Happy December Everyone Sorry I’ve been super quiet on here but a lot has been going on! If you’ve missed it you can see what I’ve been getting up to every day throughout December over on my Youtube channel where this year I’ve got involved in the age old Youtube tradition of Vlogmas! So if you’d like to see me join in on my first Livewire1350 Charity Christmas Single, Have Essay Deadlines, Lose My Walking Stick and Pimp My Walker Christmas Style you better get catching up 😛
Merry Christmas Everyone! Hope you have a happy & restful (symptom free) holidays!
Dysautonomia Awareness Month may be over but Dysautonomia is something people have to live with every day of the year. I made a video last month with 4 other lovely ladies who were all brave enough to share their story about Living with POTS. Here’s the video to give you an insight into what it’s like to live with dysautonomia.
I also haven’t kept you up to date with my vlogs since leaving uni so here you can find all the videos from the last month or so. It includes my vlog of the HMSA & EDS UK conference and what I learned from it and a video calling out for Questions for those who have been asking me to do a University with Chronic Illness video.
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.’’
With less than a week until I go back to uni, and as of Thursday I was officially deemed fit to return, it’s been a busy week but at least it has finally been a productive one. Some great highlights included going to friendsfest with my cousin and shopping for Becky’s birthday. Next week is obviously going to be exciting but very busy, stressful and draining too but really looking forward to getting back in to the swing of things. Saying my goodbyes and see you laters so far has already been pretty scary and I know there’s lots more to come but I want to thank everyone who has stuck by me these last two years whilst I was really unwell and to all those who have supported me and believed in me enough to get me back to uni. Looking forward to starting my biggest adventure with EDS so far. I was also on TV this week I was in episode 22 & 23 of the new Noel Edmonds gameshow Cheap Cheap Cheap which was filmed back in January just ten days after my first blood patch operation so I’m definitely not quite myself in the first episode (last 5 mins) but am much more relaxed in the second (first 10mins) I’ll link the episodes below the video if you fancy a giggle. Thanks for watching and see you next week!
In this episode of Adventures with EDS; Everything gets a little muddled because lots of the bits I filmed ended up having no sound. But I get a new phone, See 4 of my best friends in the same week, get frustrated with university and the doctors and go on a caravan holiday to Great Yarmouth with my boyfriend Mike and his family. Due to my niece and nephews running around I didn’t really get to film much. Normality with proceed this week. I also go and see the first film in our newly refurbished screen 12 at work and did notice that Tom Cruise’s teeth aren’t symmetrical. I get my eyebrows done as a treat for keeping my trichotillomania at bay.
So I’ve been thinking about writing this post for a while but so far haven’t been able to bring myself to do it. Purely, because this means that soon I’m going to have to say ‘see you later’ to my best pal!
But first some context: I always used to be scared of dogs! I never really knew anyone that had a dog when I was growing up and when a primary school friend’s Greyhound jumped up on my lap when I was about 6, I was completely put off! I had a lovely cat at my dad’s who I loved, so I was a cat person.
As I got older I got much less scared of dogs. Today, I don’t know how I was ever scared of these beautiful, intelligent creatures, these days I say hello to some of the biggest dogs in the park. But I started seeing more smaller dogs and became happier around them. My Aunt got a frenchie followed by another one 3 years later and cute images of puppies all over the internet had me wanting a dog. I went to uni as was far too distracted to think about it again, until I got sick. My human friends began disappearing as I got sicker and eventually had to leave uni. And I can’t pinpoint the exact moment I started begging for a dog of my own but it happened. But my mum, who has never been into pets, would not budge. I constantly saw a mixture of adorable puppies and brilliant service dogs across my instagram feed and wanted in. Two Christmases ago, my mum made a discovery that she could live with and it was called Borrow My Doggy. Basically a website where, for £10 for the year, you can look after other peoples dogs whilst they were at work or on holiday. I signed up immediately and spent several months searching and sending messages but with no luck. It had got to March and I had given up looking and hoping, until one day when a lady messaged me saying she had a 5 month
old cockapoo who she had got as a Christmas present from her partner and spent everyday home alone whilst they were at work. This puppy was the most adorable, white, puffball I’d ever seen. So Mum and I went to meet them and I fell a little bit in love!
Molly was cheeky and, as yet, unhousetrained and there was a battle each morning to get her harness on without her chewing it to pieces, a problem which was eventually resolved with age, but we had each other. For me, she gave me purpose, something to do on the days I would’ve been doing nothing and would’ve stayed in bed and moped. She stopped me getting further stuck into the mess of deconditioning. She’s pretty much the reason I have any strength left in my legs. But for me, and Molly, it stopped our loneliness. We both had a new best pal that didn’t judge or care. We were just happy to have each other. She became my best friend.
She cheers me up whenever I feel down, we both love cuddles, often being my living teddy bear and keeps me active. We walk, we play, we go and meet everyone and anyone
at the park. I’ve had to feed her some very interesting things, Tripe being the most notable, I never want to have to smell that again! We’ve had adventures at the beach and had lots of fun with a hose and paddling pool in the garden. I spent the morning of my 21st birthday with her and my family. And she has visited my nans and kept her wonderful nature when my balinese baby cousin tried to sit on her 😛 I’ve watched her grow from a little, fluffy puppy to a beautiful adult dog. I know her quirks and charms, and to never let any kind of paper get within a inch of her. I’ve taught her bit and bobs along the way. I taught her to twirl and to high five, one afternoon I spent hours teaching her to roll over but she’s never been able to do it again 😛
We can communicate with each other even though we don’t speak the same language. She can seem to understand when I need a rest and will come a sit on my lap in the park despite other dogs being around. She has been a better friend to me than many of my own species. She may not have much of a choice but she is always pleased to see me when I come through the door. She kept me going. She’s kept me hungry to keep improving, after my operations I was longing to get up and get going so I could see Molly.
Having looked after Molly for 18 months, I met a lady from a dog walking company and, because of the wonderful experience Molly has given me, got a little job walking and dog sitting on the side too. I’ve looked after Labrador crosses, frenchies, terriers and bichons. I’ve gained so much experience in looking after animals and working with owners. Though, I will never feel the same way about the other dogs I look after, It’s built my confidence and extended my love of animals even further.
I’m writing this as I realised this week, I only have 2 days left looking after Molly before I go back to uni. Her lovely owner has already said I’m always welcome to come back in the holidays but having looked after her 4 days a week for so long it will be weird not to go round most days. I’ll miss the hilarious text messages I exchange with her owner mostly about her toilet habits 😛 I will miss her a lot. She’s my comfort and my activity. She’s my best friend. I hate to think where I would be if we had never have met. As Molly will have others looking after her, I am sure I will find other dogs to borrow in Norwich if I can fit them round my schedule. But Molly will always have a special place in my heart as the beautiful puppy (she’s never really grown up to me) who kept me going through the most difficult time in my life.
Love you Molly Moo x
A huge thank you goes to Borrow My Doggy for being able to connect animal lovers to lonely pets. I highly recommend signing up whether you are an owner or a borrower. It has changed my life, kept me happy, kept me sane, and kept me as strong and well as I can be. Dogs are so loving a can be a great stress reliever giving you exercise and comfort. So even is you aren’t in a place, which I, if I’m honest, am not, to have you own dog you can gain a lot from it. My mental health has definitely been so much better with Molly around. And for owners who aren’t always around, not only are you making your dog happier, and often much less naughty, with some company, but giving someone a wonderful opportunity. I will forever be grateful to Molly’s owner, Michelle, for letting me borrow her!
It’s been Pawsome! ❤
In this episode of Adventures with EDS I find out what happens when the adrenaline of sitting in a scary movie at work interacts with POTS, have several very bad migraine episodes with bloating and nausea and go on a day out to Colchester Zoo with Mike seeing loads of amazing animals including Zebras of course, both medical and real :P. I also take a trip to costco and show you my little haul and talk about Mike’s disappearing bag and head to southend for a night out with new friends.
If you liked this video please subscribe to my channel 🙂
Sorry it’s been so long since I’ve done a proper blog post! I’ve been so so busy the last couple of months I don’t think I’ve really stopped. And of course, when I’ve finally managed to stop, I’ve not been feeling too well. If you want to catch up on the things I’ve been up to I have been doing a weekly vlog called Adventures With EDS. I promise I will do some proper blog posts soon when I get some time which coincides with enough energy and focus to write. There’s one I’m planning at the moment all about my going back to uni with chronic illnesses wish list, so stay tuned for that. For now here are my most recent Adventures with EDS videos for you 🙂 Hope you enjoy them and I’d love it if you’d subscribe to my youtube channel.
Part of the Adventures with EDS series, this vlog lets you come on holiday with me on our first cruise. Join me and my boyfriend, Mike, as we set off on our first holiday for 3 years and sail to La Rochelle in France, Bilbao in Spain & St Peter Port in Guernsey on P&O ‘s Ventura. This holiday was a 21st Birthday gift from my Mum & Mike that I’ve been looking forward to since November! See me dealing with my POTS ( Postural Orthostatic Tachycardia Syndrome ) , EDS ( Ehlers Danlos Syndrome ), Migraine & Food intolerance ( Gluten free, Dairy free, Refined Sugar free, Caffeine & Alcohol Free ) plus face the heat as we find out just how good cruising is for someone with a disability and/or chronic illness. We play bingo, lounge around the pool, dress up for the formal nights, watch brilliant entertainment on the ship and eat, a lot! We wheel, sail and walk (hobble) around our various ports of call. You’ll get a tour of our little state room and see what there is to do on a cruise ship. Thanks for watching 🙂
If you liked this video please subscribe to my channel 🙂 It would mean so much to me 🙂
As my boyfriend said when he opened suitcase ‘It looks like a pharmacy in here’. In this video I show you all the things that I’ve packed for my short cruise holiday / vacation. I’m very excited but it’s my first holiday where my illnesses have really caused me problems so it’s also a little daunting. Hopefully you enjoy seeing what I’ve packed and are looking forward to my upcoming holiday vlog.