So I haven't seen my elderly mother in person in 3.5 years. Before covid, we would see each other at least every few months, if not more often. When I last visited her, it was during Covid, but I drove to see her, which is a 16-18 hr drive (done over 2 days, which I did on my own). This was a few months before my PMR symptoms began (that time was very hard on me emotionally due to losing people close to me, as well as the extra work it took to do my job online). I really need to see her, but she doesn't want me to travel to see her if it will affect my health. I could not drive like I did in the past, but could fly, which would involve 2 flights and a total of ~8 hours from leaving my house to arriving at her door. I also can't be gone from home very long due to my husband's health, so a week at the longest.
Before the start of the pandemic, I used to be in a plane a minimum of 4 times a month, for many years for my work. The last time I was in a plane was the fall of 2019 (moved to a new city for work so didn't have to travel so much).
I have no issues with flying. I will wear a mask the whole time to try to not pick up any viruses at the 3 different airports I'll be in (for both me and my mom). I will be a bit apprehensive, but don't think I'm going to be anxious. However, it will be a bit stressful just because I haven't been in this situation in such a long time and I'm concerned about my adrenals (as I've posted about this past week, I finished taper to 4.5 mg, went up to 4.75 mg, and took 10 mg today, and will go back down to 5 mg for at least a month). I haven't set a time to visit, but most likely late in May or sometime in June. We even talked about waiting until the fall, but I know my adrenals won't be up and running by then...if I wait for them it could be a year or two or 3 or more, depending on if and when my PMR decides to go into remission.
I have lots of family in the city where my mom lives - I just really want to visit with her since I will only be there for 5 days maximum. I guess I could tell family members that I could go for a walk with them (I do walk twice a day now, but would either only walk once a day while visiting or do two shorter walks) for a visit, but I know that seeing family will be stressful - both in good and bad ways! I'm thinking of preparing everyone with info about PMR and the adrenals. Most will understand, but some will have their noses out of joint! I just wish I could sneak into town, spend time with my mother, and then sneak out!
Someone suggested that I take an Ativan for the travel, but I don't think it's anxiety I need to worry about...I just need to be aware of stress, try to stay calm and relaxed, and take extra Prednisone.
I guess I just wanted to get advice about travelling to an elderly parent (in late 80s) who is doing well, but also can't chance catching any viruses (she has been very careful about masking, getting her boosters, etc.)
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LucilleG
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And breathe! 🙂. What you are saying hasn’t happened yet and may well not do. Your mind is already having you in a heap having an adrenal crisis with a family bust up (or whatever, happens with the difficult ones) and your mum with a virus you’ve brought in. There’s nothing like worry to drive up the need for cortisol. Yes, there are concerns and you can do things to try to make it go smoothly. I would break it all down from the moment you leave the door instead of thinking it as whole 8 hours and see if there is anything to make each section easier. For example can you be driven to the airport? Can you use an assistance service at the airport? I had myself being wheeled by staff even though I wasn’t disabled and feeling a bit of a fraud but I knew I had to preserve my energy when my adrenal function was low. Think of things that you might enjoy about the trip. I know it’s hard when one has lost confidence but you will probably do better than you think.
I would definitely let the family know as you suggest and request that others keep an open mind as to your stamina. I have found that things are better than what one’s imagination comes up with. Make sure you rest if you need and don’t keep going to keep others happy. As for others having their nose put out of joint, I hazard a guess that you could do that without trying very hard and perhaps it’s a no win situation whatever you do. You could just say that you don’t feel up to the family en mass so you’d like to just see your mum; would that stop the world turning?
I wouldn’t take anything for anxiety if it were me because I would feel less in control of a situation if I’m out ‘in the wild’. Depending on your dose on travel you could take an extra mg or 2 if you are really worried but I wouldn’t do 10mg. I’d be worried that I’d over do it with the extra dose level giving me a false boost. What evidence do you have that your adrenals are not up to it? Is daily life struggle adrenally already?
So, break it down, plan, be firm with your needs, leave others to their dissatisfaction, have some faith in yourself and think about what you will enjoy more than what might go wrong but hasn’t happened. 💐
Thanks for your reply! I think I'm preparing for the worst, hoping for the best. I've read here where people have travelled and overdone it and I want to be cautious. Good stress has been brought up often about visiting with friends and family and overdoing it. Maybe I've been reading too much about other people's situations around travelling and trying to do things like they used to pre-PMR.
I hope I don't bring my mom a virus - I'm just going to continue doing what I've been doing since the beginning of the pandemic and wear a mask when out and about, especially at busy airports.
Your advice about breaking up the travel time is a good one. I won't have to do much walking at each airport as the connections should be in the same area.
When I started a taper from 6 mg to 5.5 mg back in early January, I was very dizzy and nauseous. I think this was the beginning of my adrenals being poked away. Since then, no dizziness and nausea, but very very tired. In the past, travelling to my hometown would have been nothing. And in fact, if not for what I've read here, I would have probably tried to drive home, which is actually more like a 20 hr trip one-way, as there is also a ferry trip involved.
I agree with you about wanting to be in control. I've never taken anything for anxiety or depression, and I don't think travelling alone is a good time to start.
I think I'll just take my 5 mg of Prednisone and if I need more, I'll take it.
"I won't have to do much walking at each airport as the connections should be in the same area"
That may be the theory - but all it needs is a delay and you are faced with rushing. Or standing in a queue, that is what finished me. I believed the check in agent at Seoul airport - she was right, it was 50m to the security gate, 100m the other side to the departure gate and I had a priority card. But the priority line was as long as the other one! Everyone with kids, disabled, crew, first and business class went through it - I had to stand and wait, When I got to the departure gate - nowhere to sit, far more people than seats and all occupied. So I played the priority card and we were taken to another level, loads of seats and, above all, quiet. ALWAYS request assistance, you may need it.
So true about delays! I will definitely request assistance just in case I need it. I'm now looking at flights - it's very exciting! There will be lots to plan for in terms of leaving my husband (due to a medical condition), but as long as it's less than a week, all will be fine.
You can lower any viral load you may pick up, as well as reduce risk of catching anything in the first place, by wearing a well-fitted respirator, which you do NOT remove for any reason. Hear too many stories of ppl coming down with covid who just removed mask for a couple of minutes in the washroom for example. You feel safe there, but it's probably the riskiest spot on a plane. Also have travel supply of cetylpyridinium chlorine mouthwash and an anti-viral nasal spray, like one containing iota-carrageenan.
I gather your journey is long enough that you'll need to eat and hydrate, and I understand that when the air system is running air on planes is relatively clean. But don't keep the mask off any longer than you need to! And use the mouthwash at journey's end.
Have a safe trip and a good visit with your mother.
Thank you so much for this information! I will be buying some cetylpyridium chlorine mouthwash and an anti-viral nasal spray before my trip!
I've started looking at flights and I don't think I'll need to eat or hydrate on either of the planes. I will be able to have a small snack and a beverage before boarding the 2nd flight as it's a smaller plane and they board outside. The first flight is 30 min, the 2nd 1.5 hrs.
Since being on prednisone and while being off work for the past year or so, I've seem to eat mainly in the morning (starting at 5ish when taking my pred) until the early afternoon, then I'm not so hungry anymore. It's weird, because I used to be a snacker and would eat small meals over the whole day. Now I eat small meals, but at least 3 before noon! Both trips (going and return) are later in the afternoon, which will work out well for me.
Once again, thank you! I do want to be vigilant about keeping my mask on. No need picking up a virus at this stage, and like you said, keeping the viral load low is key, with all of the viruses floating around.
For boarding the plane, don't you need to remove your mask when showing your ID and boarding pass? I can see myself holding my breath for those few seconds!
yes you will need to remove your mask at boarding but for a couple of seconds. I’ve travelled from UK to US twice recently, so long flights.. Don’t forget hand sanitisers. . I used nasal spray, I used FFP3 mask by 3M while waiting & onboard all the way on flight, Clenill wipes to wipe tray table and armrests, hand sanitiser before eating, chewed with mask on, used mouthwash as soon as coming off the plane, and tested before visiting my parents and first couple of days there. I am in high risk group and so is my mum who I was visiting - not taking any chances!!! I also don’t care what others do or think, it’s my family I have to protect.
Thank you! Yes, I'll be certain to be well prepared. I also have a portable air purifier that I'll bring with me. I'll be staying with my mom (I've purchased 3 air purifiers for my mom - 2 portable and a larger one - which she has started using) and I told her that we should mask up for the first day at least. I will definitely take a covid test asap. Her place is in a high building with lots of windows and two patio doors going out onto a big balcony, so we will have lots of air flow.
I think I was waiting until my adrenals have started producing cortisol, but they may not be fully stable for another year or two or more, so I can't wait any longer. She is doing well, but does have health issues, so I don't want to be rushing to see her only when she is not doing well. If this trip works out, I'll probably go there again in the fall, and maybe every few months going forward.
Btw I misspelled the chemical in the mouthwash: Cetylpyridinium Chloride. I found the mouthwash relatively easy to come by, but had to order iota-carrageenan nasal spray online as all the local pharmacies were "short"! There is a nasal spray called Enovid or Sanotize which uses nitric oxide I believe. Developed in Canada but not approved here, and manufactured in Israel. Expensive. As it's something used in treating heart conditions I think there's some wariness in giving it wholehearted approval.
I have this amazing seat - really helps in travel. Bought at local mobility shop many years ago. Linden leisure .com 01242604545. When a screw came off some yrs ago they sent replacements re. Is light and compact. Could have sold it so many times!
Steel with firm webbing seat. Light and easy to use! Had for 10 yrs.
I did my first lot of flying in three years a couple of months ago (UK to Australia and back, with a few nights in Singapore). This obviously was much further than you are going. However, I, too, had big concerns about my PMR, which was diagnosed over five years ago. I am currently on a low dose.
I had masks with me but I did not wear them. I also carried a box of Covid tests. I just tried to keep my distance a bit from people in all the queues. (A mask is more likely to protect other people than you).
I also ensured a took a lot of Pred with me, much more than I needed, just in case I experienced a bad flare - or even a diagnosis of GCA in Australia. . I was conscious what flying might do to my blood but I needn’t have worried. I even seemed to get the daily dose of Pred right with changing time zones. But I did get incredibly tired after each flight. I needed a day sleeping after each one. Things turned out ok - I needn’t have done so much worrying.
EVERYONE IS DIFFERENT and we all have ways of dealing with possible problems when travelling but do go and see your Mum. 🙂
Thank you for this! Yes, I do need to go and see her. She’s been the one that has been more concerned about my health than me - worried I’ll get covid or get overtired travelling. But like I told her yesterday, it would be better to go see her now and enjoy our time together, rather than waiting until something happens to her.
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