Pain

As I've mentioned before, I spend the majority of my day sitting in a recliner. I have a barbecue grill sitting on the deck on the back of my house. The distance between the two is approximately 25 feet. As long as I am sitting in my chair, with my feet up, and my head supported, my pain level is very manageable.  But if I get up and walk around, that all changes.

Today is Memorial Day.  As is the custom with many people on this holiday, we are having a barbecue. I got up from my chair, walked the 25 feet to the grill, and moved the ribs from the grill to a platter.  I then opened up the package of hamburger patties, and started putting them on the grill.  At this point I’ve been standing for perhaps five minutes.  By the time I got eight burgers on the grill, I could feel my back start to lock up, and it became difficult to breathe. It feels like someone has wrapped my lower back in a vise and is squeezing as tight as they can.  With my daughter's help, I managed to get the last burger on the grill, then I hurried back in the house, washed my hands at the sink (while holding on to the sink for support!), then collapsed onto one of the dining table chairs.  Took a few minutes to catch my breath enough to stand up again, then went back to my chair and sat down.

There is very little I can accomplish in the five minutes or less I am able to stand.  Even with my walker I only last about ten minutes. And if I try to push it, I end up too exhausted to do anything at all.  Should I pop a pill to take care of the pain?  I could, and I do occasionally take tylenol for arthritis, but I am unable, due to stomach problems, to take NSAIDS, so the only other pain control option is narcotics.  I'm trying to put off jumping that bus as long as possible, as there is almost no exit once you're there.  Instead, I use heat & cold therapy, stretching, and isotonic exercises.  They help a little, but mostly, I just put up with it.

Pain sucks.

It Could Be Worse

Up until last year, I had great fun with holiday preparations.  I love to cook, and getting all the cooking and baking done for Thanksgiving was quite enjoyable.  Last year, though, things changed.  During the year before last, my ability to stand and walk unassisted rapidly declined.  By the time Thanksgiving rolled around, I could no longer stand long enough to do more than very short tasks.  And getting up and down became more of an ordeal as well - no longer could I quickly get up to check on something, as it took several minutes just to get from a sitting position to a standing one.

This year, things are no better.  I use a walker now, but my kitchen is a small galley kitchen, making it difficult to move around with a walker.  So how do I get ready for the holidays?  Well first of all, I enlist the help of my husband and children.  Thankfully, I have several children who are old enough to take over for me.  My husband is also a tremendous help.  I also make lists.  I have a list of cleaning tasks, one that shows when each food item needs to be prepared, cooked, etc., and one of all the different platters and serving dishes that need to be brought out of storage.  I have others, but those are the three major ones.

I've also adjusted my priorities.  I've cut down the number of dishes, as well as the complexity.  My kids really don't care for fruit pies, but are happy to eat lots of pumpkin, so we will have just one kind of pie.  We'll use pre-made crusts, boxed stuffing mix, and canned veggies.  I thought about buying one of those pre-made turkey dinners from the grocery store, but decided my kids need to learn how to do the cooking anyway.  So this year I am sitting here in my lift chair, being the director.  The kids have been assigned jobs, and my job is to monitor and guide them in completing their jobs.  I am also making cute little turkeys to use as place cards.

Is this the way I'd like to do Thanksgiving?  Not really.  What I'd prefer would be to have a big family dinner, with lots of different dishes, lots of extended family, and lots of friends.  But the reality is, that simply is not realistic for me at this point in my life.  So instead, I am being grateful that I have a husband and children who can pick up the slack.  It could be much, much worse.

It's the Little Things...

A couple of nights ago I sat on the end of my bed and folded a couple batches of laundry. Actually, most of it I just put on hangers and handed to my husband to hang up. I only had to actually fold perhaps five items. Doesn't sound terribly difficult, does it? I didn't think it did, either. Yet halfway through the first batch, I found myself short of breath, and having to take breaks to rest my arms. By the time I finished those two batches of laundry, I was exhausted.

I spend most of my day sitting in a recliner, with my feet up. I browse the web, read books, watch movies, and do various crafts. I also try to guide my children as they do their various activities. I am able to provide plenty of love, snuggling, hugs, etc. But I am not able to stand at the kitchen counter and prepare a meal (I am barely able to fix a single sandwich!). Going downstairs to put in a load of laundry is out of the question, as is bringing that load back upstairs. I can fold it, but can't actually put it away, but then I need a rest afterwards. If a child (or pet) spills something on the floor, I can't clean it up.

Thankfully, I have a willing husband and somewhat-willing children to take up some of the slack. But honestly? My husband is stressed as it is, what with dealing with a disabled wife (and two disabled children), and two part-time jobs (while looking for more work). Add on taking care of the finances (which I used to do, but find it increasingly difficult, what with memory loss), doing laundry for me, our 6yo, and himself (the rest of the kids are responsible for doing their own laundry), yard work, auto maintenance, and church responsibilities, and he's stretched pretty thin. The kids can do quite a bit, but the two that are old enough to really do things well have their own issues. The oldest is a college student, and will be moving out in a few months. She helps as much as she can, but that isn't always enough. The next oldest, at age 17, has rheumatoid arthritis and fibromyalgia. She is not able to do much more than I am.

Frankly, I wish we could afford a maid, or at least someone to come in and do a thorough cleaning and organization (as well as massive decluttering!) of my house. Perhaps then it wouldn't be quite so difficult for the kids & my husband to manage. But who knows - it wouldn't get rid of the problem of my disability. Nevertheless, I still have frequent fantasies of "Clean Sweep" coming in and doing a sweep of my whole house! A girl can dream, can't she?

All that said, though, and it comes down to this: with all my problems and frustrations, I am grateful that I have a home (even though it's messy), a husband who loves me (and is willing to help, despite the stress), and children who really try. That's all I really need, after all.

It's All In Your Head

Recently a friend was talking about her husband, and his seeming inability to understand her depression.  She mentioned that she was frustrated with a side effect of her medication, and his response was to just stop taking the medication.  She told him that part of the reason she didn’t want to stop her medication was because it allowed her to be a better partner to him.  He then made a comment that he wouldn’t choose to be with someone who needed medication for the rest of her life.  Clearly, this hurt her deeply. 

The worst part of this whole scenario is that it is all too common.  Too many people think that mental illness is “all in your head”, and can therefore be somehow “willed away”.  This is simply not true.  Sure, mental illness is “all in your head”, but only because that’s where the brain happens to be located.  Mental illness (not “the blues") is a physical illness caused by a chemical imbalance in the brain.  The extreme complexity of the brain and its function means that treating mental illness requires a wide assortment of “tools.”  Medication is one of these tools, as well as individual counseling, group therapy, exercise, and diet.  The mind-body connection is one that has been largely ignored by western medicine until only recently.  Eastern medicine, however, has long seen the link between the mind and the body, and uses that link to treat any number of physical illnesses, as well as mental illnesses.  They understand that what the mind experiences can affect the body, and that what the body experiences can affect the mind.  The two are not separate, and should not be treated as such.

The complexity of the brain is what makes treating mental illness so difficult.  We know so little about the brain and its functioning, and much of what we do know is based on guesswork.   That’s why there are so many different medications available, and why it is so difficult to find the right combination to treat each patient.  What works for one person may not work for another, and there is no apparent reason for the difference.

Depression is an illness, just like any other illness.  It requires a certain amount of self-care, and that sometimes includes taking medication as prescribed.  And as with any chronic illness, sometimes that medication is required for life.  Taking medication for depression is no different than taking it for any other chronic illness.  It is not a sign of weakness, and should never be construed as such.  If anything, being willing to admit to and seek treatment for mental illness is a strength.

For more information about mental illness, please contact NAMI – the National Alliance on Mental Illness by clicking on the image below.

If...

If they had a brain, they wouldn't be disabled/poor...

If she’d just exercise more…

If he’d just pray harder…

If she wasn’t so lazy…

If she just ate healthier…

At one time or another, we’ve all probably thought, or even said, something like these statements.  As outside observers, it is very easy to make snap judgments about someone, without knowing all the facts.  But in reality, we don’t know anything!

Here are a few responses to the above statements:

Just because someone is disabled doesn’t mean they are mentally challenged in any way.  A person's physical capabilities have absolutely no bearing on intelligence.  Along the same lines, a lack of money is not always a direct result of a lack of education, training, or intelligence.  Sometimes, unavoidable life circumstances are such that a person finds themselves, or their family, in difficult financial straits.

Yes, exercise is an excellent way to achieve, and maintain, good health.  But sometimes a physical limitation keeps someone from exercising, no matter how much they would like to exercise.  In some cases, exercise can actually exacerbate a problem, rather than resolve it.

I am a person of faith.  I believe that if God wants to heal me, He will.  However, I also believe that He does not necessarily want me healed.  I do not believe that if I just pray hard enough, He will heal me.  He will only do so if it is His will.  Besides, since becoming disabled, my life has been made richer and fuller.  Trials tend to build our character and make us stronger.  So in that sense, I am grateful for my disabilities.

Laziness has nothing to do with health.  I know plenty of very healthy people who prefer to sit around and do nothing.  I also know plenty of disabled people who are quite active.  Disability is not caused by laziness anymore than health is achieved through activity.

Healthy eating is beneficial to pretty much everyone, but it is not a cure-all.  Neither is eating poorly the cause of all disabilities or illnesses.  I believe it is important to pay attention to how various foods affect you personally, and adjust your consumption of them accordingly.  For example, I feel healthier when I eat a diet high in carbohydrates, whereas my mother feels healthier when she eats a low carb diet.  No diet is perfect for everyone.

To sum up: we’re all different, and we can’t know what another person is thinking.  It is not our place to judge others, but simply to do the best we can with what we have.

The Economics of Invisible Illness

Having an invisible illness can be very costly.  If you are lucky enough to have private insurance, some of these costs can be mitigated, but even then, co-pays and non-covered services can add up very quickly.

In my own case, the cost for my medications each month is more than $2000.  I happen to qualify for state medical assistance, so I only have to pay a small amount each month myself.  But if I were covered with a typical private insurance plan, I would likely pay nearly $500 every month.   Then there are my doctor visits.  I see a rheumatologist monthly, and a mental health therapist bi-weekly.  Again, because I qualify for state assistance, I only pay a small amount for these visits.  But if I had private insurance, I would probably pay somewhere in the neighborhood of $175 every month.  That’s a total of $675, every month, for medical care.  I’m willing to bet that most healthy people don’t spend anywhere near that much on health care. 

It is very easy to assume that health insurance will cover everything, but even with the best plans, the out-of-pocket costs add up very quickly.  In my own family, because I also have two children with invisible illnesses, we find ourselves treading the fine line between enough money and not too much.  Because of our illnesses, unless my husband is able to find work that pays considerably more than most jobs in our area, we simply cannot afford to NOT have state medical assistance.

I used to think that people on state assistance were just lazy.  I was wrong.  I’m sure there are lazy people on assistance, but there are lazy people everywhere.  And honestly, the paperwork involved with maintaining state assistance is quite daunting.  It is hard work being poor!  If you work a little harder, or get a little luckier, and find yourself with more money one month, you will lose your benefits.  And until you make enough money to not only feed, clothe, and shelter yourself, but also cover your medical care, you are simply out of luck.  You’re caught in a vicious cycle, with no real hope of escape.

I don’t have an answer.  All I know is I wish we didn’t have to utilize state assistance, but I’m grateful that we have that option.

Redefining Supermom

There is stuff all over my house.  Papers, books, blankets, toys; you name it, we probably have it somewhere.  We rarely sit down to eat at the table, because it is usually covered with more stuff.  Most people would probably say my house is messy.  Maybe they’re right.  For years I thought I was a horrible mom because of my messy house.  After all, as a mother, shouldn’t I be able to keep my house neat and tidy, prepare balanced meals and snacks, and give my children all the love and support they need?  At the same time, surely I should be able to be the perfect wife, right?  After all, isn’t that what it means to be a good mom?

I have one word to say to this: BALONEY!!

I have been ill for most of my adult life.  I wasn’t diagnosed with anything till the summer of 2000, but in retrospect I believe I have had these issues much longer.  I have struggled with being the “perfect mom”, and have never actually made it.  But now, after years of therapy, I think I finally get it.  So this is what makes a perfect mom:

• She loves her children.
• She does her best, even if her best isn’t very much, to care for them.
• She teaches them to be good people.
• She gives them the tools or skills they need to be productive citizens.
• She ignores anyone who tries to tell her she’s not good enough, and instead trusts her instinct or her own personal faith.
• She is aware of how much energy she has, and prioritizes her life accordingly.
• She doesn’t worry if some things have to be ignored, passed by, left behind, etc, but instead focuses on what is most important for her children.
• She recognizes that what is important for one family is not necessarily important for another.

My children, who range in age from 6-19, are all reasonably healthy.  They have food to eat, clothes to wear, and things to do.  They are intelligent, independent, and responsible, as much as is appropriate for their ages.  They are generally respectful, obedient, and honest.  They play well with each other and their friends, with minimal arguments.  They like to create things, build things, and do things.  This makes messes, but that’s good.  It means they aren’t sitting in front of the TV zoning out.  They do watch TV, and they play on the internet, but generally they are very interactive about it.  They’ll Skype with their friends and cousins, play online games together, and generally have fun.  They also love each other, and respect their parents.

I am SUPERMOM!!