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Home > Blogs > Caring for Siblings > Trish's Blog > Chronic Pain Rears Its Ugly Head

Chronic Pain Rears Its Ugly Head

Sand, meet ostrich.

Yep, I can be an ostrich when it comes to my husband’s chronic pain.

Dinner in Rome

Before I go any further, though, let me be clear about a few things:

1. I love my husband;

2. I had a fantastic vacation of a lifetime (of which I hope there are many more!);

3. Husband (also known as Richard who sometime blogs here and cares for his mom) has given his permission for me to discuss this;

4. I’m going to be brutally open and honest;

I usually write about caring for Robert or about epilepsy or being a working caregiver.  Occasionally, I’ve mentioned Richard’s chronic pain.

When we married fifteen years ago, we combined his daughter and son and my daughter into one unified family and the back pain came along for the ride.  Between surgeries, treatments, medications (some hits, some horrific misses), it has been a part of everything.

Almost from the get-go, Richard had to stop working, we filed bankruptcy, medication misses kept him from driving for a while (a real challenge with three active kids!) and, of course, he was in constant pain.

The intrathecal pump installed several years ago, in combination with prescription painkillers, has been a life-saver.  We are back on our feet financially, Richard is able to drive again and while his pain is constant it is more manageable.  We have settled into a routine where he knows when he pushes himself he allows himself a few days to recover. I’ve learned not to nag him about what he should or should not do (okay, okay, I said I’d be open and honest: I still occasionally shake my head at him when he’s doing something he shouldn’t).

Coping with this for so many years and developing routines has allowed me to almost forget how we have made so many adjustments in our day to day life in order to manage his pain and keep it at a minimum.

I can be such an ostrich but it is a comforting place to be sometimes.

However, it was also my downfall on our Most Wonderful Vacation Ever (enjoy the gratuitous vacation photo). :-)

While I was madly preparing for our vacation by making sure Robert was well cared for and my absence from work was covered, preparation for a long, overseas trip with someone who has relentless, unforgiving, chronic pain consisted of a passing thought of “if Richard is tired or in pain, he will rest.”

Worst. Idea. Ever.

Some things we would do differently next time:

1.  Do not have three legs to an already long flight.  There were too many times we rushed to catch our next flight and too many opportunities for luggage to be lost.  Which it was.

2.  Ask for assistance!  We both thought running (or walking very fast) to the next gate was acceptable.  It isn’t.  Richard was already in pain from a long flight and one of us (probably me since I wasn’t in extreme pain and theoretically should have been thinking clearly), should have just asked the flight attendant to arrange to have a cart or wheelchair pick us up upon landing or sucked it up and made arrangements to make the next flight.  Oh, the benefit of hindsight!

3.  We will never, ever put Richard’s pain medication in our checked luggage.  Richard’s bag was lost for two full days once we made it into Rome and his minimal extra medication he had with him had already been taken to help alleviate the pain from the close to 24 hour flight.  The decision to put the medication in the checked bag was made innocently enough (Richard’s pump delays him through security already and he didn’t want additional delays because of medication).  Next time: it’s going in our carry-on just like my shoes did (you don’t think I’d risk losing my shoes, do you?)

A few things we did right (most, by accident):

1.  Since we were with our two daughters and one of their boyfriend’s, it was actually more economical to book a private tour at various destinations than if we had a group tour through the cruise ship (our vacation was both on land and by cruise).  This worked out because when Richard is in pain he is cranky, irritable, and not pleasant to be around and awful in crowds.  It was best we did the private tours since seeing the inside of an Italian jail for assault was not on our bucket list this trip.

2.  We relaxed.  Yes, there was the usual sight-seeing and rush to pack in as many activities as possible but there was also a lot of time to relax by drinking cappuccinos and enjoying gelato and the occasional daily glass of wine.  It took us several days of being told by Italians to “just relax” to realize how high-strung us Californian’s really are (who knew?).

3.  Richard took breaks.  Not as often as I think he should have but I have to give him credit that he at least did take breaks.  Our visit to Cannes (yes! That’s where the famous film festival is held!), was particularly difficult for him.  The kids were exploring the beaches ahead of us and Richard finally had to stop and sit.  We left the kids (I use that term loosely since they’re in their early twenties) to explore the beautiful seaside town and Richard and I took a more leisurely pace in our exploits.

Now that we’ve been back for a week or two, I can clearly see what we should have done differently to make Richard’s pain more manageable.  Of course, in the throes of his pain and the lashing out verbally at the nearest person (usually me), I was ready to never go on vacation again.  At least, not together.

However, I really think with more preparation, more built-in relaxation times and a little less lost luggage, we can manage the pain better.  Whether we are traveling or going about our daily lives, unforeseen crap is going to happen.  The reality is that being in pain makes it extremely difficult to deal with that extra crap.  A person with chronic pain has zero extra reserves to deal with anything except their pain.

As with so much in caregiving, preparation is critical. I won’t stick my head in the sand again, though, by being delusional and thinking the next time we travel will be all roses and sunshine and butterflies.  Both us of will have to prepare more and hope that Richard’s pain management will benefit from that preparation.

Of course, since I need to test my theory about preparation helping with the pain I’m going to start planning our next Most Amazing Vacation Ever.

About Trish

Avatar of Trish
I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

4 comments

  1. Avatar of ejourneys

    That’s a great checklist, Trish! I love your Lessons Learned — both here and on Table Talk.

    I totally get, “Coping with this for so many years and developing routines has allowed me to almost forget how we have made so many adjustments in our day to day life…” I have my own version of this. For me, the ostrich position is just the fact that I’ve habituated for so long. There’s reality, and then there’s our alternate reality. :-)

    As a traveler, you and Richard were not only adapting to a new environment. You were adapting to at least two new environments. I love that you are planning your next vacation and can apply those Lessons Learned. I especially love that in spite of everything that went wrong (and because of everything you did right), you both still had a great vacation! :D

    PS: Love the photo!

    • Trish,

      As a medical professional treating patients with chronic pain, your article is incredibly helpful. So often, traveling with someone living with pain is very challenging. Your tips are all about preparation, preparation…

      I’ve copied it for my staff to give to patients and their families before travelling. I’ve also re-tweeted it this morning.

      I just found your blog recently and admire all the work you do.

      Kind regards,
      Dr. Michael Cooney
      Rutherford, NJ

  2. Avatar of Denise

    Hi–I LOVE that photo. So sweet!!

    On paper, it seemed like the flight transfers would help–Richard could get up and stretch, get a break from being confined to a seat. I think that’s something you don’t know won’t work until it doesn’t work.

    It sounds like you’ll be ready for your next European vacation!!! And, I hope the next trip arrives much, much sooner than you ever could have expected.

  3. Avatar of

    Hi Trish,

    Welcome back and thank you for sharing your trip, the best parts and the not so best.

    I love how you talk about your routine as almost masking the adjustments. So true. It shows how you both have worked together in a very difficult situation.

    I’m glad there will be more vacations (: more that you can now take all you’ve learned right with you.

    Hope you both have a relaxing week-end.

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