One of the first things is that a chronic illness does not conform to most people’s prior experience with illness. MS does not go away. Nothing is the same and you can’t tell how different it is going to be from one day to the next. This unpredictability makes it difficult to make plans and decisions.

MS changes us. It causes us to rethink our plans, goals, dreams and aspirations: some changes may be relatively small but some are very significant, and affect several areas of our life.

Let’s take an apparently simple thing like socialising

MS can complicate socialising. The practical difficulties of getting out and about can affect friendships. The different lifestyle led by a person with MS may mean that some friendships are lost or changed, and there may be fewer opportunities to make new friends.

“You feel like being around people but find it hard. I can tolerate a couple of people but if I go into a room of 30 to 40 people I just feel like I need to get out of there and go home.”

We all have a sense of self, of “who we are”. It can refer to how we perceive ourselves, the kind of work we do, the activities we are involved in, the friends we have, and our place in a family that we care about. MS can play with this perception.

MS is not going to kill you but it is important to go through the grieving process of dealing with loss of the life you once had. Take control of the uncontrollable. Now this sounds la bit like holding the w aves back from the shore but  there is a lot you can do to live moiré comfortabley with this unpredictable disease.

• Educate yourself :The more you know the better prepared you are
• Create your support networks : you don’t have to do it alone
• Start your treatment early: There is no cure but several medications have been shown to slow the disease progression.
• Learn your own cues: For example does heat make your symptoms worse? Can you concentrate better earlier in the day? Are you sensitive to cold? When is your energy ay it’s best? Does it take you longer to do things than it used to? Share all these facts with those around you as nobody is a mind reader
• Always have a back-up plan: Every big plan should have a backup. One day you’re raring to go and the next you’re weighed down. Get into the habit  of thinking of alternatives just in case fatigue kicks in, symptoms flare up or a relapse happens.
• Tap that ang3er and frustration: Just reorganising your kitchen to make it easier for yourself  or do something big like advocate for the rights of peoples with disabilities  or add a comment to this psot and share with the others who come here, It all makes a difference

Summing Up

After being diagnosed, and as you manage your MS, it may be that your emotions and confidence are all over the place. It is very important to have good support networks to help you adjust, and to help you create new plans, goals and aspiration that are compatible with having MS.

The best piece of advice is don’t go it alone. Talking to others is crucial. It is important to have someone with a ready ear and an understanding of what you are going through.

Likewise, it is important that people with MS keep communication open between themselves, and others affected by their condition. This includes family, friends, medical professionals and caregivers. Effective solutions often depend upon a united approach to resolving the problem.

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In the last of the series I will be addressing tertiary causes of sexual dysfunction.

Whether a person is in an intimate relationship or not, it is a challenge to maintain a sexual identity and take care of one’s sexual self-esteem (how one feels about oneself as a sexual being) while dealing with a chronic illness such as MS.

Sexual changes in MS can best be characterised as primary, secondary, or tertiary.

Primary sexual dysfunction has been dealt with in parts 2 and 3.  Secondary was dealt with in part 4. In this article I am going to deal with tertiary sexual dysfunction but I am simply going to lay out the symptoms. A more advanced course is available which covers possible courses of action to take given the symptom.

Tertiary sexual dysfunction
The onset of MS can alter a person’s perception of himself or herself as an individual, altering sexual development and expressions of sexuality and it can have a negative impact on sexual and intimate functioning. These are known as the tertiary sexual problems of
MS, derived from the resultant psychological and social changes, as distinct from the direct neurological dysfunction (primary sexual problems) and the symptoms of MS (secondary sexual problems).

People with MS can find it difficult to see themselves as being “sexual”, having sexual thoughts, desires and needs whilst at the same time identifying with the role of a person with a chronic illness.

Individuals see themselves as complete persons in terms of their roles within families, friendship circles, sporting clubs, activities and occupations. Any feelings of loss of control over events or unplanned changes because of MS can affect one’s confidence and self-esteem and alter the dynamics of relationships, especially close and intimate ones.

Dealing with the impact of MS and symptoms can leave one neglecting the emotional and psychological aspects of life in general. Simply attending to the physical needs of life’s daily activities can leave little time or energy for emotional contemplation and intimate relationships. This is particularly evident if fatigue is experienced as a symptom of the MS.

What you can do

If you experience problems with intimacy and sexuality, you need to allow yourself time to assess your overall situation and to feel confident about communicating any difficulties to those close to you.

Counselling can help individuals to explore feelings and facilitate discussion in a respectful and professional way. You can identify negative emotions such as guilt, anger and resentment, see them in context, and work through them, in a non-judgemental environment.
Here you can discuss topics, perhaps seen as too embarrassing to discuss alone, in an open and supportive atmosphere. Strategies for improving the situation, or adopting new ways of considering and developing sexuality, can be introduced.

Drugs that affect sexual functioning

Some people with MS may experience depression and/or anxiety, and medications prescribed for these conditions can affect sexual functioning.

The drugs used to treat depression and anxiety belong to a family called ‘Selective Serotonin Reuptake Inhibitors’ (SSRIs). Commonly prescribed SSRIs include Fluoxetine, Sertraline, Fluvoxamine, Paroxetine, Citalopram and Venlafaxine.

Conclusion

Sexuality is an important aspect of human life and must not be neglected when considering the impact of MS on an individual.

Increasing awareness and acknowledgement of the effects of MS on sexuality has greatly improved the management and treatment options available for people with MS experiencing difficulties in this area.

While this is often a difficult and sensitive subject, discussing sexual difficulties with your GP or neurologist is the first step to identifying effective strategies to manage any problems, and to support your need for sexual expression.

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• Sexuality and intimacy in MS – part 4 Secondary (0)
• Sexuality and Intimacy in MS – part 2 Female sexual dysfunction (0)
• Sexuality and intimacy in MS – part 3 Male sexual dysfunction (0)
• Promising psychosocial treatments for pain in MS (4)
• Pain in multiple sclerosis part 2 – Neurogenic pain (4)
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Jon L. Wegner

Although I didn’t cry tears were welling up in my eyes and my throat was getting choked up. I didn’t want my son to see me like this so I quickly finished the book and we went on to Cat In The Hat. I don’t know what it was but my emotions were suddenly out of whack. To think that a great ballplayer who was also a nice man succumbed to ALS just didn’t seem fair. But I realize there are alot of unfair things in this world and life goes on. But as I’ve said before my emotions nowadays seem more out of whack and things bother me more. Abuse of women and children top that list. I also don’t like to hear about friends who get severe illness like cancer, diabetes, strokes, etc.

Part of the information that you see below came from the website www.themcfox.com I found this to be a excellent resource for information on multiple sclerosis. Emotional problems and difficulties with multiple sclerosis are extremely common. This is unsurprising considering the impact having multiple sclerosis can have in your life. Emotional problems may develop due to the disease itself and can also develop simply as a result of becoming overwhelmed by the implications of having multiple sclerosis and the outlook for the future.

Regardless of what age you are when multiple sclerosis is diagnosed (average age of diagnosis is around 37 years of age), the emotional blows inflicted are quite considerable. People usually find they become frightened (even if they don’t admit it) by the prospect of multiple sclerosis. In part, this is due to a lack of knowledge on the subject and the stereotypical picture many people already have.

Another huge emotional blow is the impact that the developing disease may have on life plans and direction. The ability to work may be affected throwing future plans into disarray. This often becomes an ever increasing reality as the disease progresses over time although it may take many years before a person’s ability to work is affected to the point of having to give up employment.

Other sources of emotional distress may result from the changes it is necessary to make to family life such as switching roles within the family unit. An example would be from wage earner to house person. Uncontrollable emotional outbursts are usually the result of the disease process.

Suddenly laughing for no apparent reason (even to yourself) or suddenly bursting into tears are usually the result of disease activity. They tend to occur with lesion formation in the areas of the brain which are involved with emotion. This type of emotional difficulty is known as emotional lability (severe mood swings) or the pseudobulbar affect (uncontrollable laughing/crying).

I guess my recent difficulty in reading to my son is to be expected. I spoke with a friend who has terminal cancer last week. He said he has crying jags and depression when he thinks of his life and where he’s now probably going. To sum all this up MS and other diseases can most definately have a profound impact on your emotions.

I can’t elet this stuff on left !!

Jon Wegner is a 50 year old resident of a small town close to Fargo, ND, USA. He’s lived there for four years after being lifelong Minnesotan. Jon’s had multiple sclerosis for over 20 years and in 2007 his MS took the majority of his walking. He now rides his three wheel electric scooter 95% of the time to get around. He can be seen scooting all over his little town daily. Jon’s website, e-book, FREE newsletter and articles can be found at http://www.mymsbookandnewsletter.com Sign up for his monthly newsletter there. Jon’s top affiliate is at http://www.scooterjon3958.com

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When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket – preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?

- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

-Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there til tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’ s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms

Welcome to our world.

Then Finally…

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.

Cheree’s Added Note: This may sound harsh or exaggerated, but trust me when I say that it’s all true. MS is most times considered the ‘invisible’ disease because alot of us with MS can walk around looking like we’re ok! What you don’t see are the rough times spent at home, alone, at night, when MS causes us the most pain. The next time you see someone with a chronic illness and see them smiling, just remember that they’re probably dealing with a whole lot more than the eye can see…and let them know that you care!

Related posts

• Sexuality and intimacy in MS – part 4 Secondary (0)
• Promising psychosocial treatments for pain in MS (4)
• Pain in multiple sclerosis part 2 – Neurogenic pain (4)
• Why Do I Feel So tired? (0)
• The Next Challenge to Understanding Multiple Sclerosis (0)
• The Challenge of Working with MS (5)
• Sexuality and intimacy in MS – part 5 Tertiary (0)