Psoriatic Arthritis Journal - 2.5 year Update Page 63

[nicoles]

Leslie, I'll be interested to see how it plays out, too! She is veerrryy stubborn, but the kind of person who resists, resists, resists and resists until you give up - and then one day, out of the blue, she makes those changes and acts like she never resisted them in the first place.

Pretty funny actually

I'll keep workin' on her, in my subtle way

[nicoles]

I do custom portraits as one of my sources of income, and as is to be expected, December is typically a busy, busy month - so busy I have to turn business away! Not complaining

Last year was the frst year I was able to do work for the Holiday rush, but it was hard, things were achey, and I was tired. I was definitely functional, doing really well actually, but still. Things seemed hard.

Well, today I was looking over my records and I realized I did as much in this past week, work-wise, as I did in the entire combination of November and December last year! This is not only great for the bank account, but a wonderful measure of how much better I am doing.

There was a time when I would not have been able to say with confidence that I was going to just keep getting better. A time when I would have conservatively said to myself that All I wanted was functionality and a lesser degree of pain and illness.

But now I have confidence. I am not hedging - really looking forward to all the ways I will improve! The improvements keep happening! They are subtle, they sneak up on me, but man, are they there!

Such a nice feeling.

[Lesliec1]

the kind of person who resists, resists, resists and resists until you give up - and then one day, out of the blue, she makes those changes and acts like she never resisted them in the first place.

I think a lot of people do that. I know my husband can ignore 3 requests to fix something and only do it when it re-surfaces as his idea.

That is so awesome that you can function more than you ever thought you would. This is what gives me hope. I am still in the "willing to settle for not totally crippled" stage.

[Lesliec1]

Question please: Which Furhman book should I try to get from the library? I need inspiration to eat more veggies. Is there a book that focuses on AI diseases that you know of?

[nicoles]

Leslie, for really getting a fire under your butt to eat veggies, Super Immunity is probably the one to check out of the library.

[eri]

But now I have confidence. I am not hedging - really looking forward to all the ways I will improve! The improvements keep happening! They are subtle, they sneak up on me, but man, are they there!

Such a nice feeling.

That is a nice feeling Nicole! I am so happy for your progress! Y'all are really giving me hope when I want to quit. Sometimes it feels like why bother if it takes so long to see/notice improvement, ya know? You just have to keep plugging along, I guess.

[nicoles]

Leslie and Eri

I can totally relate to feeling like, "why bother if it takes so long?" I can also totally relate to settling my highest goals to "just not being crippled."

I had so, so so many days and nights of despair. Real despair, I think you know what I mean - crying in bed, in pain, wondering why it has to be ME who is cut off from regular life, functionality and socializing, eating differently from everyone and with not much to show for it except more misery. And in so much pain, so tired lifting a single piece of paper is a great effort. And so alone because not only did nobody I know relate to my invisible illness, but they were all pretty sick of hearing me talk (OK, complain incessantly) about it. And not even feeling like myself - unable to do the things that used to make up who I was.

I can't make anyone stick with anything but I can say this - it is hard on the way, there is a lot of uncertainty, there is one step forward and two steps back but ONE DAY it becomes obvious that something is really changing for the better, in an amazing way.

And even still, things moved more slowly than I wanted, and there are improvements to be had. I have strengthened my patience muscle beyond what I ever dreamed possible but It. Was. SO Worth. It!

I can't wait to hear when it starts to really happen for both of you! Imagine how surprised you'll be when you wake up one day and realize you feel pretty good - in fact you have been feeling pretty darn good for awhile without really noticing it!

It is a great feeling. I believe it is in your future.

[eri]

And in so much pain, so tired lifting a single piece of paper is a great effort.

Oh, how I remember those days. It used to be that picking up a fork was too much work. The lifting & then the chewing to follow were never worth it...the aches & nausea were right around the corner. I am very grateful that is no longer my daily reality.

So alone because not only did nobody I know relate to my invisible illness, but they were all pretty sick of hearing me talk (OK, complain incessantly) about it. And not even feeling like myself - unable to do the things that used to make up who I was.

Yeah, this x1000. So much so that I don't even talk about it anymore. No one gets it. On any level whatsoever. When my gastroparesis was at its worst, I lost about 20 lbs (on top of 15 lbs from McDing) . Family members joked regularly that they needed to get gastroparesis for a few months. I don't even bother to say I am tired, b/c someone else will pipe up that they are tired, too. My tired is not your tired! Just like when I say I can't see in the dark, I really do mean I see almost nothing.

I can't wait to hear when it starts to really happen for both of you! I believe it is in your future.

That is what we are hanging on too...even when it is by a thread LOL.

[Lesliec1]

So much so that I don't even talk about it anymore. No one gets it. On any level whatsoever.

So true. I find it very isolating, which adds to the misery of just being sick. I can barely deal with relationships at all. How sad. Nicole, your attitude seems much better in this regard. Maybe I'll get there. Usually I feel like I want people to just leave me alone. Spare me the misery of trying to talk about it and getting insulted or shot down or minimized.

But Nicole's words are so inspiring. I AM at the point where I know in my heart this will work. Hard work pays off in any facet of life and it will here too.

[nicoles]

Keep on hanging on, you two! Like the saying goes, It Gets Better!

Eri - glad the picking up the fork thing is improved for you. That is one of the hardest things. Life seems just too overwhelming when things are like that.

Ugh. People can be so insensitive. I know what you mean, at least a bit - here was point when I had a weird gastro thing, no-one could figure it out, and I was waaaay underweight, and peolpe would always joke about how easy it was for me to lose weight and stay on a healthy diet, and how hard it was for them.

And I'd be like, yeah, right. Easy. And YOU have it soooo hard, poor babies....grumble expletives and insults under my breath...

One time my husband and I were in the car and I was in super amounts of pain, but this was long after the time when I would ever really say anything about it unless it was relevant (as in - I am going to bed now, because I am in pain, or NO, I can't go out, I am in too much pain.)

Anyway, my husband was just going ON and ON and ON about how it was the WORST THING IN THE WORLD to have the TERRIBLE CHAPPED LIPS he had at that moment. And I just started to laugh - I couldn't help it. In my head I was like, OOOH chapped LIPS! HOW VERY awful for you! Mister, you can take your sob story and hit the bricks.

Leslie, I could barely deal with relationships for years. Didn't call anyone, very isolated. It is only really in the last 8 months or so that this started to change. And as you can see from my story above, I did not always have a great attitude

[eri]

^^LOL at sob story! I can relate. My mother complains incessantly about her sinuses and whatever else she can think of. *smile & nod, smile & nod*

Leslie, you are so right about the isolation. Sometimes I think that is the worst. I am trying to get out of that, but it's hard.

[nicoles]

Eri, the things we do and let go that no-one even knows about...I mean, sure, sinus infections and chapped lips are no fun, but it is all so relative.

I was thinking to day about things like what you two were talking about, Leslie and Eri -the isolation and the being alone with it, and all the "what is hard about this kind of illness in general."

I guess my main thought was, do your best to avoid being hard on yourself for anything like that. Treat yourself well. Care for and about yourself. You are worth it, you deserve it and likely, since nobody "gets" it, you are probably not getting enough of it already from others.

Not many people really met me halfway when I was isolated, for example. I don't mean that in a bitter way, I mean that people don't know, and so we expend more energy for less results, if that makes sense.

Being sick is really tiring. And we are/were/are coming out of being really sick. No need to add crap on top of the crap already dumped in your lap.

I was noticing myself doing this lately - Superwoman-ing through the pressures of the Holidays, and lapsing in self care. I am still eating fine, but I have not been resting and stretching and relaxing adequately for me.

And I kept adding mental pressure on top of more mental pressure, until I woke up today not feeling great. Maybe a little sick, but definitely physically uncomfortable. Not in the joint-pain way, exactly. Just "off."

And I was thinking back on how MY WHOLE LIFE I always seemed to have less stamina than others. I always needed "a lot" of sleep or I was in trouble; I would "get sick." And always notably different from other people. And I got a lot of slack for it. Friends would get mad if I was not up for stuff. Parents would give me pressure for "resting too much." Society, school, jobs were always pushing doing, doing, accomplishment, accomplishment, and I felt like the only way to keep up was to ignore my physical limitations and warning signs and create an internal drill sergeant in my head who would Tolerate No Slacking. You Rest When You're Dead, sort of thing.

Now, looking back, I wonder if I always had a bit of this autoimmune stuff going on (but since I only ever knew life as that, how could I compare?) and I really needed that rest. I'll never know for sure, so I can choose to believe that or not, I suppose, but what I can do is right now learn the lesson and take good care of myself as I am, not how I think I should be.

[moonwatcher]

Wonderful perspective, Nicole, and so important. The healing powers of rest are so thoroughly ignored and/or denigrated in our culture--even vacations have to be filled with excitement and activity--that what you say about giving gentle care to one's self in the face of all that isolates is just so essential. You are right on the money, honey!! At least in my book! Glad you're able to notice what another friend calls "holiday undertow" and find ways not to go completely under. Thanks for your wise words and experience.

xoxox

moonwatcher

[nicoles]

Thanks Moonwatcher! Glad to hear a little extra validation - I am talking to myself as much as Leslie and Eri in that last post.

[Lesliec1]

What an awesome post! So many things speak to me.

Superwoman-ing through things? You got that right! I can't say no to anyone so I end up doing so much that is physically difficult plus I bet I resent them for it deep down. (Stupid me! What do you get from being such a sucker and trying to please poeple? People don't like you any more for all the giving, that's for sure.)

My whole family has always been low stamina. I was always kind of ashamed of that. My husband comes from a family of crazy go-getters. Maybe you're right about having problems from way back when. Super interesting.