Too Tired to Fight

My heart is broken into a thousand pieces as I write this. I am a part of an endometriosis support group on Facebook where 2000 ladies can come find support, encouragement, and support. Today we gathered together in prayer for one of our sisters who decided she couldn’t live with the pain anymore and attempted to take her own life. She survived but is not in a coma with the prognosis unknown. While I may not have ever met this sister in real life or not even know her name, I know her as we have traveled the same road that binds us together as endo sisters.

 

I grieve for her life as at her young age, she left like it would be better to end her life than to continue to live with the pain. I grieve for her family who are holding her hand praying that she wakes up and wondering what they could have done to prevent this from happening. I grieve for our group of sisters that come from all different parts of the world and from all walks of life to become a family and feel the pain of loss knowing how easy it can be to find yourself in that place where you question whether or not is worth it to press on.

 

What most people don’t realize is that chronic illness is not just a physical challenge. Illness affects all areas of your life from physical to emotional to social to spiritual and if you’ve never faced it you may not know how exhausting it can be to continue fighting.

 

The physical pain can be bad enough on its own and if you couple that with medications that are heavy on the side effects, hit-and-miss treatments, and hearing “there’s nothing we can do” one too many times, it can be hard not to give up the fight.

 

I think the general public may not see the emotional side of an chronic illness the same way they would for a person facing a terminal illness like cancer. Guilt is just one of the emotions that can be tied with illness. You feel guilty for not being the wife/mother (husband/father) that you think your family deserves or that your family would have if you were not sick. You feel guilty that you are not contributing financially the way that you would if you were not sick (or your being sick is a drain on finances). You may be made to feel ashamed of your illness. Maybe you’ve got a family member who doesn’t believe endometriosis is a “real” disease and therefore its all in your head or you are exaggerating the pain. You may be angry or overwhelmed or depressed when you think about your life with chronic illness. The emotional fatigue can be very overwhelming and sometimes might be harder to face than the physical fatigue.

 

Spiritual fatigue also plays a role in your overall health as someone with a chronic illness. You may question where is God in all this. Did God cause you to be sick or was it something you did? Why does these illnesses exist in the first place as they cause so much pain and destruction? I think facing a chronic illness (like many other things in life) can cause a make-or-break time when it come to faith. You can either come to a point where you lean on God’s grace and, even though you may not understand it, you choose to keep on fighting with faith that God will see you through it. Or you can choose to turn away. This spiritual wrestling match can only add to the emotional and physical battles you are already fighting.

 

I mention this not to create a gloomy mood for the holidays but to share a real perspective on the side of chronic illness that is not often discussed. In my eight years with chronic illness, I have gotten to the point where I’ve questioned if the best thing to do was to give up. The pain was too much. There was no promise of relief. I felt like a burden to my family. I didn’t know what else to do. Thankfully through many of my pastoral care classes I learned to become pretty self-aware of these feelings and with the support of my husband and my doctor, I went to counseling. The last two weeks have been very difficult as once I again I feel like we’re in a place with no options and no relief and once again began asking myself the same questions so I requested a referral to see my counselor again last week with the support of my  husband and doctor who helped encourage me to take that step.

 

Maybe you need to be the person in someone’s life to help make that step. Maybe it is your listening ear or words of support and encouragement that help someone see that life is worth living and the battle is worth fighting. Maybe it is you that becomes an advocate for your loved one when he or she is too tired to fight.

 

So if you have a moment, I would ask you to say a prayer for this endo sister and her family. I would also ask you to pray for your friends and loved ones who may be fighting chronic pain and/or chronic illness as the battle is long and hard. I know that the support and encouragement I receive from you, my readers, means so much to me and helps me keep on fighting the fight!

A Post-Op Update of Sorts

Tomorrow marks 3 months since my most recent laparatomy for endometriosis and if you’ve been a reader over the past couple months, you would know that this recovery has not been easy for me. I had figured this recovery would be similar to that of my hysterectomy considering the incision was the same but I never thought it would be worse considering they actually removed organs before but that has not been the case.

 

At 3 months out, I am still dealing with intense pelvic pain but we may be seeing some light at the end of that tunnel. Last week, I went to see Dr. H for a visit due to my pain levels and she decided to do some cultures to send off for testing. Thankfully she did. Results came back yesterday and I’ve got a minimal staph infection (probably caused by the incision where they had to remove endo that had grown where my cervix was removed). So as a result, I’m on a week’s worth of antibiotics but that would ease quite a bit of the pain I was experiencing.

 

We are also taking the time to work on treating my IC and I was able to get my El.mi.ron prescription changed back to the dosage that it was before the national shortage. Hopefully this will add to the relief once my system gets adjusted to the new level.

 

I have also previously mentioned the nerve issue I’ve been having with my left leg. This was the issue that scared me enough to head back to the doctor. I was concerned that somehow things were getting stuck where they weren’t supposed to be and pressing on that nerve but she doesn’t feel like that is the case. Its possible that nerve got strained or injured somehow so I’ve started a new medication to help with nerve pain. It hasn’t really helped the nerve pain yet but boy does it help me sleep better at night which is awesome!

 

Probably one of the most exciting things to come out of this appointment was a new diagnosis of sorts.  Endometriosis can come with some quite unpleasant and often unspoken side effects so I always chalked all my pain up to endo. After some rather personal discussion between my husband, my doctor, and myself, she felt as a result of my years of chronic pain that I have developed vulvodynia which has made certain activities extremely painful so she was able to prescribe me a lidocaine gel to help make those activities more enjoyable and it worked! Woo-hoo! Sorry if that is TMI for some but if you’ve lived with certain chronic illnesses, you know that its a big deal!

 

So I feel like things have the possibility of looking up in the near future. Not holding out hope to be a 100% pain-free (which would be nice if Santa wants to drop that off in my stocking) but I am hoping that I’ll be able to adjust my normal to a more active normal!

 

P.S. In family news – we are finally rid of the stomach bug! **Fingers crossed**

Guest Post: When Loved Ones Hurt

So excited to introduce you to another guest while I’m still trying to recover from surgery! I met Samantha through the wonderful world of Twitter & blogging and am so happy to have her here at A New Kind of Normal! As a spouse of spoonie who deals with chronic pain, she offers a wonderful perspective on how to care for someone you love who deals with chronic pain and/or illness and also how to be receptive of such support if you are the one that is ill! This is a great follow-up to Cheryl’s post on pain & relationships from a spoonie’s persective!  hope you enjoy! Be sure to visit her blog & say hello!

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Immediately after hearing that first gasp of air, that first cry, I searched through the haze to find my husband. I could see it in his eyes – the uncertainty, the nerves. Every new dad probably has the same look on his face but this was something more.

 

I held my breath as the nurse handed little man to him for the first time. His eyes lite up with love, understanding and happiness. But pain was also hiding in his brown depths if you knew where to look.

 caring for a loved one with chronic painimage property of Life As Wife

My husband Kris has Torticollis, a muscle disorder in his neck that limits his range of motion and his ability to carry and hold things or stand for long periods of time. The muscle, the Levator Scapulae, is responsible for allowing you to turn your head. When there are muscle spasms a loss in range of motion and stiffness of the neck can occur. Basically, Kris’ Levator Scapulae is constantly spasmodic; therefore, it is tight.

 

I didn’t know how much pain my husband was in on a daily basis until we had our son. He was good at hiding it from me even though he was medically discharged from the military after his injury was aggravated. When little man was born, I started noticing his frustration. Kris wanted so desperately to rock our son and hold him while he slept but his chronic pain limited his ability. My heart was and still is aching for him.

 

Our son has brought us closer and allowed me to be more understanding when Kris has his bad days. Here are five ways you can be more empathetic if your loved has chronic pain:

 

  1. Don’t assume: that old saying rings true! Assuming what your spouse can and cannot do because of their chronic pain is hurtful and unproductive. I would find myself constantly telling Kris to be careful or not to do something. I know I was annoying him on a daily basis. He is a grown man and knows his limits; he doesn’t need me bossing him around. Of course, my concern comes from a loving place; however, being supportive and letting your loved one live as normal life as possible is key.
  2. Work as a team: I know that it hurts Kris to rock our little man to sleep so I step back and let him get bonding time during playtime, feedings and changes. If there are several things to do around the house, I always try to do the things that I know are painful for Kris. That way, we are splitting responsibilities but he is still taking care of himself.
  3. Give emotional support: On Kris’ bad days, I know he feels really low. I think that being there as someone for him to talk too really helps. Sometimes people with chronic pain undoubtedly suffer from effects other than the pain, which may even include depression. Make sure to talk to someone before YOUR frustration turns into depression or anxiety.
  4. Communicate & Remember: I used to find myself getting upset or frustrated when I felt like I needed more help. Like I mentioned above, Kris is really good at hiding his pain so sometimes I would wonder why he was just sitting there on the recliner, not wanting to play or get out and do something. As soon as I realized he was having a bad day or was having a day of high pain level, I instantly felt my anger melt away.
  5. Above all, love: I know when Kris’ injury was aggravated; it was a big blow to him. He loved the Army and having to retire was really hard on him. Sometimes simple tasks are no longer simple. Self-esteem can also be an issue on bad days. Remember to show and verbalize your love and give encouragement.

 

Do any of your loved ones have chronic pain? How do you help them deal with it?

 


Samantha is the author of Life As Wife. She has a degree in Print Journalism and Political Science. Engaged in high school and married in college, Life As Wife follows Samantha’s nontraditional journey and documents her job as a writer, wife and new mom.

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