Fighting Multiple Sclerosis

Sunday, March 27, 2011

How has being sick helped you? Really stop and think about this!!

I know I know your asking yourself, HELPED ME??? I bet you could think of lots of ways that being sick has not helped you but really stop for a minute and think, really look into yourself, who you are and ask yourself the question, How has being sick Helped Me?!?

I took that step and this is what I am finding. First, what an amazing question to get us all really thinking about what is important.

Lets see, well I have been sick all my life starting very young with migraines, seizure and brain surgery to save my life. With those I have always been very compassionate towards others. I thought, my goodness if I feel like this just imagine what they are feeling?! Empathy has always been a huge thing for me. Patience and tolerance are great things I learned.

Then the Multiple Sclerosis symptoms started and it took years before a doctor would listen to me and finally get a diagnoses. Well during that time I think being sick made me a very angry person, I mean I already went through my health issues as a child and now here I am in my 20's going through it again.

But now in my 30's with PPMS (Primary Progressive Multiple Sclerosis), Fibromyalgia, Chronic Fatigue etc etc etc the BIGGEST thing I have learned and "How being sick has helped me" is it brought back Patience and tolerance FOR MYSELF...See I had all these things for others but I never gave it to myself. So being sick has helped me by learning to give to myself. Give myself compassion, give myself LOVE, give myself patience for myself, give myself tolerance for my physical short comings.

So now not only am I caring person for others I can finally say I am a caring person for myself.
"I love myself unconditionally and I like loving myself" Those were the hardest words for me to learn to speak and mean and that is what being sick has given me and how it has helped me.

I really would like your feedback on this. Remember that all your stories are inspiration to others. If you don't have a chronic illness tell me how an injury has helped you. I really want to hear everyones testimony.

Hugs to All

Tamika Myers // Moving On // Music Video

Multiple Sclerosis Society

Friday, March 25, 2011

Continuing on with Fatigue

I just had to add to my previous post about fatigue.

Question: What causes fatigue in people with multiple sclerosis?

Fatigue is considered by many to be the worst part of multiple sclerosis, affecting 85 to 95% of those with MS. Indeed, on "bad days" it is unimaginably difficult to even meet one's basic needs, due to overwhelming tiredness that makes everything more difficult. As it turns out, MS-related fatigue is usually the product of several factors working together.

Answer: Fatigue in MS is caused by many factors, which can be grouped into those causing primary fatigue and secondary fatigue.

Primary Fatigue
Primary fatigue is the result of the disease process itself, and is caused by demyelination in the central nervous system.

“Lassitude” is an overwhelming tiredness that is not directly related to increased activity.
Heat sensitivity fatigue comes from the heat intolerance many of us with MS experience due to hot or humid weather or raising our body temperature through exercise or exertion.
There is also something called “short-circuiting” or “localized” fatigue, where affected nerves of individual muscle groups tire with use, such as your legs after walking or your hand after writing.

Secondary Fatigue
Secondary fatigue is not caused directly by the MS itself, but is usually a result of MS symptoms or trying to compensate for them.

Sleep disturbances are common in people with MS, due to spasms, depression or anxiety, pain, the frequent need to urinate at night (nocturia) or because of side effects of medications (corticosteroids like Solu-Medrol are notorious for causing sleep disturbances).

Exertion causes fatigue in people with MS when they constantly need to compensate for symptoms like spasticity or muscle-weakness, which may make it harder to walk, keep your balance or complete tasks around the house.

Some medications also cause fatigue as a side effect, including those taken specifically for MS, including the disease-modifying therapies which are made from beta-interferon (Avonex, Betaseron and Rebif), Tysabri and Novantrone. Fatigue is a side effect of some medications taken for MS symptoms such as spasticity (including baclofen, Valium and Zanaflex) or pain (including Klonopin and Neurontin). Others include medications for high-blood pressure, allergy medications and others containing antihistamines, and anti-anxiety drugs.

Depression often causes people to feel overwhelmingly tired. In some people, the fatigue itself causes depression. Some of the medications used to treat depression can also cause fatigue.

Lack of proper nutrition also causes swings in blood sugar leading to general tiredness.
Infections, such as colds, flu or urinary tract infections can cause fatigue.
Lack of physical fitness can greatly contribute to fatigue.

Here is a story I came across that I can so relate to and just had to share:

"As a long-time sufferer of MS-related fatigue, I think my worst fatigue is usually a combination of many of these factors. On my most challenging days, I’ll experience the crushing, overwhelming fatigue of MS “lassitude” from the minute I get up. I’ll try to self-medicate this with caffeine, which usually means I end up taking a really long nap too close to bedtime. I try to fix that with a tiny sliver of a prescription sleep medication, which leaves me a little drowsy the next day. Of course, during a day like this, the last thing on my mind is exercising. Add to this equation the fact that I don’t feel like cooking, and end up surviving the day eating unhealthy snacks. The icing on the cake is my heat intolerance, which deflates me during any trips outside in hot months unless I take precautions. I have also learned that for me any alcohol greatly contributes to this cycle. This is okay, because by evening on days like this, I am usually too tired to lift a wine glass, anyway."

Once again, Thank You for reading and I look forward to your comments.

Our Fight with Relentless Fatigue

So how many of us out there battle fatigue on a daily basis? I myself fight it everyday with some days being a little better than others. I have to sit back some days and think about how this will be how I feel for the remainder of my life. I like so many others fight this ugly part of MS with all I have. I can't just give in to it b/c I have a little boy who depends on me to be mommy. Don't get me wrong fatigue has been known to destroy a lot of my days and has stopped me from doing so many things I love. I want to know how others are fighting against there fatigue. At this point I do take something for it but have to be careful and only take a little do to my heart. I currently walk on the treadmill to try and keep my legs active and to also help strengthen my heart and have found that this little act of exercise helps just enough with the fatigue and allows me to get on with my day.

How do we explain fatigue to our friends and family so they will understand? How can we explain it so they don't think that just a simple nap will help. We wish everyday that taking a nap would help bring our bodies back to speed. The sad truth is that naps and sleep do not help. We all know in our own lives how fatigue and tiredness are two completely different things but to help explain this I did a little research and found this. I hope this will help you and also help with trying to explain to others how fatigue impacts your everyday life.

What is Multiple Sclerosis and Fatigue?

Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night's sleep solves the problem.

Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life.

According to the National Multiple Sclerosis Society, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue.

So the best way to combat fatigue related to your MS is to treat the underlying medical cause. Unfortunately, the exact cause of MS-related fatigue is often unknown, or there may be multiple causes. However, there are steps you can take that may help to control fatigue.

My goodness with this against us how do we control our fatigue? How do we handle it? I also found some neat tips on how we might start to control our fatigue. Here are some tips:

1. Assess your personal situation.

Evaluate your level of energy. Think of your personal energy stores as a "bank." Deposits and withdrawals have to be made over the course of the day or the week to balance energy conservation, restoration, and expenditure. Keep a diary for one week to identify the time of day when you are either most fatigued or have the most energy. Note what you think may be contributing factors.
Be alert to your personal warning signs of fatigue. Fatigue warning signs may include tired eyes, tired legs, whole-body tiredness, stiff shoulders, decreased energy or a lack of energy, inability to concentrate, weakness or malaise, boredom or lack of motivation, sleepiness, increased irritability, nervousness, anxiety, or impatience.

2. Conserve your energy.

Plan ahead and organize your work. For example, change storage of items to reduce trips or reaching, delegate tasks when needed, and combine activities and simplify details.
Schedule rest. For example, balance periods of rest and work and rest before you become fatigued. Frequent, short rests are beneficial.
Pace yourself. A moderate pace is better than rushing through activities. Reduce sudden or prolonged strains. Alternate sitting and standing.
Practice proper body mechanics. When sitting, use a chair with good back support. Sit up with your back straight and your shoulders back. Adjust the level of your work. Work without bending over. When bending to lift something, bend your knees and use your leg muscles to lift, not your back. Do not bend forward at the waist with your knees straight. Also, try carrying several small loads instead of one large one, or use a cart.
Limit work that requires reaching over your head. For example, use long-handled tools, store items lower, and delegate activities whenever possible.
Limit work that increases muscle tension.
Identify environmental situations that cause fatigue. For example, avoid extremes of temperature, eliminate smoke or harmful fumes, and avoid long hot showers or baths.
Prioritize your activities. Decide what activities are important to you, and what could be delegated. Use your energy on important tasks.

3. Eat Right

Fatigue is often made worse if you are not eating enough or if you are not eating the right foods. Maintaining good nutrition can help you feel better and have more energy.
4. Exercise

Decreased physical activity, which may be the result of illness or of treatment, can lead to tiredness and lack of energy. Scientists have found that even healthy athletes forced to spend extended periods in bed or sitting in chairs develop feelings of anxiety, depression, weakness, fatigue, and nausea. Regular, moderate exercise can decrease these feelings, help you stay active, and increase your energy.
5. Learn to manage stress

Managing stress can play an important role in combating fatigue. Here are tips to help keep stress in check:

Adjust your expectations. For example, if you have a list of 10 things you want to accomplish today, pare it down to two and leave the rest for other days. A sense of accomplishment goes a long way to reducing stress.
Help others understand and support you. Family and friends can be helpful if they can "put themselves in your shoes" and understand what fatigue means to you. Support groups can be a source of comfort as well. Other people with MS understand what you are going through.
Relaxation techniques. Audiotapes that teach deep breathing or visualization can help reduce stress.
Participate in activities that divert your attention away from fatigue. For example, activities such as knitting, reading, or listening to music require little physical energy but require attention.

If your stress seems out of control, talk to your doctor. They are there to help.

I really hope all this has helped you like it has helped me. I also hope you feel free to talk to your doctor about your fatigue. You never know if your fatigue could be a sign of an underlying medical condition. Please feel free to share this information with your loved ones to help them understand a little better what it is you are battling. We can not expect others to understand what it is we battle with our MS or other Autoimmune Diseases if we don't explain it to them. We have to be willing to be patient with them while they learn either from us, our doctors or by reading up on the issues. For all the caregivers out there, first I would like to say thank you for all you do for us I know it is not an easy job. With this said please be patient with us and allow us the freedom to talk to you about what is going on in our bodies.

So many hugs and prayers for all you out there.
Your Friend, Nickey

Tuesday, March 8, 2011

A New Beginning

First I would like to say, It has been a while since my last blog and for that I apologize to my readers. With that said I have a few things I would like to share.

Something that has been going on with me is the wonderful MS Bear Hug. This has been coming on and off for a little over a month now. Just this evening I was having a wonderful conversation with a Dear friend and it was pointed out to me that during our intense conversation the bear hug seemed to be gone. Not that it was completely gone but my mind was off of it and my stress level had been reduced. So I think for future bear hugs I will be practicing relaxation and meditation or another great talk with my friend. About a month ago I ended up catching a horrible cold/flu that took it's tole on me. Over the last couple weeks I started noticing my symptoms had gotten worse and the pain more intense to the point I was NOT sleeping at all. Made that dreadful call just to have my Neuro say he thinks I am having an exacerbation. It has been pretty intense except for one day when I got super mans boost of energy and accomplished the task of a few house hold chores. People let me be the one to warn you when your body is acting up energy or no energy it is not the time to go all commando on your household chores.

Something else that has been noticed that I would like to touch on is depression. There have been so many of us depressed and the question as come up, is this being depressed b/c of MS or is MS actually making us depressed? There was some research found that suggest that in some of MS patients the patient has no control over there depression. You can actually get damage to that part of the brain that will in turn cause you to be depressed. Just a little something to think about and maybe a good topic to bring up at the next Doctors Appointment.

I don't have much else to blog about this evening except the evil fact of no sleep is hitting again. Maybe that will be tomorrows while I'm trying to stay awake.

God Bless to all
May you be freed of your Aces and Pains