When I was first struck with this huge change in my health, I did not go on vacations for years. I did not want to be in an environment that was uncertain, didn't want to be limited by my abilities in doing the activities offered. I certainly didn't want my household to spend the money on something neither one of us could fully enjoy. I wonder now if that fear alone contributed to how miserable those first few years were for me. Change of scenery is so important. Doing something different once in a while is so special. It creates memories. Those memories supply our minds with things to dwell on when we get back to the regular day to day life. Yesterday, for example, I was in just monumental physical pain all day. A day like that can mess with your head if you let it. It can say "oh, you won't be able to sleep or get comfortable in a hotel room. You won't be able to do this or that in your wheelchair. Hubby will be burdened with helping and attending to you. You won't enjoy it." That is powerful because it is so believable. So probable, if you let it be. It's just fear. Fear of the uncertain. I have come to grips with living every day, hour-to-hour with uncertainty. I am no longer afraid to make plans, but I make sure they are possible to cancel and get refunds. Further, I rarely cancel them. This is my only life. If I never do anything, go anywhere, because of this pain, frankly, it isn't much of one. I've discovered that adventure is in perspective. What is a full day outing and adventurous to me isn't the same as it is for you or for many. That's when I realize how horrible it is to compare myself, my life with others. It's dishonest and disrespectful to me. I am my own. It is apples and oranges. I am entirely unique and so my vacation experiences will be entirely unique. Will they be the ideal experiences of the TV commercials? No. Will there be huge and uncomfortable obstacles in my path? Count on it. Is is still worth doing? Blessedly, yes, yes, yes. Part of getting through yesterday with my head on straight was the fact that I have photos of our few most recent vacations all over my house. So seeing them reminds me that I can go places and enjoy the world at large. I can leave these walls safely and fly and ride, and figure out how to successfully get enough sleep. The simple fact is that whatever pain is present in the traveling, would likely still have been present had I stayed home. So, as I look forward to next week, to seeing new places and getting together with family, I am not afraid. I am comfortable not knowing what I will feel like. Fully aware that the answer might be like crap on a cracker. I will start making my lists today. I will look up the weather like "regular" people do. I will write checks to the pet-sitters. I will do small things each day to try to prepare because I won't be able to do it all at one time the day before. I am not afraid of being a disappointment to anyone I visit with. I am comfortable in the knowledge that they love me and hope they know it is hard to interact with me sometimes. Frankly, it is quite hard for me to interact with myself sometimes, which is profoundly scary. I know that whatever happens, I will survive the discomfort. I will be cared for and even in worst case scenarios where I picture myself entirely helpless, I have grown so close to the Lord that I know I will never be abandoned. There is no circumstance imaginable, day-to-day or in an unknown place, where He will not protect me from evil. My body may feel horrible things but, my body is only one aspect of me. I am more than my painful body. And I am sooooooo looking forward to this vacation.
Grateful that there are people in this world who love me and that I have the means to get to them and to expose my mind to different things and places. Grateful that I am walking this morning.
Have happy happy happy days. Decide to.
Monday, February 29, 2016
Tuesday, February 23, 2016
Rain and hope
Super short and sweet wish today. For the first time in a LONG time, I had to get straight out of bed and into my wheelchair. And I'm so glad. How could I be glad of such a thing? Because I have an idea, its just a hunch mind you, that if my brain is so busy with all this pain in my body, I might not have a migraine today to deal with. I just might slide by with debilitating muscle and joint pain. Easy-peasy. lol
In all things, give thanks,
Have happy days
M
Post Script: In fact, I was correct yesterday in my hunch. I was in a LOT of physical pain all day but, none was ever in my head. I was so grateful. But today, even though it's not wet out, it's still pretty cool and by mid-morning, pain is holding both my hands. Worse, I feel it pulling me emotionally. I am grieving the fact that there's this trade off. I miss my old health so much. I am so sad today. And, knowing that if I let myself cry, which I need and want to do, it will probably trigger a migraine. lol.
M
In all things, give thanks,
Have happy days
M
Post Script: In fact, I was correct yesterday in my hunch. I was in a LOT of physical pain all day but, none was ever in my head. I was so grateful. But today, even though it's not wet out, it's still pretty cool and by mid-morning, pain is holding both my hands. Worse, I feel it pulling me emotionally. I am grieving the fact that there's this trade off. I miss my old health so much. I am so sad today. And, knowing that if I let myself cry, which I need and want to do, it will probably trigger a migraine. lol.
M
Wednesday, February 3, 2016
You are my sunshine, my only sunshine
On February 2nd, Migraine-zilla of 2016 finally broke. I had NO headache that day. And I think I may not have stopped smiling until I was asleep again. When Timothy got home, I ran through the house dancing around and jumped up on him kissing him. He said that he couldn't remember the last time I smiled like that. See, I was right. It did pass. It was a season. And even if it, rather more realistically when it returns, as long as I can remember that key element, I will be ok.
It was proof to me that just as we, humanity, have the ability to forget how pain feels, we also have the ability to forget how wellness feels. I could not remember ever in my 47 years of life having a day as glorious as yesterday. Truly.
This update today is just going to be short because I am determined to sweep my floors today. But, I wanted to say that I asked my doc if I could try my hydrocodone for the pain because I had been in the 9 out of 10 range for days. He said yes, and after two doses, voila. I could go out in the SUNSHINE!!!!!!! Now, it is my deep desire not to use a narcotic for my pain, to cope as best I can without opiates. But, there is a HUGE amount to be said for quality of life. My quality was below what I am willing to sacrifice.
When I used to work in a group home for the Pinellas County ARC with elderly mentally handicapped folks, Jessie, who had Down's syndrome and I were particularly close. She was in her 50's which is quite old for that particular illness. We'd stand and hold both hands together and sing to each other the You Are My Sunshine song. She's shining down on me now for sure.
Grateful that for 2 mornings in a row, I have not had to medicate for head pain nor put dark glasses on to keep beautiful light at bay. Grateful to feel normal and well, besides an ache or pain here and there. Grateful that I actually forgot how it feels so I am actually surprised as to this new blessing.
Have happy, happy, happy, days. Trust in HIM. HE will not abandon us.
It was proof to me that just as we, humanity, have the ability to forget how pain feels, we also have the ability to forget how wellness feels. I could not remember ever in my 47 years of life having a day as glorious as yesterday. Truly.
This update today is just going to be short because I am determined to sweep my floors today. But, I wanted to say that I asked my doc if I could try my hydrocodone for the pain because I had been in the 9 out of 10 range for days. He said yes, and after two doses, voila. I could go out in the SUNSHINE!!!!!!! Now, it is my deep desire not to use a narcotic for my pain, to cope as best I can without opiates. But, there is a HUGE amount to be said for quality of life. My quality was below what I am willing to sacrifice.
When I used to work in a group home for the Pinellas County ARC with elderly mentally handicapped folks, Jessie, who had Down's syndrome and I were particularly close. She was in her 50's which is quite old for that particular illness. We'd stand and hold both hands together and sing to each other the You Are My Sunshine song. She's shining down on me now for sure.
Grateful that for 2 mornings in a row, I have not had to medicate for head pain nor put dark glasses on to keep beautiful light at bay. Grateful to feel normal and well, besides an ache or pain here and there. Grateful that I actually forgot how it feels so I am actually surprised as to this new blessing.
Have happy, happy, happy, days. Trust in HIM. HE will not abandon us.
Wednesday, January 27, 2016
The more pain there is, the more you can handle
So, about 5 minutes after waking up this morning, the full bloom migraine exposed itself. I told myself last night that blogging about this and forcing myself to look at a bright computer screen was not important enough for the discomfort but, I have decided now that I need to document my success. For me, if for no one else.
I have had some size of a migraine every day since Jan 6, 21 days ago. And between early December and Jan 6, most days. I didn't document them. I rate my migraines in the visual of a rose. I know, its wierd, something so luxurious and beautiful and treasured, and yet it fits my headache metaphor so fully that I hold onto it. Mostly when I talk to other people, I describe my migraines in sizes of food. Almond sized and growing. Egg sized and steady. Grapefruit sized, watermelon. You get it, I'm sure.
In previous years, I have had about 15-20 min of lead time from when I first feel one coming until it is bloomed. I have time to medicate and try to nip it. None of my medicines work currently. I have a doctor appointment on Feb. 11. I also used to be able to get some relief from cold towels around my head. Now, nothing. And, finally, I used to be able to sleep them off and wake up newish. Again, denied.
I now have the experience of sledgehammer migraines. If I am lucky enough to be without one for an hour or two, I can obtain one by blinking, it seems. Wham. And, its relatively blinding. Also, it inhibits my mobility further than just any bodily pain will do.
Trying so hard to keep us in clean dishes, clean clothes, fed pets, clean litter, clean my own hair and body, those things have to be scrambled through in the first 20 minutes of being awake in the morning. Also, while the migraine is just coming out of rosebud size. About a walnut, or small egg.. Already wearing 2 sets of sunglasses in my home. All the shades are drawn. I wear my prescription sunglasses always now. My regulars are put away.
I did get the peace of a small nap last evening for about 45 minutes at 7 pm. Then I woke, and did my bedtime things. Not being able to fall asleep again because of the head pain, I thought well, what the hell? So, I came out and, in the complete darkness, and with my shades on, did a load of dishes, and two more loads of laundry. Folded all my laundry and cleaned my kitchen counters, appliances, back splash, etc. This is with a migraine about orange sized. But. without the harassment of light or noise, I could do it peacefully. There was nothing to retreat from and I found myself relaxed in my pain. So, I was able to get up this morning with all that done. It was fabulous because, about 10 steps out of bed (specifically to my bedroom door) the sledgehammer hit and I'm in full bloom. So, now I just had to get us all fed, which I find I can do without undue suffering. The beauty of having lived in so much pain for so long, is that I can live in a lot of pain currently. No fear. No worry attached to it. Just making my way through the day. That's why it's important for me to sit down and stare at this bright screen. I need to see that it can be done. That I have done it. I have the kind of head pain that literally would have sent me to the ER previously and would do many folks but, I am finding ways to cope. And I am stripping it of emotional power. Key element.
I fed us all, did litter box duty, brushed my teeth, washed my face, and had 3 somewhat coherent conversations with 2 doctors offices so far today and I am writing this.
Grateful that I have such a safe, comfortable environment to live in. Grateful to be supported by a loving and understanding person who never asks more of me than I'm able to give. Grateful for those who love me and pray for me, knowing that these headaches will pass sometime. They must. To everything there is a season. This is clearly migraine season. lol Off to lie in silent darkness and convo with The Big Guy.
Have happy, happy days.
I have had some size of a migraine every day since Jan 6, 21 days ago. And between early December and Jan 6, most days. I didn't document them. I rate my migraines in the visual of a rose. I know, its wierd, something so luxurious and beautiful and treasured, and yet it fits my headache metaphor so fully that I hold onto it. Mostly when I talk to other people, I describe my migraines in sizes of food. Almond sized and growing. Egg sized and steady. Grapefruit sized, watermelon. You get it, I'm sure.
In previous years, I have had about 15-20 min of lead time from when I first feel one coming until it is bloomed. I have time to medicate and try to nip it. None of my medicines work currently. I have a doctor appointment on Feb. 11. I also used to be able to get some relief from cold towels around my head. Now, nothing. And, finally, I used to be able to sleep them off and wake up newish. Again, denied.
I now have the experience of sledgehammer migraines. If I am lucky enough to be without one for an hour or two, I can obtain one by blinking, it seems. Wham. And, its relatively blinding. Also, it inhibits my mobility further than just any bodily pain will do.
Trying so hard to keep us in clean dishes, clean clothes, fed pets, clean litter, clean my own hair and body, those things have to be scrambled through in the first 20 minutes of being awake in the morning. Also, while the migraine is just coming out of rosebud size. About a walnut, or small egg.. Already wearing 2 sets of sunglasses in my home. All the shades are drawn. I wear my prescription sunglasses always now. My regulars are put away.
I did get the peace of a small nap last evening for about 45 minutes at 7 pm. Then I woke, and did my bedtime things. Not being able to fall asleep again because of the head pain, I thought well, what the hell? So, I came out and, in the complete darkness, and with my shades on, did a load of dishes, and two more loads of laundry. Folded all my laundry and cleaned my kitchen counters, appliances, back splash, etc. This is with a migraine about orange sized. But. without the harassment of light or noise, I could do it peacefully. There was nothing to retreat from and I found myself relaxed in my pain. So, I was able to get up this morning with all that done. It was fabulous because, about 10 steps out of bed (specifically to my bedroom door) the sledgehammer hit and I'm in full bloom. So, now I just had to get us all fed, which I find I can do without undue suffering. The beauty of having lived in so much pain for so long, is that I can live in a lot of pain currently. No fear. No worry attached to it. Just making my way through the day. That's why it's important for me to sit down and stare at this bright screen. I need to see that it can be done. That I have done it. I have the kind of head pain that literally would have sent me to the ER previously and would do many folks but, I am finding ways to cope. And I am stripping it of emotional power. Key element.
I fed us all, did litter box duty, brushed my teeth, washed my face, and had 3 somewhat coherent conversations with 2 doctors offices so far today and I am writing this.
Grateful that I have such a safe, comfortable environment to live in. Grateful to be supported by a loving and understanding person who never asks more of me than I'm able to give. Grateful for those who love me and pray for me, knowing that these headaches will pass sometime. They must. To everything there is a season. This is clearly migraine season. lol Off to lie in silent darkness and convo with The Big Guy.
Have happy, happy days.
Wednesday, January 20, 2016
Tears from joy, my beauty secret
https://www.facebook.com/StevenJoTV/videos/1188786691150807/?theater
Above is the link to the clip of today's joyful tears. I love to cry joyful tears, it feels like I'm leaking silk or something. But, unfortunately, even though I have the life situation to be able to do it anytime, since I don't have to work or raise children, it can bring on a lot of pain. So, while it feels like the most beautiful gift to be in the presence of the love of the Lord, as the above video made me feel, it also keeps me aware of my challenges and limitations. It's nice, no, more than nice, to find that my list of blessings and my list of challenges match. I am. I try each day to grow closer to Him. I use the energy I find during each of my days to do what I can to keep myself fed and keep us in clean clothes. If I have more, I do more. But, I no longer lament. I no longer wish. I no longer yearn. Instead, I pray. Really its more like mental chatting than prayer. I'm not too much into the formal kind, unless my thinking is so impaired that I cannot come up with my own original thoughts. Then, I always rely on my Hail Marys.
I got one chore done today which I've tried to get done since Christmas. And I'm happy with it. New tags for my little essential oil bags on Etsy. Not a very substantial accomplishment for some out there, but for me quite big, and I'm quite proud. Others can have different sources of pride. Every single one of us has a burden. Mine is physically painful. I didn't come from a broken home, I have never been homeless or hungry. I wasn't born into a country at war. I have a mind that can learn. I believe in God. I am not addicted to anything. (OK, maybe I am addicted to 10 mg of Valium at bedtime. Can't sleep without it at all nowadays. Also, addicted to Mozart in the Jungle on Amazon Prime.) I am stable mentally and emotionally. Physically, I have taken great care of my body during my life and I enjoy the fact that I look much as I did when I was 30, seventeen years ago. But, I do live in pain. That is my thing. Sure, there are some other things in my past which I have battle scars from to prove my fight. But, in fact, they are on the blessing list too. Those battles built me. These battles now continue to build. And a video like the one above just gave my skyscraper another floor. It affirms my life.
Grateful that I have the capacity to love others and to receive love in return. Grateful for the humility learned by dependence, even if it had to be forced on me.
Have happy happy days
Above is the link to the clip of today's joyful tears. I love to cry joyful tears, it feels like I'm leaking silk or something. But, unfortunately, even though I have the life situation to be able to do it anytime, since I don't have to work or raise children, it can bring on a lot of pain. So, while it feels like the most beautiful gift to be in the presence of the love of the Lord, as the above video made me feel, it also keeps me aware of my challenges and limitations. It's nice, no, more than nice, to find that my list of blessings and my list of challenges match. I am. I try each day to grow closer to Him. I use the energy I find during each of my days to do what I can to keep myself fed and keep us in clean clothes. If I have more, I do more. But, I no longer lament. I no longer wish. I no longer yearn. Instead, I pray. Really its more like mental chatting than prayer. I'm not too much into the formal kind, unless my thinking is so impaired that I cannot come up with my own original thoughts. Then, I always rely on my Hail Marys.
I got one chore done today which I've tried to get done since Christmas. And I'm happy with it. New tags for my little essential oil bags on Etsy. Not a very substantial accomplishment for some out there, but for me quite big, and I'm quite proud. Others can have different sources of pride. Every single one of us has a burden. Mine is physically painful. I didn't come from a broken home, I have never been homeless or hungry. I wasn't born into a country at war. I have a mind that can learn. I believe in God. I am not addicted to anything. (OK, maybe I am addicted to 10 mg of Valium at bedtime. Can't sleep without it at all nowadays. Also, addicted to Mozart in the Jungle on Amazon Prime.) I am stable mentally and emotionally. Physically, I have taken great care of my body during my life and I enjoy the fact that I look much as I did when I was 30, seventeen years ago. But, I do live in pain. That is my thing. Sure, there are some other things in my past which I have battle scars from to prove my fight. But, in fact, they are on the blessing list too. Those battles built me. These battles now continue to build. And a video like the one above just gave my skyscraper another floor. It affirms my life.
Grateful that I have the capacity to love others and to receive love in return. Grateful for the humility learned by dependence, even if it had to be forced on me.
Have happy happy days
Monday, December 28, 2015
Flux and Lala
Symptoms are in a state of flux, as always. My super great neuro doc did prescribe a new med for migraines (happens to be the exact mixture of Excedrin Migraine but in prescription strength, including all that caffeine). The first time I took it, I slept only 4 hours that night. I need not go on about how much a disaster the next few days were. And further, it didn't work on the migraines. I'm a caffeine-free girl. It doesn't like me, I don't like it. If we cohabitate, we do so in dark chocolate, and in small doses. That's it. So, a few days of the last week were spent in bed with full on big bloomed migraines. Yesterday, Tim suggested trying the old med again, and what do you know, it worked! No headache so far today.
I know a woman who has the disease I have and is homeless. I cannot tell you how my heart hurts for her. I think of what it takes for me, even within these warm walls and on cushy furniture, to get my body comfortable. And then I think of the fact that she was living out of her car the last time we saw each other. That was a couple months ago. She could no longer work, as many with fibro end up having to stop. Her children had to go and live with their father in another town. She literally had nothing coming in to feed herself, there were no medications, etc. I cannot even get in touch with her because her phone was a pay as you go, and she rarely turned it on in order to save minutes. No one we mutually know has heard anything from or about her. Imagine for a moment the sheer despair. Its like Jesus in the garden of Gethsemane. She is alone. She hurts. She's probably always hungry. There isn't an end to the pain in sight. I pray for her all the time. I mean, I have a home, electricity for heat, abundant food and water, a bathroom and bed of my own, medicine, doctors I can pay for, a spouse who supports and understands me and loves me, family who treasure me, friends who check on me. And, it still takes regular therapy for me to keep my emotional head above water with this bucket of stuff I have. Can you imagine carrying this bucket without ANY of that? Please pray for her with me. Her name is Lala.
Today I'm grateful for the fact that I am not out in the cold winter wind, that I was not impacted by the tornadoes, and that Christ came to save us all.
EDIT:
Lala was in touch with me about a week ago and is living in another state with some family members. She is not out in the elements, and is even in therapy. Thank you Lord!
I know a woman who has the disease I have and is homeless. I cannot tell you how my heart hurts for her. I think of what it takes for me, even within these warm walls and on cushy furniture, to get my body comfortable. And then I think of the fact that she was living out of her car the last time we saw each other. That was a couple months ago. She could no longer work, as many with fibro end up having to stop. Her children had to go and live with their father in another town. She literally had nothing coming in to feed herself, there were no medications, etc. I cannot even get in touch with her because her phone was a pay as you go, and she rarely turned it on in order to save minutes. No one we mutually know has heard anything from or about her. Imagine for a moment the sheer despair. Its like Jesus in the garden of Gethsemane. She is alone. She hurts. She's probably always hungry. There isn't an end to the pain in sight. I pray for her all the time. I mean, I have a home, electricity for heat, abundant food and water, a bathroom and bed of my own, medicine, doctors I can pay for, a spouse who supports and understands me and loves me, family who treasure me, friends who check on me. And, it still takes regular therapy for me to keep my emotional head above water with this bucket of stuff I have. Can you imagine carrying this bucket without ANY of that? Please pray for her with me. Her name is Lala.
Today I'm grateful for the fact that I am not out in the cold winter wind, that I was not impacted by the tornadoes, and that Christ came to save us all.
EDIT:
Lala was in touch with me about a week ago and is living in another state with some family members. She is not out in the elements, and is even in therapy. Thank you Lord!
Tuesday, December 15, 2015
Great Wake Up
So, this morning, I was gifted a wonderful dream. Instead of describing it, I'm going to just relay its effect on me. I woke up twice during the dream and was determined to go back to sleep to it, and both times I was successful. I can remember almost all of it, and I keep bringing it back to the front of my mind, trying to concrete it in long-term memory. The gist is that I am loved and taken care of in a way infinitely more than my human words can convey, and by someone who is the best parts of me, only x 1000. At a distance it can be seen as me being controlled by this someone, but it isn't control as much as it is that my situation is literally ideal for me. Built and functioning for me. Populated for me. Made for me. A dream that left me with a knowing of God. A knowing that my faith in Him is what He wants it to be.
I now face this day with such a feeling of being loved that I want to just hug about 100 people. Well, I have access to no people here and now. I suppose I could go next door but, I'm not going to. I have hugged my dog, and I had to give the cat her morning injection so, she's still a bit peeved at me. I have never been surfing, never ridden a real tangible wave like that. This feels like I imagine that would feel. I don't have extra energy, in fact, if I walk the dog at all, it will be a short one. But I do have extra spirit. I feel full. The tank is full.
The true beauty of this is that my day to day life is wrought with constant changes that are sometimes hard to adjust to and can be super frustrating. With a tank so full, I have fuel to help me endure. It won't put out fires, but it will aid me in getting to the other side of them. I will still live with whatever my body throws at me, and the neurons will fire when the neurotransmitters emit, and it will hurt but, in the scope of my life, it is small. I have a spirit-filled tank today. And I am so, so grateful.
Praying everyone I love can have at least one similar morning. And not only have it, but take time to recognize and appreciate it.
Have happy, happy days!
I now face this day with such a feeling of being loved that I want to just hug about 100 people. Well, I have access to no people here and now. I suppose I could go next door but, I'm not going to. I have hugged my dog, and I had to give the cat her morning injection so, she's still a bit peeved at me. I have never been surfing, never ridden a real tangible wave like that. This feels like I imagine that would feel. I don't have extra energy, in fact, if I walk the dog at all, it will be a short one. But I do have extra spirit. I feel full. The tank is full.
The true beauty of this is that my day to day life is wrought with constant changes that are sometimes hard to adjust to and can be super frustrating. With a tank so full, I have fuel to help me endure. It won't put out fires, but it will aid me in getting to the other side of them. I will still live with whatever my body throws at me, and the neurons will fire when the neurotransmitters emit, and it will hurt but, in the scope of my life, it is small. I have a spirit-filled tank today. And I am so, so grateful.
Praying everyone I love can have at least one similar morning. And not only have it, but take time to recognize and appreciate it.
Have happy, happy days!
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