Wednesday, November 28, 2012

Special Needs Battle Fatigue

As a parent of a child diagnosed with Prader Willi Syndrome, there are times in my life when the medical complexity of this diagnosis, begins to take its toll on me.

This month has been one of them.

After being diagnosed and treated for strep throat, my son, Nicholas developed a severely swollen left lymph node. Our pediatrician, an ER doctor and our Ear/Nose and Throat Specialist, all suggested that Nicholas may have a branchial cyst or malformation of the lymph node. With so many astute physicians in agreement, it seemed like a medical certainty.

In response to this possible diagnosis, we scheduled an MRI. Nick's anxiety issues required that he be sedated during the procedure. We were asked to come into Boston early for our appointment, only to discover that the MRI staff was many hours behind schedule.

It was a long and torturous experience for our entire family.

When it was over, we waited for almost a week before hearing back from the ENT.

Results of the exam showed that Nicholas did not have a cyst or malformation.

While we were very thankful to hear the happy news; the emotional and physical stress of the event made us feel overwhelmingly vulnerable and fatigued.

These feelings are a healthy response to a stressful situation. But when you are the parent of a child who is medically complex, these difficult medical scenarios can begin to accumulate one after another and pretty soon it becomes difficult to transition the soul back to that quiet, peaceful, and healthy emotional state.

Last week, I had trouble relaxing. I wondered why this was happening since I should be happy that there was nothing wrong with Nicholas.

I thought back to all the events of this past year and rewound in my mind, the enormity of my load.

Nicholas and I have met with specialists in endocrinology, neurology, psychiatry, gastroenterology, nutrition, ENT, opthamology, orthodontists, two neuropsychologists, an orthopedist, PT,OT and ST outside specialist evaluations not to mention his regular visits with his dentist and pediatrician. He has been fitted for a back brace, foot orthodics, braces and glasses. He has had x-rays, EEG's and an MRI not to mention several visits to the ER and an overnight stay in the hospital. There were several IEP's, a hearing and negotiations to transfer Nicholas to a new school.

While all of this running around took a physical toll on my body, there was a much more debilitating consequence. I experienced a type of emotional bleeding that occurs when a parent truly understands and accepts their child's medical fragility and vulnerability. It is a sobering awareness, an in-your-face understanding of a harsh and unthinkable reality.

In response to all of this, a booming voice of doubt inside my head hollers into my soul, questioning whether I have the strength to survive this grueling pace and emotional trauma that accompanies such a life. It is a silent and paralyzing fear that secretly gnaws at my subconscious.

I am not complaining or seeking sympathy. I am painfully aware that our situation could be much worse. I realize there are families who suffer from far greater challenges.

I am thankful every day for our good fortune.

I am also however, only human, and unable at times, to overcome this feeling of helplessness.

I believe I am suffering from a type of Special Needs Battle Fatigue.

Much like a soldier who is no longer able to withstand the sight and sounds of continuous battle, I too am experiencing a type of involuntary paralysis of sorts, a shutting down of the nervous system in response to the constant demand on the fight or flight response.

I am experiencing things like: headaches, fatigue, edginess, difficulty concentrating, a lack of tolerance for noise and confusion, emotional numbness, bad dreams, strong feelings of guilt, depression and worry, angry outbursts, difficulty sleeping, and a loss of interest in things that were once enjoyable.

I realize that by exposing myself to this constant heightened level of stress, my physical body may begin to rebel and become vulnerable to a variety of sicknesses or disease, which only serves to perpetuate the greatest of all my fears....the fear of leaving my son too soon.

But it is difficult to incorporate rest and relaxation into a lifestyle that is accustomed to caregiver chaos. Even when life settles down for me, still there is a secret soldier that lives just beneath the surface of my cheerful persona. A warrior, ever-ready and alert, instinctively programmed to pounce into action at the slightest hint of an emergency situation, an inevitable consequence of my child's many medical issues.

I have discovered there is a critical aspect of special needs parenting that I am neglecting.

My mental health.

I need to develop a plan that seeks to address this issue.

I need to help myself.

When Nicholas was first diagnosed with PWS, the initial stress of this devastating diagnosis and the accompanying lengthy list of specialist appointments caused me to experience a similar period of darkness. I named this depressive period.....the Prader Willi Blues or PWB's. It was, I believe, a form of Post Traumatic Stress.

In order to preserve my soul and continue to care for my suffering child, I developed a list of helpful strategies to help combat the PWB's.

Now, 10 years later, I am finding the need to revisit some of these same therapies and perhaps employ them on a more regular basis.

This is my Sanity Saving List, an ever changing record of helpful tools that help to preserve my emotional strength. When the fatigue of performing in the medical arena begins to wear me down, I try to implement one or all of the following strategies.



1) Hire a Babysitter: This is important to finding some alone time for myself, a time to do the things that I enjoy, alone and uninterrupted. (Time hiding locked in the bathroom does not count)

2) Alone Time with Hubby: An important time to reconnect with my husband and remember what brought us together in the first place.

3) Let House Work Slide or Hire a Helper: The pressure and time involved in keeping a clean house is a thief of time and can interrupt those precious few moments needed for rest and relaxation.

4) Cancel Appointments: Nicholas visits with so many specialists, I could literally spend all of our time just visiting with them. When times get tough, I try to take an entire month off from any specialists and non emergency visits.

5) Listen to Music: This is a new one that I have discovered. Locking myself in my bedroom with the door closed and an ipod filled with my favorite music has done wonders for calming my spirit.

6) Meditate: This is also a new one for me. I have found that purchasing a few good meditation cd's is a helpful tool. It took a while to find the right cd's that resonated with me. Meditation is alot like homework, it was difficult at first for me to make it a routine, but when I did, I noticed an improvement in my mood.

7) Nature Walks: I learned this one from my son, Weston. Long walks outside amidst mother nature is another winner for relieving tension.

8) Talking: I find it very cathartic to talk about how I am feeling with others. It is when I repress my thoughts and feelings that I notice a darker side to my disposition. However, there is a huge warning here. I must be very selective in my choice with whom to speak, for some individuals are not instinctively designed to handle such a heavy load, speaking with these individuals can actually make my pain worse. I try to speak with only those who are thoughtful and willing to listen with a sense of kindness, compassion and void of any judgement.

9) Therapist: Early intervention services in our state included the services of a family therapist. I am continuing with this incredibly helpful intervention.

10) Mini Vacations: I try to plan several mini family vacations throughout the year. Looking forward to time away from the rat race has worked wonders for us all, especially Nicholas who loves new adventures. A few days away works wonders in creating a restful diversion.

11) Write, Write, Write: Even if I do not share these thoughts with others, the process of getting it out on paper (or computer screen) has been particularly cleansing to me.

12) Sleep, Rest and Relaxation: During times of increased stress, I try to sleep more. If I can't sleep, I try to just rest and listen to music.

13) Special Needs Groups and Individuals: No one understands me better than those who share my struggles. Reaching out to these groups or individuals can provide some interesting and effective solutions.

14) Positive Reflection: This, to me, is the most important. With every stressful event that has ever occurred while raising Nicholas, if I dig deep enough, I can always find an important lesson. So, when my mind wanders back to disturbing events of the past, I force my brain to explore a positive aspect that occurred because of that experience. I do not repress the event, since I believe it is important for the mind to rewind the experience and reflect upon it.

Implementing these strategies is painful. Maintaining them...even worse, feeling like a type of special needs homework, a dreaded but necessary evil. But by calming my spirit and accepting my child and his diagnosis, I am, in a way, helping myself to live a more happy and fulfilling life.

Ironically however, of all my life saving strategies, it is my son's soothing sage-like spirit that effortlessly balances my warrior woman energy, it is interesting to me that when I physically tire from the heavy load of caring for my son, it is he who comforts me most, and I wonder if perhaps this is no accident?


Would love to hear what helps all of you?
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Lisa Peters writes about the adventures of special needs and family life at her blog. Please come share our experiences at www.onalifelessperfect.blogspot.com. If you would like to learn more about Prader Willi Syndrome, or make a donation, please visit our PWSA USA National Organization at www.pwsausa.org. Thank you for reading.


28 comments:

  1. I love your list. For me it boils down to prayer and exercise everyday. I also have a 10 y/o child with a syndrome - I always wondered if/when the tendency toward battle fatigue would ease up? I guess it doesn't, altho I have sensed that there are seasons of better/worse.
    Sometimes even special needs moms friends/groups can devolve into always complaining about the suckage. In my experience, this is where we have to lift each other up - focusing on and CELEBRATING the positives has got to be part of it.

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    1. Thank you Kate J, you know I can't believe I forgot prayer! This too has helped me to let go a little more and to try to find more of the spiritual meaning in things. God has listened to more than a few of my troubles!

      I so agree with you about the importance of lifting each other up and celebrating the positives. I thank you for lifting me today!

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  2. Hi Lisa,

    I've been following your blog for over a year now - maybe two? We have two kiddos with special needs as well - I totally get what you're going through. We actually live in MA too, near Foxboro. I've recently gotten back into working out and it's a HUGE release of anxiety. I do a really intense kick boxing class and I imagine kicking and punching my sons' disabilities while I'm doing the class! :-) When I'm done I feel totally relaxed and I'm able to deal with everything so much better. I agree - it's so important to take care of ourselves! Like you, I put myself at the bottom of the priority list for years. We're finally at a point where things are becoming a little easier, and it feels good to take a breather and put myself first once in a while. Thank you for all your wonderful words - I really can't tell you how much of an inspiration you are to me! Take care!

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    1. I am so happy to know you can find some comfort and familiarity in reading our blog. We share so much in common! It is nice to meet another parent from MA! I have always been lured by the idea of kick boxing. You have convinced me to check it out...I can imagine it must be a great release altho it may be difficult for me to restrain myself from using some of the techniques during our next IEP meeting!
      Thank you for your comments and your kind words.

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    1. Re: your facebook reply...I think you are right....a boot camp for special needs parents may just be a brilliant idea! Thank you my soldier sister!

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  4. Thank you for sharing. I have a daughter who in the last year has been diagnosed with cerebral palsey and autism spectrum disorder and I went through a grieving process for so many reasons...for one the life we planned for us as a family, second for her and her many struggles and soooo many other things. I totally agree that you feel gulit that things could be worse so we shouldn't feel this way (and I am grateful too) but I also feel things could be better. I have not yet found support from parents who are in similar situations locally but I lean heavily on my husband, who is so amazing and my family who understands our struggles. Find a sitter is hard too because I have such anxiety because she is nonverbal. We all just get by but I am so blessed to have a little girl who smiles through all her struggles and whenever I'm down I think of her.

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    1. Thank you canns for your comments. You are so fortunate to have a loving husband and supportive family too. You are so right, it is difficult to find an appropriate sitter! I have struggled with that too. Am sending you and your family well wishes and peace.

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  5. Lisa, so wonderful to "hear" from you -- we met a few years ago when we did the book signing in Providence for the "Cup of Comfort" book of essays. I think of you often and wonder how you and Nick are doing. You have put a name to something I am feeling right now as we go through testing to figure out a new problem my son is having. Lots of appointments, screamy blood tests, and general worry over what is wrong. I am going to try some of your tips, because I'm pretty tapped out right now. I am going to start following your blog so that we can stay in touch! All the best to you and your family.

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    1. OMG...of all things! Kris, so happy to reconnect with you once again. I remember our reading together in Providence with much fondness and think of you and Truman often too!
      That experience seems like so very long ago doesn't it? I was so touched by the kindness and compassion from the other families of children diagnosed with William's syndrome who came out to support you. That day almost feels like it was from a different lifetime, doesn't it! I would be honored to have you follow my blog and look forward to keeping connected with you. We have so much to catch up on. Do you write a blog? I would like to follow you too if I may. Thank you so much for getting back in touch! I am so happily surprised.

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  6. "I am experiencing things like: headaches, fatigue, edginess, difficulty concentrating, a lack of tolerance for noise and confusion, emotional numbness, bad dreams, strong feelings of guilt, depression and worry, angry outbursts, difficulty sleeping, and a loss of interest in things that were once enjoyable." DITTO! Thank you for your honesty and for sharing all of that. I hope you feel more peaceful soon. I hope we both do!

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    1. Thank you for your comment and support...am sending you some peace and happiness too.

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  7. Great post and advice, Lisa. I am certain that so many people will benefit from these.

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  8. Thank you for sharing. We are in the process of our second special needs adoption with a little one who is blind and has a massive amount of delays. It is really easy to feel overwhelmed most days. I love the list. I also scrapbook and do other artsy things to decompress. Thinking of you guys! Lean on us until you are ready to walk on your own!

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    1. Scrapbooking is such a great idea, thank you for sharing it. I appreciate your support.

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  9. Well done, Lisa. We have been through the ringer this year with one of our daughters with special needs (not the two with PWS). Our daughter with CP had a major operation and was hospitalized over an hour away from our house for five months. She continues to need intensive therapy at the same hospital 2-3 times a week. I think I was going on some strange energy that pushed me through, but now that some of the pressure is off (she is now outpatient), I am experiencing some of the symptoms you describe. Let's face it: when you have a child with medical needs, you can't just take a day off. This constant pressure does take its toll. I pray and try to keep positive. Thank you for this post.

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    1. Thank you Yael. I am thinking of you and your family. Like you, I find that after a particularly difficult medical crisis, I go into a kind of emotional "funk"...not really sure what else to call it but it is exactly as you describe. Please feel free to email me anytime if you feel like venting... Sending you and your family much peace.

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  10. Thank you Lisa,
    Your ability to articulate your condition is very helpful.
    My main source of renewal comes from working in my art studio, exercising, taking the day off, and perhaps one of the best therapies has been joining a 12 step program for co-dependents. One last thought is that the intensity ebbs and flows. Know that this too shall pass.
    Thanks for sharing.Robin, Mom to Jackson 7 years with pws upd and autism.

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    1. You are so right, about the ebb and flow of the intensity of life. Your words "this too shall pass" gave me chills. My father passed away shortly after my son Weston was born. Just before he died, he made me a handmade sign to hang on my wall at home. The sign was to remind me of my mother's wise words. She would always tell me whenever I would start to stress too much about things..."and this too shall pass" Thank you for this reminder and for validating my Dad's continuing spirit.

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