Emotional issues in MS are extremely difficult to cope with, adjust to and learn to accept. I feel an entire course on adjusting to an MS diagnosis should be offered on this subject alone! This is not to say that other illnesses, whether chronic or otherwise are not devastating, but there must be a reason why MS is the one in which there are the most clinically depressed people and the highest suicide rate.
When I was first diagnosed in 1990, I was completely lost and did not feel as if I needed to only step over a speed bump to deal with it, but felt I had just hit a brick wall. I was completely torn apart by my diagnosis and had no idea what to do, where to turn or how to handle such a life changing illness that I fell into a deep depression where no one could reach me. I was already suffering from low self-esteem and self-hatred so to have this on top of everything was basically too much for me to handle and I found myself on a downward spiral to places I wish I had never gone. The depression over my diagnosis was so overwhelming, the MS was attacking my legs very violently, my vision was fading quickly that my brain could not deal with the pain all this brought so I tried to end my life many times. I am not proud of the way I handled the MS in my early days, but it was the only way I could think of how to do things at the time and I have grown much since then.
I feel my first MS symptom was depression and I had this since I was around 14 or 15 years old but was never treated for this condition until I was 20. By the time I was diagnosed with MS, I was already on an antidepressant but struggled in knowing I would need to take that pill every day for the rest of my life. I eventually accepted this, but not until my 30's, and am much happier since understanding that being clinically depressed is something that is not my fault but merely a condition that is completely out of my control. It is no different than having MS or being diabetic. Without my medication, I will die. Plain and simple. One pill per day equals a healthy, clear thinking Lucy. And honestly, no one on earth deserves to feel as I did before I was medicated. The thoughts that would go through my head, the pain I felt inside my mind, the hatred that resided within me, are things not one person on earth should ever feel. This is part of what MS did to me and it is really the one thing I have been able to control and for this, I am happy beyond belief.
OK, so according to what I found on the National MS Society's webpage http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/emotional-changes/index.aspx
In addition to its physical symptoms, MS may have profound emotional consequences. At first, it may be difficult to adjust to the diagnosis that is unpredictable, has a fluctuating course, and carries a risk of progressing over time to some level of physical disability. Lack of knowledge about the disease adds to the anxieties commonly experienced by people who are newly diagnosed. In addition to these emotional reactions to the disease, demyelination and damage to nerve fibers in the brain can also result in emotional changes. Some of the medications used in MS-- such as corticosteroids-- can also have significant effects on the emotions.
Some of the emotional changes observed in MS include the following:
-- Major depressive episodes as well as less severe depressive symptoms
-- Grieving for losses related to the disease
-- Stress and reactions to stressful situations
-- Generalized distress and anxiety
-- Emotional lability or mood swings
-- Pseudobulbar Affect (uncontrollable laughing and/or crying)
-- Inappropriate behavior such as sexual aggressiveness
"Depression" is a term that people apply to a wide variety of emotional states. These may range from feeling down for a few hours on a given day to severe clinical depression that may last for several months. People with MS and all those closely associated with them should be aware that depression in its various forms is common during the course of multiple sclerosis. In fact, studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or even in persons with other chronic, disabling conditions. Depression does not indicate weak character and it should not be considered something shameful that needs to be hidden. Depression is not something that a person can control or prevent by willpower or determination. In its most severe forms, depression appears to be a chemical imbalance that may occur at any time, even when life is going well. The most effective treatment for depression is a combination of psychotherapy and antidepressant medication. Although support groups may be helpful for less severe depressive symptoms and generalized distress, they are no substitute for intensive clinical treatment.
Persons with MS often experience losses-- for example of the ability to work, to walk, or to engage in certain leisure activities. The process of mourning for these losses may resemble depression. However, grief is generally time-limited and resolves on its own. Moreover, a person experiencing grief may at times be able to enjoy some of life's activities. Clinical depression is more persistent and unremitting, with continuous symptoms lasting at least two weeks. Grieving is generally related to changes in self-image triggered by the disease-- for example, no longer being able to think of oneself as an athlete. However, this process seems to be evolutionary and, with time and adaptive coping strategies, the individual can develop an altered self-image.
Grief generally resolves with time even without treatment. However, supportive counseling, support groups, as well as an understanding and supportive environment can help the process along.
Life is full of stress and MS generally adds a hefty dose of disease-related stress to the mix. MS is unpredictable and just anticipating the next exacerbation can be a significant source of stress. MS can also lead to some major life changes such as loss of mobility and interference with work.. Thus the person with MS faces significant challenges in coping with a potentially stressful life.
Stress has also been cited as a possible precipitant of the onset of MS or a trigger for exacerbation. Studies of the effects of stress on MS, however, have had conflicting results. It is important to not fall into the trap of trying to "avoid stress," a nearly impossible task given the realities of life. Moreover, family and friends should not make the mistake of feeling guilty because they think they may have "created stress" in the person's life. Stress is part of the reality of living and probably the best approach, rather than trying to avoid it, is to learn how best to manage and cope with it.
Stress-management programs are readily available and have become an accepted part of the treatment of many medical disorders. Professional counseling as well as support groups can also help in learning how better to cope with stress.
Reading all that information from the National MS Society was very overwhelming, even for me and I've been dealing with MS for what seems like a lifetime. The best advice I can give is simply this. Life was meant to be lived, not merely survived. Life is difficult and stressful at different degrees for everyone and we can't allow it to devastate us to the degree of it taking away our will to live or crippling us mentally. MS is now a part of our lives and the most we can do is learn to make room for it in our lives and accept it to the best of our abilities.
Cognitive and emotional disturbances.
So today is the day I attack the MS symptom I find most troublesome. Cognitive issues! When the MS hit me in my early 20's, I couldn't imagine anything worse than losing my legs until I started having trouble using my hands. But all this paled in comparison with losing some of my cognitive function. It almost seemed as if from one day to the next, my short term memory faded away into nothingness.
It's strange how I can recall certain things happening at the time my memory began to vanish, yet at the time, I couldn't remember hardly anything. For example there was a day, about ten years ago, when I called my mom maybe four or five times within a few minutes of hanging up with her to tell her the exact same thing. I don't remember doing that, but I do know that it was the day my mom insisted I start writing things down and use my dry-erase board to keep track of the last time I had called. It was at that time when I started using Post-It Notes as little reminders for many things and stick them on the outside of my computer monitor.
The scariest incident was about eight years ago, when I had decided to go back to a local junior college. I thought that it would, perhaps, help in strengthening my cognitive thinking. I recall driving home from class and was nearing my exit (I have to drive on the interstate for only a few seconds to get to my exit) when I became completely disoriented but didn't realize it. I kept driving forward for probably at least a half hour to forty-five minutes before I questioned if I even lived so far from town or not. I was frightened but had no idea what to do, where I was, or even who to call. This was before I had a cell phone but even if I had had one, I don't think I would have had the presence of mind to use it. How I eventually got home, I do not know. What I remember is pulling into my driveway quite late that evening, in tears, walking into the house and hugging my girls as I honestly did not think I would ever see them again! After this incident, I dropped a couple classes as I realized it was too much for me and it would be better to concentrate on two classes than make myself crazy with four.
I was evaluated by a psychiatrist at Rush Hospital in Chicago in 2006 or '07. I had gone to see an MS specialist and agreed to see the psychiatrist, too, but mostly out of curiosity. I found his analysis not only amusing, but he also justified many of my behaviors. He read three paragraphs and asked what I could remember and in classic "MS form," I had some recollection of the first and third paragraphs but the second one did not exist in my memory. The only reason I found it amusing was that for some time before seeing him, I had been having problems remembering lists of items of more than two things people would tell me. Finally, justification! It wasn't that I was not concentrating or didn't care. It really was my MS! I'm not one to blame things on my MS but this time, I had reason to do so. But enough of my own personal stories.. I'll give some facts as stated on the Multiple Sclerosis International Federation site: http://www.msif.org/en/about_ms/ms_by_topic/cognitive_problems/
It is now recognized that MS may cause problems with memory, planning, foresight, and judgment. Studies have shown that minor defects in cognition are quite common (up to 70%), even in early MS (up to 50%) . Approximately 10% of people with MS will have fairly serious cognitive difficulties. Dementia can be an accompaniment of severe disabling MS of long-term duration.
The most frequent cognitive abnormalities in MS are subtle defects in abstraction, memory, attention and word finding. They are usually associated with emotional lability and decreased speed on information processing. Thought processes of the brain are interconnected to the conscious areas of the brain via myelinated nerves. There can be problems transporting memories to consciousness and processing of thoughts…. creating difficulties with concentration and reasoning.
A number of compensatory techniques can help with the cognitive problems of MS. First, the difficulties need to be identified and their extent measured and considered in the context of the person's individual circumstances. This is done through testing, either by a speech pathologist or more formally by a neuropsychologist. It should be remembered that some tasks and occupations need an excellent memory while others do not. Nobody's memory is perfect and everyone suffers from memory lapses and occasional confusion. Stress, anxiety, and fatigue all decrease cognition, especially memory. Poor concentration may add to the problem. Depression must be treated. A person with MS often does not recognize his or her depression but may respond to medication and therapy. Psychological tests may be necessary to make the diagnosis of depression.
The following strategies have been found to be helpful in managing cognitive problems:
- Make lists - shopping lists, lists of things to do, and so forth.
- Use a calendar for appointments and reminders of special days.
- Establish a memory notebook to log daily events, reminders, and/or messages from family and friends.
- Use a tape recorder to help remember information or make up lists.
- Organize your environment so that things remain in familiar places.
- Carry on conversations in quiet places to minimize environmental distractions.
- Ask people to keep directions simple.
- Repeat information and write down important points.
- Establish good eye contact during any discussion.
And then there's the second part of this category, emotional disturbances. Yeah. I think I'll get into this one tomorrow! I actually have a longer list to add to what I've already gone through anyway, so imagine all the fun we'll have together! But I do want to add this. I realize how overwhelming all these facts are and how terribly frightening it all becomes when you are newly diagnosed or know someone facing MS. As hard as it may be some days, the important thing is to not focus on the MS every moment of every day. There is beauty in each day. Focus on the wonderful aspects of your life that kept you going before your diagnosis, or find new meaning in activities you were afraid to try before. You are not your MS. MS is merely a small part of you but it does not define who you are. Please, never forget this.
Before I continue where I left off with the MS symptom list, I would like to revisit one of the symptoms I did not give enough attention to, and that is optic neuritis. I only experienced this once, back in 1990. It was the first indication that I could possibly have MS but since it has not affected me since then, I did not list how troublesome it really is and I apologize for this.
Optic neuritis. Ironically, I was not satisfied with what I found on the National Multiple Sclerosis Society's website, so on to find a better site and I came across a very informative one at:
http://www.mult-sclerosis.org/opticneuritis.html
Optic Neuritis (ON) is an inflammation, with accompanying demyelination, of the Optic Nerve (Cranial Nerve II) serving the retina of the eye.
The main symptoms of Optic Neuritis are:
-- loss of visual acuity (blurring of vision) which occurs in around 58% of ON cases. This can range from mild blurring in 34% of cases, through moderate loss of acuity in 12%, to severe or total loss of light perception (complete blindness in 54% of cases.
-- eye pain occurs in 53% to 88% of ON presentations. (please check the above mentioned website for the breakdown of the different types of pain)
-- Dyschromatopsia (reduced color vision) occurs in 100% of ON cases.
-- movement and sound phosphenes (visual flashing sensations brought about by side-to-side movement or sound) often occur with ON.
-- Uhthoff's syndrome, the worsening of symptoms with heat of exhaustion, is present in about 58% of cases of ON.
Optic neuritis is obviously something many of us with MS have gone through and it is hardly easy to deal with as it can become rather painful and disrupts our lives terribly.
Sexual dysfunction. No one really likes to think about losing this part of themselves and I must admit that I've been mostly lucky in this regard. There have been times, however, when in the middle of having intercourse I have suddenly become too numb to enjoy it anymore but continue for the sake of my partner. The way my body has been feeling lately, I wonder if I would be able to enjoy anything sexual at this point but then again, I'm open to try!
According to the National MS Society:
Sexual problems are often experienced by people with MS, but they are very common in the general population as well. Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along nerves running through the spinal cord. If MS damages these nerve pathways, sexual response-- including arousal and orgasm-- can be directly affected. Sexual problems also stem from MS symptoms such as fatigue or spasticity, as well as from psychological factors relating to self-esteem and mood changes.
In a recent study, 63% of people with MS reported that their sexual activity had declines since their diagnosis. Other surveys of persons with MS suggest that as many as 91% of men and 72% of women may be affected by sexual problems. Ignoring these problems can lead to major losses in quality of life.
In women, symptoms include:
-- reduced sensation in the vaginal/clitoral area, or painfully heightened sensation
-- vaginal dryness
-- trouble achieving orgasm
-- loss of libido
In men, symptoms include:
-- difficulty achieving or maintaining an erection (by far the most common problem)
-- reduced sensation in the penis
-- difficulty achieving orgasm and/or ejaculation
-- loss of libido
Other MS symptoms cause problems in both sexes:
-- fatigue and weakness can interfere with sexual interest and/or activity.
-- spasticity can cause cramping or uncontrollable spasms in the legs, causing them to pull together or making them difficult to separate-- either of which can make positioning difficult or uncomfortable.
-- pain can interfere with pleasure.
-- embarrassment can be caused by bowel or bladder incontinence.
This should about cover the sexual problems we could have along the way, but I still try to have a positive attitude. I'd rather smile and giggle than be upset since being sad won't help anyway.
Sensitivity to heat. Heat sensitivity seems to be a very common problem with those of us with MS. Personally, I cannot live without central air conditioning at home, an air conditioned vehicle and generally keeping cool year long. My normal body temperature runs between 95 and no higher than 97.7, so it's extremely important to keep it below 98 as even the "average" 98.6 is very high for me.
What I have found works to keep my body cool when I am in a situation where it's unbearably hot for me is to put a cool washcloth on the back of my neck, soak my feet in a bucket of cold ice water (it hurts at first but soon after, it's wonderful!), or even put a few ice cubes down my shirt. Back when I used to go outside on a more regular basis, I would even put ice cubes in a baggie, put it on my head and cover it with a bandanna. I freely admit it was NOT the most attractive look, but it sure kept my body cool!
Here is a brief summary of what the National MS Society has on their page:
"Many with MS experience a temporary worsening of symptoms with the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses. It's important to remember that heat generally produces only temporary worsening of symptoms and does not cause more disease activity. They symptoms are generally rapidly reversed when the source of increased temperature is removed.
Strategies for easing the effects of heat:
-- stay in an air conditioned environment during periods of extreme heat and humidity (if an air conditioner is needed to help minimize the symptoms of MS, the cost of this equipment may be tax deductible if the physician has written a prescription for it).
-- use cooling products (vests, neck wraps, bandannas, etc.) during exercise or outdoor activity, or pre- and post- cool.
-- wear lightweight, loose, "breathe-able" clothing.
-- icy drinks such as "Slurpees" or popsicles can provide temporary relief.
-- use an oscillating fan during indoor exercise.
-- exercise in a cool pool (less than 85 degrees).
Or you can contact the MS Society at 1-800-344-4867 for a list of approved cooling product vendors.
Some people with MS notice that symptoms, particularly spasticity, become worse in cold weather.
I have to say that as someone who lives in the Midwest, USA, where it gets deathly hot and humid in the summer and unbelievable cold in the winter, I am terribly affected by the weather all year! The cold never bothered me until maybe five years ago but now it causes me tremendous pain in my entire body. Basically, I live for those two glorious weeks of spring when the weather and barometer are just right, and once again in the fall when everything is phenomenal. The rest of the year? Ugh. I stay indoors!
I have one more point to get to on the list but ironically, this list didn't mention a few that I feel it should have. I'll do my best to address as many as I can this week! For now, I'm finished as it is already quite late.
I'm not feeling too great today so I won't continue the MS symptom list tonight. I'll try to get to it tomorrow and probably add a few more symptoms to it, as there are far more than the list mentions.
My vertigo has been doing quite a number on me from the moment I woke up and my body has been feeling.. just "off" all day long. Hell, I suppose I was feeling this way since last night as I couldn't even relax enough to go to bed until almost 6am and woke up around noon but still wasn't able to peel myself up until nearly 4pm. Let it suffice to say that it hasn't been my best day. Even after taking my daily meds, nothing has felt right to me. My head feels as if it is filled with rocks and even the slightest movement makes me terribly dizzy. Ugh. I hate when I feel this way!
I know my girls feel I'm not well as they have been all over me the last few days. I can't sit at my computer chair for even a few minutes without at least one of them coming up to me, meowing uncontrollably, nudging me, and then leaping onto my lap. I love them so much and need their loving gestures but sometimes, I just want to be left alone, but how can I tell them this? I feel as if I'm neglecting them when I don't hug them, kiss them or at least rub them under their chins until they purr, purr, purr. Ohh, and I do love doing this! But right now, I have no energy for any of it.
One of my best friends ever, Mike, stopped by Friday and completely surprised me. I hadn't seen him since January when I had gone to his auto brake and repair shop but since I haven't been able to drive since mid-March, I haven't been able to pop in and hang out as was my monthly routine. Since gasoline prices are much more economical in the state of Iowa (around 30¢ per gallon less than in Illinois), I would use this as an excuse to go see him, even though I didn't really need an excuse! Lucky me, the Shell station about a block or so from his shop is one of the least expensive ones I've found, so it was always more than worth my while to hang out with my good friend. To be honest, I was beginning to wonder if my being rather unwell lately had affected Mike's not coming to see me in recent months, even though he had told me many times over the phone that he had been terribly busy lately. So imagine my surprise to be awoken by his knocking on my door around 10am Friday morning, when I don't even get up until around 11am! But what a lovely way to wake up. It was great to see him again, talk for about an hour or so and catch up after such a long time. Mike promised to come back as soon as he had more time as he really didn't have too long to hang out that day, but he made me feel wonderful just by showing up. It really is the little things that mean so much.
I'm hoping for a better day tomorrow and to see Mike again soon. I hadn't realized how much I had missed his handsome face but damn, I did! I felt almost "normal" again when he was at my house and I suppose I hadn't realized how much I missed the feeling of normalcy. Looking at my calendar, next Sunday will be exactly three months since I have been able to drive my car on a regular basis (I'm not counting the day and a half I was able to drive last month as it seems it was only an "MS tease"). The funny thing is that I have yet to miss driving all that much. I guess it will hit me eventually but so far, so good. Feeling deprived of driving won't exactly change my current situation, so I do my best not to worry about it. Only time will tell what my future holds!
I have been eager to continue where I left off yesterday, so here goes!
Fatigue. I feel this is one of the most difficult for us to deal as it is debilitating, it's almost impossible to explain and others have trouble sympathizing or even trying to understand. What happens to me is this. I get up, go to the bathroom, make my way to the kitchen so I can give my three kitties fresh food and water, check my blood sugar, take my insulin, and many times this is enough to make me feel completely exhausted, so I collapse on the sofa. It's also the cause of many low blood sugar incidents, but when I'm feeling too fatigued to even get a cup of coffee, how am I supposed to think of eating? It makes me crazy, but it happens. To make it easier to understand, here is a list I found on www.about.com of some of the more common symptoms of MS fatigue.
While everyone experiences "being tired" occasionally, the fatigue associated with MS has certain characteristics:
1.- It occurs daily.
2.- It may be present in the morning, even after a good night's sleep.
3.- It worsens as the day progresses.
4.- Heat and humidity aggravate it.
5.- It comes on suddenly.
6.- It's more severe than normal fatigue and more likely to interfere with daily life.
For some people, there are additional related symptoms, including:
1.- Feeling of heaviness in the arms and legs.
2.- Worsening of other symptoms, such as problems with balance or vision, or slurring speech.
3.- Difficulty concentrating.
4.- Vertigo or dizziness.
5.- Headaches.
6.- Feeling ill, like you have the flu.
7.- Depression.
It is also worth noting that anywhere from 80% to 95% of those with MS experience this sort of fatigue and it is the MOST COMMON symptom. According to the MS Society's web page: "fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent in a person who otherwise has minimal activity limitations. Fatigue is one of the primary causes of early departure from the workforce."
As difficult as it may be to explain MS fatigue, rest assured that IT IS REAL and not only in your head. If you feel tired, don't fight yourself. Take a seat or lay down for a bit.
Bladder problems. Yeah, this is a fun one. Those with MS can be plagued with either over active bladder or not being able to empty the bladder.. or, if you're lucky like me, you get to have both simultaneously. Yay! Gotta love MS. (insert sarcastic eye roll) Luckily, I have a urologist to treat my bladder problems and we communicate very well and I am very pleased with my treatment plan.
According to the MS Society, bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully. Bladder dysfunction occurs when MS lesions block or delay transmissions of nerve signals in areas of the central nervous system that control the bladder and urinary sphincter. It is this muscle that gives people voluntary control over urination.
Symptoms of bladder dysfunction can include:
-- frequency and/or urgency of urination
-- hesitation in starting of urination
-- frequent nighttime urination (known as nocturia)
-- incontinence (the inability to hold in urine)
These symptoms can be caused by a "spastic" bladder that is unable to hold the normal amount of urine, or by a bladder that does not empty properly and retains some urine in it. Retaining urine can lead to complications such as repeated infections or kidney damage.
Left untreated, bladder dysfunction also could cause emotional and personal hygiene problems that can interfere with normal activities of living and socialization. It is therefore important to seek appropriate medical evaluation and treatment early, so that the cause of the bladder symptoms can be determined and treated, and complications avoided.
Bowel problems. Another fun one we have to deal with! Believe it or not, I didn't find any information online which I found adequate or even correct for this subject, which is really very disappointing to say the least. The MS Society claims that "constipation is a particular concern among people living with MS, as is loss of control of the bowels. Diarrhea and other problems of the stomach and bowels also can occur. Causes of constipation include insufficient fluid intake, reduced physical activity and mobility, and decreased or slowed "motility" (movement of food through the intestinal tract). Certain medications, such as antidepressants or drugs used to control bladder symptoms, might also cause constipation. Loss of bowel control in MS could be neurologic in origin or related to constipation, and it should be evaluated by a physician or nurse."
OK, what do I think? I think I try to drink as much water as possible but still can't "go" because my brain can't remember how to do it! I learned that it is perfectly alright to take Colace (it is NOT a laxative nor it is a stimulant) on a daily basis as my body has no "push," as one of my previous neurologists explained it to me. A laxative makes things too soft but taking Colace honestly keeps everything more natural and I am as close to "regular" as I've been in years.
And I will continue with the list tomorrow!
