How am I? Ask the Octopus

The day to day reality of multiple sclerosis can be just about impossible to explain. If, 10 years ago, I was paralyzed in a diving accident by now I would know with certainty what my body could do. If, 10 years ago, I had cancer by now I would either be a fond memory or joyously cancer free.

Having MS is a little like trying to keep a live octopus inside of a plastic grocery bag. Every time you slide one part back under wraps, another part sneaks out. And, somehow you have to find a way to live with this unwieldy, unpredictable, and rather inexplicable creature.

Symptoms and abilities change from moment to moment. If, for example, this morning my right hand seems strong enough to hold the coffee cup—should I still use a drinking straw? Will the first, fourth, or ninth sip be the one where my fingers give way and the coffee splashes across my lap? Friends stop by and I chat and laugh and seem to be my normal self. Should I tell them that my right eye has developed a disturbing blurriness and I can barely breathe for fear of going blind? Did they know that my pain is off the chart and, with my cognitive challenges, I have trouble following the conversation?

I yearn to be normal. The ever changing landscape of my MS and how it manifests in my body makes ‘normal’ indefinable. About three years ago I developed a chronic cough and shortness of breath (not your run of the mill-top of the 100 most common MS symptoms list). A pulmonologist ruled out asthma, allergies, and a host of other things and finally said I have laryngeal spasm. This is a paralysis of my vocal chords—he then blithely mentioned that at any time my throat could close up and I wouldn’t be able to breathe. Also, that I would intermittently experience trouble swallowing and needed to guard against choking. No treatment, no predictable course, just more MS uncertainty. Thank you and have a nice day. At random moments his words echo around in my head—wondering if this is the meal where I will choke, is this the cough that indicates the worst is here. And this symptom is just one of countless in my body.

So, how do I know what to say when I am asked, “How are you doing.” I don’t have an answer. I wonder, compared to what or when exactly—10 years ago or last week or the past five minutes. And I haven’t even addressed that I don’t know with any kind of assurance what the next five minutes, week, or a 10 years will hold.

The one thing that sustains me is the unchanging presence of God in my life. The one way I can quiet the fear and uncertainty is to dip my feet in the river of His presence that runs through my life. At the top of this blog I have a scripture quote that says, “He does not take pleasure in the legs of man” as a reminder that I am not defined by my physical body.

So I will continue to wrestle with keeping the octopus in the bag. How am I? Hanging on with my finger and toe nails. So for today, that is enough.

Happy Happy Joy Joy

Finally! Help for MS Head Pain

For over a month I have had steadily worsening, nothing short of hideous pain on the right side of my head.
Yesterday, after a desperate trip to my pain doctor, I finally had a diagnosis and a 'fix' that worked!
I have Occipital Neuralgia (description) and there is actually a treatment for it. The doc gave me a whopping big shot of cortizone in the area of this nerve (back of my head) and over the past 24 hours my severe pain is slowly subsiding. In terms of the old pain scale my numbers have gone from a continuous 7-8 with stabbing off the scale electrical shocks to about a 4-5 this morning. And, no electrical shocks since I had the shot.
Who would have thought how good it feels to be back to a manageable level of pain! {I am using lots of exclamation points this morning and feel that I have earned every one!} As the muscular tension eases my back, neck and shoulders are popping. I actually feel up to doing a few things--like walking my dog (maybe) or watching a movie or updating my blog.
There is an 80s song, by Madonna of all people, with the lyrics, "I made it through the wilderness, yeah I made it through." I think I will claim this as my phrase of the day.
The doc said that this shot isn't a permanent fix and I may have to go back periodically when symptoms reoccur. Just the fact that I am more than willing to have a large needle inserted into my scalp is a pretty good indicator of how much pain this condition causes.
With progressive MS I have steeled myself to not expect restorative treatments. More in the realm of palliative care that helps me deal with the day to day. I happily embrace this 'first' and at the same time am wary of the small ray of hope I feel. After nine years of steadily worsening symptoms I am dubious of this success. But, on this sunny morning with my pain at a manageable level--I am just going to enjoy it!!!!!!!!!

It is Finally Spring: Shouldn't I Be Happy?

Pray that your loneliness may spur you into finding something to live for, great enough to die for. — Dag Hammarskjld

It is early, my hubby is off to work and I am sitting in my adjustable bed with my dog curled up next to me. The sun is peeping through the blinds and birds are chirping right outside. Rather a Hallmark moment--as usual these days my experience is quite different. This is the fifth week of moderate to severe nerve pain in my head--I also have intense sound and light sensitivity--the sunlight is irritating my eyes and the bird song feels like tiny beaks pecking at my head. I haven't been out of the house in days. So, I am having trouble being excited about the change of season. I think I am becoming a troll--preferring the dark and cold world of winter to the relentless cheeriness of spring or the biting heat of summer.
I struggle constantly with envy and jealousy. Spring no longer means digging in the cold dirt and ripping out the winter weeds. Spring no longer means the first long strolls into the reborn countryside. This year, it didn't even mean celebrating Easter with my much loved church family. I was in too much pain to venture out for this most wonderful of days.
The ridiculous thing is that the level of pain, and noise and light intolerance make it just about impossible for me to be around other people. So, I am bored and lonely but quickly become overwhelmed whenever I interact with others.
A fellow MSer suggested my pain symptoms could be some type of neuralgia. This is nerve pain usually associated with the face--but can occur seemingly anywhere on the head. While it is nice to know what is likely at the root of this relentless pain--it is disheartening to read that neuralgic pain is pretty much untreatable and incurable. The main med that is suggested I am already taking. My neurologist isnt convinced that pain is associated with MS (no, I am not making that up) and his suggestion when I called was for me to take ibuprofen. So, I am once again dealing with an all encompassing, life interrupting symptom without any support or help from a neurologist. I remain convinced that all neurologists should have to experience MS symptoms for one week-like the pregnancy empathy bellies--a neoprene suit that causes intermittent weakness, stabbing pain, and mental fatigue and fogginess--to make it really realistic they should have to live on my income and take over managing my medical bills.
I claim and know the comforting presence of God--He is here in my darkest hours. The oft quoted 23rd Psalm "I shall fear no evil for Thou art with me..." floats through my thoughts. I can't let myself think that this neuralgic pain will never end--or that the sound of Spring birds will drive me mad--or that my response to a sunny day will always be a growl and a glare.
I choose a life lived as fully as I can. For now, I will put on my sound nullifying head phones and my dark glasses and listen to quiet music.

MS Society rant: Just have to get this off my chest

The National MS Society tries so hard to put a positive spin on MS and it just about makes me crazy. I just saw their latest video with vibrant folks biking to frenetic music with the lyrics 'I like to move it, move it"
For those of us who've permanently lost mobility this should be, "I'd like to move it"
Maybe the MS Society could serve the sicker members of the community more publicly if they started using a disclaimer or warning on any images that portray realistically what life is like with advancing MS. I envision the following commercial:
First, a text block that reads "The following ad contains images of life with MS that may be disturbing to those who only want to see MS in a positive, uplifting manner. And those who would like to ignore the world of the many MSers whose lives are profoundly impacted by the disease" Then some type of quiet music, with the lyrics, "I would like to move it, move it." And a close up shot of my shaking left hand trying to hold a pencil. Scanning to me slide transferring to my wheelchair and then to the toilet and illustrating how hard it is to pull down your pants when your leaky bladder is full and your hands and arms don't work too well. Then pan to an outside shot of me rolling through my neighborhood for a round the block dog walk. Closing with the 2-hour nap that the 10 minutes outdoors costs me.
Yeah, life with MS can be bike riding, glowing, shangri la. But, the MS Society needs to show the 'darker side of MS too!

Coffee filters, Lightening and Gratitude

I've had a headache since about March 11th--not the birthday present I was expecting. I use the word headache because MS symptoms are too inexplicable to translate into one or two word phrases that others can understand and empathize with. Actually, my head doesn't hurt--the pain is contained in one area, it is electrical and alive much as a summer thunderstorm. If you flattened a #4, no make that a #2, coffee filter on top of your head, and then drew an imaginary line down the middle leaving only the right half, like a weather forecaster, the boundaries of the storm are defined. All of the time it feels like an electrical current is pulsing in this region. Randomly, lightening strikes and a deep stabbing pain comes out of nowhere. Last night was a particular low point, about 2am I was wrenched from sleep by a flash of pain so intense that I unknowingly grabbed and woke my husband. He was unable to sleep for the rest of the night--I can imagine the adrenaline of being awoken this way and his concern for me were the cause.
I am sharing this to demonstrate the complexities of MS and the challenge of understanding and living with both odd and unrelenting symptoms. At any moment, this storm can and I hope will pass. It is the not knowing; the oddity; the sporadic nature; and changeableness of symptoms that makes MS so difficult to live with. Will my 'headache' fade by lunch time, next month or is it here to stay?
I say this, fully acknowledging the impact of MS on my life--sometimes the hardest thing to live with is seeing the toll it takes on my husband. He is a doll and says he wouldn't be anywhere but here taking care of me, working, and managing our lives. But, neither of us chose this life. I am so grateful that in the seeming randomness of college dating--I managed to find a man who stands by me through it all. This morning he made my breakfast, helped me get settled for the day, picked up the living room, and headed off to his demanding job without complaint. All on about four hours of sleep. I have the day to recuperate and nap--he will spend his day in the complex world of statistics and Excel formulas. Tonight, he will come home, cook dinner, do some laundry, care for the house and bills, and hopefully get a good nights sleep.
Unless, the thunderstorm intensifies and he is awakened in the middle of night where he will hold me, give me a head rub, and watch through the night for more lightening strikes. The next day, without complaint, he'll start another day and do it all over again.
I often say that with MS I have only two choices: live each day as best I can or jump off a bridge. I choose to live. My husband chooses to be here helping and loving me every day. For that, I can never truly express my gratitude.

I Try to Imagine......

Recently, a dear friend's 8-year old nephew was miraculously healed. After a winter of terrible lung infection, his parents were told that 1/2 his lung was necrotic and needed to be removed. A day or so before the surgery was scheduled, a final CT scan was ordered and not a single trace of infection or necrotic tissue was found.
For me, this is so unbelievable and unexplainable that I can only attribute it to a miracle. That is the direct intervention of God into the everyday of one child's life. Now he can try out his much loved boogie board, and go back to the play world of an eight year old boy.
What if I woke up one morning and my legs were strong and could bear my weight--if I could sit up straight and use both of my arms.Oh, to be pain free! The docs would run another spinal tap and my results would be normal. I could sell my wheelchair on Ebay and my van could be traded in for a sporty custom painted purple and white Mini Cooper. It would have a custom license plate-IMHEALD. I could go back to work and the career I loved. It is almost impossible to imagine how my day-to-day world would change. Maybe I would try boogie boarding, I just don't know.
So much in my life just is the way it is that I no longer think about the old 'normal.' How long, after my miracle, before the wonder wears off and being well becomes just ordinary. Would I forget to be thankful to feel the ocean sand under my toes? Could peeling a carrot ever seem like a mindless task?
In an odd way, I welcome multiple sclerosis because it has forced me to work through the layers of what is truly important in my life. My faith, my family, my friends remain no matter whether these hands are able to perform simple tasks. What is deeply important to me does not vary based on the MS. I have the time to savor each moment of the day and find something meaningful in it. The 'old' me, the pre-MS me kept many balls in the air and spread herself far too thin. If I were to suddenly be made well my hope would be to stay as connected with the folks in my 'village,' and not let any barriers stand in the way.