My Invisible Journey – One Chronic Year On!

Firstly, an apology that I’ve been so incredibly quiet on here lately. I’ve been so focused on getting some great videos out there for you guys that I have neglected my blog a little. But as I’ve said it I often so much easier for me to talk than it is to type. So, if you’d like to catch up on whats been going on in my life for the past few months please head over to my Youtube channel.

Anyway, what I came here to say was that it has been a year since I finally stopped pretending that I was okay and told you all about my invisible journey with chronic illness. I’d been having major problems with pain, palpitations and headaches but doctors were constantly dismissing my problems. I knew something was wrong and had to leave my beloved UEA because I could no longer cope. Having no idea what was wrong, I set out on a journey to diagnosis. I was very lucky and this was a quicker process than it is for most; I found the right doctor who knew exactly what was going on. In February & March 2016 I was diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome & a suspected CSF leak. I had to ‘come out’ about my conditions last year as I was 2 weeks away from my first surgery and I wasn’t going to be able to hide my issues quite as easily as I had done with a hole in my head. I was so scared to tell people, I was so worried about what people might say, I didn’t want people to think I was lazy, making excuses or being a drama queen. But getting it out there in the open was so freeing and I realised by continuing to share my story I could spread awareness for these little known conditions and help others who were struggling both practically and to help them feel less alone.

So, since I first posted about my invisible journey , a crazy amount has happened, I can’t believe I’ve fitted it all into one year. So here’s your update. I know many of you will have seen these events unfold as you have followed my story as I’ve tried to become an advocate for my various conditions but I also have many new friends who have been absolutely amazing in accepting me, disability and all, but who now know me well enough to start asking more questions. So here are some answers.

My CSF Leak was fixed!!!

I thought I’d start with the successes. From November 2014 I had regular headaches, I’d always had headaches but they were becoming most days until by mid 2015 they were a daily struggle. I was put on every medication going but nothing was helping. In January 2016, after being kicked from pillar to post and even having a doctor MRI the wrong part of me, I found the right neurologist and he suspected a CSF leak. Cerebrospinal fluid leaks are rare and are mainly caused when a previous surgical procedure ruptures the dura which is where your brain fluid is held suspending & protecting your brain. Mine was spontaneous and caused because my EDS meant my dura was so vulnerable that it broke. We do not know when or how but I am very scared of it reoccurring. The headaches caused by a CSF leak are constant. I longed for a day when I would have no pain in my head. CSF leak headaches are often referred to as ‘suicide headaches’, there is a good reason for this and I never want to experience that level of pain again. In November 2016, 3 days after my 21st birthday I had ICP monitoring, where a bolt is put in your head to measure the pressure. After 4 days in hospital in London it was confirmed that my pressure was low and that I did indeed have a leak. My mum watched in horror as they crudely pulled this bolt out of my head and stitched me up, it was nothing in comparison to the pain of my bad headaches. I was then told that they thought they could fix it. When you have a chronic illness it feels incredible when a doctor says they might actually be able to fix something. I had to have an epidural blood patch, I ended up having 3. A blood patch is a procedure where they take blood out of your arm and inject up to 40ml into the epidural space in your back. As sedation doesn’t work too well on me, I was fully aware throughout the procedures and could feel the pain and the strange warm fullness as the procedure was done. The first, in January of this year was not too fun. My spine was bruised and I ended up with awful back pain. The procedure was repeated in February and March 2017. I felt a little better each time but knew it hadn’t worked. It took a good month after my last patch to really feel the benefits and despite still having chronic headache and the occasional migraine, I have been completely free of the ‘suicide headaches’ since, and even have some days where my head is pain free. I am so thankful to the 2 doctors who gave me some of my life back. I am so lucky that this worked, I can, and do, take a ‘normal’ headache any day of the week.

I have Postural Orthostatic Tachycardia Syndrome.

POTS is a form of dysautonomia which affects all the automatic functions in my body I explain it so much better in my videos What is POTS? & Living with POTS. My POTS story has remained fairly unchanged. My medications mean I can get up and move around without too much issue but I still find it extremely difficult to do any kind of exercise, including walking, or stand up for long periods. This is one of the main reasons I use my walker, so I can sit down at any point and so I can carry things round. My main problems are breathlessness, dizziness and fatigue.  I can also get pre-syncope, mainly if I eat too bigger meal. To manage my POTS I’m on daily medication. I also don’t have refined sugar, alcohol or caffeine to keep things under control. I am currently in a battle with the hospital who want me to come down on my medication, despite having not seen me since July 2016 and me still really struggling with my symptoms. I am seeing them again in February and hoping to come to a reasonable agreement.

I have Ehlers Danlos Syndrome

This is the big one which causes all the others! I also have a handy video here which tells you what EDS is here. EDS is the cause of my leak, POTS and way more. It is multisystemic and affects everything from swallowing to bladder. It causes GI issues which is why I can’t eat certain foods. The main problem for me right now is the constant chronic pain, plus the acute pain from a joint not sitting in the right place. I rely on my walker when my hips and knees need support, sometimes its so bad I need my wheelchair, other days my shoulders are worse than my legs so can’t use my walker or stick easily. I can move around indoors unaided but have to sit down a lot because of my pain &/or my POTS. I recently saw the doctor who diagnosed me nearly 2 years ago and she has referred me for a 3 week rehab programme which I am looking forward to hopefully doing over Easter or in the summer. I have tried everything to ease my pain. In the beginning I was on every medication possible, I currently don’t take any regular pain medication purely because they don’t do anything for me and many of them mess up my POTS medication so badly, that it’s not worth it. I practice mindfulness, do my physio exercises and try and pace my activities to try and help but I’m in a constant fight with my body with can’t hold itself together; I have good days and bad days. My body is weaker than ever after my surgeries for my leak and I’m trying everything to get my strength back but it’s not coming easily. I’m hoping the rehab programme will make a difference but I try and do the best I can to live as well as possible despite this. Recently I attended the EDS UK & HMSA conference which was really insightful into the research that needs to be done. There is hope for us zebras in the future.

So much has changed since this time last year. I am so grateful my Mum & Mike for waiting on me hand and foot during my season of operations and who have got me to where I am. I went back to work at the cinema in between every operation. I continued and increased my dog walking and stayed on at guides. I became an Avon representative and am now a sales leader with team of my own. I started my successful chronic illness vlog on YouTube where I hope I help others and have gained so many friends from. I am now back at uni straight into the second year of my drama degree (where I left off) and have been for over a month (though it seems like so much longer!). I’ve learnt so much about my conditions and how I can manage them a lot better. Don’t get me wrong it’s a huge struggle trying to do my degree as well as looking after myself. Just cooking, washing up, showering and laundry are very difficult to keep on top of let alone getting to my classes and keeping up with the work. But I am absolutely loving it and I’m so grateful to be back. I’m so proud of how far I’ve come and I hope another year will mean further improvements. It’ so hard to not be able to do things you used to enjoy but I’m determined to make the best of it and keep doing the best I can and ask for as much help as possible.

In last year’s post there was a lot of worry. I did lose some friends but I’ve made so many new ones across the world. I was worried about social situations before but  it was because I was hiding, now noone thinks twice if they see me lying in the corner of the room mid lecture 😛 I’ve become so much closer to my mum and I don’t tell her enough how much I appreciate her and everything she does for me. Sometimes I still worry doctors won’t understand, but I can now give them the knowledge and tell them what I need, I’m not scared of being called a liar anymore after all I’ve been through. My financial situation improved when I found jobs which I can do and which I enjoy and I managed to get myself into an okay place. I got back to uni, I DID IT! I still worry about the future, I have no idea what life will throw my way or how I’ll be but, firstly, I’ve got so much better at living in the present and realising how far I’ve come, secondly, If I can get through the last few years I can do pretty much anything and finally, I know I can do pretty much whatever I put my mind to, I just might have to do it a little differently!

This is how I ended last years post and it still describes this perfectly:

‘I am told that I am brave. I’m no braver than the next person everyone has their battles, everyone has their own little victories. I’m not doing this for sympathy or admiration. This isn’t my sob story VT before I emerge in front of the judges as a star. This is my life everyday: the pain, the symptoms, the treatments, the guilt, the fear but most importantly the hope that something better will come…eventually. I know I can’t be fixed but I know I’m going to die trying to get better. Thank you for reading and hopefully understanding a little better.

‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’’



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