The Emotional Ups and Downs

For those who have been following my blog, you might sense that I have been kind of frustrated lately. Ma, you don't need to read this post (LOL), because you have listened to me vent. I'm sorry if I have stressed you with my emotions going up and down lately. But, thanks for listening anyway!

I'm not trying to make this blog negative. It is a blog to help people who are going through similar. If you are going through similar, then you probably encounter some of the emotional ups and downs. If you don't, that's great. But, this blog also helps me get my STUFF out. So, I can't apologize for that. Thanks to those who support!

As most of you know, being physically sick can also take an emotional toll. Trust me, I am thankful and grateful for what the Lord has given me. While I pray for healing and wish things would be better, I do know I'm blessed.

However, I have ALLOWED a close relative to get the best of me. I love this relative very much. But, some of the sarcastic, underlying comments they have been making have been surprising and very hurtful. I want to say,"Yes I know it could be worse. Yes, I know that such and such just passed away, but I'm alive. The Lord knows I'm thankful..."

I'm so trying to be repectful, because this person deserves my respect. (Anybody who knows me and is reading this, please do not ask me the "who" question--thank you very much).

But, it's like this relative shows concern for my situation but then turns around and makes an underlying comment that makes me feel like they feel that I'm complaining or ungrateful when all I've ever been is sympathetic and caring towards them and their issues. I just don't get where it's coming from. I have a few other relatives/friends who don't get it. But, it hurts more when the person is "close."

Trust me, I don't go around complaining about my pain constantly. But, if someone asks how I'm doing I am more honest about it than in the past. If I'm in pain, I do say so. I'm not looking for sympathy. I just feel it's best to be honest.

Another reason why I feel honesty is best is because I've done the "I'm feeling okay thing" when I'm really not feeling okay. Then, you get responses the next time you're not feeling so well like, "I THOUGHT you were feeling better."

That's when I want to say, "Hold up, I have an illness that causes pain on a daily basis--some days worse than others." But, I shouldn't have to explain that. What I'm finding is that some people want you to say you're good just to make themselves feel better. To me, that's selfish and irrational.

As I know, I have to develop a stronger armour. I cannot keep going around letting others who make unfounded, ridiculous comments bother me. If anything, this will definitely make me a stronger person. But, on the flip side, I am finding that I am becoming more antisocial so that I don't have to deal with...I don't want to be like that. I must find a balance.

I will continue to pray on it as usual. I know life is too short to get agitated by people. I am so thankful for those I can depend upon. I am also thankful for those I love who don't quite get it. I must try to maintain my patience and try to lead by example on how to be a sensitive individual. The Lord did bless me with that virtue and I am thankful for it.

________________________________________________

"Peace I leave with you...
Do not let your hearts be troubled,
neither let them be afraid."

John 14:27

The Librarian

I was at the library today. I was waiting for assistance from the librarian. I saw these teenagers who were laughing and moving their heads funnily. So, at first I wondered if they were laughing at me since my head does move involuntarily due to the Dystonic spasms and I do shake sometimes.

The degree to which my symptoms appear depend on the day--some days it's quite a bit and many days it's hardly noticeable to anyone but me. Some might call my thinking they were laughing at me being paranoid. I just call it being real, because I do look 'different' when my neck is spasming or I'm having other issues related to my illnesses.

Then, I realized they were laughing at the librarian who was helping them. This lady was sitting at the computer. She has a noticeable tremor where her head and other body parts shake, but it's especially her head and neck. I noticed it before and thought that it could be a tremor or an early stage of Parkinson's--hopefully not.

Anyway, I said to myself, "Kids can be so cruel." Then again adults can be cruel too. I've encountered both. We can talk about sensitivity until we are blue in the face. After a certain point, you either have it or you don't.

I wondered if the lady who was being mocked realized she was being mocked? I wondered if she internalizes the cruelty of others? I wondered if she had developed a strong armour to resist the affects of the ignorant? I hope she has a strong armour especially since she works in a public setting. I'm in the process of developing a stronger armour.

I've talked to this lady several times. She seems very pleasant and nice. I'm glad that she's pleasant. She hasn't let herself become bitter due to her illness or issues. She was probably a pleasant person before she developed these issues. And, that person is who I see.

This morning I viewed a post on My World According to Lupus (You can connect to this blog; it appears on the right of my blog under "Blogs." Lupus Girl discusses how stress can help to trigger sympoms in people who have chronic illnesses. She also mentions some other very important things in relation to chronic illness.

Anyway, I have been feeling a bit frustrated lately. Sometimes, I feel very misunderstood. Perhaps, I do expect too much of people sometimes. My sister once told me that. And, when your expectations are not met, sometimes that does hurt. It might not be right...But, that is how I feel.

After reading the above blog this morning, it was ironic that the writer hit on many of the things I am feeling right now. So, I ended up venting on Lupus Girl's blog. Thanks Lupus Girl for allowing me to vent. I needed it. God Bless!

Here is what I wrote:
OMG--Alot of what you are talking about, I plan to discuss soon on my blog because I am feeling some of these things like right now.

I know the power of stress and it isn't good when you have chronic health issues. But, currently I am not under too much stress...some, but not too much.

What hit me most is your mention of how others don't get it. I often experience this, because my sometimes "invisible illness" is quite painful even when others can't see my symptoms.
I really need to work on myself in that respect and know that I can't necessarily expect others to understand all of the time (even though I would).

I must remember that no one is perfect. Although I know I have other faults, I happen to be empathetic and not everyone is empathetic to the same degree. I have to accept that and not let it bother me. I am working on it.

And the part about the doctors saying well "that" couldn't be a trigger. Yes, I want to scream, "Certain foods, stress, medications, certain activities, etc. can be a trigger--Duh!" I am so sick of doctors making statements that they cannot fully back up. I'd rather they just said nothing instead of making incorrect blanket statements.

With all of that being said, "Lord, I am grateful for the support I do get. I do have many supportive people in my life." I just needed to get out my frustrations--that's all.

Update: Wal-Mart Fiasco

This week, I mailed my letter to the CEO of Wal-Mart, Mike Duke. I also mailed a copy of the letter to the store manager of the Wal-Mart in which the unfortunate incident took place.

I feel that I am speaking up for myself as well as for others who have "invisible" illnesses and/or overt disabilities.

I made it clear that the Wal-Mart greeter has no right to judge whether or not someone needs to use a scooter. I also made it clear that Wal-Mart should discuss this type of situation during their "sensitivity" training.

I further explained that employees of Wal-Mart (and employees of other public places for that matter) must be careful in how they treat customers with disabilties, because there are potential legal ramifications for discrimination/harassmant.

Hopefully, I will receive a nice apology letter. At the very least, hopefully someone in H.R. will be responsible for paying closer attention to matters of sensitivity.

Fiasco at WalMart: "Why Do You Need to Use a Scooter?"

Last summer, I had just been diagnosed with Dystonia (neurological disorder that causes pain/spasms in my neck and back). I was in the beginning of my treatment and frequently in severe pain. So, I did not go out that much. Now, I am in some type of pain daily, but the range is mild to semi-severe. The botox injections I get (supposed to get them every three months), have helped me to function better. Now, I have more better days. So, now I get out a little bit more.

On Tuesday, I was the victim of what I guess I would call "reverse discrimination." I went to WalMart with a friend who has MS. Often, she uses the scooters when she visits stores. That day, my neck and back were on fire (caused by Dystonic spasms). So, my friend encouraged me to use a scooter.

To be quite honest, I am still very self-conscious about my illness. I worry about my head shaking, the stiffness of my neck, etc. Often, when I go out in public, I am already a bit uncomfortable--especially if I'm having a very "symptomatic" day. I'm working on not caring about what others think. Fundamentally, I know that I shouldn't care. But, it's been a struggle. Some people can be very cruel and uncaring.

With all of that being said, although I decided to use the scooter, I knew that I would be a bit self conscious while riding throughout the store. Although I am in pain frequently, my symptoms are not always obvious. I feel the pain/spasms, but my issues can often be "invisible" to the naked eye. Plus, I work hard to look as normal as possible (that can be exhausting--trying to hold your neck straight when it wants to pull to the right).

Once I decided to use the scooter, I made a the comment, "I hope no one says something about my being on the scooter." I did not want to deal with any drama. Perhaps I should have kept my mouth shut. "Why did I have to go and say that?"

My friend gave the perfect answer "It's not any one's business. You need it. So, use it." She was right, I decided. So, she chose one scooter and I chose the other scooter that was available.
My friend got on her scooter and it started with no problems. I was lucky enough to get the scooter that did not work properly. I got on and nothing. So, my friend asked the Walmart Greeter to help us. Like at most WalMart Stores, the greeter was an elderly lady. Once my friend summoned her for help, she came right over. I was sitting on the "dead" scooter.

The greeter's first words were "What's wrong?" Already on defense, I knew what she was referring to...and it wasn't the scooter. My friend assumed that the greeter was referring to the scooter. Nope. Her reply was, "What's wrong with her?"

I should have ignored her, but I responded to her question. I said, "Apparently, I need this scooter because of an issue that I have." So, she fiddled with the scooter to try and get it to work. While trying to get the scooter to work, she made several more inappropriate comments including, "You look too young," "You look like a teenager," "I could get in trouble if you're on the scooter, because people who are crippled need the scooters." She kept on and on.

I got angry. I didn't curse (I was proud of myself) or yell. I probably gave her more respect than she deserved, because she was elderly. But, I told her "You never know what someone is going through." I even told her that I had a neurological disorder that caused bouts of pain. But, she kept making remarks. My friend stopped me from responding to this woman by reminding me that I did not owe her an explanation. After I told the lady how her comments were very inappropriate, she walked away.

Emotionally distressed and embarrassed by what should have been very simple and uneventful, I wanted to speak to a manager. My friend summoned a manager. The manager came over to the scooter area. We explained what had happened with the Walmart Greeter. The manager was very apologetic and kind. She said that anyone could use the scooters without question and that she had been on the scooter several weeks ago, because of a broken leg. She helped us to get the scooter working properly. As we were pulling off in the scooters, I saw the manager approach the greeter. I could tell by the greeter's body language that she was fiercely trying to defend herself. She didn't look too happy . I could tell that the manager had been firm with her. That was a good thing.

Shortly after our departure, the scooter stopped in the front of an aisle. I was still hurt and frustrated and in pain. As we were sitting there, looking for help, my emotions surfaced. The frustration, the embarrassment, and the underlying pain came to a head. I sat there and cried. I couldn't hold it back. Those tears had probably been there all day. The Walmart incident just unleashed the floodgates. My friend was very understanding--she's been there, emotionally.

I decided to notify the manager that the scooter had stopped in aisle (?). She told me that another scooter had been returned by a customer. I thanked her, but I decided to sit in the car. I had had enough for the day. I got in the car and called my Mother. I told her about the WalMart incident--I needed to talk and get it off of my chest. She felt my pain and tears. She wanted to make it right. She asked, "Did you get her name?" Through all of the turmoil, I did not get the greeter's name. Later, once my friend came out of the store, I learned that she had gotten the manager's name and the greeter's name. I guess she had looked at their name tags. "That's pretty good," I thought.

Perhaps, I will write a letter to WalMart. I feel that it's my duty to bring this to the attention of the WalMart headquarters. I'm sure this type of incident happens all of the time and it will continue to happen. Unfortunately, discrimination occurs everyday and in many forms. But, I can tell my story. There needs to be more sensitivity in the world. Just because someone doesn't look ill, it doesn't mean that they are not ill. There are people walking around with cancer, as my Mother reminds me, who look perfectly fine. Just because you look young, it doesn't mean you are "young." Besides, unfortunately, young people get sick too. Illness has no age. So, wheelchairs and scooters aren't reserved for the elderly or the obviously maimed. Others need them too!

What the greeter did not know is that I am 36 years old. While I'm not old, I am certainly not a teenager. In the past, I have gotten into an altercation with someone, because they thought I was a teenager (A few years ago, I was at a swimming pool with my nephews and this nosy lady thought I was a kid and started questioning me, because I wasn't with an "adult." I often say, that even with my physical ailments, the Lord has blessed me with looking young for my age. Even though I've had a few incidents because of the blessing, I do hope that I continue to receive that blessing!

What would I say to the Walmart Greeter? I would tell her that she needs to be more sensitive. I understand that we have a few people who might abuse the system (i.e. park in handicapped parking spots when they are not handicapped). Obviously, this type of behavior makes it bad for those who need these services. However, you CANNOT judge others just by their appearance--that's called discrimination.