My Story-Part 4-What I've Learned

It's now been almost 18 years, and after talking over with family and doctors, I am pretty sure I've had it since high school.  It hasn't been an easy road, many hills to climb, many lessons to learn.  I'm thankful for Rick and my children, Jessica and Taylor, who've had to learn with me.  They didn't give up on me, when they could have. I love you and thank you.

After I left Dr. Amp, I asked around for a good neurologist.  I was tired of the run around and not getting the full picture. I was introduced to Dr. Blade. From the first visit, he answered all my questions.  He has been my doctor since January 1999 and is always there at a moments notice.  His office gets me in within a day or two. He's up on the latest news for MS and what would be best for me.  He tells me to do things that help make me feel good-do it (within reason), i.e. yoga, essential oils, alternative medicines, chiropractic care, acupuncture.

He hasn't been the only good doctor.  And that's the first thing I'm adding to my list of what I've learned.

1:  Find doctors you can trust!!  Do not be afraid to change your doctor.

This goes for anyone who needs care.  If you can't talk to your doctors about what's wrong with you, who can you talk too?  I joke with mine; I know about their families and they know about mine.  Now, I don't waste their time, but I do feel comfortable with the care they give and I trust their opinion. AND if I feel anyone if using me as a Guinea Pig, I'm out of there!

2:  Be empathetic. It's showing insight to what others feel or are suffering themselves. 

I've mentioned in past postings how I used to be always on the go and rushing from Point A to Point B, mowing down anyone in my way.  Now, I am one of those people who are often mowed down by other thoughtless people who are in too much of a hurry to do their thing.  

3:  Learn to say NO!  You only have so much energy and so much time.  Don't feel guilty.  Be honest with yourself and with others.   

I noticed when I first started doing this, I felt really bad.  I was one anyone could count on to call on.  I wanted to be the one reliable person.  But I just couldn't do it.  I found it was easier to say no and not stress out myself or my family trying to complete the impossible, than to fail and have to apologize and disappoint someone.  

4:  Everything takes longer.      

I started noticing this years ago with my long, thick hair.  Straightening it would take over an hour, and the curling iron often would be too heavy to lift.  A normal 45-minute morning routine (shower, shave, dress, blow-dry and straighten hair and slap make on) was now taking over twice as long. Even with skipping some of that.  I'd often get out of the shower, exhausted, and have to lie on the bed, resting for a half hour before I could even get dressed.  Not that Rick was complaining about that part-helpless, naked wife.   haha 

Changes had to be made-shorter hair; no more straightening and back to the natural curl and Medusa-look in the mornings; fewer showers during the week (did I really need one everyday?) and when I do take one, minimize actives for the day.   Keeping a calendar and making sure my activities were done in the mornings when I've energy was a great help. I no longer cram my days full. I can't multitask, and since it takes me two to three times longer to get everything done, I schedule for that.  My life is still full, but I try to make it pleasantly full, instead of exhaustively full. 

5:  Pain is a given.                                                                                                                                                             

There will be days with no pain, so be glad when they happen and rejoice.  Other than that, do best you can. Don't wallow in misery.  No one wants to see it or hear it.  I have learned that long ago.

My hands never recovered.  By the end of the day, they are tingling and burning something fierce.  Too much activity or the weather can affect the sensation.  My toes joined the parade about six years ago, although not as bad.  Sometimes it is a grand jolly affair.

6:  Loss comes.     

There are many things we've lost due to my MS.  My children had to grow up faster than most children have had to; my husband had to take on a roll of caregiver; for me, I feel I have robbed my family of everything I could have been to them.

Even after all these years, I still grieve.  Just this past Christmas season, I was hit out of the blue by the memory of one of my losses.  I couldn't make it through a church service without mourning bitterly.  But, the grief soon went away and was enjoying the Holiday Spirit again. The saddness happens like that-coming and going when it's least expected.

7:   New things gained.  Who would have thought I'd have gained anything because of a chronic illness.  Certainly not me.

My husband and I have grown closer together.  There are things we've had to share and endure not every couple gets to.  My children have learned marketable skills that have helped them in the job force.  Many teachers and employers have complimented them on their hard work skills and etiquette. I received new knowledge and education; made new friends; visited new horizons; and all because I have MS.  I'd have never done any of these if I hadn't been diagnosed with this incurable disease.

8:  People will judge.  We all do to an extent.  There's nothing we can do about it.  Just smile and know  they don't know you're situation and move on.

I used to try to hide my illness from people, but now I don't care.  They can say what they like and lump it-try to live in my shoes for a day or two and see how they like it.  When little kids see my disability, point, and ask questions, I don't shun them or try to ignore their embarrassed parents' desperate hushing efforts.  I turn to the child and explain what is wrong with me. I use humor, get the child laughing.  Most times the parent is grateful.  This dispels fear, aids awareness, and encourages conversation.  I've found this has helped everyone involved.

9:  Do what you can do.  When you can do no more, then stop.                                                                                                                                                       

I have a great saying I TRY to follow from my favorite cleaning website, Flylady:  You can do anything in 15 minutes. I TRY to stick to (not that I always do it) this motto.  I am getting much better at it, but I must say, I've learned this lesson the hard way. 

There are many more things I could add to this list, but I chose the most important.  I can't say I do all of them 100% all of the time.  That would mean I've learned PERFECTION and PATIENCE during these eighteen years.  And Rick would tell you I was lying.  But then, all of us slip now and then.  It's what gives us room to grow and make improvement.

                    ***Names have been change to protect the innocent and not-so-innocent.***