If you were to write a letter to a dear friend to describe and explain just how this disease psa makes you feel and what you go thru on a daily basis. What would you say to them?
Most of what is on ButYouDontLookSick.com, especially the spoon theory.
I would say I feel like i have the flu, ran a marathaon and an injured leg all at the same time.
Then I would say, please so not hesitate to ask me to be included in events for I can always say no but it is nice to be feel wanted.
I guess I wouldn't write a letter (or much of anything else) I might give them a copy of the spoon theory. Everyone's disease is different and at any given time is different than the day, week, or month before. Even after all the years I have dealt with it, I'm not sure I can explain it.
I have some very dear friends, some since childhood. I have never had to explain it to any of them. They are my friends and they support me where I'm at. Same with family members. if they don't, can't or won't - tough. Its not MY problem. By giving an explanation, I am giving in to the disease and in some measure defining myself by the disease. Worse I am giving those people permission to define me by the disease. Neither one is something that will ever happen.
Here's the funny thing by by giving an "explanation" you are giving permission to be judged..... (if you have a friend who "deserves" an "needs" an explanation, you NEED a new friend) By simply telling them I have an progressive autoimmune disease, that is worse sometimes than others and can effect any joint in the body or organ in my body at anytime,, you have told them everything they need to know. If you want, you can tell them what you need to tell yourself every morning (and sometimes every 15 minutes through the day) I can fight this if I take, my meds, keep myself healthy, and keep my body moving. I will have as much of a life as I am willing to take and as a little as I am willing to accept
Too much information and detail sometimes makes you look like you are seeking attention and/or sympathy. You may actually get it - for a while. But at some point you may also start to look weak as you move in and out of remission/flares. If you look weak to others, would will start to look weak to yourself.
Granted this is a FREE opinion from a known high-achiever who can handle the worst this disease can dish out, because he has no other choice (he won't allow one) and can't understand (like most men) why when a simple cold comes along he can't get around the the clock nursing care. As such you are entitled to a full refund. But pleas consider what I have said and why I say it.
Thus was only a hypothetical question. Just to hear what people would say. Just to hear how this affects everyone so difficult. But, it didn’t get to that i guess. Everyone wants to fall back on a website. It was for me to help me understand. Just trying to get a better understanding. Just didn’t really want to hear about the spoons, wanted true feelings. Sorry for the confusion.
Sybil,
You aren't the only one! I've never had a Facebook account. I'm active in many communities online, and have my friends, and figure I don't have the energy for anything else :)
sybil said:
I know what you mean about falling back on a website, I think. I can't believe I'm exposing my self like this - I never even got into facebook.
Just as others have mentioned, the first thought that came to my mind was the spoon theory. Just in my thoughts it really does break it down pretty easy so others can get a pretty good picture of what it's like to live with this disease and how we must become really good at learning how to manage the events of our day.
Granted this is a FREE opinion from a known high-achiever who can handle the worst this disease can dish out, because he has no other choice (he won't allow one) and can't understand (like most men) why when a simple cold comes along he can't get around the the clock nursing care. As such you are entitled to a full refund. But pleas consider what I have said and why I say it.
You crack me up, Lamb!
I have a healthy friend, and she wanted to know what it feels like to have PsA. I told her this: “you’ve been in a car accident right? And you know how you feel two days after that? Well, that’s how I feel on my good days”. She instantly understood it, and added, “Well, that really sucks.” It sure does. It’s nice when someone wants to understand me more. Mostly, I have a good group of people in my life. If you are judgemental, I’ll drop you like a hot rock. I disowned my brother two weeks ago. To quote Sugar Brown, “Ain’t nobody got time for that.”
I like to spoon theory too.
After having lots of friends ask me, out of genuine concern and really wanting to understand what it's like for me, I wrote a blog post about it - http://rannygahoots.blogspot.com/2011/07/psa-on-psa.html :
People ask me what life is like living with Psoriatic Arthritis (PsA). I’ve tried many ways of explaining it that just don’t do it justice. The easiest way I can explain it is as follows:The PsA in my body is a toddler. Upon waking in the morning, the PsA says, “Guess what?” and my instinct is to say “What?” but there’s the moment beforehand when I know that I really don’t want to know the answer. Luckily my body doesn’t give typical toddler answers like, “I wet the bed,” or “Remember the cake you told me not to touch?” Instead it says things like, “Betcha can’t hobble to the bathroom in under 2 minutes!” or “Remember how you could move your ankles yesterday?”And then there’s running errands. Imagine taking a toddler to the grocery store just before naptime. Great idea, eh? As soon as you get there, they’re too tired to walk. Or they throw a fit in the middle of the store because they’re too tired to deal and need a nap. Or they demand so much of your attention that you find it difficult to concentrate on finding the things you need and eventually give up and just purchase the things in your cart and call it a day, hoping to return to the store without the toddler, but knowing that’s not likely to happen. That’s PsA for you!Communication skills rank right up there with toddler communication as well, depending on exhaustion levels, medication levels, and whether or not you’ve been able to sleep. Pointing and grunting are a common method of communication. Some days it’s a miracle you’re able to form a full sentence. Other days you bowl people over with coherent and intelligent statements that one would hear in normal adult conversation. Occasionally you say something absolutely brilliant, but it’s usually an accident.But some days you find you have a cooperative toddler on your hands. Life is fun. It’s easy. You get down on the floor and play. You take a walk in the park. You still need a nap in the afternoon, but are able to move through your day with only the usual unsteady toddler stumbles.All in all, if you treat a toddler with love and respect his or her limitations, life can have its ups and downs, its good days and bad, its days when it’s better off not to leave the house and its days when getting out of the house is a must. The same goes for my PsA.
And I wrote this: http://rannygahoots.blogspot.com/2012/10/not-just-arthritis.html (this one has graphics/photos, and does not cut and paste well).
OK, Candi, I’ll take up the challenge! And you can pretend that you’re my dear friend.
Dear dear friend
The other day, you asked how I was feeling. Of course, I said “Fine”. What else could I say? What else do people expect to hear? If I said how I really felt, the conversation would probably come to a screeching halt.
I hurt. I’m stiff. I ache. The only shoes I can wear are just plain buttugly. I watch the clock to see whether it’s time for my meds. I’m scared, really scared, of what’s going to happen as this PsA-thing progresses. But most of all, I’m angry. I’m angry with my body: after all these years of looking after it, feeding it well and dressing it pretty it has betrayed me. My body can no longer do what I’d like it to do. I’m angry with myself: for years, I accepted the doctor’s opinion that those aches and pains were nothing to worry about. I’m angry with my doctor for not noticing some crucial signs that should have rung an alarm for her. I’m angry that I wasn’t more demanding earlier on in the diagnostic process, when something could, and should, have been done. I’m angry with my first rheumatologist for taking a relaxed approach to my treatment, while this hideous disease did more major damage. I’m angry that her misjudgement caused me to need two joint replacements. Yes, I’m angry.
And yet, I can’t let that anger dominate my life. I must move on. It’s difficult, but I must see the positives in my situation: the kindness of the amazingly expert and competent professionals I have supporting me now, the generosity of friends, and the patience of my husband, who puts up with so much from me. And I mustn’t forget that, unlike a generation ago, I have treatment options available to me which can stave off further damage. I remember my beloved mother-in-law who suffered horrendous RA until she finally died of prednisone and naproxen damage. I remind myself that the internet lets me share with others, and develop friendships and a support network which weren’t possible until just recently. No, anger will only magnify my pain, add to my hurt, and drive those I love, and those I need to support me, away.
I must try to make pro-active acceptance my new life’s theme. I must look after myself and do what I am able to do. I try every day to turn that anger into positive energy that can enrich my life, and the lives of those around me. I don’t always succeed, but I do try.
Yes, I guess I really am fine. Thanks for asking.
With love
Seenie
Candi Crivea said:
Thus was only a hypothetical question. Just to hear what people would say. Just to hear how this affects everyone so difficult. But, it didn't get to that i guess. Everyone wants to fall back on a website. It was for me to help me understand. Just trying to get a better understanding. Just didn't really want to hear about the spoons, wanted true feelings. Sorry for the confusion.
Well said Seenie. I couldn't have said it better myself. Thanks.
Wow. I don’t consider the “Spoon Theory” a fall back website. I count my spoons every day. What do I have left in me? Well, if I want to work, I can’t do this or that. If I want to provide meals for my family, I give up weekends, so that I can prepare easy things to reheat or toss in the oven. I give my kids more responsibility so that I will have time and energy to share some relaxing time with them. There are days when I don’t have anything left and I have to say no. I am constantly passing out, rearranging, and counting those spoons.
I could worry, and be miserable or angry, but what’s the point? I refuse to dwell on the negative, and I refuse to explain myself to anyone, especially a close friend. They just know. They can tell that I hurt or that I did too much, and they have the guts to tell me to go lay down or take a break. They realize how special it is to me to do normal things. Together we have all found that slowing down can be a good thing.
I’ll be honest…if I had to write how this disease makes me feel from deep within my heart it would probably mentally floor me. My true friends and partner know when I’m having a bad time with it without words needing to be said. I, just like most of us I suspect, have to just live with it and do all I can to help myself.
I choose to not explore the true depths of feeling, maybe that’s the cowards way, but I think of it as self preservation.
And try is all we can do!
Its not, you learned long ago that being victim is not a way to deal with anything in life.
I see John McCain the perpetual victim is screaming for another war. I remember asking him if he had ever killed anyone up close and personal with his own hands. He admitted he had not. I then asked him if he had been the captor instead of the captive if his perspectives might be different. He wouldn't couldn't when removed from the role of victim, he had no point of reference. Pretty pathetic actuallly.
GrumpyCat said:
Wow. I don't consider the "Spoon Theory" a fall back website. I count my spoons every day. What do I have left in me? Well, if I want to work, I can't do this or that. If I want to provide meals for my family, I give up weekends, so that I can prepare easy things to reheat or toss in the oven. I give my kids more responsibility so that I will have time and energy to share some relaxing time with them. There are days when I don't have anything left and I have to say no. I am constantly passing out, rearranging, and counting those spoons.
I could worry, and be miserable or angry, but what's the point? I refuse to dwell on the negative, and I refuse to explain myself to anyone, especially a close friend. They just know. They can tell that I hurt or that I did too much, and they have the guts to tell me to go lay down or take a break. They realize how special it is to me to do normal things. Together we have all found that slowing down can be a good thing.
Lamb,
It is something that we inflict on ourselves, isn’t it? It’s a decision that everyone has to make. Do you plan on spending the rest of your days having your disease run you? Do you choose to be a victim? Or do you decide to carry on, find your new normal, and pull yourself up by your bootstraps? Until you can manage those last three things, you aren’t really living anymore.
For me, what's coming out of this discussion is the idea that if we see ourselves as victims, and we allow the victim's anger to dominate our lives and our relationships, it will only make our pain and our existence more difficult. Everyone does cope and survive the challenges of this disease in their own way, and that choice is ours alone. Personally, I refuse to let my anger prevent me from living well, having positive relationships and being productive.
Our posts had nothing to do with you, Sybil. We got a little side tracked, is all.
Maybe I missed something? I don’t recall making reference to being victims. I for one got the most honest answer from you Sybil, and I for one appreciate it. Thank YOU got being so open and honest. Very few can tap in, I guess those who have lubed with this disease longer have made more sense of it than I have, maybe they understand it better. But I’m still trying to get a grip on it to and speaking frankly helps. People who know me understand this is not how I have ever been, tired, sleeping, in pain. It’s all new to them and since they have always known me to have psoriasis they don’t understand all the changes. I don’t see them often so they are having a hard time understanding also. Everyone wants to try to tell me I should get into exercise class, walk, don’t give in to fatigue, to get myself bust and forget about it. Thinking it’s depression, anxiety, etc. I have never before given in to pain. But at this point there’s no options, I an suffering and feel so fatigued, they don’t understand how it just comes and goes from one week to another, one month to the next. These are the things people who don’t have it, never been around it dint understand. I don’t feel we are victims, but when in a flare it’s pretty miserable. Then when not in a flare we can conquer allot more. That’s the hard part for others to make sense of. And if it’s hard for me to make sense of, I know how they must see it.