Many Sarcoidosis sufferers are only too aware of the similarities between our condition and that of the cancerous condition called Lymphoma. Both present with similar symptoms like fatigue, muscle aches and pains, enlarged lymph nodes, loss of weight and loss of energy. In many cases it is not until a biopsy of the lymph nodes is taken that the doctor can make the diagnosis. We, in the mean time, along with our family and friends, are faced with the possibility of having the “Big C”.
When Sarcoidosis is diagnosed, it brings with it a confusing sense of relief with the attitude of… “Ah sure it could have been worse…”
When people ask me how I am, I feel… ”well I better not complain because at least its not cancer…” There are so few people who actually know about the seriousness of Sarcoidosis and the effect it can have on the different organs involved and the complications it brings to a sufferers life that sometimes its just easier to answer…“Yeah, I'm doing Fine “
Ever wondered what “Fine” means to someone with Sarcoidosis??
Well for me it goes something like this…
“F” represents the Fatigue I suffer daily without Failing, the Fight I must put up to muster the energy to carry out normal daily tasks that we all take for granted, the Forty winks I have to take to keep me going if I need to do anything ‘exciting’ like going to do the weekly shopping.
It stands for the Fake smile I put on when at times I just want to cry with Frustration,
For the Faulty Immune System I have that is causing all this Frenzy. And this Foreign life I am now living, Fuming that my Former Life is on hold…
“I” represents the Imbalance that’s now in my life because of the Illness, Inhalers I must take just to help with the shortness of breath, the Impact it has on my Identity, my Independence altering depending on the degree of the Muscle and Joint pains which varies from day to day.
Imagine the Idea of an Incurable Illness, treated by Drugs that leave you Immunosuppressed, which in turn renders you Isolated, Introduces you to Insomnia, leaving you Irritable and feeling like you are going Insane??
“N” represents the Nuisance things I must do, which are now Necessary for me to be “Normal”
the Negative Nonsense thoughts that leave me Nauseated and Numb
“E” represents the Enormity that this illness has had on my life, and the Effect of this Emotional roller coaster, the Expectation of Energy from the treatment I'm on which quickly Evaporates leaving me Exhausted again, the Emphasis on Eye Care, done in Earnest.
It stands for the Employment and Education which I Enjoyed and had to postpone, leaving me Empty and Envious. I wish I could Escape the Expectations of those who don’t understand the condition. Sometimes my own Expectations leave me feeling like I want to Explode.
Even though I know the condition won't last an Eternity; Sometimes I already feel ‘Enough is Enough’..
So next time you ask how I am doing and I answer “FINE”, you may have a better understanding of what it really means to me…
Its important not to forget though, that fortunately “F” also stands for the Family and Friends that are there by my side, keeping the fun things going, doing endless favors for me, considering my fears, helping me to keep the faith and look forward to the future, helping me to stay focused that someday, sooner or later, everything really will work out just ’Fine’.
When Sarcoidosis is diagnosed, it brings with it a confusing sense of relief with the attitude of… “Ah sure it could have been worse…”
When people ask me how I am, I feel… ”well I better not complain because at least its not cancer…” There are so few people who actually know about the seriousness of Sarcoidosis and the effect it can have on the different organs involved and the complications it brings to a sufferers life that sometimes its just easier to answer…“Yeah, I'm doing Fine “
Ever wondered what “Fine” means to someone with Sarcoidosis??
Well for me it goes something like this…
“F” represents the Fatigue I suffer daily without Failing, the Fight I must put up to muster the energy to carry out normal daily tasks that we all take for granted, the Forty winks I have to take to keep me going if I need to do anything ‘exciting’ like going to do the weekly shopping.
It stands for the Fake smile I put on when at times I just want to cry with Frustration,
For the Faulty Immune System I have that is causing all this Frenzy. And this Foreign life I am now living, Fuming that my Former Life is on hold…
“I” represents the Imbalance that’s now in my life because of the Illness, Inhalers I must take just to help with the shortness of breath, the Impact it has on my Identity, my Independence altering depending on the degree of the Muscle and Joint pains which varies from day to day.
Imagine the Idea of an Incurable Illness, treated by Drugs that leave you Immunosuppressed, which in turn renders you Isolated, Introduces you to Insomnia, leaving you Irritable and feeling like you are going Insane??
“N” represents the Nuisance things I must do, which are now Necessary for me to be “Normal”
the Negative Nonsense thoughts that leave me Nauseated and Numb
“E” represents the Enormity that this illness has had on my life, and the Effect of this Emotional roller coaster, the Expectation of Energy from the treatment I'm on which quickly Evaporates leaving me Exhausted again, the Emphasis on Eye Care, done in Earnest.
It stands for the Employment and Education which I Enjoyed and had to postpone, leaving me Empty and Envious. I wish I could Escape the Expectations of those who don’t understand the condition. Sometimes my own Expectations leave me feeling like I want to Explode.
Even though I know the condition won't last an Eternity; Sometimes I already feel ‘Enough is Enough’..
So next time you ask how I am doing and I answer “FINE”, you may have a better understanding of what it really means to me…
Its important not to forget though, that fortunately “F” also stands for the Family and Friends that are there by my side, keeping the fun things going, doing endless favors for me, considering my fears, helping me to keep the faith and look forward to the future, helping me to stay focused that someday, sooner or later, everything really will work out just ’Fine’.
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