The New Normal

The New “Normal”

What do you consider “normal” in your life? Please take a second and really think about that. What habits do you have? What do you feel compelled to do EVERY morning before work, after dinner? What TV shows do you almost refuse to miss? Who, in your life, do you expect will always be there, being able to do the things they’ve always done?

“Normal” is an illusion. The reason I say this, is because it holds a different meaning for everyone. What one person considers normal, another may think is just plain weird. What one person says they can’t live without, another will say there’s no way they could live WITH. So, basically, normal is what YOU say it is, and it is open for change depending on your circumstances.

We have events in our lives that change our “normal”: graduation, marriage, the birth of children, the loss of loved ones, deeply religious experiences, illness (of ourselves or loved ones), and tragedies that touch our lives. Any and all of these things can have an impact on what we consider part of our daily life. And the way they impact us can help us to grow as people, or make us want to crawl into a hole and tell the world to go away.

What I would like to discuss is what “normal” means to me in regards to CIDP. My normal has changed. Gone (for now) are the days when I could just wake up, hit the floor running and not look back until bedtime. Driving is a hit and miss proposition. Eating can be an adventure, as food generally doesn’t like staying on a fork that’s bouncing like I’m on a treadmill. And, walking like Frankenstein can take its toll on your self-image, LOL!

But, the above is now my “normal.” Until my treatments become more effective (IF they do), that’s what I have to work with. I get tired…quickly. I have to pace myself throughout the day to make sure I get through the day. I walk slower than I used to in order to make sure that my legs hold up and I can get where I am trying to go. Working out? Not like it used to be. I was doing P90X when this illness hit. Now, I’m happy to rip off 12 knee push-ups. I even eat more slowly because my jaw muscles get so tired, just from chewing. My “normal” has changed.

This happens to everyone that has CIDP or Guillaim-Barre’. We, and our families, HAVE to make adjustments to our lives to ensure that we can meet the needs of our families. There are times when we can’t go to some events; there are activities that we just can’t join in, anymore (even though we used to, and WANT to). We have to be smart about our limitations, as pushing past them can lead to feeling horrible, relapse, and even injury due to excessive fatigue (I’ve almost hyper-extended a knee a couple times).

So, why even bring this up? Seems pretty straight forward. I mean, if someone is sick they should take care of themselves, right? The problem is that people with CIDP don’t always LOOK sick. If you see someone with CIDP one day, you could think they look great, and then the next day they can barely walk. This is confusing for some. Sick is sick, and well is well to most people. The one phrase that many people with this condition hear is, “But you don’t look sick.” Ouch. Many people don’t realize what it’s like to feel like you’re coming apart at the seams, inside, while the outside seems to be fine.

With me, that’s not an issue. It’s pretty obvious what goes on with me, as I have a difficulty functioning at various times throughout the day. And, I have a great group of people that I call my family, and a wonderful employer. I can NOT ask God for any better situation in which to be ill. CIDP happened to me, and God has given me the necessary support. My family, coworkers, church and friends have all been incredible.

But, for others, they suffer by themselves. Their spouses think they’re just being lazy. Their employers don’t understand (or don’t care) and force them out of their jobs. Their friends get aggravated because they can’t do the fun things they used to do. Kids don’t understand why Mom or Dad doesn’t play with them like they once did. And there is ridicule that follows these situations which doesn’t make it any easier. Others, often, don’t understand that those with CIDP WANT to get up and go as they please. They WANT to do their jobs, effectively. They WANT to still go and hang out with friends and WANT to play with their children.

And, they CAN. They just have to make adjustments. They need to be able to rest when they need to. They need the time off for treatments. The activities may need to be altered as to not promote a “flare up.” But, this takes understanding of ALL parties involved. It takes patience. And, it takes love.

This is not to make anyone feel guilty. This is just me stating where people with CIDP are coming from. There are going to be “woe is me” days. There are going to be days when I’m just mad at the world for having to deal with this. It’s not personal…it’s just me being human. And there are going to be days when I am happy, doing well and not complaining a bit. That’s what happens with this disease and how it affects us.

Please know that, personally, I am grateful to all those who have been a comfort and support for me and my family. I don’t want to list people by name, as I’m afraid I’ll leave someone out, and I don’t want to do that. The one I will mention (and will ALWAYS mention) is Jesus Christ. He has helped me more than anyone. He has been my confidant, my guide, and my comfort through all of this. There is no way that I get through this without Him.

About CIDP and Guillain-Barre' Syndrome

Since this is the first time I’ve ever “blogged,” I hope that you’ll be patient, as this may seems like indiscriminate rambling.

My intent with this is twofold:

 1. To get information out about a condition known as CIDP. I want people to understand the effects it can have on the patient, their families, their work and just their overall well-being.

 2. I need to vent. Having dealt with this disorder for a little over a month, now, I can tell you that this disorder sucks on gigantic proportions and there are times that I just want to rail against feeling so darned bad.

What I want to do, first, is tell you a little bit about CIDP (Chronic Inflammatory Demyelinating Polyneuritis). Many people have heard of Guillain-Barre’ Syndrome, but not many have heard of its cousin, CIDP. Guillain-Barre’ Barre’ (which usually sets in after the patient has had an immunization or the flu) is an acute (short lived) disorder of the autoimmune variety. Meaning, the patient’s own immune system attacks them. In the case of Guillain-Barre’, the immune system attacks the patient’s nerves, removing a signal-conducting coating known as myelin. With the myelin removed, nerve signals cannot travel to the muscles, thereby rendering the patient immobile. This is very dangerous, as ALL muscles may be affected (including the diaphragm), and the patient may need to be placed on life-support. Guillain-Barre’ comes on very quickly, usually reaching its peak in 3-4 days (sometimes a week). It can take several years for a patient to regain their strength, and most (85-90%) make a complete recovery. To date, it is unknown how or why Guillain-Barre’ occurs. It has been speculated, however, to have a genetic component.

CIDP is known as the chronic form of Guillain-Barre’. CIDP can come on over a period of weeks, but progresses, usually, much more slowly. Weakness, tingling and lack of coordination in the lower extremities are usually the first signs that there is a problem. Pain in the lower back may make the patient believe that they have a back issue, and delay getting checked out (I am guilty of that). The disease mechanism for CIDP is very similar to Guillain-Barre’. Myelin is removed from the nerve endings, but also affects sensory nerves (touch, taste, smell) as well as motor nerves. Weakness/stamina are the biggest issues with CIDP, with patients reporting that they have markedly decreased endurance. Imagine trying to run a 400hp electric motor using stereo wires to conduct the power. That’s just not going to happen. That is what it is like trying to get your body to run without myelin on the nerves. The signal won’t conduct, so the muscles won’t work. So, while CIDP is not as aggressive, it is more persistent. CIDP can last anywhere from a couple of months to the rest of the patient’s life. It has been shown that the longer the patient has the active condition, the less likely it is for them to make a full and complete recovery.

Treatment for both disorders is very similar in practice, but varies in scope. With Guillain-Barre’, the treatment is aimed at getting the acute phase of the disorder handled, and making sure that there are no life-threatening implications, such as the loss of the patient’s ability to breathe. Plasmapheresis, IVIG infusions, steroids and ventilator support may all be used (although plasmapheresis and IVIG are the two most accepted treatments). Once the acute phase is under control, therapy for GBS patients is essential. Patients need to re-learn how to walk, eat, bathe and other daily tasks that their muscles/nerves have forgotten how to do. This portion of the recovery was often overlooked in the early treatment of GBS, but has since been recognized as one of the most important aspects of treatment.

CIDP is treated with plasmapheresis or IVIG, along with high dose steroids, gabapentin, baclofen and other medications to deal with the various symptoms. IVIG (intravenous immunoglobulin) is given at a dose/frequency determined by the physician. The dose is based on patient weight (which needs to be monitored while the patient is on steroids) and the frequency is based on how well the treatment is working and how long the effects last. These infusions may be given at home by a nurse, or the patient may go to an outpatient center at a hospital, as the patient has to be monitored for any signs of a medication reaction. The medication is given at a very slow rate to minimize the chance of a reaction, and may take up to 4-5 hours. Some patients receive these infusions so regularly, that they need to have an implanted port surgically put in so as to “save” the veins in their arms.

To speak, personally, I am currently undergoing bi-weekly treatments of IVIG, and I am on gabapentin and steroids (although I am tapering off the steroids). To this point, the IVIG has helped, but for very short periods of time. The doctor says I may need to go to treatment every week, but we’ll see. I am very fortunate that I have a neurologist who understands this disorder, and is working diligently to help me get it under control. If this is something that I’m stuck with for the rest of my life, so be it. I would love to see it go away, but the evidence has shown that probably won’t be the case.

One thing I do believe in, however, are miracles. Sometimes those miracles don’t come in the form of healing, but in the trials and tribulations that come your way. They redirect your path and show you where you’re going wrong. Sometimes, they show you what’s important. I will accept whatever it is that Jesus has in store for my life, as He is the one who made me, and He understands where my meager mind fails.