I’m No Globe-trotter
Overall, as most of you know, I have been doing really well. I follow the IF diet (anti-inflammatory diet. the app I use is IF tracker), I get enough sleep, keep my stress low and exercise, doing zumba, spin class or hot yoga. My husband travels occasionally for business. I usually don’t go because the turn around time when he leaves overseas is too quick (3 days in Thailand from Arizona, I don’t think so for my body! I would just get acclimated when I would have a17 hour plane ride back home, no sir!) So I usually stay here.
2 weeks ago he asked if I would like to accompany him to Spain for a 7 day business trip and then go to Morocco for 3 days (!) I said “YES” Now this pace of being able to rest for many days after flying seemed great! He asked me to please pace myself during walking through the city while he was in meetings. I replied, ” Well of course I will!!!! Im not going to over do it!!!!!” He gave me that look like, most husbands do when they have been married to somebody for years, of “I know you, and I bet you will over do it”
Well, Spain was beautiful and I couldn’t wait to get up and investigate the city from morning until late afternoon everyday!!! I walked, and walked, and walked, and walked, and took a zillion photos, and investigated boutiques, and browsed curio shops and pastry shops (!). The first 5 days went fine, I never walk so many miles each day back home, but I felt SO energized!The hotel didnt have almond milk, soy milk or rice milk, so I drank milk with my coffee, ate yogurt, ate toast, ate cheese and crackers and spanish olives and hand made pasta for lunch. I thought “hey! I’m doing great without that darn anti-inflammatory diet! I DON’T need it anymore!! Spain is good for me!!”
During the evenings I was becoming tired. I usually accompanied my husband at his business dinners. But I was getting very fatigued by the 5th day. And on the 6th day I did not accompany him to his business dinner. He begged me to rest that evening, I did. I slept 13 hourts. The next day we flew to Casablanca, Morocco.
I felt a little less energy, fatigued. My husband begged me to rest, to not walk through the city like a mad woman for hours on end, and please sleep more. But my hard-head didn’t listen to my body or his gentle pleading advise. He knows me very well. Morocco is a fascinating place to visit!!! The food is spectacular if you enjoy moroccan lamb stews, lamb tangine, chicken stewed with interesting spices, moroccan pastries (yum!)
By the last day to fly home, the evening before, I had shaking chills and a fever. I had overdone it. And now I had an 18 hour flight home with several cities to change and layover. We could not fly direct due to the way his business flight was arranged, so I had to fly the way he did. This flight home was so painful.
I had teeth chattering on the flight home, sweating and was so extremely tired that my body ached. Sitting in the plane, cold and damp with sweat and the air-conditioning so cold was so painful I can not explain the depth of my discomfort. We finally made it home. I had a rash that covered my neck and chest. I went directly to bed and I slept 15 hours.
But it has been almost a week home and I still do not feel well. Last night before I fell asleep, the chills came on, this I know will lead to a drenching sweat later, and it did, four hours later. My hair soaked, sheets soaked, bones aching, rash on my chest. I have started the anti-inflammatory diet as strict as a monk in training. No cheating, not even a desire to eat anything that will inflame me. I have 2 more days before I return to work. I need to get my body back on track.
I am not the world traveller my husband is. But I am so thankful that he is understanding and does his best to keep the best intentions for me when I try and run around the way I used to before I got this stupid disease. I will be fine. I will be back to my energetic self in a couple weeks. Zumba will be there, hot yoga will not go away and my boss at work is extremely understanding of my fatigue level.
I think I will keep my travel within the USA. Overseas travel is too hard on my body. I wish I had the endurance to globe-trot. But there are so many beautiful places to see right here in my own country. Theres no place like home.
Stay healthy my friends. Here’s wishing you good health.
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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
Adult Onset Stills Disease 
I have so appreciated the reminders each of you have given on the need for balance and rest. I too have had them said by physicians and family/friends alike. As I gain strength and see I can do more, I keep thinking I can get back to my former activity level and find I wear out. I have only recently been practicing (and not always well) that if I have a busy day or two, I need to have a quiet day or two. Just as you all have commented, we need to do this for ourselves AND for our families and those others we might care for. I am still getting frequent labs to check that inflammatory markers are good. I find it really difficult when my labs looks good to not really overdo–thinking I am cured, rather than the Stills is still for now.
How blessed I am to have found this blog and have the support and reminders from you all. YES, we are not in this alone.
I can relate! I was actually just in Portugal and Morocco myself. Traveling, especially internationally, is my favorite thing in the world, and I refuse to let my disease get in the way of it. For me, that means forcing myself to make time for daily naps, scheduling a rest day in the middle of my trip, and not being upset with myself if I don’t get to everything I’d hoped to see. My new adapted traveling philosophy is that if my day included some fun things (even if not all the fun things), then it was a good day and a good trip. I also try to rent apartments instead of staying in hotels as much as possible (depending on the location, of course) because it gives me the option of preparing my own food. And you are absolutely right — there is so much to see in this country if international travel seems like too much for your health right now. And don’t forget Canada… it’s an easy trip, and Vancouver especially is one of my favorite places.
Thank you SO much for your reply! Sometimes I need to hear it from others with Stills to slow down. Your post inspired me. It made me think and re-evaluate my days. Sometimes, advice like “slow down” is so simple, but so hard to do.
I have a scheduled nap almost every day–my husband asks me EVERY day if I got a nap (: I stay pretty busy the first half of the day but never have plans after 12 noon. I rest and take a nap before the 4 children start coming home from school and then it is back to crazy running around. By 6 p.m. I am usually exhausted again. Resting and reducing stress has been preached to me by doctor and family for the last 7 years. As we each say–there seems like there is so much to do and I hate to sit by when I could be accomplishing something. It is not in my personality to sit idly so it has been difficult to really make it apart of my daily routine. The benefits are worth it!! My family needs me and when I take care of myself I can enjoy my family more. Plus they don’t have to worry about me–they worry when I start to have trouble walking and have chills where I can’t get warm. I rest and take a nap each day for myself and for my husband and children (:
Jennie, we are fortunate to have caring spouses! I really need to listen to that internal voice that says slow down, take a breather, rest, etc. I know it. But that other voice, sometimes yells louder “just one more task, you can do it!!” UGH! But hearing from you and the other reply, really sank in. For some reason, it started to make more sense. I guess, it’s the power of knowing, I’m not in this alone. Thank you for being there to be a sounding board with good sense. Don’t hesitate to let me hear loud and clear to practice what I preach.Stay healthy my friend.
I so appreciate your sharing. This is so helpful for someone like myself that was only diagnosed February 2013. Unfortunately, I was almost simultaneously diagnosed with an rare adrenaline secreting tumor, pheochromocytoma, and had to have an adrenalectomy May 2013–while continuing on prednisone. Recovery is slow, but learning to pace myself, keep stress under control and resting are the key and difficult lessons to learn. I too am in healthcare and fear the cold and flu season.
My husband and I recently went on vacation for the first time since diagnoses and I was terrified. I did well and as with you, my husband admonished me several times to slow down and accommodated with rest periods.
I pray that you feel better soon. And bless you for your sharing….
Thank you Patty for your kindness. You do have an additional factor of the adrenaline secreting tumor along with the AOSD. Do you have energy to make it through your day? I am not sure how the adrenaline secreting tumor makes a body feel, but I imagine your energy levels are effected. I am so happy you have a supportive spouse especially with a career in the health field where we give and give of ourselves, it is nice to know that you have comfort and a nice husband who understands. Wishing you best health and peacefulness
The adrenaline secreting tumor usually manifests itself with volatile blood pressure, sweating, headache, racing pulse and feelings of anxiety. I really don’t know how long I had had it, but may have become more active when I had my flare and they put me on such high doses of steroids to control the Stills flare. It was an act of God that the pheochromcytoma (adrenaline secreting tumor) was discovered. I was blessed that it was confined to the right adrenal gland and surgery was successful to remove the adrenal gland and the pheo–with no mishaps–this past May. I was 3 months post flare and still on steroids which was good in many ways. I healed from the surgery, but am now fighting some adrenal insufficiency d/t the steroids, loss of the pheo and loss of the gland itself. I think overall I am doing well and am on 2.5 mg of prednisone and the inflammatory markers have been ‘still’.
So, as far as fatigue–the pheo probably made me the energizer bunny, and I could go and go and go. Now that it is gone, I really don’t know what is normal and what is post-flare and adrenal insufficiency. Overall, I am much better than I was 2 months ago with energy and stamina. I am anxious to see if I can get off the steroids completely and continue.
I have not returned to work since the flare in February. My primary care wants to continue to wait and see, since I was so ill with the flare. This is frustrating to me, but I am trying to respect his advice. How did your physicians decide you could return to work? Do you work full-time? This is such unchartered territory for me and my primary care. I see the rheumatologist next month, too and will seek his insight, too.
I pray that you continue to do well. I wish I could help with your “weird episode” but I do find that I feel some of the feelings you described off and on–so maybe not related to the methotrexate?
Take care and again thank you for your blog
Patty
I would have done the same thing you did on a great trip like that! My husband would have said the same thing your husband did and I still would have gone out and walked all over and explored! And I would have felt the same in the end. It is so hard to not go, go, go when all seems to be going well–especially with the temptations of beautiful cities to explore! I do hope you feel better soon!
Thank for your kind words Jennie. I am starting to feel better. I was going to ask you about the hour your rash comes on. When I do get the rash it ALWAYS comes on at 7pm on the dot.Usually there are 1 or 2 spots appearing but by 7pm, WHAMO! Rash to the max :-0 ! Today rash is very very faint. Im on the mend!!
My rash right now is not as predictable as yours–I usually notice it when I am getting ready for bed at night. In the early stages of the disease, I knew I had until 3 p.m. to get stuff done and then after that I went down hill quickly with chills, fever and rash. Thank goodness that is not the case anymore (: