When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses

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When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses is a practical book for anyone who battles a chronic illness or chronic pain. Esther is an inspirational individual who has thrived in many aspects of life despite chronic illness, without a doubt she is a role model. Reaching out as a compassionate friend she gently teaches her readers about the grieving process and coping with chronic illness and chronic pain. She is transparent with her faith journey as well as her struggles and victories.

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Grief is an overwhelming aspect of chronic illness that threatens to take over. It breaks a person down. Those facing chronic illness and chronic pain grieve the person he or she was before the pain, their past, broken relationships, shattered dreams, and the person they had hoped to become. Chronic illness alters every element of life. At times, with the pain and additional symptoms, those with chronic illness don’t want to deal with the emotions. However, emotions are healthy and a part of life.

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Personally, the emotions tend to hit me like a ton of bricks in a delayed reaction. Grief with chronic illness was no different. I get consumed with daily life not processing what I am going through on an emotional level. Maybe you can relate. Once the emotions hit it is overwhelming. I officially got my diagnosis in my late adolescent years. I took a season to grieve all the things I missed out on like prom and mission trips I had planned out. That season I grieved the friends I lost.

I have worked through a lot of the grief but there is still some work to be done. Support is essential when working through it. This book provides a positive outlet for grief. One of my favorite things is that there are writing prompts to assist the reader in constructively working through emotions.

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Amazon description: “Chronic pain, illness, and disability take so much away. Sometimes it seems as though they take everything we have ever loved and held dear.

Our physical abilities and our jobs. Our current passions and future dreams. Our finances and our friends. Our sense of community and our ability to engage the world in ways we could before.

Chronic pain takes away our sense of self and who we always thought ourselves to be. How in the world are we supposed to deal with this fact?”

Make sure to pre-order your book here! In addition, feel free to drop by Esther’s blog: Life in Slow Motion.

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Lupus

“Yes, you need to know what Lupus is all about, but above all you need the strength and resourcefulness to battle with the wolf in its lair. The wolf will always be with you, but you can put a leash on it and make it heel.”

Lupus is known as the cruel mystery. People have heard of the illness before, but few know what it is and even fewer understand it. The way Lupus presents itself is as unique as our finger prints. Its complexity confuses medical professionals. Researches are working on formatting better testing, finding the cause of the illness, and developing better medication. Many aspects are highly controversial at this time such as causes of lupus and the diagnostic criteria.

So, what is Lupus? It is an autoimmune disorder in which the immune system is over active and confused. Those of us with Lupus are being attacked by our immune systems. It attacks anything from joints to skin to kidneys and everything in between. In a healthy person (or in someone who does not have an autoimmune disorder) the immune system fights off bacteria and viruses. It essentially works endlessly to keep you healthy.

If you don’t have Lupus I urge you to educate yourself, just a little. A little bit does go a long ways.

The search for a diagnosis seems like an endless and hopeless road. From my observations this is true when being diagnosed with any chronic illness, not just Lupus. The more I connect with those who are chronically ill, watch medical shows, or read spoonie stories I repetitively hear the horror of the individual searching for a medical answer. Many factors play into this inadequate testing, lack of knowledge in the medical field, bad doctors, the illness not progressed enough, ect..

If you are new to the Lupie World… Welcome. I know you’d rather not be a part of this ‘club’. I know that there are many emotions swarming you as you attempt to process everything. If you have been searching for answers to your symptoms, having a diagnosis is exciting and a relief in a way. On the other hand if you didn’t have any symptoms and no idea an illness had invaded your body I am sure this is utterly shocking. Where do you go from here? That is the million dollar question. A question that has a thousand answers but has no answer at all.

Allowing yourself to process that you have Lupus is important. I also advise that you educate yourself as much as possible about Lupus. When I got diagnosed I found the Lupus Foundation of America to be an excellent resource. Their webpage is great, in addition you can call them to ask questions. The Lupus Foundation also sent me information about treatments, living with Lupus, doctor information, and a magazine. I am so grateful that the Lupus foundation is the way it is. I cannot say thank you enough for the support and resources that I have received from them.

Life is never the same once you get a diagnosis. For better or worse things need to change. Most people need to adjust their life style, that is not saying that their life style was unhealthy. The life style of a healthy person is different then someone who lives with Lupus because the body needs different things. You will need to change your diet, how you exercise, and learn how to pace yourself. Of course, there is a good chance that you will need medication. Again I encourage you to do your homework. Educate yourself about the medication you are going to put in your body. Personally, I have a lot more confidence in trying a new medication when I know what to expect and the possible side effects.

Learning how to pace yourself is a huge challenge. Learning when you need to push a little harder and when you need to rest. Learning to rest is an obstacle for most people. Resting can feel like a waste of time. However, regardless of how you feel it is  a necessity. Your body needs to rest sometimes and that is okay. Resting can help avoid flare ups.

Lupus effects everything not just your body it effects your life and your emotional well being. It is essential to address the emotional roller coaster. Ignoring it and shoving it under the rug will only make things more difficult. It is tempting to shove the emotional aspect of Lupus under the rung most times, because there are so many other things demanding our attention. Depression and anxiety can be rooted in Lupus. Like any emotional illness sometimes depression or anxiety associated with Lupus can be treated with lifestyle changes other times medication needs to play a role.

Isolating yourself can be easy with any chronic illness. Many of us lose friends. It is difficult to keep in contact with people due to various symptoms, holding a conversation at times is utterly draining. Sometimes people avoid talking to others because of a rudely obnoxious lack of understanding. Even so, we need support. Isolation is not healthy for anyone. Having a support system is vital. In addition, I have found it helpful to find some support online through online support groups or pages an individual can like on Facebook.

I could go on for hours about Lupus and living with it. For now I will try to wrap it up so that this post doesn’t take too many spoons. I hope that you have found something in the post helpful. Welcome to the World of Lupus. You will be an amazing warrior who will demonstrate strength and courage daily. The road a head will be hard, but you have all the strength you need and you are never alone. Your story will give others the courage to keep fighting and to live their life.

How long did it take you to receive your diagnosis? What is the hardest thing about living with Lupus for you right now?

My favorite Lupus Resources:

http://www.lupus.org/

http://www.lupusny.org/

http://www.mollysfund.org/

Pages to like on Facebook:

World According to Lupus

Lupus and Me

Non- Lupus Resources:

http://restministries.com/

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

http://www.fightlikeagirlclub.com/

But You Don’t Look Sick

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“But you don’t look sick..” A saying that chronically ill people hear way too often. For those who have recently meet me I look like a normal 21 year old girl. But my family and church family are able to see the difference in me.

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The girl who stares back at me when I look in the mirror is someone I do not recognize. That girl is not me. She has a rounded face, pale skin, thinning hair, and tired eyes. I am…or in reality was a girl with dark olive skin, bight and energetic eyes, thin, and tall with thick dark brown hair that most people mistake for black. I have changed drastically sense becoming ill. I am not the same girl physically or emotionally. Not all the alterations have been negative. It is difficult sometimes to be so different compared to who I was before I became ill. Medications have altered my body somewhat, but the majority of the physical changes are due to Lupus. At times looking through photos is difficult. I like who I have become. But the physical changes are hard to grasp. My body doesn’t feel like my own… it is like borrowing something that doesn’t fit right. Appearance doesn’t matter as much as it use to. It is more about feeling healthy and functioning; living again. I try to focus on this and the hallmark of what inwardly make me, Victoria. Some days it works amazingly. With no make up and hair up I feel like myself and I feel pretty.  Other days, are more difficult after layers of make up and many spoons wasted tears of frustration wash it away.

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“But you don’t look sick..” is never a comforting phrase. People might think it is a compliment, but it is not. It makes us feel like you do not believe how sick we are. Our outwards appearance, does not reflect the war going on inside of our body twenty four seven. Thankfully the destruction is not visible.

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Those who are chronically ill learn all the make up, clothing, and hair tricks. She learns to fake a smile. To be a ray of sunshine. To pretend to be a healthy girl. Behind closed doors, everything is different. The make up comes off, the hair goes up, pj’s on, and the tears flow. With her head buried in her pillow she wonders how she made it through another day thankful no one saw though her mask. Insiting that she doesn’t look sick only adds to her struggle. Your words weigh more then you know.

Your world drastically changes in every way possible when you are chronically ill. It is like living on another planet in comparison to how thing were when you were healthy. Adjusting is difficult. You need to be patient with yourself. Allow yourself time to adjust to all the alterations your illness has imposed. Remember, that there is much more to you then the person looking at you in the mirror. Yes you might look different and that is okay, you are still beautiful. In addition to physical beauty, you have a stunning personality.

How do you cope with the changes your illness has caused?

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