Saturday, July 16, 2011

Mood- so-so

Health- so-so

Friends and family try to help... they try to find things that would help those with Gastroparesis or other Digestive Tract Paralysis conditions feel better. It is not unheard of to hear the following advice/helpful hints--

• "I found this great website that sells the cure for Gastroparesis!"

One of the hardest things for those suffering from chronic incurable conditions is the modern 'snake oil salesmen' filling the Internet with websites selling their own herbal blends that they swear cures everything under the sun. Do a search for "Gastroparesis Cure" and your browser will fill with site after site claiming to sell the miracle cure you are looking for.

The truth is that there is no cure... and sites like those only raise then shatter hope as well as empty your wallet. Those herbal blends *might* aide digestion, but they are untested and unregulated so the truth is that you have no clue what you are getting.

• "I have a friend who's cousin had that and they were cured"

There is always the cousin of a friend or a daughter of a neighbor out there that had exactly what you have and they are all better now... but like the friend of a cousin's neighbor of urban legend who saw Bigfoot, the cured person is never tracked down.

It is one thing to encourage and lend support to someone with an incurable illness and quite another to tell them that you have heard of someone with their condition that has been cured which you might think is 'hopeful' and might give them 'fight' but in all honesty it makes the person you are trying to encourage feel like they are in the wrong for not being 'cured'.

• "If you do not think about it so much it would not affect you so much"

You think that they are obsessing over it and if they just stopped thinking about it all the time they would not be bothered by it so much and might even forget that they have it. This is like telling someone that is paralyzed from the waist down that if they just ignored the fact that they had nerve damage they could walk.

Think the two have nothing to do with each other? Think again... Gastroparesis is nerve damage... it is damage of the Vagus nerve affecting the stomach. Not thinking about it will not make nerves regenerate and will not stop the symptoms of the nerve damage and the bodily process of impaired digestion.

• "If you pray for a cure you will be cured"

Often said to bolster hope and show faith, this one is both hurtful and insulting because it puts into question the level of a person's faith in their religion and suggests that they are lacking faith. Faith is often what people who follow a religion and have an incurable illness use to get through the day and rely on when times are at their hardest... it gives them strength to fight the pain and uncertainty letting them know that there has to be a reason and even if they do not know the reason they can rest easier knowing that there is a greater design at work. To question their dedication to their faith is to strip away one of their most powerful coping mechanisms.

• "Maybe if you ate healthy instead of all of that processed junk you would feel better"

Without knowing the reason behind what those with Gastroparesis eat or don't eat or believing them when they try to tell you (after all, we were all taught from a very young age in school the healthy foods needed in a proper diet) you decide that it is all from an unhealthy lifestyle. They need to eat fresh fruits and vegetables, whole grains, fiber and they need to exercise more and you are wondering if they are eating what they eat because they 'like' being sick and getting the attention.

People with Gastroparesis cannot digest fresh fruits and vegetables... they cannot digest whole grains or fiber because of the nerve damage to their stomachs. In a 'normal' stomach the nerves cause muscular contractions which grind the foods into a slurry and when that is done pushes the slurry into the small intestine where the body can extract the vitamins and minerals from the food. In a stomach with nerve damage the contractions are either weak or absent, meaning that the food will sit there for a much longer period of time, hours or even days longer than needed or healthy as the food breaks down in a decaying process (much as food left out in the heat will) and when the food finally empties into the small intestine it is not broken down properly so less vitamins and minerals can be extracted.

For this reason, those with Gastroparesis need to avoid fiber (which is hard to digest) and this means avoiding fresh fruits, vegetables and whole grains and opt for foods that are already processed (what many today call over-processed foods) in some way, foods that will break down easier and give a better chance that vitamins and minerals can be extracted. A common rule of thumb is that foods should all be soft enough to cut with a spoon easily.

As for exercise, many with Gastroparesis are suffering from malnutrition due to diet and the body's inability to extract needed nutrients from poorly digested foods and this leads to a lack of energy and other issues. They will try to exercise where and when they can, but often just getting through the day taps their resources and they just do not have anything left for any kind of exercise program.

As for wanting to stay ill just for the attention it brings... this is simply not the case at all and one of the most prevalent issues for people with any chronic illness is the isolation that comes along with it. Friends do not know how to handle it so they slowly fade away... family distances themselves out of resentment, fear or simply emotional exhaustion because they feel helpless to do anything that could help their loved one and just seeing them this way depresses them. The world of a person with a chronic illness is a lonely one and it is often only those that suffer from the same thing they do that they can turn to for understanding or support.

There are things that you can do or say that could let someone know that though you do not understand what they are going through (you would have to go through it yourself to fully understand it) you understand 'them' as a person.

1. Don't try to fix them... if they say they are feeling bad that day offer them a hug instead of a suggestion on how to feel better.
2. Tell them a joke... sometimes laughter really is the best medicine.
3. Learn more about their condition and don't be afraid to ask questions.
4. When you ask "how are you?" mean it.
5. Avoid saying things like "gee, you don't look sick" or "you look good today" because an Invisible illness is just that, you can't see how we feel. Compliments meant to make us feel better about ourselves can often unintentionally hurt.
6. Call before you visit, but please visit. We might not be up to a visit, so it is always better to call first.
7. Little things mean a lot... calling to make sure that there is something we can eat if we are coming to a function, clipping coupons for us if you run across any for things we use or need (like supplement drinks which are often expensive, sports drinks, tape and gauze, etc) or offering to pick us up if you are going to the store and going by our house anyway.

Just remember... words and actions can hurt, but they also can help.