My wife suffers from ATN, and has for a number of years now. If anyone is, or has been supporting, a long term sufferer (for whom procedures and medications seem to have only modest affect), and would be willing to share what they have found helps to live an abundant life regardless of this challenging experience, I am looking to understand what we can do to help ensure my wife's life is more than just survival. She is still young, and it is very hard for me to accept only a bleak and helpless future for her.
Dear Sean,
My husband suffers from ATN2. He was forced into early retirement 3+ years ago. This, of course, changed our retirement plans and our everyday lives. Some of the helpful things we have learned are: 1) pace yourselves--save energy for the things you want to do--and realize you can't do things as efficiently or as predictably as before, 2) allow yourselves to grieve and come to grips with life with TN,and 3) don't isolate--but, as you keep in touch with friends and family, they need to understand plans are ALWAYS tentative. You may need to educate people about the disease so they can understand when you have to cancel or change plans or cannot 100% commit to things in the future.
One more thing--I have found it to be helpful to be honest with people. They understand better if they know the severity of the situation and the unpredictable nature of TN attacks.
What I have found very frustrating is that people don't always see the crash. My sister-in-law, with all good intentions, recently suggested my husband should commit to more projects because what she sees is that "he lights" up when he visits her and helps with a project. What she doesn't see is how he pays later for overextending himself.
Best wishes to you and your family.
This is the first time I have reached out. Seeing that someone reached back and responded brought an unexpected & overwhelming emotional response. It is the first time for me to have any kind of connection with someone who is also trying to support someone they love.
I absolutely know what you mean about people not understanding. We have well intentioned friends and family who will call to talk to my wife. Her heart is too tender to turn others away, and they don't see or understand the price she pays for talking to them. Few ever know, as she works so hard to protect our children from the trauma of witnessing her pain. My own mother is here visting, and happened to walk by our closed door while my wife was having an particularly bad episode. Even through the closed door she perceived for the first time what this experience is, and my mother burst into tears.
I constantly wonder, can my wife still have an abundant life? I'm looking desperately for someone who has lived with this for years, and can still say that life is meaningful
Sean,
My Mom suffers from TN, and has suffered with TN for over 40 years. Thirty years ago she had a thermal rhizotomy, which left her with side effects that she has been struggling with for 30 years. Immediately following the procedure, she was not able to function, and it took many months before she could. Then, for several years, she could function and was able to maintain a career, but still struggled daily, although those who do not know about TN didn’t realize and still don’t realize her struggle.
I live out of state, but visit my Mom 2 to 3 times a year for 2 to 3 weeks. Last May I came for a visit. My Mom’s TN flared and I have been here with her since May (now 4 months). She and I drove from Massachusetts down to Baltimore (didn’t fly because the TN flare up of the pain was across her cheek stemming from her inner ear and I felt that the pressurization of the aircraft cabin could send her into pain throughout the flight) to the Johns Hopkins Trigeminal Neuraligia Center.
After discussion of my Mom’s symptoms with a neurologist at Johns Hopkins, and after a MRI, he concluded that the procedures available at Johns Hopkins would not benefit my Mom and that we should persue pain management.
I found a local pain management center and the staff there are very compassionate. My Mom’s case seem to be of interest to the director of the pain management center. He spent an hour with us discussing my Mom’s situation and determined the best course of action is pain medications along with the medications my Mom is already taking for TN. But for some weird reason this pain management center does not prescribe. They work with the patient’s primary care physician to recommend and the primary care physician has to write the prescription, which took my Mom’s primary care physician by surprise. He reluctantly wrote the prescription after several days and delays, but made it clear to me that he wanted me to seek another pain management center that would prescribe. We have faced many of these types of roadblocks over the last 4 months, very frustrating.
The current pain medication is not helping, which does not surprise me. The pain management center also recommended medical marijuana if this pain medication does not help, but even in a state where medical marijuana is legal, finding a doctor to prescribe and then finding a dispensary is almost impossible, again, another road block, very frustrating.
So having told you my Mom’s (and my) tale of woe, I wanted to let you know that there are others trying to give the needed support to a loved one with TN. Sadly, I do not have any words of wisdom. Sometimes you need to give your loved one space/time to grieve. As I started typing this message I could hear my Mom in the other room sobbing in desperation, and it kills me. Sometimes I will go to her when she is in this condition, but it seems like she feels as though she needs to stop when I enter the room. So sometimes, like today, I let her have time to grieve without interruption. Sometimes you have to take time for yourself to grieve, which I do.
Having been away from my home, boy friend, and dogs for 4 months has been quite difficult, but I am unsure how to leave with my Mom in her current condition. We have an appointment with a new neurologist on Monday, that I am hoping will work with the local pain management center. So, I continue to have hope that we will find something to help my Mom. I hope the same for you and your loved one.
As a sufferer myself I may not have the perspective you are looking for, I am 26, I have had constant ATN pain for 2 years now, and only the last 9 months have had any kind of pain control. I went from living on my own, to sleeping in my parents basement. I went from working full time at a job I loved to having to leave 2 separate part time jobs because my pain flare ups were just too unreliable. I spent 6 months AFTER I found some medium pain control, mourning for my “lost future” as I saw it.
With my limited medicational aid, I am in pain almost everyday, but it is “livable,” meaning I can sleep, and talk and breath with it. For rare, brief moments, I almost feel pain free, mostly I have just gotten good at ignoring it and distracting my brain. I work some as a Substitute para-educator, a job which allows me to wake up every morning and choose if I will work that day, I have been doing this for a month and so far I have worked an average of 12 hours a week, I am hoping to get up to 20 or more, but I worry that will wear me out. It seems everything wears me out, even if the pain feels minor, the drugs leave me groggy and pain cuts my emotional and physical stamina more than I would have imagined. But, I have friends that I see on occasion, mostly for bored game or movie nights, where I can lay down and take a break when I need to. I have hobbies, mostly art, that are meditative distractions and therapeutic outlets. I am always searching for new foods that I can eat luke-warm, because hot or cold things hurt, bad. I do a dog walking job on Tuesdays and Saturdays, it brings in a little money, it forces me to get out of the house for an hour, even when I hurt which is good for my mental health, and the Dogs are always SO happy to see me, it can’t help but make me feel a little happy. Also, I don’t have to deal with any people, so if I start crying on my walk, there is no one there to judge or embarrass me. I am getting married in less than 2 weeks. It has been stressful planning the wedding, but it is happy stress. I never would have met my Fiancee if this disease hadn’t driven me home to where my parents live, so I have it to thank for him. I am actually very happy most the time now, which I thought was impossible a year ago.
I needed these things to get my life back 1) some pain control, it didn’t have to be gone, but I literally spent 4 months sleeping less than 4 hours a night and waking to the sound of my own screaming, your body just can’t function like that for very long. My pain is still “bad” compared to normal people, but it is live-able. Like I said above. 2) I needed permission to do less, and be less, and time to mourn the future I used to want. This website was the first place I found people saying “this changed every bit of my life, and it wasn’t because I was weak, it was because this disease is a B****” and I started to stop feeling guilty for not being able to work, or socialize as much as I used to. I made new goals and accepted that some of my old ones wouldn’t happen. 3) I needed to find small, less taxing ways to still be productive. I found a job I can do, even if it is minor, and I make sure to mentally praise myself for everyday I work, and not be disappointed in every day I can’t. 4) I try to socialize once or twice a week outside my family and Fiancee. For me, I go to church every Sunday, it is a safe space where many people know my troubles and understand if I am surly or break into tears randomly, it is most likely due to pain. Other than that I try to spend time in small groups of close friends. I try to commit to going to a few things and often go even if the pain is bad, though I know I will crash hard when I get home. I may only be able to do that once or twice a month. So far I feel like I have been living a pretty full life even with the pain. It is never easy, and I break down in tears of frustration, anger or exhaustion at least once a week it seems. Over all, I am happy.
I have a question for you as a caretaker. I love my future husband and I can not wait to be married to him. My only big worry in our relationship is this disease. I have had fairly good pain control most of the time we have known each other. I worry that he will be blind sided when my pain goes out of control again. He is amazing at being supportive for a day or 3 at a time, but will months or years of providing financial, physical and emotional support put too much of a strain on him, on us? I suppose my question is this, do you feel like your life is less, or worse because your wife is in constant need of support? Does it make it hard to love her long term? I sometimes feel that by choosing me, my Fiancee is giving up things and taking up burdens that he doesn’t really understand, heck, I don’t really know what I will and wont be able to do in the future.
Anyway, I hope some of my experience is helpful. I wish you and your wife luck in finding even some relief from the pain for this awful disease.
-Erika
Erika-
First and foremost, congratulations on your engagement. It is a wonderful blessing when life’s most momentous occasions still transpire despite challenges.
In regards to your question, here’s my perspective of a caregiver;
-It means being flexible. For example, our vacations these days tend to be short and spontaneous. If she is having a good couple of days we take advantage, drop everything, and head out the door. It also means often having to cancel and rearrange, always putting my wife first. It’s not enough to just act like i’m not disappointed when some long anticipated event doesn’t happen last minute, I truly have to care about her more than anything else.
-It means guarding the gate. Well intentioned friends and family, who only get snapshots, don’t understand that uninvited drop-ins are not helpful. I know they are there to encourage, but they don’t see the price she pays later. I often have to be the firm, but kind, bad guy, and tell people that no, they can’t come in and say hi.
-It means being the voice of encouragement. In even her darkest days its my job to speak of hope. It means putting on a smile when what I really want to do is weep for her suffering. When all seems bleak and hopeless, she needs one place to turn for strength. She needs to know there is a shoulder she can cry on that will always be hold strong.
-It often means I am a single parent. I need to pay the bills, help with homework, do the shopping and cooking, be the household taxi, and all those other things. It means spending the needed time with my wife who may be suffering and feeling dismayed, then hitching on a smile and going downstairs to show my children that life holds great promise and hope, and the future is something to look forward to.
-It means accepting that life isn’t right now what it once was. Before TN we traveled the world. We are grateful for those memories. Now life is much, much slower.
-It means never giving up. When one thing doesn’t work, we go out and look for the next hope. At some point something will dramatically change our lives for the better (for example, we are in Rhode Island right now getting a new therapy with Dr D’Amato. So far it is showing wonderful potential. This may be the one. It may not. If so, we will keep looking.)
-It also means recognizing that everything can be a blessing. We laugh together. We cry together. We pray together. We love each other more now than we ever did before. We believe that without a kind Father in Heaven, this would be much, much more difficult.
Hope some of this helps. And again, congratulations!
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Thanks for your insight and truthfulness. I might show this to my husband sometime. We have been married 3 months now, and so far we are doing well. I am having a particularly bad pain day today, I am crying on the couch next to my husband while watching a stand up comedy show on netflix. It is a little surreal to be actively laughing at comedy while your body uncontrollably tears up from pain. But hopefully tomorrow will be better.