People with Chronic Illnesses need Supporters

Today I am wearing one of my favorite shirts.  It simply says: All stressed out and no one to Choke.  But this is not really true I have a lot of people around me that I could choke.  But, their not the ones that stress me out.  In reality they already have to deal with me and probably would say that they are "choked" every once in awhile out of convenience.

See when you are sick and you have bad days the people that are around you are the ones that suffer the most.  Especially if you are going through a new change in the illness.  Because they live your illness and see you suffering and they want to take it away and they can't.

Sometimes it gets so hard that they can't take it anymore and you lose a few supporters along the way.  It is their way of dealing with it.  They really are so sad about how it is effecting the one that they love and care about.  A lot blame themselves for not being able to make their love one better.  Then there are others that just can't even except the fact you are ill.

Luckily for me I have a support group that goes way beyond my family.  I have friends that know when I am having a bad day in an instant.  I have been lucky enough to have physicians that understand.  My church has become a support group that I could not live without.  Lastly, I have a group on Facebook that give me a view of the outside and lift me up when I need a bit of encouragement.

Support groups like this help you make it through the day.  That don't try to push you to do more than you can.  Yet, they always encourage you to do as much as you can.  Those days when you feel like you are at the end they lift you up and make you say OK I will keep fighting.

If you are someone who is gong through the battlefield called chronic illness this is what I suggest.

1. Find one or two people that you can confide in.  You will know who those people are really quick. Most of the time they are the ones standing over your shoulder already that been there this far in the battle.  
2. Talk openly with your friends and family let them know how you really feel.  That is what they really want to know.  If you keep saying I am fine then they will never know when you are having a bad day.
3. Question the support of your physicians.  Now this sounds crazy but if they listen and are trying to do their best then trust them.  If you feel they are not listening then look some where else.  To be honest two years ago I did this.  My physician team I have is undoubtedly the reason I am alive and that is what they are therefore.
4. If you need professional help so that you can vent don't be afraid to talk to a therapist.  It s a hard battle fighting an illness that you can feel but others can't see.  Instead of venting to the ones that love find someone that can help you deal with it.  That is what they have gone to school for and sometimes you need that safe place to just let the steam off.
5. No matter what spiritual belief you have find a group you can share that experience.  It is amazing how much having this support can mean to you.  Believe it or not it also helps the spiritual group because they can see how their support has helped you.

Those that taken on role of supporter I have a few things I would also like to share with you.

1. Thanks for choosing to stand by someone that needs your support.
2. Remember you too may need to talk to a therapist yourself.  This just doesn't effect the person that is sick it is also effecting you.  Sometimes talking and letting out your frustration with a professional can help you support your love one more.
3. There will be days that we will push you away.  We don't mean to but sometimes it is our only way to deal with it.  Sometimes you think it is better to be alone.  So give us the little space but don't run we really want you there we are just scared.
4. You know us as well as we know us.  On the days that we feel good make us do something. Even if it is something small.
5. Lastly, remember what causes our bad days and avoid those outings.  For example:

• If our illness involves our digestive tract food outings are out of the question.  
• If we have vestibular issues things with too much stimuli may make our good days go bad quickly.  
• If we have problems with our hearing concerts and settings that are loud might not be the place to go if you want to talk.

Well calling it a night. Can't problem a blog every night but felt this one was very important.  Because I wouldn't be here if it weren't for those that were my biggest supporters.  

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.  

Quick Definition of Gastroparesis and Ménière's Disease

I have been thinking about doing this for sometime thanks to some encouraging words from a fellow soldier in the battle to spread awareness I finally took the plunge   Thanks Tanya for the final push.

For those of you that haven't heard of Gastroparesis or Meniere's Disease want to give a quick definition of each.  Don't worry I will go more into it on my feel good days or my can't sleep nights.

The most important thing for starters is talk to a doctor before you decide you have one of these  or any illnesses.  Everyone of  us that suffers has different symptoms and severity depending on what other illnesses we have.  Even if you only have only one disease I promise you they all act different from person to person and being classical isn't the norm,  it is the oddity.

Gastroparesis--simply put is a paralyzed stomach.  The stomach is suppose to contract to move food and other items (like medicine and fluids) further down the digestive tract.  Those with Gastroparesis have stomachs that do not empty as fast as they normally should.

There are different symptoms for me. I get full after eating just a little, nausea, bloating,  vomiting, and GERD (Gastroesophageal reflux disease).  This is an illness that people can't see.  It is often misdiagnosed as eating disorders or emotional problems.  Most physicians haven't heard of it and those that do have very few options to offer their patients.

 A lot of us like myself end up having surgeries to help with the symptoms.  For there is no cure for Gastroparesis.  Those of us fighting are trying to change that by pushing for awareness and research.  I know for myself I am fighting to stay alive until they find a cure, then I can die happy (what a oxymoron).

Other than the fact that there is not enough money put in the research for the cure.  There is another thing that is stalling the cure.  For many of us there is no known reason why we got sick.  Therefore we get labeled with idiopathic Gastroparesis.  If you knew what caused it you could stop it from happening, right?

Meniere's Disease-effects your vestibular system.  Simply put your balance and hearing are whacked out.  (I took the liberty to come up with this definition based on my own experience.)

Symptoms and severity vary from person to person.  My symptoms include a roaring in my right ear, loss of hearing, headaches, pressure in the ear, vertigo, dizziness and balance issues.  To explain how it effects me picture someone who drank too many beers and is stumbling and can't keep upright.  Got the picture in your mind.  Now add a cane (sometimes a walker) and take away the beers and you got me.

There is no known cure and the treatments are basically set up to help with the symptoms.  I like many started with diet and medications.  With one surgery behind me I am still struggling to find a way to end the spin as I call it.  

Similar to Gastroparesis no one knows for sure what causes it as so again I am labeled with another idiopathic disease which no one can physically see.


So there you have it for my first blog.   Hope it helps explain a little.  

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.