Life – Thanks to My Caregiver

Life – Thanks to My Caregiver

I am one of the lucky ones living with chronic pain from an incurable condition called Ehlers-Danlos Syndrome. Yes, I used the word lucky, for if it weren’t for my husband, my caregiver, I would not be living with this horror with a smile when able, be alive and able to live with hope due to being surrounded by love and support.

Stu and Ellen Lenox Smith

Every day, my husband takes the beginning of the morning to perform PT that my manual PT has taught him to correct up slips, return the sacrum to the correct position and push the shoulder back into position. This provides me the opportunity for a less painful and thus, a more productive day. He carries items over five pounds for me, drives when I am too tired or dealing with the shifting of the bones, pushes the manual wheelchair at the airport, comforts me when I am discouraged and fills me with his caring and hope for a better day. The list of all he does for me goes on and on.

I am lucky to be married to a man:

  • Who still finds value in me despite all the losses I have had to face
  • That comforts me when I am sad and discouraged
  • That encourages me to live life despite the hardship
  • That not only helps me but also constantly passes kindness forward to others.
  • That spends hours and sometimes days away from home living in a motel while I recuperate in a hospital
  • That continues to take care of himself to attempt to remain healthy and productive
  • That does more than his share to keep the household running on my tougher days
  • A man that shares in the wonder and joy of our family and friends.
  • A man who will encourage me to vent to share painful emotions and thus attempting to transform a painful emotional experience into a therapeutic event. This allows me to realize that I do have the strength to continue this difficult journey with a degree of grace.
  • A man that always carries groceries and any packages that weigh over five pounds, my limit for lifting.
  • A man that loves to travel but has accepted that our life is not going to be the dreams we had anticipated to live out in retirement – going to Europe and elsewhere.
  • A man that now fights with PTSD from watching me struggle to survive catatonic episodes while awaiting a lifesaving second neck fusion
  • A man that is slowly feeling the changes of aging and is gracefully working towards the ending of his own life and legacy

When we say those marriage vows, “in sickness and health”, I am guessing for most of us, at that moment of excitement, it is just wording we repeat. The notion of caring for a partner with a chronic medical condition is, likely, the furthest thing from our minds on this special day. When one partner in a relationship must confront a life-altering illness or disability, a couple must address this challenge with the phrase “in sickness or health” uppermost in our minds. When confronted with such extreme situations, the options are stark. As a couple, you are either all in or all out. Your commitment to your relationship faces the ultimate test. Many are left in the dust when things become difficult, especially with health challenges. So many have failed marriages since the partner can’t handle the stress and disruption to the life that once was. I feel for those that aren’t lucky like me and lose their support. I truly can’t imagine how one finds the strength and courage to move on alone by yourself. For those attempting to live life with chronic medical issues alone, I commend you for your inner strength and courage. I admire you and hope that you, too, will be able to build a support system to help you. We all deserve the unconditional love, comfort, and support of others.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Rose Murphy

OMG! I daily read NPR’s excellent & informative articles from people in persistent pain. Uplifting and also seriously heart-breaking. I don’t really like the word “sufferer.” And I loathe the term “shut in” for anyone who is more or less house-bound. It is so demeaning to objectify anyone in this manner. For those of you reporting how cruell you feel that you are being treated by your ‘loved ones,’ I send you my heartfelt sorrow. The only way to respond to stupefying unkindness has to be to keep sctumm. As what can ever be the point in entering into such a downward spiral spat! When I used to run pmp groups, we would invite therapists to the groups. Some would advise us to agree with, rather than become wound-up by arguing back to their injurious bait. Agreeing with them hopefully helps deflate their angry energy, Others would advise, acknowledge: first the feeling, then the facts, then offer a solution. EG. “I hear that you are angry with me, however my disabilities are as they are, best surely that we work out how best to deal with the negative problems they cause, together. Are there not carers groups in your areas for your partners to attend? We have them, by law, in the UK. Carers are also mandated to have their needs assessed by the local social services. And/or could volunteer mediation counsellors do a home visit? Far better for stressed carers to blow off steam at a carers group than at home! Or, by possibly drinking/smoking etc too much. My marriage broke up from the strain of both of us trying to adapt to our newly intolerable situation following my work-related accident. In isolation. After I was fortunate to attend the first Pain Management Programme in the UK, in 1988, that led to my starting local PMP groups. We cannot possibly manage so many overwhelming issues associated with our varying disabilities and high level pain on our own.

Jamie

You are very lucky. However this is not a typical experience for CPPs. We are more often abused or abandoned by our spouses. I’m happy life worked out in your favor in this way, but it’s not the normal way of things.

Teresa Ingebrigtsen

Dear Ellen,
Thank God for husbands who take marriage vows seriously. Mine does too and I thank God for him every day. He watches me struggle with arthritis pain in my feet and in my back, as much as I try to just ignore it, sometimes it is just too much. He is awesome. He never complains, I complain, but he never does. He is a man of God, and I am blessed because of it. May we soldier on!
Teresa

Martha

Having just read the very sad comments below – to those in horrible situations, know this: You are with or married to, a Narcassist. There are 7 types, with ‘Covert’ & ‘Malignant’ types being the worst types to be with. You are sick & it’s not your fault. Go on YouTube & search for videos/ channels dealing with Narcassists.
You will feel better & much stronger by knowing what you are dealing with. Learn about it for your own sake. Knowledge is Power.
Good luck & hugs to all.

Terry

I absolutely agree. I would like to share with you all a response that our governor (michigan) replied with and I think you’ll see why I get so frustrated.
In December 2017, the previous legislature and last administration enacted new laws to address Michigan’s rising substance abuse epidemic. In that 10-bill package, limitations were placed on prescribing opioids for acute pain, limiting such prescriptions to a 7-day supply. However, such statutory restrictions do not apply to those suffering with chronic pain, and licensed medical physicians have a responsibility to meet their patients’ standard of care. Should you believe that a physician or any licensed practitioner is not fulfilling his or her responsibilities to meet a patient’s standard of care, you may choose to file a complaint with the Michigan Department of Licensing and Regulatory Affairs (LARA). You may find more information on how to do so here: https://bit.ly/30tAren

Martha

How lovely Ellen! You are truly one of the lucky ones. I am so glad you took the time to write your beautiful love story.
Yaaay Stu, you’re a hero!
I am not that lucky. My husband doesn’t want to hear anything about my health. I am not sure how I will manage on my own – but anything has to be better than this. 🙂
BTW – have you ever considered lining up family & friends in order to give Stu a few weeks “off” so that he could travel for 2 or so weeks? It may help soothe his PSTD heart & mind. You could Skype or facetime every day. Just a thought.
As always, thank you for your posts & encouragement. Hope you have a “good” day with less pain.
Martha

Soldier

You are very lucky. My wife complains about my stage 4 cancer all the time . Blames me for spending money on drugs as she calls it . And is tired of this life . She wants to go out and go on vacations ect we do things but a lot of the time my pain is so bad I can’t move . This only makes her mad . I suggested she leave me , that it’s better for her ! I thanked her for her help and she should live her life as she see fit . I live alone I don’t mind I deployed to Afghanistan 4 times and Iraq two deployments. I was very healthy now I’m not ! I told her she’s better off being the way she feels . My only son and child passed away two years ago so I’m totally alone. But I just don’t care any more I have a small rv I can live in I collect disability it’s not much but my life is horrible anyway. You are very very lucky and I’m so happy for you , you deserve it , nothing less . I’m so tired of being blamed for me cancer and her horrible life because we can go out that much , living alone for me wine better . As you can see in my case . I even get yelled at when she has to pick up my medicine. I’m always depressed and tired of being blamed so I’m very glad your with a great person unlike my wife . Good luck with your treatments

As always your pieces are so touching. My husband has had to endure the “in sickness “
part of our vows for nearby 4 years. I may share this writing with him.

Dee Baldini

You said it so well. I am one of the lucky ones, My caregiver is also my husband. He does the wash & food shopping. Helps with the cleaning. I thank God everyday I have him.

Anne McCallum

Hi Ellen,
My heart goes out to you. You’ve been through so much. It’s so marvelous that your husband is supportive. I want to thank God for your husband. You are amazing for reaching out to people on the internet. Thank you SO MUCH!!!!!!!!!!!
My faith in the Lord is what has been helping me. I have been in chronic pain for as long as I can remember. My husband has emotionally abused me and once physically… on and off for 42 years because of my declining health. He blames me for speaking up and now wants a divorce. He is a presbyterian minister and is the “perfect pastor”. Please don’t let that turn you off of Christianity.
I have had two strokes, (the first in my early 20’s), have fibromyalgia, arthritis in all my joints, bones that are deteriorating severely in my neck and jaws, 9\9 on the B scale for hypermobility and am being referred to the Ehlers Danlos clinic in Toronto. I have metastatic breast cancer and am in ongoing treatment. My husband has managed to convince three of my four grown children that I see myself as a victim because I want and need to talk about my health issues and ask for support. My heart is breaking not for me and my health, but for his soul. He told me he wants to pursue a new relationship. When I had said 25 years agao about “in sickness and in health”, he said he didn’t think I’d keep it up..refering to declining health. He has also wished me dead to my face and then says he said nothing of the sort..that’s gaslighting and cruel because my cancer is the type that goes into your brain and bones.
My Christian friends and counselor have helped me along. I have felt suicidal many times BUT Jesus continues to heal my emotions and shields me from yes…even a few weeks ago more emotional abuse. There is abuse from his church, my kids and now financial with this divorce. God will help me out I am sure!!!!!!!!!!!!
THANKS for listening. I will be praying for you because it is so incredibly difficult for you. Thanks again