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5. COUNTING THE BLESSINGS OF LIFE

"Counting the blessings in life" digital paining in part with OpenAI API - Dysautonomia Today

Ellen’s diagnosis came after twenty years of trying to find a cure to what appeared to be an unforgiving illness. The feeling that came over her when she finally discovered that her condition had a name was akin to experiencing the eye of the storm after several days of turbulence. She knew peace like never before.

Ellen started her battle with PoTS at the young age of 17 years in 1993. It was a prime time of life; the fun period of being a normal teen. Unfortunately, she could not savor those times because that was when PoTS reared its ugly head. She was just recovering from a bout of chickenpox when she started having recurrent fainting episodes and other debilitating symptoms. Naturally, it was easy at first to assume that the weakness was a result of her convalescence state. However, it became apparent that something else must be involved when it became persistent, and she started having blackouts.

Ellen visited the hospital where she got diagnosed with Myalgic Encephalomyelitis (M.E), also known as chronic fatigue. She had no idea that there was a misdiagnosis. Despite her dominant symptoms not matching those of classic M.E, she got tagged as a patient of M.E six months after her symptoms started. Having this diagnosis was more of a challenge than a blessing for Ellen. It blocked several other investigations that should have been conducted. Whatever the medics did afterward was short-lived; no one bothered with going deep into the investigation again.

Eventually, they rounded her case off as anxiety. Although aware that she had developed worrying as a result of the nature of the symptoms, the anxiety diagnosis became a barrier to getting further investigation. With this, Ellen hit a brick wall for a long time.

However, seventeen years later in 2010, she visited a GP for a routine appointment. After studying her case notes for a while, the GP frowned and asked her if she had been diagnosed with anything else. According to the GP, although some of her symptoms such as dizziness, fatigue, and joint pain, among others aligned with M.E, her prominent ones were not. Fainting and the sensation of constant unsteadiness when she was not on a horizontal surface stood out from the rest; they had nothing to do with M.E.

As a result, Ellen actively pursued getting a diagnosis again. Apparently, all she thought she knew had been false. It was a frustrating period. Two years of thorough investigation followed. During one of such searches, she found a cardiologist at Papworth hospital and an online support group that finally helped her to get the proper diagnosis.

In retrospect, PoTS took away many things from Ellen. It struck at a time when teenagers’ fun started. She missed out on socializing, clubbing, picnics, and parties. For some people, that was enough to change their outlook on life forever. Although it was not easy, Ellen took the changes that came with her life in stride. She was not one to engage in a pity party. Instead, she built her life around her condition. For everything she did, she made sure that she had provision for PoTs.

Of course, Ellen had taken different approaches to being ill over the years. At first, she struggled with not giving up. But Ellen soon realized that making necessary adaptations did not equate with giving up. Her modifications included having grab-rails in all her rooms and knee pads to help her mobility from one room to another. Some days were so bad that she had to crawl from one place to another. Once that happened, the kneeler came to her rescue. Ellen had a kneeler for tasks like cleaning her teeth. She could rest on them as the body demanded.

One of the most difficult decisions she had to make was using something that appeared as retrogression and failure to her. Ellen never planned that her life would turn out the way did. So, accepting and using the wheelchair meant that she had come to terms with the new way of life. She could not stay with that.

However, she had no choice but to accept it after being ill for over a decade. Then, she wished she had collected it sooner. All her fears about it were baseless because the wheelchair made coping with PoTS easier for her. With additional adaptations in place, Ellen found an excellent use for her time.

Right from the house, she began her freelance cartoonist career. Although she originally intended it to be a source of income, she finally found herself falling in love with it. She developed a genuine passion for it, regardless of it not being the career she was studying hard towards before becoming ill.

Getting her PoTS diagnosis in black and white had a massive impact on Ellen, which went beyond the apparent hope for improvement. Seeing the graphs from the tests had an oddly reassuring tune to them. Finally, she could see for herself and learn the processes and mechanisms of what was happening to her. The days of merely experiencing all the signs and symptoms, trying to make others understand, and becoming dejected as a result of others’ inability to see things her way disappeared.

Although there were still some terrifying moments afterward, the ability to understand PoTS has taken a chunk of the fear and isolation away. The cloak of misery PoTs had over Ellen disappeared, and she started enjoying some sort of freedom. For starters, the doctor placed her on some vasoconstrictor medication. Then, she was trained on how best to manage the symptoms as they would always be there.

Does Ellen miss the kind of life she would have had without PoTS? Of course, she does, and she sometimes reflected on how it would have turned out to be. Occasionally, she thought about things like driving, socializing with others on special outings, or having children. But those moments never lasted more than brief moments. Ellen recognized the smaller blessings that made her worth living and peculiar. She got married to her soulmate, whom she met online in an M.E support group.

They had what many people would term an unusual but quick wedding. Sitting on the floor, led by an open-minded registrar, with only a handful of understanding and loving family and good friends, they got married. Now, she has a wonderful job that she absolutely loves, a close family, a precious stepdaughter, the best friends ever despite never having met most of them in person, and an incredibly funny dog who serves as a constant inspiration for her cartoons. Indeed, her life was blessed, but she only got to know how blessed she was by looking beyond PoTS.

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