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.
Tuesday, October 30, 2012
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
Monday, October 8, 2012
Monster Flare
Oh yeah, I have Fibromyalgia.
The agony has manifested in full force today. Aside from the normal, daily fatigue and pain there is THE monster of it all, made aware by skin that feels bruised and twisted and ripped apart from the inside out. The heavy limbs, and squinty eyes from a head that feels clasped in huge hands squeezing entirely too tight. Last night I massaged my neck in vain for 3 hours hoping to push out that bothersome lump, and today my arms feel the burden of moving for so long, and my neck is not happy either. Please do not be confused... Fibromyalgia is NEVER a pain, fatigue free ride, but there is "normal" level, which to a healthy person would be horrendous (i.e. flu, aching muscles after exercising too much, a double shift at work, etc.)... that is our everyday "normal" and so our monster days are like being slammed by basketballs in every crevice, or being hit by a moving car... the kind of days where we just want to throw in the towel or lay down with absolutely no movement whatsoever. The days where we feel like we just may break under the strain of so much physical agony. Truly, it is a beast.
Still, I am trying to focus on the positives... I went walking once this week, and rode my bicycle for 4 days in a row. That's a huge accomplishment! In the last two and a half weeks I have been able to exercise more than I have in the last 3 years. I don't want to dismiss that even though I am feeling the hellish flare right now. In the shower I stood under that hot water, letting it hit my back, feeling like one giant bruise. OUCH!
I am hoping that if I lay low for these two days that my body will be up for the day trip to Wilmington on Wednesday. I am supremely looking forward to it, and feel frustration that my body decided that now is the time to collapse after all of my recent activity.
So on this lovely rainy day, I plan to put my feet up and watch these movies on the DVR, and try in vain to ignore the pulsing, throbbing agony that Fibromyalgia is dishing out.
Until next time,
Janet
The agony has manifested in full force today. Aside from the normal, daily fatigue and pain there is THE monster of it all, made aware by skin that feels bruised and twisted and ripped apart from the inside out. The heavy limbs, and squinty eyes from a head that feels clasped in huge hands squeezing entirely too tight. Last night I massaged my neck in vain for 3 hours hoping to push out that bothersome lump, and today my arms feel the burden of moving for so long, and my neck is not happy either. Please do not be confused... Fibromyalgia is NEVER a pain, fatigue free ride, but there is "normal" level, which to a healthy person would be horrendous (i.e. flu, aching muscles after exercising too much, a double shift at work, etc.)... that is our everyday "normal" and so our monster days are like being slammed by basketballs in every crevice, or being hit by a moving car... the kind of days where we just want to throw in the towel or lay down with absolutely no movement whatsoever. The days where we feel like we just may break under the strain of so much physical agony. Truly, it is a beast.
Still, I am trying to focus on the positives... I went walking once this week, and rode my bicycle for 4 days in a row. That's a huge accomplishment! In the last two and a half weeks I have been able to exercise more than I have in the last 3 years. I don't want to dismiss that even though I am feeling the hellish flare right now. In the shower I stood under that hot water, letting it hit my back, feeling like one giant bruise. OUCH!
I am hoping that if I lay low for these two days that my body will be up for the day trip to Wilmington on Wednesday. I am supremely looking forward to it, and feel frustration that my body decided that now is the time to collapse after all of my recent activity.
So on this lovely rainy day, I plan to put my feet up and watch these movies on the DVR, and try in vain to ignore the pulsing, throbbing agony that Fibromyalgia is dishing out.
Until next time,
Janet
Sunday, October 7, 2012
It's Not Always Rainbows
This lump on my neck has been bugging me for weeks now. It comes and goes, varying in size. It feels like the knots that I associate with Fibromyalgia. The same kind we get in our wrists, or back, or legs, or wherever. Except this lump is stubborn and clings to the left side of my neck like it lives there, which I guess it kind of does. Slight massages (of the non-professional variety) work only a little, but it works better than nothing.
The heart palpitations made a comeback the other day. It'd been awhile, and suddenly here they were. It's amazing how much they feel like a heart attack or something (or so I would assume, never having had a heart attack)even though we know that it is not a heart attack.
And I had one of my nightmares this morning. It was a spiritually related dream like usual, and demonic activity was present. In the dream I usually start trying to say "Jesus!" and cannot talk. Then I wake up saying it, and feeling the fear from the nightmare. NO fun.
I feel like I just took a bath in someone else's poop. Isn't that the way of it? When we allow even just ONE toxic person into out lives, suddenly those carefully erected boundaries crash down... even when we try to keep them in place. It does not work. Once we have the boundary up, it needs to stay up, and those toxic people cannot be allowed to come in anymore... EVER. I have tried on many occasions to have relationships with toxic people in my world WITH boundaries in place, but I quickly learn again that toxic people DO NOT respect ANY boundaries and will come in uninvited, trample everything, and leave you to deal with the garbage they leave behind. We all need to have boundaries with such people, and for the one with Fibromyalgia it is that much more important. We are already so sensitive to everything, and emotions are no different.
So right now, I need to take a shower and soak in the presence of God for awhile to get my fresh air back.
No more toxicity.
The heart palpitations made a comeback the other day. It'd been awhile, and suddenly here they were. It's amazing how much they feel like a heart attack or something (or so I would assume, never having had a heart attack)even though we know that it is not a heart attack.
And I had one of my nightmares this morning. It was a spiritually related dream like usual, and demonic activity was present. In the dream I usually start trying to say "Jesus!" and cannot talk. Then I wake up saying it, and feeling the fear from the nightmare. NO fun.
I feel like I just took a bath in someone else's poop. Isn't that the way of it? When we allow even just ONE toxic person into out lives, suddenly those carefully erected boundaries crash down... even when we try to keep them in place. It does not work. Once we have the boundary up, it needs to stay up, and those toxic people cannot be allowed to come in anymore... EVER. I have tried on many occasions to have relationships with toxic people in my world WITH boundaries in place, but I quickly learn again that toxic people DO NOT respect ANY boundaries and will come in uninvited, trample everything, and leave you to deal with the garbage they leave behind. We all need to have boundaries with such people, and for the one with Fibromyalgia it is that much more important. We are already so sensitive to everything, and emotions are no different.
So right now, I need to take a shower and soak in the presence of God for awhile to get my fresh air back.
No more toxicity.
Saturday, October 6, 2012
And Then There Was Saturday
Last night was hard.
It started great, but near bedtime I got into an argument with someone very close to me. Words flew, stabbing and ripping like swords to the soul. I cried. Huge sobs. I was hurt, and I hurt someone else. Aren't fights just awful? You know while you are in it that you want out, but it's such a tight grip and that darn pride steps in, and you want to be soft and say sorry and just make it be pretty again, but the hurt is just too palpable and you stand there vulnerable. Needless to say, sleep did not come easy, and when I woke up my eyelids were puffy, and I had a headache. There was an ache my heart. Apologies had been said, but words are such daggers, and upon facing the day I still felt icky.
I showered, started the first load of laundry, and read some blogs. The flare settled on my bones and muscles and begged me to come close to the ground, but I knew I needed to get out.
I was grumpy as I led the car down to the neighborhood Krispy Kreme. One of those days where every single driver is that driver in front of you who insists on pressing the brake every five seconds. And when I walked into Krispy Kreme, what do you know, they were out of fresh, hot glazed. The very thing I was craving. The way it melts as soon as it hits the tongue. But the boxes that held the two dozen have Halloween decorations on them, and the donut I scarfed down was delicious, especially coupled with the ice cold bottled water I purchased. Isn't cold water one of the most delicious treats ever?!
As I drove home, my mood was lighter. I saw with clearer eyes... the lady walking with her teenage girls, the green tree that reached high. I listened.... as the radio played funky songs that resonated deep and brought me back to childhood and the circle of love I have carried my whole life. I felt refreshed. What a miracle that I was out at all! A few months ago if I was in a flare there is no way on earth I could be around other human beings, and yet there I was!
And tonight as the sun dips low in the sky, I will ride my bike and marvel at the air racing swiftly past, and when I return I will be warm and safe in a house with sturdy walls, and be thankful for one more day.
It started great, but near bedtime I got into an argument with someone very close to me. Words flew, stabbing and ripping like swords to the soul. I cried. Huge sobs. I was hurt, and I hurt someone else. Aren't fights just awful? You know while you are in it that you want out, but it's such a tight grip and that darn pride steps in, and you want to be soft and say sorry and just make it be pretty again, but the hurt is just too palpable and you stand there vulnerable. Needless to say, sleep did not come easy, and when I woke up my eyelids were puffy, and I had a headache. There was an ache my heart. Apologies had been said, but words are such daggers, and upon facing the day I still felt icky.
I showered, started the first load of laundry, and read some blogs. The flare settled on my bones and muscles and begged me to come close to the ground, but I knew I needed to get out.
I was grumpy as I led the car down to the neighborhood Krispy Kreme. One of those days where every single driver is that driver in front of you who insists on pressing the brake every five seconds. And when I walked into Krispy Kreme, what do you know, they were out of fresh, hot glazed. The very thing I was craving. The way it melts as soon as it hits the tongue. But the boxes that held the two dozen have Halloween decorations on them, and the donut I scarfed down was delicious, especially coupled with the ice cold bottled water I purchased. Isn't cold water one of the most delicious treats ever?!
As I drove home, my mood was lighter. I saw with clearer eyes... the lady walking with her teenage girls, the green tree that reached high. I listened.... as the radio played funky songs that resonated deep and brought me back to childhood and the circle of love I have carried my whole life. I felt refreshed. What a miracle that I was out at all! A few months ago if I was in a flare there is no way on earth I could be around other human beings, and yet there I was!
And tonight as the sun dips low in the sky, I will ride my bike and marvel at the air racing swiftly past, and when I return I will be warm and safe in a house with sturdy walls, and be thankful for one more day.
Friday, October 5, 2012
On a Friday
Driving along singing with the stereo. Thinking about home and how much of who I am dances in California air, but a part of my spirit is now here in North Carolina too.
At the thrift store I found some gorgeous plates that remind me of the 70's & a very old Joy of Cooking book. I collect old books- the older the better. The employee stocking the shelves was holding the book with love and I could see she really wanted it. She explained that employees are not allowed to purchase from there. I put the book in my basket and after she rang me up I told her I bought the book for her. I loved her surprise! Her cheeks turned red and she was so happy. You could light the sky with her smile. :) :) :)
Starting to know the city I live in. The woman at the library knows who me and my mom are and always says hi.
Such a pleasant thing- to gab with a stranger and share the same air for a few minutes.
Only recently have I started walking with my head up again, meeting eyes with strangers, feeling confident in my own skin. For so long I walked around entirely broken. Rushing when I went out on a rare day by myself. Scared I was going to have a meltdown or be too tired or in pain to go anywhere at all. For a long, long time it WAS like that. This, for my adventurous spirit, was most crushing. I felt the giant Fibro monster on my back at all times. Not simply the physical pain, but more crippling, the emotional. I was so nervous and afraid. So, so afraid. Somehow in recent months I have got my groove back, and I smile freely, I mosey, I live. I feel the pain of Fibromyalgia, I pay heed to it's demands, I feel the strangling of fatigue... but I DO when I can, and my oh my, it's a sensational thing! I am no longer terrified to go on a long drive (well, maybe not too far), get lost on purpose, and explore. Maybe now I can get to know North Carolina a little better. It's time, I think.
Crying at the thrill of simply seeing a movie. Earplugs in, tears streaming down my face. Such a small thing, such a treat. Watching talent unfold before my very eyes with people singing and moving and breathing life on that giant screen. Life... It's a miracle. I used to take it for granted. Going to a movie whenever I wanted. But now it's a treasure among a common day. I love that.
As I left the theatre the sun sat low in the sky and I got to grab a Starbucks and head home to ride my bicycle. Is this really my life? How can it be THIS grand in just the ordinary?
And this is what sickness has taught me... That life, in all of its forms (good, bad, & mundane), is precious and fleeting and so, so, so lovely.
After the pain and darkness of the last three years I finally understand the saying, "I have Fibromyalgia but it doesn't have me." I could never agree with that before, because truthfully, Fibromyalgia DID have me, and if I am not careful it could have me again. But after so much work, and miles of progress, I know now I can have a tangible life EVEN with illness.
There is still so much to be learned in this life on earth, and I am wide open to receive it. I saw this as I drove away from the theatre and as I read it I laughed. It's fitting because the space in my heart is vast and ready for all of the things to come... the happy, the sad, the ordinary.
Thank you, God. Thank you, thank you.
Psalm 36:5-9
Your love, Lord, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the highest mountains,
your justice like the great deep.
You, Lord, preserve both people and animals.
How priceless is your unfailing love, O God!
People take refuge in the shadow of your wings.
They feast on the abundance of your house;
you give them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.
Your love is in the little things...
With the buffet of sprinkling stars as I rode my bicycle around the block,the road pitch black but for a few sporadic street lamps. It was a little scary, and a lot of fun.
With the opening of my very favorite resturant, Olive Garden, opening in this little town. Making it that much more like home, where I spent so many hours with so many wonderful people eating those salty, greasy bread sticks, sharing lives.
With the parents you have blessed me with.
With this warm house to be safe in night after night.
Dear Life,
You thrill me.
Honest, you do.
At the thrift store I found some gorgeous plates that remind me of the 70's & a very old Joy of Cooking book. I collect old books- the older the better. The employee stocking the shelves was holding the book with love and I could see she really wanted it. She explained that employees are not allowed to purchase from there. I put the book in my basket and after she rang me up I told her I bought the book for her. I loved her surprise! Her cheeks turned red and she was so happy. You could light the sky with her smile. :) :) :)
Starting to know the city I live in. The woman at the library knows who me and my mom are and always says hi.
Such a pleasant thing- to gab with a stranger and share the same air for a few minutes.
Only recently have I started walking with my head up again, meeting eyes with strangers, feeling confident in my own skin. For so long I walked around entirely broken. Rushing when I went out on a rare day by myself. Scared I was going to have a meltdown or be too tired or in pain to go anywhere at all. For a long, long time it WAS like that. This, for my adventurous spirit, was most crushing. I felt the giant Fibro monster on my back at all times. Not simply the physical pain, but more crippling, the emotional. I was so nervous and afraid. So, so afraid. Somehow in recent months I have got my groove back, and I smile freely, I mosey, I live. I feel the pain of Fibromyalgia, I pay heed to it's demands, I feel the strangling of fatigue... but I DO when I can, and my oh my, it's a sensational thing! I am no longer terrified to go on a long drive (well, maybe not too far), get lost on purpose, and explore. Maybe now I can get to know North Carolina a little better. It's time, I think.
Crying at the thrill of simply seeing a movie. Earplugs in, tears streaming down my face. Such a small thing, such a treat. Watching talent unfold before my very eyes with people singing and moving and breathing life on that giant screen. Life... It's a miracle. I used to take it for granted. Going to a movie whenever I wanted. But now it's a treasure among a common day. I love that.
As I left the theatre the sun sat low in the sky and I got to grab a Starbucks and head home to ride my bicycle. Is this really my life? How can it be THIS grand in just the ordinary?
And this is what sickness has taught me... That life, in all of its forms (good, bad, & mundane), is precious and fleeting and so, so, so lovely.
After the pain and darkness of the last three years I finally understand the saying, "I have Fibromyalgia but it doesn't have me." I could never agree with that before, because truthfully, Fibromyalgia DID have me, and if I am not careful it could have me again. But after so much work, and miles of progress, I know now I can have a tangible life EVEN with illness.
There is still so much to be learned in this life on earth, and I am wide open to receive it. I saw this as I drove away from the theatre and as I read it I laughed. It's fitting because the space in my heart is vast and ready for all of the things to come... the happy, the sad, the ordinary.
Thank you, God. Thank you, thank you.
Psalm 36:5-9
Your love, Lord, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the highest mountains,
your justice like the great deep.
You, Lord, preserve both people and animals.
How priceless is your unfailing love, O God!
People take refuge in the shadow of your wings.
They feast on the abundance of your house;
you give them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.
Your love is in the little things...
With the buffet of sprinkling stars as I rode my bicycle around the block,the road pitch black but for a few sporadic street lamps. It was a little scary, and a lot of fun.
With the opening of my very favorite resturant, Olive Garden, opening in this little town. Making it that much more like home, where I spent so many hours with so many wonderful people eating those salty, greasy bread sticks, sharing lives.
With the parents you have blessed me with.
With this warm house to be safe in night after night.
Dear Life,
You thrill me.
Honest, you do.
Thursday, October 4, 2012
Thrills
Today Aaron put the tires on and I rode my bicycle for the first time ever! I hopped on, pajamas and all, and whipped around the block. The wind tossed my hair, the sun smiled on me, and my inner child danced with joy. Halfway around there was a little bit of an incline and I had to work a bit harder. By the time I climbed from my perch my knees shook like jello but I was grinning ear to ear. Now I just need a pretty little basket to collect my flowers and some fixin' on the rust stains.
Afterward I was determined to find my box of books that I just knew I had up in the attic. With this Fibro fog rolling in at all hours of everyday, I couldn't remember if I had gotten rid of these specific kids books (which I collect) before the move or if they were hiding around somewhere. In a moment of clarity I realized there were some that I had forgotten about, would surely never ever give away, and almost climbed that attic ladder in the wee hours to dig them out. Reason (otherwise known as Aaron) made me wait. So today I found them and threw each stack down the ladder as sweat poured down my face. I also brought down my beloved Cricket doll from childhood. I coveted this precious beauty for ages and on my birthday (I must have been 7 or 8 I think) I was blessed with that big blue box and my very own talking baby doll! My original doll had so much wear and tear from love, and one eye fell out of the socket and we gave her away. So, a few years ago I found a mint in box Cricket and claimed her as my own. Ah, memories from childhood are the sweetest.
And then a delicious parade of clouds! Cotton candy swirls dotting and filling the sky. I'd never seen a sunset quite like that in all of my days.
I was jonesin' to ride my darling Bella Blue again. Not too far! Just around the few houses surrounding us on this quiet little street.
And suddenly we were kids again.
Amazing what playing outside in the moonlight can do for a soul.
So there you have it. A treasure of a day. I am paying the Fibromyalgia price right now, but it was worth it. Oh was it worth it.
Goodnight lovely hearts.
Afterward I was determined to find my box of books that I just knew I had up in the attic. With this Fibro fog rolling in at all hours of everyday, I couldn't remember if I had gotten rid of these specific kids books (which I collect) before the move or if they were hiding around somewhere. In a moment of clarity I realized there were some that I had forgotten about, would surely never ever give away, and almost climbed that attic ladder in the wee hours to dig them out. Reason (otherwise known as Aaron) made me wait. So today I found them and threw each stack down the ladder as sweat poured down my face. I also brought down my beloved Cricket doll from childhood. I coveted this precious beauty for ages and on my birthday (I must have been 7 or 8 I think) I was blessed with that big blue box and my very own talking baby doll! My original doll had so much wear and tear from love, and one eye fell out of the socket and we gave her away. So, a few years ago I found a mint in box Cricket and claimed her as my own. Ah, memories from childhood are the sweetest.
And then a delicious parade of clouds! Cotton candy swirls dotting and filling the sky. I'd never seen a sunset quite like that in all of my days.
I was jonesin' to ride my darling Bella Blue again. Not too far! Just around the few houses surrounding us on this quiet little street.
And suddenly we were kids again.
Amazing what playing outside in the moonlight can do for a soul.
So there you have it. A treasure of a day. I am paying the Fibromyalgia price right now, but it was worth it. Oh was it worth it.
Goodnight lovely hearts.
Wednesday, October 3, 2012
Scenes From a Day
Today was busy, busy! My appointment went well. The mole infection is gone and I just need to have it checked every 3 months or so. Refill was prescribed, just need to wait a week or so to have it filled. The nurse I see is so awesome. Finally a medical professional who is nice!!!! Only took a few years. Aside from the Fibro Clinic and my old dermatologist in Vallejo... they were gems. Dropped off my application for YMCA financial assistance and will call back in a couple of days to see if I got approved. I hope so and then I can add swimming to my list of exercise! I did 8 straight days of walking, took a break, did two days, and am now taking a break today. It feels good. Oh, and Aaron got a tire for my inherited bike, who I have affectionately named Bella. Bella Blue because she is blue. I asked if we can get me a basket so I can pick flowers. I'm such a girl! ;)
Other errands went great! Found some records at the thrift store and a few more books. I swear my collection of classics is growing for a mere $25 a book! If I could I would go every single day of my life. Which reminds me, the library is having a book sale next week! My dream! I was just online looking for information on that last week and had no luck, so seeing the sign today was glorious.
Flaring today after being in a flare the last few days, and being out for a few hours today but my hopes are high to get rested and maybe treat myself to a movie on Friday. It's been a few months and I really want to see Pitch Perfect. I've got to wait to see Looper when the boy is off of work. Then next week we all might go to my favorite town, Wilmington! Can't wait!
My nephew was sent back to the hospital last night. Please pray for him as he is dealing with some heavy emotional stuff. Please pray for God to remind him of his significance and worth and for his depression to lift and for him to be filled with joy again. Thank you!
I can't believe it is October! My favorite month in all the year.
Other errands went great! Found some records at the thrift store and a few more books. I swear my collection of classics is growing for a mere $25 a book! If I could I would go every single day of my life. Which reminds me, the library is having a book sale next week! My dream! I was just online looking for information on that last week and had no luck, so seeing the sign today was glorious.
Flaring today after being in a flare the last few days, and being out for a few hours today but my hopes are high to get rested and maybe treat myself to a movie on Friday. It's been a few months and I really want to see Pitch Perfect. I've got to wait to see Looper when the boy is off of work. Then next week we all might go to my favorite town, Wilmington! Can't wait!
My nephew was sent back to the hospital last night. Please pray for him as he is dealing with some heavy emotional stuff. Please pray for God to remind him of his significance and worth and for his depression to lift and for him to be filled with joy again. Thank you!
I can't believe it is October! My favorite month in all the year.
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