusiasm and confidence. In that last quarter I had set up my new blog name on Instagram, begun talking to other plus size babes who were like me, and making some real connections with them, and attended the @curvefashionfes, which has literally changed my life.

Just before New Year I had the attention of 300 followers and celebrated with a typically Instagram pic. If you would like to see how cliche it is go check out my Instagram feed and whilst your there show me some love and share me with your friends. See, my blogs are equally as predictable with self serving plugs, lol.

Suit – Manon Baptiste @ Navabi
T-shirt – Primark
Shoes – Topshop

What I didn’t know was to come, was an unexpected diagnosis. As soon as the New Year had begun I had cold like symptoms but had not long started a new job, in an interview I worked really hard for, I genuinely was loving my new job and colleagues and so didn’t want to be off sick and let them down. I’m a secondary school teacher and pushed my way through that half term until finally in the February holiday I couldn’t keep going. The cold symptoms had got worse and I was suffering extremely painful headaches. A telephone consultation with my GP sent to me A&E. I actually went late Wednesday evening with my neighbour, who just so happens to be one of my best friends too, the symptoms had got so bad I was unable to drive without feeling dizzy and my husband had to stay at home with our two babes under 4. We went, we saw, we waited and waited and then we left. I told her I was feeling better, which I was a little, but mainly left because I couldn’t bear to wait in there any longer. The next morning came round and the headaches had gotten worse again, I rang the GP again, who was a little cross I didn’t sit it out the night before and insisted I went back to the hospital.

I was seen quickly, they were pretty sure I had the flu but as a precaution the consultant on duty arranged for me to have a CT scan. I got back from this scan and was diagnosed with Sinusitis, I was happy with the diagnosis and the at home care advice they had given me and so waited patiently for the discharge papers to leave. I was on my own, it was Thursday morning, and Dan, my husband, had to stay at home with the kids, I had got a taxi to the hospital that morning. Then the Dr reappeared and instead of passing me the discharge paper work she said the Radiographer had spotted something on my CT and wanted a Neurologist to have a look over it. What….!?! Nothing else was said and I was left waiting for sometime, in that time my mum came home to look after the children and Dan met me at the hospital.

Suit – Manon Baptiste @ Navabi
T-shirt – Primark
Shoes – Topshop

And then some hours later came the Neurologist, a tall and dark man who asked if he had met me before. I hadn’t, told him so and we agreed I must have one of those faces! Unless of course he follows plus size blogs, eh? Anyway back to the matter in hand. He asked me lots of questions about my medical history, including that bariatric surgery I had had, if you want to know more read the blog post from before this one. He asked me about my sight, which turned out not to be a coincidence, earlier in the year I went for an eye test, was given a prescription and blamed this for my headaches. He made me walk in a straight line, which I was unable to do, but I have never been able to do. I told him all about how my family nicknamed me ‘St Johns Ambulance’ as I was accident prone and always falling over, when I was little I broke my nose multiple times! After some thought he told me the radiographer had spotted by brain sitting low in my CT scan and he could also confirm this. It had a name too, Chiari Malformation, turns out I would have had it since I was born. Basically the opening between the skull and the spinal cord is too small and my cerebellum and brain stem, the lowest parts of the brain had fallen through the spinal cord and caused pressure in my skull because the fluid surrounding the brain cannot flow to and from it. This leads to an abnormal amount of pressure surrounding the brain, the cause of my headaches. The flu like symptoms had brought it on more recently as all the coughing had pulled the brain further down my spinal cord. In fact, not just coughing could do this; but sneezing, laughing, bending over and even shouting. I have memories of cheering on my students across the field at my previous school on Sports Day and having the most awful headaches but just thinking it was a mixture of the heat and exhaustion.

Suit – Manon Baptiste @ Navabi
T-shirt – Primark
Shoes – Topshop

I left hospital that day with a diagnosis, a follow up MRI and minus a driving license. The MRI just a week later confirmed my diagnosis and because of limited NHS resources I was unable to get a Neurosurgeon appointment until May. And here we are now. He showed me my MRI images and said it was not the worst Chiari Malformation he had seen, but the pressure building in my skull had also caused a cyst like pocket of fluid in my spinal cord which explained the twitches and feelings of hot, cold and someone touching me on my arms and legs when there was nothing there. If I laugh too hard with my friends, bend over to pick up toys for my children or just get a harmless cold I am in pain. In some episodes I get dizziness that will last for days and clicking noises inside my head that drive me to madness. I find it hard to concentrate, my spoken language can become confused, motor skills worsen and I feel endlessly tired. So whats next? The Neurosurgeon talked me through decompression surgery. They remove part of the base of the skull and the top of the spine in the aim to relieve the pressure, he described a long and hard recovery that would see me off work for months and may not even relieve my symptoms. And he left me with a choice, one I don’t really know the answer to. Do I have the surgery or not? I’ve joined some online support groups, re-emailed my surgeon, been put on the surgery waiting list and have an appointment with occupational health in the next week but still don’t fully know my own answer.

So what brought me here, the pink suit, the gifted suit from @navabifashion and @bethany_rutter, a blogger I had been following since my Instagram journey had begun. P.S. I was a little late to the party. Out of the blue I was sent an email from Bethany saying that she loved my feed, what little there was, I had been on hiatus now since February, so was surprised, and she asked if there is anything I would like from Navabi as a gift. Er, yes, yes there was! I have even been featured on their website, check me out here; http://www.plusize.co.uk/5-underrated-babes-of-instagram/

The pink suit, this beautiful pink suit has done more for me than it knows. NO, I haven’t done a blog post a month, NO I haven’t posted a picture at least once a week and NO I hadn’t loved myself everyday. But this suit reminded me how fucking fabulous I am! My husband took these pictures, the full time photographer after getting a new job this year, in the garden of my house ducking and weaving around my healthy, happy children playing around us. No, I couldn’t drive to some fancy Instagram’able’ location, I didn’t get this post up within a week of being sent the suit, but I could still get pictures that are hot and show how happy I am when surrounded by those I love. SO, thank you pink suit, thank you Beth, thank you Navabi, thank you to the power of pink and thank you to my family and friends. So, come on, give yourself a hug…

For more information on Chiari Malformation check out;

https://www.nhs.uk/conditions/chiari-malformation/ https://www.brainandspine.org.uk/our-publications/booklets/chiari-malformation/

And for links to the suit:

https://www.navabi.co.uk/product/cropped-crepe-trousers-59536/?colorcode=3800 https://www.navabi.co.uk/product/crepe-double-breasted-blazer-59002/?colorcode=3800