Dealing with frustration

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pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 10/31/2006 2:41 PM (GMT -6)   
How does everyone deal w/frustration re symptoms and diagnosis?  Thought I was doing good until yesterday.  I know my symptoms of PVL mimic MS (gait, cogn. thinking, fatigue, etc) and they will never go into remission.  My condition is apparently rare and my neuro MD has taken a "wait and see" attitude.  My symptoms seem to be worsening (esp cong thinking) and after I received a cc of the last neuro visit to give to my primary MD, I became so upset that, for the first time since diagnosis, I felt like I was losing the battle.  It wasn't anything in the report that I wasn't aware of and accepted, it was the discrepancies contained in the report.  The MD stated that I had no heat intolerance and experienced no visual changes.  Boy, was this incorrect!  I thought summer would never end and the heat constantly exacerbated symptoms.  I lost count of how many times I missed the last few steps thinking I was at the bottom.  He is a professor at a med college and the residents get to use me as a guinnea pig (don't really mind since we all have to be students at one time or another in our lives).  Apparently there was miscommunication between the resident and the neurologist.  Getting a response back from them is the kicker ... almost never returns calls.  I fell twice w/balance problems before being able to secure earlier appt.  I still haven't heard from his office if the matter was corrected; still have no idea what my prognosis is; I do know there is no tx at this time for PVL.  There is little on internet re/PVL except in infants; only what it is, not the causes or prognosis for adults.  The CD HealingWell.com sent me is very soothing, but I "lost it" with a man in the library yesterday who was sitting at the computer next to me (my son was using our home comp) and kept crunching (VERY LOUDLY) hard candy. nono   I left before I could "verbally correct" his rudeness.  I'm used to working w/small children (asthma management), so little things like this never usually bothers me.  Big things like still putting my house back together, etc doesn't bother me ... I take it in stride, but I can't figure out why I became so upset about the man at the library.  Any suggestions on dealing w/small stuff in public?  At home, I have peace.  Thanks for input! yeah

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 10/31/2006 4:15 PM (GMT -6)   
Hi Pegleg,
 
    I have a few thoughts to throw out there, if they help.  It seems from what you've said you can handle quite well the things you are used to dealing with but throw something new in there and you have problems.  When you are not feeling well, or dealing with issues you can't control it's pretty easy to get upset about things, even if they are small ones.  Removing yourself from the situation as you did was good!  Sometimes taking a short break for yourself helps tremendously to allow you to regain focus and deal with things better.  Good luck with all you are dealing with, please keep us informed.
 
 
 
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snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 11/1/2006 2:35 PM (GMT -6)   
Hey Pegleg,

Unfortunately, MS and other diseases like it, have many symptoms that are alike. One of the most
recognized besides the exhaustion is a quick temper and a trigger called Stress/Frustration. It is like the depression
or wave of emotions that come out of nowhere. I was warned by a high level executive that has MS, that the day would come
when I would take an employee's head off, or scream at everyone going home, or just by attitude and
words destroy a great activity with the family.

He was right. Luckily it wasn't my family that got the wrath. But it did come out of nowhere, and to a guy that is usually very patient,
it was like a gun shot!

There isn't much you can do about it, I was told.....except Anti-Anxiety or Anti- Depression pills can help take the edge
off before this kind of thing happens. Also, getting as much rest as possible and perhaps meds to take care of symptoms.
The more exhausted you feel, the harder it is to deal with symptoms or other annoying things like stress or frustration. So if you can get
lots of rest, fight the symptoms with meds...you will feel better and not so explosive. Add a AA or AD pill for awhile
and you quiet that temper that seems to come from nowhere.

Does this completely overcome this tricky area? Not completely. But I speak from experience that it does a pretty good
job. I watch my exhaustion level closely, I do take an AA/AD pill everyday, I fight the symptoms with what ever is needed,
and I try to stay focused on what's important in my life and by doing so, keep my stress and frustrations in line. My wife
taught me to "pick my battles or my frustrations" Most are not worth the effort and not important. The ones that I think are,
I sleep on before I get angry or leave the room or the area and catch my breath. You will know when you are there, and
as Kimber said: " Sometimes taking a short break for yourself helps tremendously"

Good Luck and hang in there. We are all learning to cope together and together we learn to fight this disease called MS.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/1/2006 3:12 PM (GMT -6)   
Hey Pegleg

Going thru all that u'r going thru is very frustrating. Even for a well person, this much stress would make u blow up from time to time, but add to that the enormous load of not knowing exactly what's going on and it can become a powder keg. I think we all find ourselves in this place from time to time...myself included. Unfortunately the wrath comes and there's no going back. All we can do is try very hard to not let it affect our personal and work relationships to the point we can't recover. There are meds to help with it and one is cymbalta. I sing the praises of this med often enuf because it's what i use and seems to help so much in my overall symptoms. I suspect it helps keep me more evened out as well. Even still tho, u'll find u'rself exploding from time to time. Take time to u'rself and as Kimber said, remove u'rself from the situation if u find it's feeling stressful. I am home alone all day and it's wonderful. When my girls get home from school it's such a drastic difference and so chaotic that i find myself very irritated quickly. I see a difference in myself. Even in visitors coming to my home. I've always been a people person and loved and even craved time with others, but lately i find that i really do prefer to be alone. People can come and irritate me quickly. Take care and try to find some time just for u'rself daily and remember those time outs and use them often! Maybe explain this to u'r family as well and let them know it may be coming and isn't personal if it does.

rhonda

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 11/2/2006 12:14 PM (GMT -6)   
Dear Rhonda & Snowdog:  I'm in a much better mood now.  I fell down the last few stairs at my house that day and hit my head on the wall (headache was compounded by this man's crunching ... whoever heard of eating hard candy in a library!), the neuro sent the wrong report, etc ... all in all, a day I don't want to repeat.  I had my occupational therapy appt which went great (by the way Bed, Bath, & Beyond has a lot of great gadgets to make housework easier).  Today I had my first physical therapy appt.  :-) I know what I'm looking at now and how to at least start putting my life back together.  I still have only 5 MS lesions on the brain, but neuro now thinks it's more, but the one solid diagnosis is periventricular leukomalacia.  It mimics MS symptoms, but will never go into remission.  It usually always affects infants and there is very little info out there, except for the same thing that is listed for infants is what my life is now about.  There is permanent damage to the white area of the brain resulting in dead tissue damage.  I will always have the weakness, fatigue, imbalance, and cognitive thinking problems.  I just have to learn to compensate using the right side and using learning techniques to help with the thought process.  I knew the evaluation wasn't going to be good, but I guess the physical therapist didn't know much until he finished.  I came in the bottom 10% of use on the left.  I guess I can fool a lot of people.  I practiced my walk until you can't really tell.  My BIG problem is balance.  Let's just say that if it wasn't for my cane, I would be arrested for "drunk walking".  tongue Starting Monday, PT is working one-on-one with me 3 days a week.  By the holidays, I will the person looking sober without a cane! yeah tongue   He wants to give me a cc of the report to send to SS Disability.  Thanks for ya'lls input.  I try not to worry my hubby if at all possible.  He has a lot to deal with since the hurricane, my problems, and our only g'child was diagnosed with ALL (leukemia) the end of May.  She is doing great, could care less if she has no hair, and is responding well.  She has an excellent chance of full recovery. yeah tongue tongue   I have always been the "rock" of the family and I guess it's a little scarry for my hubby to see the "rock" chip a little.  I'll still shout my independence until my last breath even if it means loosing balance, getting lost, etc.  Life just wouldn't be fun without adventure!  Thanks again! yeah tongue

snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 11/2/2006 2:33 PM (GMT -6)   
Wow....PVL. Talking about unusual !

Even Rocks can crack if enough weight is put on them. I hope you have a hobby, or community project,
or something that makes YOU happy, gets you away from the house, hubby, the kids, etc. And share
Pegleg, take some of that pressure off before you don't just chip.....you will break all together.

As for the cane, shoot.....I have a fold up cane in my briefcase, in my car, at home, even on my motorcycle.
My doctor tells me that sometimes I will walk fine and other times I will be a drunken salior. Made me wear
a Med necklace that says I have MS so if I get pulled over, the cop will know that I don't drink.....

We are all pulling for ya. Stay in touch.

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 11/2/2006 6:12 PM (GMT -6)   
Snowdog:  Thanks for the reply.  I think I'll get another cane for the car, so I'll always have one around.  Since I'm not working now, I have more "me" time than I care to have.  I tried cross-wd puzzles,etc. ... just not for me.  I always end up back in my medical books.  I'm used to doing health fairs, working w/pts on asthma mgt, etc.  Respiratory therapy is my second career.  I have a degree w/emphasis on business mgt and another one in respiratory.  I've only been in resp for about 6 years.  This was the career I've wanted for a long time, just didn't think it would end so soon.  Will always stay in asthma education, but no wk down here for this.  All my wk is volunteer.  That's okay, though.  I know I make a difference when a pt tells me "Thanks, no one ever told me that!"  I deal w/new med occurances w/no problem, it's just the little rudenesses of people that tend to get to me.  I guess I've watched a lot of people die.  Oncology pts taught me more than any book ... always give a kind wd whenever possible, take time to say hello to a stranger, value life and cheerish God, family, and the simple things in life. yeah Take care!

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 11/2/2006 8:36 PM (GMT -6)   
Hello Gracie's Mom: Thanks for the advise, but after a lot of research and pulling my old med records & MRIs, I guess I have to agree w/MD. The damage is permanent. PVL is usually dominant only in infants, but occasionally an adult is found to have this problem. It mimics MS symptoms but PVL has no remission and there is no tx available at this time(I still have 5 "MS" lesions ... another MRI in mid-Nov to see if more and then will be diagnosed w/MS and PVL). One thing about the human body, if given a chance, the "good" areas will compensate for the"less than normal" areas. The brain is a remarkable organ. My rt side compensates for my left to the degree that I fooled everyone at work (12 hr shifts @ hospital) for a long time ... until congnitive thinking issues arised. I guess it's true, if life gives you lemons, you simply make lemonade! I love the jokes in Reader's Digest Magazine as laughter is truly the best med! Just think of how you feel after you laugh! Be careful of UV light tx, I've seen too many die from skin cancer. Thanks again.

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 11/6/2006 4:20 PM (GMT -6)   
Hey Gracie's Mom & Snowdog:  Things seem to be getting better.  I started physical therapy today.  I requested we concentrate in the beginning on imbalance, especially since w/imbalance there is always a great risk of falling.  The stairs are no problem for me since we live in a 2 story house, but walking toe-to-heel was something else!  I looked like an albatrose coming in for a landing! tongue   yeah I found that by concentrating on each step, I became a little more balanced.  Now to do it without such a concentration effort.  Then we had a giant ball which I sat on and went from side to side and then back and forth.  I thought that would be easy, but if it wasn't for the therapist, my behind would have been bouncing in all directions! tongue   We worked almost nonstop for a little over an hour.  I spent the afternoon sleeping from fatigue, but I feel it is so worth it.  I feel that I've taken steps forward for the first time in over a year!  I have a home program, but she told me only to do this on days we didn't have P.T.  As soon as I have my neuropsych test, we are going to start on mind exercises (doing some now, but will become more intense).  Is the cooler weather helping anyone else?  I feel like a new person, far less "mind melts" than in summer.  Take care and thanks again for input! yeah
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