Today my appointment was with a nurse named Betty. We spoke about my health history briefly and she asked me what I like to do with my time. I told her I blog and am a part of a support group online, that I want to write a book, that I exercise regularly after starting the Gabapentin and that it took a very long time to get to a place of peace and positivity about my health. She said by reading my records it seems like I have come a long way (which begs me to wonder what the heck is written in those records?!) and that I am very positive for everything I go through. Writing that out makes me want to cry… Weep actually… In complete gratitude.
I don’t always feel strong and I have not always felt brave or positive or able to hold on to hope. Somehow I got here though. I told her it feels like it was very dark for a long time, and that once I started to face the reality of my sickness, I started to process it and come alive again. That it feels like one day I woke up and I was me again, but that it actually took a lot of tears and anger and depression and hitting emotional and physical rock bottom to get here.
At the end she hugged me and told me I made her day. That seeing my progress and my positivity made her so happy and that she was so pleased to meet me.
I feel flushed as I type that. Who am I? Just a woman. A woman with Fibromyalgia who definitely has bad days, who loses my cool at times (though hardly ever anymore which is a HUGE victory! Praise God!), who cries, who struggles, who complains.
I am just me. I don’t see myself as this brave person. Strong? Oh, yes. In life we have to be. But Fibromyalgia didn’t make me strong... it made me stronger than ever. My whole lifetime thus far and all I have been through has made me tough as nails. Loving those kids, learning from them, watching Simmy lose her mom and then her dad, raising Mylie, watching my family and friends preservere through their own trials… letting in all of that light and laughter and love… That is what makes me strong, what makes my whole life brilliant.
My God, who is capable and generous and all knowing... He could heal me right this second but oh! How He knew I needed to be humbled. Still need to be humbled continually! I needed Fibromyalgia to expand my heart, to widen my vision, to rebirth the dreams in my heart and to keep walking into my destiny.
It’s flattering to be complimented. I would be a liar if I said that was not true. It makes me feel good in my flesh, but more then anything it makes me so grateful.
Because Fibromyalgia IS hard and life can be hard, but somehow, some blessed, beautiful somehow… I have made it through the pitch black darkness and I am still standing here.
Thank you, my loving, brilliant God. For knowing my heart. For allowing me this sickness and the brittle, harsh season that came with it, so that I would learn… REALLY learn, that all I need IS you. Thank you for the friends who have supported me, even from afar. Thank you for prayer and the power behind words uttered in the secret places of a heart. Thank you for my chaotic, ever ready family. Thank you for blankets and pillows and heaters and books and Fibro sisters. Thank you for showing me beauty through extreme pain.
Thank you for showing me positivity.
I am so lucky and I cannot believe that this gets to be my life.
In good times I am blessed beyond measure. In bad times I am blessed even more. You break me down, shake me, get all that gunk out into the open. You perform open heart surgery on me everyday as I struggle with the weight of my own flesh.
I am in awe.
Thank you, thank you, thank you.
This life imperfect, fraught with trial and sickness… It is a beautiful mess and it’s all mine!
You let me hear the laughter of the child I love over the phone, you show me grace and maturity and depth in Simonnie, you let me witness and marvel at the women Maddison, April, and Antonia are becoming. You give me such marvelous friends and family and influences in everything, every day. You set me up to meet Betty today, and to speak with that lonely woman at the bookshop, and all of the other people you have already planned to bless my life with just by being in it.
A million thank yous will never, ever be enough.
Tonight I am quieted by Your fierce, undeniable love.
Please let me always be full of gratitude and let me always be teachable. Open my spirit wide, wide, wide to receive all that you are, my God, my King.
I want to relearn your love over and over and over.
These last few years could have been a horror story. For a very long time I thought it was. I was angry with you sometimes. I was so sad. I lost everything. Job, car, income, home, children, friends, identity, self-confidence, purpose, health. I came undone and you stitched me back together.
My horror story has led me here,
to this moment,
on this bedroom floor in a state I never thought I’d live in,
In front of this heater,
with my eyes dripping tears onto my pajamas,
realizing now that it was never meant to be a horror story. It was always going to be a tale of victory, simply because you are the Author of it.
Wow.
Thursday, December 6, 2012
Saturday, December 1, 2012
Feel like absolute crap today.
I've been pushing too hard and now the crash has come, weakening the limbs and clouding the brain so heavily with overwhelming fatigue.
The lights are off, save for one dim nightlight and I am in silence. Everywhere hurts. The exhaustion is something fierce that cannot be conveyed with words.
I hate Fibromyalgia.
I've been pushing too hard and now the crash has come, weakening the limbs and clouding the brain so heavily with overwhelming fatigue.
The lights are off, save for one dim nightlight and I am in silence. Everywhere hurts. The exhaustion is something fierce that cannot be conveyed with words.
I hate Fibromyalgia.
Saturday, November 17, 2012
60%
Sometimes the pain and fatigue are really just THAT bad, and it takes some time to charge the batteries again. I've been so active lately, and I am darn proud of it! I think back to 3 years ago, and even just months ago and so much progress has been made. I believe the most pivotal transformation started to happen once I accepted and understood that I was not working to be cured. Suddenly I started to make steps to have a livable life, right where I was at.
Truthfully, the VERY most important thing in having my Fibromyalgia managed, is the constant knowledge that I can cover all of my bases and still have days where I can barely move, where I will feel miserable by no fault of my own, that I DO have an illness, that I do what I can. Getting that, living that... it enables me to enjoy my life in a way I hadn't in years. I have stopped beating myself up about it, for the most part, and that really frees me up to expend energy on other things.
Sleep is the absolute best medicine, staying in a routine with all of the medications, and riding my bike have really fueled a sense of well-being. Over a year ago I made the most difficult decision of my life thus far, and moved away from my hometown and the little child I love more than anyone. I went through a deep, dark night of the soul and cried, crawled, and scrambled my way out of the pitch black and into the light. God, forever my staple, forever my refuge, forever my focal point. Even when I wanted to give up and let the Fibromyalgia just have it's way, Abba did not let me linger in misery for long. He gave me such gifts in the people and life around me. He set me upright and trailed my palm with His... I followed, eyes swollen from the tears, and heart heavy from immense heartbreak.
And slowly, so very slowly, the sunshine crept in. And now my quality of life, though I am still very sick, is about 60% better than even 6 months ago. 60%. I still struggle everyday, I still have moments of frustration, and I definitely have annoyance, and yet... 60%.
That amount allows me to sit at the dinner table (with earplugs of course) with my family, enables me to ride my bike at least 5 times a week, gives me self-discipline to stop eating the sugar that is the #1 enemy of Fibro, allows me to do load after load of laundry, run errands, drive a car, go out places alone, see movies, and focus on my writing more. It allows me to dream about future plans- writing, spontaneity, travel, and always adventure.
In no way am I saying I am fixed. I still have to pick and choose. I still get drained after a quick outing. I still feel overwhelmed by sounds and touch and bright lights. I still have to be very careful with what I do everyday. I still have pain 24/7 and fatigue presses on me constantly. I still feel sick. The beautiful thing is that facets of my personality that were buried have been resurrected and I am walking in my dreams again. I no longer carry that persistent anxiety and sadness. That fear to be out in public, that sadness at not being able to do what I used to do. I quite like this new me- healed emotionally & newly brazen as my old confidence has come back drop by drop. I am no longer afraid, of neither what is going to happen to me with Fibromyalgia, nor what anyone thinks about me. I feel more alive than I ever have.
I think some of that has to do with age. Truly, the 30's are not to be dreaded. I feel more secure in my own skin then I ever have. I own it. I listen to my body. Oddly, I thank Fibromyalgia for some of that. It's taught me to be disciplined, though for the first years of it I kicked and screamed. ;) And some of it is because of the people in my life. I am truly blessed in this world with very amazing, brave, bright spark plugs of human beings! I don't know that I would have ever seen or known the brilliant beauty of the human soul without experiencing sickness. No other trial I've endured has ever stripped everything away like sickness has. In the stillness of agony, my eyes have been privy to see the most beautiful things in everything absolutely ordinary. And much of the healing comes from God. My holy, generous, beautiful, illuminating God.
So while I still have days where I lay on the floor in front of my heater, unmoving... tears of frustration, bad moods, boundaries, having to say no, feelings of guilt that swell... I also have days of bliss. Pain free? No. But lovely... oh so very, very lovely and right and full of cherishing promise.
Who am I to have won such a glorious life? Riddled with pain and trial and turmoil, and still also, joy and laughter and so much love?
"When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.
But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul."
-Horatio G. Spafford
You did it: you changed wild lament
into whirling dance;
You ripped off my black mourning band
and decked me with wildflowers.
I’m about to burst with song;
I can’t keep quiet about you.
God, my God,
I can’t thank you enough.
Psalm 30:11-12
Love,
Janet
Truthfully, the VERY most important thing in having my Fibromyalgia managed, is the constant knowledge that I can cover all of my bases and still have days where I can barely move, where I will feel miserable by no fault of my own, that I DO have an illness, that I do what I can. Getting that, living that... it enables me to enjoy my life in a way I hadn't in years. I have stopped beating myself up about it, for the most part, and that really frees me up to expend energy on other things.
Sleep is the absolute best medicine, staying in a routine with all of the medications, and riding my bike have really fueled a sense of well-being. Over a year ago I made the most difficult decision of my life thus far, and moved away from my hometown and the little child I love more than anyone. I went through a deep, dark night of the soul and cried, crawled, and scrambled my way out of the pitch black and into the light. God, forever my staple, forever my refuge, forever my focal point. Even when I wanted to give up and let the Fibromyalgia just have it's way, Abba did not let me linger in misery for long. He gave me such gifts in the people and life around me. He set me upright and trailed my palm with His... I followed, eyes swollen from the tears, and heart heavy from immense heartbreak.
And slowly, so very slowly, the sunshine crept in. And now my quality of life, though I am still very sick, is about 60% better than even 6 months ago. 60%. I still struggle everyday, I still have moments of frustration, and I definitely have annoyance, and yet... 60%.
That amount allows me to sit at the dinner table (with earplugs of course) with my family, enables me to ride my bike at least 5 times a week, gives me self-discipline to stop eating the sugar that is the #1 enemy of Fibro, allows me to do load after load of laundry, run errands, drive a car, go out places alone, see movies, and focus on my writing more. It allows me to dream about future plans- writing, spontaneity, travel, and always adventure.
In no way am I saying I am fixed. I still have to pick and choose. I still get drained after a quick outing. I still feel overwhelmed by sounds and touch and bright lights. I still have to be very careful with what I do everyday. I still have pain 24/7 and fatigue presses on me constantly. I still feel sick. The beautiful thing is that facets of my personality that were buried have been resurrected and I am walking in my dreams again. I no longer carry that persistent anxiety and sadness. That fear to be out in public, that sadness at not being able to do what I used to do. I quite like this new me- healed emotionally & newly brazen as my old confidence has come back drop by drop. I am no longer afraid, of neither what is going to happen to me with Fibromyalgia, nor what anyone thinks about me. I feel more alive than I ever have.
I think some of that has to do with age. Truly, the 30's are not to be dreaded. I feel more secure in my own skin then I ever have. I own it. I listen to my body. Oddly, I thank Fibromyalgia for some of that. It's taught me to be disciplined, though for the first years of it I kicked and screamed. ;) And some of it is because of the people in my life. I am truly blessed in this world with very amazing, brave, bright spark plugs of human beings! I don't know that I would have ever seen or known the brilliant beauty of the human soul without experiencing sickness. No other trial I've endured has ever stripped everything away like sickness has. In the stillness of agony, my eyes have been privy to see the most beautiful things in everything absolutely ordinary. And much of the healing comes from God. My holy, generous, beautiful, illuminating God.
So while I still have days where I lay on the floor in front of my heater, unmoving... tears of frustration, bad moods, boundaries, having to say no, feelings of guilt that swell... I also have days of bliss. Pain free? No. But lovely... oh so very, very lovely and right and full of cherishing promise.
Who am I to have won such a glorious life? Riddled with pain and trial and turmoil, and still also, joy and laughter and so much love?
"When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.
But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul."
-Horatio G. Spafford
You did it: you changed wild lament
into whirling dance;
You ripped off my black mourning band
and decked me with wildflowers.
I’m about to burst with song;
I can’t keep quiet about you.
God, my God,
I can’t thank you enough.
Psalm 30:11-12
Love,
Janet
Tuesday, November 6, 2012
Hello Cool November
It's very, very cold today! I LOVE it, but we all know Fibro is not down with the chilly weather. So, today (more than ever) I am grateful for portable heaters and hot beverages.
It's always strange to be out in the "real" world. I feel like an alien as I watch people interact, and listen to the faint sounds of chatter through the ever present earplugs. It's odd to think of life before Fibro... to remember that I was once a busy bee and that I never once thought twice about interacting or being out in public. It's pleasing to know that I no longer feel afraid to be at someplace like Starbucks. For so long I kept to myself when I had to be out in public. It was strictly fight or flight at all times. No exaggeration. I could have a meltdown of epic proportions just by simple things. There was no one trigger for a panic attack or anger, like the time I muttered some choice curse words at an unsuspecting Safeway employee. The poor thing.
It's been a good year, and I do not say that lightly. I still have Fibromyalgia. I still loathe the medical system. I still have a lot of not so comfortable days in my own skin, BUT as I was reflecting over 2012, I realized that this has been a year of finding my balance.... both in learning to accept my illness and in adjusting after the cross country move. 2010 & 2011 were both so fraught with panic and no answers, and infection after virus after ailment after stress. Yup. I was walking around in darkness, desperate for a good doctor, an official diagnosis, and a way out of the nightmare.
Now, I can say I am no longer full of devastation and turmoil. I have my happy back, and it meets with the joy that was waiting this whole time and my spirit dances.
I am still sick. I still desire a good doctor. I still wonder about my future.
But I am now able to do small things to give me my independence back. A long drive. Reading good books. Baking cookies. Thinking about taking a class or two online next semester or the one after that. Writing. Riding my bike almost every single day, and craving it like mad when I don't.
And even though sickness still invades my body, I feel more alive.
Cheers to this year of intense self-examination and immense growth. It sure as hell didn't happen overnight, and the grumpies still come around occasionally, but with some really hard work I dare say I have come to manage my Fibromyalgia.
For a long time I think I was expecting to be cured, and when I started to understand that wasn't going to happen, I expected to just be better... well enough to be like how I was before... until eventually I started to appreciate who I was becoming. Sometimes I feel tricked... I'll wake up feeling pretty good and I'll think maybe, just maybe it went away. It never does. I have come to understand that as best as I can, and I look forward to what this next year brings.
It's pretty exciting. ;)
It's always strange to be out in the "real" world. I feel like an alien as I watch people interact, and listen to the faint sounds of chatter through the ever present earplugs. It's odd to think of life before Fibro... to remember that I was once a busy bee and that I never once thought twice about interacting or being out in public. It's pleasing to know that I no longer feel afraid to be at someplace like Starbucks. For so long I kept to myself when I had to be out in public. It was strictly fight or flight at all times. No exaggeration. I could have a meltdown of epic proportions just by simple things. There was no one trigger for a panic attack or anger, like the time I muttered some choice curse words at an unsuspecting Safeway employee. The poor thing.
It's been a good year, and I do not say that lightly. I still have Fibromyalgia. I still loathe the medical system. I still have a lot of not so comfortable days in my own skin, BUT as I was reflecting over 2012, I realized that this has been a year of finding my balance.... both in learning to accept my illness and in adjusting after the cross country move. 2010 & 2011 were both so fraught with panic and no answers, and infection after virus after ailment after stress. Yup. I was walking around in darkness, desperate for a good doctor, an official diagnosis, and a way out of the nightmare.
Now, I can say I am no longer full of devastation and turmoil. I have my happy back, and it meets with the joy that was waiting this whole time and my spirit dances.
I am still sick. I still desire a good doctor. I still wonder about my future.
But I am now able to do small things to give me my independence back. A long drive. Reading good books. Baking cookies. Thinking about taking a class or two online next semester or the one after that. Writing. Riding my bike almost every single day, and craving it like mad when I don't.
And even though sickness still invades my body, I feel more alive.
Cheers to this year of intense self-examination and immense growth. It sure as hell didn't happen overnight, and the grumpies still come around occasionally, but with some really hard work I dare say I have come to manage my Fibromyalgia.
For a long time I think I was expecting to be cured, and when I started to understand that wasn't going to happen, I expected to just be better... well enough to be like how I was before... until eventually I started to appreciate who I was becoming. Sometimes I feel tricked... I'll wake up feeling pretty good and I'll think maybe, just maybe it went away. It never does. I have come to understand that as best as I can, and I look forward to what this next year brings.
It's pretty exciting. ;)
Saturday, November 3, 2012
Friday, November 2, 2012
Oh, Okay....
The way people in the medical field treat people with Fibromyalgia astounds me.
This is not a new thing by any means. I am not the only one who has faced prejudice about illness because of my age, and because many "professionals" do not have accurate information regarding Fibro. Yesterday I had to go see a Rheumatologist because I was referred from my primary nurse, and it is necessary for my pending SSI/Medicaid case.
I didn't have high hopes even though this doctor supposedly specializes in Fibro and Osteoarthritis (which I have). Whenever I have an appointment with a new doctor the anxiety and dread amps up, even when I am not consciously thinking about it. After being to dozens of doctors and being treated like an insane person over and over, getting discouraged and crying my eyeballs out, I finally decided awhile back that I do not give one fig about what these people say to me, unless it is beneficial and edifying. The trouble with having this illness is that it is so not understood by the powers that be. Much in the way that other illnesses were treated with contempt before they were understood (MS, depression, bi-polar,etc.) so is Fibromyalgia. The truth is that we, the patients, have to search high and low for concrete answers and we honestly do not have one solidifying one. Instead we have various possibilities and contributors and hundreds of skeptics. It's madness.
Case in point, I go to this appointment, wait 45-60 minutes, and as soon as the doctor comes in she asks what she can do for me. I start talking, she cuts me off repeatedly, thwarts every question I have about diet, exercise, pain medication, my current regime, weight gain... She basically told me she can't do anything for me, that I am too young to have Osteoarthritis (to which I replied, "how do you think I felt at 29 years old being told I have the back of a 65 year old woman and that I couldn't continue in my current profession?"). She grilled me about how I received the diagnosis, patronized me when I told her it took me a few years to get to a functional place, where I can exercise again and have a semi-normal existence. I told her I am looking for a doctor who believes in me and who will work with me to manage this disease. She asked, "the important thing is do you believe in yourself?" Well no freaking duh lady! But you are the one with the prescription pad and the authority for my Medicaid case. Anyway...
So she is in the room for all about 5 minutes. No exam, no looking through my medical paperwork at all. She tells me to come back in 6 months. I stopped her, and said I wasn't trying to be snarky, but what was the point of coming to see her, paying out of pocket when she didn't do anything? She said there was nothing she could do.
REALLY?!
A Rheumatologist who specializes in Fibro can do nothing for a Fibro patient?
She made a half-hearted attempt to press my tender points. Looked disinterestedly through my paperwork. She said she doesn't deal with viral infections, would not test me for autoimmune issues because she didn't think I had Lupus. I explained family history of Lupus and MS, my own positive and negative autoimmune results. Asked her if she could check my ear because I get frequent earaches and a lump on my neck that lives there. She told me I had to have my primary check those things out.
Excuse me, but what the hell is a specialist for? Especially paying out of pocket????
I left, got in the car, and cried. Not in self-pity, not in depression, but in anger. For myself, and for all of those out there dealing with any illness who are dismissed by medical professionals. I can guarantee if I were a damn Kardashian I could probably get an MRI for a hurt pinky, with a prescription for unlimited pain killers. Money rules. Going to appointments like this reminds me of how it used to be... when my body was falling apart bit by bit, and there were NO answers at all. When I would bleed and ache and fight to make it through each day, and no one would help me or take me seriously. Sure, now I can ride my bike 5 times a week, I can go to a movie, or chat on the phone a bit... but oh, what it took to get here.
This is not the first time I have had to deal with someone being rude to me because I am young and because I have an illness that astounds them. Honestly, I think a lot of it has to do with their own pride. If they can't fix us they don't want to deal with us. It's so infuriating! Rheumatologists are starting to deny Fibro patients because it is seeming to be Neurological in origin, yet Neurologists are not yet taking us on, so we are just floating in the abyss of sickness.
It makes me utterly grateful that I was able to go to the Fibro clinic in California. If I hadn't researched on my own online, I never would have known that was an option and I wouldn't have gotten all those blood tests done, revealing the viral infections and other hidden issues contributing to the Fibromyalgia. I never would have gotten started on supplements, and I would still be in the dark.
I feel grateful that I know which medications to take for my particular Fibro cocktail. I am glad to have carved out a functional lifestyle, albeit extremely limited, after scrambling around like mad for years, driving myself into the ground. It took a long time and extreme effort to climb out of depression and into acceptance! But it is not enough for me to be "managed." What about my friends who are treated like loony bins? What about those who do not have access to free health care? What about those of us who are still treated like we are crazy, like Fibro is all in our heads?
I pray for the day when we will be taken seriously. When people stop saying all we need is exercise and a good diet. When doctors HAVE to believe us. When our age is no longer a reason we are discriminated against.
When I was getting treatment at the Fibro clinic my doctor told me, "You are not crazy. This is NOT in your head. You have a real disease and it will take some hard work and a lot of time to get it managed."
Managed, not cured.
There is no cure as of yet.
But we can learn to live with it.
I'd like to remind you that you are not crazy. You have a disease. It is not in your head. You are not alone.
Out of the dozens of doctors I have seen, there are probably only about 3-4 that have taken the time to get to know me and who have taken the time to help me.
It's a shame that most doctors are unqualified for their jobs.
This is not a new thing by any means. I am not the only one who has faced prejudice about illness because of my age, and because many "professionals" do not have accurate information regarding Fibro. Yesterday I had to go see a Rheumatologist because I was referred from my primary nurse, and it is necessary for my pending SSI/Medicaid case.
I didn't have high hopes even though this doctor supposedly specializes in Fibro and Osteoarthritis (which I have). Whenever I have an appointment with a new doctor the anxiety and dread amps up, even when I am not consciously thinking about it. After being to dozens of doctors and being treated like an insane person over and over, getting discouraged and crying my eyeballs out, I finally decided awhile back that I do not give one fig about what these people say to me, unless it is beneficial and edifying. The trouble with having this illness is that it is so not understood by the powers that be. Much in the way that other illnesses were treated with contempt before they were understood (MS, depression, bi-polar,etc.) so is Fibromyalgia. The truth is that we, the patients, have to search high and low for concrete answers and we honestly do not have one solidifying one. Instead we have various possibilities and contributors and hundreds of skeptics. It's madness.
Case in point, I go to this appointment, wait 45-60 minutes, and as soon as the doctor comes in she asks what she can do for me. I start talking, she cuts me off repeatedly, thwarts every question I have about diet, exercise, pain medication, my current regime, weight gain... She basically told me she can't do anything for me, that I am too young to have Osteoarthritis (to which I replied, "how do you think I felt at 29 years old being told I have the back of a 65 year old woman and that I couldn't continue in my current profession?"). She grilled me about how I received the diagnosis, patronized me when I told her it took me a few years to get to a functional place, where I can exercise again and have a semi-normal existence. I told her I am looking for a doctor who believes in me and who will work with me to manage this disease. She asked, "the important thing is do you believe in yourself?" Well no freaking duh lady! But you are the one with the prescription pad and the authority for my Medicaid case. Anyway...
So she is in the room for all about 5 minutes. No exam, no looking through my medical paperwork at all. She tells me to come back in 6 months. I stopped her, and said I wasn't trying to be snarky, but what was the point of coming to see her, paying out of pocket when she didn't do anything? She said there was nothing she could do.
REALLY?!
A Rheumatologist who specializes in Fibro can do nothing for a Fibro patient?
She made a half-hearted attempt to press my tender points. Looked disinterestedly through my paperwork. She said she doesn't deal with viral infections, would not test me for autoimmune issues because she didn't think I had Lupus. I explained family history of Lupus and MS, my own positive and negative autoimmune results. Asked her if she could check my ear because I get frequent earaches and a lump on my neck that lives there. She told me I had to have my primary check those things out.
Excuse me, but what the hell is a specialist for? Especially paying out of pocket????
I left, got in the car, and cried. Not in self-pity, not in depression, but in anger. For myself, and for all of those out there dealing with any illness who are dismissed by medical professionals. I can guarantee if I were a damn Kardashian I could probably get an MRI for a hurt pinky, with a prescription for unlimited pain killers. Money rules. Going to appointments like this reminds me of how it used to be... when my body was falling apart bit by bit, and there were NO answers at all. When I would bleed and ache and fight to make it through each day, and no one would help me or take me seriously. Sure, now I can ride my bike 5 times a week, I can go to a movie, or chat on the phone a bit... but oh, what it took to get here.
This is not the first time I have had to deal with someone being rude to me because I am young and because I have an illness that astounds them. Honestly, I think a lot of it has to do with their own pride. If they can't fix us they don't want to deal with us. It's so infuriating! Rheumatologists are starting to deny Fibro patients because it is seeming to be Neurological in origin, yet Neurologists are not yet taking us on, so we are just floating in the abyss of sickness.
It makes me utterly grateful that I was able to go to the Fibro clinic in California. If I hadn't researched on my own online, I never would have known that was an option and I wouldn't have gotten all those blood tests done, revealing the viral infections and other hidden issues contributing to the Fibromyalgia. I never would have gotten started on supplements, and I would still be in the dark.
I feel grateful that I know which medications to take for my particular Fibro cocktail. I am glad to have carved out a functional lifestyle, albeit extremely limited, after scrambling around like mad for years, driving myself into the ground. It took a long time and extreme effort to climb out of depression and into acceptance! But it is not enough for me to be "managed." What about my friends who are treated like loony bins? What about those who do not have access to free health care? What about those of us who are still treated like we are crazy, like Fibro is all in our heads?
I pray for the day when we will be taken seriously. When people stop saying all we need is exercise and a good diet. When doctors HAVE to believe us. When our age is no longer a reason we are discriminated against.
When I was getting treatment at the Fibro clinic my doctor told me, "You are not crazy. This is NOT in your head. You have a real disease and it will take some hard work and a lot of time to get it managed."
Managed, not cured.
There is no cure as of yet.
But we can learn to live with it.
I'd like to remind you that you are not crazy. You have a disease. It is not in your head. You are not alone.
Out of the dozens of doctors I have seen, there are probably only about 3-4 that have taken the time to get to know me and who have taken the time to help me.
It's a shame that most doctors are unqualified for their jobs.
Tuesday, October 30, 2012
Make a Difference
It's amazing how insensitive people are. Further proof of how Fibromyalgia is dismissed as a real illness is how people feel that they are qualified to tell us how to make ourselves better. As if we are not pro-active about our own health, as if we just sit around with our heads hanging low, feeling sorry for ourselves.
Uh no. Would they tell someone with MS that they need only change their diet or do some type of yoga or swirl around on some magical balance ball? What about Parkinson's? Cancer? Diabetes? So why is it practically a given that upon finding out we have Fibro, each person will attempt to school us on a disease they have no comprehension of?
I get that people think they are being helpful, but they aren't. What they are doing is adding more pressure to the pressure we already pile on ourselves. That pressure from society to be better or else.
I will say it again- Fibromyalgia is a very sensitive disease and everyone experiences it differently. We have shared symptoms, but our own version of Fibro changes daily, depending on what our bodies have gone through. Case in point, yesterday I was in a severe state of pain and fatigue, but today I woke up with a little more energy to fix the bed right away. This does not mean I feel 100%. It means that I have about 2% more energy then yesterday and if I rest all of today and all of tomorrow, perhaps MAYBE I will be able to handle my appointment on Thursday. 3 days of rest for one outing. No matter how I feel I have to go though. That's the thing- we have to pick and choose what we can do and most of the time we would benefit from simply staying in bed. The reason? Not some magical potion but sleep. Yup, sleep. Diet & exercise do lend itself to the disease, but not always in a positive way. Sleep, however, is the very best medicine we've got. It's not easy to fall asleep... Sometimes it can take hours even with the use of sleep aids. I'm not sure why but I know the fact that our muscles never relax has to contribute. They are always taut. When we do get to sleep sometimes we repeatedly wake up. It's a beautiful thing when we do get sleep and that is the number one prescription for this disease.
Aside from sleep, medication, diet, and exercise there is not a lot to be done for this illness, but you can bet your bottom dollar that we try everything we can.
I'll tell you what will be more helpful then unsolicited advice about a very real, debilitating medical condition... Simply exhibiting understanding when we cannot hang out or commit to plans. Encouraging us to rest, to not feel guilty about being sick, being kind and not sharing in the prejudice against chronic illness we face in this busy, go go go world we live in.
It makes all of the difference in the world when people stop trying to fix us, and instead, accept us as we are- sickness and all.
This disease is not laziness or exaggerated for dramatic purposes. We have a defunct immune system and a defunct central nervous system. There is something very real damaging our ability to process sound, touch, etc.
The day "they" discover the exact root of this illness and what it is actually doing versus just writing it off as "some pain and fatigue" that will be cured with exercise, will be a celebratory day. I look forward to it with all of my heart and I pray that none of you EVER experience the destruction of Fibromyalgia.
Uh no. Would they tell someone with MS that they need only change their diet or do some type of yoga or swirl around on some magical balance ball? What about Parkinson's? Cancer? Diabetes? So why is it practically a given that upon finding out we have Fibro, each person will attempt to school us on a disease they have no comprehension of?
I get that people think they are being helpful, but they aren't. What they are doing is adding more pressure to the pressure we already pile on ourselves. That pressure from society to be better or else.
I will say it again- Fibromyalgia is a very sensitive disease and everyone experiences it differently. We have shared symptoms, but our own version of Fibro changes daily, depending on what our bodies have gone through. Case in point, yesterday I was in a severe state of pain and fatigue, but today I woke up with a little more energy to fix the bed right away. This does not mean I feel 100%. It means that I have about 2% more energy then yesterday and if I rest all of today and all of tomorrow, perhaps MAYBE I will be able to handle my appointment on Thursday. 3 days of rest for one outing. No matter how I feel I have to go though. That's the thing- we have to pick and choose what we can do and most of the time we would benefit from simply staying in bed. The reason? Not some magical potion but sleep. Yup, sleep. Diet & exercise do lend itself to the disease, but not always in a positive way. Sleep, however, is the very best medicine we've got. It's not easy to fall asleep... Sometimes it can take hours even with the use of sleep aids. I'm not sure why but I know the fact that our muscles never relax has to contribute. They are always taut. When we do get to sleep sometimes we repeatedly wake up. It's a beautiful thing when we do get sleep and that is the number one prescription for this disease.
Aside from sleep, medication, diet, and exercise there is not a lot to be done for this illness, but you can bet your bottom dollar that we try everything we can.
I'll tell you what will be more helpful then unsolicited advice about a very real, debilitating medical condition... Simply exhibiting understanding when we cannot hang out or commit to plans. Encouraging us to rest, to not feel guilty about being sick, being kind and not sharing in the prejudice against chronic illness we face in this busy, go go go world we live in.
It makes all of the difference in the world when people stop trying to fix us, and instead, accept us as we are- sickness and all.
This disease is not laziness or exaggerated for dramatic purposes. We have a defunct immune system and a defunct central nervous system. There is something very real damaging our ability to process sound, touch, etc.
The day "they" discover the exact root of this illness and what it is actually doing versus just writing it off as "some pain and fatigue" that will be cured with exercise, will be a celebratory day. I look forward to it with all of my heart and I pray that none of you EVER experience the destruction of Fibromyalgia.
Monday, October 29, 2012
Moody Me
I don't feel all that inspired to write tonight, but I feel like these are the times that NEED to be documented, because it is the reality of living with illness. For about a month my body was allowing me to be slightly more active and so I took full advantage by going on errands and beginning to exercise again. Without warning my body decided to shut down again, so now I feel the repercussions of that last month.
The one thing that has stayed constant is the exercise. I take a day or two off here and there, but otherwise it has been consistent. I used to walk but now I utilize my bike. It's refreshing to be out in the clean air, but I know I have to balance things out or else I end up sowing into the Fibromyalgia bucket and it really does like to collect my energy, as limited as that is!
Since the weather is beyond freezing right now (which I love, love, love!) my body has decided to start having spasms and cramping everywhere again. This time of year is not Fibromyalgia friendly in the slightest. My skin hurts more then usual. Last night the sheets felt like they were stabbing my legs, and today I had to remove my necklace because anything touching me feels horrendous. Even my hair is hurting. It's pretty insane what this illness does to a person. It's right up there with cancer in my book, but not as recognized and therefore, written off as not as dire.
Trust me, it's dire.
They say it's not fatal, but I choose to disagree. EVERYTHING is impacted. Mind and body.
This week I have a first time appointment at a Rheumatologist. I am dreading it. Unless you've been to dozens of doctors within the span of a few years, you may wonder what the big deal is. Well, one is the appointment itself. Getting dressed in something other than pajamas, riding in a car, having to re-explain your entire history- including EVERY medication, EVERY ailment... it's a lot. I used to enjoy going to doctors appointments.... but after these last few years of being dismissed, patronized, not believed, and discredited, I just don't have it in me to have faith in the medical system. I am appreciative for it, and I have maybe 3 or 4 positive doctors experiences, but for the most part, an appointment with a new doctor causes palpitations and dread. I absolutely cannot stand when someone says not to stress or that it'll be fine.
DUH.
Obviously. You know, those of us with Fibromyalgia are pretty damn strong. You think we complain? Ha! You don't know the half of the half of what we go through every single moment of every single day. So, to tell us how to feel about OUR disease is maddening. When you go through it yourself, then you get to have an opinion. It sounds harsh because IT IS harsh.
Anyway, I'll go and give my extensive history and be assessed. This is necessary for my SSI appeal, and I need regular care with a specialist versus going to the clinic. With all of my ailments and especially with Fibro, a regular doctor does not suffice. The most disheartening thing is that going to a new doctor will not do anything. That isn't defeatist. I'm being honest. I spent years going to doctor after doctor, gathering diagnoses along the way, and being put on different medications. Now, I am at a point where I am on what medications aid me, but there is still no cure. So, a new doctor will only be affirming for like the 4th time that I do have Fibromyalgia, she'll press all my tender spots, she'll tell me I need to exercise (which I do but they'll say it anyway), and they'll tell me what they do know... which is so incredibly limited that it is almost laughable.
I heard somewhere that Rheumatologists are starting to deny patients with Fibromyalgia. The reason being that this illness stems from Neurological issues... but Neurologists are not taking us on yet, so we basically are lost in the between place. It's so infuriating!
I am praying for that marvelous day when they will be able to detect this disease with a blood test, with a scan, with anything concrete, because sadly, that seems to be the only way the world will take us seriously. There is an article I read that says that a brain scan showed evidence. Here is the link: http://www.mysquirrelbait.com/brain-scans-detect-fibromyalgia/
This isn't a la la post about how everything is oh-so glittering with sunshine, but the reality that Fibromyalgia is completely rude and being ill sucks.
Was my progress real? Yes, it is real. I have come a long, long way from that broken, beat down place. My moments of optimism are genuine, but these dark moments are just as imperative to feel, explore, and grow into and out of. It took me ages to understand that being in a bad mood because I am sick is okay sometimes. Hell, if others get their knickers twisted after a day or two of sickness, then I believe we are entitled to a few days of grumpies, my fellow Fibro warriors.
I have absolutely no energy. A shower a day is a huge task again. Exercise is NOT a cure to all of you who think it is. I am being active despite the feeling like slime, and guess what? I still have Fibro! Gasp. My neck hurts to hold up, my skin feels like it is burning and being stabbed, and all I yearn to do is sleep.
BUT when we feel like that, we still do what we need to. We text people back, we watch a tv show with a loved one, we shower, we do laundry, we sit at the dinner table, we make phone calls, we do paperwork, we carve pumpkins, we take pictures, we force ourselves to eat food that tastes gross.
We do this because we are champions.
Truly.
The one thing that has stayed constant is the exercise. I take a day or two off here and there, but otherwise it has been consistent. I used to walk but now I utilize my bike. It's refreshing to be out in the clean air, but I know I have to balance things out or else I end up sowing into the Fibromyalgia bucket and it really does like to collect my energy, as limited as that is!
Since the weather is beyond freezing right now (which I love, love, love!) my body has decided to start having spasms and cramping everywhere again. This time of year is not Fibromyalgia friendly in the slightest. My skin hurts more then usual. Last night the sheets felt like they were stabbing my legs, and today I had to remove my necklace because anything touching me feels horrendous. Even my hair is hurting. It's pretty insane what this illness does to a person. It's right up there with cancer in my book, but not as recognized and therefore, written off as not as dire.
Trust me, it's dire.
They say it's not fatal, but I choose to disagree. EVERYTHING is impacted. Mind and body.
This week I have a first time appointment at a Rheumatologist. I am dreading it. Unless you've been to dozens of doctors within the span of a few years, you may wonder what the big deal is. Well, one is the appointment itself. Getting dressed in something other than pajamas, riding in a car, having to re-explain your entire history- including EVERY medication, EVERY ailment... it's a lot. I used to enjoy going to doctors appointments.... but after these last few years of being dismissed, patronized, not believed, and discredited, I just don't have it in me to have faith in the medical system. I am appreciative for it, and I have maybe 3 or 4 positive doctors experiences, but for the most part, an appointment with a new doctor causes palpitations and dread. I absolutely cannot stand when someone says not to stress or that it'll be fine.
DUH.
Obviously. You know, those of us with Fibromyalgia are pretty damn strong. You think we complain? Ha! You don't know the half of the half of what we go through every single moment of every single day. So, to tell us how to feel about OUR disease is maddening. When you go through it yourself, then you get to have an opinion. It sounds harsh because IT IS harsh.
Anyway, I'll go and give my extensive history and be assessed. This is necessary for my SSI appeal, and I need regular care with a specialist versus going to the clinic. With all of my ailments and especially with Fibro, a regular doctor does not suffice. The most disheartening thing is that going to a new doctor will not do anything. That isn't defeatist. I'm being honest. I spent years going to doctor after doctor, gathering diagnoses along the way, and being put on different medications. Now, I am at a point where I am on what medications aid me, but there is still no cure. So, a new doctor will only be affirming for like the 4th time that I do have Fibromyalgia, she'll press all my tender spots, she'll tell me I need to exercise (which I do but they'll say it anyway), and they'll tell me what they do know... which is so incredibly limited that it is almost laughable.
I heard somewhere that Rheumatologists are starting to deny patients with Fibromyalgia. The reason being that this illness stems from Neurological issues... but Neurologists are not taking us on yet, so we basically are lost in the between place. It's so infuriating!
I am praying for that marvelous day when they will be able to detect this disease with a blood test, with a scan, with anything concrete, because sadly, that seems to be the only way the world will take us seriously. There is an article I read that says that a brain scan showed evidence. Here is the link: http://www.mysquirrelbait.com/brain-scans-detect-fibromyalgia/
This isn't a la la post about how everything is oh-so glittering with sunshine, but the reality that Fibromyalgia is completely rude and being ill sucks.
Was my progress real? Yes, it is real. I have come a long, long way from that broken, beat down place. My moments of optimism are genuine, but these dark moments are just as imperative to feel, explore, and grow into and out of. It took me ages to understand that being in a bad mood because I am sick is okay sometimes. Hell, if others get their knickers twisted after a day or two of sickness, then I believe we are entitled to a few days of grumpies, my fellow Fibro warriors.
I have absolutely no energy. A shower a day is a huge task again. Exercise is NOT a cure to all of you who think it is. I am being active despite the feeling like slime, and guess what? I still have Fibro! Gasp. My neck hurts to hold up, my skin feels like it is burning and being stabbed, and all I yearn to do is sleep.
BUT when we feel like that, we still do what we need to. We text people back, we watch a tv show with a loved one, we shower, we do laundry, we sit at the dinner table, we make phone calls, we do paperwork, we carve pumpkins, we take pictures, we force ourselves to eat food that tastes gross.
We do this because we are champions.
Truly.
Wednesday, October 24, 2012
Sound
It is not some mild annoyance, but rather, instead, a likened feeling of an alarming phone call that comes in the dead of night, the complete panic and sudden fear and NEED to get away. That is what having Fibromyalgia is like with noise. It rises and rises, each pitch a direct hit to the nervous system... A ping becomes driving, forcing, splitting especially competing with voices near you, the way the wind is howling just so, the crumple of a piece of paper 2 rooms over, and that kitchen sink has been on for what must be at least 500 hours straight...
Tuesday, October 9, 2012
Full Transparency
People like a good story. The kind where positive realizations are shared and they can feel warm and fuzzy and encouraged after they read it. I am not immune to loving those stories. Tears will drizzle down my face as I cheer inwardly for whoever has reached a state of internal sunshine. It makes for a beautiful life.
But what of the darker stories? The kind we usually don't get to read because what is shared with the public are only the happy chapters? I refuse to do that. I would be doing a disservice to myself and to others who have Fibromyalgia. I would only be portraying the downhill moments versus the ones where I am climbing, straining, dragging myself up the jagged hills of illness. Sure, the view on the mountaintop is brilliant, but I wouldn't ever see it if I didn't force myself to keep climbing.
About a month ago I started a new medication, which helps with the nerves. It has been a miracle medication for me. I felt less immediate pain and because of that I started to do more. Instead of one major ( this would be a trip to Walmart or Target) outing for the month like usual, I instead went out 2-3x a week. I also started exercising on a regular basis again. First with walking around the block, and when I inherited a bike, I relished in the freedom of flying down the street as the wind whipped my hair. I was laughing with ease, sleeping easily, and enjoying feeling human after nearly three years of being cooped up inside 98% of the time.
I slowly started to feel the effects of exercising too much, of going out into the real world... Noises became even more intolerable, the pain came back with a vengeance... But I had tasted a newfound freedom, one I had lived without for years, and I wasn't willing to give it up again. So even though I was already in a flare I just kept pushing. It felt beyond grand to be able to function in the actual world again! I was proud of myself and I fed off of the cheers from family and friends. I felt like less of a disappointment (that is something we Fibro-ites deal with continually... Feeling like we are letting down everyone in our lives because we are so extremely limited) and that was really wonderful.
This is the part where a person without Fibro would say that this is awesome and I should keep exercising every day, and this is the "cure" for it all... and where the one who does have Fibro would give me their own two cents for how they handle their flares and their exercise. Both are opinions I am not looking for.
Fibromyalgia is a specifically tailored illness. I've said it before and I will say it enough times it takes for people to GET it. We are all different. We share varying degrees of a long list of symptoms, but how and when we feel each of those things is such a personal experience. We who have this illness know it is not a one size fits all, but sometimes we can get smug thinking we have something mastered.
We don't.
Fibromyalgia is moody. It's unpredictable and unkind. We think we have a delicate balance but then it switches up on us.
As I said, lately I have started to feel the reality slump down on me... Little by little, until everything started driving me bananas as my nervous system went haywire! I started having trouble sleeping again and would lie awake until 6-7am, the pain pressed HARD in forgotten places... And tonight the thud happened and suddenly I was feeling hotter then Africa inside... I'm surprised there was not steam coming from my ears. I threw the remote across the room, and I cried. The trigger was when something happened with the cable and DVR, but that was only a manifestation of the deep rage that ran beneath the surface.
I was... and am angry. Furious even. I realize again that I DO have limitations... A lot of them. I can't exercise every single day (though I want to and typing that makes me feel like a bird trapped in a cage or having my wings clipped off), I can't go out every week, Gabapentin is not a cure, and I still have Fibromyalgia.
The reason I am able to have "good" days is because I moved here to NC. I stopped working, I had to leave behind my whole life, I had to leave behind Mylie. I had to stop pretending I was normal and continuing to drive myself into the ground because I desperately wanted to stay active and the same.
This last month I felt like the old me... Still with Fibro, but also capable of having a life outside of these four walls. And it felt damn good... Too good. So good that it caused rage to realize it was an illusion...
Because I am sick, and I do have limitations, and I can do some things, but I cannot do all things no matter how much I ache to.
Last week I had this notion that maybe I could get a job again, I felt freedom again, and it was wonderful. But now I have learned that having a series of "good" days still means I have to ration my previous energy and only select a few to dos. If I don't I will end up on day ten of a massive flare, ignoring the very real alarms going off in my body, and breaking down from the extreme overload and pain.
It's quite upsetting to understand this once again, but on the flip side I am grateful I had this last month. It has reminded me that I can still live, still exercise, still have days of freedom... But I also have to remember that I am not healthy. I AM sick.
Maybe one of these days I'll actually fully grasp that and stop pushing so hard. I'm not so good at the resting thing... I find I won't sit still for very long, I rarely lay down even when my body is begging that is all I do, I do loads of laundry while in a flare, and I ride my bike several days despite knowing I shouldn't, I don't do sick properly. That has got to change in A major way. I have made a lot of progress handling this disease, but I still need so much more patience and growth.
It has been a hard lesson re-learned for my stubborn mind.
Until next time,
Janet
But what of the darker stories? The kind we usually don't get to read because what is shared with the public are only the happy chapters? I refuse to do that. I would be doing a disservice to myself and to others who have Fibromyalgia. I would only be portraying the downhill moments versus the ones where I am climbing, straining, dragging myself up the jagged hills of illness. Sure, the view on the mountaintop is brilliant, but I wouldn't ever see it if I didn't force myself to keep climbing.
About a month ago I started a new medication, which helps with the nerves. It has been a miracle medication for me. I felt less immediate pain and because of that I started to do more. Instead of one major ( this would be a trip to Walmart or Target) outing for the month like usual, I instead went out 2-3x a week. I also started exercising on a regular basis again. First with walking around the block, and when I inherited a bike, I relished in the freedom of flying down the street as the wind whipped my hair. I was laughing with ease, sleeping easily, and enjoying feeling human after nearly three years of being cooped up inside 98% of the time.
I slowly started to feel the effects of exercising too much, of going out into the real world... Noises became even more intolerable, the pain came back with a vengeance... But I had tasted a newfound freedom, one I had lived without for years, and I wasn't willing to give it up again. So even though I was already in a flare I just kept pushing. It felt beyond grand to be able to function in the actual world again! I was proud of myself and I fed off of the cheers from family and friends. I felt like less of a disappointment (that is something we Fibro-ites deal with continually... Feeling like we are letting down everyone in our lives because we are so extremely limited) and that was really wonderful.
This is the part where a person without Fibro would say that this is awesome and I should keep exercising every day, and this is the "cure" for it all... and where the one who does have Fibro would give me their own two cents for how they handle their flares and their exercise. Both are opinions I am not looking for.
Fibromyalgia is a specifically tailored illness. I've said it before and I will say it enough times it takes for people to GET it. We are all different. We share varying degrees of a long list of symptoms, but how and when we feel each of those things is such a personal experience. We who have this illness know it is not a one size fits all, but sometimes we can get smug thinking we have something mastered.
We don't.
Fibromyalgia is moody. It's unpredictable and unkind. We think we have a delicate balance but then it switches up on us.
As I said, lately I have started to feel the reality slump down on me... Little by little, until everything started driving me bananas as my nervous system went haywire! I started having trouble sleeping again and would lie awake until 6-7am, the pain pressed HARD in forgotten places... And tonight the thud happened and suddenly I was feeling hotter then Africa inside... I'm surprised there was not steam coming from my ears. I threw the remote across the room, and I cried. The trigger was when something happened with the cable and DVR, but that was only a manifestation of the deep rage that ran beneath the surface.
I was... and am angry. Furious even. I realize again that I DO have limitations... A lot of them. I can't exercise every single day (though I want to and typing that makes me feel like a bird trapped in a cage or having my wings clipped off), I can't go out every week, Gabapentin is not a cure, and I still have Fibromyalgia.
The reason I am able to have "good" days is because I moved here to NC. I stopped working, I had to leave behind my whole life, I had to leave behind Mylie. I had to stop pretending I was normal and continuing to drive myself into the ground because I desperately wanted to stay active and the same.
This last month I felt like the old me... Still with Fibro, but also capable of having a life outside of these four walls. And it felt damn good... Too good. So good that it caused rage to realize it was an illusion...
Because I am sick, and I do have limitations, and I can do some things, but I cannot do all things no matter how much I ache to.
Last week I had this notion that maybe I could get a job again, I felt freedom again, and it was wonderful. But now I have learned that having a series of "good" days still means I have to ration my previous energy and only select a few to dos. If I don't I will end up on day ten of a massive flare, ignoring the very real alarms going off in my body, and breaking down from the extreme overload and pain.
It's quite upsetting to understand this once again, but on the flip side I am grateful I had this last month. It has reminded me that I can still live, still exercise, still have days of freedom... But I also have to remember that I am not healthy. I AM sick.
Maybe one of these days I'll actually fully grasp that and stop pushing so hard. I'm not so good at the resting thing... I find I won't sit still for very long, I rarely lay down even when my body is begging that is all I do, I do loads of laundry while in a flare, and I ride my bike several days despite knowing I shouldn't, I don't do sick properly. That has got to change in A major way. I have made a lot of progress handling this disease, but I still need so much more patience and growth.
It has been a hard lesson re-learned for my stubborn mind.
Until next time,
Janet
Subscribe to:
Posts (Atom)