Monday 27 February 2023

10 years on

This February marks ten years since I became chronically ill.

Sure I've had health problems all my life, I grew up with an acute curvature of my lower spine (hyper lordosis) and had care for that as well as treatment for my mental health as a teenager and also my now diagnosed Ehlers-Danlos, a genetic hereditary condition was always there just never known about. However non of my health problems as a child including my mental health including anorexia which I was seriously ill with never really affected me and my life to the extent and in the same was as my health issues that I've been dealing with over the past ten years.

Over the past ten years I have lost so so much. Friends, academia, a future career, my dream career, my independence, volunteering, the ability to look after myself, my mobility, my freedom, dreams and plans and much much much more. I have grieved and I am still grieving for the life I have lost and I feel lost, like where is my place in this world? Thankfully I'm now just beginning to get some support from a psychologist at UCLH to help me re-find my purpose and what is meaningful to me so I can move forward in life.

How it all started...

 It started back in 2013 with a case of the flu which I never recovered from. After then I was tired a lot, I struggled to walk and ride my bike around campus and to places like the shops and to dance for as long as I used to be able to. I found it hard to take in what was said in lectures and seminars and to get essays typed up and to do my set reading even with all the support of my academic support worker. Then one day I had a seizure, and then after that I had more.

By this point it was February and my health was in pieces. It came to the point where I had to leave University where I was studying nursing and return home. I thought at the time that this would just be a temporary measure and I even reapplied to a University to return to my studies. I've always been academically driven and my only plan for my life was academics and my career. My drive was to eventually become a child psychotherapist. I didn't get back into University but they advised me to do some further study which I did but it took me longer to complete the course than usual and I didn't get the grade I wanted and what my tutor thought I'd get so I felt pretty low. I could have retaken the exam module but by this point there was no way I'd cope doing it with the time frame.

I'd gone to my GP several times about my overwhelming levels of exhaustion and other symptoms. Each time my GP would diagnose me with Post-Viral Fatigue Syndrome and I just needed to rest and I'll soon be feeling much better. However I never did yet I still kept being told the same information.

Then on the 4th July 2017 I finally had my long awaited for neurology appointment with Professor Edwards regarding my FND (Functional Neurological Disorder). Until this appointment I'd not been diagnosed with anything other that this Post-Viral Fatigue Syndrome. Professor Edwards specialises in FND and confirmed that I did have FND - a neurological disorder where the brain's messaging system doesn't work properly. For some people this can cause just one symptom or for others like me it can cause multiple. So that was my first solid diagnosis since 2013, four years on,

As well as Professor Edwards confirming my FND diagnosis he also said I had M.E. but little more was said about M.E. so I was left to go home and Google this diagnosis myself and work it all out alone as no further referral was made. Professor Edwards also picked up on my hypermobility and referred me to Dr Kazkaz, a rheumatologist who specialised in Ehlers-Danlos Syndrome over at UCLH.

I eventually saw Dr Kazkaz and after some tests including genetic testing I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and because of the secondary problems my EDS was having on different organs of my body Dr Kazkaz referred me to different specialties within UCLH as well as the Pain Management Centre. I've also seen consultants and other departments at my local hospital too.

I honestly see my health as a full time job and that is a blog post I plan to write about soon.

Over the years my health has declined but not in a linear way, it's been a gradual up and down process.

Back in October 2019 - March 2020 I was in a specialist unit for people with FND and M.E. (though they mainly focussed on my M.E.) Some of the treatment health like learning activity management and developing a daily plan as well as being around the other girls with had M.E. and FND too but other aspects of my time there didn't help like Graded Exercise Therapy so soon after coming home my M.E. started to worsen.

Then in April last year I had surgery and that really crashed and set-back my M.E. and I haven't really recovered since then. However the surgery was a success.

Where I'm at now...

I still feel grief for the life I should have had and have lost but each day I try to find a focus for the day such as what I'm going to do and I just take each day at a time; each activity at a time as my health can change so rapidly. 

It's taken me a long time but I now feel like I've found 'my tribe'. My only way of socialising is on Instagram and through letter writing to friends and pen pals and I now feel since last year that I have a good network of people around me that are good and positive as sometimes the chronic illness community can be a competitive and unhelpful place.

I'm also now looking to find my own home and I can't wait to move out and have my own space to design and put my stamp on. I've already got a growing Pinterest board with a section for each room planning out my new home!

I have a good network of support from an array of different professionals from doctors, nurses, housing support workers, other professionals, Personal Assistants, family and friends.

So though the past ten years has been tough to say the least I don't regret becoming ill. It's made me a stronger and more resilient and grateful person and the person I am today.

Tuesday 14 February 2023

Guest post by Rebecca writing about FND

“About 1 month ago I was diagnosed with FND, Functional Neurological Disorder. My initial reaction was relief and empowerment, finally, after 2 years of unexplained symptoms I was given a name for thief that had stolen my life away. However, I soon discovered that the letters ‘FND’ are accompanied by contradictions, at times prejudice and frequent misunderstandings. In short, the diagnosis felt somewhat like being thrown a fantastic gift, grasping it for just a brief moment before watching it slip through my fingers and smash on the floor. 

Certainly, the same emotional cycle of optimism, hesitation, disappointment and embarrassment followed. Optimism that a diagnosis would lead to answers, being heard and understood. Hesitation followed, caused by confused and contradictory explanations. I felt disappointment in the reaction of health professionals and lack of support provision and finally embarrassed by the assumptions, invasive questions and shocking stigma attached to the diagnosis. 

Both a blessing and a curse, FND was a common disorder that no one had heard of, an enigma of disability, real, but “not real”. I quickly discovered, my journey hereafter was going to be an unusual struggle, finding health, respect and rationality again. 

Thankfully, I also discovered I wasn’t completely alone! A few super strong and brave people were not only battling life with FND, but also battling the misinformation out there. Sharing knowledge and cultivating respect for people with FND. These voices, although few, provided clarity and confidence. Pulling others, like me, out of the ambiguity and creating a place of solidarity for them.

My hope, arriving in this strange new place, is that more people with FND will be empowered to voice their experiences, to shake off the offensive outdated language used around FND, and to deepen empathy within their communities based on knowledge and understanding. It’s time for FND and those suffering, to be understood, accepted without bias and listened to! Fighting Negative Discrimination!”

What is FND?

FND is a problem to do with the brain’s messaging system. It’s a bit like when you’re in a car an you go to press the break pedal but insteadc the indicators come on. This is what happens in our brain; it tries to do one thing but the messages get tangled up and misfire resulting in a wide range of different symptoms.

  • For more information about what is FND and links to further resources visit my page on FND here