What it is like

 

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.

 

 

Ebb and flow of parenting with chronic illness

One thing that eludes me is consistency. Some of that is A.D.D., some of that is just life.  Chronic illness doesn’t really allow for consistency. It is super annoying.  It bleeds over into parenting. When my illnesses are flaring or acting up, I tend to slack off on parenting. I know I do this.I hate it.  I dislike how much TV she watches while I lay in bed. It takes energy I just do not have, to keep on top of her.  I want to always be that mom who is fully involved and happily multi tasking making dinner while the kid is doing homework. It is just not realistic for this to be happening daily though.

This morning  Actually it started the night before, we did homework for hours. Why hours? Because I was resting. She was supposed to be sitting at the table doing her homework. I could hear when she got off task. I made sure to point it out to her. When she was crying for like the fourth time I told her to pack it up. We would finish it in the morning. She is a horribly early morning child  anyway so why not. This lead her getting up an hour earlier than normal,because she was worried about not having enough time.  Between slurping coffee and getting really frustrated she is not focusing. The guilt starts. The guilt that I should have been more on top of this. I should have. I should have. I should have.  This is what goes through my head. I know on one hand, that I could have done things differently. Then again, she is nine. She is old enough to be responsible for her homework.

It’s not like I don’t know it’s coming. It’s not like I don’t know its due. It is more like, It just gets set aside in the hurry of every day. We set it aside because this came up or that came up. We set it aside because I am not feeling well,  we will do it tomorrow. I will feel better tomorrow because I rested today and I am going to take it easy tomorrow. That by the way never actually happens.  Then suddenly it is due tomorrow.

We get her homework packet Thursday after school. We pour over it like it’s the newest gossip magazine. Look how many pages of math! Oh, look you get to do this! I have an idea for that! We really do plan on tackling it. Thursday we are good about filling in her reading log, including the summary of what she read. We mark down what flashcards she did in Math. Friday, we normally have a family treat. However on the way there I normally make her read her book. There is a fifty-fifty chance it will get written down when we get home.   Saturday, sometime after I arise from the abyss of sleep, around eight am I look at her homework packet. We might even tackle some of it.  Then the outside is calling because it is fall in Florida. It is splendid weather outside. Not cold, not hot, windy but not windy to make it miserable.  In other-words, paradise. Sunday morning is out because church. The next thing I know its Monday. When I pick her up it’s all gusto. We are going to get it done. She reads. She does math. I am knee-deep in making dinner.  “Yeah I don’t care what you do. OUT of the Kitchen!” We have tomorrow. We will knock it out tomorrow. You get the picture.

Sometimes at the end of the day, I think “yup, nailed it today.” I got work done. I got the kid fed,to school-fed and in bed. I took time for me. Go Me! Then there are other days that at the end of the day. I think : ” Well breathing was really hard today.”

I think sometimes us chronic illness sufferers give the wrong impression about flares. Sometimes, it really is a flare and we never even saw it coming. We went to bed. We woke up having a new sympathy with road-kill. Most of the time though, it is not like that. I have weeks where I really feel on top of it. I have medicated at all the right times. I haven’t pushed the limits too far. I have eaten healthy and slept decent and taken personal time. Then it slowly starts off. By slowly I mean like from one day to the next. It just slowly one thing after another stops working. The medications are not as effective. I have more muscle aches than joint aches but I am still treating for the joint aches. Maybe what I did one week didn’t push the limits, so I do it again the following week. Uh oh. Limits reached and exceeded. What? I just did that!  I ran later than expected grocery shopping or cleaning so I had less me time in the car waiting to pick her up. It just slowly builds. Those kinds of flares are easier to recover from. It is like a light goes on and I am able to fix things. I start medicating  right. I give a little extra self-care. The times that it just WHAM! BAM! No thank you Ma’am. Those times we dread because so much of the time, we have to wait it out.  I can try to medicate. I can try to listen to my body and see if there is some craving it has. Most of the time, it is waiting though.

How do you parent when you feel like that? How do you parent when it’s not consistent?

You learn to go with the ebb and flow of your illness’. You learn to ebb and flow parenting. You learn to take advantage of when you do feel good.

I am still working on it.

The real cost of being sick

 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

• How long they’ve had their condition.
• What their specific condition is.
• How it affects them (professionally, socially, emotionally)
• What things they have to purchase in relation to their condition.
• What other financial disadvantages they face.
• Roughly how much they spend per month in relation to their condition.
• How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

 

Don’t be so hard

It occurred to me today that I have been unreasonably hard on myself. I have been wondering why things I used to be able to do are such a struggle lately. It was only in discussion over some of this with a friend that I realized the difference was medication. I am not on prednisone, soma and Lortab. That I have taken steps that means I can do less but will live longer, and healthier.

When I went off the medications it was not by choice. I was sure I was going to be back right on them as soon as I found a doctor that would listen. Between the weight gain and how sedentary my life had become, I knew I needed to make changes. I just didn’t want to think about it too closely.I dealt with it slowly and piece by piece.

Sometimes just realizing that you are being unreasonably hard on yourself, that allows you to relax a little. I am going to try and focus more on what I have done each day than what I have not done. I am going to try and remember that being off those medications is a good thing and that it just makes self care even more important.

I have realized that I have depended on certain activities to relieve stress. The problem is they are not relieving stress. It took me a while to notice this. It is time to switch up some of my self care things.  Summer is coming. Well really in Florida Summer never leaves but the kid is out of school in a week.  There is going to be more variety. More embracing what and who we are. There is just going to be more.

I know I have said this in the past. I have done it in the past. Each time I am a step closer to where I want to be. I just have to remember that and not get frustrated that it feels like I am back where I started. I am not. I know that I am not when I really stop and look back.  Its a process. Sometimes its the process that is frustrating. Sometimes just acknowledging that makes it a difference. Gives us a fresh perspective and renewed motivation.

Tomorrow I turn a year older. Here is to understanding the process and embracing it all, the good  and the bad!

The quiet grief

It is so subtle.

It is just a little niggle in the back of your heart.

People talk about a ticking biological clock but, who thinks it is still ticking after you have had a baby? It didn’t even occur to me that is what I was feeling.

After all the years of infertility, after the miscarriages you would think I would recognize it.

People talk about aching ovaries, but they don’t tell you it is your heart that aches.

My biological clock is screaming tick tick tick tick. It has me thinking about what a second child would look like. Would this baby be such a complete blend of both my husband and I as our daughter is? Would this baby have blue eyes I could get lost in like my husband and daughter do? What kind of bond would my daughter have with her newest sibling?

My brain tells me that it is not responsible to get pregnant any time soon. Financially or even medically,probably both,  it would be a disaster.

I have said I am done having kids for awhile. I mean it. I know in my brain that we are done.

Then a friend is pregnant, or someone has a baby.

I thought I had worked through this and was on my way to I don’t know….. worrying or grieving about something else. When all of a sudden my biological clock says HELLO, I want a baby!  It just adds a little melancholy to otherwise sweet moments snuggling others babies.

It is only made worse when people ask when are you having another one. When someone complains about how chaotic it is having more than one kid. When someone asks how many kids I wanted. Just a little nudge, just a small twist. Its like a barb that is lodged in your heart and words can just nudge it just a bit, make you wince.

It is not something I bring up often because I am truly and completely happy for my friends with new babies. I am completely thrilled with hearing all the details of pregnancy and breastfeeding and all the cute little newborn things. I don’t want anyone to think they can’t tell me that stuff. I was at that place once, when we were dealing with infertility. I don’t want that strain on my friendships.

It really is this quiet grief, a grief of what can not be.

It seems in my blog reading I keep clicking on others, others about rainbow babies, and infertility and new babies. Not to say I am not happy for them, Not to say I don’t get the warm fuzzy feelings that are meant to be conveyed. Its like that small smile of happiness that doesn’t quite chase the sadness from your eyes.

I debated even publishing this. I thought well I wrote it, I got it out, so maybe now it won’t be so heavy on me. Then I thought about my readers, others who struggle with multiple chronic illnesses at a young age that know they can’t or shouldn’t have more babies.  It is a personal look deep down but so much of what we deal with is super personal. So here it is.

Pacing is a must

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

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.

Prepare prepare prepare

The thing to do when you have chronic illness is pace yourself. There is something to do before that though. First you need to prepare. If you know in advance that is, if not its all about recovery.

We have a huge big group hike that we have been planning happening tomorrow. Well if it is Thursday it is happening today but, I am writing this Wednesday.So we kept activities very minimum and flexible as well. I even came home and took a nap. I really did not have much of a choice actually. I came home from a rather short activity for me and laid down. Tried to get into the computer with my tv on like I normally do. I knew  shortly after that I needed sleep. It was a good way to start preparing for tomorrow.

Tonight I will take an epsom bath and when I wake in the middle of the night, as I inevitably will, I will re-medicate without hesitation. I normally wait. I don’t like to take anything if I can get back on my own. Tonight however, sleep will be imperative. I will also stagger my melatonin and other night meds, for whatever reason they work better if I take them about an hour apart. The only thing I can think of is it is like stepping your body down from the day. I will probably take the magnesium first with half dose of melatonin. My heart meds the next hour and then the last one will be benedryl so I can breathe.  (I know there are other things to take, Benedryl was what my ENT and I settled on).

In the morning it will still be about preparing. Coffee of course will happen. A good breakfast will be vital today especially. A good bowl of quality oatmeal, some chopped almonds tossed in.  About an hour after breakfast I will drink some green juice mixed with some soy protein.  Lunch will be light. Probably Cheese and crackers and apple. A pocket full of almonds and cashews, a bottle of water and we will be off. It sounds like a lot. Especially when you think that is just to get me ready and not the kid. At eight though she pretty much takes care of herself. We go on hikes enough she knows to drink lots of water and she will probably have the same lunch as me.

The last thing I will do is take my multivitamin right before we go. Its kinda like a little pep before we go.Just one more way to give my body a little oomph.

This is what works for me. It has taken me literally years to know how to prepare and not just recover. There was a lot of trial and error. There was a lot of thinking or over thinking or under thinking going on. There were even a few I found by accident, like stacking my medications. Only stack your medications like that if they are not scripts. If they are scripts talk to your Doctor first. I can not stress enough the importance of water. When you think you are hydrated, drink some more. I would encourage only water but whatever it takes for you to be hydrated. Often we get the Mio electrolyte additive drops for flavor and a maintaining hydration. The key to finding what works for you is to journal it. Jot down notes when you can about what you did , how it worked. I kept mine in just a microsoft word file for the longest time. There are also a lot of good pain journal apps that will help as well. I still use one off and on.

The last bit of advice is remember to this will NOT stop you from hurting after a big activity. It is to reduce the impact. It is still important to pace and to recover. Do not consider this pampering yourself. This is self care and it is vital.

Also…if you have followed me for even a little bit….you know there is a hike post coming as well!

Shoving off the negativity

This last week of 2013 I have dedicated to sloughing off stuff that I have stubbornly held on to. A good portion of that stuff is negative.

One of my favorite guided meditations says let go of the things that do not help me. Let go. Sometimes I just repeat that over and over in my head. Sometimes I visualize letting go of the word negativity. Sometimes I think of specific things that have been bothering me. It is either a feeling of too much negativity, or it is something specific that I need to analyze and let go.It could be a feeling or a way I react to a situation.

I like visualizing golden light or white healing light the best though. I visualize it burning out the negativity and replacing it with warm happy thoughts. This one is normally the most effective for me. If I am really struggling I go outside earbuds in, and sit on the ground. Rest my hands on the ground.Even in the dark. Often these are just five minutes or so. It is truthfully the longest I can sit on the ground like that without hurting. Plus the longer I sit there, the harder it is to get back up.

I found meditation to be the best way for me to leave negativity behind. It helps me in so many ways. I found the more I practice the more I can take advantage of little snippets during the day.

It took me many attempts to get into meditation. It took many times of starting one and trying it out, only to be frustrated and give up. It took reading about meditation. It took analyzing exactly what I was looking for in meditation. Still even after that it took more trying out different meditations. Finding what voice , what music worked for me. It was a process.

Still sometimes the best meditations are ones I do without even trying, like when I am out taking a walk.Not focusing on anything in particular. Taking every second as it comes. Enjoying the beauty around me. Getting lost in the wonder of the Forrest.

My natural first reaction to anything is to complain. I hate that. I really do. However I have learned that if I try to squash it I feel worse. Instead I embrace it and then say okay now lets find something good in this. I have also started changing the wording I use when I am complaining. You would think that would not be a big thing but it is. It not only makes a difference to me but , also the people around me who hear it. Instead of grumpily saying ” I wanted it to be like this this and this.”  I can say ” It would be nice if it had this but, this is a different approach and maybe I will like it better.”

As it is at least twice a month minimum my meditations are on cleansing the negativity from me.  I don’t plan them out. I go with how I am feeling. When I need to clean the negativity I know. I know without a doubt.  Make it part of your bedtime routine. Whether you are asleep at the end of it or not doesn’t matter. However you would be surprised how many times you will fall asleep during it.

The world likes to shove negative things at us. Over and over and over. Shoving it off of you is therefore something you have to also do over and over.  Taking small steps each day towards the goal of wrapping positive things around you. It is not easy. It is however yet another thing that is deemed worth it.

Here are some of my favorite meditations remember, they may not work for you. They may all work for you, or only some. Find what resonates with you. If you find yourself getting frustrated with this process, try chants.

This site gave me some of the best meditation advice, When I am struggling to find the right one I go back here… :    http://www.fragrantheart.com/cms/free-audio-meditations

1.  Mind Silence-remove negative blocks –http://www.youtube.com/watch?v=Y1RdEVXWXbU

2.  All chakras- meditation balancing and tuning http://www.youtube.com/watch?v=C4GtPb3Y3vQ

3. Vital Energy: Meditation Music for Depression, Anxiety and Chakra

http://www.youtube.com/watch?v=POR-U76g7Lg

 

4. Full Chakra Healing Meditation ★ Binaural Beats

http://www.youtube.com/watch?v=9DsjaXRbrMc

 

5. Extremely Powerful Pure Clean Positive Energy – Raise Vibration – http://www.youtube.com/watch?v=5l1Oy9T7-S8

Mental health acceptance..a personal choice

Accepting you have a mental illness is hard. It is really hard. It takes different people different lengths of time.Some never get there. Its a process. Its even scarier when you have a family history of mental illness. Of multiple mental illnesses. It is always looming there. You wonder if it is actually happening or if you are just so afraid of it happening. Family says ” oh we are just a family of worriers. Nothing wrong with that.” There isn’t. Until that’s all you do.  Worry is different from anxiety.  I was even at one point told by a doctor for years.. Mother’s worry. Its what they do. It is not a concern. When worry keeps you up at night, wakes you up at night, interferes with work its a concern. It’s a big concern.

I was lucky. I had a change in insurance.  I was forced to change doctors. I am not sure if I had not changed doctors if I would have made the progress I have made. I am actually pretty sure I wouldn’t have. I would have continued burning myself at all ends and continued to destroy myself. My next doctor did medicate… that is all I did for awhile. I didn’t need help. I had this. It was just a chemical imbalance. I didn’t need counseling.

Then one day I was sweeping my daughters already clean room. I barely had any dirt to sweep into the pan. I remember that day so clearly. My eighteen month old daughter was clapping saying. Clean room. I knew something was wrong. This was not what an almost two year old should be happy about.

I don’t think I made any progress that first year. Not really. Tiny little baby steps.

I made progress. Four years or so in therapy. A lot of talking. Walls came down slowly.

Strangely enough I was not able to do some of the things until my therapist retired. I was suddenly at a loss. I didn’t want to find someone new.  I had  enough therapy. Stuff was still not completely fixed. I burned some bridges I know that. I don’t think for me it could have been done any other way. It was messy. It was quick. While it happened. It was the longest time of my life. Ugly cry does not even touch what happened. I was sure I had just destroyed my life. My daughters life. I had just destroyed my marriage. I was sure of it.

None of those things happened. I have a wonderfully supportive husband who said we will make it work. It will be okay.  My daughters life is not ruined. In fact I think it has been enriched by the experiences we went through. In ways I could never have imagined. Instead of destroying my life I had found my life. Again.

I thought about all this as I talked with a friend about mental illness.  In a lot of ways she gets it. She understands. She has supported me in some of that rough burning bridges patch. In some ways, not so much. They take things personally when its not personal. It astounds her.  They know that they take it personal. I agree with this and I disagree with it. Someone who has been through therapy may know they take it personal. However being able to tell when you are taking it personally and when you are not. THAT. That is much much much harder.

I know I am not the norm. I know I am hyper aware of a lot of my mental health issues. Much more than most people. I talk about it easily, openly. Its just how I work. It is NOT how all people with the same diagnosis as me. It is a very personal choice and it happens at different times for people to be open and honest about mental health issues.  It doesn’t mean it doesn’t blur for me. It doesn’t mean I am always making progress. It doesn’t mean I take a few steps backwards. If I hold myself to be honest then I can say I have done all of those things.  I will probably never stop doing them. I don’t know about accepting that but I am okay with that.  I know when I try to tell myself that I am past that, that is when I get into trouble. Truthful acceptance , its a work in progress.