Tag Archives: surviving

What it is like

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Social media can truly be a miracle sometimes. When asked a question you have time to think without your facial expression giving it away or making it awkward. It is a small thing but one I find very helpful. Recently I was talking with someone who had just gotten diagnosed with a chronic pain illness. It would be a matter of constantly managing it. She asked me, “What is it like? How do you do it? I just can’t imagine ever being okay with this. It is so distracting and I absolutely hate it.”  I agreed. I still feel all of that. It hasn’t gone away, more like it is just simmering.
Simmering, yeah that is a good description. Let’s go with that. It is a lot like cooking a meal that will never ever be done but you know it will be worth it.  It is a labor intensive meal like Thanksgiving or Christmas dinner. It is like you have four pots on the stove and something in the oven.
One pot is emotional/mental health. One pot is physical health. One pot is spiritual. One pot is work and in the oven is the family. Just like in cooking you have to keep adding ingredients and it can simmer on its own for a bit but it needs a stir now and then. Every so often, and often when you feel you have it the most under control, all the pots start boiling over. Sometimes some smoke even starts coming from the oven.  Normally though the boiling over happens one at a time and you can handle it and move on. You take a taste every once in a while to check on it as a means to see how it is coming along. Sometimes tasting can tell you if there is a problem. Sometimes it tastes good but really something has started to go bad you just can’t taste it yet.
Then there is the other problem. Suddenly an ingredient is no longer working. It is no longer bonding with everything in the pot to make it one solid thing. It could be that self-care has fallen off your radar. It could be that you cut back on exercise. It could be that you thought it was self-care by sleeping in on Sunday, but really you hadn’t done anything else for spiritual health so it really wasn’t self-care. It could be that you cut back on exercise–physical health–for good reason, yet it negatively affected another part of physical health, vitamin D.  Sometimes you find an ingredient you thought would work well actually doesn’t and you have to take it back out of the pot.  Sometimes while you are disposing of that ingredient another pot starts to boil over. Don’t forget you changed the dynamics of that one pot you took the ingredient out of so you will need to adjust the temperature!
Yes, but that is essentially life isn’t it? You have to add the chronic pain as well. You are right about that, we are handling that as well. Hopefully each of the pots and the oven are helping that. Chronic pain though, that is the tricky element. That is the part that makes the ingredients suddenly stop working so well. That is the part that says, “that worked for a while, but now, not so much.”
On the really good days the chronic pain is like the background noise of the dishwasher going. You hear it, you know it’s going on. You just try not to pay too much attention to it until it dings. When it dings that is when you find out that suddenly the soap you were using didn’t work or something got gummed up in the hose and the rinse cycle didn’t go off. Sometimes there is not even running water to wash the dishes by hand while all the other stuff is happening. Chronic pain does that. You find something and your brain says, “hey, thanks this is really working,” so it starts focusing on something else more pressing.
So essential pain management just becomes part of your routine. I can’t tell you when it happens, just that it does. I can tell you that I am never okay with it. Chronic pain just adds to depression and anxiety because you are constantly longing for what you cannot have. Things you used to do are no longer an option. It took quite a bit of looking around trying to figure out what I wanted to do. It took even longer for me to realize that what I want to do will always be in flux. Some days I am overwhelmed that my health issues are only going to get worse as I age  because they are degenerative. Degeneration is already an issue as you get older. It is just sped up in my case.
Some days though, I don’t care. I am enjoying the moment for all that it is. Those are the days that make all the above worth it. They balance out all the bad days where all the pots are boiling over there is smoke coming from the oven and the dishwasher just plain won’t work.
It takes a lot of self-analysis to make those good days happen. In the beginning, I fought that. Don’t look too closely. Don’t fix what isn’t broken. If it is hanging on by a thread and still working, it isn’t broken. There comes a time though that it just doesn’t work any more. Nothing about it works and self-analysis is forced on you. You have to sit down and look at it. You have to acknowledge the problem.
Slowly you realize that sometimes you could be a bit more proactive. For a time that is all it is. A thought. You don’t act on it. Then one day you do something proactive and you see it pan out that it fixed a problem you didn’t even realize was coming. I am not saying that before you know it you are doing this all the time. I am not. I know I am not. I know there is always room for improvement.
At the end of the day, that is what I tell myself. I think about the things I handled proactively and the things I didn’t respond to that I should have. Tomorrow. Tomorrow I tell myself, we will try again. We are not going to try harder because we are already trying our hardest. We will just simply try again. I can tell you that if you keep telling yourself this each night you will believe it. I can’t tell you how long that will take. It could take months. It’s harsh to think that, Months! I can’t take months! I need a fix now! So take a deep breath and remind yourself that slow and steady cooks the meal.

 

 

Sparkly happy on a cloudy day TTOT #83

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Ten Things of Thankful

Well it is Wednesday before I have even started this post.
In my defense I have been really busy. There was playing with baby goats, and working, and walking and more working. Some house cleaning, some waiting on repair man. Oh and a parent teacher conference and that was just Sunday to Wednesday.

Honestly Monday was a crap day. Outside it was grey and dreary and foggy. In my head it was black and thundering and foggy too.

It is however my first item on my list of thankful’s. Being that it is now Wednesday and I can look back. I am thankful for the bad days because I can see how far I have come. They are just days now. Not weeks. Not months. Days. Sometimes there is no plural to that word, as in day!

Let’s back track a bit though. Sunday the besties were coming over and the house was a mess. Fast thinking as I am. Lets take some carrots and whatnot down and feed the goats. Easily we can spend enough time there and then walk to church. Oh had I only known how fantastic this would be. I would have brought instant hand sanitizer. We got to the goat pasture and they were penned up inside the pasture. However when we had walked by the barn we heard people talking. Let me just go and see if they will let the goats out. Farmer Brian did one better. He let the girls come back and go into the pen. He showed them how to pick them up after you pinned one down. Goat kids are pretty darn fast. The giggling, the petting, the naming of the babies. Oh so much fun was had. Farmer Brian even had a bit of an ulterior motive. He let the girls catch the ones he wanted to inspect. OOOOOOHHH the squeals! To be helpful and have fun. Well nothing beats that.  However it was a good ten minute walk and I felt like I must have said 100 times.Don’t touch your face. Keep your hands where I can see them. AS soon as we got to church they were marched into the bathroom for a good handwashing.  Despite our best efforts. We still brought goat poop to church on the bottom of our shoes.

Of course there are pictures. I will only share a collage instead of the 35 I took in twenty minutes! (thankful ten,I was still able to enjoy the girls joy and still feel I had adequately documented it for treasured memories later)

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Thankful two is this awesome project that has brought me so so so much happiness and mood boosts and joy already.

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Compassion has been something that I have been dwelling on more and more. When Lizzi tagged me in this project. I just can’t even describe how fast my brain said. THIS! Compassion for others and what they are going through.Compassion for myself. Giving myself just as much compassion as I would another. Just stopping and instead of instantly judging and being sassy and sarcastic to look at (fill in blank) with love and kindness. (Thankful nine is for perfect timing, a lesson I am still learning)

Thankful Three is a fantastic Parent teacher conference. I didn’t feel pressured to get my daughters learning disabilities diagnosed or to have her medicated.(thankful eight)  There was a free flow of communication and I really felt empowered leaving that conference.

Thankful four is a working dryer. Oh my gosh how much this makes me happy is ridiculous.

 This brings us to Thursday.

Oh look I forgot to fill this in,  but am too lazy to go back through and change the post.  Thursday I got to see two hawks rather close. They are so regal and gorgeous. They have a quiet look of arrogance that only a bird-of-prey can have.

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(Thankful Seven)

Friday…

The day I decided not to function to loose myself in the vampire diaries and go to my reading spot extra early.

I had clawed my way out of the dark stormy turmoil of Mondays brain and the weather seemed to mock Me. Here I was happy and content. It was grey overcast and foggy. I could sit in my parking spot look at the three trees feel the cool breeze and the baking feeling of the sun. As I sit crossed legged in my car with the windows down because fuck you hips and knees and ankles. Until it brings tears to my eyes to do it -I will sit how ever I want not how arthritis tells me to sit, even if I have to hand maneuver my limbs into place. I could appreciate the beauty. I could say, yes I know I am teetering on that edge. Several years earlier I would not have even realized I had wandered off the path let alone was lost. (thankful six)It doesn’t make the depression feel any less imposing. The problem with depression is it always wears you down…I know I will always have a day where I just can’t function. I don’t want to function so I have nothing to fight it with. I often know it is coming and fight to get it to a day where just maybe my world won’t fall apart if I don’t participate for a day. I can do all the deep breathing and meditation I want it just makes me sleepy but yet I won’t sleep. In the days before that no functioning day I feel myself grasping desperately at my self help tools. Sometimes I even feel them slip between my fingers despite my tight grip.they ooze through my fingers incredibly slick and slimey and smooth all at the same time.  That day of not functioning I read a lot of blogs. I read books I watch mindless TV. My thoughts don’t often bring me to tears. I have found I have to watch super sappy TV shows to cry to.There fore I am not crying for myself but for the TV show. Yes I am crying for those TV characters not myself. Perhaps if I could here and there cry I could avoid a no function day. That however did not happen so as odd as it may sound. I am thankful my nonfuctioning day came on a day I was able to be nonfunctioning. That is thankful five.

So now that I am only at five. Time to go through my week again,thus numbers that seem out of order-but are not.

The idea of pain relief

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Its been… um.. let me think… Seven years? I think. It all runs together. I no longer remember not being chronically sick or dealing with Chronic pain.

Once upon a time I was taking prescription level strength pain medications. Now I get over the counter pain relief medications.

Now I laugh when I see them call them pain relief.

Oh honey aren’t you cute. Its more of a pain dampener. Its like after the mind numbing silence someone turns on static and you think well this is nice. But then it fades and the static gets quieter and we are back. Sometimes it doesn’t even do that.

I know I have an amazing ability to push it aside most of the time. For me, most of the time it is mind over matter. Meditation has gone a long long long way to help me here. If I am in motion I am less likely to notice it. It is so much easier for me to stay in motion once I start. To just go from one thing to the next.If I let myself rest , I feel it. I don’t want to start again. This is part of the reason mornings are so difficult. Its that initial get in motion activity that is so hard to do.

I have too many sensory issues to use much in the way of creams or gels during the day. As hard as it is to believe the sensation that the cream or gel creates is more distracting to me than the actual pain.  Same with pain patches and what not. Sure I could go through the hoops and motions and get back on Lortab or something similar. The question remains though, at what cost? They were making my health deteriorate faster and with a family history of drug dependence and abuse, I am more comfortable not being on them.

In the end this means I spend a lot of time at the end of the day getting out of pain. I take Tumeric and ginger during the day for the pain and it does help. At night I often flop between aspirin and Tylenol, ice packs, epsom salt baths and sometimes even massage.

Everyone has to do what is right for them when it comes to pain management.  For awhile , for me, it was prescription medications. For now , for me, this is how I manage. It will change again. I know it will. That is one thing this journey has taught me. Pain management is all about change because our body has this wonderful way of adapting to  pain. We become tolerant of the level of pain. We become tolerant to the type of pain relief we are using.  Had anyone told me that I would tolerate a pain level of five as my normal pain level on any given day when I first started. I would have laughed until I cried.  Had they told anyone that when I rate my pain a three I consider it a really really good day. ……  The pain can only be pushed aside so much before it demands to be felt. I probably would have told them to keep the drugs coming, I don’t want to feel that.

The precarious state of my sanity, aka week five summer break

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One month down, I am over it. Already. I just want to sleep. I am over the running here and there. I am over the heat. So so so over the heat. I enjoy spending time with my daughter. Really I do. I also enjoy just having Mommy time. Summertime does not equal enough Mommy time. I am again finding myself in need of remembering to keep it balanced. She does not have to be entertained every second.

I have dealt with more flares than I expected. We had more roadblocks than I expected. I always feel like I did something to cause the flare. I let my guard down somehow. I spend so much time reviewing what I have and have not been doing to keep myself at the same level. Have I been resting enough? What about my diet? Have I been active enough? On one hand I know its more of a balance thing and its not possible to keep it in balance always.  Flares are gonna happen no matter what.  I also know I have a tendency to push when I know I am starting a flare. It works for me sometimes, when the kid is in school. It is not working for me with her here. I even added back in almost nightly baths in Epsom salt with menthol and lavender.

I am trying to remember I need to be patient with myself as much as I do with the kid. I knew I would flare. I guess I just forgot how badly I could flare. If that makes any sense at all.So here is what we did accomplish:

Sunday June 29th

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A very mentally stimulating sermon on Sunday. We are lucky to have the talented Barbara G Walker in our congregation. I love when I am intellectually stimulated to learn more on the subject! All in all a very relaxing and enjoyable day.

Monday June 30th

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Monday we walked to my cleaning job. Well I walked she rode her bike. She is getting really good at it. She lost TV and computer privileges so she had to read the whole hour and half of my cleaning. As you can see it was tough.  Neeka loves it though.

We also found this chair for the kid. No we did not buy it. It was some ridiculous price and space is at a premium here. We did however take a picture. It lasts longer that way.

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Spritzers were my thing when I was pregnant with her. She thinks she has a soda.  Little bit tricky mom right there.

Tuesday July 1st

We spent the morning doing Math and reading and we skipped writing in favor of sewing her purse. A light lunch and we were off to a library class.  We car pooled with Princess P and family as the one we went to is ….a bit creepy. There is a large homeless population that congregates around the library. We used to go to this one a lot. It is kinda far away though and there are several nicer ones closer. The wonderful world of invertebrates, so interesting! Starfish are now called Sea stars because they are not really fish. Whatever, Patrick will always be a starfish to me.  There was even a hermit crab……race.  The marine biologist was great and stressed the importance of conservation. He gathers all his specimens from the sea and returns them after the class.  So even he didn’t know how the races would go.

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Princess P was more interested in exploring so I took her out to read and explore. It was a real hardship to spend some quality quiet time with her, let me tell you. The lap sitting, the little hands, the kisses, and yes even the sassy.

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Wednesday July 2nd

The same marine biologist had a class at a different library. He said it would be the same content but that each class is customized to what the kids were interested in. The kid was a bit more willing to touch things at this class , there were a few new preserved animals and live animals. This one we also heard a story about tides and there was a discussion about tides, how they work, how far apart they are, why they are good.

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Another hermit crab race with new hermit crabs. This time they raced across the US….however the oceans were a big draw! lol.

Thursday July 3rd

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Math tutor lesson .. Daddy sat in on this one for the beginning while Mommy snuck out for breakfast with a friend. We did our hour of reading , an a writing prompt. Then we just took the rest of the day off. The  storm passing through is really messing with me. I know I am on the outskirts of this flare and I really want to rest but I also suspect the amount I have been resting is also messing with my sleep at night as I have not slept well the past two nights.  This is a chronic illness rock and a hard place.

Friday July 4th

This year we were really popular and got three invitations to fourth BBQ’s. We were going to go to Princess P’s house however without a car, transportation is an issue. Instead we went to a friend’s house who is much closer.Much more exciting though was that we found our new car! That will probably have it’s own blog post though because I am that excited about it. Here is a sneak peak though

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We had a great dinner…..

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We went downtown and parked the car , we then walked to get Gelatto and then down to the beach.

It was nothing short of gorgeous.

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It took three weeks or better but I finally got to the beach again! Hopefully now that we have a car we can go more often as originally planned.

Saturday July 5th

Today is all about recovering. I have not even gotten out of my pj’s. I have not had coffee. I don’t want to wake up. I have not had the tv on.  I am paying the price for not only being so active yesterday but also my diet choices yesterday. The bathroom and I have spent  a lot of quality time together. I doubt I will even get dressed today let alone get out of bed for more than a few minutes. Medication , possibly a bath and lots of water are on the menu today.  My stress level and even my conscientiousness level will go down dramatically as the kid will be off to a sleep over.

Never a normal doctors appointment

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Friday mornings are my roughest. I am so ready for the sleeping in on Saturday morning that sometimes happens. If it doesn’t happen the staying in bed a little longer happens. Most of the time.  Having a doctors appointment on a friday morning seemed like a good idea. I am not sure why. I know how rough I am. I got the kid out the door and to school on time. I headed to the doctors office right away because traffic is still horrible here. The tourist and snowbirds are slowly going back home…..slowly.

This was a review bloodwork and make sure my medications were all still okay. I was seeing the nurse practitioner because of a schedule conflict the doctor had. Because I can never just be a cut and dry case of ANYTHING…… my magnesium and potassium are still fluctuating still on the low side….and my thyroid is off…also on the low side…but the hashimotos study and the antibody study came back completely normal. This makes perfect sense to me, because I am used to this kind of thing. The Doctors were a bit perplexed. As I have a heart condition as well and am on medication for that, she is a bit hesitant to start thyroid medication. My heart condition is fairly well controlled with medication, however that does not mean we should take risks. If we do start medication it will be with an event monitor to make sure that I don’t have any SVT episodes(read my heart goes wacko, arrhythmia). For now we are doing thyroid level checks every three months and checking the antibodies every six months.

She was incredibly pleased with my progress on loosing weight and walking. Both of these will in the long run also help my thyroid along with my heart and other things. The progress is also why she was hesitant to start thyroid medications, afraid it will affect my heart and set me back walking and weight loss wise. We discussed diet and how juicing is helping. She was a little bothered that I only drink juice in the morning for breakfast and water. I am not a breakfast person. Unless breakfast is at ten or eleven am. She said she would like to see some grains introduced into my breakfast but since I was getting such packed nutrition from the juice she was not going to push it.  I have cut back my soda and coffee and that too will only continue to help. I told her there is one thing I do , do……the week before my period. I go with what I want, not necessarily what is healthy. We also discussed the once a week frozen yogurt. She said she wasn’t concerned because it was frozen yogurt first of all and the amount of fresh fruit I add was enough she felt the hot fudge and carob chips were an okay splurge. 

I was on prednisone for several years. During that time I had issues with skin scarring and keeping my skin moisturized enough. When I went off it , it slowly got better and went away. It is back. However she was not concerned that it was a new thing. It can take several years for skin to return to normal and will take intensive moisturizing treatments. Oh more fun. I am so horrible at remembering to do this, plus my OCD hates the texture of most of the lotion and creams.

While my magnesium and potassium oh and vitamin D levels are just slightly below level, we are still gonna keep an eye on those too. Its a relief to know that I am not taking too much because the levels I take are fairly high. It concerns me. However my body just doesn’t seem to like to hold on to those things.  Malabsorption is so tricky. Sometimes I absorb things great. Other times not so great. There is constant adjustments needed.

We then discussed the upcoming trip in August to Epcot and camping. She doesn’t see it being a problem for a low dose muscle relaxer for a week. It is one less thing for me to worry about. I can work on progress with distance in my walking. It will help with endurance. Camping and keeping up to an excited nine year old will be hard. This is just a little edge off at night to keep me going for four days.

After such a good doctor visit and leaving so pumped. I treated myself to Starbucks. Just a single shot espresso. I add sugar to it and it reminds me of Cuban coffee I used to get with my Dad. Its a nice warm fuzzy memory to set the rest of my day with. Not to mention the boost of energy and possibly being productive with housework today!

Must be nice to lay in bed all day

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I think this is the number one comment that drives me nuts.It must be nice to lay in bed all day…to stay in bed…..and things to that effect. If you are just lazying about and can get up and down whenever you want without the slightest hindrance…..maybe. If you have no problem being upright when you need to move because you are getting sore from laying in the same position…..maybe.If that is all you are planning on doing and you are pushing things aside because you WANT to …..maybe.

I really struggle with the whole resting part of chronic illness. I know I need to. I know my flares would be less. I just have never been very good at doing nothing. I struggled for awhile trying to balance not working , saving energy to parent after school and having a life. If I stay home and rest, it is really hard to get up and moving after getting the kid because I expelled more energy than I realized trying to rest. I am home so I should be doing dishes, or laundry, or getting the kid’s room organized again. Maybe I could reorganize the pantry. I could even sit in a chair for most of it. For the record that is not resting.  I can’t sleep during the day if I want to be able to sleep at night, so a nap is out of the question.

When I do force myself to take a rest day and stay in bed. It helps. Imagine that. It may take me eighteen hours or so of resting to be able to function again but I can function again! The trick is not to go crazy and clean the house and do to much and exhaust myself all over again. This is where pacing comes in , another area that I am not so good at.

It is a constant battle though to keep myself in bed because I know thats what my body needs. The guilt starts to eat at you that the house is falling apart. That you can’t keep up the house because your body requires so much rest. If I did clean the house and push myself then I often have nothing left to do anything with my daughter after school, again the guilt.

When I say I need to stay in bed all day, it is not a luxury. It is a requirement. It is not one that I admit to and concede to often. When I do it is serious. I have probably pushed myself for too many days in a row.  I am better at forcing myself to take these rest times or days. I still have progress to be made here.  I still need to let go of the guilt. I still need to stop while I am ahead. When people say this to me I struggle to be nonchalant about it. I try to just shrug it off and not let them know how hard it is.

When was the last time you….

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Stopped to smell the roses. Wait, no I am serious.

As parents we have a unique chance to always enjoy the little things. We just have to remember what it is like to be a child, when everything is new and wonderful.

Does it really take that much out of our day to

……Stop and smile as you watch a butterfly flit around.

…….splash in a puddle or two after the rain.

…….wore something just because it made you happy.

I find that when the pain is the worst or the most annoying that if I focus in on what my daughter is involved in, the pain isn’t as bad. It may mean that I have to get down on her level. Let’s worry about getting back up when it comes time.  Sometimes with chronic pain and parenthood we are so focused on doing that we forget to just ….be. That it’s okay to slow down. Sometimes just acknowledging that I am in a lot of pain and to slow down is enough to lessen it.

One of the joys in my life right now, is that I am an auntie and a family friend to enough other kids that I have my pick of age ranges. I can immerse myself in the infant stage or just chill with some eight year olds. If I am feeling really adventurous I even have a teenager or two I could annoy. I regularly get to enjoy my friends five year old as I help out by taking her to Tae Kwon Do. I am so immersed in the life of a parent of an eight year old that I forget what five was like.  Sometimes it is not that thrilling. I completely forgot how at five my daughter was slow as molasses on doing ….well….anything. I forget how determined to do it themselves they are at one.  I forget how exciting and perplexing a bird is to a nine month old.

Its amazing to me how much even just five minutes focusing on them can help sort us out. The pain is a bit more manageable, the stress is still there its just less. Does it always work? Nope. If I am really honest with myself though, its because I have not been slowing down enough. It is because I am trying to do everything all at once. There is so much guilt associated with being a parent who is in chronic pain that we tend to push our limits, all the time. It doesn’t help us. This is something I work at remembering every day.

When was the last time you……..

Sat in the grass and examined it for bugs?

pulled a part a flower to see what is inside?

stopped to blow on a dandelion?

took delight in watching the birds fly around?

As I think about the last five years dealing with chronic pain and parenthood. There were times that it was so easy to ignore everything around me and focus on the pain. It has been a slow  journey to find myself again. The things that stand out in my mind are when I was basically hyper focusing on my child/family instead of my issues. Unplanned moments that just stick out in my mind.  Will my daughter look back and see a parent in pain or a parent involved?

I hope and strive for a parent involved.

Pacing is a must

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It is a must! As in not an option.

Sometimes pacing is:

Take the stuff out of the dryer. put the washer to the dryer .new stuff in the dryer…and lay down. Sometimes you have to lay down the entire 60 minutes that the laundry is going.

Sometimes it is setting an alarm for fifteen minutes and chipping away at the housework then setting an alarm for thirty minutes of rest.

What is not pacing is what I tend to do…..

Get up take the kid to school go clean a house, go to lunch with a friend hit the grocery store pick up the kid, come home make dinner, get the kid to do homework and take a shower and read and get in bed. At which point I collapse into bed in an exhausted pile of goo. Brain function left somewhere around dinner time. I may be ready eleven hours later to maybe contemplate getting up to take the kid to school. Maybe.

Then there are days like yesterday

I got up got the kid to school, even packed her a lunch, came home, RESTED for about an hour, then did some work on the church facebook page, got up moved laundry along, sprayed down the shower with limescale remover and a dash of bleach to the tough area, set the timer for twenty minutes, did some dishes, rinsed shower off when timer went off, RESTED for about twenty minutes or so, ATE lunch, a good balanced lunch, Did the floors, went to church meeting where even though thinking was involved it was two hours of sitting, worked on church facebook page a bit more for twenty minutes, went and got the kid from school, sat in the field while the kids played for a bit, picked up the husband, went to have frozen yogurt, went to target(where i kicked it with cartwheel) and then we went to a friends house where sitting and relaxing and talking happened, then home for dinner shower and bed. I really don’t think I was awake any more at 745. However I put my bedtime at 815 because I responded to a text then.

It was busy, It was productive but there was lots of resting times worked into it. I didn’t feel overworked or burnt for more than ten minutes at any point. I RESTED.

I would love if my days looked more like this. Productive busy but also a lot of self care worked into it.

Of course even that might have been pushing my boundaries a bit as this morning was spent mostly in bed,sleeping, however that could also easily be my med changes because I added prozac yesterday. Hard to tell which.

As a mother it is hard for me to work in self care. To schedule it into my day. It is a must , it needs to happen. Pacing is self care. It really is. I found if I scheduled it, I had less guilt about it. I was sticking to my schedule, nothing was being put off. If you have to …schedule it. Pacing is just as important as remembering to take your medications, get that bloodwork done, go to the doctors.

 If you have to, wake up earlier so that you can get up, get dressed, lay back down. get up take pills, drink coffee, lay back down. Believe me I have done this. I have been there. Days where even just standing up is exhausting.  At one point I was taking my morning medications when my husband had to go to work, at 545 am and then going back to sleep so when the kid got up at 630 I had a chance of actually being able to get up with her.

The more time we take to balance what we are doing with resting , the more productive we are.  It takes time and dedication but you can increase how long you are able to be productive. At one point twenty thirty minutes was my max before I would crash and need to rest for often hours, now I can get away with a fifteen to thirty minute rest most of the time.

Of course for those of us with multiple chronic illnesses there is only so much you can prepare for , however pacing is still just as essential, almost more so. I know I can keep my fibro pretty happy between meds, supplements, pacing and resting.  Degenerative disc tends to like to listen to barometric pressure changes more than me. However if I have been diligent with meeting my fibro needs, the degnerative disc flares are easier to handle and often less intrusive than they could be. All bets are off when IBS flares though, nothing makes that monster happy. I know how to manage it and I know when I am cheating on managing it , I will pay. It has a way of making you pace yourself though, only so much can get done between running to the bathroom.

A lot going on in there

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On the tail edges of my cymbalta withdrawl, I have been completely off of it for four days. I will be starting prozac on monday. All that to say, I have not been able to handle my normal amount of stimulation. I can’t have the tv on while I am on the laptop while also sending texts, while having at least ten tabs open on the laptop. I have been reading more. Sometimes it is my current books that I am reading,yes books as in plural..I have three going right now. Sometimes it is blogs. I have taken the time to go a bit slower. Really digest what each blog I read is saying. You know I have been really big on #Depressedbutdressed in collaboration with It’s not my workout.  For once I have been taking the time to follow embedded links. It is where I stumbled upon One Little Word (http://aliedwards.com/shop/one-little-word-2014). I have been thinking and reading other blogs that have posted their word.

What would my word be?

Sorting through words that describe me, or that I want to focus on, or that I want to be better at, I come across these.

Love

Honesty

Integrity

Courage

Thrive

Inspiring

Starting to break these down into what I could do with them on my own since I can’t pay for the workshop right now, it was interesting to me. Even a little eye opening.

Love being the first one. Without love I am nothing. If I don’t love myself I can’t love others. Love must coat and cover everything I do without smothering at the same time. There is one song that I will always always always sing out at the top of my lungs when it comes on. It is the one that when I am having a bad day, it starts to turn it around. Love is all you need by the Beatles. It is not by coincidence that the very next song on my playlist after that is Eight days a week. I may have a thing for the Beatles huh. I mean those two songs just say it all.

Honesty is the second one I keep close. I love the TV show Bones primarily for Dr. Temperance Brennan. I admire her ability to be honest,even if it is socially painful sometimes. Really we need more of that. Maybe a little less of the ego but, I have to say she has earned her ego. When I was in the midst of teenage years and untreated ADD/OCD I was really horrible at honesty. For me this word still circles around love as well. When you love someone you want to be honest with them. When you start by loving yourself, you tend to be more honest with yourself. Even when it is not pretty.Once you do that, being honest with everyone is a natural next step.

The third one may catch some of the people who know me off guard. I have been told over and over I am so courageous to deal with what I deal with everyday. I am glad I project that. It is not however how I always feel. Most of the time I feel like Piglet. Piglet doesn’t even realize that sometimes just the fact that you keep going is courage. It is something that escapes my notice a lot. Yet again I find that this word ties into the first two. Because I love myself, I can be honest with others when they say I so admire all that you do on a daily basis. I can tell them, thank you it means a lot to hear that because I rarely feel I am doing anything really major. I am again forced to stop and think about what exactly I am doing everyday. What I am doing that they admire.

Thrive has really what the last year almost two years has been about for me. Finding ways to thrive in spite of everything that is going on. Finding happiness during hard times.  I am not letting go of thrive either. It is an ongoing pursuit and goal.

So the last word I came up with is inspiring. I didn’t start my facebook page or this blog for anyone other than me. It was more of an attitude of this is for me and if it helps someone else great. It has been slowly shifting to , I want it to inspire others. I want it to show others that we are not just our illness. I want it to show others that there is no reason you can’t thrive in the life you are living right this very moment.In an odd way this started about me, became about others and is slowly becoming about me again. Becoming about me as others inspire me or ask for advice, I tend to go back inside myself and look at things. I have made progress in areas because others asked for advice and I had to really look at something. Often times it was something I knew I was sort of dealing with but not really. Others have become my inspiration to keep making progress on my own issues.

I don’t really think I could find one word that I would stick to. I will keep thinking about it and I have followed some specific blogs that are participating in one little word. I want to make sure that my ADD does not let this project fizzle out of my head and get lost in the 1,324,4545,4591,342,528 other things that my brain likes to bounce around.

#Depressedbutdressed an on going battle

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Even when the depression is at its least intrusive it is there.

It is always there.

When I am smiling.

When I am doubled over in laughter.

It is there.

No matter what I am doing, anyone with depression is doing, it is the dark cloud that is always there.

Depression is very tricky. It lets you think that you are not depressed. It reels you into feeling safe.

I am not depressed anymore so I don’t need my medications.

I am not depressed anymore so I can lower my medications.

Sometimes it even lets you stop your medication.

That was when it was the easiest for it to strike again for me.

I don’t even second guess anymore that I need an anti-depressant.

It is just a fact that I do.

I also need an anti-anxiety medication.

Not everyone with depression is the same.

Depression is rarely exactly alike in two people.

I have a friend who when hers flares she sleeps and sleeps and sleeps.

When mine is bad, I can’t sleep.

There are areas that people who have depression can relate to.

It makes you feel helpless.

It makes you feel alone.

It makes you feel broken.

Depression is not just sadness. It is so much more than that.

Just like there are different types of people, there are different types of depression.

I was so easily deceived by depression. I was diagnosed with clinical depression. It was not explained properly to me so it got a good hold on me before I realized it. Clinical depression does not just mean a chemical imbalance. So much of what I was feeling is also common in OCD, which is my primary diagnosis.  That constant feeling of impending doom, you don’t know why its there but it is. There is no reason for it to be there. Some people get a feeling of despair. For me it has always been that waiting for the other shoe to drop feeling.

This is why I absolutely loved the hashtag depressedbutdressed. It’s creation was my friend Jen’s brain child. Go check her out (http://www.itsnotmyworkout.com/) Depression has many faces and this hashtag is a way of making people realize that.

I don’t remember to use it everyday. It does not have to be something you hashtag you use everyday. Actually I think if you do it looses its effect.

We need more people showing they did the hardest thing that day. They got up , they got dressed even with depression. They may be depressed but they are dressed and that is the hardest thing for someone with depression.

********** feelings of suicide or suicidal thoughts are a very real aspect of depression. If you are having such thoughts there is hope, There is help. There is a national number that can help you get the help you need. YOU DESERVE THE HELP. Don’t think these thoughts will go away and you will be okay. Pick up the phone and call. CALL NOW! 1-800-273-8255 ************************************

”I’m