A friend shared this article on parenting with chronic illness with me and it really struck a chord. Made me want to weep with empathy for all going through this type of experience. Made me want to be gentler on myself. Be easier on my family.
I would imagine that the people most of us with chronic illness are surrounded by are those that are well. I have no illusions that this is life and everyone is going through something - of course we all are! But those of us ill and mostly housebound probably see a lot of others around us that can still actively parent their kids. I sure do. I don't have anyone in my neighbourhood or circle of friends that I see regularly that are dealing with what our family is. We see moms and dads that leave the house with their kids. A lot! That volunteer at school. That take their kids out to do sports and piano lessons. Parents who regularly socialize with other families and have all their kids hang out together. Parents who take family vacations and go to the mall with their kids. Parents who can afford to get a babysitter once in awhile so they can go out and enjoy themselves. And when they do go out, not feel so sick that they have to fight through it to enjoy themselves.
It's not that I am not crazy happy to be here. I'm so grateful to still be on this earth and to be able to be here for my kids in the capacity that I am. I see them every day. I hug them and kiss them. I talk to them. I've even been taking them to swimming lessons. This is huge, massive, fantastic. I am in love with it.
But sometimes, there is that natural overwhelm that slaps me in the face as I am constantly reminded what I can't do for them - that all their friends' parents seem to be doing. My kids weren't allowed to have playdates at our house for several years because I didn't have the energy to supervise and I couldn't handle the noise and chaos. They lost friendships because of it. Now they are allowed one once a month or so. This is hard on them for the lack and hard on me for the effort. And I'm too strict when they have playdates because I still can't handle noise and chaos! We don't do sleepovers for the same reasons. And I'm grumpy, a lot. I wish I wasn't, but I'm tired and in pain and have trouble standing up a fair bit of the time still (lightheadedness/dizzy). Then there are the meds that bring on anxiety and rage. (Fun!) I'm also not at work so we just don't have the cash to do the 'cool' birthday parties or buy them the latest clothes or toys. Not that I was ever a huge believer in that sort of stuff - but sometimes it would be nice for them. I never volunteer at school because I soooo can't.
My kids hear 'No' all the time. You thought a 2 year old's 'No's' were over the top? Try me! 'Mom, can you help me with my homework?" "Mom, can you do this craft with me?" "Mom, can you make me a snack?" "Mom, can you read this book with me?" "Mom, can you play this game with me?". It saddens and embarrasses me to an extent that most of the time they don't even ask me these questions anymore. Because I almost always say No.
So that can get me down. Can you imagine reading those statements before becoming a parent and thinking Oh yes, sign me up! Can't wait to be such a horrible parent to these poor kids! Oh the therapy they will need when they grow up! Dysfunction - bring it on!
So I consciously pull myself out of these thoughts once again. I'm here. I exist in their lives. I can listen to them on a daily basis - maybe on my terms, but I can. On the rare occasions I can pull myself together to play a game with them or read to them, then I do. I embrace those times and go for it and it's amazing. With all the knowledge I have gained as I heal, I am teaching them how to take good care of their bodies. To hear their bodies. I'm teaching them that it's not money or popularity or stuff that matters. We don't need any of that. It can be fun sometimes, sure. The people around us can got caught up in it and make us think we need it too. But it's not what true happiness is built on. These lessons come up over and over again.
I'm blessed to have these fabulous kids in my life. They are a ginormous part of what keeps me going. Like the woman in the article says - faith, family. These are the biggies for me too. I just hope the good that I'm teaching these dear children outweighs the negativity they face on a daily basis. I really do.
Showing posts with label guilt. Show all posts
Showing posts with label guilt. Show all posts
Monday, November 11, 2013
Tuesday, September 17, 2013
Happiness Habits
I came across this article today on the habits of supremely happy people. Friends and acquaintances have asked me on a number of occasions how I stay so positive in the face of a nasty illness like chronic lyme. I am honest and tell them I am truly not so positive every minute of every day and that there are days where I cry and cry. Days where I am in a rage. Moments where I am fine and then the next I am in a rage. It's lyme, right? Extremely unpredictable emotionally as well as physically. Yay! ;)
Nevertheless, since day one from diagnosis... well, okay... maybe month two or three or five after a whole lot of major freaking out :) ... I decided that literally the only way for me to survive this experience was to be as positive as I could. I was scared to lose my life, but the more immediate fear was to first lose my mind. So I promised myself to constantly look for the good. This was extremely, crazy, psycho-difficult at first. No kidding, right?! Especially considering that the first 18 months or so of treatment I spent primarily in bed, in pain (from quite uncomfortable to agonizing) and exhaustion. Barely sleeping from the lyme symptoms and the herxing. And herxing non-stop. (Detox schmetox - why wouldn't it work!?) Plus scared of the symptoms. Scared for my life. Scared for my family. And so on...
People would ask me how I was doing during that time and I would always answer 'Oh, a little tiny bit better - it's coming along'. And I could not tell if it was. I had no idea if it was. It terrified me that it might not be. But that's what I answered. Because I had to. Something in me had to.
I clearly remember being frightened to fall asleep each night, yet at the same time desperate for a break from the exhaustion and agony. I would keep the phone beside me and make my husband promise, yes promise, to check on me every 20 minutes in case I died. And I was well aware that that was sort of a stupid plan - i.e. why check to see if someone is dead? If they are dead, they are dead! But I needed the reassurance that maybe he would somehow save me in time and I could stay alive. The phone would be right beside me to call 911. I was really that scared. For many months. Ugh.
The other part of night time that frightened me was to have myself actually fall asleep, but then wake up in an even worse state of agony and have no choice but to call 911. I got to the point where I would rather stay awake and watch the progression of worsening symptoms and then decide to go to the hospital versus falling asleep and waking up into an emergency situation. Apparently I'm not big on surprises. ;)
Ah the fun of it all!
But through all of that, I kept holding on to the positives. The sunshine in my window. My dogs furry bodies cuddled up next to me. The hot water bottle. My cuddly socks. The fact that my sweet husband would actually promise me over and over again to check on me. And would listen to me freaking out repeatedly. What about the toll on him? What about the toll on the kids? What about the toll on all my family and friends? What a mess. As anyone who has or is going through this or similar knows all too well.
Anyhow, I can't say that things are easy-peasy now because I am still struggling on a daily basis. We, as a family, are hence still struggling on a daily basis. And there are still too many times where I am scared. But way way less than before. For the healing that has occurred, I am so deeply and incredibly grateful. Of course I also continue to regularly lose my sh@t due to fear, depression, guilt, anger... all those dark emotions. I like to try to honour their course - I am human after all! But then I pull myself out again - bring on the gratitude. Settle back into faith that this all makes sense and is okay somehow.
Do I think I can say I am a completely 100% happy person? No, not at all. I wish I could. I wish I could get to that point of faith and trust. But there is still too much fear. I know there are sayings like 'The only thing to fear is fear itself' but I don't buy it. (I want to buy it! Puhleeeeassse!) I fear pain. I have been in such pain that I wished I was dead even though I didn't want to be dead. I have not wanted to fall asleep at night because I don't want to wake up and have to face another day of this hellish existence. Nevertheless... I'm still pretty happy all things considered. Traumatized, yes. Scared of the future? Sometimes. Sometimes a lot. But I'm going to keep going - moment to moment, doing the best I can, enjoying as much as I can. Because this is my life!
So... back to the article. Here are the items it lists as keys to happiness:
The strongest ones for me are #s: 1, 3, 4, 5, 6, 9, 12, 13, 16, 18, and 19 (ha!!!!!).
Of course, a lot of these are modified for me due to the lyme - for example, exercise may mean stretching my body one day, a short, slow, painful walk the next. But exercise is on the table - I value it and I try. Sometimes I have a nice walk where I sort of can pretend I'm a regular person too. WOW.
In-person connections can be difficult to uphold when you can't leave your bed. But I've always kept my connections as best as I can. Emails, phone calls, friends sitting in bed to visit me. Don't get me wrong - when I was at my sickest I was extremely lonely because there gets to be very little to say and people maybe don't want to be around when someone is that sick. But I still held on as best as I was able. And so, thank goodness, did my family and some of my friends. I also can't listen to music due to noise sensitivity, etc, etc... but for the most part - I see me in this list.
Cool.
Nevertheless, since day one from diagnosis... well, okay... maybe month two or three or five after a whole lot of major freaking out :) ... I decided that literally the only way for me to survive this experience was to be as positive as I could. I was scared to lose my life, but the more immediate fear was to first lose my mind. So I promised myself to constantly look for the good. This was extremely, crazy, psycho-difficult at first. No kidding, right?! Especially considering that the first 18 months or so of treatment I spent primarily in bed, in pain (from quite uncomfortable to agonizing) and exhaustion. Barely sleeping from the lyme symptoms and the herxing. And herxing non-stop. (Detox schmetox - why wouldn't it work!?) Plus scared of the symptoms. Scared for my life. Scared for my family. And so on...
People would ask me how I was doing during that time and I would always answer 'Oh, a little tiny bit better - it's coming along'. And I could not tell if it was. I had no idea if it was. It terrified me that it might not be. But that's what I answered. Because I had to. Something in me had to.
I clearly remember being frightened to fall asleep each night, yet at the same time desperate for a break from the exhaustion and agony. I would keep the phone beside me and make my husband promise, yes promise, to check on me every 20 minutes in case I died. And I was well aware that that was sort of a stupid plan - i.e. why check to see if someone is dead? If they are dead, they are dead! But I needed the reassurance that maybe he would somehow save me in time and I could stay alive. The phone would be right beside me to call 911. I was really that scared. For many months. Ugh.
The other part of night time that frightened me was to have myself actually fall asleep, but then wake up in an even worse state of agony and have no choice but to call 911. I got to the point where I would rather stay awake and watch the progression of worsening symptoms and then decide to go to the hospital versus falling asleep and waking up into an emergency situation. Apparently I'm not big on surprises. ;)
Ah the fun of it all!
But through all of that, I kept holding on to the positives. The sunshine in my window. My dogs furry bodies cuddled up next to me. The hot water bottle. My cuddly socks. The fact that my sweet husband would actually promise me over and over again to check on me. And would listen to me freaking out repeatedly. What about the toll on him? What about the toll on the kids? What about the toll on all my family and friends? What a mess. As anyone who has or is going through this or similar knows all too well.
Anyhow, I can't say that things are easy-peasy now because I am still struggling on a daily basis. We, as a family, are hence still struggling on a daily basis. And there are still too many times where I am scared. But way way less than before. For the healing that has occurred, I am so deeply and incredibly grateful. Of course I also continue to regularly lose my sh@t due to fear, depression, guilt, anger... all those dark emotions. I like to try to honour their course - I am human after all! But then I pull myself out again - bring on the gratitude. Settle back into faith that this all makes sense and is okay somehow.
Do I think I can say I am a completely 100% happy person? No, not at all. I wish I could. I wish I could get to that point of faith and trust. But there is still too much fear. I know there are sayings like 'The only thing to fear is fear itself' but I don't buy it. (I want to buy it! Puhleeeeassse!) I fear pain. I have been in such pain that I wished I was dead even though I didn't want to be dead. I have not wanted to fall asleep at night because I don't want to wake up and have to face another day of this hellish existence. Nevertheless... I'm still pretty happy all things considered. Traumatized, yes. Scared of the future? Sometimes. Sometimes a lot. But I'm going to keep going - moment to moment, doing the best I can, enjoying as much as I can. Because this is my life!
So... back to the article. Here are the items it lists as keys to happiness:
- Surround yourself with happy people
- Smile when you mean it
- Cultivate resilience: "Fall seven times, stand up eight" (Love this!)
- Try to be happy
- Be mindful of the good
- appreciate simple pleasures
- devote some of your time to giving
- let yourself lose track of time
- Nix the small talk for deeper conversation
- Spend money on other people
- Make a point to listen
- Uphold in-person connections
- Look on the bright side
- Listen to uplifting music
- Unplug from all the technology
- Get spiritual
- Make exercise a priority
- Go outside
- Rest
- Laugh
- Walk the walk - i.e. hold your posture in a more positive way than depressed way
The strongest ones for me are #s: 1, 3, 4, 5, 6, 9, 12, 13, 16, 18, and 19 (ha!!!!!).
Of course, a lot of these are modified for me due to the lyme - for example, exercise may mean stretching my body one day, a short, slow, painful walk the next. But exercise is on the table - I value it and I try. Sometimes I have a nice walk where I sort of can pretend I'm a regular person too. WOW.
In-person connections can be difficult to uphold when you can't leave your bed. But I've always kept my connections as best as I can. Emails, phone calls, friends sitting in bed to visit me. Don't get me wrong - when I was at my sickest I was extremely lonely because there gets to be very little to say and people maybe don't want to be around when someone is that sick. But I still held on as best as I was able. And so, thank goodness, did my family and some of my friends. I also can't listen to music due to noise sensitivity, etc, etc... but for the most part - I see me in this list.
Cool.
Wednesday, May 29, 2013
Taking some recovery days
Here it is Wednesday and I still can't seem to recover from having out of town guests last weekend. My body is wanting rest. A tonne of it. I'm grateful that this week is a quiet week and I can give in to a lot of resting. But my poor mind feels like it is going crazy with all this exhaustion. I'm used to a fair bit of fatigue of course, (and I'm sure that is putting it mildly as I tend to minimize it all in my head as a coping strategy) but I guess I've also gotten used to having a bit of routine whereby I'm not in bed quite this much or fighting my body to be out of bed quite this much.
All an amazing indication of the healing that has gone on these past two years. :)
The solution of course is well known to me at this point in my healing journey. I need to listen to my body and give it what it needs as best I can. And listen to my emotions too. Honour my frustration and honour the grief. Honour the anger. I can, and am, doing all of this. Letting it flow.
Yet I still feel like I am going crazy!!! So this too, I honour as best I can.
So, is it worth it to have company stay? I honestly think, at this point, that I'll need to limit it in the future. I did a lot of prep before our guests arrived, I rested a lot while they were here. I stayed up too late in the evenings chatting though because it was fun. And I probably cooked and cleaned up a little bit too much while they were here. I need to learn to ask for more help. Next time I think it might be wisest to limit an overnight visit to one night too.
Lyme is really hard. I still want to be able to have guests and visits but I need to balance this with honouring my limits. And not feeling guilty about it.
All an amazing indication of the healing that has gone on these past two years. :)
The solution of course is well known to me at this point in my healing journey. I need to listen to my body and give it what it needs as best I can. And listen to my emotions too. Honour my frustration and honour the grief. Honour the anger. I can, and am, doing all of this. Letting it flow.
Yet I still feel like I am going crazy!!! So this too, I honour as best I can.
So, is it worth it to have company stay? I honestly think, at this point, that I'll need to limit it in the future. I did a lot of prep before our guests arrived, I rested a lot while they were here. I stayed up too late in the evenings chatting though because it was fun. And I probably cooked and cleaned up a little bit too much while they were here. I need to learn to ask for more help. Next time I think it might be wisest to limit an overnight visit to one night too.
Lyme is really hard. I still want to be able to have guests and visits but I need to balance this with honouring my limits. And not feeling guilty about it.
Saturday, May 25, 2013
Out of town guests when you're sick
Hubbie and I slept in a few extra minutes this weekend morn, but there's not much sleeping in to be had when there are rounds of meds to be taken. And when your best energy is first thing in the morning. I wanted to get up and properly nourish myself and then make both breakfast and dinner so my guests would be properly taken care of, for today.
Well, more or less.
What do you do when you're chronically ill and there are guests to be entertained and cared for? I default to making sure they are fed, and then chat as much as I can, while resting in between. This works out okay... I hope. I'm okay. I'm too tired but I cope. I am so grateful to have people who love us take the time out of their schedules to travel and hang out with us. I end up feeling guilty about being a poor hostess though. Who goes back to bed right after their guests have risen for the day and been fed breakfast? It feels weird.
I'm working on acceptance and losing the guilt. It's far from how I would ideally entertain, but it's pretty darn great for our current circumstances. Which means it is perfect for today. Not so different for someone who isn't ill and is hosting. You do your best and let love take care of the rest.
Well, more or less.
What do you do when you're chronically ill and there are guests to be entertained and cared for? I default to making sure they are fed, and then chat as much as I can, while resting in between. This works out okay... I hope. I'm okay. I'm too tired but I cope. I am so grateful to have people who love us take the time out of their schedules to travel and hang out with us. I end up feeling guilty about being a poor hostess though. Who goes back to bed right after their guests have risen for the day and been fed breakfast? It feels weird.
I'm working on acceptance and losing the guilt. It's far from how I would ideally entertain, but it's pretty darn great for our current circumstances. Which means it is perfect for today. Not so different for someone who isn't ill and is hosting. You do your best and let love take care of the rest.
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