Birthday and Christmas gifts have taken on a whole new meaning for me since getting sick. I am now all about the practical, the useful, the helpful. With the holiday season swiftly approaching, what better way to prepare for Black Friday bargains than to compile a list of products that make our lives easier. Here are a few of my favorite essentials, perfect presents for any potsy's wish list in every price range.
Stocking Stuffers:
Wrist Blood Pressure Cuff, $20-$40
Head Massager, $5-$10
Snack-Size Almond Containers, $2-$5
Epsom Salts, look for lavender scent for a spa-like experience, $2-$5
If you asked me whether or not I would be exercising after I first got sick, the answer would have definitely been no. I could barely walk from room to room without getting weak and winded. Chronic tachycardia will have that effect on a person. I couldn't take the stairs on my college campus, instead I had to rely on elevators and even then it was a stretch just to get myself from class to class. This was all before my POTS diagnosis of course.
My EP kept urging me to join a gym and just start slowly on bikes and weights. For a long time, I ignored his advice. I then stumbled upon a blog about a research study in Texas on exercise and the POTS patient. I was intrigued. I immediately contacted the blogger and the research associates but never heard back, so I am unclear what Dr. Levine's specific exercise protocol is, but the blog mentions recumbent bicycling, swimming, rowing machines and weights. So, I did some research, and started exercising at a nearby rehab facility. Since Dr. Levine's specific protocol was not revealed online, the owner designed an exercise regime specific to my needs. He performed an EKG, blood pressure readings, and a test called the BioZ that measures cardiac output, stroke volume, and things of that nature. He said the always reassuring, "I've never seen anything quite like this before," in reference to my off-the-charts BioZ test results. He then performed the BioZ test again five minutes after exercise and my results were encouraging: everything had come back into a normal range. He concluded that I need to exercise in order to keep my circulation going. And I believe he is right. However, in the beginning, I couldn't tolerate any exercise. But now that I have gotten my condition somewhat under control through salt, fluids, and the occasional beta blocker, I am able to do certain exercises and movement really does make me feel better.
If I don't exercise for a couple days, I start to notice the effects on my body. When I am diligent about my exercise routine, I am much less lightheaded and suffer fewer woozy spells. I purchased a recumbent bike to use at home and ride anywhere between 5 and 10 miles every other day at a low to moderate resistance setting. If I ride it a bit each day, I tend to feel better. However I think it's important to take a day off the bike here and there to let my muscles recover. I try to do light weights with high reps 2 to 4 times a week for about twenty minutes at a time as well. I do some leg work, abs, back, and shoulders. I have definitely noticed an improvement in my muscle tone and I am a bit stronger overall. An occasional pilates workout provides a nice diversion from my standard routine and if I am experiencing worse than normal brainfog I turn to yoga, as it enhances bloodflow to the brain because of all the inversions. Lately I have not been devoting as much time to exercise as I should be, and I can feel it. My woozy spells are indeed motivation to get back to the gym.
As with any exercise regime, please consult your doctor before beginning. Exercise can be a positive experience that improves circulation, muscle tone, and creates natural mood-boosting endorphins. Take it slow, if exercise causes you any abnormal or unbearable pain or discomfort, stop and revise your regime. Don't feel pressure to exercise for hours per day. Sometimes just minutes will do the trick; some exercise is always better than none at all. My best advice is to start all exercise in the recumbent position, doing leg lifts on the ground or from bed if that is all you can tolerate. Don't push yourself too hard. Monitor your heart rate and blood pressure throughout, at least in the beginning. Your stamina should increase over time. Be patient with your body, and most importantly, listen to it. Do not exercise to the point of exhaustion. Start with brief bursts of exercise and wait and see how your body responds the next day. Over time you may experience a noticeable improvement in your symptoms as I have. Exercise has quickly become one of my best friends.
We all know that dysautonomia is a very real medical condition that causes debilitating physical symptoms. The numbers don't lie. A resting heart rate of over 120 beats per minute is rarely ever induced by anxiety, but rather a sign that something has most certainly gone awry in the body. Any reasonable doctor knows that.
It was beyond frustrating over three years ago when my old PCP, an airbrush-tanned and airheadishwoman who didn't even attempt to listen to my heart with a stethoscope, wrote me a prescription for Zoloft, told me almost all young women my age suffer from severe stress and anxiety, and sent me on my way. It was even more frustrating when the Zoloft aggravated my cardiac symptoms and made sleep even more impossible to achieve for the week that I took it. After informing her that I would not be taking the Zoloft because I did not think I needed it, she finally humored me and listened to my heart with a stethoscope, and then sent me promptly to a cardiologist. At least she had sense enough to do that or I may have very well died under her care. Unfortunately, the aforementioned situation is all too familiar for POTS patients. We have all had to actively convince doctors that there is something real wrong with us. Thankfully I didn't have to wait too long to find a doctor who took my symptoms seriously. Nonetheless, before the official diagnosis, and even now, I still have selected family members telling me I need to get some "coping skills." Of course that angers me greatly on the inside considering I don't talk about my condition much at all with family because I don't want to be perceived as a complainer. So for the most part, I keep my struggles, thoughts and fears to myself and am guarded around certain relatives in particular. This blog has become my outlet for open sharing. And so has the online POTS community. I have met so many amazing and kind people afflicted with this strange and awful illness, and they have been my biggest and greatest support system. Pretty much the only way I know how to cope is to share with people who care.
On that note, I considered sharing my story with a total stranger (aka a shrink) for therapeutic purposes. As a communication major in college, one thing I learned about myself is that I scored quite high on the self-disclosiveness scale. I typically don't mind telling total strangers my life story. Getting sick at a young age has made me even more open in many ways. Being proper, guarded and reserved requires entirely too much effort on most days, so I am usually an open book. It's just easier that way. For some reason though, I still hesitated to visit a psychologist. Primarily because I didn't need another person just to listen to me ramble, quite frankly, I needed someone who would be willing to dispense advice and provide me with some tangible ways in which to cope with chronic illness.
I conducted some careful research and found a psychologist who I believe is my perfect match. She is not just an ordinary psychologist. She specializes in people dealing with chronic illness. Although she had never heard of POTS, she asked me all about it, had looked it up by our second appointment, and understood that it has many similar symptoms to those of Chronic Fatigue Syndrome. She sees chronic fatigue and epilepsy patients most commonly. I was relieved to hear that she had seen patients with neurological conditions before. Her demeanor is very friendly and non-judgmental. She listens well. Her office is comfortable and inviting and she doesn't mind if I lay flat on the floor during our sessions if need be. Most importantly, she also recommends practical coping tactics. I will relay a recent difficult event or setback to her, and she will respond with ways in which I could choose to feel about it, or how to reframe certain negative situations into positives. For me, this is a helpful tactic, since POTS has seemingly put a damper on my once optimistic personality. She also reminds me about practicing "pacing" (basically her version of The Spoon Theory) and not feeling guilty about it. Pacing is something that I am hoping we will focus more on in future sessions. She seems to have some practical techniques when it comes to things like scheduling events or telling people "no" in tactful ways. These are the concepts I have needed to refine for a long time. I look forward to continuing my sessions and hope to gain the coping skills and life skills I need in order to live happily and productively with POTS.
So, my honest opinion is, anyone considering seeing a shrink should definitely do so. Worst case scenario, you have wasted an hour of time and will never return. Best case, you will find someone who understands your predicament and can provide objective and honest advice on how to cope with whatever life throws your way. If nothing else, the experience should provide you with some validation that you're not actually certifiably crazy. According to my psychologist, the emotions I'm experiencing are a normal and healthy response to dealing with chronic illness and she does not think I need psychiatric medication of any kind. It is refreshing and comforting to know that at least there's someone out there who recognizes that this condition is not all in our heads, as so many of us have been told repeatedly. Ignore the stereotypes associated with seeing a psychologist or psychiatrist. It does not imply insanity. All it means is that battling a chronic illness will even make the sanest individuals a little crazy. Sometimes we all need a little help in that department.
I have been wearing compression stockings religiously for the past year and I can't live without them. My grandma gave me my first pair that she had ordered online and that pair has been absolutely wonderful. They are knee-high, toeless, beige and unattractive. But they do the trick like no others I have tried. The problem is, she didn't remember what kind they were, and I stupidly threw away the box they came in without thinking twice about it. So for the last year I have been faithfully washing and wearing the same pair nearly everyday as I have searched, purchased, and tried about twenty different pairs, and every time I have been disappointed with the results. I have tried everything from Jobst, (which is supposed to be the best) to the no-name pairs online and failed to find any like the pair from my grandma. Luckily, the last time I saw her, she let me look at her stash that she still had in boxes - and bingo! I found a pair with the identical weight, texture and feel of the ones I have been wearing! They are called Jobst Relief compression stockings. There is a HUGE difference between the Jobst Relief line and the rest of their stockings. Although their other stockings might be slightly more attractive, the Relief ones work the best for combating lightheadedness and cold feet. I typically wear them under jeans or pants anyway so it's no big deal. They are available in black or beige, toeless or regular, knee high, thigh high and waist high. They are a bit pricey like all compression stockings are, but if your insurance covers them, then stock up. If not, I would still highly recommend investing in at least one pair. They don't just minimize lightheadedness and fainting, they also help with leg pain, fatigue, and circulation.
Yesterday my neighbor appeared at my doorstep visibly frightened and ill. She is a nice lady living with diabetes and bad neuropathy in her feet and was too weak and ill to go pick up her medications. After delivering her pills, I asked her if she had ever tried compression stockings. She hadn't but said that she had been thinking about trying them. I realize I am not a doctor but I recognized this woman's desperation and fear. She was visibly ill and looked like she was about to pass out. And I had to wonder if the lightheadedness she experienced that afternoon was a blood sugar issue or a case of orthostatic intolerance. Either way, I figured I should give her a pair of compression stockings to try. I ran home to get them and she has not taken them off since I gave them to her. Today she reported that last night was the first night in months that she had not experienced any foot or leg pain. She is now going to talk to her doctor about a prescription for them since they provided such immediate relief. It is amazing how often an old-fashioned remedy can be so much more effective than a pill.
