How do you find medical help when you're willing to do everything and anything, never having given up, never complained, never said no to try or stick to anything, but no-one seems willing to help you and you don't know where to turn?
It started in 2006, a "normal" student in school, awakening one day, struggling to breath, in agony, barely able to crawl, vomiting bile. The doctors were at a loss. The weeks started to go by, the weight started to drop away, to the point of being weak and bedbound. No longer in school. Managing to get some tests, each came back negative, no answers, no explanations, frustration, fear, confusion, and a lack of clear support or care. Access to care a battle from the start. Appointments never booked, cancelled, no follow-ups, GPs refusing to dispense medications. Medications suggested and consultants immediately discharge, medications made it worse.
The weeks, months and ultimately years tick by, abandoned, no-one with the expertise, time or budget to help, you become the case that no NHS trust, clinic or consultant wants. The case that cannot be solved, a burden to their stats.
You spend hours at a time in the bathroom, being sick, diarrhoea, blacking out from the paint. You don't get any support financially from the government. You don't meet their criteria. Who can employ someone that is stuck in the bathroom all day. How do you support yourself. How do you live. Your conditions causes migraines, shortness of breath, pain throughout your body, clouded thinking, confusion, flu like fever, joint pain.
Every probiotic, every supplement, every diet, every exercise, hypnotherapy, acupuncture, yoga, you're tried it all. You stick to it rigorously.
How do you live, when you cannot even make it outside for a 15 minute walk without needing a bathroom. You haven't been on a vacation for decades. You have no friends, all but one of your family members, 75 years old are gone. You have no support network, no-one to advocate for you.
You've done all you can do to better yourself, but nothing makes it better.
No you're running out of time. Trying to earn a little money online here and there over the years as and when you can, but with costs spiralling, no regular income, having cared for your terminally ill family members around you and now left to battle it without any support, what are you to do? Having been burdened by these health issues and lost the best years of your life.
You don't heat your home. You don't buy a new phone every year. You don't drink, you don't smoke, you don't buy new clothes, you don't watch TV, you exist, you don't live. You exist in misery and without hope.
The couple of online pen friends you have tell you that you're the nicest person they ever come across and would do anything to help and support you, yet you seem destined to be trapped and imprisoned, both in your body and your home.
Twice I have been forced to move home because of others, first time because of an abusive neighbour, second time because of anti-social behaviour and the police being powerless. This cost me the last savings and financial wiggle room to try and attempt any treatments. Through no fault of my own. Without a calm stable home situation, the chances of recovery or hope are slim to none.
All you want is a small chance to not be in pain, to have even a few hours a day of being able to focus, pain free, to be out of the bathroom, to get some sort of work from home job, just to survive.
When you wake up each morning so tired for so long, your body exhausted, aged so far ahead of its time, dreading another day ahead, when you have SO much desire to want to live, to contribute, to be a part of society, to do good, you are left devastated.
The attempt is to try and get the best clinic available to have a full dedicated consultant that has the time to take full ownership and look at ALL symptoms from sleep, pain, digestion, neurological in the hopes to get answers. But this comes at a cost. Diagnostics for a single test can be £2000 alone. Each consultation £150 to £250. How do you afford this even with a full time job, let alone without one. Any help to have any semblance of a life is appreciated beyond imagination.