bothered

[acker]

i saw a fellow running up the stairs to get to the busway and I see this all the time and think 'lucky thing, wish i could do that' - but today it really bugged me, as i tallied the years - 3 - and i thought will i ever run again? what if i never run again? this is heII. (diagnosed cfs)
i could run say maybe 40 yards -not even very fast - but it might be 4 days to recover from fatigue and tire. - so that's not worth it. just getting despondent cause it seems so nightmarish, and most hurtfully i feel
people don't understand ! :(  !
i appear healthy and not elderly by any means, thus it can present as malingering, or really bad acting!, and i'm just feeling like it's been prison.
there's been brightness and goodness at times but most of it has been very discouraging and generally heIIish...
just venting and also sharing in hopefully a safe environment. i would just like to scurry after a bus some time, or bound up some steps occasionally. im grateful for the mobility that i do have, and general absence of pain when i'm not doing anything(!), but just struck a bit of a downer today. i mostly 'live with' the conditions of my 'new normal', i just had a sharp memory of the old, this afternoon. sigh. bothered.
united,  

[namnam46]

OOPS!! Acker so sorry, I had you mixed up with someone else as far as the PM went. Just didn't want you to be confused wondering if you had lost your mind or something about the PM.  :) I'M  the one that LOST her mind, NOT you!!!   LOL

I sent you a Friend request.....Sherry

[namnam46]

I'll make you a deal. Since you are afraid to invest much hope for full recovery, I'LL concentrate on hoping for a full recovery FOR YOU!! How's that!! I'm VERY good at hoping for GREAT outcomes for my Friends!!

EVERYONE here cares about each other and we ALL support each other. You have DEFINITELY found the RIGHT FORUM because we ALL care about you and are VERY glad that you have found us.

I want to thank you for you PM to me. I really appreciate you kind words.

I hope that you are able to have a REALLY nice weekend. (I ALMOST wished  you a Happy Independence Day  but forgot that you live in AUSTRALIA!!  LOL) It's one of the Holidays that is ONLY an American Holiday. However, I'm STILL going to wish you a Happy 4th of July as you ARE having a 4th of July today!!  :)

So good to hear from you and HOPE to hear from youagain VERY soon....Sherry

[Tuckamore]

I am late to this discussion and I apologize for that....I so know what you are feeling. As I have gotten older it's gotten better...but I remember the early years and they were very emotionally painful. My heart goes out to you.

I was an active softball player (3 leagues) and a Co-Little League Couch when my sports car was struck head on by a loaded dump truck. Winter time found me in many other physically challenging sports activities...all of which I loved. The severe and multiple injuries I sustained stopped every activity. I too would look at someone running or drive by the softball fields and wish to dash somewhere again. Determined, stubborn and in denial I tried to return to some of my pre-accident activities. It was impossible.  

I too feel trapped in the body. It has deceived me. The anger is gone for the most part. I am happy to be alive....but it doesn't stop the longing some days for the life I could have had.

Initially I was diagnosed with CFS and than Myofascial Pain Syndrome which were new diagnoses and they knew little about them. Most physicians felt I was malingering or a drug seeker. You are SO welcome here. I hope you will share with us your on-going feelings and vent any time you want to ...sometimes it helps. We all know to some degree what you are going through.

Every now and again I dream I am running bases. I wake up and realize I have trouble just walking. At first those dreams made me angery, now I welcome them. I can run in my dreams. :)  :)  

Please come visit us again our friend in chronic pain. We are here for you.

Take Care,
Tuck

[RunningMom]

I completely understand how your feeling.  I use to run 36 miles every week before I injured myself.  Now I can't even walk around the block without going into severe pain thanks to my neck.  I do from time to time envy those who are not in pain.  However, I do try not to think about it.  It puts me in a depression and then I start to feel worthless and I wonder why my family has stuck by me.  I feel trapped in this body.  I've gained a bit of weight and I can not exercise to get it off too.  I must stay resting at all times, or I pay the big price of unbearable pain.  I have a spinal cord injury in my neck which is also causing muscle spasms.  I don't know if there will ever be a day that I will be pain free.  It's looking a little grim.  

[acker]

thank you for UNDERSTANDING!! :) feels better already. I was just wigging out and fretty. sorry tardy response- was crook. diagnosis is cfs. the first year was sheer fatigue and thankfully very little physical pain. but the last 2 years have been muscular pain. the best thing for it, for me, is resting, which is helIish for anyone. no medication, i guess it's the kind of pain that helps me gauge what level of activity i should be at. thankfully no headaches. just bone tired and somehow this is painful. difficult to describe. I'm hopeful for full recovery but also sometimes doubtful or at least not investing loads of hope into the thought, because i have been disappointed too many times, i just go along with it (except for last friday :)  )
fortunately there has been improvement so this is in the right direction...
thank you for understanding :) i feel less alone
hugz etc

[namnam46]

Hi acker,

I'm glad that you wandered over here to the Pain Management Forum and I wan to welcome you!!!  I'm sure you already understand that there are NO Doctors on here. JUst us CP (Chronic Pain) Patients who share with each other.

I'm so VERY sorry to here that you suffer from Chronic Fatigue Syndrome. WOW you have it REALLY tough as SOOO many people just don't understand CFS.  Bless your heart, you have found the RIGHT FORUM here!!!

I feel so sorry for you as there isn't a medication that I know of (maybe you do) that helps you to get back your energy. How do you do that? We who suffer from CP (Chronic Pain) at least have a CHANCE at getting SOME of our pain relieved but you don't have much to look forward to.

What is your outlook as far as the disease goes with you? Do you have any meds to ehlp releive that pain in your joints? Or are you having any pain in your joints? I know that not every CFS patient has the same symptoms.

We are here for you and I hope and pray that you will be one of the 5% to 10% of CFS Patients that make a FULL RECOVERY!!!

I will be looking forward to your updates and hope that you will be an active member on our Forum.

Best of Luck.....Sherry

[mellie4]

I'm glad you found this forum.  It's a great place and has helped me have a greater understanding of managing my own pain issues.  Even though it's only a patient forum with no physicians, I find I sometimes get more information here.

I'm just wondering, if you're comfortable sharing it, what your diagnosis is?  There's such an array of conditions here, some I'm familiar with and some I'd never heard of.  I read some and think how can I possibly complain, but the truth is we all have our limits and down days.  Some of my worst days aren't even the days I have the most pain.  I sometimes think some days when my pain is somewhat moderate, I become even more frustrated.

Maybe it's because when it's a REALLY bad pain day, I don't feel guilty for just sitting around in sweats and not doing much.  

I'm glad you have an empathetic sister!!!  My sister is good in a crisis and an emergency but not so good in general.  She'll drive me to a surgery, for instance, but drop me off at home after.  Where if it were me, I'd be throwing in a load of laundry, giving kids dinner, etc.  But that's not her and won't ever be.  She doesn't have a high tolerance for people who have any type of problem.

[acker]

yes! wouldn't wish it on anyone except so they could know what it's like! bummer abt your sister cause my sister has been very good, and it's surprised because she's never had a sick day in her life (like me, before I got sick); don't know if i'd have that amt of understanding myself w'out the experience. thanks, take care  

[acker]

i'm new here. thanks to invite from a member here. i would say i'm in continual discomfort more than it is pain, which ranges from general feeling cr^p when i'm not doing anything physically, to all-over (muscular) pain when i move or walk or am in recovery from moving too much. over the past 3 years it has improved from unlivable to livable. and the improvement seems to have stopped. the discomfort is not 24/7 if i micro manage my day. it comes and goes and i could safely say it's nowhere near the severity of many of the posts i've read here.      

[mellie4]

I can definitely understand how you feel.  Malingering.  I haven't thought of that word in a while!  But that's exactly what I feel like my sister thinks.  Sometimes I just feel like smacking her.  She is not good at hiding what she thinks and feels.  And I wouldn't wish this on anyone, but every once in a while I wish she could do my life for a day.

We all have our days when we feel particularly down.  Hope yours gets better!