Wednesday, July 20, 2011

In Sickness and In Health

This week's big revelation for me: it is easier to be sick when you live alone than when you live with another person. Disagree? Many people would. They would retort that it must be a lot easier to have the support of someone living with you when the going gets tough in the medical department. I cannot really disagree with that on some levels but on others, I feel like this week I can; even when you live with the most compassionate, patient, and nurturing man God has ever put on this face of the earth.

So why would I complain? Well, I am not complaining, just stating some facts. I am also not implying that I would ever want to change my living situation, so no rumors please! When you have a chronic illness, you live in a state of constant unpredictability. As I talked about a bit in a recent blog entry entitled False Assumptions, there can be days and even weeks where life just goes along relatively smoothly. You take your medications, keep your routine appointments, and manage your chronic symptoms as best as you can. However then there are days or weeks (maybe even months) where it is one constant battle after another.

Since about May or so, I have had one new issue after another to deal with in regards to my autoimmune illness. Hearing loss, dizziness and headaches started off this episode and now I have developed issues with my salivary glands which have resulted in pain, difficulty eating, more horrendous headaches, and just general discomfort. Add in a new round of steroids which are messing with my weight and to a small extent my mood, as well as some concerns about swelling near my lymph nodes (I am also a lymphoma survivor) and it is the perfect recipe for stress and exhaustion. I am mentioning all this not as a request for a pity party from my readers, but to lay the foundation to explain why it is sometimes easier to live alone. This is the most complicated my health has been since moving in with my boyfriend six months ago. I don't just have myself to think about anymore when the going gets tough.

And that is what scares me. See, when you live with someone and are as connected to that person as I am to him, you can't hide your little medical crises that well. I know, I know, you shouldn't want to downplay that kind of thing from your significant other anyways. I can't help but think that it would be so much easier though if I could. Why would I want to? Because I don't want to bring him down. It can be exhausting to live someone who is physically struggling day after day for any period of time. Even despite my best efforts, the medical business can consume my day and our conversations. I guess it is good that I can step out of myself long enough to realize that. I know he is an adult and can take care of himself, but because I love him, I want to protect him; even if that sometimes means protecting him from me. Because when the autoimmune monster rears its ugly head, I just don't have much to offer anyone and my boyfriend deserves to have someone who is emotionally and physically available.

The other point is that when you live alone and are dealing with an onslaught of medical issues, you can hide. Just pull up the covers and let yourself wallow in self-pity. Shut down from the world. To be honest, I don't do that too often but when I do, I go all out. I put a special blanket on the bed for the dog so we can snuggle, grab my books, laptop, and TV remote to make sure they are not more than an arm reach away. I don't answer the phone. It usually only lasts for a day or so, but I think that it can be necessary to give in and let myself emotionally (and physically) recharge. That day or so is actually a self-imposed time limit whether I am ready to face the world again or not. I know from firsthand experience that falling into a depression is only a few extra self-pity days away.

Here's the thing though. I don't want somebody else to actually witness me doing that! Oh no; I am a strong and courageous autoimmune-fighting warrior. I cannot let someone see me vulnerable! I have to protect the world! Yes, I do realize what bullshit that is now but like with everything else, figuring this out is a work in progress. More accurately, US figuring it out is a work in progress. We talked about all of this quite recently and here is what I (we) figured out:

~ It is not always my job to protect people that I love when I can barely take care of myself.

~ Trying to down play how lousy I am feeling or how scared I am with the person I live with serves only to alienate him, therefore making me kind of an idiot. We are only as strong as our communication with each other.

~ I am not sick three hundred and sixty five days a year. My turn will come to be there for him if I haven't done so already. Now that I think about it, I have; he's not always good at doing dishes before going to bed!

~He has some pretty strong views about not letting me wallow in any form of self-pity for ANY period of time. I think that is a very good thing in many aspects but I also sometimes think it's necessary as I explained above. We will have to find middle ground on that one unless I make myself limit it to the span of his workday...ha!

I would love some input on this issue from those of you with medical issues who cohabitate with someone or live with someone who has their own medical issues. Be honest because chances are, you are not alone...


  1. Well, I can't comment on being ill and living with someone, but I can comment on how uplifting it is to see someone handle a tough situation with such grace and dignity. Don't worry about him, he's exactly where he wants to be.

  2. I am only going to say that you are both extremely lucky to have each other, in sickness or in health. Thats what its all about!


  3. Okay I will try again, although trying to duplicate what was coming from my heart may not be exact...
    First I would like to say that I too, deal with auto immune, as well as many other, health issues. At times, I have felt like such a complete burden that I just want to crawl in a hole and disappear from all of the turmoil and stress I bring to our home during chronic periods. I have 3 children and 2 mothers to care for, so the stress and pressure can almost explode at times - as I almost never have the time to just go to bed.
    I will say that with Todd working 11 hour days, and being so amazing at picking up the slack, my guilt and need to participate are overwhelming and instinctive. We are woman - God gave those feelings to us, and I dont think there is any escaping them.
    With all of that said... I have been with the same man - the love of my life - for 18 years. As with you, I have had good health times, and not good health times. He has spent the last 18 years proving to me over and over and over again, that he loves all of me.The best of me, and the sickest of me. My last - most horrific, embarrasing, depressing chronic time I went through stressed him out - yes. But his words and actions showed me once again - that we are one. His words to me after the most humiliating days of my life were "nothing about you is gross, and I would do anything in the world for you"
    When you truly love someone, they accept all about you Christine. Everything. And if you need to pull the covers over your head for two days, it is really okay. You need to be comfortable with youself and trust in the wonderful man that you are with. I hope those times dont happen often, but when they do - I guess be thankful you have many rooms in your home. And learn to be okay with him asking you if you need anything- and no IS an acceptable answer.
    True love accepts all. When you need to retract, it IS okay- even when living with someone. Because as you say, it does go both ways. You need to be comfortable doing what you need to - and not watching the clock. And feeling no pressure when the "work day" is over. It is okay to not have to please and entertain every day.
    18 years I have been with the same man. He has proven to me over and over and over that he loves me for exactly who I am, and I have done the same for him.
    We are both blessed to be with strong, but very layed back men. Again, for the last 18 years, the brother of your boyfirend has been trying to convince me that I am the person that was put on this earth to be with him. And when you can finally do exactly what you need to do to help yourself and not worry about how it is affecting your other half - life becomes so much more beautiful.

    Be yourself, do what you need to do, I hope Chuck does the same. Nothing needs to change because you live with someone. Because you live with someone who loves you!!! Please don't let it take 18 years for you to figure that our like I did. Such wasted years.
    Love is a gift. It allows you to be exactly who you are, and lets you accept your love for exactly who they are - hard times and faults and all.
    Trust in that. Love and breathe that. And then relax. Moving in with someone didn't change anything. Because you moved in with your love.
    How lucky are you both...

  4. Carla ~ Thank you for your kind words! And I do have to agree that he is right where he wants to be...

    Sue ~ That is what it is all about!

    Brenda ~ We are both so lucky. Thank you for sharing your story here. I guess that is why I have been expressive about this issue recently, both with Chuck and on the blog...I don't want to keep feeling guilty or bad or have any other negative emotion because of something I usually have little control of, meaning have a flare up. I need to be aware of him and his feelings while at the same time, trusting that he is by my side always no matter what happens. I PROMISE I won't take 18 years! :-)

  5. Personally, I have MS, epilepsy and a brain tumor. My husband has Cystic Fibrosis. We are to sick little married couple but we work together well. It is hard at times, and I feel like I use him more than he "uses" me. But our illnesses are different. He goes to the doctor appointments with me and hears everything they tell me, gets to ask his own questions and knows everything that I know. So yeah, being sick sucks. But having someone who understands is great. He gets over worked by me, I am sure. But he will just take out time for himself. On days I am not feeling hot, he will snuggle out on the sofa while I am in the bedroom. When he is sick, I try so hard to be there right next to him the entire time, because he does so much for me. But the second he needs space, he gets it.

    Communication is key. Be honest. Dont self pity. Trust me, you will get pity from others whether you want it or not. Be glad you are doing good on the days you are, and take it easy on the days you aren't. But be honest with the bf/husband/lover. They need the truth, as much as you do. :)

    (I hope I didn't confuse you. I tend to get a little off topic or go on rants..)

  6. Trisha ~ You didn't confuse me! Very good advice so thank you and hope you have a great weekend!

  7. I've been trying to figure out how to say this, and this is as close as I can put into words. I live with PTSD (an invisible illness) and my wife is a saint. That said. there are times when I would like to just disappear and not be noticed. It would be easier for me...but not necessarily better for me. It is when I am feeling so lousy that I need (despite my protestations) the feedback my wife can afford me from her vantage point. I need to realize that she is speaking to me out of her love for me (which is really hard to hear when I am feeling un-loveable!)...and she has realized that sometimes I need my "wallowing" time.
    I am glad that you have found someone who speaks out of their love for you, when you are in cocoon mode. I am glad that you respect each other enough to wrestle through the discomfort of those awkward conversations. It makes me glad to be your minister.

  8. Todd ~ That never occurred to me before; about how my autoimmune stuff and your PTSD stuff are similar in regards to being invisible illnesses as well as the wanting to hide and shut down part. Thank you for sharing that! I am glad your are our minister as well because besides the fact that you are an excellent one, I wouldn't have my "someone" if it wasn't for you!

  9. *raises a glass of lemonade* Cheers!

  10. If God appeared before me and said "I will send Frank back to you under one condition... he will be sick at least 50% of the time and will require your care and understanding." What would I do?

    I would thank God and beg him to send Frank back immediately.

    For over 20 years, I loved him and he loved me. For better, for worse. For richer, for poorer. In sickness, and in health. 'Til death parted us.

    We both defined love as "the expectation of being given good things." This, to us, meant good things such as respect, patience, understanding, compassion, and - at times - space.

    I am blessed to say I was his happily ever after.

    I pray that you and Chuck are as blessed.

  11. Gayle ~ I pray that Chuck and I are blessed with even a fraction of the joyous years that you and Frank had. He was quite a special man and the two of you had that once in a lifetime kind of love.

  12. I cant remember what i was saying before- Oh the joys of the sjs brain. lol anyway I totally get where you are coming from on this. I agree that we need to have some "wallow time" if you will. We need understanding people but the problem is unless you have it then you cant ever fully truly understand what we go through. You gotta find a happy medium that works for you both. I have 3 kids so getting me time to stay in bed is unheard of and if i am given the oppertunity I feel guilty leaving all the work up to him. Maybe sit down and work out an acceptable amount of "wallow time" something you can both agree on. It is important for us to have that rest time. I know for me if I dont rest when i feel like i need to it puts me out for days at a time. I hope you guys can come to something. It sounds like you have a good man who is trying to understand what you are going through. Dont hide it from him. I know that can be tough but men need to feel needed and wanted and hiding it from him even though we think we are protecting is exactly like yuosaid alienating him. Hang in there. I dont know if this made sense or helped in anyway. If you take anything from this please know I now exactly how you feel. I enjoyed reading your writing and I look forward to following you in the future. Take care

  13. graced ~ I loved your comment. So much so that I went to your profile and found that you have a very cool blog too! Anyways, I admire you for going through this Sjogren's business with 3 kids...I cannot fathom doing that but I guess you do what you have to do to get through it. Still an amazing feat though!

    You are right about the rest part being so important. I often find myself struggling between making sure I pace myself and wanting to suck the life out of every day; it can be quite a conflict at times.

    Thank you for sharing your thoughts with me. It does help tremendously to know that someone gets exactly what you are going through.