Sick and Self-absorbed

 

Sometimes I get lost in the many thoughts about my never-ending health issues.  Serious sickness softened my focus on family and concern for others.  All I could see was the diminished person staring at me from the mirror.  My many years of MS had mixed with cancer, a potentially lethal blood clot in my lungs and a host of less dramatic ailments to energize the obsession with self.

My frequent falls brought matters to a head.  Usually they come upstairs in our house.  I do not fall like a tree slamming to the ground.  I crumple as my legs falter and fail to hold me up.  There is no warning signal.  My descent to the floor is sudden and slow.  It cannot be stopped.  So begins the larger problem of figuring a way to return to my feet.    I cannot simply stand.  MS took that away long ago.

Positioning my right leg to do what I ask is an impossibly.  I have not learned the art of standing up using only one leg.  I have to crawl to a piece of heavy furniture, a bed or sturdy chair.  Even then, sometimes I am unable to pull off the maneuver.  If Meredith is around, she tries to help, but she is small and I am tall, not a good recipe for teamwork.  One time, she hurt her back and announced emotionally that she cannot do this anymore.

She had to call the police another time when she gave up getting me upright.  We live in a small village outside New York, and two officers arrived within minutes.  I was back on my feet in less time than that.  They were gracious.  Meredith was extremely frustrated.  “We can’t live this way,” she said emotionally.  Her words fell on deaf ears.

I fell one time too many.  Meredith wanted to call the police.  I shouted, no, insisting I would get myself up and all but banishing her from the room.  I was more concerned about bothering the police than with what I was doing to my wife.  It took more than an hour for me to pull myself up three stairs toward her office so I could use the metal railing to pull my weight up enough to stand.

That was it.  Meredith was adamant that we had to do something.  I rejected her ideas.    She turned to me angrily and told me she was done, that I was not to ask her to do anything for me.  She added that our friends thought I was I was selfish.  Then she left the house.  I sat in silence.  It was a sobering moment.  I thought hard about how much Meredith does for me and how ungrateful I must seem, responding to my emotional agenda and ignoring hers.

Rude is a word that comes to mind.  I sat down at the computer and consulted Dr. Google to choose a company that sells pendants with a button to notify them when there is any kind of medical emergency.  I figured they would then notify the police.

The next move was to contact the local constabulary.  They were terrific, telling me they go to people’s homes regularly to assist residents in need.  They suggested I give them a key to the front door in case Meredith is away and I have made one of my visits to the floor.  They put me at ease.

Self-absorption when are sick may be understandable, but it hardly is acceptable.  Illness is a family affair.  Spouses have the special burden of tending to emotional needs and practical responsibilities.  They should not be treated as spectators when they are in the ring with us.

28 Responses to Sick and Self-absorbed

  1. Patti May 31, 2014 at 2:03 pm #

    Richard,
    I hear what you are saying, after many falls, one with broken allow, my husband finally said the same thing M said. We bought a pager, a stairlift so I could go to the lower level and out to the pool and a part time aide. Talk about my independence being slowly taken along with watching my body give into the ever slow decline of Secondary Progressive Ms brought on another challenge of wrapping my mind around all of this. It does get better for myself and my best friend and husband knowing he is not in a constant state of worry when he is not hear with me in the house. It is a small part we can give back to them for everything they do for us.
    Sometimes I wander if I had a choice would I rather watch my body slowly decline after 37 years of MS or have an accident like Christopher Reeves and just deal with it from that point.

    • Richard M. Cohen June 1, 2014 at 9:10 am #

      You never will know.

      Best,
      R.

  2. MB May 31, 2014 at 4:16 pm #

    The dreaded fall—I got so sick of it happening that I got a leg brace. I wear a lot of black slacks so I had one made that was black and it works like a charm. My goal has always been to stay upright as long as possible, but since I was falling, that kind of defeated the purpose of remaining upright. Also, when my leg buckled, I had instant non-spousal support.

    At first I viewed it as MS winning the battle. Within days, my view changed to, “Take that you mother%$@%ing disease!” Ha—the war rages on, but at least I was able to chalk up a victory for my side.

    • Richard M. Cohen June 1, 2014 at 9:12 am #

      Small victories count.

      Best,
      R.

  3. Amy Corcoran-Hunt May 31, 2014 at 5:28 pm #

    At long last, I decided to sell the old Victorian two-floor condo that was my home for 18 years, and buy a single-floor home. I’m putting in some universal design in the bathroom and kitchen, so I can operate more independently. I use a wheelchair. Let’s get with the program, kid. Let’s make life simpler and happier. What was with all those stairs?

    I waited too long. Glad the spouse waited, as well. I wasn’t the only one struggling.

    • Richard M. Cohen June 1, 2014 at 9:14 am #

      All of us struggle. So do our partners. I finally stopped hiding from that.

      Peace,
      R.

  4. Kate Aquilino May 31, 2014 at 7:58 pm #

    Patti, excellent suggestions. I’ve had MS 42 years and I’m still walking. My main symptom is fatigue. Painful weariness. Have you tried eliminating gluten from diet. Vegan even better. We moved to FL from NJ and eliminated the stairs, the snow, the ice.
    Richard, the first rule of caretaking, paraphrased, is you have to take care of the caretaker (and caretaker has to take care of self, too) it’s like on the airplane. In the case of emergency, iF you are traveling with a child, put your mask on first. M is an angel but still only human.

    • Betty Moody May 31, 2014 at 9:57 pm #

      Richard said, “It took more than an hour for me to pull myself up three stairs toward her office so I could use the metal railing to pull my weight up enough to stand.”

      These challenges are all too real, and regular for many of us. In similar struggles I’ve yet to cry or blame, or give up. I just bite my lip, probably hold my breath; and leverage, and crawl or roll to what I need. When it’s over, and I’ve regained some semblance of composure and connectivity I marvel at the human spirit and my innate drive to endure. What is this force that drives us? Will it last, or how will it morph?

    • Richard M. Cohen June 1, 2014 at 9:17 am #

      Do you know about Dr. Terry Wahls, who created an MS diet that got her out of a chair? Check it out.

      R.

      • Joan L June 1, 2014 at 2:39 pm #

        I started on Wahls diet @3 years ago after seeing her TED talk. I had taken at least two of the injectables with no success so started the diet. Since I was diagnosed already secondary progressive ’03, have not taken any drugs since around 2007. There is no way to know if I am better off or not, but I lost 40 pounds which certainly helps me and others who have to get me off the floor! in March I got her book and fine tuned the diet. no miracles so far. Of course, I cannot afford an endless swimming pool or $17,000 for a neural electric muscle stimulator and buying all organic is really expensive. However, I won’t quit eating this way because I could be much worse and I am certainly much much healthier! I live alone and use my wheelchair as a crutch, haha, it acts as a grab bar, catches me when I start to fall, holds things for me and lets me get out and about! If I kvetch and no one is here…

      • Gala June 4, 2014 at 10:30 pm #

        I started Dr. Wahls diet 2 month ago, together with bunch of supplements. I was getting worse and decided to stop supplements but continue with diet. Of coarse it is still only 2 month, but if nothing change I will stop after 6 month. Will gradually bring back supplements. Will see. I was hoping HSCT would help me, but seems not. I had it year ago in Moscow

  5. Brenda Mazur May 31, 2014 at 10:55 pm #

    I love you are so honest with all you deal with, I have had it 5 years that at least when they finally said yes I really have it. I haven’t started meds because I have read so much up on them and my body usually doesn’t like meds so I am hoping I can stay away from all of them. It seems like if I have surgery or the dentist it brings on attacks.
    It is so nice to know there are real people out there who deal with this and know what we are going through. I hope you know how many people love what you are doing.

    • Kate Aquilino June 1, 2014 at 7:02 am #

      Brenda, i have managed 42 without the meds. Check out my website: muddlingthroughms dot com.

    • Richard M. Cohen June 1, 2014 at 9:19 am #

      We are in this together. We are a community. Can’t say it enough.

      Best,
      R.

  6. Tracey Turner June 1, 2014 at 12:01 am #

    Richard, please take note of the last sentence in the above paragraph. It says ” I hope you know how many people love what you are doing.”

    I’ve had MS 9 years and there is so much baggage that goes with it. So I ditto the above statement, we love what you are doing!! Don’t stop, get an assistant if you need to.

    • Richard M. Cohen June 1, 2014 at 9:21 am #

      I would not know what to do with an assistant. I can make my own peanut butter sandwich.

      Best,
      R.

  7. Robin June 1, 2014 at 11:09 am #

    I read this, and the responses. I can identify with this, after 16 years with MS and countless medications – none of which worked worth anything, I am in a powerchair these days. Yes I live in a 1 floor home, and the chair has provided me with the freedom to get from point a to point b safely, quickly and without falling, getting hurt or hurting anyone (mostly! there are a few toes that have suffered LOL). I hate it, every second of every day but I am a realist and I do realize and grudgingly accept that I need it.

    Can identify with your psoriasis issues, guttate is a word, so is full body coverage-just started stelara injections and it helps. There aren’t many MS’ers with psoriasis, wonder why that is.

    USE the tools that are out there to help you, MS is a family burden, dont make it harder on the ones who love you than it needs to be. Yes I have an aide too, it does take getting used to but once you find the right person, they are really helpful. Please dont feel ashamed of needing it – its a battle all of us have. That and not wanting to lose our independence, but MS is a cruel disease, it doesn’t give a crap and takes it anyway.

    keep writing… 🙂

    • Richard M. Cohen June 1, 2014 at 3:58 pm #

      I am not ashamed because I learn by living this disease. I am an imperfect person with a worthless condition. I am past anger, justlooking to catch a break.

      Best,
      R.

  8. Robin June 1, 2014 at 11:16 am #

    and ps. yes I do have a partner, he does the best he can to help, and works full-time too. It’s a burden on everyone… try to focus on the positives, which is hard to do some days I know!

  9. Kate Aquilino June 2, 2014 at 8:30 am #

    I’ll take your assistant, Richard. I’ve been keeping mental track of all the things I would have for that person to do. Starting with keeping up with facebook and doing all those things that young people do and I, an old fart, don’t know how to do. I posted a link to Sick and Self-absorbed on my blog. website: muddlingthroughms dot com

    • Richard June 2, 2014 at 7:44 pm #

      I am Facebook challenged.

      R.

  10. Theresa June 2, 2014 at 3:11 pm #

    Hi Richard,

    My husband was diagnosed with PPMS in 1997. His symptoms are only on his left side. Your post hit home because my husband has been falling a lot lately. He only bought a cane about 2 years ago (after I told him that I was tired of being his cane all of the time). And now we’re trying to figure out what to do about the falling. I can understand Meredith’s point of view. I want to help my husband as much as I can, but there are some things we cannot do, and probably should not do if we can get someone trained to do it. Plus, I think it’s important for me to maintain some sort of identity as a wife/partner, not only as a caregiver, for the strength of our marriage and the family. We try to teach the kids the little extras that dad needs, like help dishing up at the table, etc. (ie, a family affair, as you say). But we’re not sure how to move on as the disability progresses, so I am learning with your posts.

    • Richard June 2, 2014 at 7:47 pm #

      It is tough and complicated. I hope you keep at it. And prosper.

      Best,
      R.

  11. Linda Lazarus June 3, 2014 at 2:53 pm #

    My frequent falls brought matters to a head. Usually they come upstairs in our house. I do not fall like a tree slamming to the ground. I crumple as my legs falter and fail to hold me up. There is no warning signal. My descent to the floor is sudden and slow. It cannot be stopped. So begins the larger problem of figuring a way to return to my feet. I cannot simply stand. MS took that away long ago.

    Hello,
    I still forget that I can not simply stand up!
    We are organic farmers on a small farm is western MA. I do a lot of farming while crawling my farm. We often joke that I am a great worker because once I am down I can not get up without something sturdy to pull myself up on and my husband says he won’t be there to help until I haven finished the row!

    At the wonderful Northampton farmers’ market I often forget this need as I kneel down to play with the many dog friends who come to visit. Then I have to crawl back to my truck to pull myself up. It must be quite a sight. Still, I am happy to still be able to adapt, to crawl and to pull myself up. Soon enough those skills will serve me well as snow, sugar snap and shell peas are all in blossom!

  12. Melanie June 3, 2014 at 9:47 pm #

    Oh, thank you so much for this post! My husband (who reads your blog and comments frequently!) has MS and we have always tackled MS as a family affair. While one of us has the physical symptoms – we both have to deal with all the chaos and emotional pain left in its wake. I know I’m not the sick one, but I can say with confidence MS has changed every single thing about my life. Did I choose it because I decided to marry this man knowing he had MS? I don’t think so – I was already in love with him and his MS diagnosis happened to us both. I wouldn’t have chosen MS – but it was the card we were dealt and it’s the challenge we have to overcome every single day. Walking away is not an option simply because I physically can. I LOVE hearing stories you share about Meredith and the relationship you have built. You are a couple I look to – neither of you sugar coat the reality that MS sucks. It is clear you love each other deeply. Whenever I see you together and she’s picking on you and your cracking jokes – I see my husband and I. Your coping mechanisms are so very similar to ours. This post in particular really compelled me to respond. I can’t count the number of times I’ve been in Meredith’s shoes – shouting “I’m done!” or “We can’t do this anymore!” If Meredith is like me (as she appears to be), she then deals with the guilt resulting from the outburst, feeling horrible for saying something so hurtful – as if you are choosing to fall / be sick. It’s a vicious cycle. I see so much of us in you both – I have a career and work hard at balancing raising our child, taking care of him and still trying to get ahead at work – often I feel I’m not doing any of these things very well. I always imagine that even Meredith – an amazing and successful woman – feels this way too – and it gets me through the tough days. I guess the whole point of this very long post is to thank you – and thank Meredith – for continuing to share your life with MS. I am truly grateful to hear your stories – it makes me feel like we aren’t alone – like we are in this battle together and there are people out there that are similar to us, fighting this fight every single day – who would understand if I drove off in a huff after he falls and not judge me for doing it to “my poor sick husband”. If Meredith ever decides to do her own blog as the “well-spouse”, I will be her biggest cheerleader and I’d be happy to share experiences on every topic she covers! Keep fighting the fight. Keep sharing your thoughts. I can’t tell you enough how helpful your words and your “real” mean to me and my husband. Thank you for taking the time to read this.

  13. Yvonne June 9, 2014 at 9:31 am #

    Your blogs are so detailed and honest about this disease. I hope you know how much this blog helps give a voice to our common struggles. After a particularly brutal week of falling, I was getting extremely frustrated and cut off contact because I was irrationally angry with friends calling to invite me to things I couldn’t possibly attend because My knees were bruised, my back hurt endlessly. I had to ask a friend for the “gag” walker the friend got for a turning 50 party 10 yrs ago complete with bells, horns and whistles attached. Since my job had transferred me many didn’t know about my MS diagnosis. I was walking everywhere back then without problems so I was still incognito to most. Today I am using the walker daily to prevent falling. I kept the bells etc to add some levity as I shuffle around the house because I am embarrassed to have to use it which means I need more work before taking it outside. The adjustment to falling with the inability to get up without help, the cane and now the walker. Thank you so much for journaling so honestly. This MS journey is a bitch. Sunshine and roses are not always available and are not what is needed. Sometimes just being able to reach the arm of a chair or ottoman can make my day.

  14. Laurie June 9, 2014 at 9:33 pm #

    Richard,

    A Firefighter suggested a door lock with a keypad code. That way we can give the code to police, fire, and the people we trust.

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