Followers

The one where I talk about my Medical Journey

People are so sweet and lovely. When I am on social media people ask what disabilities I have so I thought I would explain. I don’t want sympathy, or anything like that. I just want to inform people and answer the many requests I have had. I want people to see me as Ruth, writer and creator of the Rolling Twenties, possible alien and amazing blogger (not sure about the last bit!)
So let’s go on this journey down the rabbit hole together...

Epilepsy (proud lifetime member of the floor-floppers club)
I’ve had epilepsy since a child. It used to affect my learning abilities. When I was six years old I was seen by an Educational Psychologist who said to my Mum “Mrs S your daughter is beautiful, she has nothing between her ears, and will get through life with her looks.” This was the 90s though! 
My Mum was appalled as she is an ex-teacher and believes “that every child has a talent, and every child has a chance.” Luckily my Mum believed in me and I proved that Educational Psychologist wrong. 
I got eleven GCSE’s, A-C, four A levels A-C  and a Degree in Education.
So, my dear Educational Psychologist wherever you are, thank you for saying what you did, because I may have had to work hard, but I achieved. I’m thoroughly happy to prove you wrong. 
Going back to the Epilepsy. Before I have a seizure, I get a warning sign, which is called an aura, of a metallic taste in my mouth and ringing in my ears. I have always had seizures of some kind which generally fall into two categories:
Absences -  I end up staring into space, and losing tracking of time and where and I am.
Grand Mal - I go completely out and I have no idea what happens Apparently these are the ones where I convulse and spasm badly, which makes sense because, when I wake up, I feel like I have been kicked by multiple horses on polo derby day! 
The seizures usually last 5-10 minutes, apart from one, which I will write about later. 

The Mystery Nervous System Disorder
I have lost most of the use of my left leg. I can’t feel it and I have very limited movement left in it. I guess it doesn’t help that I have a benign tumour on my hip! My Spine is damaged in several areas, with bulging disks and nerve damage. I am starting to lose the use of my left arm. My left eye I can’t see out of clearly and now I can only seen blurs of colours. 
Plus strangely, I get tingly feelings in my limbs, odd shooting pains and weird spasms. If I was a computer I would suggest turning me off and on again. 
Oh and how could I forget I have bi-lateral bursitis in both my hips. At least my right leg works... kind of... sort of... *Clunk. Clunk. Clunkkk*
The consultants cannot agree if it’s MS or not. I think this is their way of saying they don’t have a clue. 

Pain and (Im)Mobility
I have extreme pain in my spine, shooting up and down, plus because my right leg does all the work, that causes me tremendous pain. To get around I use crutches or a rollator and walking stick.  My muscles don’t have a clue what to do and randomly ache. It really is a pain in the neck! I use this rollator and it really has been a lifesaver. 

The Bizarre Heart Condition
Through my blog you have seen that I have been in and out of hospital with my heart. When I was a teenager I had a reveal device fitted which monitored my heart over an extended period of time, and I also terrified the surgeon! You can read this sordid tale here. The reveal device showed some devastating news, resulting in me having surgery when I was nearly 22 years old. Then I managed to have a heart attack during the surgery (typical Ruth) which I will tell you about in another post. After the surgery I was diagnosed with Wolff-Parkinson-White Syndrome. WPW is where the heart has two circuits where there should only be one, and the circuits misfire causing arrhythmia. Bad news for me, during the operation to fix this, only part of the second circuit was ablated. So I have one and a half circuits! The good news is I am like Doctor Who! The bad news is I am at risk of future heart attacks. Gareth often says I should see an electrician instead of my cardiologist next time, might do me more good! 

The out-of-this-world Auto-immune disease
I have an auto-immune disease and, all throughout 2017, I had constant infections. After ten lots of blood tests, it showed that the make up of my blood was odd. All my lymphocytes and other bug fighting things were through the roof. The consultant said in front of my Mum and partner, “Ruth I am sorry but this is a medical enigma, I have never seen anything like this. This is beyond medical science. Are you sure you're not an alien?” Well I love being a Science project, as long as they don't cart me away to Area 51! I asked which auto-immune disease it is and he responded with “Ruth, there is no name for it, but this is an auto-immune disease and I am so sorry.” The consultant has put me on a prophylactic dose of antibiotics. Plus various vitamins including calcium and iron. The best way to describe my immune system is like the American military. It will use a 2000lb guided missile to destroy a 20 year old motorbike. 

The suffocating Traumatic Brain Injury
Earlier this year I had an Epileptic Seizure that lasted twenty-five minutes, during which I learned the importance of breathing! When I came round, my consultant revealed I had been left with a Traumatic Brain Injury, due to a lack of oxygen during the seizure. It’s left me with short term memory issues such as an inability to concentrate, my moods can be up and down, I am still relearning every day tasks, my motor skills are useless and I am now known as Miss Dropsy. I have zero spacial awareness! It’s also affected my general strength. Looks like another nail in the coffin of my dream of being an ballerina! 

I am fully prepared for what lies ahead. I know I could end up in a wheel chair for good, at the moment I am using it intermittently. I am fully prepared to lose the use of the left side of my body. This is my life, and I just live with it. I do a lot of self care which I will write about in future posts. I attend physiotherapy, various consultants, my primary care GP and nurse appointments regularly. 
I am on various tablets for my epilepsy, pain, heart condition and auto immune system disorder. In all I am on fifteen different medications, which adds up to me taking forty tablets a day. This is my life. I love adventures, I love my family, I love my dogs, I just love to live. Yes, I may have disabilities but that is part of life, and I will be damned if I give up. I will live. I will write on. 

My dream is to write a book, or write articles for newspapers. I hope one day that will happen. 

I am Ruth. I enjoy reading, travelling, socialising, drawing, walking (well with my rollator), exercising, music, puzzles (especially hard ones, like these awesome sudoku books!) and adventures. I dislike Baked beans, and tinned sweet corn! I love Halloween, Fireworks and Christmas. I love the colour Purple. I love Unicorns (Note from editor/chief tea maker: she REALLY LOVES UNICORNS! I can’t move in the house for them sometimes!) and Rainbows and Disney.
My favourite TV programmes are Great British Bake Off and Strictly Come Dancing.
My guilty pleasures are watching WWE and Police programmes. Oh and Jeremy Kyle.
My dream is to travel all away around the world.

So there you go, I am just like all of you, just my body has a few twists and turns! 


I hope you know more about me! 

My posts sometimes contain affiliate links. These are links to products which I like, and if you choose to purchase them I receive a small commission at no extra cost to yourself.

Comments

Jella said…
You're such a brave person for opening up honestly about your issues. It's very hard for me to talk about personal things. I know I don't know you that well (yet) but you seem like a fighter who somehow managed to keep her sense of humor through incredibly through times. I hope the treatments are helping and will be working out for you!
Awwww thank you so so very much for your kind comment Jella. ❤️ It was hard, but I thought it would help some people. ♥️ You are brave for admitting you find it hard to open up. ♥️ Thank you so much. I will keep fighting. ♥️ I am glad you like my sense of humour! ❤️ The treatments are working, but the tablets have to be reviewed every 3 months! Xxx
Wow - I’m so impressed with your bravery and honesty. Thank you for sharing such a personal article with all of us xxx
It’s funny to find someone with so many of the same conditions but for different reasons-we’ve talked about some of them. I’m also in a wheelchair but bc of my back.
I think you are strong and have a very positive attitude and those two things really help to make for a great life!
Keep working on your writing and when you find the right inspiration you will write your book, I know it!
Wow, aww thank you for your kind comment Sarah! ♥️ Xxx

Awww Cynthia, thank you so very much for your sweet comment. πŸ’œ Wow, we do have a lot of the same conditions. I am sorry about your back. I hope the hospital can help you. Thank you so much, I will keep writing and find my inspiration. 😊♥️ Xxxx
Elysia said…
You’re so brave! Thank you for sharing this! Its amazing to see you smash your goals- I can just tell that you’ll keep on breaking the limits and smashing it even more πŸ’—πŸ’—
You are extremely brave, especially for opening up about this. Im sure many are inspired.

Xx
Val
www.countingdayswithval.com
simonGPman said…
What a really good article. My mum had Petit Mal, I recognised some of your symptoms, the same as she had.
You should write that book! What’ll it be on? Make it all about YOU, your life, your humour and your plans. Maybe in like a one year diary format.

I keep a short daily diary, just to make note of the funny things my young kids say/do!
Aww thank you so much for your kind comment Elysia. πŸ’œπŸ’œI will try to keep smashing my goals. 😊🌸 xxx

Aww thank you for your sweet comment Val. πŸ’œπŸ’œ I hope I have inspired some people. 😊🌸 xxx

Aww thank you Simon for your kind comment. I am sorry to hear about your Mum. I never thought about writing about my story, but my partner said, if I write over 80 articles, he may try and turn them into a book! I do a diary called “one line a day.” I am thinking of starting a longer diary. Aww that is so cute, you should release a book, about the funny things your kids do! 😊
notesatdusk said…
I love your determination! I really hope you get to write that book one day, your post was so informative and I genuinely laughed out loud at the way you were describing everything, oh and your doctor thinking you're an alien haha! You have such a fantastic outlook on life and a beautiful way with words, can't wait to read and learn more! :) xxx
Awww thank you for your very kind comment notesatdusk.πŸ’œπŸ’œ I will hopefully write the book one day. I am so glad the post was informative and it made you laugh. 😊 Yeah, I always seem to get that line off doctors, I must resemble ET or something! Haha! Thank you so much for your sweet and kind comment! 😊🌸xxxx
Leslie said…
I love that with everything going on you have a great outlook. I think you should write a book, what’s it going to be about? Reading your story, you truely are an inspiration! Have you spoke at any conferences?
Andrea said…
Ruth you are very brave to share so much of your journey with others like this. I can relate on some levels although I do not have as many medical issues myself I do have a heart condition requiring a pacemaker. Living just with that can be a challenge in itself. I admire you!
Aww thank you Leslie for your kind comment. πŸ’œπŸ’œ I would love to speak at conferences, but I don’t know who to talk to, to talk at a conference. I am not sure what my book would be about, perhaps my life? My partner suggested I should write about my life, but I don’t know if people would want to read? I am going to have a serious think about what I write in a book. 😊 xxx

Aww thank you Andrea for your sweet comment. πŸ’œπŸ’œ Wow, a pacemaker is a lot to deal with. You are very brave! I admire that you are battling on with a pacemaker. Thank you for your kind comment. Xxx
The Frozen Mind said…
You are one tough cookie that is for sure! I am going to be traveling soon and I am going to save some of your blog for some offline reading. I can't wait to read more about your story!
Aww thank you Frozen Mind for your kind comment. ❤️❤️ I hope you enjoy my articles whilst you are on your travels. 😊🌸 xxx
Unknown said…
You're so incredibly brave for opening up about your conditions - I've only ever spoken about a few of mine and it was incredibly difficult. I'm sure you're going to inspire many people to be open about their illnesses and possibly reach out.
We have so many things in common - purple is my favourite colour too! Unicorns are awesome. And I'm obsessed with GBBO!
And you should definitely write that book you dream of.
Thank you for sharing this post - can't wait to read more, from your newest subscriber! πŸ’œ
Aww thank you so much for the kind comment. πŸ’œπŸ’œ Wow thank you for saying this, I hope I inspire people to open up about their illnesses. Yay! I am so happy we have lots in common! πŸ˜€ I will hopefully write the book one day.😊 Yay! Thank you for subscribing! I look forward to you reading more of my blogs. πŸ˜€πŸ’œπŸ’œ
Taryn X said…
You have been through so much. Thank you for being so honest about your life.
Thank you Taryn X for your kind comment. πŸ’œπŸ’œ I thought I would be honest, as I want people to know me. 😊🌸xxx
Sheryl said…
Heh I dislike baked beans and sweet corn, too! ;) Thank you for sharing your experiences, even though they sound awful :( My epilepsy isn't as bad as yours, so it was insightful to hear from another experienced patient. 25 minutes sounds really bad, and I'm so sorry it caused TBI :( I'm currently having pretty annoying brain fog symptoms and nerve tingling stuff but nobody knows why either...my neuro doesn't think it's the epilepsy/SjΓΆgren's but I think it is. Anyway thanks once again, this was a helpful read for me :) Sending hugs.
AimΓ©e said…
I'm so glad to have met you. And I'm glad you're not a computer as I don't want to turn you off and restart you - you're fantastic now and always will be. Things are sent to try us and you've certainly had your share of those, but your positivity and courage shines through in posts like this. Keep sharing and keep on keeping on - you are fabulous x
Aww thank you for your kind comment AimΓ©e. ♥️♥️It means so much to me that you think I am fantastic! You are right, things are sent to test us, but I will keep positive and pushing on. πŸ˜€ I promise to keep sharing and keep going. 😘 Thamk you so much for your sweet comment! 😘❤️Xxx
Bikram Nath said…
Well, I will admit it. I have never seen someone struggling so much throughout their life and after knowing your issues I strongly believe that you are a brave fighter who never give up so easily. And talking about humor, you have more than mine. Wish you all the strengths and happiness that you deserve. I'm glad to know you. You are an amazing writer too Ruth. Hope your dreams come true.
Wow! Thank you for the kind comment Bikram! It means a lot to me. I try and put humour into my writing, Thank you for your kindness, and I wish you all the best. Aww I am so happy to know you! Thank you for your kind words! 😊🌸xxx
Ruth, I love this post, love your writing, love your strength, sense of adventure, fabulous sense of humor, love you! Keep writing girl! You have so much to share with this world. There are so many people out there who need to hear from you, myself included. Though each day is a new challenge, I hope our belief in you and your talents will lift you up when you need it most. Keep calm and SPARKLE on!! :-)
Thank you for your very kind comment help Momma sparkle! πŸ’œπŸ’œ I will carry on, especially when there are amazing people like you out there! ♥️ Xxxx
Yvonne Wabai said…
Wow. That's a lot to live with, but you're strong and you've made it this far and I'm confident you'll achieve so much more than you have already. As someone who is also chronically ill, I understand how it feels like. It sucks. But you learn from it and conquer the odds. I don't like that I have to deal with so much more than my friends, but hey, it's the hand I've been dealt. *shrug* It feels great to meet another blogger with chronic illness. And yes, you're so much more than your illnesses. I totally get the part about wanting to be seen as just Ruth.

Randomly Creative

Most Read Posts

Popular Posts