Published Articles by Lorna Moorhead
Lorna’s MS articles have been published by HealingWell.com, MS & Life, and Vitality Magazine.
From The Mouths Of ...
What do you call them? You know who I mean. The people who give advice. Call them what you will, uninformed, dense, overly helpful, skeptical, loved ones, dear friends or nuisances. They are the many who think that their Multiple Sclerosis information is cutting edge, never been heard of (least of all by you), and the best way to go. You love them for their intentions and hate them for their persistence.
How many times since your diagnosis of Multiple Sclerosis has this happened to you?
I just read this great article (mm hmm. I have about 50 copies of it in my drawer already.)
I just heard this great radio show (Yes. I have six tapes of it being sent to me from various people.)
I heard of this new (Oh Lord give me strength)
A. Herbal treatment (Causes diarrhea and has not been approved by the FDA. As you were saying?)
B. Diet (Did you say diet? Pass the cheezwiz…)
C. Shock therapy (As if loss of sensation and bladder control weren’t shocking enough.)
They mean well. They love you. You can’t tell them to stop. You can’t tell them to shove it and you can’t get them to understand exactly how it feels to be a person with MS. Besides if they did stop, you’d feel abandoned. So what do you do? I’ll let you in on a few tried and true methods of dealing with TMI (Too Much Information.)
1. Try it. (Hahaha! Sorry I thought I’d start this list off with a little joke.)
2. File it away with the rest of advice. (But of course they’ll want to discuss it with you, so you must at least scan the videotape, radio show, or article, before you enter into this interview.)
3. Politely tell them that "so-in-so" already gave you a copy, and then thank them kindly. (This really gets their goat and only makes them try harder to be the first next time. Might as well have some fun right? No need to mention you never had a copy in the first place.)
4. Open your eyes very wide and while grasping their hand tightly exclaim that you "Just knew (insert odd cure here) was the way to go!"
Sure you could do this, but the best ways I have found to handle the hunter and gatherers of MS info, is to respond in one of these few ways
Calmly tell them that while their concern is appreciated, you have to find your own way to deal with MS and hope that they can continue to help you by understanding and supporting you.
Take the tape, video, or article, and thank them for their concern. Tell them that you have received many different ideas about MS and that although you do not have time to evaluate all of them, you are aware of how much the givers care about you. (This gets you out of reading the stuff.)
This is the most difficult and the one suggestion that has taken me some time to get used to doing: Take the time and actually give it a chance. Read the article. Watch the video. Listen to the tape. Know in your heart that the person who gave it to you is only attempting to help you and is grasping at an understanding of your diagnosis as well. The people, who give you these tips and tapes, are hurting too. Just imagine how you have felt when one of your family or friends has been going through a very rough time. You felt helpless right? You wanted to do something correct?
Do not think of it as people who don’t know any better giving you bad advice, but as people who are in need of your help. They are trying to help you, but they can only do that once you tell them how to. Tell them what you need. Help them understand your diagnosis. You don’t need rescuing from your diagnosis. But they might.
(Besides I don’t believe we have MS etiquette books yet do we?)
How many times since your diagnosis of Multiple Sclerosis has this happened to you?
I just read this great article (mm hmm. I have about 50 copies of it in my drawer already.)
I just heard this great radio show (Yes. I have six tapes of it being sent to me from various people.)
I heard of this new (Oh Lord give me strength)
A. Herbal treatment (Causes diarrhea and has not been approved by the FDA. As you were saying?)
B. Diet (Did you say diet? Pass the cheezwiz…)
C. Shock therapy (As if loss of sensation and bladder control weren’t shocking enough.)
They mean well. They love you. You can’t tell them to stop. You can’t tell them to shove it and you can’t get them to understand exactly how it feels to be a person with MS. Besides if they did stop, you’d feel abandoned. So what do you do? I’ll let you in on a few tried and true methods of dealing with TMI (Too Much Information.)
1. Try it. (Hahaha! Sorry I thought I’d start this list off with a little joke.)
2. File it away with the rest of advice. (But of course they’ll want to discuss it with you, so you must at least scan the videotape, radio show, or article, before you enter into this interview.)
3. Politely tell them that "so-in-so" already gave you a copy, and then thank them kindly. (This really gets their goat and only makes them try harder to be the first next time. Might as well have some fun right? No need to mention you never had a copy in the first place.)
4. Open your eyes very wide and while grasping their hand tightly exclaim that you "Just knew (insert odd cure here) was the way to go!"
Sure you could do this, but the best ways I have found to handle the hunter and gatherers of MS info, is to respond in one of these few ways
Calmly tell them that while their concern is appreciated, you have to find your own way to deal with MS and hope that they can continue to help you by understanding and supporting you.
Take the tape, video, or article, and thank them for their concern. Tell them that you have received many different ideas about MS and that although you do not have time to evaluate all of them, you are aware of how much the givers care about you. (This gets you out of reading the stuff.)
This is the most difficult and the one suggestion that has taken me some time to get used to doing: Take the time and actually give it a chance. Read the article. Watch the video. Listen to the tape. Know in your heart that the person who gave it to you is only attempting to help you and is grasping at an understanding of your diagnosis as well. The people, who give you these tips and tapes, are hurting too. Just imagine how you have felt when one of your family or friends has been going through a very rough time. You felt helpless right? You wanted to do something correct?
Do not think of it as people who don’t know any better giving you bad advice, but as people who are in need of your help. They are trying to help you, but they can only do that once you tell them how to. Tell them what you need. Help them understand your diagnosis. You don’t need rescuing from your diagnosis. But they might.
(Besides I don’t believe we have MS etiquette books yet do we?)
All In My Pretty Little Head
by Lorna Moorhead
June 25, 2000
But you don't look sick...
I can remember exactly when the first symptom hit. Not the symptoms that come and go that you brush off thinking, "It was just a fluke." I mean the first symptom that told me something was wrong.
I was at the computer on a chat channel during the weekend, wasting away my hours. I was alone in the house as my two-year-old son was with his grandmother, and my husband was away to work. I noticed my hands were shaking. My fingers became hard to direct, I began making typos, and then I was vibrating so badly that I couldn't type. I felt confused and weary. People online told me it must be low blood sugar.
Taking their advice, I gobbled down some food and waited for this miracle cure to stop my hands. It didn't. I decided to go to my room and rest. I remember lying on the bed thinking that the soft jolts to the mattress from my hands and now lower arms, felt like one of those massaging hotel beds. I even relaxed enough to giggle about it. After about an hour or two the tremors slowed to a stop. The next day I called the doctor.
Within a week I was convinced I was hypoglycemic. I bought a blood sugar testing machine and walked around with sore fingertips from tracking my blood sugar. I changed my diet and was sure that the doctor was right.
Wrong. I continued to have problems. Besides the shaking, I began to become confused, agitated, and forgetful. I was always tired. Nevertheless, since I was 23 and very healthy, it had to be blood sugar. Or anxiety.
That was the choice of the next doctor I saw. She told me I was anxious. After having panic attacks at age 18, I was well aware of what I felt like when I was anxious and this WAS NOT it. I bluntly told her so. To appease me she gave me a brief neurological examination. (You know, touch your nose, flop your hand back and forth in your palm as if mimicking a dying fish.) So I flopped my hands, tried to walk on my heels and attempted to touch my nose with my eyes closed. I almost fell over and she scheduled me to see a neurologist.
I wasn't due to see the neurologist for a month. In that month, I had already planned a trip to London with my mother. Seeing as how I was in no serious danger, I was allowed to go. At this point, I was beginning to wonder if I had a tumor or epilepsy. I was betting on epilepsy. Yet, seizures or no I was determined to see the Tower of London.
The flight was fine. I didn't get much sleep (who can in those tiny seats?), and I was completely exhausted when we arrived. It took awhile before the hotel man came to pick us up and dragged us to our hotel. Once there, we took a short nap and then forced ourselves up to have some dinner. Besides being tired and cranky, everything was great. The food was better than expected, i had always heard English food was bland, and I loved spending time with my mother, and I was completely excited about our trip. Later that night, after a telephone conversation with my husband that made me a bit homesick, I felt emotionally distraught. I remember thinking that I felt so tired, so drained that I didn't know if I would ever get my energy back. Deciding I just needed some sleep, I dozed off.
It was exactly one hour later. I opened my eyes and looked around my house. I could not understand why my husband had moved the furniture and I was furious. I looked around the room and tried to find him. My head was tight as if someone had strapped a vice on it and everything in the room seemed odd, tilted. Becoming overwhelmed with nausea, I navigated my way through this strange house to the bathroom.
I don't remember exactly what happened, but I must have lowered myself to the floor, as that is where I remember being next. I had finally realized where I was and I had lost bladder control. Scared, embarrassed, and sobbing, I began to run the bath water in the attempt to calm myself and to hide the evidence of my incontinence from my mother. I prayed my mother wouldn't wake up, and then I prayed I wouldn't die. I felt completely betrayed by my body and my life. It felt as if suddenly a giant force was sucking me under and I was powerless to stop it. I began thinking about my son and my husband at home, I cried harder. I was terrified.
Finding myself in a full-blown panic attack, I lost any hope of hiding everything from my mother and woke her up. It was 3 a.m. I sobbed and told her what had happened. Trying to calm me and very confused, my mother assured me it was just jet lag and that I was just tired. I called my husband and sobbed to him. I told him I wanted to come home. He calmly told me that was impossible and to get some sleep. About dawn, I fell into a fitful sleep.
Within 48 hours, I was back home. Three days later, I was in the emergency room, with another bout of incontinence. I also kept having what I called "waves." It would feel as if I was about to black out. I would not be able to speak through them and the best way I could describe the feeling to doctors was like my brain was having a brownout. I kept telling people, "I feel like I am going backward, like I am becoming a baby again or becoming mentally handicapped." I had trouble walking and the rooms always seemed to move around me.
After 13 hours in the emergency room and one CT scan, all they could tell me was that my right side was weak and that I didn't have a tumor. Gee, thanks. I was left to wait for the neurologist appointment. Little did I know the worst was yet to come.
More next week in My Story
June 25, 2000
But you don't look sick...
I can remember exactly when the first symptom hit. Not the symptoms that come and go that you brush off thinking, "It was just a fluke." I mean the first symptom that told me something was wrong.
I was at the computer on a chat channel during the weekend, wasting away my hours. I was alone in the house as my two-year-old son was with his grandmother, and my husband was away to work. I noticed my hands were shaking. My fingers became hard to direct, I began making typos, and then I was vibrating so badly that I couldn't type. I felt confused and weary. People online told me it must be low blood sugar.
Taking their advice, I gobbled down some food and waited for this miracle cure to stop my hands. It didn't. I decided to go to my room and rest. I remember lying on the bed thinking that the soft jolts to the mattress from my hands and now lower arms, felt like one of those massaging hotel beds. I even relaxed enough to giggle about it. After about an hour or two the tremors slowed to a stop. The next day I called the doctor.
Within a week I was convinced I was hypoglycemic. I bought a blood sugar testing machine and walked around with sore fingertips from tracking my blood sugar. I changed my diet and was sure that the doctor was right.
Wrong. I continued to have problems. Besides the shaking, I began to become confused, agitated, and forgetful. I was always tired. Nevertheless, since I was 23 and very healthy, it had to be blood sugar. Or anxiety.
That was the choice of the next doctor I saw. She told me I was anxious. After having panic attacks at age 18, I was well aware of what I felt like when I was anxious and this WAS NOT it. I bluntly told her so. To appease me she gave me a brief neurological examination. (You know, touch your nose, flop your hand back and forth in your palm as if mimicking a dying fish.) So I flopped my hands, tried to walk on my heels and attempted to touch my nose with my eyes closed. I almost fell over and she scheduled me to see a neurologist.
I wasn't due to see the neurologist for a month. In that month, I had already planned a trip to London with my mother. Seeing as how I was in no serious danger, I was allowed to go. At this point, I was beginning to wonder if I had a tumor or epilepsy. I was betting on epilepsy. Yet, seizures or no I was determined to see the Tower of London.
The flight was fine. I didn't get much sleep (who can in those tiny seats?), and I was completely exhausted when we arrived. It took awhile before the hotel man came to pick us up and dragged us to our hotel. Once there, we took a short nap and then forced ourselves up to have some dinner. Besides being tired and cranky, everything was great. The food was better than expected, i had always heard English food was bland, and I loved spending time with my mother, and I was completely excited about our trip. Later that night, after a telephone conversation with my husband that made me a bit homesick, I felt emotionally distraught. I remember thinking that I felt so tired, so drained that I didn't know if I would ever get my energy back. Deciding I just needed some sleep, I dozed off.
It was exactly one hour later. I opened my eyes and looked around my house. I could not understand why my husband had moved the furniture and I was furious. I looked around the room and tried to find him. My head was tight as if someone had strapped a vice on it and everything in the room seemed odd, tilted. Becoming overwhelmed with nausea, I navigated my way through this strange house to the bathroom.
I don't remember exactly what happened, but I must have lowered myself to the floor, as that is where I remember being next. I had finally realized where I was and I had lost bladder control. Scared, embarrassed, and sobbing, I began to run the bath water in the attempt to calm myself and to hide the evidence of my incontinence from my mother. I prayed my mother wouldn't wake up, and then I prayed I wouldn't die. I felt completely betrayed by my body and my life. It felt as if suddenly a giant force was sucking me under and I was powerless to stop it. I began thinking about my son and my husband at home, I cried harder. I was terrified.
Finding myself in a full-blown panic attack, I lost any hope of hiding everything from my mother and woke her up. It was 3 a.m. I sobbed and told her what had happened. Trying to calm me and very confused, my mother assured me it was just jet lag and that I was just tired. I called my husband and sobbed to him. I told him I wanted to come home. He calmly told me that was impossible and to get some sleep. About dawn, I fell into a fitful sleep.
Within 48 hours, I was back home. Three days later, I was in the emergency room, with another bout of incontinence. I also kept having what I called "waves." It would feel as if I was about to black out. I would not be able to speak through them and the best way I could describe the feeling to doctors was like my brain was having a brownout. I kept telling people, "I feel like I am going backward, like I am becoming a baby again or becoming mentally handicapped." I had trouble walking and the rooms always seemed to move around me.
After 13 hours in the emergency room and one CT scan, all they could tell me was that my right side was weak and that I didn't have a tumor. Gee, thanks. I was left to wait for the neurologist appointment. Little did I know the worst was yet to come.
More next week in My Story
Headache My A**, The Spinal Tap Saga
by Lorna Moorhead
November 3, 2000
Continued from Hokey Pokey..
I had made it through the lumbar puncture. The nurses sent me home that Friday and told me simply, "If your head hurts lay down." Aching and woozy from laying on my back all day, my father and I hobbled out of the hospital and headed to his house. We tried to keep me semi-reclined in the car and like a child afraid to peek under a bandage to see the wound, I kept my back arched, afraid that touching the seat would send some sort of un-godly pain down my spine.
In celebration of my braveness my father treated me to some horribly greasy fast food and movie rental. We then headed to his house where I casually reclined, half sitting-half laying on the couch. My head throbbed only once in awhile but by the end of the night I was laying down most of the time. Yet, I continued to get up and down to go to the bathroom and the fridge for snacks.
By Sunday morning at 5am I could no longer move without pain. I had the spinal headache. (Headache my a**, it should be referred to as the "My brain is pounding against the inside of my skull, I'm going to vomit, my ears are exploding, are my eyes hanging out of their sockets? Headache.")
Unable to even sit up, my father called for an ambulance and off we went back to the hospital. The kind hospital staff brought me in the emergency room and then told me about the IV they were going to start. (Why is it they always tell you about something like this and then leave the room for about 10 minutes? I think they sit back somewhere and giggle as your pulse shoots in anticipation of having a needle rammed into the back of your hand. And I do mean RAMMED, they always some nurse who must have trained shooting Army men lined in a row. I can picture her waddling down the curtained row in the hospital shoving IV's in and yelling "NEXT!")
Soon after my second poke in one weekend, they wheeled me to a room upstairs. It became apparent I was going to stay. Soon, my doctor arrived looking irritated.
"Well I see someone didn't stay down for 24hrs." he quipped. My eyes widened.
"No-one said to stay down! They said go home and lay down if your head hurts." I became ready to strangle the nurses. My doctor nodded and then leaned over my head, pulling away my pillow.
"Sorry you need to be completely flat. Tomorrow you can go home." With this, he rushed out of the room, hopefully to go be-head a nurse.
My father made himself comfortable on the couch and I lay unmoving, my back and head pounding out what might have been Morse code for "You should of stayed down, you should of stayed down." I winced and took advantage of the one vice you can indulge in at hospitals. Drugs.
While loading my IV, the nurse told me that she was giving me only a small amount of the painkiller as it had a "tendency to make people queasy."
An hour later I had become Linda Blair and was doing my best impression of the Exorcist. Laying sideways on the bed, a metal bowl shoved up to face, my head no longer pounded but was on fire. My eyes were unable to stay open or focus, I fought for what felt like my sanity. Instinctively panic set in and with it the fight or flight syndrome. I became convinced that I had to get away from the horrible hospital. Not feeling any pain, I sat up and begged my father to ask them to "let me go." He tried to no avail. Not able to think clearly and only aware that my mind was racing while my body was numb, I threatened to rip out my IV and walk home. The nurse did not believe me. (Plus she had a look on her face that told me if I did try, she would drag me back by my scruff.)
She talked me through some meditations to calm me and we waited for the medication to wear off. By nightfall , the insanity had begun to pass and the aches had come back full force. My legs and back cramped as if I had spent the day hiking; and the idea of staying the night terrified me. My one consolation was my husband. He was coming back that night.
After finding out what had happened, he came straight to the hospital and relieved my worn out father, who after battling with his possessed daughter was quite willing to exit the room. Calmed by my husband's presence and with the help of a regular old-fashioned sleeping pill, I made it through the night.
The next morning, though my head still ached when I raised it, I was determined to go home. The nurses let me slowly inch my bed to a sitting position and I waited anxiously for my doctor. He rushed in as if it had only been ten minutes since he last saw me and not a hideous 24 hours. He stopped and frowned when he saw me propped up.
"What are you doing up?" He growled.
"The nurses said I could it's been 24 hours." I felt like I was a child that no-one would believe. My voice even cracked. I clutched my fists in the sheets incensed that I was being blamed for someone else's mistake. He sighed and nodded. I began to wonder if he knew something about this hospital's rate of care that I did not.
"Are you feeling better?"
"I'm fine" I replied a bit too quickly. He arched an eyebrow and then smiled.
"Okay but you go home and STAY down." He wagged a finger at me. I nodded. With that the wheelchair came in and my exit began. Although I almost fainted from the throbbing which partially remained, I had now become a bit paranoid of this hospital and wanted OUT. This had not been the touching experience of my son's birth. This had been a nightmare. I went home, rested, acknowledged the fact that I now knew more about bed pans than I ever wanted to know, and was comforted by the notion that I would never have to go through the horrible experience again.
Boy was I in for a shock….
Stay tuned for "What do you mean they LOST it?!"
November 3, 2000
Continued from Hokey Pokey..
I had made it through the lumbar puncture. The nurses sent me home that Friday and told me simply, "If your head hurts lay down." Aching and woozy from laying on my back all day, my father and I hobbled out of the hospital and headed to his house. We tried to keep me semi-reclined in the car and like a child afraid to peek under a bandage to see the wound, I kept my back arched, afraid that touching the seat would send some sort of un-godly pain down my spine.
In celebration of my braveness my father treated me to some horribly greasy fast food and movie rental. We then headed to his house where I casually reclined, half sitting-half laying on the couch. My head throbbed only once in awhile but by the end of the night I was laying down most of the time. Yet, I continued to get up and down to go to the bathroom and the fridge for snacks.
By Sunday morning at 5am I could no longer move without pain. I had the spinal headache. (Headache my a**, it should be referred to as the "My brain is pounding against the inside of my skull, I'm going to vomit, my ears are exploding, are my eyes hanging out of their sockets? Headache.")
Unable to even sit up, my father called for an ambulance and off we went back to the hospital. The kind hospital staff brought me in the emergency room and then told me about the IV they were going to start. (Why is it they always tell you about something like this and then leave the room for about 10 minutes? I think they sit back somewhere and giggle as your pulse shoots in anticipation of having a needle rammed into the back of your hand. And I do mean RAMMED, they always some nurse who must have trained shooting Army men lined in a row. I can picture her waddling down the curtained row in the hospital shoving IV's in and yelling "NEXT!")
Soon after my second poke in one weekend, they wheeled me to a room upstairs. It became apparent I was going to stay. Soon, my doctor arrived looking irritated.
"Well I see someone didn't stay down for 24hrs." he quipped. My eyes widened.
"No-one said to stay down! They said go home and lay down if your head hurts." I became ready to strangle the nurses. My doctor nodded and then leaned over my head, pulling away my pillow.
"Sorry you need to be completely flat. Tomorrow you can go home." With this, he rushed out of the room, hopefully to go be-head a nurse.
My father made himself comfortable on the couch and I lay unmoving, my back and head pounding out what might have been Morse code for "You should of stayed down, you should of stayed down." I winced and took advantage of the one vice you can indulge in at hospitals. Drugs.
While loading my IV, the nurse told me that she was giving me only a small amount of the painkiller as it had a "tendency to make people queasy."
An hour later I had become Linda Blair and was doing my best impression of the Exorcist. Laying sideways on the bed, a metal bowl shoved up to face, my head no longer pounded but was on fire. My eyes were unable to stay open or focus, I fought for what felt like my sanity. Instinctively panic set in and with it the fight or flight syndrome. I became convinced that I had to get away from the horrible hospital. Not feeling any pain, I sat up and begged my father to ask them to "let me go." He tried to no avail. Not able to think clearly and only aware that my mind was racing while my body was numb, I threatened to rip out my IV and walk home. The nurse did not believe me. (Plus she had a look on her face that told me if I did try, she would drag me back by my scruff.)
She talked me through some meditations to calm me and we waited for the medication to wear off. By nightfall , the insanity had begun to pass and the aches had come back full force. My legs and back cramped as if I had spent the day hiking; and the idea of staying the night terrified me. My one consolation was my husband. He was coming back that night.
After finding out what had happened, he came straight to the hospital and relieved my worn out father, who after battling with his possessed daughter was quite willing to exit the room. Calmed by my husband's presence and with the help of a regular old-fashioned sleeping pill, I made it through the night.
The next morning, though my head still ached when I raised it, I was determined to go home. The nurses let me slowly inch my bed to a sitting position and I waited anxiously for my doctor. He rushed in as if it had only been ten minutes since he last saw me and not a hideous 24 hours. He stopped and frowned when he saw me propped up.
"What are you doing up?" He growled.
"The nurses said I could it's been 24 hours." I felt like I was a child that no-one would believe. My voice even cracked. I clutched my fists in the sheets incensed that I was being blamed for someone else's mistake. He sighed and nodded. I began to wonder if he knew something about this hospital's rate of care that I did not.
"Are you feeling better?"
"I'm fine" I replied a bit too quickly. He arched an eyebrow and then smiled.
"Okay but you go home and STAY down." He wagged a finger at me. I nodded. With that the wheelchair came in and my exit began. Although I almost fainted from the throbbing which partially remained, I had now become a bit paranoid of this hospital and wanted OUT. This had not been the touching experience of my son's birth. This had been a nightmare. I went home, rested, acknowledged the fact that I now knew more about bed pans than I ever wanted to know, and was comforted by the notion that I would never have to go through the horrible experience again.
Boy was I in for a shock….
Stay tuned for "What do you mean they LOST it?!"
Bats In The Belfry
by Lorna Moorhead
Recognize...
Cognitive problems. Most people with MS experience this everyday. For quite some time, doctors did not believe that MS effected the brain in this way. Thankfully for those of us with MS, they've changed their minds.
After we developed Multiple Sclerosis, our minds changed too. Things became fuzzy and difficult. Some of us found ourselves lost in our own homes or forgetting simple words. When faced with bills or applications, we became reduced to frustrated tears. Even though living with these cognitive problems can be rough and sometimes very depressing, there are ways to adapt.
The first thing to do is learn to laugh. Out of all my symptoms, my cognitive screw-ups have been the easiest to laugh at. (Of course, my husband didn't think the melting of our spatula because I left the stove on was funny, but it does look rather abstract and amusing these days.) How else can we get by then to learn to laugh at ourselves? Honestly, don't you feel a bit silly when you pour coffee in your cereal and milk in your coffee cup? Laugh...
On the way to see my neurologist, I became very hot and thirsty. As we entered the building, my husband noticed that I was avidly searching for something.
"What are you looking for hon?" He asked leading me towards the elevator.
"I'm looking for a sprinkler." I replied matter-of-factly. I did not notice my husband's eyebrows shoot up in confusion.
"Why?" He asked calmly.
"Because I'm thirsty. You'd think they had sprinklers in an office building so someone could get a drink of water." I replied still looking around. My husband only smiled to himself and made an affirmative noise by humming.
When we reached the elevator, I sighed deeply realizing I would not find what I was looking for. As we stepped in, I huffed loudly, "I can't believe they don't have any sprinklers in here!"
As the doors to the elevator began to close, my brain suddenly repeated the last few sentences in my head. I knew something was wrong with them. There was a word out of place. My husband remained silent beside me as if nothing out the ordinary had happened.
When the doors opened again, it was as if my brain had opened it's own doors. The realization of what I had been saying swept through me and I began to giggle.
"DRINKING FOUNTAIN!" I shouted slapping my hand to my forehead. I looked at my husband and started to laugh. "That whole time I said I was looking for a sprinkler I had meant drinking fountain. Gosh that's funny!" I stepped out of the elevator with my husband behind me. I paused and looked over my shoulder at my mate. "Why didn't you correct me? You didn't say a word!"
He simply smiled and placed an arm about my waist smiling. " I knew what you meant. Besides, they both give out water. It made sense." Relax...
It doesn't bother me that I call my cats chickens sometimes or cannot remember the dog's name. In fact, my son burst out laughing when mommy called the dog "who-sit". I don't cry when I can't concentrate on my favorite book long enough to read a few pages. I don't scream when I found I've put the milk in the cupboard again. It doesn't upset me that my husband refers to me as "the only woman who can stand in the shampoo aisle for twenty minutes reading the back of one bottle." (By the way, have you ever read those things? Do you realize what you're putting in your hair? Herbal my a**!)
I just laugh. I shake my head, smile and remember the words of a wise man that counseled me once:
"If you try to battle and beat down your MS, every time you will loose. But if you accept it as part of yourself and work with it, you will find yourself less lost, angry, and tired."
He was right. Why waste the time crying, when I could be laughing? Why frustrate myself with the grocery shopping when my husband could do it, and I could commune with a bottle of strawberry scented Suave? Why tense up and break down when I could not remember my son's birth-date when instead, I could take a deep breath, relax my shoulders and know it would come if I just became still.
When you find yourself battling cognitive problems and becoming upset, remember this: Stillness and laughter. If you go with the flow of the river, you will be fine. If you panic and fight the current, you will only be sucked under. You cannot change the course of this river and you cannot change how fast or slow the current moves, but you can choose to relax. You can choose to be tickled by the water rushing around you. You can choose to smile into the sun and not be burned.So why not try it?
Resources and references:Recently the magazine Inside MS, circulated by the National Multiple Sclerosis Society, ran a whole section on cognitive changes. To get your copy of Inside MS check out their web site: www.nmss.org
Recognize...
Cognitive problems. Most people with MS experience this everyday. For quite some time, doctors did not believe that MS effected the brain in this way. Thankfully for those of us with MS, they've changed their minds.
After we developed Multiple Sclerosis, our minds changed too. Things became fuzzy and difficult. Some of us found ourselves lost in our own homes or forgetting simple words. When faced with bills or applications, we became reduced to frustrated tears. Even though living with these cognitive problems can be rough and sometimes very depressing, there are ways to adapt.
The first thing to do is learn to laugh. Out of all my symptoms, my cognitive screw-ups have been the easiest to laugh at. (Of course, my husband didn't think the melting of our spatula because I left the stove on was funny, but it does look rather abstract and amusing these days.) How else can we get by then to learn to laugh at ourselves? Honestly, don't you feel a bit silly when you pour coffee in your cereal and milk in your coffee cup? Laugh...
On the way to see my neurologist, I became very hot and thirsty. As we entered the building, my husband noticed that I was avidly searching for something.
"What are you looking for hon?" He asked leading me towards the elevator.
"I'm looking for a sprinkler." I replied matter-of-factly. I did not notice my husband's eyebrows shoot up in confusion.
"Why?" He asked calmly.
"Because I'm thirsty. You'd think they had sprinklers in an office building so someone could get a drink of water." I replied still looking around. My husband only smiled to himself and made an affirmative noise by humming.
When we reached the elevator, I sighed deeply realizing I would not find what I was looking for. As we stepped in, I huffed loudly, "I can't believe they don't have any sprinklers in here!"
As the doors to the elevator began to close, my brain suddenly repeated the last few sentences in my head. I knew something was wrong with them. There was a word out of place. My husband remained silent beside me as if nothing out the ordinary had happened.
When the doors opened again, it was as if my brain had opened it's own doors. The realization of what I had been saying swept through me and I began to giggle.
"DRINKING FOUNTAIN!" I shouted slapping my hand to my forehead. I looked at my husband and started to laugh. "That whole time I said I was looking for a sprinkler I had meant drinking fountain. Gosh that's funny!" I stepped out of the elevator with my husband behind me. I paused and looked over my shoulder at my mate. "Why didn't you correct me? You didn't say a word!"
He simply smiled and placed an arm about my waist smiling. " I knew what you meant. Besides, they both give out water. It made sense." Relax...
It doesn't bother me that I call my cats chickens sometimes or cannot remember the dog's name. In fact, my son burst out laughing when mommy called the dog "who-sit". I don't cry when I can't concentrate on my favorite book long enough to read a few pages. I don't scream when I found I've put the milk in the cupboard again. It doesn't upset me that my husband refers to me as "the only woman who can stand in the shampoo aisle for twenty minutes reading the back of one bottle." (By the way, have you ever read those things? Do you realize what you're putting in your hair? Herbal my a**!)
I just laugh. I shake my head, smile and remember the words of a wise man that counseled me once:
"If you try to battle and beat down your MS, every time you will loose. But if you accept it as part of yourself and work with it, you will find yourself less lost, angry, and tired."
He was right. Why waste the time crying, when I could be laughing? Why frustrate myself with the grocery shopping when my husband could do it, and I could commune with a bottle of strawberry scented Suave? Why tense up and break down when I could not remember my son's birth-date when instead, I could take a deep breath, relax my shoulders and know it would come if I just became still.
When you find yourself battling cognitive problems and becoming upset, remember this: Stillness and laughter. If you go with the flow of the river, you will be fine. If you panic and fight the current, you will only be sucked under. You cannot change the course of this river and you cannot change how fast or slow the current moves, but you can choose to relax. You can choose to be tickled by the water rushing around you. You can choose to smile into the sun and not be burned.So why not try it?
Resources and references:Recently the magazine Inside MS, circulated by the National Multiple Sclerosis Society, ran a whole section on cognitive changes. To get your copy of Inside MS check out their web site: www.nmss.org
A.B.C. Anecdote
By: Lorna J. Moorhead
I am starting my fourth year with Multiple Sclerosis and am on my second ABC medication to slow the progression. The first ABC medication I was prescribed was Copaxone. I have found that this is often the first choice for newbies with MS. My experience with Copaxone was not pleasant and, I feel did my MS no good.
At first with Copaxone I was hyped. It was for my own good and it was going to stop my MS in its tracks, or at least back it off. Then came my first shot, Painless! I was thrilled. I was not thrilled however with the large, itchy, sore welt that popped out on my leg. Like a good girl I called the people who make Copaxone to find out how to better avoid this welt. They gave me lots of helpful ideas, none of which worked for me. I have very sensitive skin and it just seemed the Copaxone wasn’t mixing well with me.
I am not a headache-y person. I often get sinus pain during the winter but not back to back headaches in the middle of summer. Essentially I felt like a freak. I was popping Motrin and scratching my welts, and I had to stick myself everyday.
The kicker for me was reading the stats on Copaxone. Basically, in laymen’s terms, they have no idea how it works, they have an idea, some decoy theory, but no real hard data. Gee, this happens so often in MS you might think there was some sort of conspiracy. JK ANYHOW, the results for the lessening of relapses in people is not all that stunning I recall it being somewhere around only 30% of the patients. Side effects range from site reactions to headaches, etc. At that point after getting huge welts, headaches, and seeing no improvement in and the creation of new symptoms in my Multiple Sclerosis. I lost faith in Copaxone. For some people it works miracles for me it felt like I’d do just as well shooting myself up with water everyday. (Really stingy, welty water.)
My neuro after observing the new lesions I had, switched me to Betaseron a once every other day subcutaneous shot (only under the skin not into the muscle). Betaseron actually has a firm idea about what their medicine does. It’s an immunosuppressant. Basically it tells your immune system to cool it and quit chomping on your myelin. Because it attempts to slow your immune system down, it makes sense that the first thing your body does when injected with Betaseron is to fight back. So the most common side effects are flu like reactions. Boy they weren’t kidding. The first night I felt fine until about 2 hours later when I was running a temp, had aches and pains, plus chills.
The positive side was that I quickly learned to take my Tylenol a ½ hour before my shot. Then every 4 hours after. I try to take the shot at night and sleep through the side effects. In my case the side effects have backed way off in fact there are days when I don’t experience them with the shot at all. My only down side is the nasty bruising it leaves. I’m working now with different ways to alleviate this bruising, but needless to say my bathing suit better go past my knees this summer!
Overall Betaseron has improved my MS. It has helped beat back one of my worst symptoms, fatigue. Although I am currently experiencing a relapse, I do not feel it is because Betaseron has not done its job, more that my MS is not the typical relapsing/remitting with long periods of remission. I know that some people cannot tolerate the side effects of the immuno-suppressant medications (Avonex, Betaseron), but for me they have been very helpful and I have seen improvements. All Copaxone ever did was make me feel miserable. Plus once I lost faith in the Copaxone I doubt it would have been able to help anyhow. I put a lot of stock in the power of faith. If you don’t believe in your medicine, how can you ever think it’s going to work?
Anecdote from Lorna J. Moorhead, founder MS MOMS and author Coffee in the Cereal: the First Year with Multiple Sclerosis. Lorna’s MS articles have been published by HealingWell.com, MS & Life, and Vitality Magazine.
I am starting my fourth year with Multiple Sclerosis and am on my second ABC medication to slow the progression. The first ABC medication I was prescribed was Copaxone. I have found that this is often the first choice for newbies with MS. My experience with Copaxone was not pleasant and, I feel did my MS no good.
At first with Copaxone I was hyped. It was for my own good and it was going to stop my MS in its tracks, or at least back it off. Then came my first shot, Painless! I was thrilled. I was not thrilled however with the large, itchy, sore welt that popped out on my leg. Like a good girl I called the people who make Copaxone to find out how to better avoid this welt. They gave me lots of helpful ideas, none of which worked for me. I have very sensitive skin and it just seemed the Copaxone wasn’t mixing well with me.
I am not a headache-y person. I often get sinus pain during the winter but not back to back headaches in the middle of summer. Essentially I felt like a freak. I was popping Motrin and scratching my welts, and I had to stick myself everyday.
The kicker for me was reading the stats on Copaxone. Basically, in laymen’s terms, they have no idea how it works, they have an idea, some decoy theory, but no real hard data. Gee, this happens so often in MS you might think there was some sort of conspiracy. JK ANYHOW, the results for the lessening of relapses in people is not all that stunning I recall it being somewhere around only 30% of the patients. Side effects range from site reactions to headaches, etc. At that point after getting huge welts, headaches, and seeing no improvement in and the creation of new symptoms in my Multiple Sclerosis. I lost faith in Copaxone. For some people it works miracles for me it felt like I’d do just as well shooting myself up with water everyday. (Really stingy, welty water.)
My neuro after observing the new lesions I had, switched me to Betaseron a once every other day subcutaneous shot (only under the skin not into the muscle). Betaseron actually has a firm idea about what their medicine does. It’s an immunosuppressant. Basically it tells your immune system to cool it and quit chomping on your myelin. Because it attempts to slow your immune system down, it makes sense that the first thing your body does when injected with Betaseron is to fight back. So the most common side effects are flu like reactions. Boy they weren’t kidding. The first night I felt fine until about 2 hours later when I was running a temp, had aches and pains, plus chills.
The positive side was that I quickly learned to take my Tylenol a ½ hour before my shot. Then every 4 hours after. I try to take the shot at night and sleep through the side effects. In my case the side effects have backed way off in fact there are days when I don’t experience them with the shot at all. My only down side is the nasty bruising it leaves. I’m working now with different ways to alleviate this bruising, but needless to say my bathing suit better go past my knees this summer!
Overall Betaseron has improved my MS. It has helped beat back one of my worst symptoms, fatigue. Although I am currently experiencing a relapse, I do not feel it is because Betaseron has not done its job, more that my MS is not the typical relapsing/remitting with long periods of remission. I know that some people cannot tolerate the side effects of the immuno-suppressant medications (Avonex, Betaseron), but for me they have been very helpful and I have seen improvements. All Copaxone ever did was make me feel miserable. Plus once I lost faith in the Copaxone I doubt it would have been able to help anyhow. I put a lot of stock in the power of faith. If you don’t believe in your medicine, how can you ever think it’s going to work?
Anecdote from Lorna J. Moorhead, founder MS MOMS and author Coffee in the Cereal: the First Year with Multiple Sclerosis. Lorna’s MS articles have been published by HealingWell.com, MS & Life, and Vitality Magazine.