When I was first diagnosed, my initial reaction was “whatever”.  I am fine, the doctors are wrong and this “MonSter” (as those of us living with MS sometimes refer to it as) is not going to affect my life.  It is kinda funny because I had spent months wondering what was wrong with me and when I finally get an answer, I wanted to pretend I didn’t hear right. 

I quickly learned that denial does not serve your general well being.  Because when you are pretending you don’t have a problem, then it is really difficult to create solutions.  It really took me a few months to get out of my own way so that I could be open and receptive to the treatments and lifestyle changes that were going to benefit me.  Not that I am proud of it, but it took me six months to agree to go on MS treatment after I was diagnosed.  Starting those injections was like stripping away the last bit of denial that I was clinging to and stepping full force into accepting that I have a permanent illness.

Once you allow the denial to fade and can accept the reality of your situation, you will find that you are not as scared.  Denial is a protective response when we are feeling fear and resisting change.  But, you can’t face your fear and confront fear with facts until you remove denial from the equation. 

Shedding your denial can be done in phases, or all at once, like ripping off a bandaid.  Sometimes, we hold onto denial because we fear we will be overwhelmed by all the decisions, information, choices, opinions, etc. that we have been afraid to face.  It is importan to remember that you are in charge of your healthcare journey.  You only have to absorb as much at a time as you are comfortable with.

So, this holiday season while you are hopefully surrounded by friends and family, try shedding some of your denial.  Figure out what is under the denial and walk through it.  It is not as scary as you think!

Feldenkrais Method

From Cathy Wong, for About.com

Created: February 1, 2005

About.com Health’s Disease and Condition content is reviewed by our Medical Review Board

What is Feldenkrais?

Feldenkrais is a form of movement re-education developed by nuclear physicist and engineer Moshe Feldenkrais after suffering a sports-related injury. Rather than undergo surgery, he explored alternatives and created his own form of rehab integrating physiology, anatomy, martial arts, psychology, and neurology.

A key principle of Feldenkrais is that the way that a person speaks, moves, and thinks is based on the self-image that person has developed over the years. In order to change the way we move and carry ourselves, we have to change how we see ourselves.

Feldenkrais recognized the importance of proper breathing to movement. He also believed that postures and movements reflected the state of the mind and body. For example, a depressed person may have hunched shoulders.

Conditions Treated

• Muscle pain
• Back pain
• Neuromuscular conditions, such as cerebral palsy and fibromyalgia
• Repetitive strain
• Multiple sclerosis
• Performance enhancement for dancers, actors, athletes
• Sports injuries

What a Typical Feldenkrais Treatment is Like
With Feldenkrais, there are two approaches:

• Awareness Through Movement group classes - Led by a teacher, these classes increase mobility and help replace old patterns of movement with new, improving breathing and blood circulation. Classes are popular with actors, musicians, and dancers.
• Functional Integration individual sessions - One-to-one sessions, using touch and tissue manipulation, where the practitioner actively directs the client’s body through various movements tailored to individual needs.

So, the above is a description of a new type of physical therapy I am trying for chronic knee and foot pain related to my MS.  Traditional physical therapy left me very tired and actually made my pain worse in many ways. 

For one, it is easy to over work muscles when you are dealing with neurological weakness.  I have decreased sensation in my left extremity so I don’t”feel the burn” so to speak, when exercising.  But, if I overwork a muscle I will feel it days later and it is not a good thing!  Secondly, strengthening exercises are not always helpful with neuro weakness.  It is the messages the muscles are receiving from the brain that are usually the problem.

I decided to give this type of PT, known as the Feldenkrais method a try, because a friend of mine is a practitioner and said she thought it would really help with the chronic pain issues.  Well, I am so impressed!  I have been twice so far and my balance is already improving in my “bad” leg and my pain is decreased.

I am not a doctor nor a physical therapist but I have found this helpful and wanted to pass along the information as an alternative therapy option.  Have you or someone you know had success with this?  Tried it and didn’t like it?  Let me know!

It is important to discover ways to minimize the impact of chronic illness on the other members of your household.  Yet, at the same time it is the challenges we face in life that make us stronger.  That leaves us with a delicate balance to achieve between over and under protecting our loved ones from what we deal with as a result of our illnesses on a daily basis.  While I am quick to remind you all that I am by no means an expert (just a woman living with MS) these are the things I have learned while striving for said balance for my family:

• Your family member’s are not stupid, so don’t treat them like they are.  Don’t say you’re fine when you aren’t and don’t milk your symptoms to get what you want (yes, I have done that a time or two).  Just be yourself.  Your spouse and kids will feel much more at ease if they feel like they can trust you when you say “It’s nothing, I’m okay” or “just let me be for minute”.  If you aren’t honest with them, then communication can become very difficult and everyone is going to feel misunderstood and even used.
• There are things that children do not need to know specifics about, such as finances and treatments.  My tweens know generally that my care is expensive and that means that, at times, they will not be getting the latest gadget or video game.  But, they do not need to know the extent of our financial situation.  They have enough things to worry about, the biggest being navigating adolescence!
• Resist the temptation to downplay or minimize your loved one’s physical issues.  Sometimes, when my hubby complains about a shoulder aching or being tired, I am soooo tempted to say “shut up, whiney pants!  I am always tired and something(s) always hurts”.  But, most of the time, I remember that he does not live in my body (good thing, I don’t think he could take it and he isn’t telling me about his pains to ignore mine or one up me.  He is sharing his issues with me because I am his wife and he (even when I don’t) realizes that I am not just an illness, but still his partner on this journey through life.  So, be thankful for those moments and treasure them.
• When you lash out in anger, snap at your kids, cry at the drop of a hat or sleep through dinner- apologize.  Not for your illness (since that is beyond your control) but for your behavior- which you can control.  Acknowledge when you are taking out your overall crankiness on your family and let them know you are aware and trying not to do that.  That will go a long way in easing resentment and the feeling that they have to walk on eggshells around you.
• Plan your day so you are at your best when your family is around.  For instance, I am at my best in the morning but my kids are at school and my hubby is at work.  So, I try (even when I don’t feel like it) to take a nap before they return home so that I am refreshed and ready to be the best mom and wife I can be for the few hours each day I get to spend with them.
• One of the most important things is to not let the Devil whisper in your ear that you are a burden and a problem to your family.  They love you and they need you.  Becoming ill does not change that.  In fact, in many ways it intesifies their need to know that you haven’t changed, even if your body and abilities have.  Remember that you are still the person you were pre-illness, but some areas of your life may need some renovation. 
• Reach out.  Don’t shut them out just because you don’t want to bother them.  My eleven year old is the best hug giver.  It blesses him to hug me when I am feeling down as much as it blesses me to be hugged.  Let them do what they can and let that be a blessing to all.

 What are some ways that you manage your illness as it relates to your loved ones?  Share it with me in the comment section below.

It is far too easy to become victim to your emotions and start to feel like a huge burden to the support network you have worked so hard to build.  For example, in addition to my usual low energy, easily irritated, chronically ill self, I have mangled my foot trying to be supermom** last week.

I am now on crutches- which I should really tape and put on YouTube because when you have balance issues and vertigo combined with a bum foot and crutches, it is (according to my hubby and children) freakin’ hilarious!  The little that I already accomplish and contribute to the running of my household has screeched to a halt while I ice my foot and lick my ego.

I am a Type A perfectionist, overachieiving, demanding (especially of myself) individual who detests feeling like a burden.  And with situations such as this I can very easily fall into the woe is me, they would be better off without me around pity party.  I have thrown such pity parties before, trust me!

But this week, my wise grandmother suggested that I stop viewing myself as the problem and look at the limitation I am facing as the problem.  Instead of being mad at myself and feeling inadequate that I can’t make it downstairs to tuck my kids in- get creative and figure out ways to make it work.  Look at the inaccessability of our lower level as the problem, not my inability to manage steps without breaking something.

Well, that way of looking at the situation went a long way in helping me feel less of a problem and more a part of the solution. So far we have purchased a wireless chime thingy so that I can press a button and the boys will know to come up for dinner, etc.  My hubby is installing a nanny cam type device in the rec room and the TV room so that I can look at how messy it has gotten and tell the kids when it is time to clean up.  (I have to admit that I sit upstairs and obsess about how messy it must be down there, I can’t help it :-)  We also learned that I can ride my scooter around to the outside entrance of the basement when I REALLY need to be downstairs and forego using the steps at all.

My point here is that I didn’t think of any of these solutions until I stopped looking at myself as the problem (hello, can’t heal myself) and focused on the facts of the situation.  Fact over emotion is often a good way to look at things that bring up strong emotion. 

**and just a note about supermom- Chronically ill supermom is one that manages to paste a smile on her face, ignore her pain and aches, and complete tasks that prior to her diagnosis were trivial and taken for granted, such as doing laundry, going downstairs to tuck her children into bed or playing mom taxi six nights a week.  Inside, we beat ourselves up for not being the mom we used to be, the wife we never were (I mean who am I trying to kid LOL) and the woman that seems to have betrayed us in our own body.  The body that feels like it belongs to someone else because it sure doesn’t perform like the old me.  When you try to play supermom** you will pay.  It may not be right away but the illness that you have will catch up to you and bludgeon you with symptoms. So, please for the sake of yourself and your health, let supermom go.  Just be the mom you can be and that is good enough.

When you are living with a chronic illness having a support system is critical to your health.  Support comes in many different forms.  There is professional support from the medical community, there is emotional support from your friends and family, spiritual support from a religious community and belief system and physical support from medications, alternative therapies, etc.  However and wherever you find support is fine.  It is just imperative that you have a support system.  We were not designed to go through life alone and certainly not during difficult times.  And, let’s face it:  living with a chronic illness is one difficult time after another. 

We need people to come alongside us and pick us up when we are down, tell us what step is necessary for treatment, pray with us, hold our hand or slap (not literally, but with words as only good friends can) us silly to get us out of our funk.

So, how do you find support? Or, maybe more importantly, how do you accept the support?    Sometimes, it is so hard to let people help us.  Reaching out for support and building your support system requires vulnerability and it also requires you to have shed any residual feelings of denial about your condition.  Asking for help, admitting you can’t do this alone means putting aside pride and replacing it with relationship.

Here are ten things that have helped me in building a support network for myself:

1. Go small.  By this I mean, do not make it your goal to cast a net and build a support organization, rather than network.  Not everyone is going to be right for your team.  Don’t be so anxious to have support that you turn off your discernment and intuition.  I always remind myself that Jesus surrounded himself with many people, but only kept twelve in intimate relationship.
2. Number 1 was a word of caution is as number 2.  Resist the urge to go it alone.  If you are anything like me you want to get a big bullhorn, stomp your feet and scream “I can do this myself”.  Let go of that or you will push away the very people God has sent to be part of your support network.
3. Take advantage of the internet and technology.  I have met so many wonderful people through online medical sites, online support groups, the National MS Society website, etc.  Google your particular “thorn” and you will be amazed at the deep and supportive relationships you can build with people going through exactly the same thing as you.  And, someday, when the dust has settled on your new diagnosis, you can be a cheerleader to someone.  I have only been diagnosed since January 08 and have only been on treatment since July but have already had the opportunity to comfort the newly diagnosed as well as be comforted by invisible illness veterans.  This type of support is invaluable.  (at the end of this site there will be links to some websites I have found helpful)
4. Check out local resources.  Some churches and hospitals have support groups (although I always caution that support type groups need to focus on the positive and not turn into a group pity party) and many national associations have local chapters that can provide you with information on physicians, physical therapists, prescription assistance, etc.
5. Remember that family and friends are human and do not know what it is like to live in your shoes.  So, as much as they want to be there for you and as much as they genuinely care, they will say the wrong thing; ask the wrong question; give bad advice and make you feel like a burden at some point.  Cut them slack and forgive quickly.  They are (i certainly hope) doing the best they can.
6. Play on strengths.  If you have a friend that is great at encouraging but really gets uncomfortable talking about the details of your condition, then let that person be the one you call when you are feeling down- not when you need to talk about your injection site reactions, your bladder incontinence or the horrible phlebotomist experience!  Don’t write somone off just because they can’t be your whole support team wrapped into one person!
7. Be a good friend back.  Somedays, I am a grump because I am in pain, tired, blah, blah, blah.  But, I will either apologize in advance or go back and apologize if I have snapped at someone or not returned a phone call.  Remember birthdays, thank them for what they do for you.  Never, ever take your friends and family for granted.
8. Try not to be (what my friend Rebecca refers to as) a ‘Debbie Downer”.  Your illness is a part of you, it does not have to define you.  Allow the joy of the Lord to be your strength and keep a positive attitude.  You will be amazed at how many positive people that will attrace to you as a result!
9. In the same vein, be authentic.  If you are having a bad day, try not to put yourself in situations where you will have to put on the “happy” face and pretend you’re fine.  It is perfectly okay, and sometimes the best for your overall health, to call and cancel something than to overextend yourself and pay the price later.
10. Be true to yourself.  Surround yourself with people (virtual and in real life) that make you feel good, that support you without judgment and that love you, illness and all!

Be sure to check out these links for more information:

http://www.cafechronique.com

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http://www.cafemom.com

http://www.feelchicboutique.com

You will keep in perfect peace him whose mind is steadfast, because he trusts in you. Isaiah 26:3

I have not been able to take any anti-inflammatory meds for the almost two months since I was hospitalized for a pulmonary embolism in September (and almost died, but that is for another post :-)and discharged home on a blood thinning medication. When you are on such meds you can’t take ibuprofen, etc. because of the risk of internal bleeding. So I have been dealing with more pain then I usually do. Ibuprofen, albeit in quantities probably made for someone four times my size, really helped to control the neuropathy in my left leg. Tylenol ain’t cutting it and I refuse to take anything stronger because I don’t want my cognition affected- I don’t find the dizzy, head in the clouds feeling conducive to driving or parenting, etc.
Then to top it all off, my wonderfully supportive hubby has been working 72+ hours a week, trying to meet a deadline for a project at his job.  He really takes the brunt of the evening parenting tasks and I am exhausted from filling his (which used to be mine before I was ill) shoes this week.  My whole body hurts, I fell in the shower which just added to the pain in my leg and added pain to my foot, and have been having excruciating headaches, probably from the stress of it all.  My flesh wants to crawl into a ball, have myself a good ole pity party and go to sleep until I feel better.
And, the chronic pain has really left me feeling negative at times. The poor me’s set in. Why do I have to hurt like this? Why won’t God cut me a break for once? Don’t worry, He has already heard me say these things to Him…and then I sat in my Thursday morning Bible study last week. I listened, cried, laughed, prayed and learned with my fellow sisters in Christ for two hours. And it wasn’t until I left that I realized I hadn’t thought about the pain in my leg the entire time.

Which leads me to this verse in Isaiah. God offers us perfect peace, from whatever is ailing our mind, hurting our bodies and troubling our souls. According to the Vine’s Complete Expository Dictionary, perfect is used as an adjective (as it is in this verse) 91 times and comes from the root- Tamim. This means “perfect, blameless, sincere, entire, whole, complete, full”. So, this verse promises perfect, blameless, sincere, entire, whole, complete and full peace to those of us that keep our minds steadfast (steadily focused on) God. 

He also calls us to be patient in our circumstances.  Patient in this sense is not referring to the “hurry up” syndrome that is so common in our society.  We are used to going through the drive thru and the Mickey D’s employees goal being to serve us in 90 seconds or less.  Any longer than that and we get frustrated.  We call this impatience.  But, this is not what God was referring to.  Patience in the context of Job and Paul is usually traced to the Greek word- hupomone.  This means perseverance and endurance.  Patience is having the endurance and perseverance to realize that my physical pain, this thorn in my side, is temporary and on the other side of Heaven I will not experience it.  It is only for now and if I can endure (which through the strength of Jesus Christ I most certainly can) my patience will so be worth it.  I’m getting a new, disease and chronic pain free, body in Heaven someday!  That is worth enduring this life and it’s trials for-don’t you think?

Now, I don’t know about you, friends, but that is exactly the type of medicine I need, peace and patience for my pain. I, in no way, mean to trivialize or downplay the effects of living with chronic pain. I am there with you and there are days that it can literally suck the energy and desire to function right out of my day- if I let it. We do have a choice. And I want to choose peace over pain.  Patience in my circumstances.   It is my prayer that God gives me the strength to do that and provides the same perfect peace to you!

In II Corinthians 12: 7-10, the apostle, Paul, speaks about the “thorn in his side or in his flesh”, depending on the translation you are reading.  The definition of thorn in that context is a pain, suffering or physical infirmity.  We all have thorns in our flesh!  Some of us have more than one.

My biggest thorn is multiple sclerosis.  I was diagnosed with MS in January of this year and the journey through a new chapter of life, that is filled with doctors, opinions, chronic pain, fatigue, brain fog, etc. has become an adventure. 

When we are faced with a thorn in our side, we can fight it, we can ask God to remove it or we can embrace it and figure out what we are supposed to be learning from it.  That is where I am at right now.  What am I supposed to learn from this?  How can I help others through my experiences with a chronic and sometimes invisible illness?  How can I be strong enough in my faith to remember that God’s grace is sufficient for me, just like He promised Paul?

This blog is my journal of that journey.  Please join me!