Sleep was evasive last night. After his normal night meds, which include a sleeping pill, and a full dose of Nyquil, he finally fell asleep around 12:30 a.m. At that point, I couldn't sleep because I was too worried that he would wake up and I wouldn't realize it. I drifted in and out until 6:30 a.m., and I calculate I probably got a total of 3 non-consecutive hours of sleep. Needless to say we were both tired this morning.
Yet, he was intent on pushing through the grogginess and got ready to spend the day helping my dad. He says he feels okay, but I know his obsessive feelings are distracting him. He's still trying to make it through an entire day and told me not to worry about him (um, hello, is he new?).
I'm plugging away at the endless list of tasks at work, trying to focus as best I can. Being busy is a huge help at keeping me from thinking/dwelling. I certainly could use a nap though :)
Endless thoughts keep me worrying when I'm not distracted by work. Will he have a good day? Will he sleep tonight? Will he feel the need to run away? How is all of this affecting Kennadie? How much has she picked up on other than "daddy gets headaches." What if this medicine tweak doesn't work? What if something bad happens and he can't bounce back? Will he need to go back to the hospital? How would I get him there, when he hates it so much? How do we keep making everything work financially when we spend approximately $1,500 between medical insurance premiums, prescription costs, doctor office copays, etc.? Can we just take a weekend off from this disease? Just one blissfully happy, worry-free weekend?
Ahh, that feels better - I needed to write everything going through my head, just to clear my mind a bit, even if I don't have any of the answers. We will make it through because we always do. God provides and our faith is comforting. Solid family and friends keep us grounded and sane (well, as sane as we get!). So today is a good day so far, and we're working hard to keep it that way.
Tuesday, September 11, 2012
Monday, September 10, 2012
An exhausting battle
Everyday is new and with that everyday brings a different challenge. Somedays David wakes up, feels great, and struggles very little with his illness. In all aspects, some days are quite normal.
But many days are anything but. One day (pretty frequently) he struggles with the necessity of taking a cocktail of medications. Be it because of the side effects, the monotony of taking medication day after day, or just the craving to live a normal life.
One day he might wake up jittery and panicky, ready to crawl out of his skin. Those days he wants to run away and hide, but he can't hide from his own mind.
The next day he might wake up fatigued and achy from depression. These days he doesn't get out of bed, eat, or feel like there are reasons to keep fighting.
Today is a panicky, obsessive day, where he can't shut his mind down no matter how incredibly exhausted he feels. The use of his CES machine helps as it resets his alpha brain waves, but it doesn't give total relief.
I'm equally exhausted, not to mention sick to my stomach at the anguish I watch him endure. I pray and I research and I pray some more. I can't fix it and that pisses me off and breaks my heart at the same time. He's trying so hard to feel better and to make the best of each day. To that end, we can only do so much and have to leave the rest in God's hands. He just had another medication tweak. Fingers crossed that this will lead to better days.
But many days are anything but. One day (pretty frequently) he struggles with the necessity of taking a cocktail of medications. Be it because of the side effects, the monotony of taking medication day after day, or just the craving to live a normal life.
One day he might wake up jittery and panicky, ready to crawl out of his skin. Those days he wants to run away and hide, but he can't hide from his own mind.
The next day he might wake up fatigued and achy from depression. These days he doesn't get out of bed, eat, or feel like there are reasons to keep fighting.
Today is a panicky, obsessive day, where he can't shut his mind down no matter how incredibly exhausted he feels. The use of his CES machine helps as it resets his alpha brain waves, but it doesn't give total relief.
I'm equally exhausted, not to mention sick to my stomach at the anguish I watch him endure. I pray and I research and I pray some more. I can't fix it and that pisses me off and breaks my heart at the same time. He's trying so hard to feel better and to make the best of each day. To that end, we can only do so much and have to leave the rest in God's hands. He just had another medication tweak. Fingers crossed that this will lead to better days.
Monday, April 2, 2012
Is this what normal feels like??
So I just realized that it's been two months since my last post; eek! I never meant to go so long as these posts truly help me feel better about the daily struggles of David's illness. Though until the end of February, I was finishing school, so I was pretty overwhelmed. Now that I don't have homework to deal with, I can actually focus on all of the other things in life which have been sitting on the back burner. Thanks goodness, because the laundry situation is out of control, ha!
At the end of January, David started taking Lithium, which was something I had been wanting for years and we were both pretty excited about. Since that time the doctor has continued to "tweak" his dosage and there have been a few hiccups. Though, honestly, this has been the best medication choice we have made by far. It is interesting to see how different his behavior is on a day-to-day basis; he has been generally pretty stable. However a problem we have encountered is his trying to adapt to what "normal" feels like.
For David, there is manic and there is depressed. Never usually much of an in-between. He spent many years on the manic side (not to the extreme, but manic none-the-less) and likes how that feels. For those of you who don't know as much about mania, it's the state in which your brain produces more dopamine than it should creating a feeling of being "high" similar to cocaine use. To him, mania = happy. He likes to feel carefree and upbeat. He had no idea that the rest of the world lives in the state of "normal" most of the time and we're not all floating around on clouds of happy. Frankly, normal kinda sucks. To him, it really sucks. He thinks he's depressed but then realizes that he's not, he's just not manic. This reality took all the helium out of his balloon folks. But he's trying desperately to adjust because that's what he wants to do; live a "normal" life.
He did hit a minor depression last week as he was coming off a sinus infection. It seems whenever he gets physically sick, it takes a mental toll on him as well. Depression is evil. It takes every ounce of enthusiasm and flushes it down the toilet. It make him want to stay in bed all day without the slightest bit of interest in food, people, and activities. It makes me want to shake him until it goes away (FYI, that doesn't work).
So we take one day at a time. He pushes through a lot more than he ever has, which is a huge accomplishment. He doesn't ask me to leave work just to be with him because he's sad, or having a bad day. He usually only wants me to come home when he feels he's a danger to himself or cannot care for K; but again, this occurs less often. He's doing more around the house and found some hobbies that interest him. He takes excellent care of K and constantly reiterates that she keeps him going on the worst of days. Lately he's being talking more about feeling unaccomplished and unproductive. He beats himself up that I work while he can't and thinks he's failed our family. I tell him to shut up (nice, I know). But really, that's how he sees himself, not how I see him, and I can't feed into it or he'll lose it. We live by the motto "It is what it is" - we cannot change the past, we can only try to ensure the future doesn't follow the same course and we bust our asses to do so.
We've also decided that some of the fatigue he feels (while partially due to medications) might be alleviated by better eating habits and weight loss. So we are working together to eat healthier as a family and start exercising more. We'll keep taking each day as it comes and do the best we can to make it all work.
Pray, Hope, & Don't Worry ~ St. Padre Pio
At the end of January, David started taking Lithium, which was something I had been wanting for years and we were both pretty excited about. Since that time the doctor has continued to "tweak" his dosage and there have been a few hiccups. Though, honestly, this has been the best medication choice we have made by far. It is interesting to see how different his behavior is on a day-to-day basis; he has been generally pretty stable. However a problem we have encountered is his trying to adapt to what "normal" feels like.
For David, there is manic and there is depressed. Never usually much of an in-between. He spent many years on the manic side (not to the extreme, but manic none-the-less) and likes how that feels. For those of you who don't know as much about mania, it's the state in which your brain produces more dopamine than it should creating a feeling of being "high" similar to cocaine use. To him, mania = happy. He likes to feel carefree and upbeat. He had no idea that the rest of the world lives in the state of "normal" most of the time and we're not all floating around on clouds of happy. Frankly, normal kinda sucks. To him, it really sucks. He thinks he's depressed but then realizes that he's not, he's just not manic. This reality took all the helium out of his balloon folks. But he's trying desperately to adjust because that's what he wants to do; live a "normal" life.
He did hit a minor depression last week as he was coming off a sinus infection. It seems whenever he gets physically sick, it takes a mental toll on him as well. Depression is evil. It takes every ounce of enthusiasm and flushes it down the toilet. It make him want to stay in bed all day without the slightest bit of interest in food, people, and activities. It makes me want to shake him until it goes away (FYI, that doesn't work).
So we take one day at a time. He pushes through a lot more than he ever has, which is a huge accomplishment. He doesn't ask me to leave work just to be with him because he's sad, or having a bad day. He usually only wants me to come home when he feels he's a danger to himself or cannot care for K; but again, this occurs less often. He's doing more around the house and found some hobbies that interest him. He takes excellent care of K and constantly reiterates that she keeps him going on the worst of days. Lately he's being talking more about feeling unaccomplished and unproductive. He beats himself up that I work while he can't and thinks he's failed our family. I tell him to shut up (nice, I know). But really, that's how he sees himself, not how I see him, and I can't feed into it or he'll lose it. We live by the motto "It is what it is" - we cannot change the past, we can only try to ensure the future doesn't follow the same course and we bust our asses to do so.
We've also decided that some of the fatigue he feels (while partially due to medications) might be alleviated by better eating habits and weight loss. So we are working together to eat healthier as a family and start exercising more. We'll keep taking each day as it comes and do the best we can to make it all work.
Pray, Hope, & Don't Worry ~ St. Padre Pio
Friday, January 27, 2012
That's What I'm Talkin' About!
I'm rather excited today, because after over four years of battling with David about a certain medicine that I wanted him to try and to which he was EXTREMELY resistant, he has agreed to at least try. I won't lie, this has caused more than one battle between the two of us. Every doctor has recommended this medication and it has the highest proven results in those suffering from bipolar disorder. The drug is lithium. It has been FDA approved since 1974 and in the past 30+ years much has been learned about the proper dosages including the creation of an extended release tablet.
David's hesitation has always stemmed from his fear of the effects lithium can have on the body, particularly if you are not careful about your sodium and water intake. Of late I have been reading some fantastic books (Beyond Blue and An Unquiet Mind) which recount two individuals' personal struggles with bipolar and how they've overcome their most difficult times. While reading, particularly An Unquiet Mind, I found myself in shock that there was someone whose experiences mirrored David's so closely. It was like they were "bipolar twins" and I could have been reading about my husband's struggles instead. The authors in both books found that lithium was their "miracle drug" and allowed for a more normal life than was ever thought possible.
Hence my reason for pushing David once again on this issue. However, this time I came armed with research. I found case studies and lists of side effects and effective rate percentages, etc. I also read him passages from the books. To my complete and utter shock, he agreed to try it out. If I knew how, I would have been doing cartwheels down the hallway!! I was beyond ecstatic. We went to his psychiatrist (he happened to have an appointment scheduled that day) and told him our decision. Dr. S was as excited as I was and started treatment right away.
We will be monitoring David and any possible reactions closely and the dosage that was started is low, but as long as his tolerance for the drug is positive, then other meds will be reduced / eliminated while the lithium dosage increases. Yesterday, he woke up very hot and sweating, but he started drinking water and the doctor reduced a different medication and he began to feel better. He even had a burst of energy and started a clean-out of our storage items in the basement.
I am extremely hopeful, but not naive. Lithium may be the answer we have been waiting for, but I'm prepared in case it doesn't perform as we hope. We're taking it a day at time. Though all thoughts, good wishes, and prayers are certainly appreciated. My current mantra is "Please God, let this work!".
Pray, Hope & Don't Worry ~ St. Padre Pio
David's hesitation has always stemmed from his fear of the effects lithium can have on the body, particularly if you are not careful about your sodium and water intake. Of late I have been reading some fantastic books (Beyond Blue and An Unquiet Mind) which recount two individuals' personal struggles with bipolar and how they've overcome their most difficult times. While reading, particularly An Unquiet Mind, I found myself in shock that there was someone whose experiences mirrored David's so closely. It was like they were "bipolar twins" and I could have been reading about my husband's struggles instead. The authors in both books found that lithium was their "miracle drug" and allowed for a more normal life than was ever thought possible.
Hence my reason for pushing David once again on this issue. However, this time I came armed with research. I found case studies and lists of side effects and effective rate percentages, etc. I also read him passages from the books. To my complete and utter shock, he agreed to try it out. If I knew how, I would have been doing cartwheels down the hallway!! I was beyond ecstatic. We went to his psychiatrist (he happened to have an appointment scheduled that day) and told him our decision. Dr. S was as excited as I was and started treatment right away.
We will be monitoring David and any possible reactions closely and the dosage that was started is low, but as long as his tolerance for the drug is positive, then other meds will be reduced / eliminated while the lithium dosage increases. Yesterday, he woke up very hot and sweating, but he started drinking water and the doctor reduced a different medication and he began to feel better. He even had a burst of energy and started a clean-out of our storage items in the basement.
I am extremely hopeful, but not naive. Lithium may be the answer we have been waiting for, but I'm prepared in case it doesn't perform as we hope. We're taking it a day at time. Though all thoughts, good wishes, and prayers are certainly appreciated. My current mantra is "Please God, let this work!".
Pray, Hope & Don't Worry ~ St. Padre Pio
Monday, January 23, 2012
A day in the life
I thought it might be interesting to detail a typical (wow, did I just say typical) day in our life. However, the more I thought about it, the more I realized that I really need to detail two different typical days in our lives: depressed and normal. Because in all honestly that's how we live and we never know which day we are going to get until it's here - I liken it to ordering from eBay. There is a third type of day, manic, but thankfully those are fewer and further between, and it's very difficult to consider any part of that typical, though he exhibits some of the same traits each time (euphoria, lack of sleep, not eating, grandiose ideas, spending large sums of money, and when he starts crashing down, paranoia).
Day 1 (Normal)
It's probably best to start with a normal day, so you can see the difference in how his mood affects each day. Our typical weekday begins with both of us waking up, me getting ready for work and him getting K ready for school. He packs her lunch and daily snack, makes sure any paperwork that needs to go back to school is in her folder and that she gets dressed. Then he sends her to me so I can do her hair (he's tried, but it's so much easier when I do it, lol). Then he takes her to school and I head off to work.
He may decide to visit my dad at his office and help with some miscellaneous computer tasks, or he'll stay home and get some laundry done or run to the store (if we are in dire need of something). Otherwise, he tries to find things to occupy his time, like reading. Then he picks K up from school and spends time working with her on reading, or flashcards, or playing a game, until I get home from work. As long as we don't have any evening commitments, it's usually dinner, then a shower for K and then I get time with her before she goes to bed. We usually try to have some time just for us at the end of the night, even if it's just both of us in the same room while I do homework and he does whatever.
Day 2 (Depressed)
A depressed day starts out much differently. I get up by myself and take care of the entire morning routine including taking K to school. Then I go to work and pray that he'll be okay at home. He usually will sleep for most of the day or at least just lay in bed, not finding an interest in much of anything. I will call and check on him and often run home at lunch to make sure he eats something. I worry most of the day because I never know what to expect: is he going to feel like leaving on a whim, will he ask me to leave work early, what if he decides to stop taking his medicine? I put on my smile around him though, because one of us needs to be cheery, right?
On really bad days, I'll have to get someone to pick K up from school (thank God for that support network!) and then I'll get her after work. The evening is spent with me and K doing things with just the two of us and once she goes to bed it's a long night of talking about everything that is currently making him feel sad. Neither of us sleep much on these nights, but he makes up for it the next day while I'm back at work.
These days are hard on all of us. K knows daddy doesn't feel well, or "has a headache" and prays for him a lot. She even prays for him in prayer circle at school (love, love, love that she goes to Catholic school). She'll ask me when daddy will feel better, which breaks my heart because I honestly don't ever have a good answer for her. I try to keep things as normal as possible for her though, and I reassure her that daddy is going to be just fine (I think I'm often trying to convince myself more than her). I hate these days because I'm a fixer and it's hard not being able to talk or bs my way out of a problem (for the record, depression does not negotiate). Sometimes I'm resentful, not at David, but at the illness and the havoc it wreaks without any prejudice or care for those affected. Depression is evil, painful, and strips you of dignity, faith, and any hope of something better.
But we're here and we have to keep on going. God didn't put me on this Earth to give up because things aren't easy or how I envisioned them. We are a family of fighters and that is exactly what we will keep doing. I pray and talk to God quite a bit and used to get angry with Him for not answering my prayers and just making this all better. However, I've come to realize that it is not my place to question His plan and sometimes the answer to my prayers are not to be realized yet. I'm good with this (I can say that because it's been a good day). I still get angry at times, but know that He understands and truly believe He carries us through our most difficult times. I am thankful for all of my blessings and hope to be able to help others going through similar difficulties.
Until later. Pray, Hope, & Don't Worry ~ St. Padre Pio
Day 1 (Normal)
It's probably best to start with a normal day, so you can see the difference in how his mood affects each day. Our typical weekday begins with both of us waking up, me getting ready for work and him getting K ready for school. He packs her lunch and daily snack, makes sure any paperwork that needs to go back to school is in her folder and that she gets dressed. Then he sends her to me so I can do her hair (he's tried, but it's so much easier when I do it, lol). Then he takes her to school and I head off to work.
He may decide to visit my dad at his office and help with some miscellaneous computer tasks, or he'll stay home and get some laundry done or run to the store (if we are in dire need of something). Otherwise, he tries to find things to occupy his time, like reading. Then he picks K up from school and spends time working with her on reading, or flashcards, or playing a game, until I get home from work. As long as we don't have any evening commitments, it's usually dinner, then a shower for K and then I get time with her before she goes to bed. We usually try to have some time just for us at the end of the night, even if it's just both of us in the same room while I do homework and he does whatever.
Day 2 (Depressed)
A depressed day starts out much differently. I get up by myself and take care of the entire morning routine including taking K to school. Then I go to work and pray that he'll be okay at home. He usually will sleep for most of the day or at least just lay in bed, not finding an interest in much of anything. I will call and check on him and often run home at lunch to make sure he eats something. I worry most of the day because I never know what to expect: is he going to feel like leaving on a whim, will he ask me to leave work early, what if he decides to stop taking his medicine? I put on my smile around him though, because one of us needs to be cheery, right?
On really bad days, I'll have to get someone to pick K up from school (thank God for that support network!) and then I'll get her after work. The evening is spent with me and K doing things with just the two of us and once she goes to bed it's a long night of talking about everything that is currently making him feel sad. Neither of us sleep much on these nights, but he makes up for it the next day while I'm back at work.
These days are hard on all of us. K knows daddy doesn't feel well, or "has a headache" and prays for him a lot. She even prays for him in prayer circle at school (love, love, love that she goes to Catholic school). She'll ask me when daddy will feel better, which breaks my heart because I honestly don't ever have a good answer for her. I try to keep things as normal as possible for her though, and I reassure her that daddy is going to be just fine (I think I'm often trying to convince myself more than her). I hate these days because I'm a fixer and it's hard not being able to talk or bs my way out of a problem (for the record, depression does not negotiate). Sometimes I'm resentful, not at David, but at the illness and the havoc it wreaks without any prejudice or care for those affected. Depression is evil, painful, and strips you of dignity, faith, and any hope of something better.
But we're here and we have to keep on going. God didn't put me on this Earth to give up because things aren't easy or how I envisioned them. We are a family of fighters and that is exactly what we will keep doing. I pray and talk to God quite a bit and used to get angry with Him for not answering my prayers and just making this all better. However, I've come to realize that it is not my place to question His plan and sometimes the answer to my prayers are not to be realized yet. I'm good with this (I can say that because it's been a good day). I still get angry at times, but know that He understands and truly believe He carries us through our most difficult times. I am thankful for all of my blessings and hope to be able to help others going through similar difficulties.
Until later. Pray, Hope, & Don't Worry ~ St. Padre Pio
Wednesday, January 18, 2012
Quitting smoking: Take 35
If any of you are smokers, you can surely empathize with David on the difficulties of quitting. I estimate this is his 35th time trying to quit, though I suspect I may have under-counted. As someone without an addictive personality, I cannot fully understand why it is so hard, but I get the gist of it. It is not just a mental addiction, but a physical one as well.
If you've ever witnessed first-hand a person trying to quit, it is not a pretty site. This is particularly true for those with a mental illness. Research shows that the percentage of those with a mental illness who smoke is as high as 50%. Nicotine increases the levels of dopamine released into the brain much the same way as cocaine. For an individual who is bi-polar, this creates a happy feeling they are constantly trying to attain. So when smoking a cigarette makes David feel better in a short eight seconds after taking the first drag, it makes sense that he was up to a pack a day.
Obviously, giving up something that provides relief from a constant feeling of sadness wouldn't be anyone's first choice. However, David wants to live a healthier, smoke-free life, and has determined nicotine makes his meds less effective. So, once again we embark on this journey.
Since the nicotine has an effect on his dopamine levels and the workings of his meds, it makes sense that the absence of nicotine will have an equal and opposite effect. The withdrawal (even with the substitution of a lower-dose e-cigarette) is horrible. He literally acts like he is detoxing from hard-core drugs. He's irritable, hot and cold, has headaches, and his mood fluctuates faster than a hummingbird's wings.
We are in day two of withdrawal (or as I call it, stay away from Mr Grumpy) and it is going as wonderfully as you would expect. I'm elated that he is quitting, and trying to be a cheerleader as he is adamant that this time is for good (God help us we cannot go through this again!). They say it takes 72 hours to detox...only 40 hours to go! I'll let you know if we make it, though I have faith that God will carry us through. We will take any prayers you want to send our way :)
Until later. Pray, Hope, & Don't Worry ~ St. Padre Pio
If you've ever witnessed first-hand a person trying to quit, it is not a pretty site. This is particularly true for those with a mental illness. Research shows that the percentage of those with a mental illness who smoke is as high as 50%. Nicotine increases the levels of dopamine released into the brain much the same way as cocaine. For an individual who is bi-polar, this creates a happy feeling they are constantly trying to attain. So when smoking a cigarette makes David feel better in a short eight seconds after taking the first drag, it makes sense that he was up to a pack a day.
Obviously, giving up something that provides relief from a constant feeling of sadness wouldn't be anyone's first choice. However, David wants to live a healthier, smoke-free life, and has determined nicotine makes his meds less effective. So, once again we embark on this journey.
Since the nicotine has an effect on his dopamine levels and the workings of his meds, it makes sense that the absence of nicotine will have an equal and opposite effect. The withdrawal (even with the substitution of a lower-dose e-cigarette) is horrible. He literally acts like he is detoxing from hard-core drugs. He's irritable, hot and cold, has headaches, and his mood fluctuates faster than a hummingbird's wings.
We are in day two of withdrawal (or as I call it, stay away from Mr Grumpy) and it is going as wonderfully as you would expect. I'm elated that he is quitting, and trying to be a cheerleader as he is adamant that this time is for good (God help us we cannot go through this again!). They say it takes 72 hours to detox...only 40 hours to go! I'll let you know if we make it, though I have faith that God will carry us through. We will take any prayers you want to send our way :)
Until later. Pray, Hope, & Don't Worry ~ St. Padre Pio
Sunday, January 15, 2012
All by myself
I should preface this by stating that I harbor no resentment or hard feelings about the following. I've learned to accept this as God's will. I sincerely love David for who he is, and understand that he is controlling his illness to the best of his ability.
One of the biggest struggles I've had since the onset of David's illness is the times when I feel like a single parent. Most often this occurs when there is an event that we need to attend. For example a birthday party, a school function, a t-ball game, etc. While he doesn't miss all of these, he's missed more than he's attended. This stems from his social anxiety. If he is not feeling well, it is very difficult for him to be in a social setting that includes lots of activity or people, as he becomes over-stimulated.
In the beginning, I would get pretty upset feeling as though I had to do everything on my own and that he was missing out on our daughter's childhood. I didn't want him to look back years from now and regret not being there. However, as time passed, I realized that I was just making things worse by forcing the issue.
For one, he felt guilty enough and didn't need me adding additional stress. Secondly, his health deteriorated when he was in an overly stressful situation. So I had to ask myself what was more important: David being at every event even if by force, or his overall health. I'm sure you can see that the decision wasn't really that hard for me.
The problem then came from the outside. Friends and family with whom we hadn't shared the full extent of his condition, or just didn't understand (believe me that's the hardest part) asked where he was. Or they gave me the look that said "really? He can't come to a t-ball game?" I wanted to scream and say, "Yes, really! He also didn't get out of bed yesterday, and only ate because I forced him to! He hasn't left the house in the three days, and I'm sick to my stomach with worry. Back the hell off!" But I didn't because they didn't know, so I put on my let's-pretend-everything's-okay smile and went about my day.
I record any functions that he really would prefer to attend, like K's Christmas program last year, and we watch them together as a family so he doesn't feel left out. I've gotten used to going to things by myself and usually don't feel alone because of the family and friends in attendance.
Something I'm still trying to work through is missing out on adult social functions, like get togethers with friends, or concerts I've had a ticket to for months, because not only is he not up to going, but he's not feeling healthy enough to be alone. I won't lie, this gets hard. I'm still bummed about the Sugarland and Katy Perry concerts and the numerous barbecues and game nights I've missed. But again, I can't go back and change that, nor can I ensure it won't happen again. I've chosen what's more important to me, which will always be my family and our health.
I'm certainly not looking for pity as I have been very blessed. There are so many people with far bigger problems, that it would be disgraceful for me to feel unhappy with my life. I know a family who lost their 18-month old daughter to a horrific battle with cancer and another who lost their husband and father to his second battle with cancer. My husband and daughter are still here for me to love and spend all of my days with. I couldn't be more thankful for all of my blessings.
Pray, Hope, & Don't Worry ~ St. Padre Pio
One of the biggest struggles I've had since the onset of David's illness is the times when I feel like a single parent. Most often this occurs when there is an event that we need to attend. For example a birthday party, a school function, a t-ball game, etc. While he doesn't miss all of these, he's missed more than he's attended. This stems from his social anxiety. If he is not feeling well, it is very difficult for him to be in a social setting that includes lots of activity or people, as he becomes over-stimulated.
In the beginning, I would get pretty upset feeling as though I had to do everything on my own and that he was missing out on our daughter's childhood. I didn't want him to look back years from now and regret not being there. However, as time passed, I realized that I was just making things worse by forcing the issue.
For one, he felt guilty enough and didn't need me adding additional stress. Secondly, his health deteriorated when he was in an overly stressful situation. So I had to ask myself what was more important: David being at every event even if by force, or his overall health. I'm sure you can see that the decision wasn't really that hard for me.
The problem then came from the outside. Friends and family with whom we hadn't shared the full extent of his condition, or just didn't understand (believe me that's the hardest part) asked where he was. Or they gave me the look that said "really? He can't come to a t-ball game?" I wanted to scream and say, "Yes, really! He also didn't get out of bed yesterday, and only ate because I forced him to! He hasn't left the house in the three days, and I'm sick to my stomach with worry. Back the hell off!" But I didn't because they didn't know, so I put on my let's-pretend-everything's-okay smile and went about my day.
I record any functions that he really would prefer to attend, like K's Christmas program last year, and we watch them together as a family so he doesn't feel left out. I've gotten used to going to things by myself and usually don't feel alone because of the family and friends in attendance.
Something I'm still trying to work through is missing out on adult social functions, like get togethers with friends, or concerts I've had a ticket to for months, because not only is he not up to going, but he's not feeling healthy enough to be alone. I won't lie, this gets hard. I'm still bummed about the Sugarland and Katy Perry concerts and the numerous barbecues and game nights I've missed. But again, I can't go back and change that, nor can I ensure it won't happen again. I've chosen what's more important to me, which will always be my family and our health.
I'm certainly not looking for pity as I have been very blessed. There are so many people with far bigger problems, that it would be disgraceful for me to feel unhappy with my life. I know a family who lost their 18-month old daughter to a horrific battle with cancer and another who lost their husband and father to his second battle with cancer. My husband and daughter are still here for me to love and spend all of my days with. I couldn't be more thankful for all of my blessings.
Pray, Hope, & Don't Worry ~ St. Padre Pio
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