Out of control

Generally, we all like to have some control over our lives. One thing that TN doesn't allow me to have, just like any other illness, is to have control over how I feel physically. It doesn't allow me to have control over how severe an attack is, though I can try to avoid triggers, I still can't decide when I'll have an attack and when not.

I do not have control over how I will feel in the morning, even if I did go to sleep with low pain levels. I do not have control over how much pain I will have by the time I get to work, even if I was able to wash, brush my teeth and get dressed without attacks. 

I think you get my drift.

Having a diagnosis of a progressive condition, one without a curative treatment, means that I have had to learn that there is a lot that I can no longer control. I have no control over how much it has progressed in the last 5 months.
It has been, and continues to be, a very difficult thing to deal with. As a result, I have found that I try to hold onto as much control as possible in areas of my life where I still have it. Certain aspects of work, being able to choose not to take medication that isn't working, selecting a procedure after I have researched it and discussed it at length with the specialists.... these are all things that I have control over. 

In a way, this is why it is so irritating and at times, infuriating, for someone to say something like, "but you were fine yesterday/earlier." It is extremely frustrating to have simple things that I should and can still do, being taken away from me because others feel that they are either more capable or are fed up with waiting for me to deliver on a promise where in the past I would have done it much quicker. I am not saying that I still expect to, or want to do everything I could before. I am however, finding that I am asking those in my life more and more to at least talk to me about their ideas of issues that affect me. To take away my decision making ability when I still have it, is by far, the most hurtful thing that has happened since my diagnosis and the progression of this disease. 

So, for those, who like me, are struggling to hold on to the seemingly simple matters in life.....carry on. Keep that control, even if your body has decided to take so much away from you. For those who have to live with, and interact with us, remember, this physical condition, though it has its' psychological effects, does not take away my ability to think and reason as I did before. I can still have a reasonable, logical conversation with you (assuming I am able to talk on that day) or email discussion. My disease might reside in my head, physically, but it has not taken full control of it and/or its' contents.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Randomly musing and missing being part of your life

A good friend recently said something to me that makes perfect sense, but yet, is something I have struggled to accept since becoming ill. People generally stay away from someone with an invisible illness, not because they don't care, but because they feel helpless to help the person they care about.

This makes sense. I know it does. On a purely logical level, I do understand. This is something that I have heard so many in the support groups cry and vent about. Family members who no longer invite you to gatherings, friends who don't invite your kids out to play with theirs, friends/family who no longer visit.

It is so extremely difficult to deal with. I have always been a home-body. Not necessarily someone to go out and party. What I have always done though, is enjoy spending time just being with family and close friends. I miss that. I have had to adjust to being a hermit for most of the week with a maximum of 2 days out of the week where I have to be in the office. Even that has become difficult, with more sick leave these days than before.

I have had colleagues, friends and family all say the words "I wish there was something I could do" to me recently. I do too. I wish there was something I could tell you to do. I wish I knew what would help. BUT, because I don't know what will work, and neither do the very qualified, highly specialised doctors, I do not have a straight answer to that statement. What I do know though, is that 'something' you may wish to do for the chronic pain warrior in your life, is just to be there. Coming to visit, even if it's just sitting and watching tv with me would be awesome. Sending a short message just to say hi, making sure meetings are not unnecessarily long.....those are 'somethings' in my book.

I have slowly, but very surely, felt my friends pull away. Colleagues and friends may be frustrated at my limitations, and I understand that. Just imagine how frustrated I am? How frustrated I am to have to plan my day to make sure that I do not have to brush my teeth too close to having to be in a moving vehicle because the combination would cause too much pain? Imagine how frustrated I am to have to avoid work gatherings that are in a place with too many windows/air conditioning/outside?
I know it must be irritating at times for you too. Irritating to have to hear about my pain all the time. Just imagine how irritating it must be to have absolutely no control over how much pain I may be in, over when an attack will hit.

Think of it this way, if someone had to break their arm today. Would you give them all the manual labour that needs to be done around the office/in the home? Would you tell them to get over it, pray the fracture away, deal with it because it isn't a terminal illness? Tell them to stop wearing a cast/sling to show everyone that their arm was broken? Would you stop being their friend for something that they did not have control over? I have heard statements to my face and behind my back, all to this effect. I don't expect pity, I don't expect my friends and family to be constantly asking me if I'm in pain (I always am). What I do ask for, and I am sure others with TN ask for the same, is for you just to be there. Just understand that this is scary for me too. I feel helpless and without any hope most days, and it would be awesome if you you said the same to me too, because then we could figure it out together.  For now though, unless I make the effort to contact many friends/extended family members, I have had to accept that their absence from my life is something I will have to live with. I just sincerely hope that it is because they don't know how to not be able to fix me. I don't want to think of the alternative, because that is a whole other post. A post about those who no longer want to be in your life because you can no longer help/do for them what you did before.....


To my fellow TN warriors, may the elephant on your face be gentle today, if not, may he go to sleep really, really soon.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

I'm okay

There's a popular spoonie who goes by the name of Mrs Welches on social media. She regularly posts pictures and posters that resonate with me. Today I saw one that I am sharing here explaining what it means when we say, "I'm okay."

I would like to elaborate on what that means to me, since its invariably my response to a "how are you" these days.

I'm....
Overwhelmed
Killing myself
Angry

Yearning

I am Overwhelmed  by the effects that TN has had on my life. Overwhelmed by the pain, the constant, excruciating, ever increasing pain. I am overwhelmed by the decisions that I find myself needing to make regarding my life, my future, my identity. I'm often overwhelmed just at the thought of having to do simple tasks, taking a shower, brushing my teeth, opening the front door when I can see that the wind is blowing outside.

I am Killing myself daily. Not literally, but figuratively. I am killing myself just trying to work for more than one day at a time. I'm killing myself trying to push through the pain on days when the kids need me to be there for them, helping with homework, going to a performance, supporting them at an event. I'm killing myself emotionally, trying to be strong until the kids go to bed each night just to give them a sense of normalcy.  It may be hard to believe, but it is killing my soul just knowing that I'm losing my ability to fight through the pain as well as I may have done last week, because this week is just so much harder and I know that next week will be worse.

I am Angry! I am filled with rage at this body that I possess. I am no longer as angry as I was before with doctors or colleagues or people in my life for not understanding and believing me. I'm angry at this disease. I'm angry because of what it has taken from me. I'm angry because I can't sleep, I can't eat, I can't talk....when the pain is at a maximum. I'm angry that it takes from me simple and important pleasures, like physical intimacy with my husband, kisses from my kids or my parents, long conversations with good friends. I'm seriously, dangerously, angry right now. The anger obviously is the only thing that fuels me enough to go on some days, but anger of this intensity can't be good.

I am yearning for so many things. I'm yearning for the me that I was before all this started. I'm yearning for the dreams that I have had to give up on and for clarity in making new ones and having the courage to attempt to achieve. I'm yearning for a few minutes, seconds even, of relief. Most people with classic TN do not have constant pain, unfortunately, I am one of the many who do. I am yearning for a night of uninterrupted sleep. I'm yearning, and aching, for comfort for my husband and kids as every attack and flare breaks their hearts in so many visible ways. I'm yearning for a cure for all of us who suffer this horrible fate.

So if you ask me today, how I am doing. I can honestly say, I'm okay. I like Mrs Whelches description and explanation of what she means when she says it, this however is mine. My explanation can't fit onto a poster, and I believe that hers might not either. BUT, I am grateful for those like her who dare to say the things that resonate so well with all of us suffering with invisible, chronic, illnesses and pain. I'm proud to be a fellow spoonie with her and continue to make it my mission to educate and inform others about it through my own social media presence. Some days though, I'm just okay  and those are truly the days that I find it harder than most to fulfill that mission.

For my fellow TN fighters, warriors we may be, but remember, it's ok not to lie when asked how you are today, it really is ok for you to be  okay. 

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Dear Dr X - an open letter to health professionals dealing with chronic pain

Dear Doctor X (insert other health professional as it applies)

Today I feel that I need to let you know what is on my mind. I studied and worked as a health professional and still work in that field, albeit, in education now. So before I say what is on my mind, please know that it is done with respect and a certain level of understanding of your world.

As students, you are taught the physiology and anatomy of a disease. It is impossible for you to know everything about every illness, I know that. You did however, I hope, enter this field to help bring relief to those in pain or poor health. You do this, often under difficult circumstances and with a very tired mind and body. If I may be as bold as to offer you some advice, please let me do so:

1. A patient with a chronic, rare, incurable disease needs understanding. That is a fact and imperative if there is to be any success in treatment. You may not ever truly understand the pain that this person is experiencing, and I sincerely hope you never do. But please try and understand the frustration and despair that they enter your office with.
2. You are intelligent and well educated, but that does not mean that you can assume you know exactly what all the symptoms are of this disease. It does not mean that because you were taught that chronic pain conditions may be psychosomatic, that this case is that. It does not mean that because this patient does not fit into the textbook picture of the disease, that they do not have it. Do me a favour, use the technology available to do a quick search on the research going on out there on the disease. It will help your patient to know that you are interested in finding out how best to help them way more than if you say "I have been practicing for years and have not heard of that symptom," OR "Because you don't respond to the medication decided upon 20 years ago, there is NOTHING else I can prescribe."
3. On the subject of research. Please understand that thanks to technology, many of the patients you see with these conditions, have done a lot of research. Please refrain from being condescending by assuming I am using WebMD and Yahoo Answers to find out information about my illness. I am not an idiot. I am not gullible. I look for scientific studies on a daily basis, hoping that today will be the day that someone has published a new treatment option. I am not alone in this, MOST of us do this. You may find that your patient will come to you with those studies in their bag, but unless you seem open to finding out new scientific information, that research article that was printed out, will walk out the door with the patient.
4. We are, generally, NOT drug seekers. Asking you for a prescription for a medication that has helped in the past, or helped someone else that I have come across with the condition, does not make me a drug seeker. Yes, many of the drugs we can take do have addictive possiblities, but that doesn't mean you have the right to say to me : "No, that is very addictive and WILL NOT help for your pain" and walk away. It is hurtful to hear and adds to the despair. Perhaps you have another treatment option as a suggestion. If not, please read no. 2 in this letter.
5. Your comments about maintaining quality of life to a patient who has had the rug pulled out from under them in a heartbeat is appreciated. Please though, try to understand this. Just because I am still employed or am able to look after my family does not mean that I have the same quality of life that I had or that I believe I deserve. My visits to you and many others in your profession are part of my life. As a result, quality of life for me includes the quality of care I receive from you. If that is not at a high level, if I am not longer able to work with the same efficiency I once did, if my kids have had to grow up way before their time because I am not able to do what I did for them......then I feel that I do not have a good quality of life. So to those in your profession who say " I can't do anything more for you, let's try to maintain your quality of life", please understand exactly what that means.
6. Finally, it is unacceptable, completely and utterly, unacceptable, to expect that you know more than I do about my own symptoms. Symptoms, by definition, is a subjective thing. There are signs of an illness that are objective, but only I can tell you what I am feeling. So please, I am begging you (and I've actually used these words), when I say do not touch my face to 'check my sensation', don't do it. It is excruciating. If I was able to put up with it, I would rather have my daughters kiss me on the cheek....that is worth it. I would rather have my husband stroke my face, but when you decide that you're not sure if what I am telling you about my body, my symptoms is true and you then decide to elicit the exact symptom that I have just described to you as being unbearable, don't act all surprised when I scream, cry and attempt to inflict pain on you with a slap or a kick.

Dr X, I sincerely hope that you take this in the light with which it is written. I appreciate your compassion and care for all your patients, including me. I understand your frustration at not being able to provide a quick fix for me. If you are still around and willing to be my physician even after you're out of ideas and are simply able to manage my care with follow-ups to ensure my records are up to date, I applaud you. Believe me, we go through so many of your colleagues because they simply show us the door when we are too complex for them. 

There is much more I would like to say, and I am sure that I will find the words and courage to do so one day, but for now, Dr X, thank you for your time in reading this. I sincerely hope that if there are other doctors reading it, that they are some of those who DON'T need to read these words and that one day you will also say, 'that used to be me.' Also know that it is my goal to spread awareness about what chronic pain, specifically, Trigeminal Neuralgia does to a person, so I will stand by what I have said here. I will also be working hard to change the minds of the medical insurance companies and my colleagues in the way we educate your future colleagues - So, I am not only targeting you.

Sincerely

Lianne

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader