I created an account for the first time yesterday and then freaked out and deleted it. But I realise now that the reason why I deleted is because it scared me. I've done very well with just "getting on" with my PsA for over 5 years now. I recently turned 21. I've had PsA since I was about 15. I've been taking Methotrexate since I was 16. Started on pills and then moved onto injections. I took the diagnosis quite well because it took a while for me to be diagnosed and I just wanted to know what was wrong with me. It seemed quite bad when it first started, i struggled to walk and do any sort of actives for a while. But then when I started methotrexate injections things started to clear up a bit. I started to think that the point of the drugs was that you could lead a normal life, and forget about your disease. Sadly, as much as i've tried, it's not really possible to forget. When I was at Uni i didn't tell most of my friends for the first year. A few of them still don't know. The problem is that I talk so little about it that people think it's not a problem, and they really don't understand. I know now that I need to be more open. It's sad that it's taken me 5 years to realise this. But the fact is that I really need people to talk to, who understand what i'm going through. And it's not weak to admit that you need support. Today I was meant to go out with my family for food. I had to cancel because I was really hurting, feeling so tired and fuzzy and frustrated. So they all canceled and they didn't seem happy about it. I felt awful. I think they thought i was just making excuses. They don't really understand and I find it very hard to explain. I cried alone in my room for a bit. Being on this website yesterday really changed something for me. I think it's probably the first time in 6 years that i've really accepted that I have a disease, and it can be really scary. I think everyone on here is so brave. People have always told me I was brave because i never even talk about it. That's not bravery. That's just sweeping everything under a rug. What all of you share on here is very brave. And what all of you are soldiering through makes you even braver. I posted my entire PsA journey yesterday, before I deleted my account. I don't think i have the stomach to do it again today. Maybe i'll post something sometime soon. Thank you for having me back everyone and sorry for the long post :)
Rosie, that's exactly what we're here for. This a good a safe place to vent, and to share with people who understand. I remember what it was like for me when I first came here: I was thrilled to find a place where people knew about (and understood) what was wrong with me, but I was also feeling a bit stunned and strange about sharing so many things that nobody else seems very interested in, so openly and freely. And as time went by, I realized that the sharing (and the understanding that I was getting) was helping me greatly, as well as helping everyone else as well. How cool is that?
Tired and fuzzy and frustrated? You made me smile: yes, that pretty much describes it!
No need to apologize for a long post: sometimes that what we all need. Welcome here, Rosie. I hope that you will find this a good place for support and information. I'm glad that you found us, but it's a shame that you're a member of the Club PsA too.
I'm glad you came back too, Rosie. Joining this group has been amazing for me, I was reluctant at first and then one day I took the plunge, it's been a game changer.
So, so happy you re-joined ... I was delighted to be on gate duty yesterday when your request came through :-)
I can't do 'strong' the way some people can. I do it my own way & I suspect there are many who have similar strategies. Thing is, I didn't realise it was a strategy for ages .... I thought it was weakness to cry or get angry or tell people what I was going through. Gradually I realised that I am probably surprisingly cheerful most of the time, that I get on with my life, that I'm not any kind of a victim even though I have periods of being right old moaning minny. If I just kept schtum I think I'd go mad. Seriously, I couldn't do it.
There are definitely situations where it's best to keep the whole damn thing to ourselves and people who can't understand or shouldn't have to try. That's my view anyway. But getting those closest to us informed and having an outlet - and this site is a wonderful outlet - helps with real strength, the kind that builds up and can help you live your life the way you want to.
I'm very glad you've joined too and especially glad that joining has helped already.
Hi Rosie,
Welcome and welcome back! Take care of yourself and don't be hard on yourself, things will get better. The brain fog was one of the scariest things for me and thankfully it is not a full-time part of my life but it's still difficult when it comes around during a flare. Getting plenty of sleep and not overdoing it help, sometimes it's just there and I have to be patient with myself. Maybe now I add more thoughtful pauses to my conversations (and presentations), I just work it in to my new style. Having PsA is nothing to be ashamed of, I was slow to share it as well. I think I was just in denial that I could carry on as usual and medicine would make me all better, no problems. Its a bit more complicated as we all find out, now I'm very open about it and hope to spread awareness about these kinds of conditions. Hang in there!
M
Hi Rosie, good on you, I only joined a few weeks ago and am so glad I did. I feel stronger for it whereas I had worried that it would be the opposite. So much info and such supportive generous people. I hope it helps.
MacMac