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Posted on 29. May 2013

Road Blocks

by Rebecca Zook

Vacations mean different things to different people. Some crave pure relaxation, some excitement. I think my husband, Ed, and I were looking for a combination, and over the course of a vacation week, we also learned a bit more about ourselves.

We just got back from the mountains of North Carolina. It was actually a delayed honeymoon (married in December). I rented a cabin in the woods with a full kitchen since eating out is almost impossible for me due to food allergies, and, overall, staying in a home is much more sanitary than a hotel room when you have a primary immune deficiency. Plus, we are both introverts, and this certainly catered to a need for exclusion.

My husband loves to hike and has many stories of previous adventures. I had stressed to him from the beginning of our relationship that due to lung damage from common variable immune deficiency and other issues caused by my various autoimmune diseases, I was limited in what I could do. In our day-to-day lives back in relatively flat Texas, I get physically tired at times, but the diseases don’t really slow me down that much. In the mountains, hiking uphill was another story completely. I was shocked at the difficulty I was having - shocked at my inability to catch my breath and at times having to stop every few steps. Ten years ago, I could have sprinted through the forest like a deer and not thought twice about the thinner air or steepness of the trail. I didn’t realize the full extent of the damage done. I was emotionally crushed, but I tried to fight back the feelings.  

Ed had his own issues to deal with. Our plans were thwarted at every turn. We had a rainy Monday, activities were closed for the off-season and a landslide had taken out the only road that ran completely through the national park. In addition, we had the scary, single-lane curvy road with sheer drops that we were told was open and instead ended in a locked gate (one road closure was blamed on “sequestration”). We are still laughing about that last one. Old friends have accused Ed of carefully planning every second when it comes to activities and that one little hitch would throw him into chaos, and he admits to reacting badly to sudden changes. Our entire trip was last-minute changes.

We had a long list of waterfalls in the surrounding area that we wanted to see. Ed was encouraging as I trudged up the steep trails and steps, but his words made me feel like a 5-year-old: “You can do it!” and “We can go as slow as you need.” What I shouldn’t need is for anyone to have to prod me along. I started to get annoyed, even though I knew he was only trying to help. At one point, Ed looked over at me and said, “You don’t look tired. You look sad.” I told him what I was feeling. I was sad. Sad for everything I’d lost. Discouraged. Angry. I wanted to just sit down in the middle of the trail and cry. My pride was the only thing preventing it, barely.

But you know what? As torturous as it was at times, I never turned back. I never gave up. I reached the top of every waterfall we hiked to. I saw amazing beauty - half frozen streams, an owl, deer and wild turkeys. We took more than 2,000 photos in the course of a week, and some will end up as paintings. It didn’t matter that it took me 10 times longer than it should have. I didn’t give up, and I’m very proud of that. Ed, in turn, learned that he is more adaptable than he thought. The last-minute changes led us on adventures we would have otherwise missed, and he had no problem making adjustments on the fly. Overall, it was probably less stressful not having a firm plan. We did what we wanted when we wanted and didn't need to keep constant track of the time.

We toned it down on our last full day there. I was only up for two small waterfall hikes, but I don’t regret any of the pain and frustration. It’s just made me more determined to increase my activity level. Road blocks, whether figurative or literal, don’t have to be dead ends. We were both able to create detours and keep moving around them.

What have been the road blocks and detours in your journey?

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Comments (9) -

Staci
8:37 AM on Friday, May 31, 2013

What a wonderful story.  You managed to put into words exactly what I have been feeling for a very long time.  I too have CVID as well as PIDD, Myasthenia Gravis, Sjogren's Syndrome, Hasimoto's Thyroiditis and a host of other diagnoses related to my steroids and immunosuppressive therapy. I am only 43 years old.  I have been an RN for 17 years.  And, I am a single mom with a 6 year old daughter.  I used to be a runner and even completed a couple of triathalons before I got sick.  And, I still grieve for all that I have lost.  But, I have so much to be thankful for in my life. My daughter keeps my spirits up and motivates me to keep pushing forward through the pain, weakness and illnesses even when I feel like giving up.  And, stories like yours are such an inspiration. You are so lucky to have a husband/partner in your life that stands by your side and encourages you. The caregiver role is not an easy one for a lot of people. And it takes such strength of character to stand with someone like us because it is just too easy to walk away. Always remember that and be thankful for what you have and not what you have lost. Thank you again for your wonderful story.

joanne
9:28 AM on Friday, May 31, 2013

Thank you very much for posting this. I'm currently sick with another terrible sinus infection, and have had a horrible week between doctors wanting to do unnecessary surgery, so the worried looks on the other ones. I had a meltdown last night and sobbed with grief. I feel like I have to plan my life between illnesses, it's so isolating (who wants to be around someone who's always sick?), and I don't feel like I'm living, just getting through a tough life somedays. Other days are good but I'm going through a rough time. I've had this sinus infection for 6 months now and the pain is a constant reminder too. Thank you for being honest, I don't feel so alone now.I too have a great husband but worry about the toll my illness takes on him.

Rebecca Zook
12:18 PM on Friday, May 31, 2013

Staci & Joanne,
I can't imagine what it was like for people with rare illnesses before the internet. Not only can we find information, but we can find each other and the emotional support that we often need. Our families and friends can try to understand, but unless you've been through this yourself, you can never fully appreciate the range of emotions and physical struggles involved. I'm glad my words have helped, even if it's just a little.

debbie
1:16 PM on Friday, May 31, 2013

What a great motivational story!  My husband tries to console me when I am feeling tired and unable to keep up by saying "You are not sick, you are just getting old."  So I just keep going and I am always happier with myself when I "pushed" just a bit harder.  Listen to your body, it will tell you when to rest, and it usually has a reserve to accomplish what you want.  Remember you are just older and wiser enough to listen to your body.  

Gail
3:00 PM on Friday, May 31, 2013

What a lovely story. I, too, lament what I once was and try not to give uo. But I know when I've had enough, and if I push too much I'm useless the next day. So, I just try to pace myself.

Linda Thornrose
4:05 PM on Friday, May 31, 2013

Thanks to Rebecca and the rest of you for your encouraging words.  I have had CVID and getting IVIG for over ten years now.  I also suffer from osteoarthritis, chronic fatigue, fibromyalgia, sleep apnea, and so on.  Even after all these years, I can sure be wrong in trying to pace myself, but it is all trial and error, isn't it?  I am so grateful to all of you who share.  My husband gets so frustrated when I am 'down', but he hangs in there and tries to either ignore it or lets me alone to do what I have to in order to get through each episode.  I have so much to be grateful for.  Right now, I am just finishing an antibiotic for the 4th sinus infection since December and my throat is sore and covered with blisters again, yuk!  We are planning a vacation in two weeks for three weeks with family and some travel in CA and praying for all I am worth that I will be able to keep up.  We must just decide to enjoy the 'good' days and remind ourselves during the 'rough' days that 'this too shall pass!'  I always tell my husband, it will get better soon!  God bless all of you.

Mary
7:59 PM on Friday, May 31, 2013

It just goes to show you how we make lemonade out of lemons. What a great story of not being so rigid about schedules and how we can make the best out of any situation. Wish you the best in your new marriage.

Rebecca Zook
11:36 AM on Sunday, June 02, 2013

Thanks to all of you for your responses. I've been having a bad flare of my autoimmune conditions since Friday and getting frustrated because I had much I needed to accomplish this weekend. Trying to pace myself yet still get everything done. Your words have helped as well. :^)

Linda Thornrose
8:56 AM on Monday, June 03, 2013

Continuing to pray for you, Rebecca.  Hope you are feeling better soon and looking forward to a 'good' day or more!
Hugs,
Linda T.

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