Dealing with frustration

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.   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!

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.

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".  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!   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.   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!

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. Take care!

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!   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!   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!