Saturday, March 29, 2014

Mental Stress and Chronic Illness

"Keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in."

One of my facebook friends has a page called Rheumatoid Arthritis Support and for some reason there was an article in my news feed today about stress and chronic illness but she had this quote written above the article which I assume she wrote. Reading this it was like a ton of bricks fell on my head. Truthfully I never thought of stress like that before. I thought about it and I thought to myself that I always felt so different than the healthy world and I could never be like the healthy world. Myself or anyone else who is chronically ill can probably associate what I am writing without having to explain it. I'm pretty sure the healthy world cannot make any sort of connection to this at all. Well, unless they may have been ill at some point in there life and can remember back to how different life was at that point in time, now imagine living that way everyday and trying to fit into the world. It's damn hard. You fake your way through. It's funny because I am sure most people look at me and think there is no way she isn't "normal." I laugh. I take care of myself. I run around to store for things when I have the energy. I try to live like the rest of the world but it isn't easy living and having to be an actor when you see people. 

The stress part. Wow! This is another area I never thought about because I always thought most of my stress was from the illness, which it was/is, but now as I think back I had/have many of the same stresses most of the world has. How can that be? I don't work and I know most people wonder what in the world I could do all day at my age without a job or anything else to do for that matter. Let me tell you this is where my stress is a little different. I don't understand work stress as you do but you also do not understand my stress as a chronically ill person. Plans come and go. I stress and wonder will I have the energy to go? The amount of energy it takes to socialize is exhausting to say the least to the chronically ill. I can go somewhere and within an hour or so, depending on how many people I talk to, I am ready to leave. Tired/fatigued as I watch the rest of the room party and keep going without a clue as to what I am going through. It is horrible to say the least. The realization that I have finally come to grips without feeling guilty about leaving early is freeing and causes me much less stress. I have learned not to care anymore. I do what I can do and I am honest about the things I can't. It is a way of life for me now, for us. Rich included. This part of the stress is hardest for me because Rich is a very social person and the stress of weighing him down wears on me. He never says a thing and is always ready to do whatever he has to for me but for me it isn't fair for him. I wonder if that is a stress I will ever get over?

I have come a long way baby! I know the not caring comes with age but with chronic illness it is different. It is just as much an inside job as an outside job. The realization hit me this morning that I am doing a much better job with each passing year accepting it is what it is and it is OKAY! Man, it feels good to write that and really mean it!

God Bless!


Tuesday, March 25, 2014

It's an Inside Job

Here we are pretty much in the same state of affairs as we were when we first moved into Steph and Vinnie's house. It is going really well and I am thankful for the closeness we can share, not only in the space we live in, but in our hearts. I'm not sure how many kids would allow their parents to take over their basement, a bedroom, bath, and at times their kitchen. I'm not sure if I could do it as I like my space so for that reason I feel like we are intruding while Steph and Vinnie assure me we aren't. I even went so far as to look for an apartment for this very reason. Truthfully? I miss having a kitchen it is where a wife/mother spends 90% of her life, at least in our home. Then I wonder to myself would getting an apartment be more for me or for the reason I am feeling like an intruder. I never thought not having a kitchen would be that big of a deal but it is. I never thought be somewhat homeless would be so hard and dare I say almost depressing but it is. I feel like I am in the bottom of a pit stuck and unable to find my way out. We have been here for almost three months now and we were hoping by now we would have at least started on building our home. The weather here in Michigan has been brutal this year to say the least so being able to dig a hole for a basement is impossible. There's a lesson in all of this...right?
We are beginning to see a little light at the end of that tunnel and feel breaking ground might begin here in a month or less? It also depends on the load limits on the roads. With the ground becoming warmer there are weight restrictions as to how much weight a truck can haul so in turn the building supplies halted not only for us but many others. I wonder to myself how many other people building are living in a basement? Pretty sure not many.

I started a so called diet but I really want to say a new way of living. This time is it. I am not going to lose it only to gain it back once again. Change. Who likes it? I already feel like I am so unstable living in limbo. I feel stripped of all the "things" that matter to me. Oh believe me it's not much but "things" none the same. The things I miss are the art the grand kids made or something special one of the kids gave me as a gift.  You know the "things" that you look at that make you smile and in an instant you can remember who it was from and when and why they gave it to you. Those are the "things" I live for. I do have a large picture of the kids here that they gave us at Christmas a few years back. It hangs in the bedroom by the computer so I can look at it everyday and remember the moment they gave it to me. I had no idea what so ever they had it taken of course the tears came. I love that memory. I love those people. They keep me going. The text I just got from Steph telling me when we lose weight we are both going on a shopping spree. Time together that has nothing to do with clothes. Moments in time we can never get back. I thought not having a place to call our own would be the hardest part mentally for me but now that I started this weight loss journey I think my worst enemy is my mind. You begin to filter more than just not having a place to call your own. You begin to go internally and pick yourself apart and at times others and past life circumstances. All the mindless eating I did in the past that covered up past hurts or past relationships that will never be mended. Life is what it is. I don't think we will really ever have it all figured out but someday, just maybe, we will. All of this piled on top of pain that never ends. Fatigue that is unbearable to say the least. It's a wonder a person can stay sane but I will. Did it before I'll do it again. I do believe it is in you all along it's just that sometimes you forget it and you have to be knocked back down in order to get back up.

In the end I don't think a diet is going to make my life perfect in fact I know it won't. I've been here before, lost, and still felt like a fatty. It's all internal. It's all about the goodness we leave wherever our feet might land even if we don't get it back in return. It's trying to be nice to the people in your life who make it very difficult to be nice. It's being kind to the lady in the store who makes some snide remark for some reason you will never understand. You smile and you move on. I am learning more and more with each passing day that most of the people who treat you like you are a nobody really are not happy with themselves. It really does have nothing to do with you. You live your life the way you want. No one has the power to dictate how you live or how you don't live. So, as I strive to be more healthy it isn't only an outside job it is an inside job. A job that only I can do and I will do. As Jim Carrey says in The Mast movie, "Somebody stop me." I'm not letting it happen! You?

God Bless!


Tuesday, March 18, 2014

Wake Up Call

L'Wren Scott. Does that name mean anything to you? Tom, Dick and Harry. Do those names mean anything to you? I watched the morning news this morning as they reported on the suicide death of L'Wren Scott. I had no idea who she was until last night when I heard she committed suicide. Apparently she was a designer so it is no surprise I had no idea who she was. The news reported of the suicide as a hanging on a door knob, who knows if that is true because you have to take everything the media reports with a grain of salt, either way she died a senseless death. They also said she may have been six million dollars in debt and didn't know if that could be one of the reason she thought death was the answer to ending her financial problems. I thought to myself how can money do that to a person but when you live a mediocre life you more than likely will never be able to figure that one out. Money to me is not that big of a deal food, shelter, a few extras is enough. I always wonder about the lives of the rich how things and trips and all the stuff that they think makes them happy really does. Then this happens. I wonder if she searched through her short life with money trying to buy the happiness when she had it all in the palm of her hand already. I wonder why she never stopped to realize it. Mick Jagger was her boyfriend. He has money, so I think. Why didn't she go to him and ask him to help her? Or even better why didn't she go to him and tell him she was struggling? Why do we hide our pain? The media also reported what a wonderful, kind person she was. Everyone said she was so gracious and giving which also led me to think of how we can fool everyone around us. How many people do we come across each and everyday that are suffering in silence? Do we ever take that minute to ask how someone is really doing? Do we ever read between the lines and ask, "Are you sure?" Nah we don't, we are too busy for that. You know what I mean. Just like the people whom I have heard say, "I saw her in the store but avoided her." Hummm really? Are we in such a sad state of affairs that we can't take a minute to care about someone? We don't have to fix them but we can listen. It isn't that hard. I wonder about all of L'Wren's friends who are telling the media she was so kind and seemed happy. I wonder if they ever took that extra minute after asking her how she was and gave her the chance to say, "NO I'M NOT FINE! LIFE SUCKS RIGHT NOW AND I DON"T KNOW WHAT TO DO ABOUT IT." Just that simple extra five minutes or an hour off someones busy selfish schedule may have saved her life. 

In all honesty I can write this because I know what it is to be the person that gets asked, "How are you doing?" I am the person who says, "fine," because I know people don't care. Brutally honest? Yup that's me. You see, when you are on the inside looking out at life you can be brutally honest. It feels like I live in my own little world while the rest of the world is out there living in that great big world. People looking in at me like the boy in the plastic bubble. Do people care? Yes, but it is a surface care. I'm not complaining at all it is fine. I have Rich he is my rock. A few close friends I know I can go to but who wants to bother them with my stupid stuff? In all honesty I may know how L'Wren felt just different circumstances and I'm pretty sure she felt the same way, who wants to hear about my stupid problems? 
The whole point of writing this is not to help people understand how it is to be sick, physically and mentally, in a healthy world but to hopefully help people realize even the healthy looking people suffer. Take a minute, a second. Don't be the person who is talking after a suicide saying what a nice person someone was. Watch their body language, look in their eyes. You can see a lot of pain in someones eyes if you look close enough. We don't do these things enough. We are a world that has become to busy to care. Too busy checking our cell phones. Too busy being busy doing nothing. It's absolutely crazy. It's like a madness that needs to stop. If anything I hope this is some sort of wake up call to all who read it. I hope if there is someone around you today, tomorrow, this week or whenever, you are the one. The one who can read between the lines and save someones life because I know you can!

God Bless!


Friday, March 7, 2014

Chronic Pain for Idiots (the yellow book kind)

I just read an article called How to Understand Someone with Chronic Pain. It made me chuckle like most things do in life when it comes to living with pain but this chuckle was different. I'm not sure if it was a understanding chuckle or some sort of other chuckle. The explanation of understanding chronic pain on a piece of paper seems so much different then when you are actually living with, or maybe I should say in it, chronic pain. The link is above if you want to look at the actual hilarity of it all. I mean that in the nicest way.

It's the basic. You know they make it look like the person in the pictures is dying and not really enjoying life at all.  I must disagree with that part of it not everyone living with chronic pain looks like they are living with chronic pain. I know when I go out no one can tell anything. We are the great pretenders because who wants to hear about our pain? The actual written parts of the article were pretty much spot on and every word I read was so relatable. In fact the whole time I read it, as I chucked, I thought to myself yup, yup, yup, uhuh. It just makes me wonder if a young person or anyone who doesn't suffer in pain 24/7 would really be able to understand any of the article as they read it. You can read all you want but as I always say until it happens to you, you have no idea. When I read the article I thought to myself hummm we need a yellow book called Chronic Pain for Idiot's. I could write it and I would be happy to sit hours with others who suffer and get their view on living with chronic people. The real people, the people who live it, not the people who study it and think because they know all the book work on chronic pain that they can write what we need to do or not do to make it better. The real people, suffers, who day in and day out cry, laugh, try not to complain, the ones that do complain, the ones who are bed bound, and the ones who are not. My list could go on and on but you get the picture. I'm pretty sure a study of the "real" chronically people in pain would take a very long time to write. Between deciphering all the different types of pain people live with, not to mention the emotional and physical toll it takes on each person seperately. It would take so long to interview and write all the stories because there is no way you could write about one person in chronic pain and lump everyone into the same big pile of facts from that one person. You can take two people with neck pain but they both experience it differently. Actually you could take 1000 people with neck pain and I can bet that same neck pain would affect each of them differently. This is where all the people who say or write things on chronic pain and do not live with it have no business doing so. Have they gone out and actually talked to people who live in their own pain? Pretty sure they haven't. I take offense every time I read or hear someone say something that is a cure or tells us we will feel so much better if we only..... My question is how do you know for a fact that is going to work for me? For my pain? Right now I am focusing more on the pain but I'm pretty sure I could write a whole other yellow book on the emotional toll chronic pain inflicts on a person. This may even be a much harder and deeper subject to talk to each individual about because we all experience that side much different also and for some this side is worse than the pain itself. Some of us are fortunate to have a close few who do get it, our pain to some degree so our emotional well being is at a level where we are happy and can function and not have to deal with the same things that others who have no support deal with. It has to horrible to deal with both and have no support. Then there are jobs and taking care of a home. Young mothers who must take care of children while hurting but hey the kids still get hungry, they still have to be changed or run from here to there. I could go on and on and on. It really could never end when you begin to piece ALL of the many pieces of chronic pain together. I understand because I live it so when someone tells me they are in pain I can go there in a heartbeat. I don't have to wonder how it is because I already know what it is doing to that person. no, I don't understand their pain, their own pain, but I understand the big picture. I just wish more people could understand more than what they believe is on the surface of living in chronic pain, that's all.

God Bless!