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Posted 11/30/2010 9:36 PM (GMT 0)
As I'm sitting here, I can't say I'm in any more (or less) pain than I've been in for the last year or two - which is frustrating but something you ultimately have to live with when you've drawn the short straw, genetically speaking.

However, for the last few weeks, I've spent half the time convincing myself I'm not really ill, and it all comes down to weakness of character, or laziness, or whatever, and the other half of the time basically feeling sorry for myself. Sometimes I look at my life at the moment and think I'm doing OK to have so much going on, and to be keeping the plates spinning, as it were. Other times, it's as though it's not me keeping them spinning at all, and like I'm just a passive observer, getting further and further behind. Basically I feel I've lost all perspective on reality in terms of what needs to be done.

Sorry, I've not found a very clear way to describe what I'm trying to describe - but I think what I'm getting at is an ineffable sense of malaise and lethargy. Simple tasks seem extremely daunting, even if pain is not a barrier - and I just don't understand why I have a problem coping if I'm not in pain. I realise this is probably far more to do with Fibromyalgia (or whatever the hell it is, Chronic Fatigue Syndrome, Chronic Myofascial Pain, Myalgic encephalomyelitis, I seem to match the criteria for a different one each day) than Rheumatoid Arthritis, but I don't really know the folks in the other forum, and I think I just need to rant.

It feels like my IQ is being severely bottle-necked, and thought processes that used to come naturally to me now seem way over my head, and I'm not entirely sure what to do about it, but it certainly looks like a career in academia is going down the pan. I worked non-stop last night through till 9:30am, and at the end, I had achieved absolutely nothing - no closer to ticking a single item off of my to-do list.

So basically, I was just wondering what the hell is wrong with me, that causes me to feel indescribably terrible despite no physical issues (apart from a now reasonably well controlled inflammatory arthritis). I think I just want to know if anyone can relate to these non-sensical ramblings, or am I just going mad?
Posted 11/30/2010 10:26 PM (GMT 0)
Why is it that this society that things have to be checked off a lists...
your a person having a bad day, not someone needing to check something off a lists.
In the CP forum we'd tell ya rant away, as we all have these days, it's not
something any of us want certainly no but, with pain our lives get turned upside down
in so many ways..I do believe that with the chronic pain
we all have or go thru stages, 1. denial, 2. depress on thru to acceptance (sorry I forget about the order)
and none of this is help by the way your being treated by your
doctor's, I sure wish you'd come over to the USA for proper treatment, but even here
we have good and bad doctor's...
I hope your feeling better soon.
(((((((((((((((((((((((((((((((((((((((((Jay)))))))))))))))))))))))))))))))))))))))))))
Healing hugz and anytime you need a shoulder to lean on use mine.
Posted 11/30/2010 11:57 PM (GMT 0)
James, you just sound depressed to me! Another typical side effect of dealing with chronic pain!
I go through real low spots sometimes where you just feel so overwhelmed with everything.
I've tried 3 different psychologists, one was into hypnosis, one was into a mind body awareness and the last was more practical based. I only saw each one for 2 or 3 visits. But what each one helped me with was acceptance of having this disease and the realisation of the fact we grieve for who we were or what we've lost.
None of them was quite what I was searching for, the best help I've had was from doing the course on RA offered by the PM clinic at the hospital, knowledge is empowerment! They believed if we had knowledge it could empower the patient, sort of thinking. Sort of take more control of your own treatment. They also taught me relaxation techniques to help with pain, setting small goals for each week, lots of practical help with tasks and heaps of info on drugs and strategies. I'd actually love to do it again, because they gave you so much information that I couldn't take it all in at the time. Plus meeting other young people with the disease helped me too, I've bumped into some f them since and its like meeting long lost friends.
So I guess what I'm saying to you is it might be time for you to reach out and find out if there is any help in your community. I went along to most of these things very half heartedly, with no expectations of any help at all. I guess I was pleasantly surprised.
Its so easy to get depressed with RA, you're certainly not alone, go and talk to your GP about it. They might know of something locally. Plus I can't believe how much my hydrotherapy has helped me. My rheumy told me its as important as taking medication. Its really helped build my strength and my fitness. Maybe something like that may give you the lift you need?
Enough , I've raved at you for too long now. But I know what its like to be so down and see no way out.
Best best wishes, golitho
Posted 12/1/2010 12:47 AM (GMT 0)
Thanks for the replies guys, Charteaux - it feels like this bad day has been going on for about three months, and believe me, I'm not staying in this country any longer than I have to, I despise England and everything it has become, especially since the farce which was our last election (The party which came last is now in Government, shared between a Far Left and Far Right party, as no majority was reached...)

Golith, I too have tried hypnotherapy (my father used to work at a doctors practice as a hynpotherapist/psychoanalyst), I daresay results are not conclusive! I guess the main problem is people just don't believe I'm ill because I don't walk around moaning constantly - I save that for here ;)

I've just decided to say **** it, whatever happens, happens, I'm job searching in Europe atm, even considering Africa for a while (housing + food in exchange for charity work).

I have been to my GP, who told me there was no miracle pill (I didn't ask for one), and refused to prescribe anything as it "wasn't standard protocol". I was literally in tears in the doctors office, and I'm a 6'2" night club bouncer! I was practically begging for just enough valium (or similar) to see me through a week and give a little respite.

The thing is, my pain is relatively bearable (most of the time), with Tramadol and what not, it's just this ineffable sensation of malaise which I cannot describe without using perhaps 3000 words! (and I'm usually good with words!)

Weeks seem to be passing like days at the moment, I'm just not aware of time going by. I must be doing something though, my bank balance is staying largely in the black, but it still feels like I'm running on a treadmill and just not getting anywhere. I've built up a solid reputation in my area as being able to build/design

I guess I just need to break state, the only problem is that I should be getting a 1st in my degree (final exams ever first week in January, and a 1st is England for a 4.0GPA, I think) but at the moment I'll be lucky to even be graded... so frustrating that this piece of paper determines how the rest of my life unfolds, and yet seems to hang on just a couple of weeks work.

What's worse is that in my foggy state of mind, I lost my drs note for illness, so I can't even prove it's legitimate, or go back, as he's in a different county (english for state, only a hell of a lot smaller), and we're currently under very heavy snow!

In desperation I've just finished a codeine cold water extraction on a box of OTC painkillers, which has eased my state of mind a little, along with the pain. (Although as I've said, it's not even about the pain any more, but it should help me sleep, and I'm fresh out of my indian somas!) - I'm beginning to feel a little bit like a pill head, but I don't really see any other way of dealing with this crap.

Anyway thanks for letting me rant, and I hope I'm not bringing people down!
Posted 12/1/2010 3:10 AM (GMT 0)
I don't know Jay-I call what you are experiencing an RA funk. I go through them often. I know exactly what you are saying. Feeling guilty because you aren't in enough pain to complain. Feeling tired, tired of everything. No motivation. Doing plenty but feeling like you could have done more. Brain so foggy sometimes you can barely find the words you need to speak a sentence. I'll be at work reading someone's email to me or being in a discussion with several colleagues and me who was always a bright person and very articulate cannot grasp what they are talking about. I am standing there terrified someone might ask me my opinion. I don't know what it is. Just the other day I was at my GP's for my yearly physical. She told me she is so glad my RA is in remission because I had been quite a mess. She compliments my skin, my weight, etc. Yes I am glad I look so well but it's hard work to look this way. I push myself to exercise even though it hurts and I am tired. I am just plain vain. As I sit there "looking healthy and well" it feels like a little nome is roaming around my body hammering with his tiny hammer knuckles, wrist bones, ankles etc. I don't say anything to her. I don't dispute my "remission". I give up. It sounds ridiculous but sometimes I think it was a lot easier when I was so sick I looked ill. Then I didn't feel guilty for the things I don't feel like doing now. People validated how I felt.
Honestly- I am no slacker. I go go go for the most part I give 110% at all times. Except these RA funk times and they happen more frequently then I like.

I hope you come out of yours quick Jay. I know you are a very smart man and you will achieve great things. Give yourself a little break. Don't give up. I was surprised to hear you say you'll be lucky to be graded let alone get your degree.

Can you call your doctor and explain your plight? Perhaps he would be willing to mail a letter or phone the school.

I wish you all the best.
Posted 12/1/2010 9:59 PM (GMT 0)
Jay, I have been experiencing a lot of what you are feeling too. My house is a complete mess, and I tell myself in the morning that I will start cleaning it, and then I will look at the living room and just get completely overwhelmed. Then I end up sitting on the couch staring into space for a while or petting the cat.
I feel like I am losing my intelligence too, I can't understand things that I used to, I can't explain things like I used to. I am the "Human dictionary" and people all the time used to ask me what words meant, and I could tell them. Now my 7-year-old will ask me what a word means and I can't think of the definition! Plus, when I type now, my fingers get all scrambled up and I am constantly having to go back and retype things I have misspelled, so typing something takes twice as long. I cannot remember anything anymore, even if I make an appointment in the morning for later in the day, I have to write it down!
I have suffered from depression all my life, but this feels different. It really is, as you said, "an ineffable sense of malaise and lethargy". There is just an incredible lack of motivation to do anything. I don't know what the answer is! I wish there was some kind of medication to deal with the fatigue!
Posted 12/1/2010 11:34 PM (GMT 0)
The snow sounds really extreme in England, -18 or something they said on the news the other night! No wonder you feel blue! I'd be wrapped in rugs incapable of moving!
Sorry I'm just being silly.
Just keep talking about it, rant here, rave at your friends, get it out and in the open. Sometimes you just have to explode with it all. It was one of my such rants that put my doctor on a mission to help me.
Sometimes you just need to find that right person.
But exercise is good, lifts your spirits, try and find a physio who deals with RA, under water is best but I'd imagine hard to contemplate in the cold.
Just keep putting your best foot forward and sometimes just take a day at a time or even an hour at a time, rather than being daunted by the big picture.
We all feel it, exhaustion, tiredness, its part of that wonderful RA package. I still need my naps most days. I think of being able to work full days with no worries as a distant memory now. I just have to manage and pace myself, its that pacing yourself thats so hard to deal with...hang in there James, golitho
Posted 12/2/2010 1:02 AM (GMT 0)
You are not alone. I can totally relate to nearly everything you describe, feeling like I'm losing brain cells every day, easily overwhelmed, in a mental fog, wondering if I'm fooling myself & I'm just being lazy, like I should be able to just muster up the mental and physical strength to clean my horribly cluttered 1-bedroom apartment (when I used to keep a spotless home), I should be able to take the box of file folders I bought 3 months ago & just write labels on them and file the paid bills and health insurance paperwork piled all over my desk and coffee table, and I just haven't been able to force myself to do it, so sometimes I feel like I'm just a horrible, lazy person. Well, I'm not-I'm a sick person, no matter if I look good or don't have much pain, I'm still sick and I need to cut myself some slack.

I'm on antidepressants because I've suffered depression since I was 14, and they keep me from becoming suicidal, but this weird mental malaise that began after I was diagnosed with RA is not something that responds to any psychiatric medication I've taken yet. I clearly need the anti-depressants, and they help me to some degree, but a lot of my mental crap-and judging from the posts it's pretty common-just comes with the territory of having this insidious disease that's doing God knows what to my immune system & brain even if I'm not actively flaring or not having that much pain. It's beyond frustrating, because I've had times when I felt almost normal, and then symptoms return or I get an infection and it feels like the rug has been pulled out from under me & all my progress doesn't amount to a hill of beans. But I digress. I'm really trying to be helpful and show some empathy because it looks like we've all been there.

It probably wouldn't hurt to be evaluated by a psychiatrist (or whatever they call them in your country) for depression, because if it lasts longer than 2 weeks, it could be a chemical imbalance in your brain & proper medication could help immensely. From my experience, though, it only helps so much. A lot of these crappy feelings are situational, due to the RA and the limits and all that, and I deal with it as best I can by ranting here, where I'm understood, telling myself it's temporary-I won't always feel this way, journaling, sleeping, and when I'm up to it, going out to lunch or coffee or the grocery with a friend, being careful not to unload too much information about my health, because as much as my friends love me, they just don't understand this disease. This site has been a lifesaver for me. I truly hope you start feeling better soon!
Posted 12/3/2010 12:20 PM (GMT 0)
I sit here, reading all of your stories, and they're MY stories... I had so many "wow" moments reading all of your experiences. I'm not alone. I have tears in my eyes.

"...people just don't believe I'm ill because I don't walk around moaning constantly" <<< that's me! and Weary's comment about it seeming easier when you LOOKED sick... I so get that.

There have been so many times when I've wanted to jump on here & vent, or ask a question (or a million), or make a comment, but I haven't. I have always been a lover of language and, in the past, expressing myself through writing has always come naturally to me. Now I can't seem to make the connection between what I feel and what I want to say, let alone put those thoughts in words.

So thank you for starting this thread, Jay. And thank you everyone else for making me feel less alone.
Posted 12/3/2010 7:28 PM (GMT 0)

Melttdown,  WOW is exactly what I kept saying as I read all of these comments! 

I try to explain how I feel to my husband sometimes and I just can't find the words to describe it.  And when I describe it to the best of my ability its obvious he totally doesn't get it.  I know all of this too well.  I have actually felt okay for the past 2 weeks.  I took a vacation from work and stayed home to try to get things caught up at home and to take a little time for myself to get some scrapbooking done.  All I kept saying leading up to the vacation time was, "I just hope I feel good while I'm off work so I can get something accomplished".  I seriously think sometimes that people think I want sympathy but, I don't want sympathy at all...I just want to feel NORMAL!

I can totally relate to Weary's comment about it seeming easier when you LOOKED sick, Lady Writer's comment, "wondering if I'm fooling myself & I'm just being lazy".  I question myself constantly.  I can also relate to Moggy's comment, "My house is a complete mess, and I tell myself in the morning that I will start cleaning it, and then I will look at the living room and just get completely overwhelmed.  Then I end up sitting on the couch staring into space for a while" or taking a nap.  And also her comment, "when I type now, my fingers get all scrambled up and I am constantly having to go back and retype things I have misspelled, so typing something takes twice as long. I cannot remember anything anymore, even if I make an appointment in the morning for later in the day, I have to write it down!'  I've even set reminders on my phone that go off and I turn it off and still forget to do what I had the reminder set for.  I definately feel that I am slacking at work.  How do you, so-called, "sell yourself" on your self-assessment worksheet at work in order to get a raise or at least keep from being demoted?  about 4-5 years ago I was able to self myself so well that I was promoted, placed in a different paygrade and put on salary.  I was so happy and did so well for a while but, in the past 2-3 years I think I have declined.  And it seems to have really gotten bad over the past 6 months.

Anyway....All I can say is I can definately relate to everyone here!  And I hope and pray for all of our sake that we can have more good times than bad.

My thoughts and prayers are with you all.

Jen

Posted 12/4/2010 12:55 PM (GMT 0)
All-

I am wondering why we all have these...OK I'm having an episode now of not being able to put into words what I am trying to say. Lapses in intelligence (?) Does RA make us turn stupid?

In the past I have been making excuses for myself like it's the MTX or that it's not RA at all- it's my age or maybe it's menopause symptoms. However I now feel validated that so many other RA sufferers are experiencing this same thing and only since they got RA. I see that we are young or old. Not everyone is on MTX so what the heck is it???????s.

It's very scary to me. it's also frustrating and embarrassing. It's this emotional side of RA that brings me down the most. Thank God I don't have that awful onset like pain that some of here who are med resistant live with daily- and I hope those who do forgive me for my thoughts of "it was so much easier when I was very ill". I was so surprised that several of you admitted to having this same feeling- I always felt so guilty and maybe crazy for having that feeling.

That's why having this forum is such a great thing. I feel so much better after I've been here as opposed to leaving an appt. with my RD. He may be a specialist who has been at this for many years (he must be in his 70's) but he just doesn't understand. He's my 2nd. The first one was 100 times worse. We have to remember that only 1-2% of the population in the US have RA so these RD's still don't have all that much experience with us. They treat all types of rheumatic diseases. Plus if you don't have RA- you can't relate-you just can't.

I just wanted to say I also get the guilts about "am I just being lazy" or do I really not feel well enough to carry on my tasks. I should know myself well enough by now but I am so hard on myself. I am also swayed by other peoples opinions -hence you look fine what the heck is your problem. :(

How are you Jay?
Posted 12/11/2010 9:43 PM (GMT 0)
Hi Jay,

Please know you are not alone! I have had more of these days than I used too. I used to be more optomistic, however I think as I get older and I'm faced not only with the RA, but with my stomach disorder Gastroparesis, watching other people eat normal food on a daily basis, it just really gets me down, and knowing I'm going to be this way for the rest of my life. No cure for RA or GP. I spend many days feeling sorry for myself when I'm alone, wondering what I will be like at 50, 60 and so on. Quality of life etc. However, I have to put on a smile and pretend I'm *normal*, go about my daily business, and even for the most part pretend I don't have RA or GP, because most don't understand, and it is too exhausting to even try to explain. I've had many discussions about holiday meals and what my *favorite* food is, and what kind of workout I do to work off the extra calories. In reality I don't have a favorite food, and I don't eat enough to worry about extra calories, and workouts are a thing of the past.
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