I’m not a ‘hugs’ person but I am now, great big bear hug to you.
Okay, okay, take a deep breath. I can tell you that my nearest and dearest (very near and very dear) have had all sorts of thoughts about me along the way, of that I am very sure. And they blow hot & cold: they ‘get’ it, then they completely forget that I have PsA, let alone understanding it, then they have a bit of a think over the years and lo & behold there’s much more empathy and intelligent understanding … and so on & so forth!!
I am just the same. I may, privately, wonder whether someone is exaggerating, or over-thinking or just plain being a misery guts. Then I let it all sit … I listen to them a bit more, I ponder, and then there usually comes a point at which my views change.
It’s a process, it’s all a process. Keep your head high throughout. Your d-i-l doesn’t deserve a response from you right now, you don’t have to defend yourself, you don’t have to do anything other than keep your dignity and self-belief. It’ll all be okay.
It’s hard sometimes Angie. But as Sybil says it’s all a process. Being ill, being in pain etc etc just stinks. Often though for those nearest to us, it stinks too but for different reasons. Remember this though, her reaction to your illness is actually her problem and not yours. Ours is a relatively invisible illness so it’s not surprising many think we’re all just ‘mad’. It helps when we do have that ‘diagnosis’ in a nice letter from a doctor but that often doesn’t help people to understand any better either.
Just we adjust to this illness, those around us are doing likewise. But we all do it differently and at a different pace. And we all face issues in coming to terms with it, some causing barriers that take a while to crumble down again.
So be patient with her and indeed be patient with you. No one tells us (and they should) that have a long term illness like we have, requires bottomless reserves of just patience. Boring, boring, boring patience. Boring to the point of severe irritation too, not just for us but for those close to us.
@Sybil thank you!
I think she said that because I have good days and bad days. Not the same every day but she doesn’t understand how it affects different parts of me some days than others. Not an excuse for her at all. Just trying to understand why. I guess. Idk.
My husband knows and sees and stands beside me. He’s going with me to every appointment. He told me yesterday that my gyno wouldn’t have referred me to a rheumatologist if SHE thought nothing was wrong. The rheumatologist wouldn’t have ordered all the tests and wrote on my record that everything is characteristic of autoimmune disease if nothing is wrong.
And my husband is right. God bless him. God bless you too! Thank you!
@Poo_therapy thank you!
Yes patience. As irritating as it can be, yes patience. She’s 22 years old. She has NO idea! She hasn’t had to feel what I feel. But like you said, that’s her problem, not mine.
My husband knows and sees and supports me. I thank God for him! I’m thankful for you too and this forum ! God bless you.
Once the mould is cleaned off, spraying or wiping tea tree oil over the surface goes a long way to preventing recurrence, though of course so would adequate ventilation. I used tea tree oil on my windowless, partly subterranean bathroom walls and it worked a treat. It is strong stuff so needs to be used according to instructions, diluted probably.
Okay, just actually read the relevant post and the culprit’s a carpet - not so easy!
So this only has a tenuous link to PsA I know but it’s kind of my thing … I think I’d vote for bare boards if it’s a mouldy sort of room, (assuming there are some), get the air flowing, no adhesive in the materials or the fixing … I’ve interfered enough now
I don’t think that they don’t believe you, i just think they don’t fully understand. I don’t hear our see my friends if that is what you want to call them. I get flare ups regularly. Not only do i have psoriatic arthritis, i have Oste and fibromyalgia, my daughter gives me strength and lots of praying. My right knee has been bothing me for sometime now last Monday i was just walking and my ligament popped, can i get break. Its rough, people will never get it unless they are going through it. Its hard to do everything, sometimes i just want to curl up and die, but i dont have that option. Dont let them make you feel bad ok, sometimes you have to manipulate people to get them to understand, just a thought.
Hi tamac, reading what you put about people/family not understanding the pain your going through I know exactly what you mean I am in the UK I first got pains in my knees which I thought was due to going by coach to see a theatre show with some friends works company trip. We’d paid for the tickets and then my brother said he & his wife were inviting all the family to their joint 40th birthday party that day so unfortunately I couldn’t go. I was wearing some brand new leather sandals and it turned out the coach driver couldn’t park near the theatre and with it being a very hot August day my feet must’ve swelled up causing several blisters on each foot and this was making me having to walk strangely as it was so painful on my feet. The following week I got pains in my knees that wouldn’t go and I started getting very tired between 5-6pm, thought was this my punishment for not going to my brother’s 40th party! I mentioned it to my GP who was the head of the GP practice and he gave me nothing for it! 4 months later it had got worse so I went back and all he could say was it might be arthritis, I said “What at my age?” I was 36 and he said even children can get arthritis, then he mentioned the herbal shop next do for alternative medicines. I later found out the new shop next door was run by his wife! I decided to see a different doctor at the practice and he had a blood test done and as my CRP levels were very raised he made a referral for me to see a Rheumatology Consultant at our local hospital. The consultant checked all my joints and from my blood test said I had Psoriatic Arthritis and put me on Folic Acid and Methotrexate. Which helped for the first few years then I had a very stressful time at work and it came back with vengeance. I had told my parents and siblings and even printed information off and showed it to my mum but none of them bothered to phone me or offer to help in any way. My Rheumatologist was just increasing the Methotrexate which no longer seemed to be working and making me feel very sick. I had lost 2 stone before the arthritis became bad but with the pain and nausea from the increased in Methotrexate I lost another 2 stone. I searched on the internet for another consultant that dealt specifically with PA, sent him an email with all my blood tests results and he agreed to see me with my GP making a referral I could see him at Royal Free Hospital in London. When I told my mum she didn’t even bother phoning me to see how I got on! So the next appointment in London when I got the train back I got off at their town and called in on them and she still didn’t ask about how I was. My dad was the one that seemed more interested as he said our local hospital sounded like they were treating me like a Guinee pig! I was ill off work and not put on some and it was only after about 5 months I was put on some new medication and in all that time my parents didn’t come and visit me or phone me at all!! I was only 12 miles away from them. Thankfully the new medication started to work and I’ve been on Etoricoxib, Amitriptyline, Azathioprine and Lansoprol ever since. 7 or 8 years down the line my father had passed away and mum had moved to be near my brother. She needed an engineer to covert her old TV to make it accept digital channels so I stayed the night at her flat. When I got my doset box out she said “What on earth are you taking all those tablets for?” I felt like saying I’m hardly taking them for the fun of it!! She passed away in 2015 and its always made me wonder did she not believe me, did she think I made it all up to get sympathy or was it some sort of dementia that had made her forget. Sorry I waffled on so much, better get to bed.
I started with joint problems in 2001 and it took 4 rheumatologists and several years for an answer. The first one laughed at my primary care doctor and me because she thought I had lupus. Funny.
I now look at it this way. People don’t really understand things they haven’t experienced themselves. I did not understand how hard parenting was until I had children. I did not understand how scary having cancer is until I had cancer cells removed for 2 different cancers. I did not understand how devastating it is to lose a child until mine was gone. You always connect with those in pain but don’t really understand until you go through it. I don’t wish anyone to have to go through it just to understand. (Well maybe some people could have a day of it if they are especially rude) It is annoying to have to explain to the the same people why I am limping or unsteady today but wasn’t yesterday every time but I let it go. Spoons to you all.
I am sorry for what your going through. I’m not sure my problem should be here. But here we go. I was diagnosed with pSa a couple years ago than I was diagnosed with breast cancer 1 year later, which I had a lumpectomy 2/26 this year. My husband at the time realized I had the breast cancer. But it wasn’t bad so no treatment for it after the surgery. Thank goodness. I have to go back, when I said my husband at the time, I left him 10/25 this year. Should have done it years ago. As far as the pSa goes, No one understands how I feel. Even my friend who kept pushing me to get things done. I did what she told me to do, but not when she said. I got it done. My brother who lives in Florida wanted me to come to him. If my sis in law haven’t said she wanted me to come down I wouldn’t have said yes. But here I am. After I was here about 1week I couldn’t put any weight on my right foot and leg,so I spent about 1 week off my leg. Now I can walk again, it hurts still. A lot of the problem is of my own making. I have trouble letting people help me.
How does everyone deal with Psa? Has anybody met anyone else with Psa? I wonder if it would help us, having someone to talk to that understands what all of us are going through.
I do have to tell everyone that I dumped on in October, thing have gotten better for me. Not physically but emotionally. I do wish I could go back to New Jersey. I do miss it.
@AnneJ Yes, ditto. The fatigue is debilitating. Besides pain and mobility, fatigue and brain fog is my worst problem. I feel what you are saying well said.
My old supervisor had a suggestion for treating PsA, he said “why don’t you just die”, I was confused by his comment, I asked if he meant assisted suicide, he said “die naturally”… I guess he thought I was kept alive by the biologics? Actually we are following his suggestion, but it will take a few years!
What a “well of compassion”, that one is.
Well believe it or not some of us ARE kept alive by the biologics. Joint pain and fatigue are the least of the problems gifted to some of us by this thing we call PsA. I really wish that’s all I had.
I look back fondly on those days, before: heart failure, stroke, Urinary track failure, digestive system failures, Uveitis Liver issues, nerve entrapments etc… Amazing what systemic inflammation can do. Yeah more than once I have considered bunching the biologics (and the rest) 23 surgeries is enough! Sounds like your old supervisor gave you a dose of truth you weren’t ready for.
Not quite following you here, I thought this was a support group?
I don’t see it as a wake up call, I think it is just plain rude. But perhaps I am missunderstood the encouragement you are trying to convey…
I am in the UK I first got pains in my knees which I thought was due to going by coach to see a theatre show with some friends works company trip. We’d paid for the tickets and then my brother said he & his wife were inviting all the family to their joint 40th birthday party that day so unfortunately I couldn’t go. I was wearing some brand new leather sandals and it turned out the coach driver couldn’t park near the theatre and with it being a very hot August day my feet must’ve swelled up causing several blisters on each foot and this was making me having to walk strangely as it was so painful on my feet. The following week I got pains in my knees that wouldn’t go and I started getting very tired between 5-6pm, thought was this my punishment for not going to my brother’s 40th party! I mentioned it to my GP who was the head of the GP practice and he gave me nothing for it! 4 months later it had got worse so I went back and all he could say was it might be arthritis, I said “What at my age?” I was 36 and he said even children can get arthritis, then he mentioned the herbal shop next do for alternative medicines. I later found out the new shop next door was run by his wife! I decided to see a different doctor at the practice and he had a blood test done and as my CRP levels were very raised he made a referral for me to see a Rheumatology Consultant at our local hospital. The consultant checked all my joints and from my blood test said I had Psoriatic Arthritis and put me on Folic Acid and Methotrexate. Which helped for the first few years then I had a very stressful time at work and it came back with vengeance. I had told my parents and siblings and even printed information off and showed it to my mum but none of them bothered to phone me or offer to help in any way. My Rheumatologist was just increasing the Methotrexate which no longer seemed to be working and making me feel very sick. I had lost 2 stone before the arthritis became bad but with the pain and nausea from the increased in Methotrexate I lost another 2 stone. I searched on the internet for another consultant that dealt specifically with PA, sent him an email with all my blood tests results and he agreed to see me with my GP making a referral I could see him at Royal Free Hospital in London. When I told my mum she didn’t even bother phoning me to see how I got on! So the next appointment in London when I got the train back I got off at their town and called in on them and she still didn’t ask about how I was. My dad was the one that seemed more interested as he said our local hospital sounded like they were treating me like a Guinee pig! I was ill off work and not put on some and it was only after about 5 months I was put on some new medication and in all that time my parents didn’t come and visit me or phone me at all!! I was only 12 miles away from them. Thankfully the new medication started to work and I’ve been on Etoricoxib, Amitriptyline, Azathioprine and Lansoprol ever since. 7 or 8 years down the line my father had passed away and mum had moved to be near my brother. She needed an engineer to covert her old TV to make it accept digital channels so I stayed the night at her flat. When I got my doset box out she said “What on earth are you taking all those tablets for?” I felt like saying I’m hardly taking them for the fun of it!! She passed away in 2015 and its always made me wonder did she not believe me, did she think I made it all up to get sympathy or was it some sort of dementia that had made her forget. Sorry I waffled on so much, better get to bed. 