Virtual Support Group

Reaching my Saturation Point – at least today

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I guess I think that I can do whatever I sit my mind to and that my body and abilities will fall in line to make sure it happens.  So I strive to be the best manager, employee, mother, wife, caregiver, and friend, I can be. I want to take care of everyone’s needs and solve all their problems and still have energy afterwards to take care of our home and personal affairs.  Well, today I reached my saturation point and had a melt down…and so did Lynn….
If you follow my blog, you know that I offered to start an online “virtual” support group.  The plan was for those who were interested to call-in and we would have a conference call support group. I announced that if there was any interest, I would get it started.  I had a few interested responses so I created a Skype account and ordered a webcam.  The only problem is, I didn’t have time to learn how to use them properly.  I got everything loaded in advance but hadn’t had time to do a test drive, so, I was a little nervous about having the conference call today. 
What also didn’t help was that I was up till 2 a.m. after working till midnight on some reports for work and then getting Lynn and I ready for bed. I slept-in till 10 a.m., but I still should have had time plenty of time to see to the test before 2 p.m. when the call was scheduled.
Only it didn’t work out that way.
Each time I would sit down to pull up the program, Lynn would need something.  Then just as I was going to lay him down for  a nap, my son and his girlfriend came over to see him for father’s day. I haven’t seen either of them in a while and my son had been out of work for a week due to eye problems so I wanted to spend time with them.  While they were here, I put Lynn to bed for a short rest.  Suddenly I realized it was getting close to conference call time.  I put my conversation on hold with my son and went to get Lynn up.  Realizing I was most likely going to be late for the call, I sent an email to the other participant (I ended up with only one person interested in attending the conference call) to say I might be running late before going to get him up.  Sure enough, I was about 15 minutes late getting back to my computer after he finished with all his requests. By that point, the other party was not answering the call (I’m sure she had given up by then and if she’s reading this, I apologize for being so late!)
Since I could not get though on the call, I decided to test the connection and see how well the webcam worked.  I called to the computer in the back room where Lynn was and tried to talk to him.  The audio didn’t work well at all and he could not see the video.  So I tried to figure out how to make the equipment work properly for about thirty minutes, getting more and more frustrated as I did because the instruction book was so difficult to figure out.  Before long, I was ready to through the little camera away. 
Then Lynn needed me to turn off his camera because when he closed down Skype, the camera stayed on.  Well, it didn’t have an off button and I couldn’t find an exit menu for his software.  After spending ten minutes pushing more button, I finally decided to just unplug it.
By that point, I was in tears.
When I get upset, Lynn gets upset because he knows I’m so overwhelmed with all I have to do.  He tries to encourage me but all I want to do is cry.  So, I do, and I feel better, but that’s hard for him to understand. 
Then it’s Lynn’s turn to have a melt down…
Afterwards, I get him settled in his peddler, go fix some lunch, and go dig up some tomato plants that grow naturally near our house and transplant them into a pot on the deck.   I come inside and start to cook Lynn’s dinner when I hear something hit the floor hard in the bedroom.  Doesn’t sound big enough to be him but something obviously hit the floor.  I take off for his room and he’s heading my way in an obvious “mood.”  He looks like a thunder-cloud rolling in from the west. (Remember, I left him attached to his peddler which is obviously not attached now.) 
“What’s wrong?” I say.  He bellows back, “This !%##$%$% seat cushion is tearing up my @### and I have to get off it.”  Then he adds, as he rolls over some of the things he has knocked onto the floor, “I’m so #$%^ tired of being sick and feeling like %^&*(!” Then as he pushes his way to the bed so I can take him off the chair, he runs into the bed, knocks it off the blocks it sits on, and out rolls the knob to this wheelchair I knocked off earlier in the week and couldn’t find after searching for an hour! I yell at him, he growls, …. and then we fix the disrupted room …and our tension deflates.
It was bound to happen.  Being sick for long periods and being confined to being with someone who is sick for long periods takes a serious toll on one’s emotional stability.  Our relationship is like a see-saw.  If one is down and the other is up, we keep moving forward and it works. But when both of us are down, we’re not at a standstill, we’re broken.  Something has to give to take away some of the pressure pushing us down.  For me it was tears and for him it was banging into things and cussing. He needs a punching bag but he can’t punch so his chair and his mouth are his only outlets.  All that pent-up energy has to go somewhere!
So right now we both feel better.  We both “blew” in our own way  or got  our pent-up emotions “wrung out” of us by situations so we’re stable again….and everything’s good.
P.S.
Back to the conference call.  I’ll try it again on July 14 at 2 p.m. eastern standard time.  Send me your Skype contact information in advance if you want to be on the call.  I have some concerns about whether this is actually going to work or not.  I realized today that Lynn’s needs can’t be put on hold while I talk on the computer so being able to set aside a particular time might be a challenge.  Plus I’m a little concerned he might over hear my comments and I don’t want him to do that….Just some nagging concerns I’ve been having.  Let me know what you think, too, about it–honestly.
Till next week,
Donna

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Live in the Moment

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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….
Donna

Live in the Moment Read More »

Group Conference Call

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Reminder:  If you want to participate in the virtual support group conference call next week (June 16 2 pm EST) you need to send me your SKYPE information prior to the call so I can include you in the group call. My SKYPE ID is MScaregiverdonna.  Send me an invitation to become your contact and then I’ll add you to our group.  Looking forward to connecting with you next week for our first Virtual Support Group.

Group Conference Call Read More »