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...