Category: Support & Recovery

When you got married, and the pastor or priest asked you to recite your vows, did you ever think that you’d genuinely have to share the pain and sorrows of your life partner? 

 

The thought does not often come to mind of many couples, especially when both are super fit. They rarely get sick aside from the usual muscle ache or seasonal flu. But when your better half has or develops a chronic illness, that’s when the rocky road starts. 

There may be days when your spouse needs help in moving out of the bed. In some days, you may not be able to touch him or her as it hurts everywhere. In the worst situations, your significant other may also get short-tempered since their movements often have limitations. 

Avoidance regarding talking about illness was a familiar, yet still surprising aspect of my experience. — Tamara McClintock Greenberg Psy.D.

Regardless of those struggles, however, your marriage can still work for decades. You merely have to: 

Communicate 

 

Right after opening your eyes in the morning, the first words you utter should go along the lines of, “How are we feeling today?” or “Are you OK?” If your ill partner gives you a positive reply, that means the chronic disease isn’t active, and you will most likely have a normal day. In case you get a “no,” though, then you can expect twists and turns before nighttime comes. 

Checking in with your spouse is very significant as that’s the only way you’ll know their present condition. It isn’t alright to never ask, trying to believe it’s all part of a dream since that will be unfair to your husband or wife. Besides, it may result in fights, which folks with chronic illnesses don’t need at any given time.  

Plan 

When you are both in a fantastic mood, make time for creating your game plan for the rest of your life. That should involve what your better half can do at home if they’re not sick, what you have to do to pick up the slack, how you can figure out when the lingering pain turns itself on, etc.

When one member of a romantic partnership becomes chronically ill, the dance of shared living that the couple has built together is stopped. — Katie Willard Virant MSW, JD, LCSW 

The thing is, managing a chronic illness is like going to the war zone. If you step on that battlefield without a sound strategy, one of you will lose your patience, and the marriage will crumble.  

Support 

 

 

Your bond with your significant other will remain strong as well once they know that you support them 100%. You can show that by accompanying them to doctor’s appointments, cooking meals that suit their diet, and improving your lifestyle in a way that your spouse can benefit from it too. 

Of course, you are welcome to feel frustrated with the situation at times. You are only human, and it’s not healthy to bottle up your negative emotions for fear of upsetting your lifetime partner. But the latter won’t get hurt as much as you assume when you communicate and continue helping out in every aspect possible. 

Having a chronic illness is extremely painful to deal with. Though the aches are mostly physical, every lousy day can depress you and make you believe in yourself less. Despite that, you and your spouse only need to hang on to each other for your marriage to endure even a recurrent disease. 

 If you experience a chronic illness/condition, with time and practice, you can make the adjustments necessary to establish a “new normal.” — Dan Mager MSW

 

 

 

The topic of illness makes most of us feel anxious and helpless. — Tamara McClintock Greenberg Psy.D.

When life gives you a health condition that you may never be able to outgrow, e.g., dysautonomia, and you are still unmarried, there are inevitably many thoughts that keep you up at night.

One of them is if you will ever find a good man or woman to date. In case you come across a nice fellow, you might worry about how he or she will behave once they know of your chronic illness.

Hopefully, it is below you to entertain the idea of hiding your disease, its symptoms, causes, et cetera, to a prospective lover. Things will become disastrous for you two once the other person learns about it, mainly if your decision puts your life in danger. In that sense, it will not be your illness that’ll push him or her away – it will be your lies.

Considering you are falling for a special someone, you have to inform this individual regarding your dysautonomia before making the relationship official. Here’s how you may do that.

 

 

1. Stay As Factual As Possible

Your objective is to tell someone that you have this form of dysautonomia, it does this and that to your body, and there is no cure for it at the moment. You may want to set your emotions aside and speak of everything that a specialist mentioned about the disease. This way, you can both be on the same page.

Chronic illness is an experience of continual unpredictability. From day to day, even from hour to hour, health can fluctuate dramatically. — Katie Willard Virant MSW, JD, LCSW 

2. Allow The Person To Process The Information

If your better half becomes speechless, it is best to give them space for a while. Though you may be dying to find out whether they are okay with the truth that you just dished out or not, you should understand that it will not be easy for them to accept in one snap that they are dating somebody with a chronic illness.

 

3. Get Ready For Their Reaction

From the time you choose to talk about dysautonomia with your special someone, you need to prepare for how that person will react. The ball already rolled in their court, remember? You cannot take back any fact that you spilled; rather, you should not try to do so.

If he or she calls you and still wants to be with you, then that’s marvelous! You hit the love jackpot, and you found someone who wishes to remain by your side in sickness and in health. In case you never heard from them again, then you ought to be grateful for learning about the shallowness of their liking for you early.

 

It can be especially upsetting and confusing to learn you have a chronic illness/condition. — Dan Mager MSW

To sum things up, it does not make you a baddie if your primary wish is to present yourself as a healthy individual to your loved one. Perhaps you are fearful for what the significant other may say, or you merely want to enjoy your days with him or her. However, how can your relationship be real when you deprive your special someone of the truth about your health condition? Furthermore, how will you know that he or she will be there during your lowest moments if you are unsure of what they are going to think about your dysautonomia?

Try to be upfront regarding the chronic illness as soon as you realize that the person will have an essential role in your life. Don’t wait for romantic feelings to grow before you do so; otherwise, it will stress you out too much.

Good luck!

 

Many chronic illnesses cannot be cured but can be managed in ways that allow those afflicted with them to maintain their quality of life. — Dan Mager MSW

How will you react after going through a series of blood tests only to find out that you have an autoimmune disease that even the best doctors cannot cure?

Accepting your fate may be the last thing to take place. You might talk to various specialists first, hoping to receive a different diagnosis. You might also look for holistic remedies nonstop and try every massage, therapy, or tonic that will supposedly improve your health condition.

In case your efforts turn out to be futile, that is when the hate can make its way to your heart. You despise your immune system for attacking you. You feel ill towards the doctors who have no long-term treatment to offer. It may not be an overstatement as well to say that you possibly hate your body just for being unhealthy.

Despite all those emotions you deserve to express, however, it is still not okay to keep a grudge against your body. If you are a victim of the illness, then so is your body. In fact, you need to learn how to love your B-O-D-Y now more than ever.

Avoidance regarding talking about illness was a familiar, yet still surprising aspect of my experience. — Tamara McClintock Greenberg Psy.D.

Avoid Pushing Yourself To The Extremes

The reality of having a recurring illness is that there are some challenges that you cannot face sheer determination since it will take a toll on your body. For dysautonomia patients, for instance, running a marathon may be quite impossible as their hearts already beat so fast even when seating still. For the ones with severe lupus, dieting may lead to frustrations because their weight might remain above the ideal number.

During these moments, you have to stop pushing yourself to do something that you know your system cannot handle. The result of that will not be pretty. Instead, merely focus on the stuff that you can do and function in moderation.

 

 

 

Take Care Of What You Eat

As tasty as your food choices may be, how sure are you that they are not contributing to the flare-ups that you deal with these days?

A diet high in sugar or fats, frankly speaking, is a no-no. It can sustain your energy for some time and raise your mood, but you may feel awful when you start gaining weight because of the sweets and burgers you devour. Stress is likely to come then, which is among the trigger factors of any chronic illness.

What you need to do is consider leaning towards the vegetable section of the supermarket often. Try preparing your meals too instead of depending on restaurants to make them for you. Furthermore, you may still have chocolates, ice cream, or greasy foods, but only if there is no other option.

I made it clear in my tone and body language that my chronic illness was a minor setback, a hiccup, a pesky footnote in the narrative of my life. — Katie Willard Virant MSW, JD, LCSW

Bonus: Surround Yourself With Optimistic People

Whenever it seems difficult to dig deep and find confidence in yourself due to the illness, you can always speak with individuals who have a positive outlook. Their motivation to stand up for themselves and go after their dreams can be contagious, and it will be awesome if they can infect you with their optimism.

 

 

Although you carry an autoimmune disease, it does not mean that your system is forever broken. You are whole. You have the right number of fingers and limbs, you can walk and run if you need to, and you are free to do anything your heart wishes. All you need to do is remember all the ideas above, and you are undoubtedly set for life.

Cheers!

 

I have been working with a lot of individuals who deal with postural orthostatic tachycardia syndrome (POTS) to know that many of them have gone to psychologists or psychiatrists first to diagnose the illness. Some of the symptoms related to it, after all, are known indicators of anxiety disorder. E.g., heart palpitations and dizziness. Despite that, there are more studies now that show that POTS is a real autoimmune disease, not a sign of a mental condition.

Being positive all of the time when dealing with illness is unrealistic. In fact, being excessively upbeat is sometimes linked with the denial of illness. — Tamara McClintock Greenberg Psy.D.

One investigation that has been published in Clinical Autonomic Research in 2014, for instance, has revealed that the visceral and somatic reflexes of people with POTS are no different from regular people. What it entails is that the palpitations that the patients may experience are not due to psychological reasons. The sensations have “organic origins,” as they say so that they may come from the central nervous system or internal organs. Nevertheless, some individuals merely deal with lightheadedness when they are standing up – and no palpitations at all – that’s why it remains difficult to make conclusions on the matter.

Another symptom that’s common among patients with POTS is brain fog. According to some experts from Vanderbilt University’s School of Medicine in 2015, many folks complain about mental clouding. In other words, they have trouble remembering, reasoning, recognizing, and sometimes even concentrating on things. Such a sign can be a source of stress, especially if a lot of people are counting on you to do your tasks well. Upon comparing the cognitive performances of healthy and non-healthy subjects, the researchers have gathered that there’s an obvious issue with their ability to process or pay attention to circumstances.

Now, the reality is that there is no known cure for any autoimmune disorder, including POTS. But if you can at least counter the mental-clouding symptom, that may make life a dozen times better for you. Here are some incredibly practical tips on how to improve your cognitive function now.

Talk To A Kid

I am pretty confident that I have not seen this technique mentioned in any other article yet. Nevertheless, it does not mean to say that it cannot help you mend your mind. Even though there are already kids who know more about life than they should, most of them still do not have an accurate perception of how the world moves. They tend to ask brilliant questions as well that can faze even a highly dignified person. Thus, if these children always throw out-of-this-world items at you, it may force you to think harder than ever and (hopefully) recalibrate your brain.

Understanding the patterns and determinants of your well-being is key to living well with chronic pain. — Deborah Barrett Ph.D., LCSW

Sing Your Heart Out

If there is one thing that I like the most in life, it’s the peace that I get when I am alone. However, even if I am not a fan of noise, I still can’t seem to concentrate on various tasks at hand when I am not singing or listening to music. There is a significant change in my recollection capability when I am singing because I get to memorize one whole science textbook, word for word when I am doing it. My friends and family always tell me that I am weird because of that. To prove that it is acceptable to sing my heart out to remember stuff, I have shown them a study related to it. It states that learning new songs increases the level of acetylcholine in the body, which lets us build new memories and retain the old ones. Try doing it every day and wow everyone around you when they see that you are not just an awesome person but an awesomely smart person as well.

Watch TV Shows More Often

Many adults forbid their kids – and themselves – to stay in front of the TV for more than an hour for fear of getting too much radiation from it. Although it is true if you merely keep a one-meter distance from the television, there are recent researches that confirm that children who watch TV all day long leave behind the others who are not allowed to attend the television in terms of academic standing. In my opinion, almost everything that you have to learn about life – from general to scientific knowledge – can be learned from the different channels that you can find there. So, if you are still cringing with the thought of sitting to watch TV, try it before you dismiss the idea.

Yes, I live with a disease that is not going away. It has changed and continues to change me profoundly. — Katie Willard Virant MSW, JD, LCSW

Final Thoughts

Kindly be reminded that the tips mentioned above are supposed to boost your cognitive function alone, not cure postural orthostatic tachycardia syndrome (POTS). The latter is something that you should receive treatment for from a specialist. What we merely provide here are practical ways to counter somehow the brain fog that you may experience due to the condition.

Cheers!

We all want the same thing for the people we love, and that is to care for them. We want to make them feel that we value their presence in our lives. At the same time, we also want the best things for them, which is why we also feel bad when they are suffering from any challenge or struggle with a problem. According to a journal on online therapy, the human person is always sensitive to the feelings of the people who matter in his life. As such, we must not feel shocked to find out that we usually have strong feelings for our loved ones.

Having data on what actually helps (and hurts) is crucial for living well with chronic pain because, unfortunately, acting from intuition or common sense sometimes worsens symptoms. — Deborah Barrett Ph.D., LCSW

Unfortunately, there are some bad days in life that you may share with your partner. In this article, our primary focus would be on the disorder named dysautonomia. It is a complication in a person’s autonomic nervous system or ANS. As a result, the individual who is suffering from this illness will experience some failures in his internal organs. Dysautonomia affects the blood vessels, intestines, heart, bladder and even pupils.

If your loved one is going through this disorder, it is best if you will make an effort to remain strong for the said person. Make sure that you show him that you are always there for him no matter what happens. Below is a list of the five ways to show how you can support your spouse or boyfriend in this challenging time of his life:

Maintain Good Communication Line

Never forget the importance of communicating effectively with your partner. Let him know that he can open up to you at any time of the day. He must not feel that you are drifting away from him because of his current health condition. Instead, show him signs that he can approach you anytime whenever he wants to talk. Be sure to be sensitive to all the things that you will tell him as he may get hurt easily.

In my experience, people struggling with illness want acknowledgement about how hard their situation is. — Tamara McClintock Greenberg Psy.D.

Never Blame Him

Stop looking for a reason to blame your partner’s condition. Never make the mistake of telling him the line “I told you so” when it comes to referring to his state. At the same time, do not say to him that his misery is a product of his mindset. Take note that he is going through a tough time and he does not need to hear your negativity. Instead, inspire him to keep going.

Spend Quality Time Together

Find time to bond with your partner who is suffering from dysautonomia. Do not let his sickness prevent you from having quality time together. It is highly recommended for both of you to take some time off from your usual activities and go for stuff that you can enjoy doing together. The advantage of doing this regularly is that you can maintain your intimate relationship with the other person. At the same time, getting his much-needed rest with the one he loves can also improve his mental health. As such, he may develop a better tolerance for his sickness.

Accompany Him In All Checkups

One of the basic things that you can also do to show your support to the other person is to accompany him in all medical checkups. If possible, cancel your appointments on the day when he is set to meet his doctor. He needs your moral support. Take note that you are the only person who can make him feel calm whenever he feels threatened and afraid by the symptoms of dysautonomia.

If almost half of us share this experience, why aren’t we talking about it? — Katie Willard Virant MSW, JD, LCSW

Make Him Feel Loved At All Times

Do not underestimate the significance of showing love and affection to the other person regularly. Your never-ending support to the one you love will be one of the reasons why your partner is going to fight the battle against the disorder. What you need to do to make him feel this way and to sustain such thought is to remind him every single day that you love him. You can also surprise him on certain days so that he can feel happy despite having the condition.

Remember that you are a strong person and you can get through this stage in your life. Just have faith that things are going to turn for the better when the time is right.

It can be trying for people who are ill when friends and family encourage patients to feel happy or optimistic. — Tamara McClintock Greenberg Psy.D.

The best and simplest way to understand the nervous system is its work with reflex actions. It is the junction between the conscious and subconscious mind. Therefore, any activity or task a person’s body has to do during the day that gets controlled by the nervous system is an autonomic function. With that said, the anxiety of knowing more about autonomic dysfunction gets explained in this article. 

The autonomic nervous system is a part of a nerve network that controls the body.  Its basic structure consists of the central control units located in the specific part of the brain and spinal cord responsible in the body’s vital organs automatic function without the need of a person’s subconscious thinking.  Examples of these processes are the narrowing of the blood vessels, monitoring the body’s temperature, and the non-stop beating of the heart. The nerves serve as the controlling unit of the brain and spinal cord to reach out with the other vital organs. 

 

Continue reading “Anxiety Over Autonomic Dysfunction: An In-Depth Explanation Of The Condition “

 

There have been current advances as well as the experience of doctors, the healthcare team, and family members when taking care of patients with Parkinson’s disease. They have revealed that autonomic problems play a crucial role in the evaluation of patients and that the signs and symptoms that present are sometimes the cause of disability. Symptoms seen in Parkinson’s disease include cardiovascular dysfunction, sweating, and gastrointestinal failure, among others.

Continue reading “Autonomic Problems In Parkinson’s Disease”

Being positive all of the time when dealing with illness is unrealistic. — Tamara McClintock Greenberg Psy.D.

Getting a diagnosis for Postural Orthostatic Tachycardia Syndrome (POTS) can undeniably be difficult news to accept. The blood that should be circulating all over remains on the lower half of the body. Whenever you stand up, your heart may always beat abnormally fast – 30 times or more – to provide oxygen to the brain. Worse, there is no cure for this condition at the moment.

Due to the setbacks that you might experience while dealing with this illness, it is likely for you to feel a lot of hate. For yourself – because you ended up with an incurable disease. For the doctors – because they cannot offer a long-term solution.

If you’re tired of being bitter, though, you can improve your mental health by doing any of the following:

1. Change Your Lifestyle

Off the bat, keep in mind that what and how you eat can immensely affect the illness. The basic idea is that decreasing your carbohydrate or protein intake while increasing the amount of salt or fluids you consume is great for your body. You should also get more sleep, exercise, and say no to alcohol.

2. Embrace Technology

Since POTS may prevent you from performing even mundane tasks like cleaning the house or going to a drive-thru place, you don’t have to feel guilty about embracing technology. Say, download an app or get the number of the restaurants you want to receive food from so that they can deliver it at your doorstep. You can look for robotic appliances as well that may be useful in and out of your home, including a mobility scooter.

 Every day patients walk out of our facility with a new lease on life. — Scott Dehorty MSW, LCSW-C

3. Learn About The Illness

It will also do you a lot of good if you start knowing more about POTS than what the specialists can tell you. There are excellent resources on the internet regarding the case studies and history of the illness that you can undoubtedly find after a few clicks. If that does not suffice, you may visit a local library to search for other learning materials.

4. Take Care Of Yourself 

Considering your hours often get occupied by work, family, or friends, you should realize that that is no longer acceptable after getting diagnosed with POTS. People with this disease are known to be extra sensitive to stress. When problems related to these areas occur at once, they may trigger your condition and keep you from functioning for days. Thus, it matters to make self-pampering your #1 priority all the time.

5. Volunteer

Similarly, you don’t need to be in tiptop shape to help. In case you have some money to spare, you can donate to charities that aid less fortunate patients, as well as to the research facilities that try to find a cure for POTS. On a good day, you may join a support group to offer a shoulder to lean or cry on to new patients or give them counseling.

Even your most wrecked moments become productive when they contribute essential data to your quest for improvement. — Deborah Barrett Ph.D., LCSW

Final Thoughts

A POTS diagnosis is not enough reason for you to think that life will become dull from that day forward. Millions of people out there have incurable diseases; many of them are even at the terminal stage of their illness. Despite that, they never get tired of believing that there’s something good they can do before passing. These people should serve as your inspiration to improve your mental health and be generally kinder to yourself.

 

 

 DYSAUTONOMIA IN CHILDREN

 

Dysautonomia is thought to afflict more than seventy million people worldwide. The disorder is caused by damage to the nerves that control involuntary body functions. These vital functions of which we remain largely unaware include blood pressure, perspiration, heartbeat, gastrointestinal processes and temperature control. They are all managed by the autonomic neural system, which when damaged, disrupts the messages between the brain and the body. The most common cause of damage to this system is diabetes, but it can be caused by viral infections and even by some medications. Better understand this condition, and learn how to care for your child while not overlooking what you need to take care of yourself, even if you need professional support & help.

I found it very interesting to learn that Autoimmune Disorders occur almost exclusively in developed countries. People in underdeveloped countries without our modern amenities like clean running water, washing machines, flushing toilets, and good healthcare don’t really experience these diseases. — Linda Walter LCSW

Continue reading “When Your Child Is Diagnosed With Dysautonomia”