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If you have just been diagnosed with multiple sclerosis, or think this is a possibility, I'm sorry to hear it.
You may feel your world has come to an end with the diagnosis. It hasn't. You will wake up tomorrow and you will carry on. Your life may be a bit different now than before diagnosis but sometimes this is not a bad thing.
The reason I say this is because I am relatively confident the pace of your life and the stress levels you were under prior to the multiple sclerosis diagnosis were to such a degree that even you, deep down, knew 'something had to give'.
In part this was due to the effect multiple sclerosis (ms) was already having on your body before you even became aware of any real problem, let alone before the multiple sclerosis diagnosis became a possibility.
Beginners Guide to Multiple Sclerosis (MS)
The aim of this 'Beginners Guide' is to introduce you to multiple sclerosis and give you an understanding without any flowery or overly-complicated language.
Multiple Sclerosis (MS) affects many, many, aspects of you, as a person. Some things you will know about already and some things will be new to you.
Mental, Emotional and Physical Problems
You may already have noticed from the links at the top of this page that a large section of this 'Beginners Guide to Multiple Sclerosis' is devoted to the introduction of the aspects of multiple sclerosis which are often hidden away because they pertain to 'things of the mind'.
Mental and emotional issues arising from multiple sclerosis are no less important than physical symptoms, indeed they may actually have more impact in your life. How you deal with any mental or emotional difficulties can make the difference between having an exacerbation and avoiding one (see stress), so lets keep things where they belong; out in the open!
Multiple Sclerosis: Brain Fog
"It seemed like the harder I tried to think, the worse it got. As if my mind was surrounded by a thick mist that wouldn't lift."
This may seem an odd way to begin this Guide: Brain fog? "What?" "Huh?"
"What about the serious stuff for goodness sake? My mind is fine, so get on with it!"
"I can't see properly! What about that?"
"I'm so exhausted, I can hardly move!"
"I keep tripping over my own feet; well, foot!"
"My legs feel like they are on fire!"
"I keep dropping things!" ...
This could easily be a very long list so I'll shut up and get to the point. You get the idea, I'm sure. This Beginners Guide is about introducing you to multiple sclerosis, in all its colors.
What is brain fog?
I'm glad you asked!
Brain fog is the name given by the MS Community at large; to a common complaint by people who have multiple sclerosis, that they cannot think clearly. It may even be why you went to your doctor.
More than likely however, is that brain fog has crept up on you slowly over the years. You are probably aware of 'something'; you just don't know what, making it difficult to think clearly. Some people describe it as 'like having cotton wool in your head'.
Over time, the 'cotton wool' feeling that prevents you from thinking clearly, gets worse and you must exert increasing amounts of energy to fight through the 'brain fog' barrier to accomplish, well, just about everything.
Before diagnosis, or a 'possible' multiple sclerosis diagnosis; 'brain fog' was just 'how it was' and was probably something you were never quite fully consciously aware of. You may even have thought everyone else is the same.
They're not.
Brain fog is generally lumped into the term, 'cognitive difficulties' or 'cognitive dysfunction'.
Cognitive dysfunction actually covers a whole range of different things, one of which is 'brain fog'.
Multiple Sclerosis: Memory problems
Memory Problems and Multiple Sclerosis
"Yes, y'know!!? Those little brown things that fly."
"Sparrows?"
"Yes! That's it. Sparrows!"
Memory problems are another difficulty faced by people with multiple sclerosis (ms). Not everyone is affected but the majority of people who have ms do have some problems with their memory although this may be slight and have little impact.
When memory problems become a factor, there are a few things you can do to help yourself:
Write things down
Leave yourself notes
Keep lists
As with so many things in this complicated disease, the memory problems associated with multiple sclerosis tend to be thrown together under the term, 'cognitive difficulties' or 'cognitive dysfunction'.
Multiple Sclerosis: Cognitive Dysfunction
What Is Cognitive Dysfunction?
"I looked at the sheet of paper in front of me. I had been doing the same calculations for years and suddenly, nothing on the paper made any sense to me. My mind was a blank."
There is no single description which fully encompasses the term, 'cognitive dysfunction'. It really applies to a whole raft of different problems and issues associated with and related to; intellectual functioning.
What is Cognition?
As a general description, you can think of cognition as applying to memory and thinking. More specifically, cognition describes the way our brains:
Think, reason and solve problems
Focus, maintain and divide attention (concentrate)
Learn and remember new things
Plan, carry out, and regulate our own activities
Recognize things, assemble or group things together, and judge distances
Understand and use language
Cognitive Difficulties
Time to introduce some of the difficulties, other than brain fog and memory problems, which can occur with multiple sclerosis:
Verbal fluency and language skills can be impaired
Intellectual reasoning can be impaired
Inability to learn quickly
Poor problem solving abilities
Information processing can be slowed
Poor concentration
Sounds like a bad report card, huh?
Most of the cognitive problems listed tend to happen at different times and usually not all at once, and, the good news is that the majority of people who experience cognitive problems will only have relatively minor difficulties requiring (mostly) minor adjustments.
Multiple Sclerosis: Emotional Issues
Multiple Sclerosis and the Emotions
"I was prepared for the worst but when the words came out of the doctor's mouth, I was devastated."
Multiple sclerosis (ms) plays havoc with your emotions. Not only do you have to deal with the rollercoaster of fear, denial, grief and anger you may feel about being diagnosed with a disease which is unpredictable and may lead to disability; but multiple sclerosis itself, has some profound influences on emotional well being.
Let me explain.
"Bad News: You Have MS"
When you are diagnosed, or even get to the point where multiple sclerosis is a possibility given the type of symptoms you have been experiencing over the years; you have to come to terms with it.
So how do you handle such devastating news? That you have an illness which can lead to disability? You will probably feel anger at some level. Fear too, since the future you thought you had is no longer clear. You may not really feel anything. You might lash out at everything and everyone around you.
You may feel; frustrated, sad, lonely, anxious, afraid, unhappy, angry, hostile, belligerent, bewildered, lost, depressed, scared, confused ... (No doubt you can add to this non-exhaustive list)
Just coming to terms with the myriad of emotions which a diagnosis of multiple sclerosis brings, is a process. One which occurs over a period of time as you come to adjust.
Bad News, and then some ...
So you have been given your bad news, and you are doing your best to deal with the diagnosis ... and you think you are doing quite well. And you are ...
So why do you keep crying all the time? Why do you feel so down? And, pssst, don't tell anyone, but why do you keep bursting out laughing for no apparent reason, or at really inappropriate times? What the f***? Oh yeah, and why am I swearing so much?
This is because the damage being caused as lesions form has measurable emotional effects if they occur in any part of the brain which deals with emotions.
What this means, is that you have to deal with a highly emotional situation (i.e. the diagnosis) and you must do so with additional emotional problems which are caused directly by the disease.
This can take some effort, not only on your part, but on the part of those around you, so do not leave them in the dark about the situation. Talk to your family, especially a partner. They need to know.
Multiple Sclerosis: Emotional Problems
Multiple Sclerosis and Emotional Problems
"I can go from happy to sad to angry in the space of a few seconds."
Multiple sclerosis (ms) can itself cause a range of different emotional problems. It is important to be aware of them.
Uncontrollable, or inappropriate, laughing or crying (pseudobulbar affect)
Inappropriate behaviour
Some people may experience little by way of emotional disturbance while others may have severe emotional and mental disturbances.
There is such considerable overlap between emotional, cognitive and mental problems and disturbances, that it can be difficult to distinguish between them, particularly if you are currently in the throes of one, or all, of them.
If you suffer from, or experience, emotional, cognitive or mental problems, it is important you seek some help.
If you are unable to bring yourself to admit to your doctor or family that you are having difficulties, do understand you are not alone in your situation. There are many like you who have felt the same way. If you can, communicate with others who have multiple sclerosis. It may help you to come to terms with your present situation.
Multiple Sclerosis: Stress
Multiple Sclerosis and Stress
"Stress seemed to keep me going so I always made sure I had something simmering away in the background keeping me on my toes. It would work for a while but it would always end up wearing me down before I could accomplish anything."
Stress and multiple sclerosis seem at times to go hand in hand. Studies have shown that stressful life events can trigger exacerbations in relapsing-remitting multiple sclerosis (rrms). Some additional studies appear to indicate a high correlation between stress and the development of multiple sclerosis.
This means that it is important to recognize the role that stress can play in your life.
Clearly, it is impossible to avoid stress completely; however, it is not impossible to limit your exposure to stress and equally as important, to modify your responses to stressful situations.
Limiting your exposure to stress
To try to crystallize how you can limit your exposure to stress, ask yourself the following questions:
"Am I a perfectionist?"
"Do I set unattainable goals for myself?"
"Do I push myself beyond my limits?"
Sound familiar? If you answered 'yes' to any of the above, then you are adding unnecessary stress to your life. Stress which can easily be avoided.
You must make the choice. Only you know when you are increasing your stress levels unnecessarily and only you can make the choice not to do so.
Dusting and polishing can wait. So can vacuuming the carpet, getting to the shops, finishing the decorating in a day, or any of the thousand other things I'm sure you can think of, that if you take a mental step backwards from the situation, you realize can wait.
Stress Management
Many people find that performing yoga helps them to be better able to manage stress. Some studies have found that people who use yoga as a means of relaxation, have less cognitive dysfunction than those who do nothing to manage stress.
Whether you choose yoga, or some other means of relaxation, such as listening to your favorite music, gentle exercises, or some other hobby, what is most important regarding stress management, is that you make some time for yourself.
Not yourself getting the ironing finished. Not yourself finishing the decorating. Making time for yourself is just that. Even if it is only 20 minutes out of every day, a little relaxation time reserved exclusively for you will help prevent stress building up and causing problems.
Getting out of the trench
"Huh? What trench?" I hear you ask.
'Getting out of the trench' refers to all of the habits you have developed over the years which have ensured you have difficulty letting go of stress. Those little things you do to keep your stress levels up.
There was a time when keeping your stress levels up was advantageous to you because it helped you to get the job done or gave you the drive to push through the weariness. Sometimes the only way to get things done was to ensure that your stress levels were high.
As a coping mechanism, you have learned to artificially enhance your levels of stress.
This was in the past. Habits you have unconsciously developed over the years to counteract fatigue or brain fog; or both.
These little habits and techniques, which you have so carefully, if unknowingly, developed throughout your life, run very deep. Your position is entrenched in old habits.
Which is why you must make a conscious effort to keep clear of entrenched old habits. That way, you avoid pushing yourself to break-point instead of waiting until you have already reached it.
Multiple Sclerosis: Spendomania!
"I was like a creature possessed! Buying clothes was now a wonderful thing to do and I bought clothes. Boy, did I buy clothes! Thing is, I've always hated shopping for clothes. I still do!"
This is something you probably won't read about on other sites about multiple sclerosis but it is something you really should know can happen, whether you are new to multiple sclerosis, or thought you had pretty much learned all there was to know about the condition.
What is Spendomania?
Spendomania is the reckless spending of money, usually on items you do not need and often, do not even want! The downside is of course, financial hardship and the possibility of running up huge credit card bills or falling into debt you cannot pay.
How do you know if you are suffering from Spendomania?
Most likely, you will feel like you want to shop like a creature possessed and end up buying a load of things you don't really need or for that matter, want, often leaving unopened packages, new shoes or new clothing unworn.
Whilst it is great fun shopping without the constraints that once held you to relative prudence, this can land you in some serious debt, so before you buy, always ask yourself if you really want or need the item.
If your answer is "Who cares?" or something similar, you might want to reconsider your spending, particularly if you tend to leave things unopened or, perhaps much more importantly, if you are falling into debt.
Debt burden and MS
Multiple Sclerosis and debt can be a brutal combination. Adding to the burden of struggling to manage to work (if you are still able) and pay unnecessary bills run up by spending money you do not have is something you can definitely do without.
Multiple sclerosis is a particularly nasty illness in one particular respect in that it often strikes in the prime of adulthood, just when earning power and overall stamina needs to be at their peak.
The twin blows of losing earnings through job loss, or work absence, and physically being unable to work can place tremendous strain on anyone. Try not to add to your problems.
When / How does Spendomania Strike?
When spendomania strikes, it is often subtle, at least to begin with. A little 'treat' here and there can soon escalate into a spending frenzy which will max-out credit cards, drain bank funds and lead to a debt spiral.
Perhaps most worryingly, a 'spendomaniac' usually feels completely normal, indeed they can often feel almost euphoric and therefore recognizing that there is a problem in the first place can be difficult.
Going through this type of phase can occur after a period where other symptoms such as dizziness/vertigo have been severe. As the exacerbation recedes slightly and loses its grip, a temporary euphoria can set in where the person feels wonderful mentally and may even feel better physically but underneath the surface, an exacerbation may still be occurring.
This is the danger time! The time when it is easy to run up debts which will leave you in financial hardship for years to come. Recognizing that there is a problem, or a potential problem, is the first step.
How to avoid becoming a Spendomaniac
Be aware it can happen ... even to you!
Keep an eye on your spending: for example, are you buying things you do not need or being overly extravagant? Is the thrill of shopping the attraction rather than the requirement to shop? Do you find you are piling up debts which you could avoid and can do without?
If you are, or find yourself becoming aware of the some of the things mentioned in this article, then please, revise your spending habits at once.
If necessary, and it sometimes has to be done, believe me, pass control of finances to your partner or someone you can trust implicitly. You do not need to relinquish all control, just have someone who will be able to help you put a brake on your spending habits until the worst is over.
Spendomania may occur more than once. It can occur many times but if you are aware it can happen, and can take some steps to take to regain control, you should be able to avoid unnecessary financial hardship.
Multiple Sclerosis: Speech
Multiple Sclerosis and Speech Problems
"I kept slurring my words. My boss didn't say anything at the time but it was obvious she thought I was on something."
Speech problems can be profoundly far reaching in their impact, and profoundly puzzling if you have no idea what is going on.
Not everyone has problems with their speech but for those who do, the difficulties they cause can be quite frustrating, to say the least.
What are the Speech Problems with MS?
Speech disorders are not that uncommon in multiple sclerosis. In medical language, speech disorders are know as dysarthrias.
Speech difficulties arising from multiple sclerosis may be temporary (transient) or much more rarely, they may be permanent.
The severity of any speech problem can fall anywhere between very mild and barely noticeable, to a severe speech disturbance which makes it very difficult to form words properly and to be understood.
Speech problems can show themselves in the following ways:
Slurring of words
Mispronunciation of words
Monotonous tone of voice
Failure to complete words
As with many of the symptoms which can occur with multiple sclerosis, speech problems can come and go, sometimes within the space of a few hours.
Multiple Sclerosis: Language Problems
Language Problems and Multiple Sclerosis
"I tried to tell him I didn't like doctor's appointments because they made me nervous, just like a dental appointment. Somehow, the words that came out were that I hated doctors. Needless to say, things went downhill from there!"
Language is another area which multiple sclerosis can affect. Unseen, this particular aspect can be quite insidious in how it affects everyday interactions with other people, often making effective communication difficult.
More severe forms of language dysfunction can occur where verbal expression is badly hampered. Typically, the words are there, somewhere; it is remembering them that is the problem and this can break the fluency of conversation, leading to a reluctance to participate and a sense of isolation.
Other ways language problems can manifest themselves is when you try to say one thing, but something entirely different comes out. Somewhere between thinking it, and the words actually coming out of your mouth, they (the words) have been substituted.
If you are fortunate, the substituted words will approximate to what it was you were trying to say. If you are not so lucky, your substituted words will convey an entirely different meaning than the one you intended. They may not even be relevant at all and you may respond with something entirely inappropriate to the conversation.
Language Problems: A Temporary Event
It is important to realize then, that the areas of the brain which deals with spoken language can be affected.
Usually, this is very much a temporary event even if it does last for several weeks or months, and although it may be distressing, interrupt normal socializing and leading to self-imposed 'isolation' in some instances, it will pass.
If you are affected by language difficulties, try to stay within reach of a normal social life even if you do not feel like it. You may need to modify how you interact with others if you are uncomfortable with how you feel but you will return to normal over time and regain your confidence.
