Sick and Tired

Have you ever had the flu so bad or for so long that you just didn’t know how you could go on like that? Have you ever been so sick that the thought of living one more day in that condition just felt impossible? Have you ever felt so exhausted that it felt like you might never feel rested enough again?

Imagine feeling like that most of the time. Imagine this lasting for months at at time. Imagine that your good days are those short periods of time when everything is just somewhat ok and your bad days not only out number them but are beyond bad into the miserable.

Now imagine trying to explain this to anyone who has not had to live with these types of symptoms or ailments.

For instance, I know my husband loves me and understands as much as someone who hasnot lived with this can understand. I know he tries to be there for me and he does an amazing job. However, I don’t have a way to explain to him how hard it is for me to be so exhausted that I can’t even spend time with him. I don’t have a way to explain to him that I’m in so much pain and so miserable that most days I have a hard time figuring out how to keep moving forward into the next day. He understands for the most part but there is so much of this I cannot even put into words and when I try I can see the confusion on his face.

You might be someone with chronic illness and totally relate to this. You might be someone who knows someone with chronic illness and you try so hard to relate to them. Or, you might be like a few I know who have chronic illness and because you haven’t reached this point yet you don’t understand and you think anyone who’s where I’m at has given up. I haven’t. I don’t plan to. But I promise that there are a LOT of moments that are not easy and I am so tired of being tired, in pain, and miserable.

Intimacy

For the last week my husband and I have been experiencing a whole new level of intimacy and closeness that after 21 years is not only surprising but welcome and amazing.

When I say intimacy what is it that comes to mind for you? Is it sexual, physical, mental, emotional? What exactly is intimacy?

The dictionary defines intimacy thusly:

1. the state of being intimate.
2. a close, familiar, and usually affectionate or loving personal relationship with another person or group.
3. a close association with or detailed knowledge or deep understanding of a place, subject, period of history, etc.: an intimacy with Japan.
4. an act or expression serving as a token of familiarity, affection, or the like: to allow the intimacy of using first names.
5. an amorously familiar act; liberty.

I think that intimacy, at least to me, is about this and so much more. It is a combination of close physical love, emotion, trust, and conversation.

My husband is not just the man I am married to but my best friend, though in the last few years sometimes that was not easy to see. We had grown comfortable in our silence. We shared very little with each other in an effort to keep each other from being upset. But that was not creating real happiness, it was simply avoiding wonderful conversations as well as the difficult ones.

In a long term relationship it is possible to live in many ways. I’ve seen it in the few couples I know who have those long lasting relationships. Some people almost never communicate with one another on any kind of meaningful level and they are ok with that. They live in comfort and security, but I have to wonder if there is happiness, joy, and that deep emotional love that we often find only in the very beginning of relationships.

Some people find other ways to spend time together but they simply don’t share their deepest thoughts, emotions, fears, and even fantasies with each other because it is uncomfortable or they feel silly or embarrassed. Again they are comfortable and secure but is there all that other wonderful emotional stuff that comes with real communication.

Still others choose not to share such communications because they fear if they did their significant other might think badly of them or even leave them. I say if that is truly the case then the relationship is already questionable.

There is NOTHING sexier than real communication, than the telling of truths to each other, than the sharing of emotions, thoughts, and those things that we might keep hidden from almost anyone or everyone else. This is the person YOU chose to spend your life with, shouldn’t there be enough trust between you that you could choose to share your deepest thoughts and emotions with them.

This is not always easy or even fun. Two nights ago my husband had something difficult weighing on him. I’ve known him long enough and know him well enough to have spotted the signals. I asked him and at first he hesitated to share it with me, but after a bit of other conversation he opened up. We talked about it for enough time that we both lost track of how long and in the end we not only both felt better and lighter but we felt so close and intimate that we furthered on into more physical sharing.

Tonight, once again, he had something weighing on his mind. When asked he quickly shared it, however he was already so upset that his sharing wasn’t gentle and it ended us up in a difficult discussion and I was hurt. However, we chose to continue the conversation, not at a distance but laying next to each other where we could feel that intimacy and comfort. Again the conversation was long and this time uncomfortable for us both but in the end we both felt better and lighter. We ended up holding each other for a long time, kissing and hugging, holding hands, and even laughing.

So what is intimacy to YOU? What is it that could make your relationship even stronger, even better, and possibly even more physically active? What is it that your partner needs to feel that intimacy?

When we first fall in love we have butterfly’s in our stomachs, our partner brings a smile to our face and a lightness to our hearts. Sometimes as the years pass we begin to feel that fade into simple comfort or even discontent.

I am ever so fortunate to have a husband who cares about my needs as much as I care about his. And because of that mutual concern for each other’s happiness we make an effort. With that effort I get to feel that “falling in love” feeling with him all the time or at least a larger majority of it.

Of course there are times when we are content to do our own thing, me watching tv and him playing games or vice versa, but we make an effort to spend time together every day without question. Even if it is just laying down and holding each other in silence. We make an effort to pay attention to the signals the other sends out. We ask each other how we are doing. We show that we want to be there for one another and then we back it up when the need arises.

People sometimes ask us how we have lasted 21 years with ALL we have been through. People wonder sometimes how we are still together and still appear so happy. I tell them it goes beyond appearance, we ARE happy. Life isn’t always easy but walking together down this road, as bumpy as it often is, makes things much more tolerable. Life sometimes sends us spinning but I know he will be holding me so I won’t spin out of control and he knows I will be holding him too.

So I guess tonight I say BE THERE for each other. Remember to talk to each other. Share a secret with your significant other that you never thought you’d share. Be honest and open in a way that might not be very comfortable at first but can open a door to a whole new kind of relationship for the two of you. And mostly I say be happy. Enjoy your love and your life.

You’d Be 20

Your birthday is approaching, but you knew that. I had almost forgotten but then I realized it today. My mood is always darker and more difficult around this time. Sometimes I don’t even have to know the time is coming, the mood strikes and I try to figure out why and then I realize.

You’d be 20 this year. Questions fly through my mind like a whirlwind of pain and confusion. What would you be like? What would your boyfriend or girlfriend be like? Would you be going to college? Would all our lives be drastically different?

I miss you with every piece of me. Sometimes I think of your laugh or your smile and it fills me with love and joy. Sometimes the gift of knowing you at all is enough. And then other times I am filled with a pain that is indescribable. There is a hole left in me, an emptiness that simply cannot be explained to someone who has not lost a child.

Our lives are better just because you were in them even for a short time, but you’d be 20 this year and somehow I feel so very robbed by not being able to share that with you.

I WON'T Pretend

I won't pretend. 

You get what you see. 

Some days I really am just that happy 

and other days I'm really struggling more than words can express. 

I won't pretend. 

At least you know I'm honest. 

At least you know what you are getting. 

I always love you. 

And if you are my friend 

I will protect you and defend you fiercely. 

I don't expect any more from you than I'm willing to give. 

I won't pretend! 

Some days I'll let you know I'm in a bitchy mood 

and probably not good company

but it doesn't mean I don't love you 

just that I don't want to hurt you with words I don't mean. 

The pain in my body sometimes makes me a monster

but I'm aware of it most of the time. 

I won't pretend. I won't! 

If I'm not in a good mood you'll know, 

I don't pretend to be happy when I'm not 

or depressed just for attention. 

I don't want things to be this way but they just are 

so you get what you see. 

and 

I won't pretend for anyone! 

Living with Chronic Illness

When you first become ‘disabled’ it is a difficult adjustment. Learning your limits, knowing what you can and cannot do or eat or tolerate. Accepting that life has changed in some significant way.

Eventually you accept your ‘new’ life and you move forward. You learn new things to do and new ways to live. As time goes by you adjust to this new level of normal and it becomes easy to continue living. It becomes the norm. It becomes just your everyday life and eventually you don’t even think about your limitations because it is so natural to avoid them.

Then one day your illness or condition worsens or develops into something more severe and it starts all over.

In my case I’ve developed severe arthritis in my back and neck. It causes migraines on a daily basis. I can’t sleep in my own bed because of the severe discomfort. I feel sick to my stomach all the time. And because of this developing after years of my ‘new norm’ I am now going through massive depression.

I feel like I’ve become so useless and difficult to be around. I can’t get up and do things like I used to and when I do it exhausts me and leaves me in a massive amount of pain. I know my poor husband feels neglected, though he tries so hard not to let me see it because he knows the pain I am in.

My positive attitude has plummeted into oblivion and being around happy positive people does not make it better, in fact often it makes me bitter.

In the grand scheme of things I know this is nothing but a bump in the road, one I will get over and past as soon as I’m able, but I cannot begin to explain how it feels. I cannot explain to you how useless and sad it makes me feel. I cannot put into words how the pain in my body translates to pain in my very spirit.

And often times talking to others with the same issues is just as damaging as it can be helpful. Everyone wants to help, which is sweet, but they all think they know the ‘key’ to what will fix you because it worked for them or it worked for a friend. How do you explain to someone that no two people are alike. Sometimes what works for one person does not in fact work for another.

I can’t argue with people anymore because they mean well and I feel bad trying to explain that I did this or did that but it didn’t work for me or doesn’t work in this case. Sometimes I feel them thinking or they will even outright say that I’m just not trying hard enough. I want to scream but it won’t do any good.

I finally gave in and let the doctors have their way. I went to dozens of specialists and had so many tests. Yet nothing. It’s just arthritis causing me all this grief and the only thing they can do is try to help me manage the pain. However, I can’t take heavy duty pain meds due to my weight so even that is limited.

So here I sit every day, trying to manage my pain the best I can with the tools I have the the limited abilities that I currently have. Here I sit feeling useless and depressed, praying to get over this bump and get back to being me. But in reality I have to first come to terms with and accept the ‘new’ me first and then I can work on the person again. Right now I have to find a way to get through my days physically and then emotionally before I can worry about my personality.

Forgive me if some days I’m whiny or complaining. I’m simply tired and beat down at the moment. Forgive me if I’m not that positive light at the moment, for I am simply in pain in all aspects of my self. Remember who I truly am and will be again and just be patient while I find my way through the physical pain that has been added to me and that I am realizing might be a part of me. Sometimes accepting what you have been dealt can be a huge help in living your life with joy. I was there and once I accept this new stuff I will be again. Acceptance doesn’t mean I give up or that I’m not going to try to find ways to alleviate the pain and illness but without acceptance I cannot even get there.