living our best life – shared knowledge

/ simplywendi
Photo by Ben Mack on Pexels.com

If you could somehow relate the complexities of living with a chronic illness to your spouse, significant other or a close family member, what would you like them to know?

As always, thank you so very much for taking your precious time to spend some of it here with me. You are deeply appreciated!

107 thoughts on “living our best life – shared knowledge”

  2. That invisible illness are just as challenging as visible ones. The days I am down and out are not me being lazy, when I feel reasonably okay I do, when I don’t, I don’t. I know you mean well but stop giving me advice, I’ve heard it all before. Just because you know someone who has a similar condition and are doing great, remember everyone is different. Blessings..

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    • Thank you SO very much for sharing this Paula! You hit so many great points that unless you have lived it, you just don’t get it. We are not lazy and we would give so much to be able to do what we know we are capable of doing when we were well. And the advice……….sometimes it boarders on aggressively rude. Thank you again, I hope today is being good to you and brings you a smile. 🙂

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  3. I think the worst thing about living with chronic illness is the fear, Wendi. I see it with my son and my mother. Every time my mother gets anything wrong with her, even a small thing, she thinks its cancer come back. My younger son is very anxious about death and dying. He gets a lot of comfort from his faith. It is a terrible burden for a young person.

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  5. One way I do that is by having him go to my doctors apppointments. Then I don’t have to explain as much, the doctor can tell him and it makes such a difference. Then when I need his help and explain what I need and why he most of the times undwerstands. The biggest problem is the guilt we put on ourselves.

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    • Oh the guilt………..I so wish I could monetize the guilt I feel, it is overwhelming isn’t it?! I love that you have him go to your appointments and that is helping him understand (at least in part). Thank you so very much for sharing, I hope today is behaving itself and you are brought smiles today.

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  6. I may look ‘fine’ while feeling anything but. I feel overwhelmed, with the heavy weight of guilt on my shoulders and feelings that I ‘should’ be doing more, even though I’m doing more than I can handle already. I’m worn down and frazzled, so please don’t look at me like I’m lazy or think worse of me. I’m doing the best I can. Sometimes I just need to know that it’s good enough.

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    • Oh Caz……..I feel every single one of your words to my core! And like Kathy comments, yours also brought tears to my eyes…..you expressed it so beautifully and you are right, the guilt is overwhelming and the pressure we put on ourselves to over-perform our abilities is mind blowing. Thank you so much for sharing this………You are more than good enough………YOU are awesome and wonderful!!! Please don’t forget that.

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  8. That sometimes we may be centered on our pain or illness…but we do really love them to bits. All their care, support and patience is a jewel even though sometimes our own patience has dwindled with it all 😀 ❤️ 🙏🏽 🦋

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    • This is absolutely beautifully expressed Mark! Thank you so very much for sharing your lovely words……..we are so blessed to have those around us who have stayed! Thank you for sharing………it is always a joy to read your thoughts! I hope today is being good to you.

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      • Yes dear lady, a 2 hr nanna nap was a treat indeed. Ah, the things we take for granted. I have a greater appreciation of many more things dear lady, may your journey give you a hearts respite also 😀 ❤️ 🙏🏽 🦋

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      • I know this great massage therapist who can take your mind to another place, a very de-stressing, gloriously relaxing massage that 98% of his clients ‘let go’ to meditate for 30min then drop into a very deep, healing sleep. Its at least an hour somewhere else but reality. For you, you might have to ask family to chip in and buy it for you for Christmas dear lady. Mind you, you will have to ask around to find ‘the one’ to help you ‘let go’ 😂 🤣

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  9. Wendi, that in my life is very complex. It is too painful for my husband to even admit I struggle so he chooses to “not see”. That hurts at times but because I am the strong woman I am and I “know” the why’s behind most behaviors, I let go of that hurt. He has so much pain from Vietnam he just is not able to address someone else’s pain. I’ve got tears in my eyes as I write this. Very emotional today. He knows about the pain I live with but just doesn’t express that he knows. When I need help and I ask for it, yes he does help. There are times I wish he would just offer though. Yet there again ….. he is who is is. He really does a lot for me like shopping and making sure the house is repaired etc. It’s the emotional aspect he struggles with. He’s so afraid to get in touch with his pain.

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    • Oh AmyRose, I have tears in my eyes reading this. When you stated that your husband was in Vietnam my soul sank……..I spent years working at a VA Hospital and one of my “specialities” was PTSD. I cannot imagine the pain, fear and trauma he endured but I do know what it does to a person. That being said, it also takes a very special individual to share a life with someone who has endured sure unimaginable horrors. I am praying for both of you this evening……and I am sending buckets of love your way. Thank you for your willingness to share this……I know it will help others, even if you never find out.

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      • Wendi, my Father begged me not to marry this man. I did not have a clue what it would be like to live with a man who suffers greatly from PTSD. Gone are the joy for holidays, no more fireworks on the 4th, no going where crowds are …. and a lot more. I’ve adjusted to a very quiet life and knowing the “signs” when he is not only heading into a PTSD state and how to act when he is. Love makes one strong. I know for a fact 36 years later, if I had not married this man, he would not be alive today. He has come so far in leaving behind some really bad habits. But to live a life so unlike what I would “like” to live, I have come to accept. Out of that, my passion for photography grew and grew as did my blog. I have such a special connection to Mother that if I had another life probably would not have. A LOT for me for GOOD has come out of this relationship. If anything, it has made me look at myself to get rid of dysfunction in me and to grow in wisdom. No one who has experienced anyone who lives with PTSD can understand …. God bless you for telling me you understand. I’ve got tears in my eyes. Not many people understand and so do not get it why I stay with a man who is so unreachable so much of the time. I’ve learned to love me and my time with me. xo

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      • Oh AmyRose, thank you so very much for sharing this as I KNOW someone will read this and find comfort. Please know that I DO understand, all too well not only what you husband goes through but also what an incredibly special person you are, a gift from above to your husband and the way you have turned his issues to help you grow in truly amazing. It usually doesn’t turn out that way for many marriages. I heart goes out to both of you, I have sat and listened to HOURS and HOURS of stories from Vietnam Vets that to this day still haunt me. These men lived through hell and the hell seeped into their bodies and getting rid of all of that pain is something that is so scary that it seems easier to shove it down and self medicate. I am going to start praying for you and your husband………..God bless you my friend……again, thank you for sharing this!

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      • Again I’m in tears. I love my husband so much, Wendi, yet there are times I honestly don’t know if I can continue on with him. He’s so broken inside. Because of who I am, I see beyond the brokenness and know if his pain is dealt with which ONLY he can do, the man I know exists can come for air to live. What is happening in our state (NY) is triggering him badly and he is flying in and out of PTSD. I’ve never prayed so hard in my life!! Sending you my love and pray God’s blessings over you and all who read my words. BIG (((HUGS)))! xo

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      • Oh AmyRose, I know you love your husband deeply and I know he loves you too……I so wish I could help. I don’t want to ask too many personal questions but has he ever talked to anyone about his experiences?
        I know God is hearing your prayers for your husband and I have been praying very specifically for both of you. Can you tell me his role while in Vietnam?
        I am sending you buckets of love…….I know you need it.

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      • Yes he is regularly speaking to a counselor. This man I consider an Angel. My husband was a scout ahead of the front lines. Oh yeah. Heavy duty. He still to this day does not know how he made it home alive. Part of his soul stayed behind however, and that is “who” I’ve been calling to return to my husband. And thank you for the love. God bless you! xo

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  10. Oh, Wendi, thank you for always sharing your compassionate heart here! You ask such great questions that bring our deep hearts to the surface. Recently, a close friend went through surgery and sickness and afterwards asked me if this is how I feel all the time? Then she said that she had so much compassion for me in the “constant-ness” that chronic illness & pain brings. So I guess that is something that I wish I could communicate better. This is something that continues, day-in and day-out, and we have to look for the small relief because the “big-relief” may not come in the way we had hoped! Blessings and prayers for you tonight, dear friend! xo

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    • thank you so very much for sharing this story Bettie. Yes, if others could only know what we go through day in and day out, there would be so much more compassion in this world……….God bless you my dear and I hope today is being gentle!

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  11. I didn’t had to relate them to my husband as he knew first hand by just seeing what I was going through. He would do whatever he could to ease my pain, including numerous doctor visits. But to others it is difficult to relate what it felt like!

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  12. It is difficult to explain living with chronic illness to friends who are not. I have learned to focus on the friends who are willing to just try to understand. I do wish some would stop with the unsolicited advice even though it is well intentioned.

    The main person I look to is Jesus. He understand physical pain having experienced it.

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  13. Its so hard when our suffering is so invisible to others and reading all the comments its the similar things that hurt us, that we can be accused of being lazy and even be too hard on ourselves and so push ourselves too much.. There is so much I would love others to know about hurt stored deep inside from past trauma but today I know unless you suffer something you can never fully understand and people who are shut down hate you opening up because it threatens them.. It took me a long long time to realise this..

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  15. Seems you’ve really touched on the core of our emotional experience, Wendi. I have experienced anger, disappointment, and distancing from loved ones and I want to tell then that I miss me too – that their loss is no greater than my own, and that essentially I am still the same person just in a different package…oh, okay, a little quirkier brain. I remind my husband constantly that I at least make life interesting. No?

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  16. Thank you for sharing!!.. I would say “do not treat me different, nor shower me with pity, be my friend and “No matter the pain or suffering, it is always better if it’s a burden shared by two, instead of a weight carried by one alone”… (Larry “Dutch” Woller)… 🙂

    “Portrait of a Friend”

    I can’t give solutions to all of life’s problems, doubts,
    or fears. But I can listen to you, and together we will
    search for answers.

    I can’t change your past with all it’s heartache and pain,
    nor the future with its untold stories.
    But I can be there now when you need me to care.

    I can’t keep your feet from stumbling.
    I can only offer my hand that you may grasp it and not fall.
    Your joys, triumphs, successes, and happiness are not mine;
    Yet I can share in your laughter.

    Your decisions in life are not mine to make, nor to judge;
    I can only support you, encourage you,
    and help you when you ask.

    I can’t prevent you from falling away from friendship,
    from your values, from me.
    I can only think of you, talk to you and wait for you.

    I can’t give you boundaries which I have determined for you,
    But I can give you the room to change, room to grow,
    room to be yourself.

    I can’t keep your heart from breaking and hurting,
    But I can cry with you and help you pick up the pieces
    and put them back in place.

    I can’t tell you who you are or who you will be
    I can only love you and be your friend
    (Adam Clarke)

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    • Oh Dutch!!! You always add such beautiful quotes and one of them being yours is extra special. I LOVE what you wrote…….it is so true, and to have someone to share the burdens with is a true gift. Many blessings to you my friend…….I hope today was good to you!

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  18. Although I don’t live with a chronic illness per se, a process I’ve been going through for the past almost four years has been chronically debilitating, both physically and mentally. It’s like living with a chronic fatigue syndrome with some symptoms of depression (even though it’s not). Most days I’m giving my all just to get through the day. I wish my family understood that when I’m in bed or on the sofa for most of the day it’s because I’m barely surviving. That when it looks like I’m doing nothing, I’m struggling big-time. I wish my husband understood that some days I need quiet all day. No TV blaring all day long for background noise. I wish he understood that the reason I ask him to do things is because I physically can’t do them right now- I’m not lazy. And I wish he wouldn’t take any bad moods personally. They don’t have to do with him.

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  19. When I get low glucoses, please stay with me til they raise. Please bring me something to raise them instead of walking away. I know I’m grumpy and tired and constantly try to do things on my own, but this can sometimes be too much. I do all my care on my own and I know you want me to use my surplus cash to help pay for my meds, but please help me if you can and not just when you hear me fall or drop something. Although, I do thank you for help then. It often takes a while, I know you have more important things to do than watch a person sit still til her glucose rises, but I’d like to not be alone.

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  21. You asked the question, an answer my heart has been capturing. A couple of months ago, my heart was stirred… seeing all my wife has been facing. And so, my heart started writing. I will probably post it, in the new year. I will, share a bit of it with you!

    “It’s not about what I feel, but what you need… me to feel; still in love. It’s not about, what I’m honored to do; but what, I’m privileged to be. What, God has called my heart to be, faithful. Even with blinders, for my heart there would be absolutely no mistaking; I will, always love you!”

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  22. Riding the Roller Coaster where there is no getting off can be relentless and unforgiving

    Those that ride it know how agonzing it can be so I say to their familes just being there not saying anything but them knowing you are there for them.

    Means more than thousand words as it let them they matter and have value

    https://evolutionofselffeedyourhunger.wordpress.com/2020/11/18/asphyxiation-of-decay

    https://evolutionofselffeedyourhunger.wordpress.com/2020/11/30/highway-of-broken-memories

    luas dia I do thruas

    Alex

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  23. I have been luckier than most, in when I was at the peak of my own chronic illness my husband understood.. But when a chronic illness is hidden and you look okay on the outside when inside you are in pain….
    I think Patience and Understanding are the main attributes I know speaking personally I have tested that patience many times….
    Sending love your way Wendi..
    And so enjoyed catching back up with your posts today ❤

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  24. To echo the last comment above–I also think I have been lucky in that my husband has been incredibly understanding when I’ve been suffering with chronic illness!

    Having said that though: there are times when I am irritable because I am in pain and my husband has taken that very personally or wanted to ‘fix’ what he perceives as a problem when really I’m just suffering in pain and tired of pushing through it and feeling grouchy because of it. However, in his defense, he usually has no idea just how awful I am feeling and doesn’t realize that is causing my irritability sometimes. And so I’ve learned to be better about sharing just how physically hard some days really have been for me, (I don’t like to talk about the pain–seems like complaining) and he has learned not to take it as personally since physical pain is often the main reason when I am lacking in grace myself.

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    • Thank you so very much for stopping by and joining in this discussion, I truly appreciate it. I LOVE that your husband has been supportive, a true blessing. Pain has a way of changing you, and when you spend each day pushing through it is hard to keep pleasant. I am happy to read that he no longer takes it personally because that can be difficult for a spouse to understand. Thank you so much for sharing this and I hope today is being kind to you.

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  26. That’s a tough one. I am lucky to have compassion and understanding, yet it feels at times that no one can truly get it unless it’s experienced by themselves. It’s something that tests you, shows you what you’re made of and will send you searching to reinvent yourself, finding new motivation over and over. It’s something so powerful and yet horrid, I wouldn’t want anyone to experience and feel this at this kind of level.

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  28. Honestly just how exhausting it is. I cant make any movement at all at any point in the day without considering how my body will move, which bits will hurt, how much energy will I deplete? Its relentless. And exhausting. And lonely.

    Thankyou for this conversation x

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    • Oh Liz, I am SO very sorry you know what all of this mess feels like. Yes, it is completely exhausting and the whole uncertainty of not knowing from one minute to the next how you are going to feel is down right unnerving. I am so very sorry that you feel lonely………I know what this is like and it can make the pain even worse when you don’t have someone to “share” it with.
      Please know that we are thrilled you are here. I have found the chronically ill bloggers on WP to be amazing………
      Thank you so much for stopping by and commenting and your willingness to share a small part of your story.

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