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Sunday, March 30, 2014

Chronic Illness Fatigue


My new phrase to describe those 2-6 hours in the middle of the night that all you want to do is sleep. Yet, your body is saying no. The brain gives up fighting eventually and you wind up wide awake dong anything to keep your mind off the sickness and your tiredness.  No wonder most people with chronic illnesses take an afternoon nap.  Our body and brain are non functioning and must be rejuvenated.

Let's break down this snappy new phrase.  Chronic is often seen as something that is persistent and advances over time.  This fits into the very soul of being chronically ill.  Your body and mind do not function within the same grid.  Your body experiences things like nausea, dizziness and pain.  While your mind suffers from lack of concentration, depression, and fatigue.  The body holds the innate body functions.  While the brain takes care of the rest. 

Yet, there are times that the bodies aches and pains override the functioning of the brain.  We are no longer able to separate the highly functioning brain from the chronic conditions effecting our body.  No matter how hard we try our brain finally gives in.  During those moments of Chronic unrest your mind forces you to be awake to deal with what is happening in your surroundings.  

Even though we do not want to have another nightmare.  We would love those few minutes of rest over what is happening in the real world.  What we would do to have a switch that we could use in the middle of the night to turn off our chronic conditions.  I am trying to work on that patent if you have any ideas please chime in.   Yet, since that switch doesn't exists our body wins out and our brain looses its battle of sleep.  Instead it must found something to keep itself free from the way our body feels.  Good thing this has auto check or you would see  how much my body s winning this battle tonight.

Illness is something that most people can grasp.  An illness is when your body is fighting something that t feels is invading it.  Yet, isn't there more to the word illness and how it effects our body.  I truly believe that everyday of every persons life there is some form of illness that they are battling.  Awe the conspiracy theory of the night.

Seriously speaking our body is exposed to illness both day and night.  Yet, there are some illnesses that rage a duel in our system continuously.  We can handle the sniffles, and coughs, the occasional pain from an injury.  We are able to fight these because they will come and go.  Now during the heat of the battle for a short moment our body feels like its all alone and is ready to turn n the gloves.  Yet it is in those moments that our brain kicks in and we eventually  kick the illnesses but.

Yet, what happens when everyday non stop your are sick.  The days you would pray for a short lived stomach bug. \Instead of years of nausea and pain.  The problem with illnesses is that they can make your whole immune system shut down.  A simple cold might take a few extra days to heal.   Yet, with an illness that goes on for a time can lead to more illnesses.  

I actually starting to believe insomnia effects so many who have other illnesses because our brain cannot handle more of the pain.  This illness will knock you eventually to the ground.  I haven't found a quick way to get over insomnia.  I do notice if i keep fighting to sleep i am unbearable to live with.  So my secret s just to give into the insomnia and set up until I  am tired.  Nothing like finding yourself at the table or in a chair our cold.  By allowing your body to sleep naturally it also controls the rest of  the aches and pains.  I am telling you now you can out fatigue your pan so you can sleep

Nice little segaway into the last topic fatigue.  When a body is sick it requires a lot of rest and relaxation.  Yet, even though our body requires a lot of rest to control its fatigue.  The brain is up and kicking what we are fatigued about.  We forget the need to rest and relax.  Our brain says lets get up and at it.  We can rest when the pain fades away.  Imagine letting your brain control your pain.  It might be thought to be the best.  Yet, what happens when it isn't your brain that needs the rest but your body.  How do we shut our self down so that we can sleep.  

My partner calls our dreams the garbage dump.  Which makes total sense we store so much stuff in our brain.  Yet, what happens when the garbage doesn't stop filling out.  I know for me I am more fatigued because my brain kept on going when  needed itself to just shutdown and rest a few minutes.

These are the few steps that I try to remember to get myself ready for sleep.  Start out by watching some stupid non interesting TV show.  Maybe some Lucille Ball a few minutes with the Adams family.  Secondly, when laying down make sure you have taken all of your medicine.  Compete your night rituals.  Nothing like almost falling asleep and realizing your glasses are on and your light is still on.  Your body could have called it a night but now you are stuck in  a conversation between your mind and body.  What else have I missed ?   Nothing like convincing your mind that the house will still be standing there in the morning.

If you have it listen very relaxing music.   I tend to listen to religion music an it helps me fall asleep. The last suggestion is for anyone that has a significant other.  Ensure them if they get up in the middle in the night that you sere not being critical of them rather you were be courteous.  Let them know that you are doing it for them as well as you.  In the morning that catch you in the other room you were not hiding from them rather trying to get your mind and body back on the same playing field.

I just realized my brain and body are caught up with each other for the night.  Quick spell check and off to bed.  If you suffer from Chronic Illness Fatigue the most important part is not to get mad at yourself ride out the wave for tomorrow might just be a better day.

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.

Saturday, March 1, 2014

The Good, The Bad and The Ugly

So as you can tell from my title this is going to be an update on how things have gone since my last post.

The Good --- still not blaming my body for my illnesses.  They have their own effect on my body.  So I am not mad any longer at myself because I am sick.  this has helped me a lot the last few months because it takes strength to say it's not my own action or body that caused this.

I would encourage everyone that reads this to take a moment from their day and say I am not at fault.  My body is not made me sick.  It was an illness that invaded my body and turned it upside down.  I will tell you now it will help change your mind.  So that you and your body can fight the disease as one united front.

Your mind plays a lot into how you handle the circumstances thrown at you.  If you stay positive you can accept things and not get angry.  Anger and madness make you turn your pain inward and outward.  Your family and friends become effected because they want to help but don't know how.  You shut down the world around you because you want this just to go away and it doesn't.  By being positive you allow yourself the opportunity to grow as a person and let others in.  Having an army with you makes this battle much easier than trying to be the lone martyr in the situation

The Bad-- Well I am still sick.  Having been spinning for a week now and cannot stop it at all.  The medicines seem not to be handling the spin and my balance is being really effected.  I see my ENT on the 12th  I think he may be able to do something even if it means increasing meds.  Menieres isn't fun but it isn't going to keep me from enjoying life.  It has taken alot and made me dependent on others for some basic needs.  But I am not stopping...I have friends and family on my side and my army grows each day.

The pacer to regulate my Gastroparesis seems to be acting out.  I am having pain where the pacer is.  It has a tendency to want to move all over my right side.  So I am taking my pain meds.  I saw my doctor in January and he said f I was still having problems at the next appointment it might mean a revision of the surgery.  I go the 10th can't wait.   Might seem crazy for some people but if it is surgery  am going through with it.  I have been having a lot more nausea this month than I was when pacer first went in.  So we will find out what is going on.  Last summer it just turned itself on its own.  Kind of worrying if that has happened again.

The Ugly -- several members of gastroparesis support groups that I am have passed away in the last month.  It is really frustrating to know that people are dying because doctor's just do not understand this disease.  It is not something that any of us want.  I am telling you right now the nausea and pain isn't in my head.  It is something I truly experience.

I feel that there should be a special program that all gastro physicians go through to teach them about digestive tract paralysis.  It is a shame that so many go undiagnosed for years.  When there is a simple test that can be used to determine the illness.

I also feel that the government should take some of its money and do research to find a cure.  I am praying that in my lifetime they will discover a reason this happens and why it effects people so differently.  I have been lucky not to have to be put on TPN or Jpeg.  Lets just say if the pacer stops that is the next step.  Not excited at all.

There also needs to be an awareness program set up for er docs and general practice and internal medicine specialist.  These are the people that see us first.  If they know about the disease they can help us find the right doctors.  I am lucky that my Internal medicine doctor knows about GP and also my Menieres Disease.  She helps me make it in between specialists appointments.  Don't know what I would do with out her.  By the way her appointment is the 26th.

So as you can see there are always a way to turn the negative into positive.  There are good days that we all have and we need to cherish those days.  There are also the bad days when we would rather sleep all day so we do not have to worry or be sick.  Then there are the ugly days when all control is not in our place.  the days when young and old loose their fight because know one has been able to stop this.

About all I can type today in the middle of a spin and need to go to bed.

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.