Asking for Help with Secondary Progressive MS
I have a hard time asking for help.
Even when it’s offered, my knee-jerk reaction is to decline. Only in desperation do I reach out for, or accept, much-needed assistance. I say I am OK more often than I am. I do things myself more than I should.
I never used to need to feel independent. Now, I search for evidence of its existence. I dislike needing help with a task I could once do myself. I try in vain until pain, numbness, or both force me to stop.
But I am learning.
I am learning that asking for help does not equate to weakness. Quite the contrary. Trusting others with our vulnerabilities inspires strength in mutual relationships. People who care for us want to make our lives easier. It has taken me a long time to differentiate between that and pity. My fear was the only thing to pity.
Living with a painfully progressive and chronic illness is a challenge. Much like any trial in life, we need support when things get tough. And they will get tough. Our well-being is worth any help necessary. Our physical and emotional health depends on our ability to self-advocate.
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Since my diagnosis, I have been fighting a self-imposed stigma. I fear being thought of as weak or needy. The reality is that at times, I am both. My emotions run the gamut in tandem with the physical manifestations of MS. This is a time to be gentle with yourself. Give yourself permission to ask for what you need. Allow for latitude and choose to be around people who afford you the same.
It takes tremendous courage to ask another for help. To be quiet is far easier. There is nothing enlightening about silence. Let yourself be heard. Anything less and you are cheating yourself. Anything less and you are cheating others from witnessing you. Stop assuming you are not to be heard and speak. Ask. Cry. Yell.
Be heard. You are worth every syllable.
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Comments
Gwendolyn Elissalde Mugliston, PhD, DVM, MSN
I am having a problem with my secondary progressive MS in that I do not have the money to buy what I need. I had never even heard of secondary progressive until I went to the neurologist who oversees my care and told him I was having a real problem walking. I had been using ski stix to walk. Initially I was given walker "thingy" that I stuck out in front of me and then I lifted my arms and it walked into it with my arms supporting me. I am just now 5'2" tall (used to be 5'5") and I, being too short, have no leverage with the "walker" so it is exhausting to use.
He then gave me Ampyra (dalfampridine) and it allows me walk at the bid dose every hour I am awake. That was when I heard him say progressive MS. I, too, don't know what to do with this problem.
I have pain at one level or another 24/7, fuzzy/blurry vision and am so incoordianted it is no longer funny.
Where is the end point? I cannot move from where I live and I have no disability funds since I live on my SS of $1450/mos. The town where I live is at minimum 25 miles from the nearest hospital; the neurologist is 85 or 90 miles away. Even grocery stores are 20 miles away.
I know there are others in the same spot as I am not uniquely isolated. What do they do? What can I do? My fatigue is often "overwhelming". And there are no sidewalks here though the road is paved.
Thank you for any answers and/or ideas.
Melissa Vemi
This last end of the year I came to the conclusion that the neurologist I saw at the beginning of the year was spot-on and I was going into secondary progressive MS. Are so staunchly refused to go there when she said those words. I lived in the land of denial six months or more. but realizing that things were not getting better and that I was staying the same with the drugs and no new activity for a number of years that I was secondary progressive now next Thursday Valentine's day will be 26 years since I was officially diagnosed with this disease as relapsing-remitting. Sock was in 1990 but that only lasted 6 weeks and then I was normal for 6 years. Still having a hard time wrapping my head around this but I'm asking God to give me the strength to be able to allow people to help me and to ask for help
Fiona
I'm secondary progressive and also prefer to remain silent than ask for help! I still struggle myself to digest what I have, so keeping silent is where I am. My limp or imbalanced unsteady walking is just old age! Or that's what I say. If you can ask for help, do it! I'm just not there yet.
Greg tully
I agree
Susannah
That was beautiful and really touched me, so much so that this will help me build up the courage to ask for help. I can relate and thank you for sharing your thoughts
Houndofculaine
Only problem being its cost. I saw my neurologist last month and asked about this as spasms are probably my biggest issue. In December I had a spasm that nearly tore my hip joint apart. And the answer, Yeah they'll prescribe it, but privately at a cost of £650 per month!
So much for all the press coverage about people with MS being given medical marijuana. Only I'd they could afford a second mortgage!!!!
Marianne Chase
I have always had body spasms and nothing worked until I was given Baclofen. It is inexpensive too. It stops the spasms although it does not always stop the muscle pain that goes with the spasms. I keep six ice packs in my freezer to be used on the muscle pains. If the pain reaches my neck I always get a very painful migraine that lasts for days! The ice packs wrapped in a thin tea/hand towel placed right on the muscle pains helps so much...
MICHAEL
TRY GABAPENTIN IT WORKS FOR ME AND I AM 72
Kevin Keplinger
The most effective treatment that there is for secondary progressive MS, & all forms of MS is HSCT.
Steve
Accepting help is hard at first. I am a 62 year old man that never used to accept help. I now let people hold doors for me. We need help so I figured take it. I think a simple thank you and smile makes everyone feel better. Obviously we need the help. I fell at a rest area and hit my head hard. People rushed to help. My wife got out of car and said I had MS just let me take it slow. She got the wheelchair out and I was helped into it. One guy wheeled me into and out of restroom and back to car. Very grateful. Another lady went into store and got ice for my head. Nice people. I left with a smile. All were happy.
Matt Cohen
I'm right there with ya. I hate doing it. I equate it with a concession to letting it beat me. But its not about that, you're right, and I know this. But I don't think I'll ever not be like that. What makes me feel like I beat it is when I ask before I need it. Thus a strategic win of sorts.
Alethea Kluverwilliams
I was told by my neurologist that I was SPMS. Didn't let that stop me from changing my diet and feeling much better! I tested it this week, ate Burger King...tingling and weakness came back whole left side. You have to change your diet for quality of life.. Paleo...I have terrible spasms and have not had to be hospitalized for almost 2 years now.
Cyn Doyle
I don't ask for help because I don't want to bother anyone. But if someone offers...I take the help and say ''thank you''. Many people say ''if you need anything , just let me know''....but for those who REALLY want to help...saying ''do you need a drive today ?...or ''I am going for groceries in an hour...do you want to go ? ...or...''can I pick anything up for you while I'm out ?'' This makes me feel that they WANT to do it...and that I am not bothering them.
I have a friend who calls every day to ask if I need a drive anywhere...and it makes me feel as if I am doing him a favour !
However...I still can't ASK for help.
Tilda Kruegel
I was diagnosed with SPMS in 2015, after only nine years of late dx'd with RRMS in 2006, a year later 2016 I graduated from a walker to a motorized wheelchair, although I still use my walker/transporter converter in my 1958, but my husband made me a beautiful roll in shower in our newer bathroom! Anyway, after only not quite eight years on Copaxone that I was taken off of last April I had what we thought was an exacerbation in November 2018, and went through an additional three days of Solumedrol but only 500 mg. due to my diabetic reaction only then, not a diabetic, anyway this time not for ON as were my last six, this time for Nystagmus and essential tremor nasty! Of course it had little to no effect, told it was my current reaction to my 1800 mg. of Gabapentin that I have been on for nearly a decade at different mg. and tapered last June to one hundred 2X a day and then none at all, so by the fall when being seen by a pain center doctor, my pain level was severe I also have spinal stenosis at all levels I was given the prescription for 600 mg. 3X a day when off it for all those months, the conclusion seemed correct. So once again I tapered all away down to 100mg 2X and then my neurologist felt that my pain was from the MS and put me back on 900mg. daily (3) 300mg. That I am now, PS even on 200 mg. the Nystagmus and tremor did not go away, she mentioned damage to my cerebellum, lesions causing the problem and of course they do not go away. I have paresthesia in my seven injection sites that were thought to be caused by Ampyra so after two months I was taken off of it, later blamed on my Copaxone that was back in 2015! Of course it was the SPMS then and realized in 2016 when I could not get up from a sitting position in my neuro's office! Now down my arms and to my feet, no fun! My eye sight is compromised and I do see a neuro-ophthalmologist every year for that, my vision has diminished slightly in both eyes as per optic nerve exam last July, due back this. The problem is my age I will 69 in July and the FDA does not believe there is no difference in MS patients with MS morbidity by age 70 for any DMARDs, so I opted for a clinical trial on anything but now I have CKD, kidney disease that fluctuates from 70 GFR to 32 to 50s to back to 70, so disqualified! Any ideas?
Marianne Chase
In the early part of 2018, I was notified by our local Chapter of the Nat'l M.S. Society, that they had volunteers to help people with M.S. do things they no longer could do. Mowing lawns, doing laundry, vacuum/dust the upstairs, help with errands and doctor appts. etc. I never followed up with it because I have been shamed by my immediate family for "getting M.S.". I am estranged from my family now, which has allowed my blood pressure to return to normal, but my spouse has taken up their anthem. Our relationship is nonexistant except when neccessary. I wish I had accepted the help when it was offered so that I could have been in a better place than the hell I'm in now 24/7. None of us who have M.S. asked for it or were happy to be diagnosed with it. I don't understand how I went from being a good person to a defiled person in the eyes of the people I have known and loved all or most of my life. So I ask you to do what I didn't do and call your Nat'l M.S. Society Chapter or their main office and ask if they have a volunteer list that can help you get the chores and errands done that you used to be able to do yourself.