I’m Busy Doing Nothing
Everything takes so much damn time!
I’m strangely working — or at least doing things I purport as work, such as this column. That’s no different than before MS; I still have the inclination to prevaricate or find something inconsequential to ruminate over, like the state of the Turkish economy or that game of patience that’s now been going on for nine hours in computer time (probably a week in real-time).
No, it’s the everyday things. A shower and a shave take three hours, plus one hour of recovery time. That’s an entire afternoon for what used to take 15 minutes, tops.
It wears me out.
An entire day can go by in which I’m fiendishly busy, but I’ve achieved nothing but the mundane. And then I’m exhausted.
There’s no getting around it — I just have to endure. Or let my carers/family do things for me. But if I’ve stored up the energy, I’d rather get things done on my own. Like an electric car, when you have MS you have constant range (personal energy) anxiety. Instead of how far can I go, it’s how much can I get done?
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For about the last year, I’ve given up on trying to get my shoes on. I’ve also found it impossible to get my dead right leg into the stirrups of my wheelchair. (It isn’t dead, but the only time it moves up and down is when clonus, afflicts it, so it definitely has a mind of its own — or at least a self-perpetuating loop signal between the lower spine and leg.)
I have, on occasions, possessed the strength to manhandle myself into doing both with the judicious use of leg lifters. It’s rare and ultimately self-defeating — if I’m trying to go out, I really need to preserve my energy for the great outdoors.
Then, like nearly everything else that happens with this disease, I happened upon a new modus operandi. It’s deftly simple, too. I’ve taken to clambering downstairs in my compressed, stockinged feet (it helps my edema), as there’s enough friction to hold, yet also enough slip so that my feet don’t get stuck. My arms are still strong enough to hold me up. I then collapse gratefully into my wheelchair at the bottom.
What really surprised me recently was that with a bit of maneuvering, I could use the bottom step to both get on my shoes and put them into the wheelchair stirrups — with a minimal amount of energy.
The trouble is that all of our MS symptoms are different — what works for me probably won’t for you. There is the hope that continually chipping away at a problem might eventually solve it. Then MS swoops in, makes you worse, and you have to start again.
I’ve also managed to solve my epic patience game — then what do I go and do? Start again!
Sheesh.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Karen
Let me start by stating that not only is this the first forum that I am following (BIG adjustment of acknowledgement;)) I for them first time want/need to share. I was diagnosed 19 yrs ago as a vibrant entrepreneur with PPMS & told I would lose ALL mobility in 5 yrs. I fired that neurologist & chastised him for delivering sentences to people unlike me who might be as strong/confident to battle onward. I was fortunate to be in an early Copoxane study but alas there has been nothing.
Apparently @ 61 I am not able to receive the first approved PPMSM DRUG-OCERVUS. B,S. as Canada's 2nd Athena recipient- CHALLENGE, All must be tough & challenging as the writer states, push everyday! Earrings are a bitch;)
Anita
I am a 59 y/o female diagnosed with ppms 3 years ago and was experiencing symptoms 3 years prior to that. I am on no meds. Doc advised about Ocrevus but I am hesitant to take that. I am still functioning ok. My real issue is left leg weakness, left knee hyperextension. I walk with a slight limp. I don’t use a cane or walker. I just go about my day as if I don’t have it. I do all my chores, just a little slower and sometimes with a break in between. I am so grateful that I am where I am considering what it could be. I feel that doing the vacuuming, cleaning litter boxes, making beds, dusting, etc keeps me functional. I don’t want to give in. I realize the risk of not taking Ocrevus could mean more symptoms my way but there is no guarantee it would help either. I just wish there they could find a cure!
Carmela
I agree and Ocrevus may not be the cure for PPMS. I have have had it for 23 years. Started with left foot drop, ankle instability, then onto left knee hyperextension, and fatigue. Have 2 braces. 5 years ago, my left arm, hand, and shoulder started to be affected and developed more heat intolerance and weird itching on shoulder. Everything takes more time, am taking Ampyra.
Karen Reynolds
Hello Anita, My name is Karen I am 57 yrs old I was diagnosed at 42 yrs old had symptoms of numbness on my left hip all the way down to my toes. Started out taking Avonex IM injection weekly for a few years and when foot drop and weakness started on my right side my Meds changed to Rebif, I am now on Ocrevus. My symptoms have worsened. My advise to you is that
Do what I did not do. Listen to your body. Do no push yourself if you hurt. Rest if you feel you need to. Look up Dr. Terry Wahls and read her story.
Jennifer Sand Bodurtha
Hi everyone, I have had RRMS for 30 yrs. Am 57 years old and began taking copaxone. Until I ran out of spots to inject. Have been on Techfidera for several years. Was also taking vitamin supplements.
Primary Care Dr told me to stop cause my blood level was too high for Vit. D. Am going back to D since am having a relapse. RESEARCH D everyone! Am hoping for the best....
Mary K Carls
I am going on 36 years of MS. I went from an Aerobics instructor ( 13 classes a week) Three jobs ( waitressing, swim instructor, customer service) you get the picture. Now walk with a cane probably should use a walker. Fatigue is off the charts! 20 hours a week CS at a desk is almost too much. My mind is still in wonder woman mode, but the body is screaming "HELL NO!"
Cynthia King
I find doing nothing takes all day.
Tracy
Yep, takes forever to do what you used to do in no time. 10 years diagnosed. God keeps me going. You learn who your frieds are. Choose your friends wisely is what I have learned.
D
Yes, it’s been a journey. The day appears to go by quickly and yet the list of just three things are still sitting there looking at me expecting to get done. So I have given myself permission to not be superwoman. I decided if I can get one thing done-get out of bed, brush my teeth maybe take a shower put on clothing, get downstairs prepare something to eat well that is a great day.
The difficulty is helping my Husband translate that in to action...???
deb
Yes have been diagnosed 10 years ago, I want my old body back, but that's not happening so it takes a lot planning to get ready to get out of the house to go down my steps with walker, and try to have life,you just have carry on!!!
Cynthia Lynn
At the age of 36, I was hospitalized in 1996 for what was diagnosed as vestibular neuronitis. The results of the numerous lumbar puncture tests I'd been subjected to over the next eleven days were not revealed to me nor did I ask. On the eleventh day, the spinning was slow enough to focus despite the profound blurriness in both of my eyes. When I focused on an object in my hospital room I discovered my right eye had a solid black line across the middle of my vision. In a panic I asked my husband, who had just entered my hospital room, to hurry and get the doctor. "I'm going blind", I yelled!
What seemed a lifetime my husband finally returned without the doctor. My husband told me the doctor (who did not check my vision) said I was experiencing hysterical blindness. Oh, my G-d, yes, I was hysterical and blind in my right eye, but not in the sense of mentally ill. The following day, I was moved to the third floor (the mental ward of the hospital).
Living out the role in a horror movie, I grabbed by the first psych nurse that passed. "I'm not crazy, I said, please help me, there's a black line in my vision." His response was classic, "A lot of schizophrenics will experience floaters in their vision." Floaters? I thought, what the hell are those and I am not schizophrenic!
The following morning, I was called to see the psychiatrist, before he could speak, I told him my plans. "Doctor, I said, I know one day I will be released. I want you to know my plans. I will not go straight home, instead, I will be retaining a law firm to file my lawsuit against this hospital and you personally that is unless I am seen by an eye doctor immediately.
The next morning an ophthalmologist was at my bedside waking me at 8:00 a.m. after the bedside exam his diagnosis was optic neuritis in both eyes. I was released from the psychiatric ward that same day with profound blurriness in both eyes and the thick black line in my right eye that was stretched across my center vision. I was told it could take up to six months for the disease to finish it pathology and only then could it be determined what would be permanent.
Three weeks after my return home, my primary doctor called and asked that I make an appointment with the neurologist for one last lumbar puncture. I didn't ask my doctor to explain the necessity. On my next visit to my doctor of eighteen-years, he explained the relationship between optic neuritis and multiple sclerosis.
As the months passed the blurriness ceased, but I was left partially blind in my right eye by the thick black line. Three decades passed in which I lost 50 pounds, developed frequent UTIs, hypothyroidism, glaucoma, shingles and carpal tunnel syndrome. I had carpal tunnel surgery in 2016, which relived the symptoms. I did not to this day, I have not had an MIR scan
At the start of the year 2017, periodically numbness and pain occurred in both my feet when walking my two dogs. I blew it off thinking it was winter and I needed to wear thicker socks. However, when my vision became significantly blurred accompanied with double vision, I made an emergency appointment with my ophthalmologist who was adamant these symptoms were not related to my glaucoma, in fact, he said over the last four eyes there was no change to my vision. He suggested a diabetes test, consequently, the result was negative.
Then within a few months, my knee started swelling and became painful, followed by stabbing pains in my hip, shoulder pain, inflammation and numbness in both my hands and shocks on the side and heel of my right foot. The last to come, just last month, is the loss of balance. I've fallen three times in July, one this month.
Over six months ago, I stopped using the medical eye drop prescribed for glaucoma. During a scheduled appointment a few days ago, showed my optic pressures were lower than at any time after using the medicated eye drops. During this visit my optic nerves were then photographed as is done annually, the ophthalmologist replied, "no change". I asked, "Over the last five years, I have had no visual damaged or change?" "None," said the ophthalmologist who was unaware of my not using the eye drops. "Then I don't have glaucoma," I stated. "Oh. yes, you do, there's no further damage because we have it under control with the drops."
As I left the office with tears in my eyes, I questioned what is causing these symptoms and chronic pain? Am I to live in chronic pain? I asked my primary doctor for pain medication and he refused, telling me to use something over the counter. I have had bouts of severe depression and at times have been hospitalized. I refused to take anti-depressive medication and have been labeled as mentally ill.