Why I’m nervous about traveling with Cushing’s disease
The only way I can do it is by being flexible and preparing traveling companions
I love to travel. Seeing new places is inspiring, and getting a much-needed break from the city is refreshing. However, traveling is different for me now that I have Cushing’s disease.
In the past, I could jump on a plane and go anywhere without a thought in the world. That’s no longer the case. I feel more comfortable now if I’m in complete control of a trip. I can find and call places ahead of time that are appropriate and safe for people with chronic illnesses. I can determine if doctor’s offices and hospitals are nearby. And I can even plan my day around my complicated medication schedule.
Of course, it’s unreasonable to assume I can plan every detail of every trip I go on, especially if other people are involved. I struggle with wanting to appear flexible while also recognizing that there are certain challenges to having Cushing’s disease that I can’t ignore.
Given all of this, the following are five reasons I get nervous when I travel with my healthy friends and family members:
1. I simply can’t do various activities
It’s awkward to have to explain to people that I’m not capable of doing certain activities. Sure, I’d love to go on a hike to see the lake, but only if it’s a flat path, I can take my wheelchair and cane, and there’s an easy escape if I need it. Due to this, I tend to sit out of most activities so that I don’t diminish other people’s experiences.
If my companions are interested in a last-minute activity, I have to check about a hundred things before I can commit to it. Can I be accommodated? Are there safe foods I can eat? Does it require a lot of walking? Will I be allowed to bring all of my medical equipment with me?
Spontaneity is great, but it’s nearly impossible for someone like me.
2. My stamina changes every day
As much as I’d love to promise that I’ll be able to do several activities and jump around from place to place, I can’t. My stamina isn’t consistent and changes every day. Yesterday, for example, I woke up to my entire body being in pain. I was able to eat get out of bed for my morning meds and then curled up on the couch. I took three naps, scarfed down some zucchini, and then lay down again because a migraine overwhelmed me. Days like this are unexpected and can happen at any time, and they really sour a fully planned day.
3. My life revolves around my medication
I recently had to start taking even more medication than I previously did, and unfortunately, it’s all time-sensitive. I take my first set of medications when I wake up in the morning. Three other medications must be taken with food throughout the day. My nighttime medication starts exactly at 8 p.m., and then I must take more at 10 p.m. Finally, before I go to bed, I must to take my last medication with a glass of water. That one exhausts me, so I tend to climb in bed immediately afterward.
I have ways to manage all of this: I bring my medication with me, I have alarms, and I am on top of it. But no matter what happens, I must stop to take my medication six times a day.
4. Not everywhere works with my mobility devices
Depending on the day and the severity of my symptoms, I use a wheelchair and a cane. If we’re going somewhere that has stairs or isn’t wheelchair accessible, it’s difficult for me to access. Some places claim to be accessible but aren’t. I’ve been to restaurants where I can enter just fine but the bathroom is located downstairs. So before going anywhere, I usually have to make several calls and ask questions. Even then the location might not be able to accommodate me.
5. Emergency situations require preparation
Because my cortisol levels are high, I’m currently taking ketoconazole. Because of this, it’s always possible for my body to lower my cortisol levels too much and send me into a crisis. If that happens, I need emergency medications to be administered.
I have a sheet in my bag at all times with information about how to administer them, but it’s very stressful to have to try to get someone’s attention and hand them the sheet during an emergency. Therefore, I’m much more comfortable traveling with someone who has been trained to handle this.
I love to travel, and I do want to take risks and have adventures with the people I love. However, I think it’s easy for people who aren’t in my position to forget all it takes for me to be able to do what they do.
What are your thoughts about traveling? Please share in the comments below. You can also follow my journey on TikTok and YouTube.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
About the Author
Chrissie
Hi, I had Cushing’s syndrome, a nightmare. I had a tumour on my adrenal gland both were removed which stopped Cushings, but now because my remaining gland is asleep I don’t make any cortisol naturally so depend on 6 hourly meds to stay alive. Hydrocortisone. With emergency injection shoukd I go into crisis because my cortisol levels drop too low. I too am treeified of where I eat now because if food makes me sick, if I can’t keep down pills I have to self inject then call ambulance to go into hospital on I’ve for 48 hours. I’m now classed as adrenal insufficiency Addisons. Swapped one rare condition for another. As you say it makes travelling even days out a worry. I wear a med alert wristband and also an alarm set for med times as these must be exact times, and never missed. You say yours is Cushings desease , so a tumour on the pituitary gland? Or is it from use of steroids? Are you not waiting for surgery of somekind to cure the Cushings? Removing the tumour? You won’t be left with Cushings surely? But it’s even worse being steroid dependant after surgery, because anlthough the cruel symptoms mostly go, you tyen have to adjust to a drastic change of life. I understood that adrenal crisis occurs when your cortisol levels drop, or like me now, when you don’t produce any cortisol at all, I never heard that an adrenal crisis was ever caused from overproducing cortisol. Im a bit confused confused,as I was overproducing extremely high levels of cortisol from the active tumour, apparently having had it for years before being diagnosed with Cushings Syndrome, never risked a crisis but severe symptoms . It was while I was having scans checking for anaemia looking at organs they found a tumour on my left adrenal gland which was responsible for the horrendous symptoms I was having,. I’ve never heard of anyone being left with Cushings…. Surgery to remove the tumour, or if it’s by steroids then reducing the steroids, will end Cushings, both decease and syndrome. I hate the med alarms but worse is living with sick day rules, adjusting the hydrocortisone dose according to situations or being poorly, in shock, on antibiotics seeing the dentist and so on, even taking a flight…. As we can’t check out cortisol levels like those with diabetes can. Either way, Cushings is cruel, and whike you’re waiting for sure grey or post surgery…. Life will never be normal again.
Lucie
Hi Chrissie, ( girls name🤗)
Took 18yrs for my Cushing's to b found - for me to b believed, body to fix etc .. had surgery thru nose & 4 mths later laser treatment. C gone yes 5% left is behaving after 9yrs. Jus all this excess skin, rollies round bum etc won't operate to get my poor front body to stop stoopg with excess frt weight. Lost 36kg (6st) got another 28kg (4st) to loose b4 bk to 2000 weight. hmm prob won't make another 8yrs - yea am 70yrs.
Good luck with your health/body/life changes 🤗💁