I've Felt Worse

One of Lynn’s regular responses when someone asks how he is doing is, “I’ve been worse.”  It conveys to the person asking that he’s not feeling great but that he’s grateful he’s not feeling worse.  It also allows him to avoid discussing how he really is and it shows a positive attitude, which is something that he tries to always maintain.  However, it also denies the fact that he actually doesn’t feel well at all.
Several months back I challenged him on that statement. “So, if you have felt worse, does that mean you feel good now? Are you not allowed to admit that you feel horrible because you have made such progress toward feeling better?” He thought about it for a minute and admitted that he just didn’t want to confess the he didn’t feel good yet.  He felt that he had been feeling bad for sooooo long that no one would want to hear that he felt bad and yes, he felt much better than he used to, so shouldn’t he feel grateful rather than complain?
I think his attitude is pretty common for those who have chronic health conditions. They get so tired of feeling lousy that they hope by ignoring how they feel; it will not be so bad–sort of like that saying, “fake it till you make it.” But does it really work to fake that you feel good when you feel like taking your next breath is too much work or if you had the choice to have your leg amputated versus dealing with the spasticity and muscle spasms every day, you would choose amputation if they could guarantee you wouldn’t have phantom pain?  I don’t think you can ignore the fact that you feel that bad.  You might keep it from others but you can’t keep it from yourself.  If you do, then you may stop trying to get better and just give up, seeping lower and lower into depression.
Lynn and I tend to try to identity a reason for why he feels bad each time that he does… “Must be a low pressure front coming it,” “It’s the Rebif,” or “It’s pollen.”  We both know that “it’s the MS” or the “hypothyroidism” or the “heavy metal detox,” but if we can attribute it to something more transient, then it might go away sooner and that’s comforting. Like everyone else, we try to fake ourselves out into believing this is not permanent.
continue reading this post at: http://multiplesclerosis.net/living-with-ms/ive-felt-worse/

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When Is This Going to go Away?

I realized something this week. Somewhere in my subconscious, I seem to be waiting for all “this” to go away…to wake up one day and “everything” be back to normal.  How odd is that?
Lynn was diagnosed with MS in 2006.  We were married in 1997.  I knew well before his diagnosis that he had MS even though he was repeatedly told he didn’t; that his symptoms were something else.  Lynn didn’t want to have MS so he accepted that explanation; however, I’m a realist, and in my heart, I knew.
When the official call came and one of his worst fears was realized, I just received confirmation of what I “knew.”  I immediately started researching what I needed to know so I could manage his care. Initially, he was more involved in putting up roadblocks to learning about his condition than in really being involved.  I, however, have always faced my challenges through trying to learn more.  I look to find answers in the wisdom or knowledge of others through books, articles, webinars, etc.  I try to absorb all I can with the hope that the more I know, the easier it will be to cope.  In many ways that works for me because as the challenges occur, I at least have a starting point on how to approach it.
That being the case, then why am I waiting for all this to go away? I realized that I keep clinging to the hope that one day a miracle will happen and he will no longer feel so tired or so incredibly bad all the time. I read about other people with MS and they go out, have fun, work, participate in family events, do advocacy work, participate in bike rides and walk-a-thons, so on and so forth.  They seem to feel well and have energy though they get around using a wheelchair, cane, or walker.  They say they have bad days but overall they seem to feel pretty good.
Not Lynn.  He has maybe one day a week he feels pretty good. He’s pretty good on Monday, not too bad on Tuesdays usually. By Wednesday the first half of the day is okay but by afternoon he’s heading downhill.  Thursday is worse, Friday is pretty bad, Saturday and Sunday just “suck.” He feels so bad today, I’m surprised he can even function.
Why does he feel so bad?  We have lots of excuses.  His thyroid hormones are way off.  He’s slightly anemic.  His Rebif shots seem to accumulate in acting as a toxin to his system as the week goes by. The combination seems to make his quality of life pretty low most of the time.  It’s hard to watch him be miserable day after day after day; to watch him hope for a good day and need to accept that it’s not going to be one…again.
For me personally; if he’s having a bad day, he needs more attention.  He becomes impatient; then I get annoyed and then feel guilty for being annoyed but still get that way anyway. He can’t help with any movements so I have more muscle fatigue and spasms.  He needs to drink more fluid to flush out his system which means I have to cath him more (I cathed him 21 times yesterday in that 24-hour period. Needless to say, I was interrupted in whatever I was doing about every 30-45 minutes all day long).  So even though he’s the one who feels bad, we are both significantly affected.
He tries not to burden me with how he feels.  He tries not to ask me to do too much but when he’s like this, he really cannot even find the strength to lift his good hand to flip a switch on his peddler to turn it on; to scratch an itch behind his ear because he can’t lift his arm that high; to change the TV channel on the remote because he doesn’t have the strength to push the button, etc.  If he can’t do these small things, forget feeding himself, getting dressed, shifting positions in his seat or in the bed…
When he started Rebif, he was told it should take about six months to adjust to it.  He started it in April 2012.  We’re still waiting on the adjustment.  While he’s better than he was initially, this drug really kicks his butt.  Even as bad as he feels though, he’s afraid to stop it.  He has not had an exacerbation since 2010.  Is that the medication?  If so was Copaxone doing just as good as Rebif?  That didn’t seem to be the case because he progressively got a lot worse while just taking Copaxone.  If Rebif has been helping him to not lose further function is it worth feeling awful most of the time to keep it going?  Maybe so if an exacerbation might take away his ability to breath on his own, or be able to see, or remember, or speak.  There are a lot of really bad “loses” that can happen with MS so maybe putting up with extreme fatigue and weakness is not such a bad thing.
But I keep hoping that each day will be the day he suddenly adjusts to the medication, either the medicine for his thyroid or his anemia, or the Rebif suddenly works and he no longer feels absolutely awful.  I keep waiting for that day; expecting our lives to no longer be held up by how he feels and that we can again go back out into the world and be part of it.  Is it possible that could happen or is it just wishful thinking?

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Warning! I have a Cold!

Yesterday we celebrated Christmas with my side of the family.  Several traveled about five hours so that we could be together. We had a wonderful time but it almost didn’t happen.
Earlier in the month I posted a blog about how difficult it was to choose between caring for Lynn and helping out my daughter who was sick and whose baby was very sick. After reading that post, my loving, self-sacrificing, 80-year-old parents jumped in their car and drove five hours to come help her out so I would stop worrying about her.  (See where I get my caregiving tendencies?)  It was such a relief to have them here so I knew Sarah could get some much-needed rest.  They kept the baby at my house, and I could help from across the room or up close if I was careful to stay away from his little contagious face.
My parents needed to get home for some things previously planned so they left early Friday morning of that week (two Friday’s ago).  A few hours after they left, my daughter sent me a text, “do you have a spare stethoscope?  I think Eli is wheezing.”  Though I didn’t have a spare, I immediately took what I had and went over to check his breathing.  In doing so, I walked into virus city but I took the risk because I was worried about the baby.  I’m glad I did because he was certainly wheezing and, in fact, ended up in the emergency department a few hours later to get breathing treatments.  I stayed away from them after that but it was too, late–the alien invader cold virus breached my armour and attacked.  I now have a horrible cold and I’m miserable…and feeling guilty and worried.
Several other members of my family had also been sick last week with colds and one developed an intestinal illness which was a totally new bug to throw into the mix. We almost postponed the family get together; but by yesterday morning, most were feeling better so we decided to have a “no touch” celebration.  Honestly, I think I was the sickest one there so I hope no one gets sick from me!  We occasionally forgot and gave a hug but for the most part, we did not touch.  Since the baby had finally gotten better, the only ones who could touch him were his parents and me (other than my parents who had no symptoms of illness and had already been exposed to him) which was disappointing for the others.  I was ill but from the baby sharing his germs so he could not be re-infected from me.
As I sit here, now, sneezing almost continuously, my biggest fear, of course, is Lynn.  I can’t help but share these germs with him.  I’ve washed my hands till they are cracked from dryness.  I put a towel over my shoulder when I have to move him to keep his face away from my clothes. I turn away when I cough and sneeze but he’s living in my germs.  I give him Zicam around the clock. However, I fear it’s just a matter of time before he is sick, too.  In fact, he said his throat was a little sore this morning and his use of nose spray has started to increase.
Everyone hates to get a cold and hates the miserable symptoms that cause sore noses, difficultly sleeping and other unattractive and inconvenient maladies.  However, for a person with MS, it carries even greater concerns.  MS is considered to be an autoimmune disease because the immune system in an MS patient is “confused.”  Where in the lives of a person who does not have an autoimmune condition, T-cells and other infection fighting agents are good guys, in a person with MS, they are traitors.  Instead of helping the body, they attack it.  Think of it this way…
Two little countries are located side by side and they hate each other with a passion.  Both countries train their soldiers to attack and destroy any soldier from the opposing country on sight.  The two country’s inhabitants have unique skin colors.  Country-A inhabitants have yellow skin and Country-B have green.  Finances are an issue one year and Country-B is low on resources.  They came up the strategy to put a blueing ingredient in the water of Country-A.  The next morning when Country-A wakes up, everyone who has had water to drink during the night has turned green.  The rest of the “yellow” inhabitants think they have been invaded and began to attack and kill the “green” invaders.  Thus they destroy themselves and the Country-B gains control.
Something similar happens in MS.  The person’s immune system senses danger and attacks itself so when a new infection is introduced, more “defenders” are produced by the body and these new defenders not only attack the invaders but also the person’s own body.  That makes the individual susceptible to having an exacerbation and developing new MS problems. 
That happened to Lynn two years ago.  He got a bladder infection that was not treated correctly. He lost his desire to eat and his body’s inefficiency to fight the infection led to him being hospitalized.  Once he was hospitalized, he developed pneumonia due to an accidental aspiration from the feeding tube he had, and between the two infections (respiratory and urinary), his body engaged in WWIII tactics which nearly cost him his life.  He has just now gotten back almost to his pre-hospitalization level but still has a way to go even now.  Before hospitalization, he had better balance, could use both hands, and had voluntary control of urination. Now he has none or limited ability in these areas.
So, it is with great concern I wait to see if my cold leads to an illness in his body.  I’m also concerned because he currently has a stage III skin breakdown on his right buttock.  Therefore, his body is already under attack trying to repair the skin damage.  I fear that adding in the defense of a cold will be over whelming. 
I’ll just have to wait and see and ask for prayers of defense.  I know if he gets sick not only will he need prayer support but so will I.  (He becomes even more needy when he doesn’t feel well and I’m already on overload from that front as it is!)
On a more pleasant note, I look forward to two more family events this coming week and one next week for New Year’s Eve if he isn’t sick. 
In closing, I wish you and your family a very MERRY CHRISTMAS and God’s blessings on your new year!

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