Like some of the people she later met when her circle of friends had to change, Becky’s pre-syncope ordeal started several years ago when she was only 16 years old. It was at the prime time of her life. She often wondered why it had to come at that time. She had multiple dizzy spells when standing, the type that most had at some point in their lives. The most memorable types were those that occurred while standing in a hot bath. During those brief moments, everything would close in and go black and blurry.
Becky did not attach much importance to it since many other people also confirmed having such at special times. Nonetheless, she went to a GP who shared her thoughts. After all, she was a teenager who was at the ripe time for hormones to take over. They concluded that whatever she felt must be a result of hormones and the peculiarity of her age.
However, the spells became more frequent and prominent. Sometimes, Becky found herself on the floor due to the impact of the dizziness. Nonetheless, she never lost consciousness. The GP, still with her reservations, referred her to a neurologist who also thought nothing much of the condition. He dismissed it, thinking it was a result of her being a young female. Since the two professionals dismissed the entire situation, Becky also relegated it to the back of her mind. She believed that with time and as she grew older, the spells would fade away.
After some time, Becky left for University in Newcastle along with the condition. Instead of getting better as she had hoped, nothing appeared to change. So, once again, she found her way to another GP. This time around, she was in luck. The GP had just heard about a “Blackouts and Falls Clinic” managed by an eminent Professor. Without wasting more time, the GP referred her there.
On getting to the clinic, she was asked to undertake multiple tests: MRI brain scan, echocardiogram, ECG, 24-hour ECG tape, 24-hour BP, tilt test, etc. Anything and everything that could give a clue to what was wrong got included in the test.
Becky was a little bit embarrassed that she was the only “under 60” in the waiting room in the clinic. However, she consoled herself with the fact that at least, the matter was getting the necessary investigation. It did not matter if she had to be the youngest person a hundred times over as long as she was getting answers!
Eventually, she got placed on fludrocortisone to combat postural hypotension. But not before she had tried all the conservative measures first. She tried drinking 2-3 liters of water daily with 6 cups of coffee, took as much salt as she could, wore strong support tights at all times, and completely stayed away from alcohol. Nothing she tried worked! And they were not funny, considering that she was only 18 years old and was at University! She was meant to be in the thick of enjoying her life. But there she was, fighting to have a normal life.
Her determination and a strong desire to have a normal life like everyone kept her resolve to go through everything she got subjected to. With the introduction of fludrocortisone, the problem improved a little, even though there were always peaks and troughs. On some days, she would be in high spirits. On other days, she would have a series of dizzy spells.
None of these occurrences tied Becky down. She forged ahead with the conditions. She completed her university education, bagging her English degree in good time. After that, she decided to train to become a nurse. It was not a conventional career move, as there was nothing related between English Language and Nursing. Nevertheless, Becky had no regrets.
However, her career progression was not a smooth one. In between the spells, she had to go to work. Shift-working as a Nurse exacerbated her condition, especially during the night shifts. Sometimes, the situation put her at her wit’s end while she encouraged herself at other times, but she trudged ahead.
She got referred to a pharmacology team at Liverpool. On seeing the team, the consultant said, “I have no interest in your condition.” Those were his exact words, and they haunted Becky for a long time. They were like iced water on her emotions. Whatever hope she had cultivated on her way down to the clinic became dashed. She got devastated that her dream of becoming a nurse might be over even before starting because a medical professional could not help her. He also refused to refer her to someone who could.
Although Becky was in the medical system, she never knew it could fail her the way it did. It was one of the lowest periods in her life. The problem was not the inability of the team to find a solution to her condition. It was the consultant’s blatant refusal to have anything to do with her or see things in another way that irked her. It was a depressing period for Becky.
The consultant indicated on many occasions that he thought the condition was just “stress,” and Becky was “highly strung.” Those words stung Becky. She could not make him see that the cause of the stress was simply that she could not stop falling over or going very faint in specific circumstances. Becky had taken time to study and observe the sequence of her condition. Activities such as standing, yawning, and shouting caused her to become dizzy. She also noticed that some strange actions such as take-off and landing of air flights, and blowing up balloons also triggered the spells. But then, they were easier to avoid and do not affect her daily life. The rest, however, were things she could not evade. That meant only one thing: her dizziness was every day.
One traumatic day, Becky was working on coronary care but ended in A&E herself. The doctor administered drugs for vertigo. After that, she finally managed to get a referral to the Cardiothoracic Centre in Liverpool. The consultant, in this case, took her condition more seriously. He assured Becky that what she was experiencing was a medical problem and not something she made up. At last, she saw someone that believed in her. She was beginning to think that she was going crazy with the way other doctors had handled the situation.
The consultant repeated some tests on her, tried Becky briefly on a low dose of midodrine, and then inserted an arterial line in her arm for a few hours. He wanted to be sure that it was her heart rate rather than her blood pressure that was causing the main problem. It would also determine the line of action for its treatment so that they would not continue to pump drugs into Becky’s system.
Again, Becky felt embarrassed with the entire situation. As a student nurse, she selected the facility as the base hospital. In a moment, she had transformed from following the doctors and nurses around to receiving treatment and care from them. What an irony of life! But, characteristic of Becky, she did not dwell much on it. Her visit also yielded a positive result because no pain became registered. In the end, the doctor placed her on a beta-blocker. It improved her situation so that she could qualify as a nurse.
Opportunities come but once. For those that recur, they were never opportunities. Seeing the available window of opportunity, Becky seized it without wasting time. The opportunity she had was that for a brief period, she had some relief. Although it was not a smooth endeavor, Becky put in her best to become the nurse she had dreamt about. That was a decision she never regretted.
Nonetheless, the beta-blockers only offered some sort of relief; the primary problem never went away. Becky was still having her alternating good days and bad days. There were acute periods of intense symptoms manifestation as well as great weeks where everything went smoothly, and it did not bother her too much.
However, after a while, things got out of hand. Most drugs have their side effects as synthetic products that they are, regardless of their effectiveness in treating severe conditions. It was the case with the administered beta-blockers. Although they helped in managing Becky’s condition, their side effects soon surfaced, and things got out of hand.
The circumstances Becky found herself in upset her so much. Uncharacteristic of her, she had to take some time off work sick for the first time. It was getting too much for her to handle. The entire situation was synonymous with suffering for an unknown cause. She also had another dilemma on her hands; she had no consultant in Manchester to run to but a GP who did not seem to know what to do. Also, her nursing background was useless in this case. It appeared that the entire medical team had no idea what could be wrong with her. Right before her eyes, a sad drama unfolded. Unfortunately, the drama was her life, and she was the star actor.
In a desperate search for answers and explanations, she turned to the web. She scoured the entire internet, spending long hours of days and nights looking up possible ideas. She redirected her excess energy and frustration to this lone course of action. Eventually, Becky got her answers like other individuals before her. She got the name of an appropriate consultant that she could see. The person came highly recommended. Seeing him became another hurdle as she had to wait until there was an available time. Finally, she got her appointment in May. Becky ensured that nothing stopped her from seeing him.
She was not disappointed when she met the consultant. The first time created a lasting impression of him in her mind. The first word that came to her mind during their meeting was “support.” The consultant was not only supportive; he understood the impact the condition had on her life. For Becky, it went beyond her job. Yes, her dream of becoming a nurse was a major event in her life, but her episodes also made it difficult to get basic things done. Her abilities to perform day-to-day activities like climbing a flight of stairs or enjoying her hobbies have been affected. Summarily, the quality of life she had was nothing to boast of. The consultant promised to help her, especially with her forthcoming wedding. That was a major source of concern for Becky, but the doctor promised to help her enjoy it, rather than just get through it. This, he promised to do, without Becky falling over.
Finally, after a very long time, Becky had someone that took her seriously. She appreciated that, and it pleased her beyond measures that he did not make mere promises to impress her. Indeed, her wedding was glamorous! Becky had a wonderful wedding and honeymoon. Once again, it made her understand that our personalities are important. Some years ago, she had almost given up on medical science because of the harsh treatment and unkind words the consultant in Liverpool said to her. But here she was again, appreciating the assistance she had enjoyed so far from the field. The difference in her encounters was the personalities of the two consultants.
After taking fludrocortisone for a while, she had to go off it to have a repeat tilt test. Although Becky would like to have a definite diagnosis, she realized that she may never get that wish as she had been warned that it may not be possible. In most cases, her symptoms were the manifestations of two or more underlying conditions. While Becky was thrilled that whatever she had- postural hypotension, PoTS, vasovagal syncope, or something else, was not life-threatening, it gravely affected her life. It was hard accepting that she could not do everything she would love to explore. Nonetheless, Becky determined that she would carry on and not let them stop from having a go.
When things got better, Becky forged ahead with her community nurse career. However, September 2007 came with another fresh wave of concern and sadness. She collapsed at work after a deterioration in her postural hypotension and benign sinus tachycardia. This time around, she got sent home until she could see the Occupational Health Team.
That September marked the beginning of the end for her budding career. Nursing was a job dear to Becky’s heart, and she still misses it, but it was time to let it go. As expected, it devastated Becky, putting her on a roller-coaster journey of tears and cries. She also tried her best to return to work, but it did not happen. In all fairness to her employer, he made the temporary “reasonable adjustments” as required under the Disability Discrimination Act for her to work in clinics where she would not be alone. But after another tilt table test in October of the same year, she got her PoTs diagnosis.
Becky could vividly remember, as if it happened yesterday, driving home later in the day after getting the diagnosis. She knew it was probably the last time she would be at the wheels of a car to drive herself. She would not be allowed to do that again. Loss of her driving license also meant no job for her because she would not be able to reach many patients without a car as a District nurse! In retrospect, it was the push Becky needed to accept that, the driving issue aside, her nursing role did not support her current state of health.
Even though she was no longer working, Becky did not burn the bridges behind her. You never know when you may need to make a return journey to where you left. She kept in touch with her line manager at the Primary Care Trust, and she followed procedures while waiting for Occupational Health and cardiologists’ reports. It was a frustratingly long and agonizing wait. However, it was clear to Becky that she was facing redeployment. Going by the law, an employer was bound to try to offer the employee an alternative role as long it was available. It did not have to be of the same level of responsibility or wage, only what was on the ground, but it must at least suit the employee’s skills.
Seeing that the possibility of getting another suitable role with her current employer was slim, Becky naturally sought employment somewhere else. She did all of these while she was on her sick leave, maximizing the time and opportunity to apply and attend interviews. In the end, she got positive feedback from one of the interviews she had with a private firm, even though she did not later get the job. However, there were many other roles she was qualified for but did not get invited for an interview. Many of the application forms Becky filled out asked for information about disabilities. Of course, she could not prove anything about why she was not selected for interviews. But they also refused to provide feedback when she requested it. She naturally concluded that they might have to do with her condition.
The longer Becky stayed homesick, the more the negative impact of her condition became well-established on her physical and mental health. A major part of her struggle was with her self-confidence. She started losing confidence in herself and her abilities. Becky knew that without what she had now come to accept as a disability, she would not be out of a job. Even if she changed jobs, getting another one would not be as difficult as it was proving to be. She believed that her choices were now hugely hampered by her disability. Although that was not the winner’s way of thinking, Becky found herself getting drawn into that pattern as the days got elongated without anything falling into place.
Regardless of her gradual loss of self-confidence, the fighter in Becky was not ready to give up. If she continued to stay in the house and brood over the stagnation and her health condition, she would give in to the effects of PoTS. So, she decided to go for daily short walks to clear the clutters in her head. It was a method to stay as physically and mentally fit as much as possible. At first, her body resisted, preferring to remain at the point of inertia. But with consistency, she began to have results. She tried hypnotherapy, and relaxation techniques, and went as far as seeking private therapy.
You will not get anything if you do not make a move; that was what Becky realized. Instead of trying to get fit, another available option was to remain at home until depression set in. But that would only add to the current challenge she was facing. Becky knew that she had so much more to offer. Fortunately, she got amazing support from her husband, friends, and family.
The 8th day of January of the following year eventually presented an opportunity for her to have a meeting with her line manager. An HR representative and her union rep were also present. Quickly, they laid her options to her: she could drop 2 to 3 pay and responsibility grades to remain with the facility. Becky took them up on the offer. In her opinion, having a job was definitely better than having no job at all. Also, returning to work, regardless of the level, would her to re-build her confidence and increase her office-based skills. Without any job, coupled with the fast rate of transformation, she would soon become phased out of the employment system.
With her resolve, Becky applied for one of the roles and had an interview. Luckily, she had a kind manager who felt that there must be another role more suited to her qualifications and experience. She went ahead to check through the vacancy list, found an office job at her previous level, and arranged an interview for her.
In retrospect, Becky could have turned down the first offer given to her. They did not only grudgingly call her back, but she could have felt belittled by the offer. However, she did not, and it turned out to be a blessing in disguise. Not only did she have her job back, but she also got a less stressful one with no cut in pay and level.
During the interview, PoTS reared its ugly head again, making her suffer some pre-syncope spells. However, all of those got waived for her, and she got the post with a short probation period. For someone who had the kind of history she had, it was not surprising when she resumed work in a nervous state. Two major reasons formed her nervousness: working an office job was new to her, and she could not expect her new colleagues to help and support her as her friends always did.
It was not easy trying to make a new name for herself in a new career without even adding the collapses and drunken sways on the way out of meetings. However, her colleagues were extremely supportive, and so was her manager. To make her work easier, he changed the filing cabinets. That prevented her from bending and crouching to get the necessary documents. He also ordered a fan to cool her side of the office and always supported her time off for medical appointments. If he did nothing else, those were more than enough already. It made her work easier and created a supportive environment for her. Becky also received invaluable support from Access to Work, an affiliate of Job Centre Plus charged with helping people with disabilities to get back to work.
Among the factors that helped Becky to get back to her feet was that she was prepared to consider and focus on what she could do, rather than what she could not. That included giving up her nursing career and some of her independence via her driving license. It was not easy for her to do that, but it helped her to focus her energy on what really mattered. She got the results of her perseverance soon afterward. A year after she first went off sick, she settled into her job. Not only that but her health also somewhat improved. Above all, her confidence gradually picked up its pace again. She no longer felt like a liability or unneeded.
Of course, there are still some things that she would not attempt, but she was out of the worst phase. Becky lives with the fact that there will always be peaks and valleys. She has learned how to cope with them. Recently, Becky also met an eminent Professor in London who plans to carry out more investigation on her condition to nail the diagnosis and look at potential treatment options. However, that will have to wait for another year or more as she discovered that she is pregnant. That was one of the greatest news she had received in a long while.
Of course, Becky is aware that it means more ups and downs for her, but she is ready to give it her all. With plenty of support and advice from her doctor and supporting members, she would embark on the journey of starting her family. Nonetheless, Becky knows she exudes more confidence about dealing with it than a year ago.
Support! Support! Support! It is a truly powerful tool in combating PoTS and other associated illnesses. Becky was fortunate in having such an understanding manager and a supportive employer. The line manager would not have been able to help her as much as he did without her employer’s knowledge. She knows not everyone would have her kind of luck. She is also aware that many people with NCS, PoTS and other conditions collapse more frequently than she does. Many become more incapacitated afterward, making work more difficult and also becoming a potential risk for employers.
She wishes lots of luck to anyone else going through a similar situation. Keep positive, find out your rights, be prepared to adapt and change, and keep believing in yourself. You have skills and experience which will be valuable to an employer in some capacity. And if that does not happen, you may even be able to work from home, start your own business, or work freelance if that suits you better. The bottom line is: Don’t give up hope! Becky tries to carry on without giving any undue chance to PoTS to take over her life.
