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.
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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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Live in the Moment

One of the greatest challenges of living with MS is how unpredictable each moment of your life becomes.  I’ve shared that frustration before but I keep coming back to it because it’s such a constant struggle.  Adapting to it not only means being prepared for the unexpected and being flexible but also being prepared to accept disappointments and to let go of planning and any sense of control.
This week has been that way.  We found out early in the week that Lynn was a finalist in the National Indie Excellence Book Award contest for his book, Rising Tide.  This contest accepts thousands of entries throughout the year and he submitted Rising Tide in five categories.  He was a finalist in the category for adventure. Though his book is usually found in the “fantasy” section , his stories are primarily an adventure. This recognition was particularly gratifying because writing has become his “career,” his daily work, since his MS has progressed to the stage that he can no longer do anything physical.  He has a friend who comes in weekly to type for him and during the week he uses his slow, hunt and peck typing style to market his book to book clubs.  So the first part of the week was “up.”
…but that was Monday, the rest day before his Rebif shot.  The rest of the week he has felt tired and generally bad from the Rebif. Each morning he has the hope that today will be a good day but after exercising, eating breakfast, and his morning hygiene routine, he is wiped out for the day and his strength, stamina, and outlook steadily go downhill. 
Knowing that is how the week had gone, he optimistically made arrangements for a friend to come by this morning at 10 to repair the hole in the wall his wheelchair handles has made when he turns from the hallway into the bedroom (another challenge of being disabled, repairs that come due to equipment not suited to the size of the house or vise versa).  We got up at 7 (we have to have three hours at least to prepare for the day) so he would be ready by 10.  By 9 he had to call and cancel.  For the third Saturday in a room, he just didn’t have the energy to supervise a construction project. 
From Lynn’s perspective, he’s getting sick and tired of being sick and tired.  It’s very discouraging to think that it might take another three months before he adjusts to the Rebif enough that he does not feel lousy all the time…and then there’s the possibility he won’t adjust and it will always make him feel this way.  From my perspective, I know that my ability to plan for work, for vacation, for trips to the doctor, store, library, wherever… is always hampered by how he feels at any given moment.  For example, I just came back from the library where I picked up several books on tape (that’s how I read now since I no longer have time to sit down and actually ready anything).  In order to go to the library and back–a fifteen minute round trip at most–I had to make sure his bladder was empty, he had his liquids beside him, he was comfortable in his wheelchair, he was connected to his peddler, and his TV channel was set to where he wanted it to be; all before I could consider getting myself ready to walk out the door.  Walking back into the house, I yell, “I’m back,” and of course, I hear, “come here when you can.”  He needed another catheterization, his tea was not hot enough, and he was congested and needed nose spray. It’s always something… 
Lynn noticed a commercial this morning where a caregiver for a patient with prostate cancer was talking about her role as a caregiver.  He looked at me and said, “why does she call herself a caregiver?  She doesn’t do half of what you do everyday for me.”  I explained that each disease has its own unique caregiver needs and often the emotional support and managing the home and appointments for someone can also be very demanding even if you don’t have to physically lift, move, feed, bath, clothe, entertain, etc. 
I understand where he was coming from; however.  There are certainly degrees of caregiving just like degrees of being sick. I subscribe to a caregiver online magazine. I briefly look at articles to see what might be helpful.  I know each person’s situation is very challenging and it’s very difficult to be a long distance caregiver to manager situations for a parent or relative in another city or to live with someone who physically is functional but mentally is dysfunctional.   But caring for an MS patient is uniquely challenging, I think.  For most other conditions, you can get into a routine, know from day-to-day what needs to be done, and plan ahead.  For MS, that’s not true.  MS affects so many systems of the body and can be influenced by the weather, an illness, seasonal changes, the time of day, rest, diet, almost anything and whatever that effect may be will impact their bodies either in how they feel or how they function.  Therefore, as the caregiver/business manager/entertainment arranger/homemaker/etc,  you can’t effectively plan hour to hour sometimes much less day-to-day.  For me,that is perhaps the most challenging.
Next week will be our first virtual support group conference call.  If you, too, have similar challenges and would like a place to air your concerns, frustrations, triumphs, and hopes, please join us.  Contact me through Skype.  My ID is MScaregiverdonna.  Send me your contact information and I’ll add you to the conference call group.  I’ll give participants a call around 2 pm EST (give or take a few minutes in case I’m in the middle of a catheterization or something) on Saturday, June 16. I look forward to getting to know those of you who might want to participate.
Till next week….

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Free to a Good Home…with patience

Lynn has started a new MS medication–at least new for him.  It’s Rebif, an interferon beta-1a therapy that is supposed to slow disease progression, reduce the development of lesions, and reduce exacerbation occurrences.  Sounds like a good drug but it’s also used primarily for relapsing-remitting forms of MS and Lynn maybe into secondary progression now, so we’ll see… What I do like about it is that he only gets it three times a week instead of every day.  That’s a nice difference from Copaxone.
Now, for the other side of the coin and why I want to give HIM away to a good home! Due to the side-effects of the medication, the dosage is titrated upward (i.e., gradually increased over time so that the body has time to adjust to it before increasing the dosage). He just finished the 8.8 mcg dose and will begin the 22 mcg dose tonight. So far side-effects for the flu-like symptoms have been minimal.  However, Lynn is VERY sensitive to any change in medication routine and he’s been feeling miserable all week.
Primarily he has been feeling tired and irritable…nothing seems to make him comfortable.  He has a brief period when he first wakes up in the morning when he feels half-human but by the time he takes his morning medications, completes his morning bathroom routine, and does a few exercises, he’s “done in.” He then has nothing left for the day.  I put him on his peddler and start the process of my dual life.  I work maybe 15 minutes, then, “Hey, sweetie,” is heard from down the hall, and I go (pick one or more: give him nose spray, get him cold water or hot tea, adjust his clothing, fix the peddler, scratch an itch, change the TV channel, help him with the computer, …).  He just can’t get comfortable.
Then there’s the irritability…  I have a baby monitor that sits beside my work computer so I can hear what he needs.  His “comments” generally indicate a great deal of frustration.  I know he has absolutely no patience right now and I usually get a string of commands/requests rather than one or two.  He apologizes all day because he hates to be this way but he’s so miserable he just can’t help it.
He has also gotten depressed.  That is one of the major side-effects of this drug.  In fact, it can lead to suicide.  He’s not there or even close but he was nearly in tears this afternoon talking about being afraid.  Whenever he starts feeling this bad, he becomes afraid that it won’t end…that life going forward will always be this way.  That’s pretty common for anyone who feels bad but I especially think it’s difficult for those with a medical condition that often DOES get worse and stay bad.  He used to not share these concerns with me but he’s learned that if he does, I can usually help him see that there is a temporary reason for why he feels so lousy.  I expect though that he may need a lot more support while on this medication and maybe even an increase in the anti-depressant he’s on.  I’ll keep a close watch out for how he is doing for sure.
The hard part for me now is that I’m so conflicted.  My job needs my attention more these days.  My daughter’s baby is due June 3 and I’m planning a baby shower for her on April 28…that’s fun but it also takes time and a lot of work to put it together.  (it’s not so much work if you don’t already have too much to do but in my small world right now, ANYTHING extra, good or bad, is a lot of work!) I want to be there for him but he’s wearing me out.  Last night I had to get up to either cath him or help him get comfortable literally every hour and a half.   I’ve been miserable myself all day (I did take a nap for an hour this afternoon so that helped a great deal).
He’s napping right now so that’s why I have time to write this.  I dread the next two months as his medication titrates upward and he will most likely get more side-effects. I really pray (literally) that the medication will help him and that his system will adapt soon.
If any of you use or have a family member who uses Rebif, can you let me know how long it takes for the side-effects to settle and become manageable?  Thanks

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Going to the Movies

I have always enjoyed a good movie. It’s one of the things I miss about not being able to get out and go places now.  However, you don’t have to go out to see a movie any more; you can now do it in the comfort on your own home and with the benefit of a “pause” button. 
What would we do without “pause”?  We rented from “the big red box” a movie called, “We Bought a Zoo.”  Fantastic movie!  I highly recommend it.  So after I gave Lynn his shower, got him dressed, took my own shower (which I find necessary every time I give him one), got him settled with his peddler, and gave him his afternoon meds, I put the DVD in to watch. 
About 10 minutes into the movie, I paused to cath him and fix him some tea.  About 20 minutes later, his foot was hitting his wheelchair so I had to fix that (didn’t pause that time), ten minutes after that, he needed nose spray.  I settled back on the bed for about thirty minutes and it’s “pause time” again for another cath.  Clean everything up and back to the movie.  A few minutes later, he needs his arm scratched.  Ten-fifteen minutes later, his foot hurts and his socks need to be pulled up.  (This one takes a pause.)  Got him settled, restarted the movie, and he needed nose spray again (he has chronic sinusitis).  Then another cath (yes that’s three in the space of what should have been a two-hour or so movie.  Ah, yes more tea is needed too. 
I lost count of how many times I was interrupted during the movie.  Seems like at least every 10-15 minutes.  I used to think the kids were tough to watch a movie with.  I think Lynn wins the contest as to who needs more attention.  It’s not always like this but it often is at night.  Late evenings are always bad and this past week has been significantly so.  He just started Rebif so he’s having to get used to that.  His dietician started him on some new supplements that help with removing bad stuff and rebuilding good stuff.  The pollen is heavy which always takes a major toll on his energy level.  So it’s been a hard week for him and it doesn’t seem to be getting any better.
But with all the pauses and the interruptions, we managed to go to the movies and we both really enjoyed it.  Certainly isn’t something we could do at a theater (can you image how irritated our “seat mates” would have been if I had gotten up to help comfort Lynn that often?)  But we adapt to our limitations and we find ways to have fun and get entertained.  Our Friday night date was different but enjoyable for us both.  Hey, and if you haven’t seen that movie yet, it’s a really good “feel good” movie.  I recommend it!

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