Noemi's story

I am coming from an Eastern European country. I have a twin brother who lives back home in our country. I was born premature at the age of 5 months, caught pneumonia, and nearly died as a consequence. Because of this, I was born with a lot of abnormalities in my body but did carry on living even though I was always very ill. During this time, my brother was a great support for me (and still is!), as he guided and encouraged me every day not to give up on myself.

I have enjoyed doing any kind of sports when I was young. I am married through my church. I do enjoy still listening to relaxation and meditation music.

I have now been diagnosed with 3 types of neurological condition and a spinal condition.

As mentioned above, I was born with abnormalities on my cervical spine and upper thoracic spine as I suffer from scoliosis in these areas. I was born with spina bifida occulta as well which was recently diagnosed here in the UK and in my country a long time ago. I do have cervical spinal canal stenosis and spondylosis (arthritis in my neck).

I have plenty of symptoms, but the main one is pain, which really started at the age of 19. I have had a slipped disc on my lower back in 2017 and have kyphosis, which is extremely painful but also is causing stiffness in my neck and middle back ALL the time. I was also headbutted by someone that same year and it left me the next morning with a bruised eyelid the next morning.

Since then, I started to have intense headaches and a sudden slurred speech in 2020. I was therefore referred to TIA (Transient Ischaemic Attack) clinic but they couldn’t find anything. After that, I went to see a neurologist that same year who had diagnosed me with the Hemiplegic Migraine alongside dystonia too.

I then started collapsing to the point I was not able to walk, stand up and feed myself. Following that I was diagnosed with Functional Neurological Disorder and Cluster Headache in 2021. I had several collapsing episodes and ended up in A&E a lot after this. As the hemiplegic migraine is mimicking symptoms of a stroke, I have had lots of CT scans. All these conditions are causing me a lot of pain and discomfort in all over my body.

I can’t express in words how my life has changed.

It limits me a lot: I am not able to do what I was used to do when I was young. I often am not able to do my daily task as I need help. It has all flared up to the point I have developed depression, an anxiety problem and self-harming thoughts.

At the moment, I am not able to do any work. I often do not have any desire to live but just have to carry on for the sake of my family and friends.

In order to manage all the neurological conditions that are affecting me, I have to take different kind of medications such as strong painkillers, antidepressants and medications for the migraine condition. I have tried 5 or more medications for migraines now, and they have not helped. I have therefore decided to try and get Botox injections.

I am seeing all kinds of therapists or consultants for pain management, FND and hopefully for my complex spinal problem soon.

I also practice mindfulness movements with a physiotherapist.

I know I have no other option but to live with these conditions and have accepted this path. I have faith in myself and God and in other people I meet. I believe all these conditions have a reason to be there, and I am trying to become a stronger person in my faith and spirit with them.

Fortunately, I did not catch COVID, but the lockdown definitely affected my mental health. I started to feel more claustrophobic and it did also worsen my physical condition as I was not able to move around as I was used to before the COVID. I do think the loss of a family member in 2020 and the loneliness from the COVID’s lockdowns were the direct cause of my migraines.

I wish my family and friends would know about these conditions, how badly it can affect me and how I can have lots of bad days. They would definitely be more understandable towards me or whomever suffer with these conditions as a whole family if we were in this together. I wish everyone would be there for me when I need them to enlighten my days. Be aware of support around you is essential.

I would advise anyone who is living through this that they are not alone in this illness or difficulties as there is always a solution. You will get better as time goes on and you have to believe in your family’s and health care’s support. God, my brother, my husband and some friends were so inspirational to me through this journey.

Everything happens for a reason. Having an illness is not end of the world as it makes us stronger and helps us to get closer to God’s heart.