Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Ruthy's Story'

Yellow water lily

I’m Ruthy, twenty something business consultant, gamer and cosplay enthusiast! I live with my fiancé and two cats near London.

My main chronic issues are chronic fatigue, chronic pain and non epileptic seizures along with some MH aspects. It’s all a bit of a cycle, my fatigue makes my seizures worse which makes my pain worse which makes my fatigue worse!

I loved costume design and attending conventions, singing, swimming, reading, video games and cats before I was diagnosed. I still love most of these, and thankfully the cats aren’t affected by my seizures except to sit on my unconscious form (thanks cats!).

Ruthy and her fiance

I used to be a consultant who travelled to client sites but since my chronic health issues really picked up I have to work from home full time. This has caused a lot of issues with my job since consultants are supposed to be able to travel but I’m just about making it work.

I’d struggled with low energy all my life but when I was 17 I started collapsing everywhere with no warning. It took years for me to get a diagnosis and the doctors still don’t really know what it is! After the seizures came issues with fatigue, it was just that I couldn’t recover energy at first, then it developed into chronic fatigue and caused me massive issues at university. The chronic pain picked up in the last two years really (since apparently I needed something else haha!)

It took my doctors two years to diagnose my seizures and even longer for the chronic pain and chronic fatigue. I’ve felt like I was faking it, like I was mad sometimes, and often just when would we ever get anywhere, but it’s coming together now.

I avoid the internet like crazy for diagnosis. I think it’s dangerous to self diagnose, but when it became evident what I was having were seizures I looked at support groups for ideas. With the chronic pain and fatigue I knew some other people with similar issues so asked for advice, but always I take the issue to my GP and push from there.

When I have a flare with the seizures they’re multiple ones in a row and my head feels like I’ve been whacked with a brick and I have vision disturbances and migraines. With my chronic pain and fatigue my body feels so heavy, I have burning pain down my forearms and often can’t raise them. I struggle to sit up and am really prone to costochondritis. My back aches and I have so little energy standing up is often impossible.

During flare ups I feel boiling hot inside but freezing to touch. My body feels like lead and my arms burn like they’re in ice. My legs feel weak and can’t support me and my head is a painful fog.

Ruthy cosplaying

Generally a bad flare for me is a couple of days before it returns to the normal level of pain and fatigue I’m used to. I’ve had worse ones, especially if they’re triggered by a bad seizure or a cold which have lasted over a week and caused me long recovery times.

When flares are really bad, I simply have to not work, lie in bed and take codeine. I’m so lucky my partner is very helpful when I have them and if he’s around he’ll get me drinks and heat packs and make sure I’m taking it easy (something I’m awful at haha!).

My seizures are triggered by strobe lighting, heat, cold, extreme fatigue and stress. The stress is the hardest thing to avoid since life is full of it! My chronic pain and fatigue is unfortunately also triggered by cold, overdoing it even slightly physically or sometimes just getting overwhelmed.

I swear by biofreeze, best herbal role on for pain! That and my TENS machine are my main go-tos. Microwavable heat packs, specially long ones you can put round your neck are a total lifesaver. I take codeine and lamotrigine on prescription amongst others and use iron supplements, sea kelp and recently hemp oil to help.

To those struggling with non epileptic seizures or indeed seizures of any kind, don’t be afraid to look at life and think how to focus it around you. I felt horribly selfish when I was having to really think how did I feel- was I well enough to go out with my friends but if you don’t put your health first you’ll only make it worse. Keep something sugary on you and make sure you wear a medic alert so people don’t think you’re dying or on drugs (both are reactions I’ve had!). Another piece of advice is don’t let someone else tell you your health limitations. My university and GP told me I wasn’t well enough to be at university- I stuck it out, told them no way was I leaving and got my degree, an internship, and a graduate scheme. You Can still do things, being chronically ill isn’t the end.It can feel so much that chronic fatigue and pain rule your life but try to be as active as you can. It’s okay to have to take things slow and it’s okay to acknowledge that you have good and bad days but I’ve found it so important to make sure I’m still doing physical things so I don’t feel my life is purely ruled by illness. For example, I do pole dancing- the stretching and movements involved have been really good for my body and working out some of my stiffness and pain and light cardio helps me too.

Ruthy on a pole

The main impact really is how little I leave the house alone. I don’t feel safe by myself and since I work from home I can get very isolated. I try to keep social online and see friends at weekends so I don’t become too at one with the hermit life. My illnesses have often made me feel like a huge burden to people and like I just want to hide away but I hope they’ve also helped make me incredibly determined and pretty hard working.

Travelling solo- it’s just not safe for me anymore- I had so many dreams of going travelling by myself which have totally gone out the window. Now even going into town by myself can be really difficult. I also can’t drive due to my seizures and can’t use quite a lot of gym equipment etc as it can set me off.

When I first developed my seizures I had a couple of people who didn’t want to be associated with me because my having seizures was inconvenient for them. My mother too treated my illnesses as a thing I had decided to have rather than was suffering with and held them against me a lot. Fortunately, on the whole, my friends and partners have been extremely supportive with regards to my health and have been such a blessing for me. My fiancé understands it’s just a part of my life, not who I am and doesn’t treat me like less of a person for it- just understands there are things I need to do differently. My friends understand that travelling is hard and that sometimes I have to cancel last minute because I’m not well enough. For all of this, I’m massively thankful.

I spent so long feeling I was battling against something and being exhausted mentally from that feeling. I learnt to accept that things were a bit different for me and that I’d need to find a workaround for keeping doing things I needed and liked to do. I started blogging recently about my conditions and how I try to balance my life at which if nothing else has been therapeutic and I hope can show people you can still have a life with chronic illnesses and that they aren’t alone. There are so many wonderful people with illnesses like these who are so caring and the online support groups really are amazing.

I still hope my doctors might find a medication to stop the seizures and I hope so much that the chronic pain and fatigue might lessen in time. My GP is currently investigating me for fibromyalgia so maybe that’ll shed some light! I believe that although I find it beyond tiring I can keep working to find a balance in my life. I’m working to keep more physically fit this year because that helps me a lot mentally and physically so am down the gym when I’m well enough and practicing pole dancing and yoga at home. I’m learning that on days when I’m really bad it’s okay to not push myself, okay to be ill and okay to not be okay! I’m hoping to stay having a career, am planning my wedding and intending to travel with my fiancé in the future. It’ll be tough getting there, but it’s worth it :)

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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