Coming to Terms with a Loss of Independence

MultiplesSclerosis (MS) sucks. For many different reasons, it just sucks. It is that simple. No one out there is currently saying, “wow, I am so glad I was diagnosed with MS, it gave me so many awesome abilities!” unless they are exercising the sarcastic part of their brain. At the same time though, how you choose to look at your personal situation can greatly affect the quality of your life. I am a big believer in self-fulfilling prophecies; if you wake up in the morning and tell yourself it is going to be a horrible day before it even starts there is a good chance everything is going to seem terrible like life itself is moving against you. Granted, I am rarely able to wake up and tell myself, “today is going to be awesome” without MS successfully popping up and getting in the way but nonetheless I can still (usually) seem to affect my mood and how I react to these things.

That being said, there are some things in my own life with MS that I have still not learned how to deal with properly that I know (after talking to so many people about it over the years) many others are struggling with every day regardless of how long they have had MS. One of the main sources of my emotional distress is my continuous loss of my independence. People say that MS is constantly trying to take things away from us so our seemingly everlasting job is to do whatever we can to stop it from doing so (slow the process of the disease/long-term disability). But inevitably, we tend to lose a few things before deciding that it is time to do something about it; that first loss of being able to do something (anything) can be a relatively stark reality check. Like many others, I have a pretty aggressive case of MS so the last 6-7 years of my life has felt like a constant tug-of-war over my independence. Sometimes I feel like I am winning and sometimes I feel like MS is winning.

Thing is, we live in a time where most of us have access to an abundance of information. Not sure what something is? That smartphone in your pocket dwarfs the largest collection of encyclopedias, thesauruses and dictionaries you have ever seen! One minute of your time and you can do what would have taken you one hour 20 years ago! This means that finding a solution to a problem that MS may bring about is easier than ever so learning about new treatments, medications, diets, exercises, studies, alternative therapies and anything else that may improve your life with this disease is not outside the realm of possibility. On top of this, the amount of information that is out there for us to find is growing every day! So personally, a lot of my life is dedicated to learning about new ways to stop MS from taking things away from me, regaining what it has and strengthening what it hasn’t.

Even still, as I continuously experiment with new ways to possibly better my health, I will surely end up spending time trying something that either does not help or is actually counterproductive to achieving my goals (trial and error) which means MS may find the opportunity to do some damage causing me to lose the ability to do something on my own. Ever since I was a child I have tried my best to be as independent as I could and to this day I still find it difficult to ask for help. So when MS seems to be constantly trying to take my independence away it puts me in a frustratingly uncomfortable situation; having to continuously ask for help. I have come to terms with the idea that I will (for example) probably need help using power tools even though I grew up building things as a DIY guy. I can’t really do that stuff anymore and I am mostly ok with that but what I am not ok with is realizing one day that it is taking me forever to simply zip up my jacket or tie my shoes! Something that once took me a few seconds and that I have been doing all my life has now become an actual activity and as a 26-year-old male who can be extremely stubborn? There is no way I can bring myself to ask for help with things like that which means I have to learn how to deal with the stress that results from struggling to perform something that was once simple but is now a difficult and tedious activity.

One of my main methods of dealing with this stress is to take a deep breath and tell myself, “it is ok, calm down, you got this, take your time, slower is faster” which tends to be a lot less stressful than when I am fumbling with something and cursing up a storm in my head. Self-fulfilling prophecy. You can either tell yourself that you will find a way to do something or tell yourself it is impossible regardless of how simple a task you are trying to perform. Now, I am certain there are therapist out there who specialize in teaching people how to cope with the many struggles of a chronic disease but because I have yet to get myself to see one I often end up in a deep depression regarding the realization that a piece of my independence has slipped away and most the time it takes me ages to come to terms with this reality. I know this is not healthy but I have not yet come to terms with the idea that I need help with that. Stubborn pride, my double edged sword

Do you find the loss of a piece of your independence especially troublesome? If so, how do you come to terms with that loss? Have you seen/do you see a therapist? I am personally curious so please share below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (25)
  • ClumsyMumsy2
    4 months ago

    I am now in a position where I have to be the caretaker. My children are either teens or nearing their teens. You would think that would make it easier, but no. The need more watching than ever! Those of you with grown kids, I can hear you laughing.
    My husband has had Type 1 diabetes since he was 8, my son dx with the same @ 5. My hubs also in the past 16 mos has had a heartattack, home hemodialysis (now peritoneal), and two TIA’s. Therefore I managed to sneak in an exacerbation in the middle of all that (first one in 14 yrs).

    So you could argue that I don’t have a lot of independence anyway. LOL. But, yes I completely understand. Nice article, by the way. The one thing I miss the very most, DANCING. I miss putting on my music and dancing like a fool all over my house when everyone was out (MS ruined my right knee).
    I am sad you are experiencing this in your 20’s. I was diagnosed @ 34 and didn’t have my serious issues until my late 40’s. I have to pray hard to overcome my anger and resentment about it, but God blessed me with a really sick sense of humor.
    Therefore, when I get my glorified body, I will be the foolish looking idiot dancing in circles on the front lawn of Heaven one day. Look me up.

  • Matt Allen G author
    3 months ago

    I could not imagine trying to care for others when I can’t even care for myself! That takes power!

  • Jan
    4 months ago

    Nice writing, Matt. Well beyond your years, I’d say in a positive way.

    I’m starting to come to terms with my own loss of independence, but only out of necessity. I’m currently not driving (ouch). Will PT make a difference in ankle strength in a couple of months? Who knows. No one has a crystal ball. Great help from my husband and friends. But I’m used to independence.

    I was living well enough (note that “enough” word) for 13 years. Yes, thirteen. I’m highly meds-sensitive and needle averse (and angry at even the thought of it years ago when no oral meds were available). Mayo agreed with me and predicted a “benign” course–but oh, by the way, 5 years is the first prediction mark; 10 years is even better.

    So, I managed along okay enough (no DMDs ever)…until egregious MS issues hit at my 13-year mark. Tons of cumulative stress, and more this year with two deaths of relatives. Right now, the pain is incredible (feet Erythromelalgia or simply nerve damage), head pain, dry eyes, walking issues and weakness. All that, but with memories of a first full-time job skating around the country, one year sliding down a 12′ slide on skates 300+ times. And knowing of an octogenarian who still does rather nice axles. Sigh.

    I am a Christian and saw a Christian counselor years ago (when getting around was easier and health wasn’t as tough). But I will admit that I am still better at resiliency than acceptance. And I have the skinned knees to prove it. (I went out recently in humid heat on my scooter, barely made it back in the house, and melted on the floor like the Wicked Witch of the West, only to crawl to the restroom because I had zero leg strength to get up and use my rollater. Didn’t know that I was doing damage to my knees. I made it to my destination, but let’s just say that I had to do laundry anyway that day. Ahem).

    As a Christian, pride can certainly be a downfall. It doesn’t allow us to admit when we need help. Nor does it allow other willing people to gift us with their ability to help. (I’d still rather be the helper than the helpee).

    So, it’s coming down to forced acceptance but with a focus on determining the value, the true value, I can provide amidst the MS ick. The saying, “Pride comes before a fall” is rather appropriate these days. (A fall, or a slump even). I admit to just not really being where I need to be with acceptance, possibly because I want to do what I want to do and because accepting this may equate to defeat to me–not in my typical vocabulary.

    But out of necessity I may be called to a higher understanding, a higher calling of educating both myself and others around me that I am more than this disease, a scooter, or a (likely) wheelchair.

    And I want to drive again! It’s also my “me time” when I can about blast music and almost skate in my imagination as I had used to be able to do. Instead, I need to swallow my pride when I seem to be the only one who can’t make a simple walk from point A to point B without struggling or thinking about everything.

    So Matt, after all this time, I’m just not there yet with “accepting.” Maybe I just need to redefine the word.

  • Matt Allen G author
    3 months ago

    Well by “accepting” I don’t mean giving up, I mean “coming to terms” as in, “This is my situation so how will I overcome it”. I have come to terms with a lot of the things in my life but I haven’t really accepted anything because I am still fighting, fighting to get some of it back.

  • gmc
    4 months ago

    Reading these comments has helped me so much. Understanding is really impossible for most people without MS and they say hurtful things. I love hearing how many of you have worked around issues. It’s definitely time to look for motorized locomotion. Thinking about engaging a clutch is actually funny and I used to love doing it.

  • Jan
    4 months ago

    Hi gmc, I looked into a local place (nice people, but no van or lift for me). I got a SmartScoot. If you get one, please tell Pam I sent you.

  • Matt Allen G author
    3 months ago

    I find it even more hurtful when people who HAVE Multiple Sclerosis say the things they say because THEY should understand. Finding a way to work around issues is how you keep fighting and not let MS have you.

  • ldruce
    4 months ago

    I too value my independence. I am constantly searching for tools that help me remain independent and live alone. Amazon has man many tools listed – just google handicapped accessories. I found a Center for Independent Living for Handicapped People and they have given me a transport wheelchair and a rollator, among other items. I have an occupational therapist who helped me find elastic shoelaces you don’t have to tie, fat weighted pens for writing, shoe horns and a device for putting on pants. I am always reading articles and searching for new items and suggestions. There is a lot out there!

  • Julie
    1 year ago

    I’ve said it before and I’ll say it again when MS’ers say “I have MS but it doesn’t have me. I don’t believe them. If you have to give up or change one little thing in your life then MS has you. We all have to come to terms with our diagnosis and deal with it. It’s not the end of the world. Some of the best people I know I have met since being diagnosed.

    By supporting each other we can get thru this new path we are on. It’s not the way that we had planned out for our life but there’s nothing wrong with making a new path. I loved your article. It spoke to me and many others I’ve shared with. We are all in this together! Best of health to all. Julie

  • Matt Allen G author
    3 months ago

    I think you’re not really seeing the point of the statement. MS has taken SO MUCH from me, NOTHING about me is the same, nothing but one thing: I am stubborn and won’t give up in life.

    Having to make changes and adjustments in life does not mean MS “has me”, to say MS “has me” would be to say that “MS has won” and MS may have done a LOT of damage and most certainly will continue to do more but it will never make me submit, I won’t ever tap out of the fight, I’ll always keep going.

    MS may win many battles but it will never win the war because that would mean I gave up. Having to stop doing something because of MS or having to adjust HOW you do something is not giving up, it’s changing your strategy. Endgame: much like chess sometimes you have to give something up to ultimately win.

    So people can disagree with the statement “I may have MS but MS does not have me” but I stand by it, even after EVERYTHING I have been through, after all the damage MS has done, after everything MS has taken from me that I know I will never get back, I would still say, MS doesn’t have me. MS hasn’t broken me, ME, my will, no matter how many times it beats me down, I will always get back up, that’s how I know I am winning the war.

    Just because MS has taken or changed ONE little thing in your life does not mean MS has you because one little thing is not the end of the world, it’s one little thing, at least that is my humble opinion as someone who has spent a lot of time in a wheelchair, arm crutches, physical therapy, can no longer drive, stuck in nonstop vertigo, and among many other things has to often walk with a cane under the immense weight of fatigue at the age of 28. I could complain about how MS has me but I choose to fight. THAT is what people mean when they say that, they are saying they will never stop fighting.

  • Mike H
    4 months ago

    Hi Julie I don’t believe in that “I have MS but MS doesn’t have me” statement either. Easier for someone who has a less aggressive form going on & if their meds are working. If not then I’d more want to say that “MS has them”.

  • Jan
    4 months ago

    Hi Mike, I just don’t say that expression at all. There, case solved!

    I understand your points. And they remind me that to comment in the way that people do about that either is easier and can make us feel good about something but also discourage those of us who have tried whatever but struggle terribly. So, I just don’t say that.

  • JulieB
    1 year ago

    Realizing this is an old post, but I just have to say that I agree with you, Julie. I am repeatedly frustrated by articles suggesting that by changing my attitude, I can change the fact that a disease is eating my brain. I’ve lost everything from full custody of my kids (voluntarily) to my career (just as I was reaching the pinnacle) and with these things my very identity. I am a strong, formerly very independent, stubborn Irishwoman, a fighter, but MS has me. This is the reality: MS is a progressive, destructive disease with no cure. To say it doesn’t have you is simply to embrace a fallacy.

  • Jan
    4 months ago

    Jeepers, gmc, I’d toss out that GP, too. Doctors are to at a minimum extend empathy, even if they cannot relate. Push through a normal headache, a sniffle…but MS? Okay, I’ve done that for about 13 years. But it wasn’t easy–and is about impossible now.

  • Mike H
    4 months ago

    Hear you loud & clear JulieB..I agree

  • gmc
    4 months ago

    Julie and JulieB, I agree. I’ve actually had a physician suggest I just have to “push through it” – needless to say, he’s no longer my GP.

  • Matt Allen G author
    1 year ago

    I have to disagree. MS has changed so much of ME, everything really, but it does not own me, it does no HAVE me, it doesn’t DICTATE what I will do with my life, it influences it greatly but I am still in charge, I am still the one making decisions. I have the power to act or not act. So long as I am alive and still fighting MS has not won.

  • Dar210
    1 year ago

    The hardest part for me now is that family that used to be compassionate, understanding and helpful somehow think my challenges are something for me to “suck up and push through” on my own, and that to say anything to others is rude. Yes – I couldn’t believe it either! After 25 years of having caring and encouragement, it’s gone – and right when I need it more than ever. What is happening to society?

  • tfs
    2 years ago

    I am truly exploring this part of my life with help from a neuropsychiatrist, instruction from a major hospital Body/Mindfulness techniques (basically exploring thoughts and feelings and looking at the connection with the body. NOT trying to change them.) Also included is private weekly therapy, continued exploration of faith and prayer, participation in a 12 Step program which emphasized changes in self (not others.) As I read this, I see it might be a good idea to add a bit of fun in the mix LOL. Major life changes are happening though, and I need the supports.

  • Matt Allen G author
    2 years ago

    I always tell people that I AM CERTAIN I need to see a therapist, it seems to help so many people ESPECIALLY those living with a chronic disease like MS – but after 7 years or so I have yet to go… I always seem to find an excuse. Soon though, soon soon soon

  • patrice59
    2 years ago

    The loss of independence is frustrating. I am fortunate to be able to live with extremely caring family who make many things possible for me. But sometimes they ask, “What activities would you like to be involved with?” There are some, but of course they require I be driven to and picked up. It has to fit into their ever-changing, highly fluid schedule. No public transportation where I live. It’s something to figure out, but when they ask the question I sometimes want to say, “Well what fits into your schedule?”

    The other thing I sometimes deal with is that sometimes family gives me the impression I am not so smart. I make mistakes–who doesn’t? But I am highly capable. (Except with tech stuff, but that’s nothing new.) What do I do about it? Grit my teeth and stay quiet. The time to say something will present itself, but in the meantime being quiet is the best path.

    It’s funny, but my friends still regard me the same as always even though I am handicapped. I wonder why others cannot consistently do the same? Maybe because they see the day-to-day struggles that my friends don’t see. Who knows.

    Matt, you are doing a great job, no matter what your body tells you. Even people without MS have good and bad days. Hang in there and know there are people who understand and care. Keep up with whatever PT or activity you can. Use the tools, no matter how much you don’t want to. (I have a constant battle with myself on that, even as pragmatic as I am.) Keep posting.

  • Matt Allen G author
    2 years ago

    Yes, I OFTEN feel like I am a very SPECIFIC puzzle pieces trying to fit into a puzzle full of ever-changing pieces and we have many public transit options here but I have still not worked up the courage because after Lemtrada I am pretty immunocompromised so germs scare me lol…. Need to get over that…

  • jtmarcy
    2 years ago

    I feel ya, Matt. I was a DIY guy, myself. I had a pickup truck with a manual transmission, built cabinets, remodeled my house, did odd jobs for friends, etc. That was my second career plan after my degree ran out of usefulness. And at your age, I was running half marathons several times a year. Now, at 42, I can’t take a single step without my walker.

    The hardest thing for me, and the greatest lesson learned, was to give in to the disability and find tools to help. I saw it as a failure. I resisted a cane until I hurt myself falling down. I resisted the walker until, again, fell too many times. Then the wheelchair.

    One thing to realize, which was the real lesson, is that your struggles may actually hurt those around you, if you don’t address them. I couldn’t walk around the grocery store anymore, which meant my wife had to do all the shopping…until I broke down and used the motorized carts. We couldn’t go to a mall or a museum, until I bought the wheelchair. Struggling with a zipper or shoes is frustrating, but I’ve learned to ask for help when it takes too long, because sometimes you just have to get out the door before it’s too late, like getting to a job interview or an event. I can’t feel the buttons on my shirt, so I need help with the upper two or three.

    Of course, when I say “give in to the disability,” that doesn’t mean stop trying. Do the work. Find a solution. Keep fighting, but realize that right now, in this moment, you need help. I have good moments and bad, just like everyone. Sometimes tying my shoes takes just a few minutes. Other times I struggle for 15 minutes or more. If you have the time, keep struggling. If not, ask for help so those around you don’t suffer as well.

    It is a hard lesson to learn, and one I don’t think I will ever fully be okay with. But once you give in a little, life becomes easier. Save your energy for physical therapy or fun stuff.

  • Matt Allen G author
    2 years ago

    Oh man, I don’t think I could drive my old truck if my life depended on it. Working the stick and clutch? Forget it, that is just TOO MANY THINGS to think about at once! Haha… I personally try to ask for help on some things and then spend time on TRYING to do them on my own when I can but I end up getting so stressed out! It can’t be totally healthy! Some things I have just not got to the point that I am ok admitting to myself that I can’t do like zippers. I totally forgot about buttons! It’s “winter” in SoCal which means I can do the long sleeve shirt thing but I have been moving away from shirts with buttons haha… Maybe I will try one for the holidays. They do make little tools to help patients in OT button their clothes up, they work pretty well but I am in that gray area where I do not have enough trouble to need one but I have ENOUGH trouble to MAYBE need one. Ugh.

  • Mike H
    4 months ago

    Yes Matt I struggle with buttons wig one hand that’s mostly numb

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