CSF Leak: My Blood Patch Experience

New video which shows the recovery from my most recent blood patch. Every Blood Patch experience is different and trying to manage having one every month whilst trying to fight my other chronic illnesses has been pretty difficult for me. It’s been 2 weeks since my op and I’m still really struggling. This video was filmed whilst I was in hospital and during the first few days of recovery and I was in pain and uncomfortable, so I hope it is a really honest portrayal of the pain I’m in and don’t often show. As I sit here now, having had an awful headache all day, It’s also been a very frustrating experience but with positives and negatives. See how I got on following my surgery and if you like my videos please subscribe to my Youtube channel.

You can also see my Pre-Op Video Here.

Simple Stitch Shortbread

I’ve been thinking about doing this recipe for a while as I used to be obsessed with biscuits and shortbread was my absolute favourite. I used to buy some Tesco everyday value shortbread and munch my way through the whole pack! When I was up early on Sunday morning for no apparent reason I decided I need to give in to my cravings. Plus, Mike had treated me to some Lilo & Stitch Cookie cutters that I’ve been dying to use since he got them in the January sales! So here is my super simple vegan, gluten free and refined sugar free shortbread recipe and of course what can be better than biscuits that are shaped like Stitch! My Mum said they are the best biscuits I’ve made!


 

Makes: 16 (Will make 20 in traditional rectangles)

Takes: 35 mins

Allergens: Almonds. You could just swap the almonds for more flour.

Ingredients:

  • 125g Coconut Oil (Make sure its slightly softened)
  • 55g Coconut Sugar
  • 100g Buckwheat Flour (plus more for dusting)
  • 80g Ground Almonds
  • 1tsp Vanilla Paste
  • 2-3tbsp Maple Syrup
  • 1-2tbsp Water

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  1. Preheat the oven to 180c and line 2 baking trays.
  2. Cream together the the coconut oil & coconut sugar.
  3. Sift in the flour and stir together.
  4. Add all the other ingredients until you have a smooth paste. If too dry add extra water and/op maple syrup.
  5. Turn onto a dusted work surface & roll out until it’s 1cm thick.
  6. Cut in rounds, rectangles or Stitch shapes 😛
  7. Chill in the fridge for 10 mins
  8. Bake for 15mins until golden brown.
  9. Resist the urge to eat them and let them cool on a cooling rack before enjoying. 🙂

CSF Leak: Blood Patch Surgery

I have realised that I talk quite a lot about my Postural Orthostatic Tachycardia Syndrome (POTS) & Ehlers Danlos Syndrome (EDS) but I tend to leave out my Cerebrospinal Fluid Leak (CSF leak), which is funny because it was my bad headaches that started this whole journey. It’s also strange as its the reason I’ve been had 4 surgeries in the last 5 months. So for my final surgery I wanted to make this video to give you a little insight into what my Blood Patch surgeries have been like. This video is all about the pre-op  process. I talk about what happens in the procedure and what my hospital bag essentials are 🙂 Video all about the post-op is coming soon!

Please Subscribe to my Youtube Channel 🙂

To The Customer Who Judged Me For Sitting Down On The Job.

This is another piece I’ve just had published on the Mighty which I wanted to share with you.

After working in the retail sector for as long as I have, I’ve learned that customers are inquisitive and tend to point out when something is different. In my four years of working at my local cinema, I have been asked a plethora of questions about the cinema: “Can I take my drink in with me?,” “I’ve only got cash – is that alright?,” “You’re Screen 3, Row H, Seats 10 and 11″… “So can we just sit anywhere?” (*facepalm*). Other times I get asked slightly more intrusive questions: “Why do you spell your name like that?,” “Do you have a boyfriend?,” “Did you intentionally dye your hair to match your shirt?” (my dip-dye pink perfectly matched the stripes down my sleeve – not intentional). Eventually you learn how to answer these questions and let them brush over you. However, when I returned to work between surgeries I did not have such a great experience with customer questions.

The first day I went back, I tried (way too soon) to work as if nothing had happened, but after just short of an hour on my feet I couldn’t hide the tears from the pain in my back any longer and I had to sit down. So my subsequent shifts I was allowed to sit and take guests tickets, using my stick to get up to use the scanner for e-tickets. Many of my colleagues saw me struggling with my stick and asked why I’d even bothered to come back to work between surgeries (the answer: because I need the money, but that’s a separate issue entirely). Customers, however, were not so kind.

Although most comments were innocent, one comment still sticks out in my mind. I said my usual “Hi guys” as I waited to be passed the tickets, but without any pleasantries this customer said, “Why do you get to sit on a chair and he doesn’t?” I felt this was a little rude and direct and, although I shouldn’t have to divulge the fairly personal health reasons as to why I was sitting down and my colleague on the other side of the building was standing up, I simply said, “I had spinal surgery a few weeks ago” – an honest answer but definitely not the full story. When I had revealed this small part of my journey to other inquisitive customers, they would reply with an apologetic “good luck with that,” but instead, this customer said, “Don’t give me all that.” This upset me, but not wanting to let it show I took their tickets and sent them on their way.

I didn’t want to stay quiet. I wanted to tell him I was a 21-year-old chronically ill woman who has been in constant and often extreme pain for the last two years, who was unable to stay at her university due to debilitating symptoms, who needs daily medication to manage these symptoms and who has already had three surgeries in the last four months (the most recent being two and six weeks earlier) and was awaiting a final one but needed to work in order to make enough to get by. Sitting on a chair does not stop me from doing the same job which enables you to see your film; in fact, it enables me to do a job I wouldn’t be able to do without sitting.

The amount of people who simply felt the need to point out I was sitting down was astonishing to me, especially since my walking stick was clearly visible. With most of the comments I used my usual trick of laughing along with the customer and brushing it off. Many innocently remarked that it must be nice to be able to sit down. And yes, it has been nice in the sense that it has allowed me to continue working despite my surgeries, but the fact I am in pain and unable to stand and walk unaided is not so nice. If I had needed my wheelchair rather than just my stick, I wonder how many people would have said, ‘Oh it must be so nice to be able to sit down’. But no one asked me why I needed a walking stick, so…

Dear Customer,

If anyone is sitting down at work where you would normally see someone standing, there is probably a reason for it. An important reason that meant an employer had to make reasonable adjustments for that employee to do their job. The reason is none of your business. If someone is genuinely interested, I am quite happy to advocate for my conditions. I take great pride in spreading awareness.

But please do not ask and then be rude about the answer. You asked me not to “give you all that” – I barely gave you one percent of my journey. I told you about my surgery and you still gave me grief. I wish I could stand up without being in increasing pain. I wish I could do my job without having to answer such questions and having my weakness pointed out to me over and over again. All I’m doing is trying my best to pay my way in this world. Surely you can understand that.

I’m 21 – I should be graduating with my friends, going out to parties, being “young,” but I can’t because I’m sick and I will always be sick. So the next time you see someone or something that is different, please don’t point it out. There is a reason for it and you don’t know how much pain your words can cause. Next time, please think before you speak because someone may be fighting a battle you know nothing about. Be kind, always.

Many thanks,

The chronically ill young woman sitting down at work.