Article about living with CIDP…

2 Comments Posted

Disability? What Disability?
Overcoming the Reality, Stigma and Pain

By Jerry Farris

Someone once said: “Really lucky people do not necessarily have the best of everything; they are the ones who make the most of whatever life throws at them.” In my case, it’s more like, disabled people do not necessarily have the best in life; they simply take what life has thrown at them and make the most of it.

I can’t speak for everyone who has a disability, for we are all different as we are diverse. My disability may not be as severe or disabling as someone else’s, but it has had a profound impact on my life and career.

I suddenly found myself on the floor in incredibly unbearable painI have a rare neuromuscular disease that is not supposed to be sudden in its appearance, nor disabling or hereditary. Mine, it turned out, was all three and then some! Chronic Inflammatory Demyleanating Polyneuropathy or CIDP, is generally one of those slightly aggravating diseases that doesn’t stop you in your tracks, and you go about your life like other “normal” people with occasional muscle discomfort and perhaps balance problems at times. Not so with me (who likes to be like everyone else, anyway?)!

I awoke one morning at 5 o’clock to go to my nursing job. When I tried to stand up to go shower, I suddenly found myself on the floor in incredibly unbearable pain – all over! I somehow managed to drag myself into the bathroom and pulled myself up.

I tried to yell and wake my daughter who was sleeping upstairs, but found even my voice was barely audible. So I banged on the pipes and radiator until she came downstairs.

So began my battle with what was initially a “fever of unknown etiology with partial paralysis.” Years in and out of hospitals with muscle spasms, muscle pain, grossly abnormal (yet otherwise unexplainable) muscle tests followed. Still, nobody had an answer as to what was wrong.

After the initial three-month stay in the hospital and rehabilitation, I went home in a wheelchair. I was told I would never walk again; but I decided I would, and painfully worked to that end. After another few months I was on a cane and returned to work as a nursing supervisor.

But as fate would have it, I could not continue in the nursing career I had worked at for nearly 30 years. I developed diabetes and severe foot-drop and was told I had become a liability; I was forced to retire. The muscle pain and partial paralysis of my lower limbs increased and I was once again in a wheelchair. Upset with my lot, I became active in volunteering at the Veterans Administration Out-Patient Clinic in my town, and worked in the Physical Therapy Department for six years. I didn’t do much, just made appointments and became good friends with the therapist there. She and I began a therapy program to try and improve my balance and strengthen my leg muscles.

Finally, in 1999, I came out of the wheelchair and walked with arm crutches. I still used the chair or a scooter for long distances, but around the house and for short jaunts, the crutches became my support. I even took a trip to Israel – the fulfillment of a lifelong dream!

But I digress. I really missed nursing and working at the VA was nice, but not really fulfilling. So I was talking with a friend one day who thought I had a great sense of humor. She introduced me to a friend of hers who publishes a magazine just for the disabled community. After talking a few times, we decided I would try writing a humor column about living with a disability. So “On These Wheels” was born. The first column was written in 1998, and today I submitted my last column (the magazine has been sold).

I began to realize that here really is healing in humorWriting about my experiences as a disabled person gave me the ability to laugh at myself, and help others to laugh also. That sense of humor made it easier when people would stare at me when I fell. I would simply look up and say something like, “Hi! Did you know there’s a crack in this sidewalk – and I just found it?!!” Laughing when you have fallen and truly “can’t get up” is never easy, but it keeps you from getting depressed about your situation.

Once I began to do that, I began to realize that there really is healing in humor. Readers began to call the office and say they were laughing at things that they never before thought as funny, and doctors’ offices and one medical school would call asking for copies to give their patients and students. For the first time in years, I felt like I had found a new lease on life.

Of course, there was the normal day-to-day living to contend with, and I have lived alone since my divorce in 1979; and I didn’t want a live-in helper either. That meant learning initially how to do things while in a wheelchair in a non-wheelchair apartment – t’wasn’t easy!!!

My children say the word “stubborn” doesn’t even begin to define my determination. I wouldn’t let anyone help me do anything for a long while. If I couldn’t do it, it didn’t get done. Finally, my friend, the therapist, convinced me to let her come to my house and see what I needed help with. Together we either found aides to make things easier (like knives with fat handles or a board to help me slide from the wheelchair onto the bed). Then we worked on things like making a bed or running the vacuum. I believe re-learning to do what I had been doing for years was the hardest thing of all.

I became determined to get better. Once on the crutches, I still exercised my leg muscles to get stronger. Finally, after a couple of years, I was able to walk around the house by holding onto furniture or walls and counters. I got brave at times and would walk a couple of steps without holding onto anything. Sometimes I made it, sometimes I would fall or nearly fall. But I kept “practicing”; after all, babies don’t walk without falling the first few times either!

I still had spasms in my legs and after a few years, my arm muscles and even chest and back muscles at times, would spasm. It seemed the disease was getting worse.

It was one of the rarest forms of that diseaseI was sent to a neurologist who specialized in rare neuromuscular diseases. After an EMG (muscle test) and muscle biopsies and other tests, it was determined I had the CIDP, and after taking a detailed history including that of my family (and of course, my daughters), she informed me that it was one of the rarest forms of that disease, and is not curable. Only the symptoms (like the spasms) can be treated. She said my form was very much like having Multiple Sclerosis in the sense that there would be remissions and exasperations (gets better and worse); and if I went into remission, to enjoy it while it lasted.

Finally! The disease had a name. Then I found out most people only know about the mild form of the disease and demanded to know why I was on crutches and not walking without them! OY!!!! Talk about frustration!!! Having to explain to others made me wonder why no one knew about the rarer side of the disease. So I investigated and found that there are so few patients with the rarer form, that there is no research being done. So, like MS many years ago, those of us with this form of CIDP sit alone with few sympathizers.

I have little self-pity. I refuse to pity myself. I never allowed others to treat me with pity either. Perhaps that is why I have done so well with my disability. I continued to exercise; going to the gym and working out on a balance ball (with a trainer who volunteered to help) and on weight machines. I even dragged myself onto a bicycle there and painfully pushed and pulled on those pedals until I make the wheel go ’round! I didn’t perspire, I sweated – bullets of sweat! I would leave that gym on my crutches looking like I jumped into the pool fully clothed. I went back three days a week for some four years. I never stopped.

I bought a house in Texas (where I’m at now) and began to take a one mile walk every day, crutches and all. Somewhere around October of 2006, I noticed my balance was better and my legs didn’t hurt quite as much. I started walking with a cane for short distances, and used the crutches for the walks. Finally, in April, I went to the cane full time!

The legs were hurting less, and my arms were feeling better as well. By June, the majority of my symptoms were gone or fading fast. I was in full remission, Thank G‑d!!! I drove my car to Pennsylvania at the end of June and drove back in July with my grandson.

I am still in remission, but my legs are beginning to hurt a bit again, and the spasms have returned. But I am not going to weep if this old disease returns. I have enjoyed my freedom, and look forward to another remission, should I be so blessed. So far, I have not had to return to my cane or crutches. It takes me longer to walk my mile, and I tire a lot easier, but I am determined.

I have not had to return to my cane or crutchesG‑d has been good to me. I have had great doctors, wonderful friends, and lots of fun. I truly believe we are not given more than we can handle in this life. Rather, G‑d entrusts us with these obstacles so we can learn to overcome them and help others. Overcoming, I have discovered, does not necessarily mean getting well, but means making the most of it; doing your best and not losing faith.

I believe I have helped others through my humor column and by example. One thing definitely got better though, my faith. It is stronger and I am more determined to keep learning more. After all, if I can make it through this disease, I can do anything, G‑d willing.

2 Comments Posted

Center

OK,
I’m sorry. I know his message is, overall, a good one. But where did he get the idea that CIDP is usually a “slightly aggravating” disease????!!!

Caryn

Wait till he has dealt with CIDP for 23 years as I have. i wonder if it will be slightly aggravating.

Ron:confused: 😡 🙁

This Person has No Idea at all. I only wish I had it as bad as his

I agree. Obviously has CIDP much less severely than a lot of people on here.

You gotta be rock bottom, completeley dependant on other people, maybe bedbound to really appreciate what CIDP can do to a person.

Neuromuscular disease? After reading through this a few times, it doesn’t even sound like CIDP to me. Genetic? What kind of testing did he even have; never mentions anything about a spinal tap or NCS, hmmm. Sorry to sound so pessimistic about this article, but I know of no one (other than perhaps a child) who can spend that much time in a wheelchair & then get back to running miles every day. I wish I had his doctor!

Humor and faith can help. This can be even be true when the situation is vary far from humorous. However, there are some who are in a far more serious condition than individual who wrote the article. Even in these situations faith can offer comfort. Someone with faith can look to the future and say this can not last forever, it can only last as long as I am here on earth. The best is yest to come. This is not easy, that’s why it is called faith.

It is faith and humor that keeps us going! Having someone to lean on and being able to laugh at ourselves, otherwise the disease would have us down and out. Lately the medical tests and bills with no answers was enough to drive a strong person to dispair,{thank God for the two weeks in Nevada}, having my friends to remind me that this too shall pass, that you have to put faith in God and being able to laugh at all the ackward moments is what is carrying me through. None of us have an easy road, no matter what stage of the game we’re at.