Help Ash get his life back
Hello, my name is Ash. I am from Sheffield, England and have just turned 35. At age 20 I was diagnosed with POTS, a condition that affects the function of your autonomic nervous system, or the system that is in charge of all involuntary activity in your body such as heart rate, blood pressure, breathing, brain activity, etc. It is similar in its effect and impact to long covid. Since my diagnosis and treatment I have slowly gained my own sense of normalcy and happiness; whilst still being hard at times, I had reached a new equilibrium and had been stable for almost ten years.
And then seven months ago, inexplicably and overnight, my health began one of the most dramatic and terrifying declines I have ever experienced. It has been even worse than how I felt before I was first diagnosed with POTS. I went from being able to live to having no life at all, unable to leave my bed. It is a struggle to do even basic things, from simply sitting upright for five minutes to falling asleep. I have tried so desperately to get help, but due to the strain of Covid on the healthcare system it has been so hard to get appointments. I have had to wait months for even basic tests; while I wait, I have only become more and more ill.
The only thing close to a answer I have received is a diagnosis of ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome). I don’t know if I have always had ME/CFS alongside my POTS and it has gotten way worse in these last months, or if it is a new development. ME/CFS is such a misunderstood condition and those who suffer with it have been vilified in the press and abandoned by the medical industry. To get this diagnosis was was soul crushing to say the least.
I have been so insanely unwell these last seven months. Not ill on and off for seven months, but ill every moment of every day. It has taken everything from me, I no longer know who I am, I don’t see myself when I look in the mirror anymore. Last year, before this began I was probably the happiest I have ever been. I was (and am still) with the most lovely, kind, caring and beautiful person I had ever met and have had the honour of being her boyfriend. We had so many hopes for the future, marriage, a place of our own, children. All those dreams are gone now.. all that is left is this waking nightmare.
In my desperation to make money to pay for healthcare I have considered selling the few valuables I have in my possession; namely my self-built gaming PC, my new 3D printer I saved months for, and my hand-painted warhammer models. I really really don’t want to sell my models, I put my heart and soul into them and they mean so much to me but I have nothing else of value. It will crush me, but what else can I do? I have reached rock bottom, my health is all that matters now. It may be that I have to sell them anyway down the line but I am praying that won’t be so.
Any and all money I receive will go directly towards paying for diagnostic tests to try and find what exactly is wrong with me and to pay for treatment that could help. It would hopefully help me figure out why my body is failing me, and/or alleviate the debilitating fear that I experience every day. There is of course no guarantee that the tests will help, but what else am I to do? I can’t live like this. Health really does seem to be a rich man’s privilege and I had the misfortune of being born into a working class family on a rundown council estate. We have no savings, no valuables to sell.
Due to my chronic illness and this situation I am unable to work and I get £4000 a year to live on. This is all used solely to pay for food, rent and other basic living requirements. If I have any money left over after I have paid for my tests it will go to further medical care, or to other unavoidable living expenses. I will forever be grateful for any help given, even the smallest contribution will go so far towards finally finding some answers and getting my life that I so desperately miss back.
Thank you
Ash