Thank you for taking the time to read through this fundraising page, for this alone we are very grateful.
You may be aware of Rachel's health journey but for those of you who are not here is a the most brief background we could achieve!
When Rachel was 16 years old she fell ill with a viral infection called labyrinthitis which inflames the inner ear or the nerves connecting the inner ear to the brain. This inflammation disrupts the transmission of sensory information from the ear to the brain. This causes very acute and distressing symptoms such as vertigo (room spinning), dizziness, difficulties with balance and vision, and loss of hearing.
After a period of gradual recovery that may last several weeks or months, the majority of sufferers are completely free of symptoms.
Less commonly and in Rachel's case, the virus may damage the vestibular nerves and cause inner ear dysfunction which results in chronic dizziness, balance and vertigo symptoms, as well as fatigue and cognitive symptoms such as difficulty concentrating or thinking.
For two years without a clear diagnosis Rachel struggled to understand or describe her symptoms to others. Every day activities became increasingly fatiguing and uncomfortable; even the most simple of tasks and movements such as turning her head or standing with her eyes closed.
As a result of the virus Rachel also started to experience symptoms of tachycardia and a feeling of lightheadness or fainting upon standing. This was later diagnosed as POTS, a syndrome that is an abnormality of the functioning of the autonomic nervous system. When a healthy person stands up, blood vessels contract and the heart rate increases slightly to maintain blood supply to the heart and brain. For someone living with POTS this automatic adjustment to upright posture is not working correctly, resulting in an excessive rise in heart rate, increased norepinephrine in the blood and altered blood flow to the brain.
Symptoms for Rachel are debilitating disabling and can vary from mild to severe, from day to day.
After further invesitgation, Rachel was also found to be experiencing Migraine Associated Vertigo. This is a migraine condition, which causes the typical symptoms of migraine as well as vestibular dysfunction. For Rachel this causes symptoms such as spontaenous vertigo attacks often accompanied by nausea and vomiting, motion intolerance with respect to the head and eyes, diminished eye focus with photosensitivity, sound sensitivity and tinnitus, balance loss and ataxia, neck pain and spasm, spacial disorientation, poor proprioception and anxiety/panic.
In 2016 the severity of Rachel's conditions and concequential symptoms were as such that she was completely bedbound, unable to sit up in bed or to eat. This lead to a period of three months in Yeovil hospital.
It was here that not only were Rachel's physical health issues looked at more thoroughly but the emotional repurcussions of Rachel's health problems were finally addressed. Rachel was subsequently diagnosed with severe PTSD as a result of the experiences over the past five years.
Since then Rachel has worked with incredible determination to regain her mobility and basic functions with the amazing and unfaultering support of the local NHS phsycial and mental health rehabilitation teams and continues to make exceptional progress.
Where are we today?
While I am still affected by ongoing health issues, with my wonderful and supportive fiancé Adam, we are moving into our own home with our beloved cat, Bluebell.
Understandably, this is such a monumental milestone in our journey and is a happy and exciting time.
Together we found a house in a little village, in Dorset, within reach of Adam's work and my healthcare.
In preparation for purchasing a house we were very careful to check that we would be able to receive the necessary equipment integral to allowing me to move in and were assured that I would qualify for adaptations to the house through social services; including the installation of a stairlift.
Unfortunately, a month and a half into the purchase, we have been made aware that the council does not and did not have adaquate funding to provide a stairlift. This is the most crucial aid, as without it, due to the restrictions of my mobility, I will be unable to access the first floor level of the house which includes the bathroom and bedroom. There is not a downstairs toilet.
If we had the knowledge of this information prior to purchasing the property it would have greatly impacted on our decision to move into a house.
While we are able to fund the other aids that are required for me to move in and live more independently, we do not have the financial ability to purchase and install a stairlift.
It is with great difficulty that we are sharing such a personal story and asking if you could help in any way, however small.
Donations, sharing this page and our story or any ideas for fundraising would be hugely appreciated.
Our heartfelt thanks to you all,
Rachel & Adam x
- Helen Burlinson
- Deirdre Kelly
- Jeannie & Richard Parry
- Mafalda Martins
- Claire & Chris Bell