MS Life

If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.

The night before I went into the hospital, I was feeling unwell. I went to bed as usual in my hospital bed which is in the same room with my husband. During the night, I endured a multitude of painful spasms in various parts of my anatomy that made me cry out. My husband later told me heard me cry out several times but apparently he went back to sleep. This, of course, left me with a huge question mark on my face, like the Scarlet letter, that I wore all morning. Why hadn’t he approached me to help me, I wondered? Why just turn over and go back to sleep?

Later on, when things calmed down, I finally fell into a restless sort of sleep. I did see the grey of dawn approaching and did my best to ignore it. I succeeded although that must have disappointed the dawn as I’m usually so happy to greet it.

When I finally woke up a couple of hours after falling asleep, I found my sheets saturated in my urine as was my nightgown. I began to weep, and quietly started disrobing my bed, as if it were a person standing before me anxiously waiting for my next move as I unclothed it. Instead, I was like an angry lover, tearing away at the bedclothes as though meaning to do harm to it instead of quietly and languorously crawling into it and covering myself with it till every nook and cranny of my body was covered by it.

After the sheets and bedcovers were strewn all over the floor, my husband poked his head in and asked if everything was okay. He could see that I was in tears and said, “what’s wrong?” I then told him that I had lost complete control of my bladder after spending the night in pain. His response was, “Well it’s a good thing you bought the bed sack to cover the mattress with.” Since I’ve had Multiple Sclerosis, I have had other incidents such as these, and since I recently bought this bed, I had just bought the cover for it that week.

I stood there a moment preparing to take my nightgown off next and found that I couldn’t do it right then and there. Instead I looked at him and burst into tears and told him to go away, that I had already taken care of things. I felt ashamed, ashamed for having done such a thing during the night (not my first time).

When I finally went down the stairs I asked him, “Is that all you could say? How could you not come and comfort me instead of talking about the bedcover?” He had no answer for me, but I could see that I had hit home. He then continued preparing to leave for work, and left.

After he was gone, I finally let go of all the tension I had been trying to hide. Yes, I know that I had cried a bit upstairs but when I came down I was cool and collected, cleaned up and prepared for my day. I sat at my desk, and started shaking, and then the myoclonic jerks began. I tried to get them to stop, but they wouldn’t. They would occasionally abate but then start up again.

The jerks continued and were incredibly painful and made my neck whip around. I was already suffering from headaches with a very tender neck, add to these the myoclonic jerks; I felt that I was coming undone.

I wear a lifeline. It’s a gadget that people wear around their necks in case of an emergency. It’s a good idea to have one if you live alone or spend a lot of time alone. Every month the lifeline reminds you to reset it. It usually happens after a call, where you will hear an automated voice says “It’s time to reset your lifeline. Please press the lifeline button.” It repeats the message every time the phone rings and you hang up. I had ignored it for several hours because I was in the middle of my work and didn’t want to stop, but after awhile, there was no work to be done. There was only squirming and jerking in my chair.

The longer I jerked, the more unwell I felt. I decided to cal my neurologist only to find out that he was out of the country. When I spoke to the nurse at the office, she could tell something was wrong. I was continuing to jerk during our conversation, and sometimes when they are particularly hard, all the air whooshes out of me and a sound comes out of me. She heard me and asked what was going on. I told her and asked to see my doctor and that’s when I was told he was out of the country. She offered to schedule and appointment with him a couple of weeks after he returned. I hung up.

The lifeline message came on the phone after I hung up and I knew if I didn’t reset it, it would go on for hours that day. I decided to reset the button and when I did, the operator could tell something was wrong. He asked me if I needed help, I said not necessarily and explained what was happening. He wanted to send an ambulance, and I asked him not to. He then offered to call my husband so that he could take me to the E.R. if that made me more comfortable. Meanwhile Lifeline would notify the hospital that I was on the way.

My husband arrived and we went to the E.R. They took some blood work and put me on Dilaudid I.V. It is supposedly six times stronger than morphine. I went into a relaxed fugue state while waiting for the results of the blood work.

Upon the return of the blood work, it was decided to admit me. My CPK-MB (Creatine Kinase-MB) was three times higher than it should be. Which was of great concern to my doctors. (a high total CK could indicate damage to either the heart or other muscles, CK–MB helps to distinguish between these two sources.) This information can be found at:

http://labtestsonline.org/understanding/analytes/ckmb/tab/test

There was evidently some damage done to my internal muscles which includes my heart. I was told that it was probably the intensity and the repetitiveness of the myoclonic jerks that caused these levels to rise, and once they got them under control that they would normalize again.

After four days in the hospital, these values had reduced to double rather than triple and it was determined that I could safely return home.

Various specialized Doctors have been in and out to visit with me. I repeated my story over and over again.

1. Months earlier headaches and neck pains.
2. Return of myoclonic jerks.
3. Cramps
4. Loss of bladder control.

Could any of these have been circumvented? No not with Multiple Sclerosis.

Meanwhile the Neurologist replacing my doctors noticed all the different medications I was on and asked specific questions about the names of the drugs, the dosage, and why I was placed on that medication for what symptom. I was completely flustered and embarrassed because I could not remember the names of the drugs and why they were given to me nor for what symptom.

It astounds me that even Neurologists don’t seem to comprehend the extensive loss of memory a person can have with M.S.

To make this long story shorter…..because I’m just tired of writing about it.

In summary: I’ve been ill. Wasn’t sure why but have been having problems with headaches and neck problems. Last week it all blew up and I had a bit of a meltdown that landed me in the hospital.

I am home now. None of my problems have been resolved. There is very little anyone can do at this stage of the game except to treat the symptoms, tweak medications etc…. I wasn’t even placed on steroids. Major concern for this hospitalization? Major organs shutting down or damaged.

So onward and upward we go don’t we? I’m home, I’m still feeling unwell but hoping things will get better eventually. Meanwhile life must go on.
What do I always say on here? All together now!!!!

What was that? I didn’t quite hear you?

That’s right! How do we turn all this around?

Well yes, life can be real shitty and I’ve been dragging my butt around all day long feeling depressed. I’m entitled just like the rest of you. BUT NOT FOR LONG!!!!

I cannot stand feeling this way. I’m not the sort of person who loves living in the dumps and who enjoys having pity parties and you know why? Because no one will come to them eventually. At first your good friends do, but after awhile it’s just same old stuff, and boring even to me. So why have them? It’s a personal thing now.

So, fight like hell to find something to distract yourself. For me, I called today to start a yoga class. Yep you heard me right!!! I have terrible ataxia, but by golly I’m gonna go do some yoga. Something outside of the box is what is needed when times get tough.

Fight like hell. Cry inside, cry outside, but always fight your way out of it and live. Not only that, show other people how to live in a topsy turvy world of M.S. You’d be surprised how many people notice it and learn from it. If nothing else. Be an example of how disabilities can actually turn into abilities to make changes in the world around you and for yourself.

Fight.

If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.

Well I’ve come full circle yet again this year because I am writing to you from my hospital room. I have been here three days going on 4 now and as usual, I am not a happy camper and everyone on this floor knows it.

We all know how difficult days are don’t we? How we have to struggle just making the smallest things work for us. The heavy duty thinking that has to go on before we are able to make the simplest of decisions. Sometimes those deicisons can become an impossibility so we lie to get out of making that decision and or we avioid discussing it right at that memoment.

I am having a difficult time writn I WILL WRITE BACK OTMORRWO.

Go into the SHOUT BOX and find me in there. If I’m not there find me on SKYPE under dididum2 and tell me to get my butt in there. I usually am working on a piece of music and forget about the time so that’s the fastest way to get ahold of me. I’m also on FB. I also have stickies everywhere so let’s hope I don’t forget.

Where did I leave off? Oh yes. I was struggling with the decision I had to make that I had kept to myself for three days. Here it is.

I was driving on my way to my Knitter’s group that I had formed ten year’s ago. I had stopped going recently for several months because I was having difficulty with a form of narcolepsy, where you suddenly and inexplicably fall asleep for a few seconds, minutes, or however long it takes. I was also begin to mistrust my visual acuity with seeing double, and with one eye behaving one way and the other eye looking in a different direction as confirmed my eye doctor who prescribed a prism for my glasses to help correct the muscles in that straying eye.

It was because of these problems, of vision, falling asleep, concerns over my reflexes and my slowly becoming aware that I was also misjudging distances between cars and the time it took to break between say a yellow light and a red light, that I imposed a no-drive-zone on myself. No one had to tell me to do this. I just did it. I simply told my husband that I didn’t trust myself driving too well and that I found myself straying now and then over the yellow line; therefore, I would give up my knitting classes as an obligatory commitment and would go now and then.

I didn’t go for several months and the group lost all its newcomers because apparently they missed me as their teacher. I do admit; I am a wonderful teacher because I love to teach.

Two weeks ago, although I had asked the girls to take down my sign from the coffeehouse window, a young lady called and was dying to learn how to crochet. She told me she taught middle school in a not so good neighborhood and wanted to teach them to crochet as an outlet as a means of managing anger. I told her that was a wonderful idea and told her how I taught at Riverside School for that same reason and the wonderful feedback I received from the parents. So I agreed to come in again for her.

My husband was not too happy about this. I told him I would be fine. I had recently drove into Princeton for a dental appointment and that went okay, so I had a bit of confidence back. I did not take any medications prior to going thinking that perhaps that was the culprit.

On the way there, I did fairly well. I did find myself drifting a bit to the left. I always drift to the left. I then concentrate on the right line, but then I over compensate and land up getting into trouble that way. But all in all it was good.

When I left the coffeehouse it was nearly 2:00 p.m., a bad time of day for me. That’s when everything begins to go downhill for me as far as energy etc…and after a day of teaching, well watch out! I was concerned about the drive home, so I stopped along the way at Target, then at Michael’s. What I didn’t realize was that I was just adding to my fatigue and I should have understood this. The last leg of the journey was all highway and about 15 minutes of it. So I got in and off I went.

I hear horns honking at me, looked up and realized that I had strayed into my left lane into oncoming traffic. I had fallen asleep. I corrected myself and made it the rest of the way home just fine. I rationalized it in my head and told myself it was a fluke and that I had accomplished a lot that day. I did mention it to my husband because I don’t keep things like that from him, but I made light of it. I made it sound like it was no big deal and to me, I had rationalized it so much in my head, that it was NO BIG DEAL.

You see, I had so enjoyed getting out and about again after several months of being locked up. I had real people to talk to and nonsensical chatter to listen to. I could say something and someone would answer me back. People looked at me and paid attention to what I said. I had a name, I had an expertise, I was “someone” outside my home. Inside my home I often felt like the plant that sits on the table top that waits for watering, although I get much more attention than that, so much more. What I’m talking about is the psychological aspect of how I feel. I feel like the plant.

That lady was so excited about the last and we made plans to meet this week just past again at the coffeehouse. I went through my books and found some crochet books to help her get going, I found a nice knitting bag for her and some extra accessories that I would give her to help her get started. Off I went.

I was in trouble almost from the get go, not so much from sleeping but from the ability to judge distance and speed. I was taking turns too fast and practically slamming on the brakes every time I had to stop. This was making me rather nervous. Everything had fallen off the seat next to me where all my knitting gear was and was strewn all over the car bottom. The strange thing about it is that I was visualizing myself in a nicer vehicle with deep concentration. Maybe that had something to do with? So I thought okay, enough visualization for me, stay in the here and now. Nevertheless, I continued to do my wheelies all the way there after getting lost several times. Now why in the world would I get lost going somewhere I had been to so many times before?

I was late, as usual. When I arrived there were two people in the group….TWO. Yes, I know, it’s summer; people have places to go families to be with and all that stuff I know nothing about (that’s a different book), but for crying out loud—my new student wasn’t there!!! She was the one I had gone to all this trouble for.

Here’s something I promised I would never do in here. Ready?

I am stomping my feet, pounding my fists on the desk and having a hissy fit and saying #$#$ %^%&&.

I feel much better. The reason I’m having a fit is that I’m finally getting to the reason why I had this dilemma in the first place and in my usual long-winded story-telling way, I’m getting to the point of the story. On the way home, I fell asleep but this time I had strayed to left two lanes over into oncoming traffic. This meant I must have slept longer. All sorts of cars were honking at me. When I tried to correct myself I jumped in front of a car and almost caused a major accident. I was in the far left lane and looked for a way to get off the highway with my heart hanging out of my mouth. There was no way to quickly do this, and while looking for a way out——I fell asleep.

Okay folks, now I’m crying. Again, the car horns were honking and again I was two lanes over, and yes again I had to get out of the way of oncoming traffic, and yes, I almost caused another major accident. This time not only was my heart in my lap now, but the tears were rolling down my face. I could see that a bunch of people were on their cell phones and I knew they were calling the police. I had to get off.

I found a way to get off and off I went. I found a nice quiet spot in a side road down some fields and sat there and coaxed my heart back into my chest and waited for the flood gates of my eyes to shut down.

I didn’t have far to go at this point to get home and I made it there in one piece. I’m ever so grateful that I did not hurt anyone.

WAKE UP EVERYONE. THIS IS MS. This is one way it can affect you. Many are afflicted physically and are intact mentally. Many are afflicted mentally and are intact physically. And joy for joy, there are people like me who are afflicted both mentally and physically.

I did not say anything to my husband about it because I knew that I would have to give him my keys when I told him. This would have to be a voluntary action on my part and I just couldn’t bring myself to do it quite then. I looked for advice from some friends, but none were available at the time. So I struggled with this.

Ultimately, after three days, it came to me that there was no decision to be made. Either I get in the car and kill myself taking some people with me, or I don’t. I took out my car keys and went in and talked to my husband and told him all the details of what had happened. He was understandably upset and said “You can’t drive.” I’m standing there holding my keys and license out to him visibly shaken and crying and he states the obvious.

I place them on the coffee table and go into my studio to do some work. He comes in and tells me I need my license for identification purposes. It was then that I ask him not to do anything with the car yet. That I could at least drive 5 minutes away to the surrounding stores to get small supplies safely enough. We agreed on that compromised only because of this. I seldom if ever do that anyway. He just goes right after work.

So here is something we can talk about tonight along with anything else you might want to talk about. How do we turn this around? This is a site about enabling ourselves. Right? I’m still a young and vibrant person to me but if you take away my wheels and leave me in suburbia I will be like a butterfly whose colors will fade and eventually you will have to pin me to a board someday. It will age me 40 years I think to know that I can never leave my house again on my own. That my identity and my ability to lead my life is by being led by the nose by someone else. I can’t have this happen. I simply can’t. I started out my life this way and there is no way possible that I will end my life under the control and decision making of someone else. I won’t allow it because married or not, this is MY life, this is MY body, this is MY heart, MY soul and spirit that is being locked up.

See you later tonight!!!

Hi!

I bet you thought I’d fallen off the end of the earth or something like that. No such luck. I’m still here and fighting like crazy.

How about you? How have you been? Did everyone get my post about the chat room? It’s right down there on the bottom to my right, the Shout box. Do you see it? I do, but guess what? Because I have such difficulty remembering things, I keep forgetting that I need to be in there! So I believe I missed it yet again. Here I went searching and researching why I couldn’t get into my own chat room because the guy who helped me set up the site is no longer around, and all along we have this Shout box. Then I forget to Shout!

So then, what do I do? Well I have stickies all over the place now to remind me. I have it on my Ipad, on my Iphone, on my bulletin board, and on my husband’s computer. If I miss it this week, I will have to give you all permission to email me and remind me. I don’t know what else I can do. I really want to have this. I think it would be great fun as long as we keep it within the guideline that I set out a week or so ago.

Okay, I’m still in a lot of pain. I still have this pain in my head and in my neck. It’s an awful pain. Sometimes I turn my head suddenly and I suffer for it. I am on a medication called um……Topamax and another called …….sorry, I can’t remember that one, but it’s an NSAID, and still I’m in great pain. It’s relieved for a bit after I take the NSAID where instead of an 8-10 pain it’s more like a 4-6 pain, but it’s always there, then it comes roaring back after a while.

The funny thing is this. One can learn to live with chronic pain,. Did you know that? It sort of becomes part of your makeup in a strange sort of way. In fact, if you don’t have pain, you sit and wonder what is wrong, what is missing? Do you suppose that our bodies are made to withstand pain this way? That something kicks in to help us endure it after awhile? I wonder? Something to think about.

Here is something that is very difficult for me to deal with. I waited three long and guilt-ridden days to tell my husband that I felt that I was a hazard to the world at large and to myself if I were to continue driving long distances, purely for selfish reasons. I didn’t want to give up driving and I knew he would make me give up my keys and license.

I was on my way to teach a class. I became confused and lost. Hey it happens to us as we all know. We lose who we are, why we are, and where we are going, for what, who we are seeing, and where they are at. Right?

It was only because I glanced at the right and saw my knitting bag sitting on the seat that I realized, “oh yeah, I have to teach today.”

Getting my bearing straight, I got comfortable for my 25 minute drive. Suddenly I heard all these car horns going off. I looked up and saw that I was two lanes over and cars were coming at me. I swerved to get out of the way and nearly cause a major car accident on the highway by swerving into the way of another car who had to quickly get out of my way and change lanes.

Not 5 minutes later, the same thing happened and I knew I had to get off the road and take side streets the rest of the way.

My heart was beating so hard when I got off that I pulled over, put my head down on the steering wheel and had myself a good cry. I have developed a type of narcolepsy due to all this and I never know when I’m going to drop off. People tell me that I drop off standing with my eyes wide open and they can tell that I’m not there. They just walk quietly around me till I return and then they tell me that I pick up right where I left off as though nothing had happened.

This driving thing has happened before but not to this extent. I thought it was mostly a vision anomaly because my eyes are not balanced any more. One eye wants to look one way and the other eye has its own mind. I literally have to shake my head to get them to behave. But to be safe, I have not drive to knitting class for over 3 or 4 months now. I decided I would risk it since it had been so long now and that perhaps things weren’t as bad. I was right. They were worse.

I was Having difficulty gauging the distance between cars so that I had to keep slamming on the brakes. Turning corners was a two-wheeler event for me because I kept taking them too fast. I just wasn’t in tune with my car any longer.

But how does one give up the only source of freedom they have? Giving up my transportation living in suburbia would catapult me into living as a geriatric person living in an institutional setting where everything is controlled by someone else. I couldn’t bare that. I came from that growing up. I grew up in a Catholic orphanage where every minute of every day was controlled.

So I fought a battle with myself for a good three long days. What do I do? I didn’t know anyone to talk to except perhaps one person, but they were unavailable, and not only that; why should I put this on their lap?

Stay tuned……I’m so tired, I’ll have to finish this tomorrow…..ok?