A couple reveal how a ‘mystery illness’ is causing a strain on their long-distance relationship.
Any hopes they previously had of being together are buckling, as Ashley Timms is now unable leave the house.
The 35-year-old, from Sheffield, suffers from a lesser-known illness called POTS.
It is otherwise known as postural orthostatic tachycardia syndrome, and Ashley claims it’s made his life a ‘waking nightmare.’
For those not clued-up, the human circulatory system is designed to counteract gravity, which pulls some of our blood down to our stomach and extremities while we’re sitting or standing. So, blood vessels work to maintain blood flow to the heart and brain automatically, ensuring that no area is over or under supplied.
However, Ashley suffers from an abnormal increase in heart rate, as his nervous system is unable to automatically prevent a drop in blood supply to his vital organs.
This means he experiences a range of symptoms, including extreme fatigue, fast and slow heart rate – which often leaves him breathless or feeling faint plus with nausea and severe insomnia.
Because of his condition, Ashely was convinced he would never find ‘the one.’
However, two years ago he met 25-year-old Sarah.
‘She fell into my life by accident one day and changed everything,’ Ashley told NeedToKnow.Online.
‘We met online during the initial Covid lockdown and it was an immediate connection because we shared so much in common – similar interests, passions and beliefs.
‘She was perfect in every way to me and is the most genuine, loving person I have ever met.
‘We quickly fell very much in love and I have never felt this level of closeness [before] – I’ve found the person who I was meant to be with and who I want to spend the rest of my life with.
‘However, she lives across the world in New York City. We were both looking forward to the future and the day we could finally be together forever.
‘Sadly, my recent health downward turn has changed our relationship into something different, as my illness consumes all of our thoughts and time, where we can’t enjoy the things we used to do together.’
Despite everything, Sarah hopes to move to the UK one day and to live with him.
She says the relationship is ‘strong,’ but the extremes of Ashley’s illness have been hard for Sarah to watch.
‘It is incredibly heartbreaking to watch the person you love most slowly lose everything they have; all of their identity, and all of their hope,’ she says.
‘I have had to watch from the other side of the world as the person I want to marry suffers physically, mentally, and emotionally.
‘It makes it even worse that there is not much I can do to help him other than make hollow promises that everything will be ok.
‘I struggle with anxiety myself, and this has increased exponentially as we have dealt with this.’
Before falling ill, Ashley was a healthy teenager who was looking forward to carving out a future for himself.
At 20 years old, he began feeling ill and after two years of back and forth with doctors, he received a diagnosis.
Due to various treatments and medications, such as bisoprolol and fludrocortisone, he was able to reach a level of stabilisation which lasted for 13 years until December 2021.
But his health started to decline dramatically late last year.
Ashley recalls: ‘I have no idea why this happened, but I awoke from a deep sleep and sat bolt upright with a painful squeezing in my chest.
‘My symptoms came about all at once and not a single day has passed where I have not felt something happening in my body.
‘I have extreme fatigue that doesn’t dissipate no matter how much I rest, decreased ability to be upright, a fast heart rate upon standing which is crippling and leaves me breathless, as well as a slow heart rate which makes me feel faint.
‘[I also suffer] from heart palpitations and sometimes, it feels like my heart is struggling to beat properly, as well as brain fog that causes difficulty with forming thoughts and speaking.
‘My head often feels empty, as if a blanket has been thrown over my mind or that I am drunk – this greatly impacts my quality of life and my relationships as I get tired from conversations.
‘I feel dizzy, have vertigo, chest pain, muscle aches, swollen lymph nodes, nausea which has impacted my appetite and weight, as well as grey out in my vision and derealisation.
‘Ever since that day, it seems like my whole body has malfunctioned and I don’t believe this has all been caused by POTS.’
Currently, Ashley is on the hunt for answers – but he feels he’s being abandoned and left to fend for himself.
‘I’ve tried to get help and this has been intermittent, but the doctors have seemed to not do much or take me seriously,’ he adds.
‘The tests I’ve received so far, after much pushing, is a 24-hour monitor, a 12-hour blood pressure check, various blood tests and a chest X-ray.
‘I haven’t been referred to any specialists and the only close answer I’ve been given, is that my doctor believes I might have myalgic encephalomyelitis, which is otherwise known as chronic fatigue syndrome.
‘The only way I can keep my symptoms from getting worse is by literally doing nothing.
‘Any time I have pushed myself, it has led to a huge crash that can last weeks. In order to keep going, I have had to give up my life and all sense of identity.
‘I have very little that brings me any real relief or joy, as feeling unwell has taken it all from me.’
His illness is now leading him to feel like he is ‘drifting away’ from friends and family, and he is unable to come out of his room or use the computer to speak with friends online like he used to.
‘Because I spend all of my time ill, every aspect of my life has been negatively affected – my relationships, hobbies, hopes and dreams of the future,’ he continues.
‘I spend my time isolated and alone in a dark room, not knowing what’s wrong with me or if this will all end.
‘As the months have gone by with the immensity of my condition, with no hope that anything is going to change, my mental health has taken a big hit.
‘I have not found any solace in the hope that I might be able to get help, because of the inactions of doctors and the feeling that I am not being taken seriously.
‘I have lost so much already and cannot afford to wait another eight months or more to get the answers or treatment that I need.
‘My hope is that if I can pay for private testing, I will be able to finally get an answer to what’s wrong with me – but I don’t have the privilege to be able to afford this.’
He is now urging others with chronic illnesses to fight for a diagnosis.
Ashley adds: ‘To any person suffering from a long term chronic or invisible illnesses, my advice would be to advocate for yourself as best you can.
‘There are also non-profit organisations that specialise in advocacy that can really help.
‘You have to be very clear and assertive in order to get your point across well to doctors and this can be difficult.
‘This is why it’s so important to surround yourself with people who care and support you.
‘I want to reclaim my life, my hopes and dreams – and mostly importantly, to have a future with my girlfriend.’
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