"You look tired.” Or Fatigue Part 2

Fatigue is such a misunderstood symptom of that that I thought it deserved a second write-up. (See the first one here.) Unfortunately, it is understandably difficult for others to comprehend how fatigue affects you daily as a person with MS.

Fatigue is a common symptom in chronic illness and in many cases it is severe and often debilitating. It can be triggered by daily activities or by events that are more elaborate. Those of us with chronic illness will often have to “pay a price” for engaging in an activity and then require a period of recovery. Once fatigue kicks in, there is no other option than to rest. The body “hits a wall” and cannot go further, no matter what.

Exhaustion. It can overpower you even as you wake up in the morning. The thing is that after a while we begin to hide this exhaustion. We learn to smile through the pain, but faking it does not make it. This feeling haunts you. A lot of us pour an incredible amount of energy into living each day.

Fatigue management involves pacing yourself and using what energy you have for the most important things. It may involve asking others to help or just accepting that not everything will be done. 

It is not our fault that we have to leave the party early to make sure we don’t fall asleep at work (if we can still work!) the next day. It is not our fault that we are tired beyond imagination because in life there are some things we just cannot control. Sometimes MS just controls us.

Living With Fatigue –A publication by the MS Trust

Ableism

Nearly 1 in 5 people in the United States has a disability, yet many forms of discrimination against the disability community persist because they are not yet widely recognized.

Ableism refers to "discrimination in favor of able-bodied people" according to the Oxford English Dictionary. Inherent in ableism is the belief that people with disabilities cannot function as full members of society and that having a disability is a defect rather than a difference.

Examples of ableism are readily available in the built environment, where concerns about accessibility are often not foremost in the design process. Instead of fully accessible and welcoming spaces, accommodations are tacked on haphazardly, leading to hard-to-navigate spaces. With the passage of ADA, progress has been made but inclusive design is still the exception, not the norm.

Disability segregation—limiting the movement of disabled persons in public spaces—is commonplace and accepted. Many times, we have to use sketchy side or back entrances, dark and cluttered hallways, or poorly functioning and inaccessible elevators to enter and move about establishments. There’s often no signage so we have to announce our disability and needs. Disability comes with its own unique challenges and trials, but the inability to move freely through our communities, easily get to work, visit friends’ and relatives’ homes — and the social isolation that follows — is a violation of our rights and a detriment to our health.

Able-bodied individuals fail to recognize the privilege of having ready access to any space. Plenty of people may not directly discriminate against people with disabilities but if you use handicapped parking spaces or bathroom stalls you are effectively doing so by taking options away from people who lack alternatives.

Inclusion is the answer. It means that spaces, opportunities, and things are accessible, functional, and welcoming for the able-bodied as well as those with disabilities. An inclusive society removes the barriers and isolation that people with disabilities face every day.

9 Things That Might Not Seem Ableist But Actually Are

Interacting with People with Disabilities

It's no secret a lot of people in the world aren't comfortable around people with disabilities. It can take time getting comfortable with the idea of being disabled, and it can take even longer for people to get comfortable around us. Some people look at us with curiosity, pushing it as far as pointing fingers. Some offer to pray for us (why?) or avoid us, because who knows, maybe it’s contagious? Not many able-bodied people seem to treat their peers with disabilities as, well – “normal people.” Maybe it’s because they don’t know just how similar we actually are? 

Recently, I was on the BART (a Bay Area Rapid Transit train) and a woman said to me, “What happened to you? The wheelchair…” Seriously, lady?!? I’ve got a minute; why don’t you tell me your life story? I told her it was none of her business but thanked her for her concern. Earlier that day, I entered a shop but couldn’t fit through an aisle. The clerk told me to be careful. I turned to leave instead. You just lost a customer. She said she’d be happy to get anything I wanted to see. She should have led with that. I told her I was leaving. My husband told me that she looked panicked when I came in. Another time, a few years ago, I was in a bar and was still using my forearm crutches when a girl came up to me and told me she just knew I was going to be alright. Um, thanks?

People with disabilities as a whole don't like being referred to as "inspirational," especially when they do a basic task like go and buy some coffee. And this happens all the time. While some people get inspired by us simply living our lives and can't help it, please try to refrain from sharing your thoughts with us. We are just trying to live our lives like everyone else. Your comment will have the negative effect, reminding us how different people still think we are.

On the other hand, it is extremely common for people to talk to the person I am with rather than talking to me. “Hello… I’m down here!” Some may argue that this is due to people not knowing how to respond to someone in a wheelchair, or being worried they would say the wrong thing and offend me. I am completely capable of talking and communicating with you — just talk to me like you would talk to any other person.

Oh, and always ask before giving assistance. Just because a person has a disability, they don't necessarily need or want your assistance. Never help someone without first asking them. Also, avoid showing pity or being patronizing. People with disabilities aren't victims. 

When in doubt, always refer to the Golden Rule - treat others as you'd like to be treated. Mutual respect. At the end of the day, this is the only tip you need. Interacting with people with disabilities is only as hard as you make it.

Disability Etiquette from The United Spinal Association

At Home with MS

MS often brings the prospect of major lifestyle changes. It’s important to ensure that the home environment for those of us with disabilities provides the support we need to lead safe and happy lives. Typically, doing so involves making some type of home modification. When modifying your home, the goal is to achieve independence and safety.

When we bought our condo, the first thing we did was have grab bars installed in our bathrooms. We also bought a riser recliner to help me get up out of the chair. As I mentioned in my last post, we’ve made even more changes as my disability progresses. Making changes to your home is part of the game of adapting. Improving access and making modifications not only conserves energy and helps fight fatigue, it provides you with more independence.

Lighting is an important safety consideration. Hallways and stairwells often lack any windows allowing for natural light, so take special care to light them properly. 

The bathroom can be a dangerous place for anyone. Grab bars should be placed throughout the bathroom to provide you extra support. Getting up from the toilet and maintaining your balance in the tub or shower is easier when grab bars are present. This is smart even if your MS isn't severe because balance problems and weakness can unexpectedly occur. The toilet is another area that will require a personal assessment to determine your personal needs. If it’s too low for you to easily transfer to and from, an elevated seat is an easy fix. Some come with arms or guard rails for additional support. Your bathing area is especially important to get right since water will add extra risk. Shower stalls with curtains, roll-in accessibility, and a seat are the safest options even if you don’t use a wheelchair. Eliminating the need to step over a ledge or tub wall also greatly reduces your risk of falling. A roll-in shower is optimal but a shower bench is also a big help.

Many of these home adjustments can be done yourself, but always be sure to consult a professional when it comes to mounting grab bars and other furniture to the wall. Have a two-way dialogue when determining what modifications to make and exactly how they’re made; never get talked into anything you’re not comfortable with. When in doubt, get a second opinion and consult an occupational therapist on your best options. Professionals can be your guide to safety, but it’s important for you to have input on what will make your living arrangements comfortable and accessible.

The ability to live our lives safely, especially in our homes, is very important. Accommodations serve the invaluable purpose of ensuring the human dignity of people with disabilities.

If you rent, you should know your rights.

NMSS Brochure: At Home with MS

Life With Multiple Sclerosis Feels Like 'It's Always Something'

Life with MS feels like 'it's always something.' And for me it is. My MS butts in to my everyday life. While my disease is not life-threatening, it is life-encompassing.

When I got out of the hospital, we made quite a few changes. We had an overhead lift system installed for transfers with a sling because I could no longer bear weight on my legs. Now, when I want to get into bed, I have to have a sling positioned under me and get hooked up to the overhead lift. It swings me into bed which is, granted, a lot easier on me and my husband but is a constant reminder of my progression. We also had a roll in shower installed in our master bath. This is also easier than the old way of pivot transfers to a bath bench. But, as a 39-year-old woman, it still feels like a giant arrow pointing at me saying ‘I am disabled.’

Oddly, I never seem to be disabled in my dreams. But then I wake up and remember. The moment before I open my eyes, I find myself assessing how I feel, wondering what my body has in store for me today.

Being comfortable at all can sometimes be difficult. I am often in some degree of pain and have spasms and other symptoms. The thing with pain is that it varies so much from day to day. ‘Pain’ can really include a number of things - the MS hug (a tight, constricting pain in stomach and/or chest area), Lhermitte's sign (an electric shock type sensation up your spine when you tilt your head down), spasticity, paresthesia (numbness and tingling), and dysesthesia (burning, stabbing, or tearing pain).

On the other side, during my very best days I can do more than many other people suffering from chronic conditions, which I am very thankful for. I work full time and therefore feel productive which is very important to me.

MS does have a big impact on my life. I often see phrases like "You are not your illness." True, but staying myself and not getting wrapped up in it is the battle.

MS and Other Health Risks

You’d think having MS was enough. Unfortunately, multiple sclerosis brings with it a unique set of challenges, including a higher risk of certain other health issues.

MS is thought to be an autoimmune disease and progressive neurodegenerative condition. It affects the nervous system, which gradually impacts the whole body. When someone has MS, their body’s immune system slowly attacks its own myelin sheath, which is composed of the cells that surround and protect the nervous system including the spinal cord and brain. When these cells are damaged, the nerves are exposed, and the brain has difficulty sending signals to the rest of the body.

The disconnection between the brain and the organs, muscles, tissues, and cells served by the damaged nerves causes many of the classic MS symptoms, such as dizziness, vertigo, confusion, cognitive issues, trouble with coordination, and mobility issues.

MS can affect your vision.

·         Vision problems are often the first sign that something is wrong for many people with MS. Double vision, blurriness, pain, and problems seeing contrast can begin suddenly and affect one or both eyes. In many cases, vision problems are temporary or self-limiting, and likely result from nerve inflammation or fatigue of the eye muscles.

MS can affect your limbs.

·         Many people with MS experience a wide variety of symptoms that affect their limbs. Damage to the myelin sheath often results in pain, tingling, and numbness of the arms and legs. Problems with hand-eye coordination, muscle weakness, balance, and gait may occur when the brain has trouble sending signals to the nerves and muscles. These problems may start slowly and worsen as nerve damage progresses. Many people with MS first feel “pins and needles” and have difficulty with coordination or fine motor skills. As the condition worsens, limb control and ease of walking may become disrupted. In these cases, canes, wheelchairs, and other assistive technologies can aid in muscle control and strength.

MS can affect heart health.

·         People with MS appear to be at increased risk of heart disease, congestive heart failure, stroke, and peripheral vascular disease. To lower your risk, it's vital that you stay active and exercise, even if you're in a wheelchair, to keep your heart and blood pumping throughout your body.

MS increases the risk for blood clots.

·         Deep vein thrombosis (DVT) is the formation of a blood clot in one of the deep veins of your body, typically a leg. It’s particularly dangerous if the clot breaks loose and travels to a lung. Immobility, spasticity, and use of steroids are associated with a higher risk of DVT.

·         To prevent blood clots in your legs, avoid sitting or lying in one position for prolonged periods, and take short walks a few times a day. If you cannot walk, consider doing leg-strengthening exercises, modified as needed, to keep the blood flowing in your legs.

It’s hard enough having MS but it’s even harder to cope with MS when you have additional chronic health conditions or “comorbidities” - the simultaneous presence of two chronic diseases or conditions in a patient.

While you may rely on your neurologist for MS treatment, it’s essential that you assemble an entire health care team to manage your MS and comorbidities. It takes teamwork to keep you out of the hospital.

Accessible? (PART 2)

See part 1 here.

I found myself in the ER again last week. Due to a problem discovered in a routine clinic visit, I needed to be admitted to the hospital for a procedure the next morning. Unfortunately, I had to go through the ER process to wait for a bed in the hospital.

As one hour turned to two, I found I needed to use the restroom, desperately. But they didn’t have the ability to transfer me. The Hoyer lift they had wouldn’t fit in the restroom. (A Hoyer Lift allows a person to be lifted and transferred with a sling for those whose mobility is limited.) Then a doctor suggested I get into bed and use a bedpan. Not ideal, but a solution nonetheless. When they found a bed for me, a RN looked at me like, “OK, get into bed.” I told him I needed a lift to transfer me from my wheelchair to the bed. He asked, “Can’t you just stand and pivot…?” I heard “Can’t you just…?” quite a few times that day. Umm, no dude, I can’t. He sighed and said he’d have to find the lift. Once they found the lift, no one really knew how to use it. My husband had to show them what to do.

My ER visit was unacceptable. I was made to feel less than because of my disability. The Americans with Disabilities Act (ADA) guarantees full and equal access to health care services and facilities. This includes the requirement that employees are trained on proper patient handling techniques, operation of accessibility equipment, and how to assist with transfers and positioning of individuals with disabilities. The requirement is to provide equal medical services to a patient with a disability. Purchasing accessible medical equipment will not provide equal access if no one knows how to operate it. Staff must also know which examination and procedure rooms are accessible and where portable accessible medical equipment is stored. New staff should receive training as soon as they come on the job and all staff should undergo periodic refresher training during each year

People with disabilities had to create a civil rights movement in order to achieve visibility and legal standing. But the reality is that the ADA is an imperfect tool. The good news is that the ADA brought change and opened the door to creating new public attitudes. The not-so-good news is that we still have a long way to go.