Saturday, July 23, 2016

A Tale of Frustration

Hi, it's Trevor once again, sharing our monthly tale. This time is going to be a bit different. We warn our readers, that it may be a bit raw, as honesty can sometimes cause some people to become uncomfortable. That's okay, because we all need to be awakened at times.

Brenda has been going through some tough struggles as of late. As you know she has lived with rheumatoid arthritis (RA) for over twenty-five years and is almost an eight-year brain tumor survivor. That is a lot to deal with. Imagine, dealing with most of that on your own? Brenda does and it is difficult at times. We are not saying anything here to make anyone feel bad. We are simply bringing out some facts here.

Brenda has not been feeling that great. Our weather has been hot this week. Her fingers are so swollen and she pretty much has been hurting all over. She continues to do her walking to and from work, all five days. I am so proud of her. Yes, she walks in that hot weather too.

Her fatigue is out of control. Last evening she was in bed before seven o'clock. On a Friday night, that is crazy. Her work week is over and she should be doing something fun, not heading for bed, because of exhaustion, but she was.

Her blood pressure is finally at the point, where she thinks this new medication is working. Her hypothyroidism has changed in that she needed to be put on a higher dose. She doesn't just deal with RA and her BT issues. There is a lot more behind the scenes. I am sure it is that way with many people who live with chronic diseases.

Brenda somehow, does not feel like she belongs in that realm with others. It's more like a country club and you only belong, if you share every aspect of living with your chronic illness. Brenda does not want to do that. It's not healthy and there is more to life and ourselves, than what we struggle with every day.

Brenda wants to be included in fun activities. She went to a rock concert this summer, which she enjoyed so much. Yes, she got up and danced. She ended up paying for it, later in the week, but she needed to get out and have some fun. At the time, she wasn't thinking about what would happen in the next couple of days. She was living in the moment and having the time of her life. Isn't that the title of a song? BOL

Brenda will not be going anywhere as far as a vacation is concerned. She has managed to take a few days off, or have mini staycations. She can no longer travel in an airplane, as they cannot seem to get to the bottom of her vertigo issues. This is frustrating for Brenda, as many other things are.

She has been working on writing projects and doing much more journaling, as of late. Writing is a coping mechanism for Brenda. Even though it bothers her fingers at times, she feels it is paramount to keep doing it, to help with exercising them.

Brenda has been doing some decorating in her apartment. The living room was first and now she has four pillows with golden retrieves and poetry on each one. Why am I not surprised that she picked that particular breed? BOL The poetry has a special place in her heart. Her mother, who I had the great honor of getting to know, wrote poetry. Neither of us knew this, until after her passing. She did however, make me a dog collar, right before she became ill. I still wear it and treasure it.

Brenda has been missing her mother so much. She has so many things going on and she could always talk to her. She would really like to be able to share all of the wonderful things that have been going on. It seems like nobody wants to hear about it. It comes across as bragging to some. I am so doggone proud that Brenda is going to have a book published where she is a co-author. That is huge in my doggie book. I hear that good old Trevor here, is even mentioned. That warms my golden heart. BOL

Life is full of challenges, but it can be great at times too. So much sadness in our world today. We need to be able to escape and find what fulfills us. Dwelling on our problems all of the time, is not the answer.

Brenda enjoys her walks so much. That is one thing that she can continue to do, to help keep her joints strong and flexible. With RA is it important that you keep moving, even a little bit. If you can only walk down the street or around the block, that is okay. You are doing something. If you can only exercise while sitting in a chair and cannot get down on the floor, that is okay. I will let you all in on a little secret. Brenda cannot get down on the floor to exercise. She lives alone and to chance that and not being able to get up, would not be good.

You find what works for you. She can exercise with lying on her bed and doing full range of motion. She has done this, pretty much every day for the years, she has lived with RA. It is something. Don't beat yourself up, for not being able to do it all. Brenda becomes frustrated, but she keeps telling herself that she is doing something and that is okay.

When you live with a chronic illness, it is sometimes hard to feel like you fit in. You are fatigued and you hurt all over. You want to get home and crash. It's frustrating, because Brenda wants to be able to do fun things and not always having to decline invites.

She had plans to possibly go to the mall today and work on her project for another room. She was too tired and hurting so much, to even consider it. She ended up taking another nap after lunch, as she couldn't even stay awake while watching a little TV.

She had an invite to dinner with her girlfriend this evening and had to decline, as she is in so much pain. She understood, but Brenda would really like to have gone. You have to be smart and not push yourself, when you are hurting. She has been moving around the apartment, but not much else today.

We are hoping tomorrow will be better and perhaps, she can do what she had planned for today. You always need hope, that it will get better with time. Brenda tries not to beat herself up, when she has to change her plans or decline invites. You need to be flexible and have common sense, when it comes to living with a chronic illness. Those who care, will truly understand this. She has encountered the opposite of those who take it personally, when she has had to decline. If she went out, even when she did not want to or felt she couldn't, then she was accused of being crabby, if she ended up sharing, that she was not feeling well.

Now you tell me, if you had a headache or did not feel well, would you be happy to be forced to come along, just to not hurt the other person's feelings? I think you might be a bit crabby as well. Stop and think what that person might be going through. They are not living with a chronic illness, to spite you. Brenda fights every day. There are things that you can't even begin to imagine what she goes through on a daily basis. She has listened to woes and complaints from others, but when the tables were turned, some turned a deaf ear.

They are no longer a part of her life. Friendships need to be a two-way street. There is a saying, "In order to have a friend, you need to be a friend." It goes both ways.

Isolation is a big part of living with a chronic illness. It seems like Brenda experiences that more and more. When you are constantly barraged with being ignored, when everyone else is greeted. Yes, it has happened. It hurts and if those other people were really your friends or had your back, wouldn't they do something about it? No, they let it happen day after day. It has even happened in settings where people are all dealing with chronic illnesses. She has been completely ignored.

When you live with a chronic illness, you definitely possess less energy. If you go to all of the trouble of doing something for someone, only to have them say, "I don't need this information now." Why did you ask for it, in the first place? Energy is not something that just magically appears. There are times you may have plenty and then there are other times, where you can hardly wait to crawl into bed.

Brenda no longer apologizes if she cannot handle a task or do everything. Realistically, no one can do everything. Brenda is involved with one source of social media. That is Facebook. She realizes, that she might get more exposure when it comes to advocacy, if she would participate more, but she simply cannot handle the rest. She works forty hours a week and that is about all that she can handle. She is grateful that she can go to work early, as that is when she is at her best.

Brenda didn't ask for any of this to happen. There are people out there that actually believe that we create our own chronic illnesses. If that were true, shouldn't we be able to cure ourselves also? BOL

Brenda works hard every day to fight. If that means a day of rest, she is still fighting. Common sense comes along with that as well. You need to know when to rest and what you can handle. You learn that as the years go by. Twenty-five years is a long time to be living with a chronic illness and Brenda has done the best she can.

Her barometer head has been something else this week. Yes, there is such a thing. Anyone who lives with arthritis knows, when the weather is going to change. It's that way with brain tumor survivors as well. Barometric pressure and humidity, have a lot to do, with how Brenda may be doing, on any given day.

It's been a frustrating summer for Brenda. We have had some wacky weather and each time, she has paid for it. She has been in a lot more pain. Just because you take something every week, does not mean it automatically goes away. The pain is still there. Pain has many forms. It does not have to be just with living with a chronic illness. It can also be the isolation of having to deal with all of this alone.

Fatigue has been a big factor with Brenda. She is hoping in time that the medication for her hypothyroidism will level off and she will start to gain a bit more energy.

Long range planning is not really ideal for Brenda. She never knows how she will be feeling that day. You take it day by day, and moment by moment and hope for the best.

Until next time, this is Trevor, signing off.