I'm so depressed. I thought I was doing better and decided to take the opportunity to go on vacation with a group of friends. I never made it to dinner, too fatigued and the last day I slept about 18 hours - literally woke up for a few hours, packed my suitcase and slept another 10 hours. I was worried about having the strength to pack my suitcase, get to the airport and fly home with one layover. I did make it home and then slept another 16 hours.
I'm so depressed. I don't think I can ever go on a vacation again. It's too risky. And I'm single, so I have no one to help me if I'm having a bad day while I'm on vacation.
From your posts it seems you have been struggling for a while now with this fatigue and depression. I by no mean can make a judgement or an assessment but will try an observation. I don't know that much about your situation but seems like fatigue has been a huge part for you lately, is there a possibility that your fatigue can be causing your depression and vise versa, your depression prolonging your fatigue? Does it have to be PsA related? Maybe its worth having a talk with your doctor and hopefully he/she can get you on the road to feeling better. Wishing you all the best
Thanks Sybil. I was analyzing my vacation and I think I should have gone to bed early every night instead of trying to stay out with my friends. I did rest in bed every night at dinner time, but didn't sleep. I wonder if I had just stayed in for the night and slept in if I would have felt better???
Sybil, you always welcome to visit me in the U.S. - I live about 20 min from Washington, DC and can show you the sights - of course it will have to be during the day before my PsA bed time :-)
sybil said:
Oh Frances, what a bummer. I'd be fed up too. But you tried, that says something. How about less taxing vacations - ones with opportunities for lots of sleep built in? Have you got any friends who are quite happy to do their own thing if needs be but just like the idea of having someone to plan & share the vacation with? Better to have a sleepy friend along perhaps than to go alone.
Dammit, if I was in the US I'd go on holiday with you. Anytime you think you can face a trip to the UK give me a shout & stay with us - we'd have a laugh or see the sights of Shropshire (sheep, mainly, but some gorgeous hills) whenever you felt up to it. Don't give up - the next time might well be completely different.
Thanks for your reply Easternlady. Yes, fatigue has been a major problem for me from the start of my PsA. I take Plaquenil and vitamins to help. I also take Cymbalta to help with pain and to avoid the onset of depression. I do get very depressed after an "episode" like my vacation and I think that causes me to sleep more. Also, PsA and other inflammatory diseases can cause depression. I don't know if you read the thread on that. You made me think about it the connection more and I'm going to talk to my doc and see if I should/can increase my Cymbalta dose during times like this or take some other med.
Thanks again for taking the time to respond. It does make me feel better to talk to people who understand.
Easternlady said:
From your posts it seems you have been struggling for a while now with this fatigue and depression. I by no mean can make a judgement or an assessment but will try an observation. I don't know that much about your situation but seems like fatigue has been a huge part for you lately, is there a possibility that your fatigue can be causing your depression and vise versa, your depression prolonging your fatigue? Does it have to be PsA related? Maybe its worth having a talk with your doctor and hopefully he/she can get you on the road to feeling better. Wishing you all the best
Wow - Morroco ! Great ! What I learned from trip if it helps you at all is: 1) have a plan to accommodate my fatigue or whatever my issue is 2) have a realistic expectation for my vacation so I'm not disappointed 3) have a back up plan.
Enjoy your trip ! And let us know how it was when you return.
Frances
sybil said:
It's all a learning process I guess, learning how to 'do' vacations differently as well as lots of other things. I might just take you up on your offer! Easternlady's right - your doc should be on the case regarding your fatigue / depression, hope something can be done to break the cycle.
I'm off to Morocco next week and am apprehensive - fatigue's not a big issue for me just now but it's still a bit daunting. I'm trying to banish fears of being a killjoy & determined to enjoy myself on my own terms.
Frances said:
Thanks Sybil. I was analyzing my vacation and I think I should have gone to bed early every night instead of trying to stay out with my friends. I did rest in bed every night at dinner time, but didn't sleep. I wonder if I had just stayed in for the night and slept in if I would have felt better???
Sybil, you always welcome to visit me in the U.S. - I live about 20 min from Washington, DC and can show you the sights - of course it will have to be during the day before my PsA bed time :-)
Oh, Frances. I can really sympathize. I stress over every single “event” that I have planned. Vacations are the scariest because they require so much planning and disrupt your normal schedule - plus you feel some pressure to go along with the gang. I finally just gave in and started staying behind for some things. I tell everyone to take lots of pictures and send me texts and pictures - then I put my phone on silent and snooze. I pick and choose what I can do and and can’t but I still feel completely crappy ab the stuff I miss out on. It sucks. But at least I can do some of the stuff. Sybill and Easternlady are right; don’t give up! I am starting to thing PsA is like a new life where you have to relearn how to do everything a new way. Every time I think I have figured this out I have an emotional breakdown because there is a new thing I realize is lost to me. But then I try to figure a way around it. Depression is a biggie. I’m glad you have a group of friends who you can do things with! I feel more and more cut of from my friends because I don’t feel like going out and I don’t work anymore. I miss my daily connection with my teacher friends but I know I couldn’t do that job anymore. Friends are such a blessing! You are so lucky to live near such a cool place! I live near Charleston.
Thanks for your reply Tigergirl. It really does help me to talk to people in this forum who understand. I was so upset, when I got home, I was crying. It's the first vacation I've taken since being diagnosed. I realize now that I need to plan better to get more sleep and do what you said, not attend all the activities/events.
Charleston is a great place to live ! You're already on vacation ! :-)
Frances
TigerGirl said:
Oh, Frances. I can really sympathize. I stress over every single "event" that I have planned. Vacations are the scariest because they require so much planning and disrupt your normal schedule - plus you feel some pressure to go along with the gang. I finally just gave in and started staying behind for some things. I tell everyone to take lots of pictures and send me texts and pictures - then I put my phone on silent and snooze. I pick and choose what I can do and and can't but I still feel completely crappy ab the stuff I miss out on. It sucks. But at least I can do some of the stuff. Sybill and Easternlady are right; don't give up! I am starting to thing PsA is like a new life where you have to relearn how to do everything a new way. Every time I think I have figured this out I have an emotional breakdown because there is a new thing I realize is lost to me. But then I try to figure a way around it. Depression is a biggie. I'm glad you have a group of friends who you can do things with! I feel more and more cut of from my friends because I don't feel like going out and I don't work anymore. I miss my daily connection with my teacher friends but I know I couldn't do that job anymore. Friends are such a blessing! You are so lucky to live near such a cool place! I live near Charleston.
I am so very sorry Frances. I flare every time I vacation and have the opposite problem: I can't sleep. So my vacation becomes walking around in a haze of fatigue and pain with my brain pretty much offline. As a result, I rarely vacation. A solution I've come up with is I pay half the ticket for my long distance friends and have them come to ME. Yes, I get tired hosting guests and doing touristy things, but it helps to have all my comfort stuff in my own house. I would much rather travel and see new places with my friends, but the past 15 years of attempting to vacation has really driven it home that for ME, it's not worth it.
As others said, it seems like your fatigue and depression has been going on for awhile. When I get like you're describing, it usually means I need to switch to another antidepressant (if I've already increased the dose and it doesn't help much). Also, your deep fatigue may be depression and / or PsA related. Have your iron levels checked first, that's a simple solution if that's the problem. Then think about your sleep, is it possible you have sleep apnea? Maybe see a sleep specialist? Your PsA treatment may need to be changed too.
I'm just throwing out all the ideas I can, hoping one makes sense to you. I'm really so sorry your vacation was a bust. Hugs if you'd like them.
Thanks for replying Marietta. It really helps to talk to people who understand. I've had my iron levels checked, went to a sleep clinic and my doc checked everything else that could possibly make me fatigued. My rheumy said it's just the PsA and for some reason it's worse for me than others. I take supplements and try to eat well.
I have another vacation scheduled for March 23-29th to North Carolina. I bid on a vacation home at an Arthritis Foundation fundraising event. I'm not concerned about this trip because I'll be driving and going with friends and family. I also don't have the stress of dealing with the airport and luggage. My sister is going and she has Lupus and my Mother - they both understand I may need some down time. And I'm not planning any excursions and won't feel any pressure to keep up with anyone do any activities.
Marietta said:
I am so very sorry Frances. I flare every time I vacation and have the opposite problem: I can't sleep. So my vacation becomes walking around in a haze of fatigue and pain with my brain pretty much offline. As a result, I rarely vacation. A solution I've come up with is I pay half the ticket for my long distance friends and have them come to ME. Yes, I get tired hosting guests and doing touristy things, but it helps to have all my comfort stuff in my own house. I would much rather travel and see new places with my friends, but the past 15 years of attempting to vacation has really driven it home that for ME, it's not worth it.
As others said, it seems like your fatigue and depression has been going on for awhile. When I get like you're describing, it usually means I need to switch to another antidepressant (if I've already increased the dose and it doesn't help much). Also, your deep fatigue may be depression and / or PsA related. Have your iron levels checked first, that's a simple solution if that's the problem. Then think about your sleep, is it possible you have sleep apnea? Maybe see a sleep specialist? Your PsA treatment may need to be changed too.
I'm just throwing out all the ideas I can, hoping one makes sense to you. I'm really so sorry your vacation was a bust. Hugs if you'd like them.
Kudos to you for going on Vacation Frances and even better listening to your body and resting when you needed! I missed our ladies annual ski trip last weekend because I now have a fear of going anywhere for too long due to this disease and I always tend to push myself and pay later. We did go over to the big Island ,spent the night with my mother in law and the next day we went on a 3k snowshoeing adventure through the beautiful alpine meadows. Prior to our adventure I was having some usual daily aches and pain, so took a celebrex. Anyway the day after we got home I started having a fairly intense flare in my foot...now on day 5 and had to get some prednisone yesterday to get it down.
It's hard to know what we can and can't do with this disease, but sometimes we just have to do it! I'm sorry that you feel down, but you took a huge step in making the commitment to go :-) I'm sure your friends understand, I'm sure there were some good moments. Sometimes just getting out is worth it...the memories we make :-) Take care and be good to yourself!!
Thanks TaraLynn. And you are right, I did have some good days with good memories. I will focus on that.
TaraLynn said:
Kudos to you for going on Vacation Frances and even better listening to your body and resting when you needed! I missed our ladies annual ski trip last weekend because I now have a fear of going anywhere for too long due to this disease and I always tend to push myself and pay later. We did go over to the big Island ,spent the night with my mother in law and the next day we went on a 3k snowshoeing adventure through the beautiful alpine meadows. Prior to our adventure I was having some usual daily aches and pain, so took a celebrex. Anyway the day after we got home I started having a fairly intense flare in my foot...now on day 5 and had to get some prednisone yesterday to get it down.
It's hard to know what we can and can't do with this disease, but sometimes we just have to do it! I'm sorry that you feel down, but you took a huge step in making the commitment to go :-) I'm sure your friends understand, I'm sure there were some good moments. Sometimes just getting out is worth it...the memories we make :-) Take care and be good to yourself!!
I wish I lived in Charleston! I live an hour an a half away. We make day trips or romantic getaways. We have been saying how we wanted to see Washington so I am jealous of you. It’s so discouraging when you see everyone living it up and being the way you want to be - the old you. It like a slap in the face reminder when you were able to push it under the rug for awhile. It’s probably worse when it’s friends and not family. At least family sees your pain daily and is really careful of your feelings. I wonder if you could explain to them how you felt? Maybe invite them, it not all just your bff’s to a girls night out at a fave restaurant and tell them about PsA. Most people don’t know that much about the real dirt on how crappy it makes you feel and how it affects the inner workings of your body. I mean don’t make it a lecture but maybe give them a handout. I did that for my parents and it made a pretty big difference. It won’t change how you feel but might change how they react to how you feel. Also, when we are on vacation sometimes I have to go do stuff in the morning and then go back and take a long nap before dinner and then maybe go do something after. I’m just glad you went at all! That is Half the battle. Now you will adjust your game plan
Thanks Tiger Girl. I like your idea of taking an afternoon nap. On this trip, there were 12 people and I knew 3 people. Everyone was great fun, but I didn't feel comfortable explaining PsA to the whole group, but did send an e-mail to the trip organizer explaining the my PsA may cause me to get tired and I may not be able to participate in all the activities. But I was embarrassed the last day when I slept the entire day. I think it would have been better to just mention a little bit about it to the group. I'm not sure, but if I will think about what to say if I ever go on a group vacation again.
If you ever visit Washington, let me know so I can show you around !
Frances
TigerGirl said:
I wish I lived in Charleston! I live an hour an a half away. We make day trips or romantic getaways. We have been saying how we wanted to see Washington so I am jealous of you. It's so discouraging when you see everyone living it up and being the way you want to be - the old you. It like a slap in the face reminder when you were able to push it under the rug for awhile. It's probably worse when it's friends and not family. At least family sees your pain daily and is really careful of your feelings. I wonder if you could explain to them how you felt? Maybe invite them, it not all just your bff's to a girls night out at a fave restaurant and tell them about PsA. Most people don't know that much about the real dirt on how crappy it makes you feel and how it affects the inner workings of your body. I mean don't make it a lecture but maybe give them a handout. I did that for my parents and it made a pretty big difference. It won't change how you feel but might change how they react to how you feel. Also, when we are on vacation sometimes I have to go do stuff in the morning and then go back and take a long nap before dinner and then maybe go do something after. I'm just glad you went at all! That is Half the battle. Now you will adjust your game plan :-)
I would love to get together! Nothing would be better than a tour guide that had to rest as much as me haha. It’s funny how we are embarrassed by our limitations. My friend wanted me to get a wheelchair for a long day of walking one time because my ankles were extremely swollen and given the choice bt not going at all or going in a wheelchair I chose not going- or actually hobbling along, I believe. She totally loves me to death and only had my best interest at heart. I never think less of anyone in a wheelchair but I can’t see myself using one. Pride… On the way home I was nearly in tears from pain and suffered for days. You and I have nothing to be ashamed of. That same friend told me later- You didn’t ask to be in the PsA club. It’s true. It’s not our fault we just have to cope the best we can. Thank God for good friends.
You wouldn't want to visit now - it's sooo cold. The best time is in the Spring or Fall when the kids are back in school. We can take PsA breaks together :-) And you can nap whenever you want ! We should start a PsA friendly travel group :-)
TigerGirl said:
I would love to get together! Nothing would be better than a tour guide that had to rest as much as me :-) haha. It's funny how we are embarrassed by our limitations. My friend wanted me to get a wheelchair for a long day of walking one time because my ankles were extremely swollen and given the choice bt not going at all or going in a wheelchair I chose not going- or actually hobbling along, I believe. She totally loves me to death and only had my best interest at heart. I never think less of anyone in a wheelchair but I can't see myself using one. Pride... On the way home I was nearly in tears from pain and suffered for days. You and I have nothing to be ashamed of. That same friend told me later- You didn't ask to be in the PsA club. It's true. It's not our fault we just have to cope the best we can. Thank God for good friends.
I do sympathise with you Frances, but as others have said hold on to the good moments and memories. How exciting that you have North Carolina coming up. I was always one to have "doing" holidays, seeing the sights, and on the go most of the time. Now I'm learning to sit and just drink in the atmosphere and reframe my expectations! I feel I have so much to learn in dealing with this disease.
Hi Frances, sorry your holiday left you feeling low. I'm in the middle of reading another book in "The Facts:" series and like the one recommended here on PsA is written by two experts. It's called "Living with a Long-Term Illness" by Frankie Campling and Michael Sharpe. Although I'm only halfway through it seems to offer lots of practical tools for managing fatigue, sleep, pain, pacing your activity etc etc. When I've finished it I will probably put a Book Review on here but just thought you might like to investigate it before then.
Thanks Jules. I would like to look it up on Amazon. The title is The Facts ?
Jules said:
Hi Frances, sorry your holiday left you feeling low. I'm in the middle of reading another book in "The Facts:" series and like the one recommended here on PsA is written by two experts. It's called "Living with a Long-Term Illness" by Frankie Campling and Michael Sharpe. Although I'm only halfway through it seems to offer lots of practical tools for managing fatigue, sleep, pain, pacing your activity etc etc. When I've finished it I will probably put a Book Review on here but just thought you might like to investigate it before then.
Aurora - I appreciate your advice and the others. I did have a lot of fun on the other days during my vacation and I should focus on that. People get sick on vacation - right? You always hear about the terrible diarrhea vacation stories ;-) At least I didn't have that :-)
AuroraB said:
I do sympathise with you Frances, but as others have said hold on to the good moments and memories. How exciting that you have North Carolina coming up. I was always one to have "doing" holidays, seeing the sights, and on the go most of the time. Now I'm learning to sit and just drink in the atmosphere and reframe my expectations! I feel I have so much to learn in dealing with this disease.
Thank you for starting this thread Frances. I have been feeling like such a “party pooper” this winter. And when I look back at times that I tried to push through the pain (usually feet) and then the fatigue, I always felt like a whiner. This forum is the only place I do not feel those feelings. Even in therapy I feel like her eyes almost glaze over bc she doesn’t really get it, bc she can’t. (Although I don’t selfishly wish she could ‘get it’).
A friend recently suggested going on a cruise. My first thought was, “I’m not sure I could, or would want to keep up with her”.
I was just thinking today, watching those people hike off in to the wilderness where an avalanche could likely occur, I used to love hiking by myself in remote places. (Sedona, Grand Canyon, The Pictured Rocks, the “back 40”)
Well anyways, I would have to adjust my “hikes” these days.
