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RA AND THE FAMILY FIT

LIFE WITH RHEUMATOID ARTHRITIS

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Living With Rheumatoid Arthritis

Living well with rheumatoid arthritis

RA- Fatigue The Battle Of A Life Time

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You wake up if you have the luxury of sleeping at all, try your best to get your day going but there is something holding you down, Fatigue. That thing that’s weighing on you like a ton of bricks, that thing that’s sucking your energy from you from your head to your toes. You can’t move no matter how hard you try, no matter how hard you will your body to get up and go. The bed at this time is your ally. You lay in it when you can’t move or when you reach for it for support when you stumble back as you try to stand up but find that you just can’t. Our fatigue is not just being tired, it is being exhausted. It is a feeling you can’t explain to others to make them understand. Fatigue, yes we’re all so familiar with it.

You try your best to move through the exhaustion but it’s much harder than you ever imagined. You wonder when did this all began. Finally you realize this disease Rheumatoid Arthritis snuck it in on you before you knew what happened. You see, standing at the sink brushing your teeth became a chore and that should be a simple thing to do. You stare at yourself in disbelief wondering is this really real and that body in the mirror staring back lets you know, yes you are that person so worn out and exhausted. Sleep isn’t the answer, resting isn’t the answer nor is relaxing the answer. Our body is fighting us and we just have to wait for it to fix itself even if it takes a long time or if ever. Fatigue runs rampant with this disease that we are fighting and living with.

We’re fighting fatigue and that battle is a hard one. It doubles the torture we face daily with Rheumatoid Arthritis. Through the pain we have to deal with comes the fatigue that is brought on by our meds and our bodies trying to protect us. We are grounded by these 2 more than anyone will ever really know. No one can imagine trying to carry on a day struggling against pain while not having the strength to do so. It does no good to wish for a work day or day to end and our night to begin because sleep is not the cure for our enemy Fatigue. The thing that wrings our bodies dry.

How does it feel to be too exhausted to think, I’m sure no one can imagine that. You really won’t know the answer to that unless you felt it, unless your walk has been in one of our shoes. You can barely move and you certainly can’t get your mind to focus to make yourself move so there it is, your whole body controlled by fatigue. It is awful to feel that you are useless because of a body that just can’t do what you want. All of this makes you feel guilty towards yourself and those in your life. Does this sound extreme!! Maybe to some but this is no exaggeration. Getting up and to have to lay back down in exhaustion is a cry that we cry many days. It is something that is a struggle at the simplest level and there’s no cure for us. We are saying yes but our bodies are saying I just cannot. So the fight to go is an ongoing fight, one that fatigue so often wins.

Fatigue: Extreme tiredness from mental or physical illness. “He/She was nearly dead with Fatigue”. Sounds familiar!!

Be Blessed.

RA-Rheumatoid Arthritis-A Warrior’s Fight

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PAIN, FATIGUE, MISUNDERSTANDING, MEDICATION, SLEEPLESSNESS AND FOGGY BRAIN

Rheumatoid Arthritis how do I handle what you’ve done to my life
You’ve dragged me down, almost drowned me with all of your inflaming strife

Still so much to learn but you have made me wise
Changing from day-to-day so many plans to devise

Day in and day out there’s depression and so much anger
Here I am crying, tossing and turning, fearing my life is in danger

I long for peace, quiet and rest for my roving mind
My body needs a break from the constant painful grind

I’m medicated so much sometimes I can’t even think
It makes me wonder will they ever find the missing link

I’m so worn out and I’m just too darn tired
And I don’t know what to do, I feel like my body is being rewired

My fight to stay strong is a fight every day
I’m fighting when I’m up and when I’m down and in every way

Some days I want to give up but I just won’t give in
How can I give up this fight and let you win

You’ve already stolen my time, my abilities and my joy
Also my family, friends and job you aim to destroy

I tried my best to head you off from the very start
But you’ve managed to hang on in your effort to tear me apart

So where do I go and what do I do
How do I sustain with a Monster like you

I guess I will continue to fight and do what I can
To control you Rheumatoid Arthritis and hope others understand

That this battle with you is harder than word can ever express
My weary mind and battered body can surely attest

To what it’s like to fight to stay ahead
With a disease like you that I face every day with dread

Though many don’t understand and many never will
How debilitating you are and how my life you managed to steal

Finally RA, I hate you with ever fiber of my aching being
But these words to you from me should be, but they aren’t very freeing.

Rheumatoid Arthritis our debilitating disease, one that so many people do not understand and do not know how much and how often we suffer.  This is our journey.

Be Blessed.

 

 

 

 

 

 

 

 

 

 

RA-Rheumatoid Arthritis, My Fate-My Foe

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I’ve lost my identity to Rheumatoid Arthritis.  Yes I see myself and I may look the same but in reality I’m not the same.  This disease has me asking “Who Am I” and how do I come to accept the person that disease has made me.  It’s hard but I will.  My Fate My Foe!! Continue reading “RA-Rheumatoid Arthritis, My Fate-My Foe”

RA – Rheumatoid Arthritis-Grieving For That Old You

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You look at yourself in the mirror, you may smile or you may break down and cry.  You smile because you may want to see yourself as you’ve always been but you may shed tears because you know that you’re no longer that person anymore and never will be again when it comes to doing all that you once could before Rheumatoid Arthritis came into your life.  That person staring back is not the person who you once were but a silhouette of  that person so you find yourself grieving for the “YOU” that’s lost to a disease that haunts you and those in your life in a way that you were never in a million years prepared for.  You hug yourself in an effort to reassure yourself that everything is going to be okay but in reality you know that your life is in for a tough go and it has been forever changed and will never be okay the way it use to be.  How quickly did this disease snatch your old life away and set in motion grief and guilt that weighs on you because you can’t live life the way you once could and the way you want too.  Where have I gone? Continue reading “RA – Rheumatoid Arthritis-Grieving For That Old You”

RA-Having Rheumatoid Arthritis-Listen Our Words Have Power

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Words have power but for us, those words can change who we are. As sufferers of Rheumatoid Arthritis it’s not always easy for us to put our feelings into words nor is it always easy to share what we’re going through each and every day. With this comes a myriad of emotions for why this is happening to us and why we wish this should never be.  Talking about our disease is never easy but being able to should never be the issue we have to deal with.  Why should we have to figure out a way make those in our lives understand that our disease is a real disease and not something in our head, something made up or something exaggerated.  It is a devastating life long auto immune disease that will always be a changing disease but can we keep trying to make people understand when their ears are closed, their eyes are shut and their minds are blank when it comes accepting to how this disease affects us. Continue reading “RA-Having Rheumatoid Arthritis-Listen Our Words Have Power”

RA – Rheumatoid Arthritis-Strength Our State of Being

force-2483944_640Rheumatoid Arthritis wears us out, it wears us down and it takes it toll but through it all we still try our best to be strong.  Strength for us is a form of Survival.  It helps us mentally to deal with our lives physically.  Yet there are those times when we feel like giving up but how do we stay strong in the throes of a disease that so often takes our “strength”, the very thing we need to keep us going.  Continue reading “RA – Rheumatoid Arthritis-Strength Our State of Being”

RA-Rheumatoid Arthritis-You Don’t Know

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Feeling the pain and fatigue, what do you do! What can you do! Does anyone really understand what it’s like to be a prisoner to a disease that will never let you go.  That disease, Rheumatoid Arthritis.

Take a look at us, we all have different looks.  Some of us look perfectly normal, some of us semi normal, some of us have deformities, some of with canes and walkers, some of us in wheelchairs and some of us even bedridden, so our looks with this disease comes with many faces.  Faces in pain, faces with tear stains, faces with fake smiles, faces of frustration, faces showing fatigue, faces of confusion, faces of loneliness and faces of hope.  There can be so much misunderstanding about what we should look like when we have a chronic disease but our faces may not tell our true story.

Do people really get that for many of us we may not have the physical disabilities but we are suffering with the aches and pains in our joints that leaves us bound to a life with painful movement causing us to stay in one place more than we want to.  Simply because our looks can be deceiving, we end up facing enormous backlash from those who tend to believe we are liars looking for sympathy playing games with an awful illness.  In reality seeing who we are may not show what we are “a person living in pain each and every day”.  A pain that cannot be measured in numbers because the levels sometimes don’t go that high.  A pain that you can’t describe because it’s not like anything you’ve felt before.  A pain that scares you so much but you’re even more afraid to share with those in your life because they just won’t understand or they might be afraid they’re losing you. This is what Rheumatoid Arthritis does to its victims. You just don’t know.

Is it understood what kind of sadness and depression we face daily because our abilities have been stolen from us.  Does anyone understand what it’s like being unable to live a normal life.  A life born to live to its highest but can be taken to its lowest by this disease we have, Rheumatoid Arthritis. We never knew we would be trying so hard to put one foot in front of the other while trying to figure out where that would lead us.  We know where we want to go and what we want to do but so many of our wants have been slowly ripped out of our lives.  The few times we may get lucky enough to do some of these things, we pay the price for it later.  Our bodies cry out in pain as we cry along with it.  We cry because we are happy we were lucky enough to do something we wanted but sad and angry because this is what our lives have come too.  Being unable to do simple things bring more pain because if you can’t do simple things then the harder things are simply a hope or a wish.  You just don’t know.

When people see us cry and ask why, it’s because we are so overwhelmed with everything that we’re going through.  Do they think we’re feeling sorry for ourselves, maybe we are sometimes, we are entitled.  The burden we carry each and every day is heavy and at some point we are bound to break.  The depression is real, the loneliness is epic, the isolation finds us hiding in rooms alone because explaining our tears so many times fall on unsympathetic and deaf ears.  People wonder why we fight this disease alone, it’s because many don’t understand it and don’t want to.  It’s not the crippling disease they’ve come to know, so for those who look okay to them, it’s a question of “what’s your problem”.  We all find ourselves alone sometimes dealing with this disease trying to figure out how best to function within and outside of our family.  We never want to be alone in this battle but we are and it’s no fault of our own.  Loneliness and isolation, You just don’t know.

Rheumatoid Arthritis, what is it?  Our definition: deceiving, devastating, unpredictable, uncertain,  forever changing, damaging, unrelenting, most hated, debilitating, life altering and most misunderstood.  True definition:  a chronic autoimmune disease in which the body’s immune system which normally protects its health is by attacking foreign substances mistakenly attacks the joints.  This is not a simple disease or temporary disease and it is not arthritis but one takes control of our lives and leads us down its path that it has for us.  Now we hope that you know and understand our journey just a little bit better.

Be Blessed.

 

RA-Because My Disease Maybe Invisible-Does It Make My Suffering Invisible

 

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When you see me, my fingers straight, I don’t limp, I don’t have the assistance of a cane nor am I in a wheel chair, so tell me what do you think.  Do I look perfectly normal to you!  Do I look as if I can do what any normal person should be able to do!  Well I can’t, you see my disease may be invisible but what I’m going through is real and just because you don’t see it doesn’t make it untrue.  Yes I may look healthy but I am truly suffering because you see my disease Rheumatoid Arthritis can’t be clearly seen. Continue reading “RA-Because My Disease Maybe Invisible-Does It Make My Suffering Invisible”

RA- I Have Rheumatoid Arthritis.

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When you look in my eyes what do you see
The light has dimmed, Rheumatoid Arthritis has taken over me

I have a disease with a confusing name
One that no one understands, no matter how much I try to explain

My life with RA is so completely Misunderstood
If I could explain it to you better, I surely would

If everyone would accept this is now how I have to live
Then their support and understanding they would freely give

It’s a life that I live because I have no choice
As loud as I speak and cry, I still have no voice

It has affected each and every part of my life
Yes, it is hard, so much toil and strife

Who I once was and who I am now
Is forever changed and I’m still trying to accept it but how

I want to go back to the way I use to be
But this dreadful disease just will not let me

Still I look in the mirror and I stare at myself
I ask what can I do, Lord what else

I’m doing all that I can to be at my best
Still it’s hard for me to relax and get needed rest

I hate you RA and what you have done
You have taken my life and made a run

You left me tired, worn and forever in pain
And struggling to accept that my life will never, ever be the same

I will always long to be free from this terrible disease
Because all I want is Understanding, Peace, Rest and to be at Ease.

From all of us suffering from Rheumatoid Arthritis, a disease that is so misunderstood.

Be Blessed.

photo credit:  kapa65/pixabay.com

 

 

 

 

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