“Just snap out of it!” “It could be worse!” “You are not trying!” “If you wanted to, you would be better!” “Think positive!” These types of statements are not very helpful to those who suffer with depression, but are statements that those with depression tend to face daily.
These types of phrases are common with family and friends to those suffering with depression. They are often made with kindness and with the intention of being helpful. Sometimes they come out of exasperation or from the pain and hurt one feels from seeing a loved one feeling depressed. However, these types of statements rarely seem to be helpful. Many with depression actually say that these types of statements make them feel worse and culpable – that they are counterproductive.
The neuroscience today provides a better understanding of why. Family, friends, and colleagues should be encouraged to look for alternative ways and measures to help an individual dealing with depression.
Depression, a state of, but not only, sadness
It is difficult for someone who is not dealing with depression to be able to place themself in the shoes, or understand the feelings, of someone who is. When we try to do it, the thoughts that naturally occur are those of sadness. However, depression is much more than just sadness… it can include the feelings of anxiety, hopelessness, fatigue… a lack of interest, psychological suffering, and low morale.
The negative effects and thoughts are often the most visible part of depression and probably the most “understandable” for society. In the same way people try and sympathize with those that suffer from a physical injury, people often try and sympathize with loved ones who suffer psychological pain, even when they do not understand the cause.
But depression is not only reflected in this excess of so-called negative effects. It also manifests itself in another aspect, which is equally frequent and serious: the lack of positive affects. Psychiatrists have a varied jargon to describe the different symptoms: anhedonia or the inability to experience pleasure, aboulia or the abolition of the will, and the inability to act or a feeling of numbness.
A feeling of low spirits is temporary, but not depression
When people often think of depression and its symptoms, it is common for people to think and remember when they felt a feeling of “low spirits” and periods of discouragement. These types of feelings can be a result from an overload of stress or painful news; however, fortunately, these symptoms, generally, turn out to be temporary.
In fact, when a few days of rest are not enough to get out of this state, loved ones are there to shake and push us to act or change our ideas. But during depression, ideas do not change on demand, as a result of a simple distraction or direction… nor do they change spontaneously. The term rumination, one of the symptoms of depression, precisely defines this inability to “change ideas,” this propensity to concentrate on the same negative thoughts again and again, to blame oneself for the same bad things. Very often, a person with depression is fully aware of their condition… that they are suffering from it, yet they are unable to change their mindset or outlook.
This second component of depression, the lack of positive affects, is not necessarily well treated by current therapies. Conventional antidepressants (including selective inhibitors of serotonin reuptake) appear to be more effective in most patients for treating the excess of negative effects, the first component, according to scientific literature.
A disease that affects the brain networks involved in motivation
The latest research in neuroscience suggests that depression is a also disease involving motivation, that is, it affects the brain networks involved in motivation. This suggests that telling someone who is suffering with depression to “make an effort” or “be more motivated” is just as absurd as telling someone with diabetes for his/her pancrease to “make an effort” or for someone who has broken his/her leg to “feel less pain.”
There are several ways in which a researcher can approach the mechanisms of motivation. Thus, it is possible to ask about its determinants related to genetics or the environment, its neurobiological foundations (at the microscopic level of a cell, its neuroreceptors, neurotransmitters), its cerebral bases (visible through imaging studies, at the cerebral area) or its cognitive mechanisms (related to the functioning of thought).
The team of Cognitive Neuroscience, Brain Motivation, and Behavior at the French Brain and Spine Institue (ICM) is studying this in patients. They use functional magnetic resonance or electrophysiology, taking into account prescription medications.
In this focus, motivation can be defined as the set of factors that determine the behavior of an individual, in terms of direction: choosing one action before another (e.g. preparing dinner instead of ordering a pizza) or in intensity: determining the amount of resources one assigns to an action (the amount of effort or time one devotes to an action).
A comparison between benefits and costs
When we have to choose between several actions and options, our decision is based on a confrontation between two opposing elements: on the one hand, the benefits (the rewards we can obtain) and the losses (those that we can avoid) and on the other hand, the costs (the energy and effort expended or required)
In this context, the notion of a reward can refer to a material good (an object, food, and even money) and to an intangible good (e.g. the pleasure of immersing oneself in a book or self-esteem from compliments). In the same way, costs can refer to both physical and mental costs.
This division into two categories of the determinants of our actions is probably reductive, even simplistic. But it allows for it to point out the origin of a disorder of motivation as part of one of these two main axes: either a decrease in sensitivity to rewards or losses or an increase in sensitivity to effort. These two mechanisms can likely coexist in an individual dealing with depression, in different degrees.
Take the example of a person who faces the action of going out to meet his friends in a restaurant. An individual suffering from depression may be unable to do so either because the prospect of reward is removed (the pleasure of being with loved ones), or because of the increasing cost of each of the actions required to meet his friends (the effort associated with making decisions, getting dressed, styling his hair, and traveling to the restaurant).
Each decision becomes a mountain to climb
Many individuals with depression express their difficulties in these similar terms: the slightest decision, the slightest action, become large mountains to climb. In fact, every time it is asked upon someone with depression to “try harder” or to do something that seems minimal, it is actually a large undertaking to them. Even if they do the action that seems minimal to us, like “just going to eat a restaurant,” it is such a huge effort for them that they won’t even be able to enjoy the accomplishment.
In recent years, several teams around the world have tried to measure these two aspects of motivation, in the general population or in individuals with a motivational disorder, such as depression.
What is at stake is so important that a series of arguments seem to indicate that the cerebral and chemical bases of each are different. When we calculate the value of the reward or the cost of effort, it is not the same brain regions, and probably not the same neurotransmitters, that are being exercised.
However, currently there is no validated way for psychiatrists to measure the weight of these two mechanisms in a patient in their daily practice. For the time being, these evaluations are limited to patients who have followed a research protocol and are only valid at the group level.
However, there is a strong possibility that these two main mechanisms of motivational disorders (such as depression) may require different therapeutic interventions, whether medications; brain stimulation, such as transcranial magnetic stimulation or electroconvulsive therapy; or psychotherapy. In the future, it will probably be possible to distinguish, in a loved one suffering from depression, which of the two mechanisms is involved…. until then, we should refrain from overwhelming those with depression with phrases aforementioned.
An Invisable Disease
Crohn’s and colitis are considered invisible illnesses because the diseases aren’t visible on the outside. So, while someone may look fine, their intestines may be inflamed and ulcerated, they may be in excruciating pain, and their immune system is essentially attacking itself.
Because Crohn’s and Colitis are invisible disabilities, some passengers may feel that they will be judged by asking a member of staff for help or having to spend time trying to explain their symptoms.
Imagine suffering from debilitating chronic pain. Every step you take causes discomfort, and it’s perpetually at the forefront of your mind. The internal battle you’re fighting takes mental and physical energy and just going through daily tasks can be debilitating. However, those looking at you may have no indication you’re suffering, let alone that you have a chronic disease. You suffer from an invisible illness.
WHAT IS AN INVISIBLE ILLNESS?
An invisible illness is one that does not exhibit externally visible signs or symptoms. Those with invisible illnesses and disabilities may have symptoms such as pain, fatigue, dizziness, weakness, or mental health disorders. Many of these conditions deeply impact the people suffering, but show no obvious signs to an outside observer.
By 2020, the US Department of Health and Human Services estimates that 157 million Americans will be afflicted with a chronic illness and the US Census Bureau estimates 96% of chronic illnesses are invisible. Invisible illnesses disproportionately impact women and many are not yet well understood by health care providers or the general public. This lack of understanding inevitably contributes to feelings of isolation and hopelessness for those suffering from such conditions.
CHALLENGES OF LIVING WITH AN INVISIBLE ILLNESS
In addition to the various symptoms of a chronic and invisible illness, people suffering from these illnesses can also experience frustration, guilt, exhaustion, and embarrassment.
For those diagnosed with an illness at a young age, the common stereotype that younger populations are supposed to be healthy makes it especially difficult. For those diagnosed later in life, many feel guilty they are unable to more actively participate in the lives of their families and be active with their children and grandchildren.
Invisible illnesses impact people in all aspects of their lives, personally and professionally. They can severely impact the ability to routinely work and may lead to social isolation and depression.
Nearly all of those experiencing an invisible illness have to deal with common misconceptions regarding their condition. Here are just a few of those most frequently dealt with.
- The way a person looks reflects how they’re feeling physically. Someone may look healthy, but that doesn’t mean they are.
- Invisible illnesses are ‘all in the person’s head.’ Keeping stress at a minimum may reduce symptoms of a chronic illness, but it doesn’t mean the root cause of the disease is psychological.
- Resting up will make people feel better. Just as people not suffering from chronic or invisible illness are unable to bank sleep (rest for a long period of time in order to recoup or “make-up” sleep or to expend extra energy), neither are those with chronic illnesses. The same amount of rest leading up to different events, on different days, may not yield the same results, as symptoms ebb and flow, often unpredictably.
- If a person suffering from a chronic illness is enjoying themselves, they must feel ok. Don’t assume a person who’s enjoying themselves, laughing, and participating in activities is symptom-free. Many people have learned to cope with their symptoms to participate in important events and activities, but that does not mean they are feeling well.
- Stress reduction techniques are a cure for chronic pain and illness. While these techniques may assist with symptom relief, they are not a cure-all.
- Being home all day is a dream lifestyle. Being home all day, but in constant pain and suffering from an invisible illness does not make for a dream lifestyle, regardless of location. Many people are often couch-bound or bed-bound due to extreme pain. They also experience boredom, as not being able to actively participate in the world around them can be frustrating and disappointing.
- Those in chronic pain are ‘drug seekers’. People in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain medication.
HOW TO SUPPORT OTHERS WITH INVISIBLE ILLNESSES
If you know someone with an invisible illness, there are several things you can do to support them. It’s important to remember everyone wants to enjoy life and no one wants to be a burden; however, people suffering from chronic and invisible illnesses do appreciate your support and understanding.
- Accept you are powerless to make them better. Your love and understanding are what they need.
- Take time to talk to them and learn about their illness. Ask questions about symptoms and treatments, and be patient. The more you learn, the better you’ll be able to understand and show empathy.
- Be with them when they need it and give them space when they want it. Many chronic illnesses become socially isolating, as people are house-bound or lose companions due to the lack of understanding around invisible illnesses. Being around and access may be one of the best support methods available.
- Try not to get frustrated. One of the biggest challenges associated with invisible illnesses is you get sick and then you continue to get sick, the cycle does not stop. At times, this may get frustrating to caregivers and it’s important for them to realize it’s normal for people suffering this way to be emotionally needy, distant, angry, or sad.
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Crohns Disease and bad weather
We know that Crohn’s disease can equal big gastrointestinal problems, but we don’t fully know what causes this condition. Genetics and the environment are thought to play roles, along with your body’s unique response to bacteria in your intestines. Another theory is a possible link between Crohn’s and the weather or climate where you live.
Researchers at Massachusetts General Hospital, who collected information on 175,912 women 15 to 30 years old, found that the incidence of Crohn’s disease increased significantly among those living in more northern latitudes. This was especially true for women in the older age range.
Experts aren’t sure what it is about Crohn’s and weather that could cause more cases up north, but one possible explanation is that there’s less sunlight or UVB radiation exposure in these areas, which in turn means that your body makes less vitamin D and doesn’t get as strong an immunity boost as it does in sunnier climes.
Another theory relates to health issues delineated by geography. “Generally areas farther from the equator are more developed countries, with lower incidences of gastrointestinal infections and parasites,” says Ghassan T. Wahbeh, MD, director of the Inflammatory Bowel Disease Program at Seattle Children’s Hospital and an associate professor of pediatrics and gastroenterology at the University of Washington School of Medicine. The theory is that in warmer areas closer to the equator, exposure to common GI bugs may mean the immune system is better able to fight off Crohn’s, “ in contrast to the unexposed gut immune system in cleaner environments,” he says.
Crohn’s and Weather: Putting the Forecast in Your Favor
Just as there’s no “one size fits all” nutrition plan for managing Crohn’s, there’s no ideal Crohn’s climate or geographic region that can rule out Crohn’s flares for everyone. Visit the online Crohn’s Forum, for example, and you’ll see that people’s experiences vary wildly, with some describing worse symptoms in winter and others saying summer heat causes them problems.
Individual experiences aside, however, there are some important warm weather Crohn’s tips to keep in mind, whether you live in the sun year-round or are planning a vacation escape.
“Staying in warmer climates mandates proper hydration, more so for patients with active disease and symptoms who are at risk of dehydration,” says Dr. Wahbeh. Kidney stones can also be a concern for people with inflammatory bowel disease and another reason to stay on top of your beverage consumption. On average, you should be drinking 80 or more ounces every day to stay hydrated.
Keep in mind that whether you’re experiencing bouts of diarrhea from Crohn’s disease or excessive sweating because of warm or hot weather, you’ll need to drink more water. Fever and vomiting can also contribute to dehydration. Signs to watch out for include dry mouth or mucous membranes, little or no urine or urine that’s dark yellow in color, a lack of tears, sunken eyes, and lethargy. There’s also the risk for coma in very serious cases.
People with an inflammatory bowel disease also have a greater than normal risk for skin cancer, according to Wahbeh. Experts aren’t certain how much of the risk is due to the disease itself and how much can be attributed to the side effects of the medications used to treat it. However, there’s no doubt that you should religiously apply a broad spectrum sunscreen and double up on sun protection by wearing wide-brimmed hats, sunglasses, and even clothing that can block UVA and UVB rays.
Living with Crohn’s disease has its challenges, but taking into account Crohn’s and weather factors, as well as following warm weather Crohn’s tips, living and playing in hot weather is certainly possible and perhaps even more pleasurable.
Wrap up stay safe and warm its going to be along 2021
all the best
Still Tired liveing with crohns
When my Crohn’s disease is active, my fatigue can be debilitating. Sometimes I’m forced to stop answering phone calls because I literally don’t have the energy to construct sentences. I don’t allow myself to drive because it doesn’t feel safe. I’m basically unable to do anything except the bare minimum, and when I come out on the other side I feel like I’ve been in the deepest fog.
How can I be so tired?
After experiencing fatigue like this on and off for quite a while, I began to wonder how I could possibly be SO tired. I was ‘sleeping’ ten to twelve hours a night and taking a nap during the day. What more could my body possibly want? I wasn’t working. I wasn’t moving much. In fact, I wasn’t using any more strength than necessary, and yet, it still felt like too much.
Anyone with IBD knows that when you’re sick, it often feels like more than just stool emptying from your bowels. It feels like life is emptying out too.
Fatigue and mental health
I found the fatigue contributed to my anxiety and depression, affecting my mental health too. It seemed like I was trapped in this awful cycle and all I could do is come up for air between episodes.
During that time, I took prescription sleep medication, I worked with a sleep doctor, and underwent multiple normal sleep studies. I even followed suggestions on reducing screen time, creating sleep hygiene and more, but no matter what, I felt exhausted all of the time.
Sleep versus rest
This was when I learned the difference between being asleep, and getting rest. Being in bed, tossing and turning, waking up during the night – they all impact our ability to achieve deep sleep cycles characterized by faster breathing, a faster pulse, and rapid eye movements, or REM. There were times that my body may have been unconscious, but it most certainly wasn’t at rest.
It became clear to me that I had to learn how to dedicate time to conscious rest when I was awake. To be honest, this felt awkward and like something I was embarrassed about. Have you ever sat down to do something like this?
Changes I made
There were three changes I made that over time have significantly impacted my levels of fatigue, and I’d really like to offer them as suggestions to anyone who is struggling.
- Scrolling through social media, even while laying in bed, doesn’t count as resting. When you brain is actively thinking about things you want, need, or are missing out on, it impacts your body’s ability to rest. Schedule in some breaks to put your phone down.
- Guided imagery and meditation are real things that relax your mind AND your body. I rely on the Calm app, but there are others out there as well which offer you these services right from your phone. Quieting your brain quiets your body in a real, lasting way.
- Aromatherapy – certain scents are tied to physical relaxation. Whether you purchase a linen spray, light a candle, burn incense or diffuse essential oils, or take a bath with bubbles or salts or bombs, aromatherapy draws upon the healing powers of the leaves, flowers, stems, bark, roots or petals of plants to stimulate the natural healing action of both your body and your mind.
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