Keep a Journal

My journal is my best friend these days. I started it a couple of months ago as a method of "self therapy." More than anything, it keeps me together when I feel like things are falling apart.

Since I'm a technophile, my journal is completely digital. I use Red Notebook for its calendar, search options and word cloud. Instead of flipping through pages, looking for something I wrote I don't know when, I can type a few words in the search box and voila..there's what I was trying to find out.

My journal helps me decide what to discuss with Steve, and what to keep to myself. For example, it helps me figure out if a bout of depression is a short term thing or if has been going on for some time. Often, bipolar individuals do not know when they are experiencing a depressive episode until they are deep within it. If it seems like things have been going on for some time, I can look back and see what I've written in my journal.

My journal keeps me on a positive track. I can always tell when I'm starting to become negative about things because my word cloud shows the negative words like "can't," "don't," "overwhelmed" and "sad" in great big letters. I don't edit my journal entries to make them happier, but I'm more aware of my thinking.  Just that little visual reminder tells me that I should start focusing the things I'm grateful for, rather than the things that bring me down.

Finally, like all journals, it is a place where I can vent and scream and cry without anyone knowing about it. Sometimes, just writing about a situation is all I need to make it better. I don't have to be "perfect" or "upbeat" or even understanding. I just write what is inside of me. 

I wake up early every morning specifically to write in my journal. I prefer the mornings because venting my anger and frustration early keeps me from having a bad day. It works the same when I write about what I'm grateful for. It's kind of hard to be cranky when you've just spent a half hour expressing gratitude for the sunrise.

If you don't have a journal, I highly recommend it. It can be as little as a single sentence like the one Gretchen at The Happiness Project keeps.  Everyone needs a place where they can express their feelings with no repercussions.

Let it Go (Why My Kitchen is a Mess Right Now)

I've mentioned that Steve and I had a major change in roles before. This change is one of the hardest things for me to accept. For five years, I have had a method of keeping up with the housework that worked reasonably well. When I got up in the morning, I would neatly stack the dishes that were left on the counter over night (before we had a dishwasher) or put them in the dishwasher. If it was laundry day, I would dump a load of laundry in the washer. This was all done while my coffee was brewing.

I absolutely hate a messy kitchen. Actually, I hate any mess at all, but I've gotten over that as our family has grown. (Three boys are quite messy.) But, the kitchen is the worst. It's the first thing people see as they walk through our door. To me, it sets the tone of the house.

Since we've changed things around, Steve has complained each and every time I cleaned up the kitchen in the morning. This is now his job and he feels that by cleaning up, I am minimizing his worth in the house. I've never thought of it that way, I just wanted a clean kitchen.

This morning, our kitchen is particularly messy. I would take a picture, but I'm way too embarrassed. We spent much of yesterday lounging about and it shows. My first reaction was to start cleaning as soon as the boys were safely off to school. I had to force myself to walk away and accept that it would be done.

No one is coming to our house today. It is just Steve and I all day until we pick up the boys from daycare. If he wants to rest before cleaning up, I have to let him do so. Instead of cleaning, I came into my office/bedroom and shut the door. It is the complete reverse of shutting the door to our oldest boys bedroom because I don't want to see his mess! I'm shutting out the rest of the house.

I have to trust that it will get done when Steve feels up to it. And, I have to remember that my way is not always the only way. I'm considering creating a sign that says just that and placing it on the wall above my computer screen. Maybe that will help make it easier.

Decision Fatigue -- They Put a Name On It

This article from the New York Times finally put a name to what has become of my life. Decision fatigue is the biological effect that occurs when you spend your time making decision after decision. At some point, you finally have had enough and you either start making reckless decisions or not making any decisions at all.

I do both, but I seem to lean more toward making no decisions at all. In essence, I hide. I've been noticing the same behavior in Steve, too. We have spend so many years making big decisions -- should he have the surgery, should we move to be closer to family, should I continue my writing or should I start looking for another job -- that we are burned out.

The problem is, we haven't just stopped making big decisions, we've stopped making any decision at all. I spend a lot of time staring at my list of writing projects without starting any of them. I just can't decide what to write or how to start

When we do make decisions, we find ourselves considering the most reckless options.  For example, my poor laptop is dying a slow agonizing death. I find myself spending a lot of time talking myself out of buying another one when we simply don't have the money for it right now. And, Steve supports this, he just wants to see me happy without placing any thought into it.

This is causing us to remain stagnant in our lives. We have become slugs with no purpose. Why, because we can't decide on a purpose and we don't want to think about it. We would rather stumble around StumbleUpon (me) or lay on the sofa and watch terrible movies (Steve).

I'm not sure how to get out of the rut we are in. But, I now know what is going on and can address it. Maybe by starting very small. Today I'm going to work down my list of articles. Just start at the top and work my way down. No decisions, just work through the list.

Routine

For the past three years, I have been spouting off that "I can't have a routine. It just doesn't work for us." What I really meant is I have to have a strict routine or no routine at all. And since I live with other people, a strict routine just doesn't work.

There are days when all Hell is going to break loose. There are days when it will take Steve forty-five minutes to get dressed and asking him to help get the kids out the door seems like cruel and unusual punishment. There are days when the kids are going to cooperate and be helpful and then there are days when they are not. As a writer, there are days that I can write 10 articles in a few hours and then there are days when I can't complete a single paragraph.

So, because my days didn't fit in a nice little OCD box, I gave up on routine. Allegedly preferring to "wing it." Well, winging it creates endless days with no motivation, no purpose and really awfully behaved children (and adults).

When Steve and I were talking about how to make our lives more purposeful and happy, one of the common themes was "We need some routines and traditions."

The week before last, I had sat down and planned my work days out so I knew what to do when.  During our discussions, Steve and I looked at my work day and scheduled the chores and other things around my day.  I made a list of the chores that needed to be done. It was eye-opening to realize that Steve had no idea when I cleaned the house. We also planned in time to play with the kids and downtime for each of us.

This week was the test run and things seem to be going well. We are still in the process of tweaking everything but everyone seems much happier. The kids have a clear idea of what is going to happen during the day. I get a reasonable amount of time to work and Steve gets time to rest when he needs it most.  I can't believe how much a simple routine makes the day go better.

Focus on the Positives

Last week was one of those weeks where everything just pissed me off. Steve had another medication reaction that made him sleepy and pretty much worthless. The kids were home from daycare because we didn't have the money to send them. Steve was paid his normal short term disability pay, but then a third of it was removed from our account without our knowledge.

Did I mention the kids were home from daycare? Yeah, that meant I couldn't work until after they went to bed.

Needless to say, I was a tired, cranky, unhappy person and quite the joy to be around. Most of the time I was either screaming, crying or just plain not talking.  I'm pretty sure my family preferred the not talking.

My mood set off Steve's already foul mood -- he hates to be worthless and sleep all the time.  The kids were cranky because Mommy and Daddy were fighting. It was horrible around here.

I tell you all of this because it made us realize something. Something we should have realized a long time ago. We can wallow in our misery. Hate God because he won't heal Steve's back. Hate everyone because they have it better than us. Or, we can focus on the good in life.

We may not have a lot of money right now, but we have enough to eat and a roof over our head. Steve may not be able to wrestle with the kids, but he can read to them and play games with them. I have the ability to do the work that I love, even if its at 2 am. Our kids are healthy, happy and interested in life.

No, our life is not going the way we expected it to. But, it's going the way it is supposed to. Steve and I have always said "Things happen exactly when they are supposed to." We just seem to have forgotten that. Now we are focusing on remembering.

We are also focusing on creating routines for our lives. We need them and they allow us to go through our day with purpose. Everyone needs purpose and direction. More on that topic tomorrow. For now, have a wonderful, purposeful day.

The Kids' Reactions

The other day my 11 year old son came up to me and said "Mom, I'm mad at Steve's doctors." I asked him why he felt this way, and his response was "I don't know why they won't just fix his back and be done with it. Why does he have to wait and wait and wait?" It was then that I realized we had never explained to him that Steve was not going to get better and that the doctors had done all they could do.

He was so upset. When Steve and I got together, my son was 6 years old. Steve and he had a lot of fun goofing around in swimming pools, wrestling, and just "being boys." Over the years, the horse play has slowed down to nothing. It never occurred to me that it was missed.

Steve and I talk so much about his pain levels, doctors appointments, surgeries and medications that when we are hanging out with the kids, we try to avoid the subject. I realized that was wrong. That the older one, at least, should have some explanation for what has happened and why it is never going to go back to the way it was.

Our younger two really don't know any different. They have never had a Dad that wrestled with them. They are so used to Daddy lying on the couch, that they are slightly confused when he does play with them or take them to the park.

After that conversation with the 11 year old, I also realized that we have to be more careful about what we talk about in front of the younger two. And how we act around them. We often forget that they understand more than we think they do.

For example, when our four year old wants attention, he starts walking with a limp and complaining that his back hurts. That's also how he attempts to get out of doing chores or anything he doesn't like. He's just simply used to Daddy getting to lie down when his back hurts.

Steve and I had a long discussion about this over the weekend. We are trying to make it a more positive environment around here. (More about that tomorrow). We don't want the kids to grow up with a "sick" Daddy. We want them to just grow up with a "Daddy".  It will be a work in progress, but with some positive thinking and some intentional living, I think we can change it around.

Planning for theFuture

Yesterday I woke up with a horrible case of the flu. Now, the flu is not deadly (at least to a relatively healthy 37 year old woman), nor is it a long term illness. I feel much better today.  But, as I lay in bed under a big, heavy blanket even though it was 80 degrees outside, I thought about how we would handle things if something happened to me.

Three things occurred to me.

1. I can no longer take my health for granted.
2. We need to get start saving again.
3. We need to have a Will and Powers of Attorney written up.

We need me to be as healthy as I can be. If I would have a long term illness or injury, we would be sunk.  I should already know this, as I had a separated pelvis when I was pregnant with my last baby and spent three months in a wheelchair. But, somehow the birth of the baby has caused me to forget how awful it was.  This flu made me remember what it was like when both parents could not climb stairs, pick up children or even make dinner properly. I cannot take my health for granted anymore.

However, even perfectly healthy individuals are in car accidents, have heart attacks or sustain other life altering injuries. Steve was perfectly healthy before he tried to lift an air conditioner the wrong way. So, we should be prepared for the worst. That means having a decent savings account (although what I used to think was decent was sorely lacking) and having a Will and Powers of Attorney in place.

The money is easy to think about. I can come up with a budget and a plan for saving. The Will and Power of Attorney is a more difficult. No one ever likes to think about what would happen if you died tomorrow. But, we also have to decide who would help care for our children if I was unable to do it. As they get older, it will be easier for Steve to manage the day to day activities, but right now he would needs a ton of help. His mother lives with us, so it is not an immediate need, but we should have another person in line.

Have you thought about what would happen if you became unable to function? What plans have you put in place?

The Growing Bill Pile

Today everyone has money issues. The economy has tanked and we are all feeling the pinch. But, three surgeries in three years brings on a pile of bills that is not to be believed. Steve even has amazing insurance!  I have no idea how people who do not have any health insurance deal with the onslaught of medical bills, lost wages and creditors.

One of the major things to be aware of when you are faced with a short-term or long-term disability claim is that you will only receive a portion of your paycheck. And, in our case at least, it is a sliding scale. So, as the medical bills increase, the income decreases. This is horrifying.

You can offset the difference by purchasing private disability insurance, but many people do not do this. I know we didn't. It never occurred to us that Steve would be unable to work by the age of 40. Even after the first two surgeries, we figured he would always be able to work. He has a desk job and can work remotely. Unfortunately, we did not factor in the pain from just sitting at a computer for eight plus hours.

You should also know there is a waiting period for Social Security Disability. Currently, it is five months. Five whole months where you don't get any sort of paycheck. I can't imagine it. I will forever be grateful for Steve's disability insurance through his employer.

We are struggling right now and, I'm sorry, I don't have any words of wisdom. We are incredibly lucky that I can work from home and can make enough money to keep us afloat. I wish that I would have spent more time growing my business before Steve got hurt, but I can't go back and change that. I can only work with what is in front of me.

I will tell you to set your priorities early. For awhile, we have been living day to day, paycheck to paycheck. I don't think either of us really understood the permanency of the situation. Plus, Steve was unable to do some of the work required for me to have the time I needed to work. If we would have set our priorities, we could have staved off some of the panic we are feeling now. Now I am playing a "catch up" game and it is hard on me and my family.

If you have any suggestions on how to deal with the medical bills and scary financial situation, please comment. I have already cut our expenses to the lowest we can go. Now it is a matter of making more money. I have a positive attitude and have spent many hours in prayer. I could use all the advice I can get.

Why I Resist Counseling (and Why I'm Going)

Ever since Steve's third surgery, it was suggested that I go to counseling. I do recommend counseling for anyone in a similar situation. Heck, I recommend counseling for anyone who lives with a bipolar individual. There is a lot going on there that you should really get expert advice on.

Anyway, no matter how often it has been suggested to me, I smile and say "thanks" and then walk away. It's not that I don't think I need it, I'm just pretty sure I'm not going to agree with/like what I hear.

I know, I know, you don't go to counseling to like what you hear. But, I've been through counseling, I usually don't agree with what they say. And, I have yet to find a counselor that truly understands the reality of the situation.

Here's what I don't agree with--

You have to take a break -- Umm, yeah, so, no. I'm a freelance writer with a very active one year old child (and two very active older boys) and a partner who can't drive or do much heavy duty housework. I also have a very large yard that takes at least 3 hours a week to maintain. I am on the move from sun up to sun down. Taking a break puts me exponentially behind.  No, thank you.

Have family come in to help -- Our family has busy lives of their own and already help out whenever they can. Steve's mom lives with us. So, this is one is already working as well as it can.

Hire help -- Are you going to pay them?

You can't do it all -- Well, if I can't, who is going to?

There are a thousand and one more reasons that I avoid it, but those are the big ones.

Recently, I've been given the chance to attend counseling again and I'm going to take. For exactly the last reason that I listed above. I'm failing at doing it all. I'm constantly yelling and snipping at my family. I'm forever tired and I have no goals or priorities.

This time, I sincerely hope that I can get more out of it than past experiences. If someone could just help me find my priorities and set realistic goals, I will be happy. I need the help and I understand that. I am going to try to go into this with an open mind and hopeful heart.

Are you resisting counseling? If you are or have gone, how has it helped you? What have you taken away from it?

Becoming an Expert

I may not be an expert in anything else but I am definitely an expert on S, his meds, and his condition. I have to be. He can't always make the best decisions for himself and he needs someone to advocate for him and keep everything straight. 

I know how his  medications interact better than his doctors or the pharmacists do. i know that one of his meds metabolizes in his liver, which cuts the effectiveness of all his other meds in half. I have often said "no, you can't give him x med because he will get sick/ have a reaction/ get depressed/ become manic." Every doctor has looked at me like I was crazy the first time I said that, but I back my information up with hard data and exact dates and times that it has happened.

I also know what exercise will do to his mood. How much he can take before having to give up. What his mood is on a day to day and moment to moment basis. And I am learning how to encourage him while also making sure he doesn't over do it. (This last one I'm not so good at yet.  I have the theory down, but I'm still learning to put it in practice.)

There are some times when S is in so much pain and/or is so depressed, that he is not sure what meds he is taking. Even the ones he has been on for years. Oh, he knows the names, but ask him the dosage or even when he took the last dose and he'll give you a blank stare or an embarrassed laugh. He has loud alarms set up on his phone and I double check with him every time. I also have the exact dosages written down on my phone. 

He also tends to understate how much pain he is in (especially with friends and family) and I have to sometimes be the "bitch" and tell him to slow down. I have talked to his brother and family about how to help him, because he refuses to do it himself. I have also said "yes, he said his pain is a 3, but he understates things, I truly believe it is more of a 6 or 7".

I believe everyone who has a loved one with a disability should become an expert on that person. Ask a ton of questions. Scour the Internet. Buy a Physician's Desk Reference. Read every book ever written on their illness. Keep a journal. Your loved one will be better off for it. You don't have to be annoying about it. It doesn't have to become your whole life. But, you should be knowledgeable. The doctors, surgeons and pharmacists don't know your loved one as well as you do.  Make them accept you as a part of the treatment team. 

That being said, don't become the "parent". (Unless, of course, you are the parent, then skip this and carry on).  S still knows more about what is going on inside him than I do most days. If he is feeling good (or reasonably good), I don't go to his appointments with him. I may write a note, if I feel strongly about something, but he is perfectly capable of talking for himself. I do question him and ask to see his prescriptions before we leave the parking lot. That way, if I notice something amiss, I can run in and talk to a nurse. But, overall, he's on his own. 

I also don't shove my knowledge down his throat. I will mention certain signs or symptoms, but I don't harp on it. My research and information is for me only. On the other hand, he knows how much research I have done, so if he has a question, he will ask me. But, its only a small part of our conversation. I don't want our life to be all about his disability or pain. We have much bigger fish to fry...such as how do we keep our dare-devil one year old from climbing up on the roof...

The Drug Stigma, continued..

I posted about S's experience with the stigma against people who take narcotics on a regular basis when he went to the emergency room.

Today, we ran into it again at the pharmacy. The pharmacists refused to fill his valid prescription, written by a reputable doctor, on the grounds that he is taking too much. My question is "Since when did pharmacists become doctors or DEA agents?"

This is a common problem when on a long term narcotic prescription. Many of the people interviewed for Arthur Rosenfeld's book The Truth about Chronic Pain: Patients and Professionals on How to Face It, Understand It, Overcome It complain about their pharmacists refusing to fill narcotic prescriptions.

In S's case, he was prescribed a higher dose of his breakthrough medication because we were going on vacation. His doctor tried to estimate how much more he would need, but the estimation was off and S needed to take more than was prescribed. Before he left, his doctor told him, "come back when you run out, I will refill it."

S went back to the doctor when we returned and explained what happened. The doctor had no problem with this and wrote another prescription to make up the difference. He knows that S is in constant pain, and any additional activity is excruciating. He also knows that S does not abuse his prescription. If he is not in pain, he doesn't take them. This was the first time that he ever asked for an additional prescription. It was not a problem.

We knew the insurance company would not pay for the second prescription and that is fine. If you take any medication outside of the prescribed amount, the insurance company will not pay for the additional prescription. We told the pharmacist what had happened, she called the doctor's office to verify and filled the prescription.

Today's script was his regular monthly dose. Because we live in a rural area, the pharmacies do not typically stock this medication. We almost always call around to find out who has it in stock. Our regular pharmacy is part of a chain and the local store did not have enough. We called the next closest store in the same chain and they did have it in stock. However, the pharmacist refused to fill it --without even seeing the prescription or talking to the prescribing doctor. I ended up driving an hour to get the prescription filled at a different chain pharmacy.

Correct me if I'm wrong, but I feel it is not the pharmacists job to determine whether or not an individual needs a medication. I can see refusing to fill it if there was a drug interaction or if S was allergic to it. But, simply because the pharmacist felt he was taking too much, I don't think that's right.

It is the doctor's job to determine the medication needs of his or her patient. S's doctor understood the circumstances, knew it was not going to be an ongoing problem and wrote the script. If he felt there was something underhanded or not quite right, he would have refused to write the script.

Needless to say, the pharmacy in question has lost our business. I am willing to drive an hour for our prescriptions if it solves the problem. S has fought long and hard to get the correct pain management. He is going to live with this pain for the rest of his life. He will become tolerant to the dosage he is on and it will need to be increased. These are the facts of chronic pain and narcotic use. I refuse to work with a pharmacy that does not understand or accept these facts.

Dealing with the Bipolar Rage of a Loved One

I spent most of today composing this post in my head, then mentally erasing it as I decided that I would not post something so personal. I finally decided that if I am going to be completely honest about how bipolar disorder (and S's other disability) affects me, I have to post the hard times as well as the easy or clinical.

S deals with Type I Rapid-Cycling Bipolar Disorder. This means that, unmedicated, his moods shift rapidly from manic to depressed and back multiple times through out a day.

My stepdaughter also suffers with bipolar disorder. We are unsure of the severity of her condition, because she refuses to work with any psychiatrist or psychologist. She was diagnosed when she was placed in therapy through a court order.

One of the most disturbing parts of unmedicated bipolar disorder is the uncontrolled rage. It is for bipolar individuals to become enraged over the most seemingly insignificant things. When they are in a rage, they cannot control their actions. S and others whom I have talked to say that they feel sort of "outside" themselves. They know their actions are wrong and harmful, but they cannot stop until the rage is over.

My stepdaughter, who is 22 weeks pregnant, had one of these rages last night. She threw herself on her stomach on the floor ("exactly like a four year old," she says), punched her boyfriend repeatedly, completely destroyed her phone (arguably her most prized possession) and threatened her boyfriend with a knife. I have been through many of her rages, some of them targeted at me, it is quite frightening.

However, that is not the most disconcerting part of the episodes. What is truly unnerving is the way she can flip from complete rage to laughing and joking like nothing ever happened in the blink of an eye. This switch is why she is never admitted to a psychiatric hospital, no matter how hard we try.

By the time her grandmother got to her last night, the rage was over. My stepdaughter downplayed the entire episode, even though my mother-in-law heard most of it on the phone. She did agree to seek psychiatric help, so we drove her to the hospital, which is an hour away. (In our area all hospitals are at least an hour away.) By the time we made it to the hospital, her story had changed to "she had fallen, and needed the baby to be checked out." We confronted her, and she admitted to the real story, but did not see the need for an inpatient stay.

Because she was so calm and under control, the mental health worker did not see a need to admit her either. She denied any intention of harming anyone and there were no accessible medical records supporting her bipolar disorder. I do understand how he came to his decision.

Unfortunately, a normal person's moods and feelings do not switch that fast. Even though I understand what happened intellectually, emotionally I am still mad as hell and scared for her boyfriend, her unborn child and her.

The rages are increasing in severity, which is also a sign that her bipolar disorder is increasing in severity. I fear what she will do.

I have known one bipolar individual who had a standoff with the police, complete with guns. I know S has done some incredibly stupid things in a fit of rage. Both S and I have gotten hurt trying to subdue our daughter during one of her rages. She has destroyed property, broken down doors and kicked her four year old brother.

Right now, the only thing S and I can do is to refuse to allow her into our home and around our younger children.

This is one of the hardest decisions we have ever made.

It is hard to tell one of your children that she can no longer have contact with you. I truly hope you never have to experience this. But, we have to protect our own sanity, and we have the safety and innocence of our younger children to think about. In this instance we truly have to sacrifice one to save many. Knowing this does not keep me from crying for and worrying about her and her unborn child.

Please understand, before you judge me, this is not a unique instance. This has been going on for the five years that I have been in her life and even longer. Her mother,father and brother have been dealing with this all of her life. At some point, you have to say "STOP!" She is 18 years old, living on her own and responsible for her own life. Everyone needs a break from it. And, if she is not going to get help, she must deal with the consequences on her own. We cannot force her to do anything. Nor, can we stop this. We must now think of our other children and ourselves.

Handling the Disability Insurance Company

I wholeheartedly agree with the Disability Insurance Business Blog's recent post "Why Should You Get Disability Insurance?" Without S's employer sponsored disability insurance, we would be sunk. I was not prepared to become the household's primary breadwinner at the time that we would have lost his wages. It also ensures that his employer continues to hold a job for him, if and when he can return to work.

However, just having disability insurance is not enough. When you become disabled, or if you are simply going in to the hospital for a surgery or other illness, you must become a disability insurance expert. You should know how much of your wages the insurance will cover, for how long and for what conditions. It is slightly disconcerting to get your paycheck and find that you are only getting half of what you would normally make. Ask me how I know.

Once you start a claim, you cannot assume that you will be paid automatically. Insurance companies handle a large number of cases on a daily basis. You are just one of thousands. You must keep in contact with the company to make sure that your claim is being processed in a timely manner, they have all of the paperwork they need and they are in contact with the right doctors.

You probably have a case worker at the Insurance company. Someone who is assigned as a liaison between you and the company. As soon as you can, find out who this person is and make sure that they have your current contact information. If you will not be able to speak for yourself, make sure they know who can. Then, make regular contact with case worker to make sure that your claim is being processed in a timely manner. You may even have to do some of the "leg work"--getting paperwork from the doctor and faxing it, making phone calls, etc.

Dealing with the disability insurance company has become a major part of S's life. He has multiple doctors and multiple diagnosis. All of these doctors have different recommendations. S spends a significant amount of time working with his doctors to make sure the paperwork reflects what is actually going. Even then, he has to fight to get his claim approved and it is often only approved for a few days at a time. He has made the comment to both his doctor and the insurance company that "I spend more time working on paperwork than I do actually working on my rehabilitation." I know that he has spent entire therapy sessions working on the paperwork with no time left over for therapy.

Not all claims will be this hard, but you must know your rights and who your case worker is. Without this information, your claim can (and often does) get lost in the system. This means you don't get paid when you expect to, which is frustrating and often harmful to your recovery.

Role Change and Acceptance

Five years ago, S and I had a conversation which defined our roles in our relationship. I was pregnant with our first child together (we each had children from previous relationships) and we were deciding whether or not I would return to work.

At that time, we decided that one of us would remain home with our child for as long as we could afford it. I had a very difficult pregnancy and severe postpartum depression, so I was the one who stayed home. Over the years, our roles solidified. I handled the housework, shopping and primary care of our children. He handled the "making money" portion of our relationship. It was a perfectly acceptable and comfortable arrangement for both of us. We were actually a little proud of our "conventional" roles.

When money got tight due to S being on short term disability after each of his surgeries, I began finding writing jobs which I could do at home. It was enough to bring in the extra cash we needed to make ends meet, but it still allowed me to retain my role as "Mom."

In the last month or so, we have had to re-look at how we handle things. Right now, the chances of S returning to work full-time are slim. I have had to restructure how I work in order to become the primary "breadwinner". This has been a huge blow to S's ego. He prided himself on providing for his family and the concept of not working is so very foreign to him.

It has also changed how I perceive myself and my work. Before, writing was more of a hobby. Something I did in my free time to bring in a little extra cash. I really didn't worry about getting new clients or establishing professional relationships. I was happy with what I had. Now I have to extend myself professionally, and it is taking some time to get used to.

Other role changes have taken place, also. S can no longer do major yard work, such as mow the lawn, shovel snow or weed gardens. I have had to take over those tasks. This is one area where acceptance has come easily for me. Mostly because every week I have at least two hours to myself as I tool around on the riding mower.

In exchange for my additional work hours and the fact that I am responsible for the outdoor tasks, S has taken over the day to day care of the children, the cooking and much of the light cleaning. This is another area where I struggle. The house and kids have been my "domain" for so long that giving up control is hard. I have learned to clamp my teeth hard on my tongue when the dishes sit overnight or the kids get more video game time than I would allow. It is not hurting anything, but my "Mom OCD" starts rearing its ugly head. It also bothers me that he gets more time with the kids than I do. But, I still work from home, so I get more time with my kids than most parents.

Once S and I both grudgingly accepted the change, the transition became much smoother. We are not totally happy with the way things are. It's going to take more than a month to break years of habit and expectation. But, we remember to laugh a lot and we talk to each other. We have always been each other's best friends and we have always communicated well. We make a concerted effort to make this transition as easy as it can be. We may not like it, but we can accept it and, right now, that's good enough.

Driving

One of the hardest things for me to get used to in this new life of ours is the fact that I am now the only driver in our family. I went from driving only when I absolutely had to (and it had to be a darn good reason) to doing all of the driving all of the time.

I am not afraid of driving, I just don't like to do it. I prefer to be in the passenger seat where I can knit, daydream, or simply talk. I prefer to be the one who hands the kids drinks, flips CDs, and squashes the backseat squabbles. I don't like to deal with traffic, watch for exits and do all the other "work" involved with driving.

S is now not allowed to drive at all. His pain increases drastically when he is simply a passenger. Driving is excruciating. He also takes medication that makes him drowsy and sometimes disoriented. It is simply not safe for him to drive.

I never realized how much time is involved in being the only driver. We live out in the middle of nowhere. The closest non-convenience store is over 20 minutes away. We have an hour trip twice a day to get our kids to and from daycare. Even when I combine trips, which I do every chance I get, at least 2 1/2 to 3 hours of my day is spent in the car.

It is a huge pain in the butt to not be able to say to S, "I'm in the middle of a project, can you run to the store for milk?"

He feels it, too. He used to enjoy driving. He was a truck driver for many years before he started working a desk. When he needed to get away for a bit -- to calm down or just think -- he would hop in the car for a bit of a drive. His daughter and he have their best conversations in the car. He can no longer do that.

It was really hard for me getting us to and from our vacation. It was a 10 hour trip one way. Before surgery, S would have driven the entire way or we would have split the trip. We definitely would have made the trip in a single day. This time the trip took over 24 hours, including an overnight stop both ways. It was hard on me, it was hard on the kids and it was hell on S. Not to mention the additional expense for a hotel room.

I catch myself thinking "when he can drive again..." only to have to stop and remind myself that he will never be able to drive again. Out of all the changes, I cannot seem to wrap my head around this one. I will always be the only driver. He will never drive again. When will I come to accept that? Why is it so hard? What is the hardest thing for you to deal with in your situation?

I Am Not a Saint

Nor am I a robot. I get angry, jealous and tired. I get mad at God and at S. I want life to go back to normal. I want a day off. I want a vacation free from worry and pain (his and mine) and stress. I want a partner that can keep up with me and help with the kids and mow the lawn. If you are offended by this, please stop reading.

That does not mean that I am going to leave this relationship. It also does not mean that I am not going to do what needs to be done. It does mean that sometimes I cry and scream and swear. I'm human. I have my own issues. Sometimes I'm extremely selfish.

I hate the TV shows, magazine articles and books that portray the spouse or parent of a disabled individual as a saint. That's just not normal. What is normal (at least in my experience) is a human individual who gets mad at the disability. Who cries when they realize that it is never going to get better. Who gets frustrated and pissed off because their life is changed forever even though they are not the disabled person.

Am I proud of my bad behavior? No, of course not. I feel terrible when S walks into the bedroom and I'm crying because I'm tired or just plain frustrated. I feel terrible when I get mad at the person that asks "How is S?" but never asks "How are you?" I would probably say "Fine" anyway, but that's not the point. The point is this damn disability affects me, too.

The reason I bring this up, other than to get the record straight, is because we just returned from our first full vacation since S's first surgery. It was not pretty. I am rather disappointed and tired. We learned a lot about what S can and cannot do but the "relaxing" part of the vacation never happened. At least not for me.

I will tell you about it tomorrow. Tonight, I am going to sleep. There is no rest for me and that is just a fact of life.