wow what a change

I really can't believe what I put myself through the past two years. I suppose the love I have had from my wife carried me most of the journey, and my passion carried me the rest of the way.

The passion I speak of is for helping people feel better. I was laid off from a $50,000 a year job or career some may call it. I decided to find a business I could never be laid off from, a business I could be comfortable with. Something that would help those I came in contact with.

I chose massage. My wife has become secondary progressive and the muscle cramps that go along with that diagnosis needed to be kneaded. I have done it so much, I can go right to a particular spot.

More later.

It is happening too fast.

I apologize for letting my blog fall by the wayside. It has been such an uphill battle in spots and sometimes I lack the stamina to deal with it. My wife was labeled secondary progressive a few months ago and the prognosis at that time was basically we will have to wait and see. Our doctor told her there were a couple of studies going on and she might be a candidate for one.

We were scheduled for an interview. The nurse practitioner explained what the trial was all about and that the drug showed a lot of promise. We were very optimistic.

So much for optimism... One of the requirements for the test group was an MRI to set a base. My wife had an implant put in her hip to help with bladder control. It is much like a pacemaker. The wiring in it and the wire to the stimulation area could be severely over heated by an MRI and there is nothing in the universe that will shield from magnetic fields.

No baseline MRI, no study. I was depressed for months. She should have been but one of her meds for migraines is a mood elevator as well.

More later.

Running Away Can Sometimes Help

You are right, it isn't fair at all to your loved one that you can sometimes run away, and they are stuck with the results of their illness constantly 24/7. I believe though, that a caregiver must carry a double load. Just because someone you deeply love has been stricken with this cruel disease, or whatever disease that causes loss or impairment of function, doesn't mean our responsibility to ourselves ends. If we cease to function properly, or become exhausted to the point of giving up, or worse yet, going off the deep end, then we are truly worthless to our loved one. The human condition demands we take care of us first. Survival is a very powerful instinct.

What does running away mean exactly? For me it means going someplace to be around friends who have no demands on me other than my love and friendship. It means spending time alone with the person who understands me the most, my inner self. It means clearing my head of the cobwebs that sometimes form on my identity. It means forgetting as much as possible what I must return to. I don't try to forget the love I am returning to, just the illness and the tasks associated. How can I forget those things when concern for her wellbeing while I am away must weigh on my mind? Very good friends who watch over her.

To the nurturers of the world, I guess it sounds a bit cold to say I try to forget, but keeping my sanity demands that I take away the negative feelings that build up. If I didn't do that, I could easily start to resent the very person I love enough to want to take care of. Loneliness is often part of those negative feelings.

How could I say I am lonely if I spend most of my off work time with her? Wow, what a great question. I wish I had a good answer for that. Not being a psychologist, I can only guess that it has to do with feeling alone in my efforts. The thing to understand is the patient is going through much the same emotions from a different perspective. They are very much, and want very much to be, sharing the entire experience with us. It is often difficult to connect the two perspectives and to open up to each other.

The very love that is shared can get in the way of sharing the emotions and feelings that each is experiencing. It is about loving the other person so much and wanting to protect them from the negative feeling emotions that do occur no matter how great the love is. I had to learn that through counseling. I knew I needed it because I was starting to dislike coming home. I was chastised for keeping those feelings from her. I have fought long and hard to learn to share some of those feelings with my wife so I don't have to carry the burden alone.

I highly recommend seeing a professional counselor. No matter how much we believe we have all the answers, it is so worthwhile to get a second opinion. We may miss something obvious we are overlooking, much like looking for one's glasses when they are on top of our head.

IF ANY OF YOU HAVE ANY METHODS FOR ESCAPING OR RESTING FROM THE EMOTIONAL PART OF BEING A CAREGIVER, PLEASE, PLEASE SHARE THEM HERE.

Where was the mercy?

You know, it is amazing to me that there are so many emotions inside us. Some should never be seen and others could be seen a whole lot more.

At the time we started dealing with the fact that my incredible wife had MS, there were other interesting things going on. My daughter was just hitting puberty. I am convinced that fathers who have daughters are totally devastated by puberty twice...once when they go through it and then again when their daughters go through it. Wow!!! She became incredibly sensitive and would cry at the drop of a hat. My wife on the other hand started menopause and the combination and resulting turmoil between her and my daughter was powerful enough to almost fuel the power plants in San Antonio. I was very much considering an exorcist. Everything kept piling up.

My wife started having short term memory problems very often at this time and when she would ask my daughter the same questions over and over 3 and 4 times in a very short time, my daughter's lack of patience caused some big battles. I spent a lot of time intervening. It was very taxing on my nerves as well. I knew something had to give before I went screaming into the night.

We heard about a lady counselor who specialized in newly diagnosed MS patients and I signed up my wife for patient counseling. It did help some, but there were things she didn't mention in the sessions that needed to come out, sooooooo I suggested couples counseling so I could rat on her and get it resolved. I am referring to her trying to do too much and getting herself in trouble physically, and not asking for help, and driving me nutso.

The counseling was wonderful and I learned a lot about feelings, but it was still not getting better. My wife was still trying to over compensate for her perceived lack of ability and my daughter was not being at all cooperative in doing what she was told...imagine a young teen not doing what they are told. My boiling point was quickly building and I knew I had to do something to make them realize what they were doing. Finally, just as my safety valve was about to burst open, my brain lit up with an idea I thought was nothing short of genious. Well, at least I thought it was good. On the way to our counseling session, I told my wife to remind me about dominoes when we got home. She chuckled a little and said she would, if she remembered.

The session was good and when we got home I told my daughter to bring her dominoes downstairs. I sat my girls at the dinner table and split up the dominoes. I told them everytime I put a domino on the table, I wanted my daughter to put one on top of the stack and my wife to put two. Everyone was giggling and going along with my game. Of course the inevitable happened and the stack got high and collapsed. I told them that now they can see what is going on at our house. I told my wife I was trying to take some of the load off her and she was putting twice as much back on by not letting me help her. I told my daughter she was adding to the stack by not doing what she was told. At this point I had started crying and told them that I could not continue to do this by myself. I suppose that was a bit of a selfish statement, but that is the way I felt.

While my graphic illustration got the point across, it still didn't ease my frustration and anger and questions such as why couldn't it be me instead of her...ok, another selfish statement....but I wanted to know.

I finally had to get away from the whole situation and run away from home for a few days. I drove to visit my family and support group in Tulsa. On the way my emotions went rampant. I said some really bad things to whatever air happened to be listening. I sobbed almost uncontrollably. I screamed at the top of my lungs so many times on the way I was hoarse. By the time I arrived in Tulsa, I was drained of all emotion and relieved that I was away from the picture and actually dreaded going back, but I knew I couldn't run out.

This Is The Way Ours Started, How About You?

Wow! It seems like a century ago, instead of only ten years, that we were informed by her doctor the tests were positive. She did have MS!

A couple of years before that proclamation, we had started walking around the block with the next door neighbors. Now and then, her left foot would catch on the asphalt as we walked. We didn't suspect any ailments at the time. Her doctor's words shed light on not only that, but other things in her past. With many MS patients, and many neurological disorders, the doctors run an object under the foot and watch for the toes to curl under. With my wife, as far back as our early years of marriage, I could tickle her feet and get no response at all. Funny what sticks in your mind.

How did we know to have her tested? We didn't. She had just started a new job and within a week was in a team builder class. The first day of class, she had noticed her face had been tingly, and when it came time for lunch, she tried to reach for her purse with her left arm. It wouldn't do what she wanted it to.

Tell me now, if your left arm wouldn't operate all of a sudden, and the left side of your face was tingly, what would you think?... Had it been me, my first thought would have been perhaps heart attack, stroke and who knows what else. I would have been in total panic and running for an emergency room. My overly dedicated wife faked it and finished the rest of the day.

I opened the door for her when she came home and there were tears streaming down her face. This was very unlike her. I asked what was wrong, and after she explained the events of the day, I told her she might as well not sit down, she was headed for the hospital. Fortunately I didn't have to fight her too much about it.

It is way amazing how quickly you can jump ahead of other people waiting in the ER when you mention tingling on the left side and inability to move your left arm. I was very impressed at their speed. She was hooked up to EKG's, EEG's, had a cat scan, blood tests, and various doctors and nurses fussing over her. Finally our family doctor's office called in a Neurologist and he did some other tests. He noted in particular that her reflexes were very pronounced..something to the effect that when he tapped below her knee, she took out two walls in the ER with the resulting kick..well maybe that is exaggeration, but it was pretty intense. He could also pull up hard on the bottom of her foot and it would bounce pretty good.

This is when I sort of got in trouble. They called me back to be with her and explained a little of what was happening. She was to be scheduled for an MRI. She was adamant about not wanting to stay at the hospital. I told her they would most likely run the test and send her home. It took quite awhile before she let me live down that I had lied to her. Sure enough, right after I told her she would go home, they admitted her.

After I got her settled in her room for the night, I called our dear friends next door and told them what was going on. Does anyone here know the feeling of being in total control of your emotions and then someone who cares about you asks that one little question that brings the whole thing crashing down? That one question is of course "Are you alright?" I can really appreciate the caring and love that brings that question out of their mouth, but the power it has for breaking down the dam of emotion is phenomenal. You know, ten years later, I have had that dam built back up almost to completion and something will happen to tear it down again.

Why am I doing this blog???

My wife was diagnosed with MS 10 years ago. We had been married 25 years by then and she still asked me after the doctor walked out, "Are you going to leave me?". That question ripped my heart out of my chest. I wasn't upset because she asked it, but because she was so scared of what the disease might do that she was unsure of my ability to handle it with her. Well, along the road I have had those same doubts many times, and have had to experience counseling and even anti-depressants. I have run the gamut of negative feelings. I have prayed for cures. I have even wanted this life to be over. I have wanted to run away from home more times than I can count. I don't believe that anyone out there can come up with a feeling I have not had to deal with. Ok, maybe I haven't had them all, but in ten years there is a strong possibility I can identify with most. If someone tells me about one I haven't dealt with, I will be glad to feature it here. In my blog, I plan to tell you any information I have seen over the years. I will share with you what we have tried and what has done good for both of us. Please, Please, Please..newly diagnosed MS patients and their caregivers, you must find some good counseling and make use of the opportunity to express your thoughts and feelings!!! The MS Society can be a great source to help you find support in your local area.