Psoriatic arthritis

Rebeccamason

Hello everyone, just wanted to say hello and to share my feelings a little, if that’s ok? I’m struggling with my psoriatic arthritis today big time, and feeling quite alone with it. I’ve had to cancel my counselling clients, which I hate doing, because I don’t like letting them down, plus it concerns me that it indicates that I can’t cope with normal everyday life because of my condition. This is something which terrifies me when thinking to the future and my capacity to work. I’m also supposed to be taking my daughter away for her birthday this evening, and have so much preparation to do, but feel like doing none of it. I have had PsA for 15 years, and know full well that I should rest today and wait for the flare up to pass, but this is not an option all day. I have never before spoken to or contacted others in a similar situation to me, but feel a bit desperate today, and just wanted to offload! I have close friends who sort of understand my illness, but it is difficult for them to fully grasp it because I hide away when it’s at its worst. When I’m out and about looking well, some people assume I don’t have that disease anymore, so it then looks odd when I don’t attend social events, etc. Thank you for listening.

Rebecca

stickywicket

When my two sons were young I had many days like yours. You push yourself for their sakes even though you can feel the payback starting already. To be honest, I think having to push through pain for the sake of our families is no bad thing generally. But it becomes bad when it becomes the norm.

You say you're flaring. How about ringing your rheumatology helpline for advice? Sometimes our regular DMARDS stop working as well as they did and they need tweaking or something else adding to the mix.

As for friends - we all need at least one person with whom we can just be ourselves and tell it like it is. We don't have to be miserable all the time (God forbid!) but we do need to be able to say "I'm sorry, I can't. My arthritis isn't great today." Good friends are with us for the bad times as well as the good.

have a read of these two sites. They're both great, in different way, at explaining how things are for us.

http://asone.nass.co.uk/the-gorilla-in-your-house/

https://creakyjoints.org.au/living-with-arthritis/how-the-spoon-theory-helps-me-explain-the-fatigue-of-chronic-illness/