A Letter to my Friends & Family...
Re: life with NEID’s (Neuro Endocrine Immune Disorders) - FM and CFS (Fibromyalgia and Chronic Fatigue Syndrome).
I am going to start off with an apology to you – I am sorry. I realize it may be hard for you to understand why things are so different for me now. I know I look the same, and talk the same, but these days I am waging an internal battle that affects all areas of my life ... physical, mental, emotional and spiritual.
You cannot see it - you just see me and on the outside I don’t appear to have changed. At first I tried my best to hide it from you. It is the reason I cancel lunches at the last minute or cannot attend functions I promised to go to, or why I leave events early. It is the reason I do not talk to you, or anyone else for that matter, as much as I used to. Don’t take it personally – it’s not you, it’s not anything you have done, please don’t be offended.
There are many things I no longer do, people I do not see, and places I no longer visit. You see - these days I struggle just doing everyday things like cleaning, cooking, reading, working, driving, shopping and all the little things in between ... all those day to day things we all take for granted.
Some days this illness takes all that I have and then it decides to take more. I can be fine one day ... and the next it hits me from nowhere. If you see me out and about and I look well - then that’s wonderful and a great day for me! Celebrate with me, but believe me when I say I’m not faking it when the following day I am too ill to get out of bed.
Every day it takes my all just to get up and out of bed, and some days I am not even able to achieve that. The pain, the stiffness, the fatigue - is overwhelming. Sometimes I feel like this for a day, sometimes two, sometimes weeks on end. I am always tired and in pain, both of these are now my constant companions - it’s just the severity and intensity that changes.
I may be tired but I cannot sleep. If and when I do sleep it’s either not for long or it’s all I can do - until I wake myself up crying out in pain. The only place I hurry to these days is the bathroom as often “need” comes on both urgently and unexpectedly. I always have a headache; my stomach always hurts; my bones always ache and my joints are always on fire. My muscles burn, tingle, cramp and twitch. I am tender and sore all over. I’m sorry but sometimes a well meaning hug will actually hurt not help.
Both my body and my brain have shut down. My internal thermostat is broken - I experience chilling shakes and soaking sweats. I have unrelenting brain fog – it’s called “Fibro Fog”. My short term memory is shot ... I am both forgetful and clumsy these days. I don’t move very fast these days. If you get stuck walking behind me – please be patient. I’m extremely sensitive to all sorts of things (MCS) – bright lights, loud noises, chemicals, smells, foods … the list goes on (and can change daily). I am depressed, anxious and I no longer cope with stress – in fact it can leave me incapacitated and is a major “Fibro-Flare” trigger.
To confirm what I have my doctors run every test imaginable to ensure they are all “clear” in order to make a positive diagnosis of FM/CFS … So this, I wonder, is how it feels not to have anything wrong with me? Amazing! As yet there is no clear diagnostic tool for this; and no cure – no-one really has much idea about it at all. To date, all that is known is that it may be caused by a retrovirus (XMRV) which alters our DNA and plays havoc with our immune systems, and there is no cure.
So this is my life with FM/CFS. I cannot change it, ignore it or wish it away. I have no choice – I’m just learning how to live with it, understand it and accept it. I am not asking for your pity, I don’t want you to feel “sorry for me” – I just wanted to help you understand this illness a bit better. Thanks for reading.
Now I am hoping you may be able to help me by raising awareness and educating others about these invisible illnesses. To assist you following are some details and helpful links that you might like to view.
Fibromyalgia and Chronic Fatigue Syndrome are part of a group of illnesses called “Neuro Endocrine Immune Disorders” (NEID’s) including: chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), fibromyalgia (FM), Gulf War syndrome/illness (GWS/GWI), multiple chemical sensitivity (MCS), environmental illness (EI), chronic Lyme disease, Alzheimer's, and autism.
CFS/ME and FMS are invisible diseases, largely unseen and unrecognised, despite the fact that they are far more prevalent than multiple sclerosis, cerebral palsy and muscular dystrophy combined. With those that suffer severely these illnesses are more debilitating than congestive heart failure or the late stages of AIDS. I cannot begin to describe the pain I experience. Child birth, gallstones or kidney stones are “walks in the park” in comparison.
It is estimated that as many as 10% of the population may suffer to some degree with CFS and/or FM but due to difficulty in effective diagnosis this cannot be confirmed. At least 5% is confirmed – that is 1 in 20 people so chances are you know some-one, other than me, with this/these illnesses!
While not “fatal” or “physically deforming”, it is estimated that our lifespan may be shortened by up to 25 years, due to either related or linked illnesses, complications, or suicide. Many sufferers are completely bedridden. For the moment, I struggle to maintain working and have had to cut back to part time work.
There are numerous websites and other online communities relating to these illnesses, without which, due to the isolation and lack of awareness, research and knowledge of our illness, many of us could not survive. Some particularly useful links include:
P.A.N.D.O.R.A. Inc - http://www.pandoranet.info/
CFIDS Assoc.of America - http://www.cfids.org/
Fibroduck – http://www.fibroduck.com
CFIDS and Fibromyaglia Self Help Site - http://www.cfidsselfhelp.org/
Again, thank you for your time, thank you for reading and thank you for helping me to raise Awareness.
Feel free to copy cut and paste as best suits your own needs.
Re: life with NEID’s (Neuro Endocrine Immune Disorders) - FM and CFS (Fibromyalgia and Chronic Fatigue Syndrome).
I am going to start off with an apology to you – I am sorry. I realize it may be hard for you to understand why things are so different for me now. I know I look the same, and talk the same, but these days I am waging an internal battle that affects all areas of my life ... physical, mental, emotional and spiritual.
You cannot see it - you just see me and on the outside I don’t appear to have changed. At first I tried my best to hide it from you. It is the reason I cancel lunches at the last minute or cannot attend functions I promised to go to, or why I leave events early. It is the reason I do not talk to you, or anyone else for that matter, as much as I used to. Don’t take it personally – it’s not you, it’s not anything you have done, please don’t be offended.
There are many things I no longer do, people I do not see, and places I no longer visit. You see - these days I struggle just doing everyday things like cleaning, cooking, reading, working, driving, shopping and all the little things in between ... all those day to day things we all take for granted.
Some days this illness takes all that I have and then it decides to take more. I can be fine one day ... and the next it hits me from nowhere. If you see me out and about and I look well - then that’s wonderful and a great day for me! Celebrate with me, but believe me when I say I’m not faking it when the following day I am too ill to get out of bed.
Every day it takes my all just to get up and out of bed, and some days I am not even able to achieve that. The pain, the stiffness, the fatigue - is overwhelming. Sometimes I feel like this for a day, sometimes two, sometimes weeks on end. I am always tired and in pain, both of these are now my constant companions - it’s just the severity and intensity that changes.
I may be tired but I cannot sleep. If and when I do sleep it’s either not for long or it’s all I can do - until I wake myself up crying out in pain. The only place I hurry to these days is the bathroom as often “need” comes on both urgently and unexpectedly. I always have a headache; my stomach always hurts; my bones always ache and my joints are always on fire. My muscles burn, tingle, cramp and twitch. I am tender and sore all over. I’m sorry but sometimes a well meaning hug will actually hurt not help.
Both my body and my brain have shut down. My internal thermostat is broken - I experience chilling shakes and soaking sweats. I have unrelenting brain fog – it’s called “Fibro Fog”. My short term memory is shot ... I am both forgetful and clumsy these days. I don’t move very fast these days. If you get stuck walking behind me – please be patient. I’m extremely sensitive to all sorts of things (MCS) – bright lights, loud noises, chemicals, smells, foods … the list goes on (and can change daily). I am depressed, anxious and I no longer cope with stress – in fact it can leave me incapacitated and is a major “Fibro-Flare” trigger.
To confirm what I have my doctors run every test imaginable to ensure they are all “clear” in order to make a positive diagnosis of FM/CFS … So this, I wonder, is how it feels not to have anything wrong with me? Amazing! As yet there is no clear diagnostic tool for this; and no cure – no-one really has much idea about it at all. To date, all that is known is that it may be caused by a retrovirus (XMRV) which alters our DNA and plays havoc with our immune systems, and there is no cure.
So this is my life with FM/CFS. I cannot change it, ignore it or wish it away. I have no choice – I’m just learning how to live with it, understand it and accept it. I am not asking for your pity, I don’t want you to feel “sorry for me” – I just wanted to help you understand this illness a bit better. Thanks for reading.
Now I am hoping you may be able to help me by raising awareness and educating others about these invisible illnesses. To assist you following are some details and helpful links that you might like to view.
Fibromyalgia and Chronic Fatigue Syndrome are part of a group of illnesses called “Neuro Endocrine Immune Disorders” (NEID’s) including: chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), fibromyalgia (FM), Gulf War syndrome/illness (GWS/GWI), multiple chemical sensitivity (MCS), environmental illness (EI), chronic Lyme disease, Alzheimer's, and autism.
CFS/ME and FMS are invisible diseases, largely unseen and unrecognised, despite the fact that they are far more prevalent than multiple sclerosis, cerebral palsy and muscular dystrophy combined. With those that suffer severely these illnesses are more debilitating than congestive heart failure or the late stages of AIDS. I cannot begin to describe the pain I experience. Child birth, gallstones or kidney stones are “walks in the park” in comparison.
It is estimated that as many as 10% of the population may suffer to some degree with CFS and/or FM but due to difficulty in effective diagnosis this cannot be confirmed. At least 5% is confirmed – that is 1 in 20 people so chances are you know some-one, other than me, with this/these illnesses!
While not “fatal” or “physically deforming”, it is estimated that our lifespan may be shortened by up to 25 years, due to either related or linked illnesses, complications, or suicide. Many sufferers are completely bedridden. For the moment, I struggle to maintain working and have had to cut back to part time work.
There are numerous websites and other online communities relating to these illnesses, without which, due to the isolation and lack of awareness, research and knowledge of our illness, many of us could not survive. Some particularly useful links include:
P.A.N.D.O.R.A. Inc - http://www.pandoranet.info
CFIDS Assoc.of America - http://www.cfids.org/
Fibroduck – http://www.fibroduck.com
CFIDS and Fibromyaglia Self Help Site - http://www.cfidsselfhelp.o
Again, thank you for your time, thank you for reading and thank you for helping me to raise Awareness.
Feel free to copy cut and paste as best suits your own needs.
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