It’s not so long ago that a diagnosis of MS led your doctor to tell you to quit work and go home and rest. Many people did this, but they got bored.

MS affects people in different ways. Some have a relatively mild form of MS and may never experience any symptoms which prevent them from working. Others may have to cope with varying degrees of disability from time to time, whilst some people may become severely disabled quickly. It is only a small proportion of people with MS who are so severely affected.

However, there are many reasons why people leave the workforce ranging from problems with fatigue and cognitive dysfunction to embarrassing problems such as bowel and bladder difficulties. But many people are not aware of the treatments available and the accommodations that can be made to allow them to stay “on the job”.

While well meaning friends, family and healthcare workers could be encouraging you to reduce stress and give up work, there is only a tentative link between MS and stress and the stresses of unemployment with its financial burdens are not a good solution.

So let’s start with working outside the home.

There are many benefits for an employer who supports the employee with any kind of disability

• Maximising on their investments in an employee with MS, for example by not losing prematurely the skills and experience of a well trained member of the workforce
• Avoiding potential difficulties by adopting a proactive approach to intermittent medical condition policy issues now, instead of waiting for a situation to arise
• Confirming that existing/new policies and procedures comply with current or upcoming legislation
• Capitalising on the expertise and support provided by the MS Societies
• Promoting a positive perception/image of the organisation to both employees and external audiences.

For the employee there are reasons to keep going.

• Financial security: The longer you remain in the workforce the higher you benefits are likely be if you need to leave and the longer you can pay into savings.
• Fringe benefits such as health insurance may be one of  your most valuable assets.
• Your identity is often defined , at least in part, by the kind of work you do.
• A sense of self worth comes from  feeling productive and contributing to your family, your community and even society as a whole. Thus voluntary work can have just the same benefit.
• Being a role model for others feels good. A model for your kids, others with disabilities and even anyone else who’s paying attention.

If you want to stay in the home there are options you can look into.

There may be many reasons why people struggle to secure employment outside of the home, and disability and ongoing illness may be one cause. Problems overcoming physical limitations, in the workplace, or employer reluctance to hire you and give you the chance to try may arise despite laws that forbid discriminating against disabled applicants. Ongoing or frequent illness may mean that you miss a lot of work, or are unable to keep up with the required working pace. Working in the comfort of your own home ensures that all areas are accessible and safe, and any specialist devices that you may need such as computer screen readers for the blind are available to you.

Some home working may involve being employed as an at home agent of a larger company, whilst others may involve you being self employed; your own boss, answerable to no one but yourself. You may have to try several different things before you find something that is suitably flexible to work for you, or that meets your other needs and your likes.

The internet is a great, big equalizer and it can work to your advantage. The internet does not care if you are disabled – it only requires that you can deliver the work you promise.

Self employment can start very easily and if you are using social networks like Twitter and Facebook you will have a readymade audience to work with. Be careful not to sign up with some of the called “gurus” who claim you can make huge amounts of money in very little time. There is no such thing as a free lunch but by working consistently you can achieve your goals.

Look into things like MY AUTO CASH GENERATOR by Joey Smith and Devon Brown or investigate scriptlance.com or elance.com article writers, web designers, software programmers, audio transcriptionist, proofreaders, video creators, et cetera are all used by these companies. Or check out a directory site like wahcheck.com . Start advertising yourself with a free advertiusing service. There is no end of wasy to keep the costs down.

There is no requirement to stick to only one option you can do as many as you like but don’t dilute your focus by trying to do too many.

Related posts

• Sexuality and intimacy in MS – part 4 Secondary (0)
• Disability 101: Changed and on my way to D.C. by Rosalind Joffe (0)
• Sexuality and intimacy in MS – part 5 Tertiary (0)
• Protecting Your Job While Coping With a Chronic Illness (3)
• Promising psychosocial treatments for pain in MS (4)
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In  the fourth part of this series I will be addressing secondary causes of sexual dysfunction.

While life changes affect everyone, changes from MS can directly and indirectly affect sexuality.

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. In this article I am going to deal with secondary 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.

Secondary sexual dysfunction

MS changes can affect sexual response by making sexual activity difficult physically and emotionally. Symptoms common to MS, such as fatigue or changes in muscle tone, lack of coordination or pain, can frustrate sexual expression and extinguish desire. Bowel and bladder dysfunction can inhibit and cause embarrassment. Cognitive changes challenge the most devoted couple, yet in the presence of any of these symptoms; it is possible to find creative ways to keep the physical expressions of love alive.

Fatigue

This is perhaps the most common symptom reported by people with

MS, and it can be the most disabling.

Weakness

Muscle weakness may necessitate alterations in sexual practices.

Lack of coordination and tremor

Lack of coordination may make sex and sexual expression feel clumsy, as can tremor. But besides being awkward, these symptoms may also interfere with the couple’s style of having sex.

Bowel and bladder problems

Another source of anxiety and distress can be bowel and bladder disturbances. These problems go hand in hand with sexual dysfunction, since nerve pathways are shared or close to each other. Incontinence, or even fear of having an accident, can cause a person to avoid sex entirely, thus depriving them of the closeness it brings.

Pain

This can impact significantly on interest in sex as well as performance ability. Understanding the type of pain can influence the best way to manage it. Muscle tightness, intense itching and spasticity may all be called “pain”. Also, medications used to relieve pain may add to sleepiness or fatigue.

What you can do

Medications that bring relief must be well prescribed for the type of pain they treat and used in just the right dose and frequency to give relief with the least disadvantageous side-effects. An extra or well-timed dose before intimacy can often provide effective symptom management and reassure the partner that he/she is not adding to discomfort.

It is also important that a symptom such as adductor spasms (which cause involuntary pulling together of the legs) is not seen as an indication of the person’s interest or willingness to have sex. Again, communication is the key to avoiding misunderstanding and hurt feelings.

Water soluble lubricants can make intercourse more comfortable, without predisposing to urinary tract infection.

Sensory issues

Changes in sensation can also interfere with sexual pleasure. Non-genital symptoms such as numbness and tingling can distract and discourage either partner. Impaired genital sensations can diminish pleasure, while heightened sensitivity may make even the lightest touch unbearable. What feels good at one time may be excruciatingly painful on another occasion

Mobility

Mobility devices used to compensate for loss of function can also damage your confidence and self-image. They may be seen as less than sexy. Canes, wheelchairs, braces and walkers are often identified with being “sick” or “old”. Spontaneity can be a problem if great effort has to be made to get about.

Cognition

Cognitive changes can be amongst the most potentially damaging to the relationship, since they can undermine the person’s sense of who he/she is. A partner may feel this is no longer the person they once knew. Changes in attention and concentration may be perceived as lack of interest or love, and may irreparably strain the relationship. Changes in mood, memory loss and depression can be frightening, frustrating and sometimes infuriating. All interfere with intimacy. Individual or couples counselling may be advised.

Conclusion

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

Related posts

• Sexuality and intimacy in MS – part 5 Tertiary (0)
• The Challenge of Working with MS (5)
• Sexuality and intimacy in MS – part 3 Male sexual dysfunction (0)
• Sexuality and Intimacy in MS – part 2 Female sexual dysfunction (0)
• Living with MS (0)
• Promising psychosocial treatments for pain in MS (4)
• Pain in multiple sclerosis part 2 – Neurogenic pain (4)

My first introduction to a disability scooter was in the local mall where I was entitled to free use of one while using the mall. A bit scary, what if I meet people I know, what if I can’t drive it, how will it feel to be lower than everybody, what if I want to leave it outside a shop

Well I have to say this all disappeared into the ether when I took the step of taking my 10 and 8 year old boys with me the first time. They were THRILLED and even though I had to say it wasn’t for them to play on they delighted in my ability to shoot down the mall aisles faster than ever before( they liked to race me) and be able to carry their bags. Most of all I could get home after a shopping trip without being completely wiped out. They seemed unable to see any downside. I was suddenly a really cool mom. I imagine if they were teenagers it wouldn’t be the same.

Anyway this unexpected notoriety filled me with confidence and I stopped caring what people would think. I have since met a lot of people while using my “mall scooter” and at least one is someone who badly needs to use one but hasn’t got over the stigma of it all. My kids gave me this freedom with their unconditional positive regard and they were young enough to think nothing Mom does could be embarrassing. The oldest is now 13 and he STILL thinks it’s ok in fact prefers me to use one so I don’t get worn out.

If you’re choosing a scooter take your child with you and see it through their eyes!

Related posts

• The Challenge of Working with MS (5)
• Sexuality and intimacy in MS – part 4 Secondary (0)
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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)