The weather hasn't bee arthritis friendly here near Washington, DC and I've been in bed for 2 days with extreme fatigue. I slept 18 hours of the last 24 hours and continue to have nightmares all day. I'm so exhausted I feel I'll never get out of bed. And then I think about the next time I'm struck down with debilitating fatigue. When is it going to strike and what social outing is it going to ruin. It's bad enough I have to deal with fatigue all the time, but this is horrible. I can't function and I'm all alone in my house except for my cat and it will probably always be that way because what man would want to be tied down with a woman who can't get out of bed for days at a time.
Hey Frances :::give you a gentle rub on the shoulder:::
We're here to listen, ok? And I'm so glad you posted. It is really hard to not just want to give up and weep in bed sometimes isn't it. And that's ok. Give in to it for a day or two.
Then it's time to get up, call your dr, and tell him exactly how your PsA is debilitating your life, and that you NEED to function better. Ask your rheumy what ideas they have to help you reach that goal.
I think you are having a hard time adjusting to not being able to keep up with friends. I think it is time for you to send a mass email, with frank explanations, to your friend group. Let them know you have this disease, it is causing limitations, and it is impacting your social life and you need to make some changes.
Give three concrete things your friends can do with this information such as 1) don't stop inviting you to things, just know that there may be times you have to cancel or you may suddenly be able to come, based on how you feel. 2) Ask if any of them would be interested in a semi-regular ladies "slumber party" evening at your house. A movie, popcorn, wine, painting nails, etc. This has actually pretty popular right now! If you are too tired to leave the house, have everyone come to you in a way that doesn't expect dressing up and vivacious socializing which can really be tough. 3) that you are going to start suggesting social outtings that are easier for you. They may be different than what your friend group is used to, but they should give it a try.
You will most likely be AMAZED at how accommodating friends will be if you are UP FRONT and have CLEAR SUGGESTIONS.
As for being 'forever alone', I don't think you need to resign yourself to that if you don't want to. From your pic I can see you are a beautiful woman, and everything you post here show you are intelligent, self-aware, compassionate, and smart. Many of us here are married, partnered, or dating, and deal with moderate to severe PsA at the same time. Even seniors find love, and have fulfilling relationships, and many of them have health issues and can't do very much. Health issues are not necessarily a barrier to a great relationship.
Hugs if you would like them Frances. Give your kitty a cuddle for me, and have a good cry if you need it. It's going to be ok.
Thanks Marietta. All good suggestions. I missed my rheumy appointment today because I was so fatigued - when I get like this it feels like I've been drugged. Because it could take a month + to get an appointment, I was thinking of writing him a letter explaining how debilitating the fatigue is and dropping it off at his office. I don't think he gets it and I don't think I've explained it well enough. And my kitty is lying here next to me in bed :-)
Thanks again for responding.
Marietta said:
Hey Frances :::give you a gentle rub on the shoulder:::
We're here to listen, ok? And I'm so glad you posted. It is really hard to not just want to give up and weep in bed sometimes isn't it. And that's ok. Give in to it for a day or two.
Then it's time to get up, call your dr, and tell him exactly how your PsA is debilitating your life, and that you NEED to function better. Ask your rheumy what ideas they have to help you reach that goal.
I think you are having a hard time adjusting to not being able to keep up with friends. I think it is time for you to send a mass email, with frank explanations, to your friend group. Let them know you have this disease, it is causing limitations, and it is impacting your social life and you need to make some changes.
Give three concrete things your friends can do with this information such as 1) don't stop inviting you to things, just know that there may be times you have to cancel or you may suddenly be able to come, based on how you feel. 2) Ask if any of them would be interested in a semi-regular ladies "slumber party" evening at your house. A movie, popcorn, wine, painting nails, etc. This has actually pretty popular right now! If you are too tired to leave the house, have everyone come to you in a way that doesn't expect dressing up and vivacious socializing which can really be tough. 3) that you are going to start suggesting social outtings that are easier for you. They may be different than what your friend group is used to, but they should give it a try.
You will most likely be AMAZED at how accommodating friends will be if you are UP FRONT and have CLEAR SUGGESTIONS.
As for being 'forever alone', I don't think you need to resign yourself to that if you don't want to. From your pic I can see you are a beautiful woman, and everything you post here show you are intelligent, self-aware, compassionate, and smart. Many of us here are married, partnered, or dating, and deal with moderate to severe PsA at the same time. Even seniors find love, and have fulfilling relationships, and many of them have health issues and can't do very much. Health issues are not necessarily a barrier to a great relationship.
Hugs if you would like them Frances. Give your kitty a cuddle for me, and have a good cry if you need it. It's going to be ok.
I know that drugged fatigue feeling. It is THE WORST. I'm the queen of iron willpower, and can get through most things with this disease, but the fatigue you describe is really astounding in how debilitating it is.
You need to call your dr, and explain that you are doing so badly you couldn't even come in. Then don't take no for an answer and demand to be worked in at the next available spot. All dr. offices leave spots for emergencies. You ARE that emergency patient. Then when you get there, have something written down to help you explain the seriousness of your situation.
The extreme fatigue comes on me when my disease is out of control. That's pretty serious. You really need to be seen get your dr. to give you some choices of what to do next.
Frances said:
Thanks Marietta. All good suggestions. I missed my rheumy appointment today because I was so fatigued - when I get like this it feels like I've been drugged. Because it could take a month + to get an appointment, I was thinking of writing him a letter explaining how debilitating the fatigue is and dropping it off at his office. I don't think he gets it and I don't think I've explained it well enough. And my kitty is lying here next to me in bed :-)
Oh Frances, I’m sorry. You had a difficult holiday, and now this winter and your fatigue just will not let up. Marietta has great suggestions. And your idea of writing it all down for the rheumatologist is excellent. While you’re at it, copy it to your GP. My experience with communicating with doctors is that written communications (especially faxes) really catch their attention. Any way you could send a fax? (I subscribe to an fax-to-email service, just for the purpose of communicating with medical folks.)
I hope that you’ll be able to see your rheumatologist, and maybe your GP, soon. Wish I could come over and bring you a heat 'n eat dinner and some cheery flowers!
I would send a fax, but I tried that once and my rheumy never got it. The practice is large with several offices. including orthopedics and rheumys. My rheumy said faxing him isn't a good idea.
Seenie said:
Oh Frances, I'm sorry. You had a difficult holiday, and now this winter and your fatigue just will not let up. Marietta has great suggestions. And your idea of writing it all down for the rheumatologist is excellent. While you're at it, copy it to your GP. My experience with communicating with doctors is that written communications (especially faxes) really catch their attention. Any way you could send a fax? (I subscribe to an fax-to-email service, just for the purpose of communicating with medical folks.)
I hope that you'll be able to see your rheumatologist, and maybe your GP, soon. Wish I could come over and bring you a heat 'n eat dinner and some cheery flowers!
Right. Then it’s a letter. And as soon as possible. I hope you get in to see him soon.
Chin up, Frances! Spring is on the way!
Thanks Seenie. I know this will pass. It's just been a horrible 2 days.
Frances,
I am so sorry to hear that you feel so crappy. It has been a really tough winter and it has been so hard not to lose hope. It sounds like you have part of the problem figured with you letter idea, so the sooner you can get up and get moving on that the better. They can't treat us if they don't get what is going on. :-)
If you need company let me know. I have been hoping to work on my blanket some more and we can just sit, chat, watch TV, veg, whatever. We are an exciting couple of ladies for sure! I can only guess how hard the social changes are for you; you are such a social being. I'm a bit of a hermit, so it doesn't bother me as much :-P
I really hope you get a respite from this soon; I can imagine how much you need a break.
Frances,
I am so sorry to hear you are still having such a tough go. I think the letter is a great idea. It helps to organize your thoughts. I have written such letters and it was really helpful. My attitude change from being very down to being very determined to see that my doctor respond to the reality of my situation. I think it is an excellent strategy. I also realized that I tended to rest up and try to be at my best when I went to appointments. My thinking was that I needed to be engaged and alert in order to have a productive encounter with my doctor. I later realized that had I arrived in his office in bad shape, it might have moved things along a lot quicker. Now I go regardless of what shape I am in. If I have to take a cab, or have a friend drive me, then that is what I do. Hell, I would even crawl in at this point if that is what it takes to get their attention. I hope you are able to get your rheumy to see just how profound your fatigue is. They need to improve your current treatment or as we have discussed before, at least treat the fatigue directly if that is what it comes to. I hope you can get an appointment soon and finally get some relief.
As far as your other worries... trust me, you needn't worry ;) You are an exceptional woman. I know you will get through this. Hang in there!
Marietta, I'm a little better today, but extremely fatigued, so I did call my rheumy and left a firm message that I needed to speak to my doc today.
Marietta said:
Hey Frances :::give you a gentle rub on the shoulder:::
We're here to listen, ok? And I'm so glad you posted. It is really hard to not just want to give up and weep in bed sometimes isn't it. And that's ok. Give in to it for a day or two.
Then it's time to get up, call your dr, and tell him exactly how your PsA is debilitating your life, and that you NEED to function better. Ask your rheumy what ideas they have to help you reach that goal.
I think you are having a hard time adjusting to not being able to keep up with friends. I think it is time for you to send a mass email, with frank explanations, to your friend group. Let them know you have this disease, it is causing limitations, and it is impacting your social life and you need to make some changes.
Give three concrete things your friends can do with this information such as 1) don't stop inviting you to things, just know that there may be times you have to cancel or you may suddenly be able to come, based on how you feel. 2) Ask if any of them would be interested in a semi-regular ladies "slumber party" evening at your house. A movie, popcorn, wine, painting nails, etc. This has actually pretty popular right now! If you are too tired to leave the house, have everyone come to you in a way that doesn't expect dressing up and vivacious socializing which can really be tough. 3) that you are going to start suggesting social outtings that are easier for you. They may be different than what your friend group is used to, but they should give it a try.
You will most likely be AMAZED at how accommodating friends will be if you are UP FRONT and have CLEAR SUGGESTIONS.
As for being 'forever alone', I don't think you need to resign yourself to that if you don't want to. From your pic I can see you are a beautiful woman, and everything you post here show you are intelligent, self-aware, compassionate, and smart. Many of us here are married, partnered, or dating, and deal with moderate to severe PsA at the same time. Even seniors find love, and have fulfilling relationships, and many of them have health issues and can't do very much. Health issues are not necessarily a barrier to a great relationship.
Hugs if you would like them Frances. Give your kitty a cuddle for me, and have a good cry if you need it. It's going to be ok.
Sorry to hear you are having such a miserable time. Some really good practical advice in this thread - which I'm noting for my own use! So thanks for posting Frances as by doing so you've helped someone else. Hoping you get some good advice from your doctor.
thanks AuroaB
AuroraB said:
Sorry to hear you are having such a miserable time. Some really good practical advice in this thread - which I'm noting for my own use! So thanks for posting Frances as by doing so you've helped someone else. Hoping you get some good advice from your doctor.
Good move, Frances. I hope your doc pulls a rabbit out of the hat for you. Things will get better, you know that.
And Aurora, you are right: when we post and discuss in a constructive way, it helps everyone that reads it, not only the poster. That’s the beauty of a community like this.
Thanks so much for the offer. I'm so fatigued and lethargic I can't even visit with people. I'm in bed and that's about all I can do.
GrumpyCat said:
Frances,
I am so sorry to hear that you feel so crappy. It has been a really tough winter and it has been so hard not to lose hope. It sounds like you have part of the problem figured with you letter idea, so the sooner you can get up and get moving on that the better. They can't treat us if they don't get what is going on. :-)
If you need company let me know. I have been hoping to work on my blanket some more and we can just sit, chat, watch TV, veg, whatever. We are an exciting couple of ladies for sure! I can only guess how hard the social changes are for you; you are such a social being. I'm a bit of a hermit, so it doesn't bother me as much :-P
I really hope you get a respite from this soon; I can imagine how much you need a break.
Thanks for the l and reply Sybil and yes everyone's suggestions have been great!
sybil said:
Hi Frances, you've had some really great suggestions. The round robin to friends idea sounds so proactive. Though at first I read Marietta's suggestion as inviting friends round for 'a movie, porn, wine .....' and thought, yeah, that'll get 'em!
Don't give up on all the things you want from life. I'm always prone to fatalism but it's such a vicious circle thinking like that. When good changes come my way the defeatist thoughts evaporate and I wondered why I ever allowed them to depress me further.
Wishing you well, fingers crossed for much, much improvement in your PsA.
On second thought, if I'm feeling better and you aren't busy a visit with you would be terrific. I just have to see how I feel. Thanks again !
GrumpyCat said:
Frances,
I am so sorry to hear that you feel so crappy. It has been a really tough winter and it has been so hard not to lose hope. It sounds like you have part of the problem figured with you letter idea, so the sooner you can get up and get moving on that the better. They can't treat us if they don't get what is going on. :-)
If you need company let me know. I have been hoping to work on my blanket some more and we can just sit, chat, watch TV, veg, whatever. We are an exciting couple of ladies for sure! I can only guess how hard the social changes are for you; you are such a social being. I'm a bit of a hermit, so it doesn't bother me as much :-P
I really hope you get a respite from this soon; I can imagine how much you need a break.
I want to thank everyone for their replies - they are soooo helpful. I'm terrible about asking for help or telling my friends I'm not feeling well. In fact, I haven't told any of my friends I'm not feeling well now. But, I feel comfortable tell you all, when I'm down and not well.
So thanks so much for being here for me - every response is helpful and I'm so appreciative.
warmly,
Frances
I'm sleeping less but still in bed. My doc office called yesterday and said that my rheumy said my symptoms warrant going to the Emergency Room. So, I spent a VERY long time explaining to his assistant that this happens to me often - I get extremely fatigued and sleep for days 18+ hours/day. I don't have a fever, infection etc. And that I'm fatigued all the time. She made an appointment for April 1st and I'm going in with detailed notes to keep me on track in explaining my fatigue issue. Maybe I need to increase my Enbrel dose?
Can you imagine if I went to the ER and said I'm tired, just tired?
Well it's day 5 and I'm still in bed with extreme fatigue. I really thought I would be out of beds days ago. Anyone have any thoughts on how atypical this is? I have no other systems, just fatigue.