For Luke, his story and his battle with PoTS began as early as 2012, at the age of 17. He was young, agile, and full of life. Who would not be at that age? Not only that, Luke was as fit as a horse. Lifting heavy things and staying active was not new to him because of the nature of his job. Luke worked as a shop assistant in a bedding shop on Saturdays. So, Saturdays meant the lifting of heavy items. However, one particular Saturday came by, and Luke discovered that he was struggling to lift a light duvet cover off a shelf. That was anything but normal. How heavy was a duvet, a piece of clothing to the furniture he often carried? Luke was surprised and baffled. No matter how much he tried, his arms just would not budge!
Almost as expected, based on the other trends, Luke thought nothing of the incidence. After that brief episode, everything went back to normal, there was no recurrence, and life went on as usual. Based on that, Luke shrugged off the oddity and went about his business.
However, a recurrence jolted him to attention. After several weeks, the lifting issue happened again. This time around, it happened whilst he discharging his duties at work. As Luke lifted a duvet off the shelf for a customer, he flushed all over; he lost his hearing and found himself struggling to catch his breath. Luke lost his grip on the box, and it fell to the floor as a result of all the signs and symptoms simultaneously happening. Although the incidence was brief, it affected him in a way he had never experienced. Never in his entire young life had any part of his body felt as strange as his hands did during the episode. They became aliens to him, and he could feel the tremors going through them. The occurrence frightened Luke, causing him to briefly pause at work to take a break. After that, nothing like the distressing episode occurred again throughout the entire day.
Luke did not realize that his body was only trying to get his attention and prepare him for the long days ahead. By August of 2012, he had more symptoms rearing up their heads. His day became occupied by dizziness, along with accomplices such as hot flushes, night sweats, and debilitating migraines that refused to let him be. Nothing he tried to get rid of them worked. By then, the seed of worry set in for him. People started to wonder what was wrong with him. Luke’s work suffered too; so much that his colleagues at work began to ask if he felt alright. He hardly had any energy to do anything. The once industrious guy had no trace of strength left in him. The problem was that he had no idea what was going on in his body. Also, no one believed him. They found it hard to think that he was truly experiencing all those symptoms. Since he also had no idea what was going on in his body, it was difficult to string many meaningful explanations together.
Unable to keep such things to himself, Luke opted for medical help. So, in September, he found himself in the doctor’s office. After several observations, questioning, and discussions, the doctor told him whatever he felt was due to stress. Luke thought otherwise, but he could not argue with the doctor. The doctor had a wealth of knowledge about what could be going on in anyone’s body. Therefore, Luke decided to go with his explanation. However, on the other hand, he could not shake off the feeling that it was something else. The seed of self-doubt sprouted up in him. When people doubted his explanations, Luke also started to feel that he must have imagined things. All of these things must be inside his head alone. Then, the symptoms became less frequent, and Luke accepted that indeed, it must be either of the two things they told him. If it was not stress-related, then he must have imagined everything.
By January of the following year, which was 2013, Luke developed a cough which led to a chest infection. This illness took a while, but he eventually recovered from it. Then, over the next few weeks, he started to pass out and slept more during the day. The tiredness he had felt from the first time was fast catching up with him again. However, this time around, it was in the advanced stage. Without doing anything exerting, Luke continuously felt drained, resulting in his need for more sleep. He became breathless, and his heart acted as if it wanted to escape from his chest. It was a terrible and indescribable feeling. Now, Luke was sure that he was not faking all these symptoms. They were too real to be fake, even if other people said otherwise. It was his body, and he alone knew what was happening to it!
Eventually, he went back to the GP that saw him the first time. However, this time around, Luke went with a resolution. He would not allow the doctor to easily write off what was wrong with it. His guts told him something was not right, and he would not be fobbed off. Nonetheless, he also hoped that the symptoms would disappear as they had done in the past, but it appeared that this time was a different one. Not only did they refuse to go away, but they also got worse. As a result of his resolution, the GP had no choice but to call for numerous blood tests and ECG. Also, Luke got referred to have a tilt-table test at his local hospital.
The keyword that got Luke what he wanted was perseverance. Along with his strong conviction that he could not be faking the symptoms, he had to stand his ground to get what should have been done since the first time he complained. While it is good to listen to people’s ideas and opinions, what ultimately matters is how you feel.
By April of the year, things were definitely worse. He had not done the tilt-table test as it was not yet his appointment time. The day before the tilt-table test, Luke woke up on the bedroom floor feeling disorientated. He could not remember what had happened. The last thing in his memory was that he was downstairs watching TV. He could not explain how he ended up upstairs or what he was doing on the floor of the room. Not only did he suffer memory loss, but Luke was also finding it hard to stay awake. As luck would have it, he was not the only one in the house; his brother was at home too. Propelled by reflex and quick thinking, the brother called an ambulance as they could not take chances with him. Luke was suffering from chest aches and pain in his neck, both adding to his difficulty in breathing. It was like a scene in a movie. Finally, the ambulance came, and he made it to the hospital without a hitch. Luke was grateful for his life. If he had been the only one at home, it might have been the end for him. The timely assistance was what saved him.
A few hours later, Luke got discharged after the hospital performed a CT scan on his neck. He was certified fine. But Luke was frightened. He had no recollection at all, not even the tiniest detail, of what had happened. That alone scared him to his core because it was the first time such would happen to him. With the way things were going, he needed to get to the root of what was wrong with him, and he needed to do it fast.
Starting with the tilt-table test, he went for his scheduled appointment the next day. Halfway through the procedure, Luke became flushed. He felt as if he was getting roasted alive in an oven. Due to that, he became dizzy and disorientated. As he lay on the table having all the symptoms, his mind was all over the place with several questions. Was he paralyzed? Why was his brain telling him one thing while the body refused to do anything? Was he having a severed communication pathway between his brain and the rest of his body? Luke kept all of these to himself. After the tilt-table test, he got referred to a cardiologist at his local hospital.
Finally, May 2013 brought some good news for Luke. Of course, it was not a cure, but it was a step in the right direction after several months of pain, anguish, self-doubt, and lack of explanation. Luke got his diagnosis, and an unexplainable relief washed over him. It was an overwhelming feeling: coming out of the dark haze of not knowing what he dealt with. It also signified that someone had finally believed his narration about the symptoms. If Luke had not seen the cardiologist, he would probably still be thinking that everything had played out in his head alone. Now, he could boldly say what was wrong with him. The cardiologist placed him on Fludrocortisone and some medications for migraines and joint pain. Then, he got referred to London for more examinations and further tests.
If Luke has anything to be grateful for, it would be for the way the cardiologist handled his case. When every other person had either mocked or doubted him, the doctor had staunchly believed in him. It was his faith in Luke that built his self-confidence and helped him to maintain a healthy mental state until the right diagnosis got made. It showed the importance of having a support system. It could make the entire difference in whether a victim of a particular illness got better or worse. In this case, PoTS thrived in the atmosphere of unbelief.
In October 2014, Luke had two consecutive days dedicated to tests at the National Hospital for Neurology and Neurosurgery (NHNN). Before going there, he believed it was going to be two whole days of horror. Even at that, there was no going back on his journey to freedom. Whatever pain he would feel for those two days would never stand in contrast to what he had gone through since the beginning of his ordeal. Fortunately, it appeared that his imagination had been exaggerated because the tests were not as bad as he thought they would be.
Eventually, Luke confirmed that he had PoTS but not only that, his diagnosis included Joint Hypermobility and Raynaud’s syndrome. From what he discovered, his mobility was going to be a challenge. Although the diagnosis was saddening, it did not come as much of a surprise to Luke because of the severity of his symptoms. He prepared his mind for rougher days ahead of him. He did not understand why life had to throw three movement-related conditions his way. It was as if one was not enough. To come to terms and accommodate the nature of his condition, the facility offered him cognitive behavior therapy (CBT).
Since then, Luke had been on only Fludrocortisone. It was a choice he opted for by himself. He wanted to try to control PoTS with minimum medication. It required dedication, determination, and consistent hope in trying times, but Luke made up his mind to go that way. As expected, it had not been the smoothest journey, but he persevered.
In 2014, Luke realized the importance of having emotional support. The entire incident had detrimental effects on his mental health. If not well-monitored, it could get out of hand. He communicated his need to a specialist and received the proper counseling on how to live and deal with PoTS. He knew that asking for help was not a sign of weakness. Instead, it was an indicator and a testimonial to his strength.
It showed that he was strong enough to face his deepest areas of fear and confront them. For whoever is going through similar circumstances, never hesitate to cry out for assistance when it is needed. Although people may laugh and ridicule you, one person may attend to you through that platform. On the other hand, if you do not say anything, nobody will know that you have a challenge, and there may be no way out of it.
For Luke, even though getting a diagnosis meant he could eventually look at his demons in the face, it also felt as if his life would come to an end. Having PoTS alone was enough to do the job, having it with Raynaud’s and Joint Hypermobility could mean nothing but the end of the world- his world. You may also feel this way, especially if you are newly diagnosed. However, in retrospect, Luke recognized that PoTS opened a new chapter of life for him.
At first, it appeared negative, but even amid all the negativity, Luke picked out the positivity. Of course, he lost some friends and missed out on many job opportunities, but he knew it could have been worse. He could have remained immobile for life. He believed those friends who left him because of his condition were never real in the first place; a friend in need is a friend indeed. PoTS sieved his circle for him. As for the jobs he lost, he got something better in return. Having PoTS made him a stronger person. He tapped into a core of steel that he did not know that he had. Luke did not choose to have PoTS, he did not have a say in the matter, but he made the best he could out of the situation. He initially thought that the entire incident was his fault, but he now knew better.
Someone once told him, “You need to learn to control PoTS. Otherwise, it will control you for the rest of your life.” It was the best piece of advice anyone had given him in a long time. It completely reshaped his way of thinking and his approach to PoTS. Luke refused to become subservient to the “invisible” ailments that sought to control his life. With that nugget in his mind, Luke took time to study and observe his interaction with PoTS. He learned his triggers and what to do to overcome them. At least, by avoiding them, he could reduce the rate at which his episodes occurred.
On a different level, Luke concentrated some of his efforts on doing more exercises and core strength training. While it was excellent for him to grow his mental health and tolerance, Luke knew he could not focus on them alone. He should work on his physical abilities as well. Nonetheless, Luke understood that it was easy to go overboard while exercising. So, there was always a reminder to bring him back to the ground level once he started doing more than what his body could take at a time. Each day, Luke discovered more ways to control PoTS so that he would live his life and be happy.
Slowly but surely, Luke rebuilt his life. It was like starting all over again. He discovered a new hobby that even PoTS could not take away. If he could not do the normal jobs of 8-5 like every other person, it did not mean that his youthful energy has to go to waste. Luke looked inwards and discovered that he had something that many others did not. His struggle and ongoing victory against PoTS placed him in a peculiar position. His life could become a source of motivation and strength to others if he rightly channeled it.
With this conclusion, Luke started a blog. His mission was simple and clear: help others who were in the same situation as he was. Therefore, Luke blogged about his journey with PoTS. He ensured to put in many details as they needed. Also, he assisted in the running of a patient support group in Poole for patients living with PoTS and Syncope. He developed an online Facebook forum so he could talk to other people around the globe who were living with PoTS like him. Lastly, Luke forayed into nutrition, enrolling in courses that would increase his knowledge about eating right and healthy.
Luke’s passion got fueled by his experiences, especially in the early days. If he had the information he needed, maybe his case would not be so bad. If there were others with PoTS, then they had to hear about his situation so that they could get medical help on time. He still has the bad days, and passing out most days was still part of him, but that has become his new reality. It was the new “normal” to him. The past few years had been tough for Luke, but he has become determined not to allow PoTS to ruin his life. No matter what happened, he would always rise above the ills of his situation. What many people have failed to realize, and need to know, is that he is still the same person he was before his diagnosis. The difference is in the way his body functions.
Although Luke had lost some people he knew as friends, he met some other great individuals through PoTS; people that he would never think of meeting in his life. They were also struggling with the condition, and PoTS brought them all together as good friends. His initial reasoning had been that he would always remain alone, but with this new circle of his, Luke knew he would never be. His new friends understood firsthand what his life was like. Anytime he suffered from low spirits, they had a way to cheer him up and made him realize that he was not dealing with PoTS alone. He had them, and so does anyone in his shoes.
Luke acknowledged that without the assistance of those who had helped him through his diagnosis- doctors, family members, and new friends, he would not have survived the bitter lemons. They helped him become a stronger person and enabled him to see his life in a new light. As a result of their dedication to him, although they did not have to do anything for him, he was plowing ahead. The only thing he can do is to thank them for standing by him.
