I’ve met someone. It has finally happened for me. I’ve found someone who is so right for me, and I’ve been keeping them to myself for the past few months. This person listens intently to every word I say. Never interrupts me, and wouldn’t even think about judging me. They are completely empathetic to my chronic illness, and disability. They even share my love of sports…… at least to some degree. This special someone always knows just how to make me feel validated and better about any situation I may have at anytime. I’ve gotta say it is a great relationship. The only thing keeping it from perfect is I pay them. I’d like to take this opportunity to introduce you to Jennifer, my mental health specialist.
I know some people put such a negative association with Psychiatry/Psychology, but that is just plain ignorant. Everyone at some time could benefit from someone to talk to. I can assure you I am benefiting every time I see Jennifer. There are so many issues that come with my Chiari the average person won’t and can’t appreciate what it is like unless they have experienced it themselves. I felt that being able to talk to someone who could understand me would not only help me but my family as well. Like everything I do, I did my research. I was picky, I didn’t just want anyone, I didn’t think that just anyone would be empathetic to my special circumstance. Enter Jennifer. Her bio on the internet told me she specialized in people who have become disabled, and that she is very much interested in working with such patients. It was a match made in heaven. I instantly got along with her (even if she is a byu fan), and I knew I was talking to someone who could really GET what I was going through. Just having someone there to make you feel like your feelings are important and real, no matter how foreign they seem to other people, is a huge help to my sanity.
I’ve written about a good deal of the struggles I face each day, but for the purposes of this post I would like to shed a little light on two more. One being a physical problem, the other an emotional one.
Having a chronic illness such as Chiari can be so hard on not just your body but your mind and heart as well. My Chiari has left me with an overwhelming feeling of failure. I’ve failed to find a decent neurologist for my care. I’ve failed at being the wife I want to be. I’ve failed at being the Mother I imagined I would be. I’ve even failed at being the Utah fan I want to be. Now I know, no one else probably thinks that I have failed,but who doesn’t hold themselves up to a higher standard? Trust me, I don’t expect to be perfect, my expectations were never that high. However, I still think I have failed. Over and over. In my mind I know that I am doing the best that I can, each day but in my heart I always come up short. These and all my other inner feelings at times can be crushing.
If I were to be completely honest, Id tell you that I’m in constant pain. It never leaves. Yes there are times where it kind of fades into the background, and I don’t notice it quite so much. Some of my pain I’ve been experiencing for years and I’ve built up quite a tolerance to it, so although it hurts it doesn’t slow me down. However the majority of time I am in a great deal of pain. All kinds of pain, joint pain, head pain, nerve pain, muscle pain, and pain in the back of my head I couldn’t even begin to describe. The severity of my agony is as diverse as the origins themselves. I can get a migraine with all the bells and whistles, (blurry vision, nausea, dizziness, etc.) that ranks a 7 on a 1-10 pain scale and the next day I might have one that feels like an 11. I do take pain medication on a daily basis, but it is only meant to take the edge off, so even then, I’m still in pain. Mark will be the first to tell you I don’t always deal with my pain well. I get really irritable and sometimes down right mean. I never intend to take out my pain on anyone else but it happens all the same.
The pain and my feelings of failure are just two examples of why I choose to get outside help dealing with my illness. It is difficult to handle everything that comes with my Chiari on my own and the assistance I get from Jennifer is just one tool I use. Before I decided to start seeing Jennifer there were things I have come to learn that help me that are just as important. Things that keep me from breaking down, or as like to put it “Freak Out”.
Reading books is one of them. As of today I have read 25 books so far this year, by the time I publish this, that number is sure to be higher. I already mentioned once that one of my goals for this year was to read 100 books. Why 100? Well why not? Reading is good for the soul. Reading is good for the mind. Reading is just good. Reading is the most preached about skill by our educators today. For as long as I can remember, I’ve always loved to read. I’ll read pretty much anything, fiction and non fiction. (I do however discriminate against Romance novels. I don’t like them. Nothing against those of you that do, it is just not my thing.) But just exactly why do I read so much? The answer is simple, reading a good (or bad) book lets me experience things I can’t do anymore. Losing myself in a book is a great escape from all the daily stresses I have. I also find it extremely cathartic. The reason I cry when I read an emotionally packed story is the same reason I cry at the same type of movies. I get to let all those emotions out. Sometimes a good cry is exactly what I need. I may not even realize I have emotions bottled up inside me until one of those moments.
If you know me or have read this blog before you know sports is a huge part of me and that it plays a vital part in my mental health. I wont go into all of that now because it seems like I mention it all the time. At any rate, if you are new to this site or would like to know more about what I mean please go read my post My Addiction. It was one of my first posts and I know not everyone has gotten a chance to read that one yet, so please do. You will probably be able to see where I’m coming from sometimes when I go off on some sports topic.
So many of my other coping techniques are not original by any means but, there may be one you might not have thought about before so I will quickly highlight them anyways:
- I like to do things with my hands. I’m not all that talented but making something always helps me feel as if I am worth something. I make baby blankets, I try to sew, and I love to cook and bake. Even cooking a meal for my family is so gratifying. Doing so gives me a sense of accomplishment that always diminishes (to some extent) those feelings of failure.
- Never underestimate the value of a hot bath. Like I mentioned before I get a lot of aches and pains and heat feels so good on them. Also I’ve perpetually thought that soaking in a hot tub was relaxing. Fill it with bubbles and maybe light some candles, close your eyes and just let the stress melt away.
- I adore my kids. At times those loud critters can be the cause or at least huge contributors to my migraines being as bad as they are, but they bring me so much joy. I like to just watch them sometimes, admire everything about them. Sometimes they will ask me to color or play something they know I can do, and I just cant help myself I am instantly blissful. They enjoy life to the fullest and they are my inspiration when things are bleak.
- Taking a night off and going out is easier said then done. It has gotten so hard to plan anything these days. How do I know what I’m going to be feeling like days in advance? I make plans anyways, hoping my friends or husband will understand if I have to cancel, or change the plans. Being a stay at home Mom AND disabled have me feeling so isolated at times that going out is more important than what kind of pain I might be in the following day. When I get the chance to go out with ‘The Girls’ it bolsters my spirit automatically. That feeling of being part of a group or even society is intoxicating. It doesn’t even have to be anything special either. Going over to hang out with my sister Kami, eating a meal with my nearly sister Ashley, going to a gym meet with my friends from SLC, or even going on a date with Mark. All of those are perfect. I’m not picky I just want some adult conversation.
- On the other hand I love having time for me. Just me. I have to be able to claim that sense of independence as much as I can. Furthermore, it is nice to have alone time, to contemplate life, meditate or even have a good cry. So whether it is attending a game by myself, going to the library to browse, or just being alone to take a breather, I enjoy these times.
- Obviously I love to write. Putting your feelings down in writing, in a blog or in my journal, gives them significance. It also helps putting those feeling to rest sometimes. If I’m really angry at something that happened, and I write about it, the feelings subside a little. I’m probably still angry about it but I’ve gotten the majority of it out of my system and I feel better. Writing is the ultimate outlet for any type of emotion, or experience. You can keep it as private or as public as you want but you still feel lighter, and you no longer have those feeling bottled up inside.
I know I’m probably missing some here but these are the ones that I know I use. I’m not perfect by any means. I still have my moments where I lose my patience with life or I take my pain out on everyone. What I am going through is down right hard. I don’t always know what it is I am feeling, not to mention how to deal with those feelings. My whole life has turned upside down and I am just doing the best I can to keep myself from drowning in it all. Every day brings a new challenge and a new opportunity to improve.