February this year 13 years on way back from 2013 marks the month my life changed forever. I’d had the flu from which I never seemed to have recovered from.
On top of my ongoing flu I was experiencing that February in 2013 I also had my first tonic-clonic seizure. Before February at first I was having like daydreaming moments but my head would feel really fuzzy and I’d be really confused afterwards. I now know these to be absence seizures. But once I’d had my first tonic-clonic seizure I was having different types of seizures multiple times a day.
Living undiagnosed
I plan to write a specific blogpost on this topic however living with undiagnosed symptoms was so difficult in so many different ways. I’d get so frustrated with myself and I’d blame myself over my symptoms and not understanding what was happening to me or why. It was also scary and bewildering when new symptoms developed or when my health would worsen. I didn’t know what to do for the best for myself. Like should I try and exercise more but then I was struggling with my mobility and was using a walking stick the right thing to do? Did I need more coffee, more sleep, less sleep, supplements if so which ones?!
I also developed medical trauma from having my seizures but also from the things I heard and saw in hospital especially when in A&E resus but also from experiencing medical gaslighting.
Doctors and nurses didn’t always treat me so well, physically and verbally and mentally. When I had seizure clusters they wouldn’t give me the medication I needed on my care plan. Then when my EEG’s showed my seizures weren’t epileptic some doctors and nurses assumed I was faking my seizures for attention, or drug seeking or I was mentally unwell among other things.
Diagnosis time
Getting a diagnosis finally in 2017 was such a relief. I saw a specialist neurologist who specialised in FND and he diagnosed me Functional Neurological Disorder, this is a problem with the brain and spinal cord not sending messages around the body properly causing a plethora of symptoms. He also picked up in the appointment that alongside my FND I also had a condition called M.E. a Neuro-immune disorder that has a variety of symptoms.
Finally after years of living with undiagnosed symptoms, not being believed, being diagnosed repeatedly by my GP with Post Viral Fatigue Syndrome and just being told rest would make me better and countless times going to my GP asking for help and referrals and for tests all to come back normal I had names to my symptoms I could finally say I have FND and M.E. However but more importantly I knew I could finally stop blaming and beating myself up because I knew nothing was my fault.
My neurologist in his physical exam also picked up signs of Ehlers-Danlos so he referred me to an EDS specialist rheumatologist. After a genetic test to rule out vascular EDS I was diagnosed with Hypermobile EDS. With that new diagnosis came things like signs it was missed when I was a child as EDS is hereditary so I was born with it. I also had some of the same thoughts as when I was diagnosed with FND and M.E. The EDS diagnosis did make sense why I so easily subluxed and dislocated my joints; this was one thing I always wondered when I had my seizures.
Post-diagnosis
It wasn’t easy however after diagnosis. I had to change my life a lot. I had to learn what triggered my seizures, and how to manage my symptoms better as well as how to pace myself. I also had to understand the conditions themselves.
With my EDS diagnosis I had to do physio but with M.E. I experienced exercise intolerance and it would worsen my symptoms so I had to learn to do my physio but in a careful way that didn’t upset my M.E. too much. It was a fine balance at first.
Also with my EDS diagnosis came appointments for being fitted for splints and I had to learn when to wear them and when not to.
Becoming members of charities to do with my various illnesses really helped me in the early stages. This is something I’d recommend doing to anyone newly diagnosed. You can access a lot of information sheets and other resources as well as helplines and communities with others with your illness. I also got a staying safe with seizures booklet from Epilepsy Action which really helped.
There was already a lot I safely wasn’t able to do because of my seizures like use a kettle, cook, use the stairs, go out alone or drive and so much more.
Life now
Fast forward 13 years and my health has worsened over the years. I’ve had to fight a lot to get the care I need both from the NHS and also adult social care.
My social care is now more-or-less sorted. I have two fabulous PAs, I just unfortunately have to use a care agency once a fortnight as there’s still a PA vacancy for then (the vacancy has been open 6 years but I remain hopeful).
I’ve been lucky to get the equipment I need without really asking. I have a profiling bed with hybrid airflow mattress; I also have a bath lift and I’m waiting for a ramp for my back garden. My housing association have also been really good at adapting my bungalow for me too.
Some of the things I safely couldn’t do I’m now finding ways to be able to do those things. Sometimes it’s because I have the support of my PAs, or my seizures are better managed now I’m on medication or because I’m more attuned to my triggers but also because I have more confidence. Like 5 years ago I wouldn’t have thought it possible for me to be able to live alone. Also more recently like a year ago I wouldn’t have thought it possible for me to go out alone but now I have my Batec I share my live location with my PA who is at my home and I’ll take off for a short ride.
My GTM wheelchair and my Batec especially have been the best things I’ve ever bought. Since getting my Batec it does my mental health wonders. I’m just hating all this horrible weather at the moment as I’m missing going out so I’m looking forward to Spring and Summer.
I’ve also discovered more adaptations, aids and disability gadgets that help me and give me more independence.
I’m still learning how to get pacing and activity management done properly. It really isn’t my strength and it’s something I really want to get better at.
It is hard to see how my health has worsened over the years; I think because it’s been gradual I haven’t noticed it until I compare myself to how I am year upon year. Sometimes I have crashes to varying degrees with my M.E. and I’ll deteriorate, (personally my FND doesn’t fluctuate my symptoms just remain the same), and then I’ll have periods where my health will stabilise but not with much significant improvement and then something will trigger another crash. Read about M.E. crashes here. My EDS has also had a lot of complications. Also both with my M.E. and EDS I’ve developed secondary conditions which I have to manage.
Grief
I still sometimes grieve for my old life. When I used to be able to dance and do yoga so well. Or travel on a train or do volunteer work. Part of me thinks about Uni and graduating but another part of me wasn’t happy at uni and I wish I’d done another course at a different university. I think I only went for the course I did was because it was an undergraduate masters and it seemed daft to turn that offer down at the time. Part of me thinks about the career I really wanted and my plans for further study for my dream cream as a therapist with children. Now though I’d be interested in also working as a therapist with people with disabilities; help them get their head being newly diagnosed, grief for their old life or to deal with medical trauma and other such related things.
Maybe one day I can return to some form of education but my focus at the moment is on just getting through each day and managing as best I can. It is difficult when you live in pain all the time and for me my health is so unpredictable and I have mini crashes and Post Exertion Malaise so easily. I need a lot of rest to manage my conditions.
Thoughts about disability
I’m proud to say I’m disabled now but it did take me a while to accept that. My disabilities and health conditions don’t define who I am but they’ve shaped me into who I am today and I’m I different person for it. I’d say I have more resilience and I have more gratitude. My health has also over time made me realise who matters in life and who my true friends are too. I’m proud to be part of the disabled and wheelchair community.
