Hi everyone I’m in bed 7.30 pm Friday night can be bothered with anything,can’t see the point.So tired,emotionally and physically.What are you all up too?,give me something to hope for.A life with this ilness.
I’m in bed too, Friday 5 pm.
Hang in there ladies, this is temporary. You will feel good again.
Your bed or hospital bed?????
I'm in bed too, Friday 5 pm.
I know exactly what you mean. I've been bedridden/couch-ridden all day today & collapsed twice yesterday... Would probably have called 911 if I could have reached the phone... It was really emotional. As a nature/exercise loving 25 year old, I want to be out there hiking, running & bicycling. One good thing that has come from this is that I appreciate everything much more than I used to. I am glad that I am alive & that this isn't going to kill me. Although it's damn hard to appreciate things being in this physical condition, I'm succeeding in changing my outlook on life. I'm starting to pick up books that have helped me in the past & meditate. There are good things and people in this life, and this illness has helped me to remember that. Not sure if that helps - But I believe like a flower out of dirt, good things can come from the bad we're all experiencing. Being a musician (professional classical guitarist) makes it extra hard since my playing has been severely affected, but in times like these I've recently liked to listen to Byron Janis or Shawn Lane; Both musicians who had/have bad cases of psoriatic arthritis.
Hi MIss S. I understood you were recently diagnosed? Give yourself a break an rest when you need to, work with your docs to get the right treatment plan and understand that may take awhile. Don't feel guilty asking friends and family to help - especially since you have small children. And don't forget we are here to help and support you !
There is a post awhile back asking for suggestions on what to do when you're stuck in bed too exhausted to do anything. There were a ton of suggestions.
This weekend on the Seattle area we are having FANTASTIC weather (sunny, almost 70), and I am going to lay on blanket in the backyard reading a book and just revel in the great weather. I would probably be doing this with or without PsA, honestly.
If you have pets, they can be GREAT for keeping your mood up, even a pet as small as a hamster or gerbil. Pets help with loneliness, they don't judge, and since they need you, you can feel like you're accomplishing something important by caring for them.
Hang in there, enjoy some TV, cozy pajamas, and snacks in bed. Read a good book, listen to music, or a podcast. And remember that LOTS of us have been, are, or will be, right alongside you.
HI Miss S, how are you feeling today? Frances
Hi Frances it’s so nice of you to ask how l am,I’ve just taken my methotrexate its just been increased so I’m in bed hoping to sleep through some of the side effects.l really hate to give negative thoughts on the site as I’m sure most of you are having a worse time than me, I’m really struggling emotionally I’ve not much support.In fact I’ve lost some who I’d class to be close friends when l started to become unwell they seemed to run a mile.l just feel so desperate I don’t like the way I’m feeling at all,I feel needy the first time ever in my life like I want to be looked after,it’s heartbreaking and I’m sick of crying to myself.Sorry to give you a moaning response.I truly appreciate you thinking of me.
I hear you Miss S. I, as well as others on this site have been saddened by friends and family who just couldn't cope and ran with their tails between their legs. But just remember we are better off than they are at least we have kindness and integrity. But do shed your tears for them so you are ready for the next PsA adventure. I am on medication for depression and seek counseling when necessary as many people with PsA or other auto immune patients do. There is no shame in it, it really helps with coping with PsA and the anger/hurt when people bail. And remember we are here for and with you.
That’s so nice Michael,we are all total strangers to each other but you all seem to be my life line,I am so glad I’ve found this site.l feel for everyone I can see myself in everyone’s comments.Thank you for the support.
hi I’m not in hospital,thankyou for the gift it’s a lovely thought.
Your bed or hospital bed???
Seenie said:I’m in bed too, Friday 5 pm.
I also hear you Miss S! It's been interesting the close friends I've lost and other friends/acquaintances that have been so caring and are now close friends. I think some people are capable of handling issues like ours and others aren't. I try not to spend any time thinking about the friends I've lost and have great admiration for my new friends who have big caring hearts. I hope you also find new caring friends - in fact you already have ! All of us on this forum are here to help and support you !
Bless you Frances,I’m so glad! :-)))
I think a quote from my mother sums up the snubs we have all suffered from friends and family. I offered to send her some information on PsA as she kept sending me helpful hints for arthritis. Unfortunately as often happens the advise was geared to OSTEO not psoriatic arthritis. My mother responded, "no thank you dear. I am really not that interested." Why thank you, Mom.
Don't give in to this disease. It does take time to get onto the right meds and most of the meds take months before you start to see results. There is so much more you can do to help yourself while this is happening. These are a few suggestions. Have you tried ice packs or heat to see if it helps your pain. Sometimes alternate ice and heat or one or the other might work better for you. There is Physiotherapy, Pain Management help available which might help. Counseling/therapy can help if you feel stuck and it should help you work out how to live with this disease and move forward if you can't get there on your own. There is also a TENS unit that might help your pain. I found going to a heated swimming pool and doing gentle exercises helps. I find it is all about pacing myself and taking rests in between. Hope I have helped you in some small way.
I've been impressed by the loyalty of some of my friends and family, and realised that I've been made to realise that I've not always been the most loyal of friends when some of my own friends have had their problems to deal with.
I think for a lot of people, they don't (maybe even can't) understand until they themselves have been thru something like this.
Don't give up hope on them though, try and be forgiving, and don't shut the door on them completely, things change...
Sadly Fatigue is a part of this disease. It needs to be treated. Getting inflammation under control is a start. some times its necessary to treat the depression naturally that comes from the body fighting pain, inflammation and dpleting your epinephrine levels. There are drugs to help with this of course, but exercise and movement (no matter how little at first) is also REALLY helpful. You may amaze yourself what you can do once you start.
There is also another advantage if you work your hands so you can form a fist... With just a little more work you can form that fist while leaving the middle finger extended, just the thing for those "friends" of yours..........
Thanks everyone,and tntlamb that made my day! loved that last comment we still keep our humour what ever life gives us.
Lamb has a succinct way of getting to the point and getting us back onto the important stuff!
Some days my middle finger is all that gets exercise.........