Good Days and Bad Days

We have good days and bad days.  All of us.  I didn’t think much of them when I was well.  It simply was either a good or bad day, and I knew the bad days would pass and I would have a better day tomorrow or maybe the next day.

It’s all different now.

When you have a chronic illness, the bad days are the norm.  There are, of course, levels of badness.  There are the normal bad days that pass as average to us.  There are the really bad days which mean we have to stay in bed all day.  But, honestly, most days are some level of bad.  Sure, they aren’t all miserable and horrible.  They are just days when our bodies hurt.  When our functioning is compromised by pain or disability.

Yesterday, I had a good day.

It was maybe my first really good day since I started getting sick.  It was a damned good day.  I had very little pain.  I was high-functioning.  I was able to do things like clean out my closet, go through old clothes and sort out for Goodwill, take care of general household chores.  I was able to do things.

It was pretty great, honestly.  I had to try to pace myself but it was hard not to try to cram everything into that good day.  After all, I don’t get many so I figured I should take advantage.  By the end of the day I was tired, worn out, achy.  But no pain pills yesterday, so that was pretty great, too.

Today, I woke up and I didn’t feel too bad.  I thought- hey, cool, maybe another good day.  And then I got out of bed and could barely walk.

Today, I am having a bad day.

And it sucks, after having experienced a good day yesterday.  It sucks.  But at least now I know a good day is possible.  I know it might happen again.  So, today, the thing that can get me through the bad day, is that the little possibility; what has to get me through all of this is hope.

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Nothing is at all the same

Today’s blog is going to be random, mostly because I haven’t blogged in two days and I have a whole bunch of little things I want to say.

First up: my hair is starting to fall out.  Thanks, MTX!

This was mother’s day weekend. I dislike mother’s day, partly because of my own  very challenging relationship (or non-relationship) with my mother. I could bore you with all the reasons mother’s day is awkward and not my favorite, but I won’t.  Instead I’ll get to my point (for once!).  My middle child gave me a frame with a poem he wrote at school.  It’s called “My Mother” and I am sure the assignment was to write some poem to honor your mom.  Anyway, his starts with “I don’t see you on weekends or during summer vacations, you are always at work. But I love you anyway.”

Ouch!  (I should point out that I have only started to always be at work the last two years so he had eight years with me being primarily at home, and “always” at work means I am home by six).  Anyway- him saying that reminded me how grateful I have been the last few weeks to have so much extra time with my kids.  I have been home for homework and snack time; I have been around to talk to them about their day.  So, yeah, it’s totally sucked to be sick, but it’s been very nice to be home more.  Going forward I feel like I need to find a healthier balance between work and home.  I don’t want to miss out on all the good stuff with my kids, and I definitely don’t want their memories of me to be as someone who was “always at work.”  Of course, that seems less likely now anyway, with my broken body telling me to chill out.

My other interesting weekend tidbit: I went to the theatre where I work so my daughter could see the children’s theatre performance.  It was a challenge getting there: my partner had to drive us, I had to take pain medication before we left, etc.  When we got there, I was nauseous and light-headed (thanks again MTX!), and it became evident pretty quickly that I needed to use my cane.  So, I hobbled into work with my cane, and ran into both my boss and my boss’ boss.  It was hard for me.  Part of me is so embarrassed  that I can’t be at work, that I am so broken.  Part of me was embarrassed I had to use my cane in front of my co-workers.  It was hard to be back there, to see things that are different that I didn’t have a part of, to meet a new employee that I didn’t help train, to be an “outsider” at the place where I have spent so much time and energy.  It was great to see everyone, but at the same time, I was so uncertain of my role there, of their opinion of me, of everything.  It was all just strange.

I guess some of it comes down to this: I am different now, both physically and emotionally.  I have a different perspective on everything.  I have different priorities.  I think differently.  Every choice I make now is based on my body.  I am no longer the person I was, but looking at me, the only difference is a cane, a slower walk, more deliberate movement.  I look the same, essentially, but nothing is at all the same.

Even my hair.  Maybe if it falls out enough I’ll look different enough to signal the changes to the people around me.  I hope not.  But I guess I need to find a bright side right?   If I find the bright side (like time with my kids), maybe I can find some peace with this whole new normal where nothing is the same.  Peace would be nice.

 

Mornings=Pain

I feel like I should warn you: I’m in a bad mood.

I really hate morning.  I was never a morning person, but now mornings are so awful, so painful, that I just absolutely dread them.  For whatever reason, the first two hours of the day, so many parts of my body hurt, parts that don’t hurt any other time, from head to toe I hurt.  Oh, I am always pretty sure it’ll dwindle within a couple of hours, when the prednisone, naproxen and Lyrica hit.  Til then I am miserable.

It’s hard to deal with mornings when you are in this much pain.

Add to that, no one in my house seems to get it.  I mean, how can they?  Until you have experienced this kind of pain on a consistent basis you can’t really imagine it.  So the uninitiated, the normal people, can try but the most they can come up with is a stubbed toe or maybe even the time they broke their arm.  After all, that kind of pain is bad, no one would quibble with that.  But I don’t think that’s a good comparison.  I am not saying my pain is worse than that, but that it is different.  Having a continual amount of high pain is different, is wearing on the mind and body, in a way that short-term pain just isn’t.  A big chunk of why this pain is so awful is the knowledge that it will be with me forever, that I may have breaks of days or weeks, but this pain is mine.

So no one in my house gets it, and that’s understandable.  And I try not to lash out.  I try hard not to tell everyone to leave me the hell alone until at least nine.  Most days I succeed.  But wow, it’s hard.

Today, it’s just a lot to deal with.  I hurt all over (in case you’re wondering my pain right now is probably around a 6-7 from head to toe), and I have a full day ahead of me, including physical therapy, and all of that just seems like way too much to handle. It feels like too much to expect of me to handle kid pick up, acupuncture, physical therapy, dishes, dinner.  It feels like too much to expect me to keep a positive attitude on top of all of that, to listen sympathetically as everyone else expresses their frustrations which seem so silly to me.  I know I am being unfair, and I don’t care.  I know everyone’s feelings are equally important, but today I just don’t want to do it.  I don’t want to be kind and supportive and understanding.  Instead, I want to take pain medication and hide.  I want someone to take care of me, to be kind and supportive and understanding of me.

But…that’s not the way it goes.  So, I need to pull myself together, ignore the pain until it becomes more tolerable, find some energy to go out and manage my day.  I need to find some damned spoons, because it’s just not going to work if I am out before 8 am.

Yeah, I hate mornings.  And pain.  And pain in the mornings.  But what can you do?  This is my life now, so I guess I have to make the best of it.

Please tell me I am not the only one who feels this way!

Side Effects

Let me be honest: I find side effects totally insulting.

Most of us with chronic illnesses take a whole lot of medications.  Most of those medications come with a long list of side effects.  As patients, we are forced to decide (more often than most people) whether the risk is worth the reward.  We must choose whether possible liver problems are worth relief from joint pain and swelling, whether mood swings are worth relief from inflammation.  Constant choices.  It’s exhausting.

I have learned to read ALL of the patient information on my medications.  I google them all and check multiple websites.  I make sure I know the rare side effects as well as the common ones.  I check for medication interactions before I take anything new.  Oh sure, I believe my doctor is smart and knows what the best treatment is for my RA and fibro, but I also believe mistakes happen.  I believe that my health care is ultimately my responsibility.  So I research, double check, triple check.  That too is exhausting.

But neither of those is why I find side effects insulting.  I hurt all the time.  I am tired beyond tired.  I am weak.  I get depressed.  So I take medication to help with those things.  Sometimes the medications help a lot, sometimes not at all.  But…all of them come with great big side effects that I must learn to live with.

So, on top of being in pain, being tired and weak, having depression, I now also: have difficulty sleeping (side effect of Welburtrin AND prednisone), have mood swings (prednisone), am a bit foggy brained for part of the day (Lyrica), have fish burps (fish oil), have occasional stomach issues (naproxen), and most fun of all, have a day or two of horrible fatigue and nausea (Methotrexate).

Those are my regular side effects from my medications.  What about the possible long term ones- hair loss, bone depletion, liver failure, kidney problems, ulcers, cancer.  Fun!

Is all that worth it?  Yes, probably.  I am not sure how I would feel without all the chemicals.  Probably horribly depressed and unable to actually move.  So yeah, the side effects are better than that life.  But here’s the thing I wonder, the thing that makes me get upset and insulted:

if scientists can figure out how to make these meds, can cure cancer, can find ways to travel to space, can do all the amazing things they can do, why in the hell can’t they make medications that don’t make us so miserable?  I know I’m asking a lot.  I really do.   But wow, those of us who have to take so many medications, so many really strong medications, have too many side effects.  It is TOO much, and I think scientists and/or drug companies should start thinking about chronic illness and chronic care in a different way.  Don’t make a pill that trades joint pain for cancer!

Ok.  Rant over.  As you might have guessed today is my post-MTX day, aka day from hell.  Day of fatigue, nausea and headaches, despite doubling my dose of folic acid.  But…I will stick with it.  Because if MTX works (in another two months, we may know!), it will likely be worth one day of hell if it gets me six days of functional.

And now I am going to bed.

Being Selfish: Learning to be a Parent Who is Chronically Ill

I have three children, ranging from age 8-14.  I have been a single mother for a large chunk of the youngest’s life, so I know a whole lot about self-sacrifice.  I know a lot about having to put their needs before my own.  I have had years of practice.   There were times I absolutely gave them too much, put myself too far into the background.  But for the most part, I think I struck a mostly healthy balance of their needs and mine (with mine, nearly always, in the background).

I can’t do that anymore.

Don’t get me wrong.  They are still at the top of the importance scale.  I still make sure they are tended to, that all their needs (and many of their wants) are met.  My partner does the same.  But I am no longer a distant fourth to them.  I am pretty well tied for first.  And that’s a huge, difficult adjustment.

Example:

This morning, I drag myself out of bed and start my morning, which includes eating breakfast, taking pills, and trying to survive the morning pain and stiffness.  The kids have gotten themselves out of bed (too early-grrr), gotten their own breakfasts and gotten ready for school.  Youngest comes out from brushing her teeth and says to me, “My throat hurts and my head hurts.”  My first response (and one I unfortunately said out loud): “Crap. You can’t get sick.”  Because I am selfish.  Because I can’t take care of another sick person right now.  Because I absolutely can not run the risk of getting sick myself.

I feel so guilty that I no longer seem capable of completely selfless responses.  I feel guilty that I can’t seem to be able to just put my own feelings in the backseat.  At the same time, I am totally aware that right now, it would be bad for everyone if I did put myself last.  The truth of it is: I need to get better.  I need to do all of the things I am doing right now to feel better, so that I can be their mostly selfless mother again.  I need to feel better so I can take care of them, and enjoy being with them.  And I have to take care of myself, have to put myself near the front of the line, in order to feel better.

I feel so so guilty, so much like a bad mother (even though deep down, I know I am not a bad mom. Maybe just not a great one right now). But I keep reminding myself of something that my best friend says when we as parents are making a choice for our kids (usually it’s deciding whether to buy some odd toy or whether to take them to, say, Chuckie Cheese): “You have to love yourself, too.”  That has helped me steer clear of so many toys that would have made me crazy, so many choices that I would have hated, and my kids have survived every one of those decisions intact.  So, now, when I am struggling with the guilt of making my health a priority, I remind myself that I have to love myself, that I have to do this for myself, for my sake and for theirs.  It makes it just a little easier to live with the decisions I make each day.

You have to love yourself, too.  A lesson for all of us, not just the parents.  A definite lesson all of us with chronic illnesses need to learn, to remember, to believe.

You have to love yourself, too.

Building a Team

One of the first books I read about chronic illness, You Don’t Look Sick by Joy Selak and Dr. Steven Overman, talked a bit about building a health team of doctors you feel like are really on your team.  These aren’t just doctors you go to because they were the first in the phonebook or because your insurance company made you.  They are doctors you feel have your best interests at heart and who really get what you want in your journey.  At the time that I read that, I had had exactly two doctors, both of whom I liked just fine, and I wasn’t really thinking about needing an entire team to help me.

But since then, I have had been to a few more doctors.  I have had a whole lot of conversations with various people.  I have expanded my care.  And I am realizing that I do, in fact, have a team behind me.  My team includes:

My Primary Care doc, Dr. W, who didn’t blink when I went in and said at the end of an appointment for something else, “oh and I have been really feeling awful for several months.  Very tired, weak; everything is hard to do.”  Instead, she ordered a ton of labs and promptly referred to me to an excellent rheumatologist.

Which brings me to Dr K, my rheumy.  I like her, though she isn’t warm and fuzzy.  There’s something about the way she doesn’t think you’re odd when you explain a symptom, the way she even remembers the phrasing (“my arms feel heavy”) to ask you about it later.  I also very much like that she and her staff never seem to hurry through an appointment, and yet never keep you waiting for long.

Next up, and this one seems silly probably, is the entire staff at the CDI (Center for Diagnostic Imaging) that is located within my rheumy’s building.  I have now been there for two ct’s and several xrays, and every person there is friendly, knowledgeable and helpful.  They explain everything they are doing, and truly have the patient’s best interests at heart. I will have all of my imaging done there, if I can help it.

Even though he’s an odd duck, I also have to add my shrink to the mix.  Dr. A always tells me weird stories about articles he read in journals, or books he’s read.  But he also explains his clinical outlook, and he doesn’t dole out meds like candy, the way so many other psychiatrists do.  I like that about him.

I also feel like my team is made up of some non-doctor types.  My pharmacist, Michelle, who knows me by name, remembers all of my medications and diseases, and always asks me how it’s going.  There’s my acupuncturist, the newest addition to my team, who isn’t intimidated by high levels or multiple problems.  She truly loves what she does and it has made me a believer in acupuncture, as a healing mechanism (even if it doesn’t work for me- jury is still out).   There’s Jean, the nurse at my rheumy’s office.  I have never met Jean because she’s not the nurse who helps with patients in the office, but every email and every phone call is routed through Jean, who always answers promptly and who is always supportive and helpful.   I also feel like I need to add my best friend L to my team, not just because she’s my best friend, but because she is so knowledgeable about all of the stuff I have been going through because of her own health journey; she has also been the one to encourage me to try alternative treatments and who found me my acupuncturist.  L is on my team because she gets how I feel without having any doubts, because she helps me figure out ways to feel better.  I couldn’t ask for a better friend (or team member!).

NOT on my health care team: the urologist who was so disorganized and so incredibly unhelpful at my own appointment with him and who has never called me back with test results over a month later (I got the results on my own, thank you very much).  But that reminds me, I need to find a new urologist!  *Sigh*

So far, I feel pretty good about the team I assembling.  I hadn’t thought at the beginning of this that I would need a whole team, but I really do.  Today, I am hoping to add a physical therapist to the mix, but we’ll see how I like them.  The truth is, these diseases are hard; living with chronic pain is hard.  We can’t do it alone, and we shouldn’t try.  I have been so lucky to have found a good team without too much effort, but I know it won’t always be this easy.  I know it isn’t that easy for most people.  But, I feel so strongly that it is necessary that all I can really say to people who don’t have a good team is keep trying!  It’s worth it.  Because we all need to know that we have a group of people in our corner, people who don’t just have good attitudes but who genuinely want us to be well and don’t feel like there is only one right way to get there. We need doctors, and health providers, who have open-minds and a willingness to try new things.  We need people who will answer our questions honestly, who will give us information and allow us to make our own decisions (when possible, of course).

I have been feeling pretty blue lately, pretty discouraged with how crappy my body feels all the time.  But I do know, at the bottom of all that worry and fear and sadness, that I have a team who will help me feel better eventually.  I just have to stick with them and be patient.  I just have to do my part on the team, hard as it may be.

30 Things about My Illness

I am not 100% sure what I want to talk about today because there’s too many little things on my mind, so I’ve decided to adapt something I found on My Pink Bubble World (thanks for posting this Jennifer!).  Not only is it Lupus Awareness month, but it is also Arthritis Awareness Month (which makes me wonder if it shouldn’t just be Autoimmune Disease Awareness Month).  Anyway, here’s 30 Things About My Illness you may or may not already know.

1. The illness I live with is: 
Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease

2. I was diagnosed with it in the year:  2012

3. But I had symptoms since: 
At least since the fall of last year but I have had some occasional symptoms for years.  The DDD has been going on for about 10 years.
4. The biggest adjustment I’ve had to make is:  
I used to be the go-to person at work and at home, but I can no longer give 120% to everyone all the time.  I can maybe give 50% some of the time.   I have to let my body be in charge of everything I do.

5. Most people assume: 
I don’t know.  I haven’t been able to get out much and so my time with people since diagnosis has been limited.

6. The hardest part about mornings are:  
EVERYTHING.  Seriously.  I hate everything about morning.  I hurt the most in the morning and have the most limitations on my mobility in the morning.  Plus, I have to start yet another day with lots of pain.  It can be difficult to get over those morning grumpies.

7. My favorite medical TV show is:  
Grey’s Anatomy.

8. A gadget I couldn’t live without is: 
My iPad.  Also my Kindle.  I can’t hold regular books for long anymore, so the Kindle has been so great to have.

9. The hardest part about nights are:  
Having difficulty falling asleep.  I hate laying in bed at night with my mind going crazy.

10. Each day I take __ pills & vitamins.
11 1/2 unless I need pain meds.  Wednesdays I take 15 1/2.

11. Regarding alternative treatments I:
am on the fence.  I have started acupuncture, and I haven’t yet decided if it is helping or no.

12. If I had to choose between an invisible illness or visible I would choose: 
I don’t know.  Probably visible because it’s hard to get those “you don’t look sick” comments/looks.

13. Regarding working and career:   
I just don’t know yet.  I haven’t been able to work in almost two months, but I am really hoping to be able to go back part time soon.  It won’t be the same as it was before, and I don’t know if ever will be, but I miss being around people!

14. People would be surprised to know: 
how much of my day is spent planning around pain and evaluating how I feel.  I can get really tired of thinking about how I feel.

15. The hardest thing to accept about my new reality has been: 
I will never be who I was before.  I will have to live with these diseases for the rest of my life.  We may find good treatments that put me into remission for a period of time, but it is impossible to know if/when that will happen.  Everything been a great unknown is hard for me.

16. Something I never thought I could do with my illness that I did was: 
I don’t have an answer yet.

17. The commercials about my illness: 

Do not in any way capture the reality of them.  Also very much trivialize the horrible side effects most of the treatments can have.

18. Something I really miss doing since I was diagnosed is: 
Working.  Walking at the lake with Bill.  Tucking my daughter in upstairs every night.

19. It was really hard to have to give up:
Alcohol and coffee.  Though I wasn’t much of a drinker of alcohol and I do still drink about half a cup of coffee everyday.

20. A new hobby I have taken up since my diagnosis is:
Lots of iPad apps.

21. If I could have one day of feeling normal again I would:  
Have a vacation fun day with Bill and the kids.

22. My illness has taught me: 
To relax.  To not worry so much about doing things perfectly.  To not worry so much what other people think of me/expect from me.  To listen to my own instincts and needs.

23. Want to know a secret? One thing people say that gets under my skin is: 

You’re too young to have that.
24. But I love it when people: 
Treat me like a normal person.

25. My favorite motto, scripture, quote that gets me through tough times is:   
It’s not a motto/scripture/quote but the sppon theory has really helped me.


26. When someone is diagnosed I’d like to tell them:  

It’s okay to be pissed off and to grieve; it’s okay to be angry and bitter.  And then, you need to let that go and find a way to make your life work around your illness.  It will be different than it was before, but it doesn’t have to ruin your life.

27. Something that has surprised me about living with an illness is:
How much I would change as a result of this. I feel like my whole outlook on things has changed because I have had to change my behavior so much.

28. The nicest thing someone did for me when I wasn’t feeling well was:   

A very funny care package from my co-workers.

29. One thing I wish everyone could know about my illness:

Rheumatoid arthritis is not an old person’s disease and it is NOT just about achy joints.

30. The fact that you read this list makes me feel: 
Good.  I hope more people will try to talk about their illnesses, invisible or otherwise, so that we can try to become more thoughtful of one another.

Picking a Number on the Pain Scale

I have been thinking a lot about measuring pain.  Yesterday I mentioned that I think people with chronic pain have a different scale than “normal” people.  Our baseline is set differently.  For example, to me a good day is when my pain is a 2-3.  I can not remember a day in the last year (maybe longer, when I think about it) when my pain was lower than a 2.  So for me 2=0.   I have gotten pretty good at analyzing my body, trying to figure out what hurts and how much, trying to figure out which disease is acting up.  You have to do that when you have multiple issues, so you know what’s working and what’s not.  So each day, I am choosing between my RA, fibro, and my DDD.  Almost everyday there is some issue with my back (DDD) and typically my RA and my fibro trade-off (which I feel is pretty considerate of them).

Today my pain was around a 6. Some days I have localized pain that is high and the rest of me is at the 2 baseline.  Frequently, it will be my back or my hands that hit a 7-8 while the rest of me is pretty ok.  Today I was a solid 6 from head to toe.  That kind of pain is rough for me because everything hurts.  I can’t use my hands, it hurts to walk, but it hurts to sit.  Etc, etc.  When I told my acupuncturist that I was 5-6 today and that it was pretty bad she asked, “That’s bad?” I hesitated a moment and I said, “yes when you have already taken a lot of medication and you are at 6.”  What I should have said is that when I say six, I mean that it is hard to function.  I have taken my normal meds plus Tramadol; I have stretched and tried to walk it out; I have done everything I can and I am still miserable.   And maybe it was the fact that so many different things hurt today that made the 6 seem so awful.  Who knows.  Either way she stepped up my treatment and I left feeling better.  Hopefully it lasts.

While I was sitting with all my needles, my acupuncturist talked to a new patient nearby (I go to a community acupuncture clinic so there are several people being treated in the same room).  The woman said her pain was a 2-3, and that it was really bad.  Linda asked the same question- “That’s bad?” and the woman explained that for her, having pain at a 2 meant that she had difficulty walking which was a big adjustment because she’s a runner.

All of this got me to thinking about pain levels, about how we measure pain, about how we compare ourselves to others based on where we are on that scale.  I started thinking about doctors, and how difficult it must be to interpret people’s answers to the pain scale.  If I tell my doctor I am at a 2, I will get happy remarks.  But there may be others who say they are at a 2 and the doctor needs to be concerned.  But how do they know who is who?

It all seems so crazy subjective to me.  It’s no wonder that getting diagnosed is difficult when you have chronic pain.  It’s almost a guessing game!  Maybe doctors should ask patients to create their own pain scales with their own personal descriptions to make it easier to understand each patient.  Mine would like something like this

0-1: obviously I am dead because this doesn’t happen

2-3: a pretty good. Some aches and pains, but nothing major

4-5:  I hurt.   I need pain meds.  I am limiting my activities considerably.

6-7:   I hurt a lot.  I need a steady stream of pain meds, heat, stretching, and I am probably still pretty miserable despite all of that

8-9: Extreme pain that is severely limiting activity; pain unresponsive to medication, heat, etc.

10: I have never ever said I was at a 10 despite years of pain and having 3 babies so if I ever say this, someone should get me to the ER quick because I am clearly dying.

What about you?  What’s your pain scale?

Limping Along

Shrink appointment this morning went fine.  No change in dosage.  We talked a bit about situational depression vs clinical depression.  He explained that they look for a couple of things to determine if someone is experiencing clinical depression.  The three main areas: do you have interest in things, do you show interest in socializing, do you have motivation to go out?  If the answer is no, then they look at timing.  He said a few days is no big deal; the cut off for them is two weeks.  Two weeks of not have interest and not wanting to go out because you’re sad or feel like it’s not worth it means that you may be clinically depressed and may be helped by medication.

He said for me it seems like I am just adjusting to my new reality and things are as they should be.  I suspected that would be the verdict, so it was no surprise.  And frankly I am glad not to be changing yet another medication.

He also asked if the pain was manageable.  And I said more or less, with medication.  He said that his view of manageable pain (and I think his understanding of the medical view of manageable pain) is that if you’re limping along then it’s manageable.  I found it interesting that he used the word limping.  So often, we with chronic pain, think of our old lives when we walked normally, but the truth is our new standards are different.  I was reading something earlier (I wish I could remember where!) that said people with chronic pain have a different scale.  A four pain level is our new zero.  I have found this to be true.  A good day is no longer a pain free one, but one that is tolerable without much pain medication.  So yeah, manageable pain is when we are limping along.

On another front, third dose of MTX is behind me.  This week I have now added the dreaded nausea to the fatigue.  Frankly, I feel pretty awful all around.  Tired, nauseous, achy.  Etc.  Really looking forward to the side effects of this med being behind me.  Or manageable!

 

Failure

Yesterday I had an interesting conversation with my best friend, L. L and I share many symptoms, though she has been dealing with her chronic illness much longer than I have.  She’s also been cursed with a long diagnostic process which isn’t quite ended yet, while my road has been a whole lot smoother.  Besides those differences, though, our illnesses are often pretty similar, as are our attitudes toward being sick.

Yesterday we were talking about a potential plan for me to return to work part-time soon.  I’m very happy about the idea of going back to work part time; frankly I am bored out of my mind, at home everyday.  Plus, I enjoy my work most days, and I miss my co-workers and the volunteers I interacted with on a regular basis.  So I’m looking forward to being able to work again.  That said, I am pretty worried about going back because I am not sure what I am capable of doing physically. How many days will I be able to work? How many hours per day?  Will the commute be too much?  Will the stress make me worse?  Is the walk to and from the bathroom going to be too challenging on bad days?  There are so many questions running through my mind that it makes me want to just say I can’t go back.

But L. very correctly pointed out that one of the rough things about being chronically ill is that we must set ourselves up for failure on a regular basis.  The truth of the matter is I may not be able to work as much as we are planning; I may not be able to handle the drive.  But I have to try.  And I have to realize that I may fail.

Anytime we, as the chronically ill, make a commitment, we are setting ourselves up for failure.  Oh sure, we will not always fail.  But we must be prepared everytime for the “what if” to happen.  I want to take the kids to a movie this weekend, but I may not be able to do it.  I have an appointment tomorrow morning, but I may not be able to drive.  Not knowing if I can follow through on my commitments is so hard for me, but it is impossible to go through life refusing to commit to anything.

So we must accept that sometimes we will fail.  Sometimes we will disappoint our friends and family.  Sometimes we will look foolish or inconsiderate.  Sometimes we will seem selfish and rude.  But we can’t live by what others think of us, by what others expect of us.  We can’t live by the rules others set.

Instead we must be true to our bodies and to ourselves.  It is good to make plans, but it is also good to break those plans if we need to.  It is so unhealthy for us to force ourselves to fulfill obligations that we physically shouldn’t.  It is unhealthy for us to ignore the warning signals our bodies send to us.

So, we must make ourselves aware that failure is an option.  It is ok to try and fail.

To make this easier, we must communicate with our friends and family, our co-workers, that when we make plans we will try our best to keep them, but that we may have to cancel.   If we are honest with people about our abilities, and honest with them that we will do our best, then it is much easier to fail.  Oh sure, it will never be easy.  But it is easier if we don’t feel like we are constantly surprising people with disappointing news.

Of course, this is all easier said than done.  I don’t want to fail.  I want to know when I make plans that I can keep them.  I want to be dependable, reliable, as I always have been.  Now, I have to be content with trying my best.  Now, I have to put myself first, another hard thing to do.  Now I know that I have to learn to fail.  And I have to set myself up for that failure, over and over again.  To do otherwise would mean never really living, and that’s just not an option.