Riding Out the Storm


When it comes to pain, all you can do is wait for the storm to pass and while you wait, you ride it out.  For me, it has been one thing after the other.  Towards the end of December, I moved to a new place.  Shortly after that, I suppose from packing, unpacking, cleaning, etc., I found myself dealing with a combined RA/fibro flare.  My muscles and my joints were inflamed beyond belief and I found myself wondering whether I had ever felt that much pain before.  To add to the joint and muscle pain, my eyes were extremely dry and inflamed, my sinuses were inflamed to the point where my nose was constantly bloody, and the lymph nodes in my neck were swollen.  But I rode it out and got through it.

I managed to have a few good days before the herniated disc in my back decided to pay a very inflamed visit.  I figured it too would pass but it didn’t.   Two days later, not only was my low back inflamed so was my neck.  The herniated discs in my neck had their turn. The pain and stiffness have been unbearable.  I have felt defeated in a way that I had not felt in a long time.  I have seen a part of me that I had not seen in three or four years.  That part of me was angry and depressed.  Pain does that to you because it attacks you from the inside out.  I have felt as if I hit rock bottom and I cannot find my way back up.

Because I don’t smoke or drink, I drowned my sorrows in food as I had all those years ago when pain was so debilitating.  The difference was that this time I recognized it.  I thought about how hard it was to lose just some of the weight I had gained after my diagnoses.  I have at lost 35 pounds since last summer and here I was repeating the same bad behavior that had caused me to gain that weight in the first place.  I stopped myself before it was too late.  I also realized that I was angry and depressed in the same way that I was back then and I did not like that person.  So, I did the only think I could do. I acknowledged that I was in pain and that I would just have to ride it out.  One day at a time and I would be back to my old self.

Every day I am in pain, I ask God for my life back but my life has been like this for so long that I don’t know what I am asking for anymore.  If you have been in pain for such a long time, will you ever not be in pain? Is that even possible?  I am only 37 years old. I figure I will be alive for at least another 35 years and I am also going to be in pain for all those years.  How can I handle this as I get older and as my RA, fibro, and chronic pain get worse?  Lately, I have been dropping things and my hands are shaky and unsteady and that scares me. I want to believe that remission is a possibility but after I got better, I got worse and I don’t see remission a part of my life.

When I pray, I find that I cannot concentrate because of the pain and stress that weighs down on my life and worry that I hold in my mind and my heart.  Even in prayer or trying some other relaxation method, it is hard to feel relaxed because of the joint and muscle pain, the stiffness and the muscle spasms.  When I prayed today, I conveyed to God that he was the one that understood my ordeal better than anyone and he also understood that when pain is bad, I am in a dark place. I hate being in that dark place. I found myself there the past few days and it feels like I am suffocating.

One of my resolutions for the New Year was to acknowledge my pain and that is what I am doing.  It has been easy lately since my pain has been hard to ignore.   Tomorrow is another day and hopefully, a better day.

“So how does one keep up the fight? You take it one day at a time. You get up every morning hoping that today is better. You don’t stay in bed and think hopeless thoughts. You live for today, you do what you can and you don’t allow yourself to worry about things getting worse. Be thankful for all the things you have rather than what you don’t have. Strive for the strength and courage to accept chronic illness with self-respect and humility. Take care of yourself and those who love you and support you. Enjoy the beauty of today and don’t spend your days worrying about tomorrow. This is all you can do and this is all any of us can do.”

I wrote those words a while back in a post called “Do I ever feel sorry for myself?”  Sometimes, even I need to see those words to recognize that chronic pain is out of my control.  The only thing I can control is my reaction.  So yes, tomorrow will be better and if it isn’t, the next day will be. I have to be hopeful and I know that things always get worse before they get better.

There is a song by Gary Allan with lyrics, “Every storm runs out of rain. It’s gonna run out of pain. It’s gonna run out of sting…”  Eventually, the pain will stop and I will be set free.  That pain will eventually run out sting and that is enough hope for me.  That is all the hope I have and that is all the hope any of us have.  I think we get used to a certain threshold and when we are tested at a higher one, we lose hope.  I will be fine once I am back in my comfort zone – whatever that will be after these last two flares.

My Relationship with Pain


Most mornings, I wake up to pain. Sometimes, I don’t always realize it right away but when my feet hit the ground, pain becomes my reality. Every day is generally the same.  My body really hasn’t changed – I mean every bone is still there and intact. I am sore but I am still functional.  In other aspects, it has changed. I have gained weight from medication and from not being as active as I was before. Sometimes I drop things because my hands have a way of giving out on me.  Other times, I can’t manage tasks the require hand and finger coordination, i.e. like opening a sealed bag of frozen vegetables or that cheese stick that my three old wanted open yesterday.  I eventually get these things open but it takes a lot of work to get my hands to cooperate.

I used to have dreams about being healthy but I don’t any more. The longer I live with the reality of rheumatoid arthritis and fibromyalgia, the more I know that my pain, to some level, will always be there.  I no longer feel disappointed that I didn’t go into remission or that I am not pain free. It took me a long time to get here and while I am a believer in strong effort, faith and even possibility, I know that I am in a lot better place than I was four years ago. I know that things could have gotten worse. They didn’t and if anything, they got better.

People in my life – coworkers, friends, family – still have this notion that if I am moving, I am not in pain. As a matter of fact, a coworker commented yesterday about whether I was having a pain free day simply because I was moving with ease.  The truth is I am not having a pain free day. I am actually having a not-so swell day with pain.  I learned a while back that a not-so swell day is a good day. After all, I am still a productive member of society.

Most mornings are usually the same for me.  Upon wakening (after hitting the snooze button way too many times), my feet and ankles are stiff and I gracefully (as if it is possible) limp to the bathroom.  How I would love to stay in bed an extra half hour or hour but I know that is not even a possibility.  I still have full time job that I need and two children that need morning routine assistance.  My older one is twelve, and his morning routine assistance usually involves my reminding him (over and over) that it is time to get up and then putting his shoes and coat in his view as he graciously takes his time while I am always in a rush. I grateful that – for the most part – he is independent.  On the other hand, my three year old needs me to get his clothes out and my assistance getting ready.  He can dress himself but that would involve a lot of silliness and putting off on his part so really, it is my job to get him ready in the morning.  Despite all the morning chaos at my home, I wouldn’t have it any other way. These are reminders that I am alive and capable, albeit not pain free (long sigh).

Everyday reality looks me in the face and often times, reality is imperfect as am I. However, I know that I have to have strength and courage to face life and reality.  I often mind myself that my children need to see that success is possible despite obstacles. They look to me for answers and they want to see safety and protection in my eyes. For me, the relationship I have with pain cannot only be seen through my eyes but it is also written all over my face. I know that my kids see my battle with chronic pain but they also see my courage and my strength. I used to think that I was much stronger before RA and Fibro but I know now that I am stronger than I have ever been because of RA and Fibro.

I remind myself that life still goes on despite my battle and tainted relationship with chronic pain. The reason I used the word “tainted” is because I cannot imagine any of us having a good relationship with chronic pain. Our relationships with chronic pain are contaminated, poisoned and every other fouled relationship you can think of.  There is no good or harmonious relationship with chronic pain.  The only positive spin to this kind of relationship is “tolerable.”  We are tolerably putting up with the pain and that is all the positive we have. We are also working to stay functional and are willing and eager to take care on all the challenges that life with chronic pain has to offer.

Each day living with chronic pain is different but for the most part, the days are pretty much the same.  Some days are better and some days are worse.  Often times, the evening prior can predict the following morning. As each day progress, I feel thankful and blessed for all I have accomplished with chronic pain and despite it.  I learned following the first year living with RA and Fibro that making a choice to try to outrun my pain would be my downfall. I learned that through trial and error.

There is always some price to pay for overdoing things and for not managing your conditions.  It doesn’t mean, however, that we shouldn’t continue to look for rainbows and sunshine.   Modern life is for the most part, “business as usual.” You know how businesses always open – rain, snow or shine.  Life goes on despite how we feel – both physically and emotionally.  That is why we have a choice. We always have an option of one of three things.  One, we could try to out run our diseases by not accepting them but there is a big downfall to that.  Two, we could take the attitude that our lives are over and there is no use is continuing to live full lives.  Or, we could take the third approach which is my favorite, we accept that we have limitations but we don’t let the diseases we have and chronic pain we live with dominate our lives.  Because the biggest fact of life is that life goes on.  We just have to decide whether we want to be a part of that life.

My relationship with chronic pain is what I call my work in progress.  I went through the trying to outrun my disease option and I also went through the “there is no use” option as well. In the end, I found that acceptance of my limitations and pain didn’t mean that I couldn’t have an active life.  In fact, four years later nothing in my life has changed but my attitude.  My relationship with chronic pain as evolved over time.  I know that chronic pain is a part of my life and so does everyone else.  However, I refuse to let anyone compare me to the stereotype of chronic pain.

Looking at my life and all I have accomplished before and after chronic pain came into my life, I don’t have any regrets.  I feel so blessed to have another day to share with my children, my family and my friends.   I see everything that I am and have always been: strong, ambitious, content and aware of my obligations.  What I know is that balance is the most significant key to living a life with chronic pain. The second most valuable key is the first “person” I speak to every morning.  My morning chats with God are reminder that I am blessed despite RA and fibro being a part of my life. I pray for strength and I pray that my health continues to improve.  I also pray that RA related complications stay away because my kids need me right now and I cannot imagine how chaotic their lives would be if I got really sick or worse.  My relationship with God has only gotten stronger the longer I live with chronic pain.

My relationship with chronic pain has taken a positive note in the past year.  This happened because I made a choice to embrace my pain (without giving in to it) rather than trying to work against it.  Every morning is a reminder that I live with chronic pain but it is also a reminder that I am alive and functioning. For that and for my faith in God, I am grateful.

Chronic Illness is as Lonely As It Gets


This article is a repost from July 19, 2010.  I have been blogging about my brother’s illness often but I thought we could use a change.

Years of dealing with chronic illness and now advocating for arthritis, I know first hand that chronic illness is very lonely. A person dealing with chronic illness can feel alone even though he or she in a room full of friends and family. There are two main reasons that chronic illness patients feel so alone. The first is because of the physical inability to do all the things we want to do because of our symptoms. The second is because we feel like no one in our lives understands the struggles we face everyday.

Many people in my life, including those who struggle with me, tell me that they wish that they were as strong as I am. In all reality, this is the person I present myself to be. The person I am has physical limitations and often feels alone in a room full of loved ones. Loneliness and aloneness, believe it our not, are two different things. Chronically ill patients feel both. While it does help to be a part of support group, or know others who struggle, you still very feel very much alone in your own body. Loneliness is those feelings of isolation and disconnection you feel when certain needs in your life are not met. With chronic illness, that comes with the inability to get others to understand how you are feeling especially when it is hard to describe or put those feelings into words and also, the inability to feel in control of your body.

With RA, FMS, or any chronic pain condition, there is going to be a loneliness factor. We all go through the “Oh, woe is me” and “why am I so alone?” parts and then, our lives get busy and we forget, and then we remember, and the patterns goes on. On the days where I feel like this, I try not to blog because most of the people who read my blog often know when I am feeling down. Sometimes, especially at the beginning, during (of course), and towards the end of a flare, I find myself wishing I could find a place to cry. Regardless of how many people around me say they care and that they are just a phone call away, I still feel very much alone and in particular, in my own body. Chronic illness is more than just pain and multiple physical symptoms; it is also the feeling of being very alone.

When I am asked what is like living with these conditions, I try to explain the physical aspects while trying to leave out the emotional. I remember in the first months after diagnosis when people I asked, I would get really upset and start to cry. The first six months after diagnosis of RA and FMS were the most emotional of my life and being asked what it felt like was the loneliest feeling imaginable. I wanted to fit in but I felt like everyone around me was normal and I wasn’t; so how could I fit in? I felt like I weighed 500 lbs because of the swelling and I also felt really ugly. My conditions were eating me up from the inside-out and it felt like they were nagging at my soul.

I would go online and read about the struggles that others were facing with similar conditions. Those stories would leave me in tears because those people, too, were very lonely. Then, it hit me that they felt what I was feeling and for the first time, in a long time, I realized that I was not really that alone. There were others, just like me, struggling to find meaning and purpose to their lives despite RA and FMS. I wanted a reason to belong and I found it among people who were looking for the same thing.

Feeling alone does not mean you truly are. There are people to connect with who understand and who really get what you are feeling. Sometimes they are a click away on your computer and other times, they are in your city. You can always ask for support from them and because they know and understand, they will give it to you. For each of us, there are always days where a little extra support is necessary. So, despite the ever so lonely feelings that chronic illness has to offer, none of us are truly alone. We just need to know where to find support.

Anger and Chronic Pain


I often take a look at some of the searches that venture to my blog and this is another one that stands out: anger and chronic pain.  For those of us who suffer from conditions that cause us to be in constant pain, anger is a typical emotion.  This search option always leaves me teary-eyed because as kind of a person as I try to be, I find myself angry often.  I am angry at my diagnoses, at my doctors, past and present, the misdiagnoses of nearly ten years, at the world, and that the people in my life that don’t always understand.

You know that saying, “put your best foot forward,” but that isn’t easy when that foot hurts and is causing you so much pain and hurt.   Imagine someone stepping on that foot.  How exactly do you respond? Do you thank that person for making you hurt more or are you angry?  Of course, you are angry and probably fuming with anger.

Chronic pain makes a person angry at life, that his or her body, his or her limitations and at the attitudes of others. While anger is healthy, it is problem when you spend your day ticked off in a boiling and raging matter.  While anger can distract you from your pain, it will ultimately defeat you.

The Problem with Anger

The problem with anger is that affects your health and your relationships with others.   Whether you make a choice to hold it in or express it, you are damaging your physical health.   Angry people will develop high blood pressure, heart disease, ulcers, headaches, rashes and susceptibility to infections.  In addition, it causes muscle tensions thus increasing pain levels.  With relationships, anger and aggressive behavior can destroy those leaving you without a support system.  Anger destroys trust and communication within those relationships and triggers aggression in others.   It is not fair to those you say you love to have to tiptoe around you because you are angry.  The end result of your anger will be isolation, loneliness and alienation.  Anger also feeds depression leaving a circle of emotions of anger, pain, and depression that have no ends and no beginnings.

Recent studies show that anger and sadness increase pain so it is important to learn how to express anger in a healthy manner and how to deal with the stresses that trigger your symptoms and increase your anger.  We all experience anger because it is part of being human but when that anger is handled poorly, the person expressing the anger hurts him or herself and the people that they say they love.

Managing Anger

Managing anger means understanding what you are angry about.  In addition to chronic pain, the symptoms of chronic conditions are exacerbated because of stress and sleep deprivation.   Sometimes it helps to keep a journal to write in and express your feelings especially why you find yourself angry and it allows you to see what triggers that anger.  Talk about your anger with a good friend or even see a therapist so you can better understand your anger and learn to deal with it.  Sometimes, you can learn this on your own, other times you need a friend, and sometimes, you need professional help, but don’t continue to be angry because anger can be unhealthy.

Anger part of dealing with anger is learning to express yourself better.  It also means taking action to deal with it by eliminating triggers and fixing problems that make you angry.  It is also equally important not to obsess over your anger unless you welcome an ulcer and high blood pressure.  Learn to solve problems rather than lashing out.  In addition, sometimes avoiding the issues that cause your anger can be just as beneficial as talking about them.  If there is a topic that increases your stress, then let it go and find a way to avoid it and to try to find solutions to dealing with it so that it does not make you angry often.

With chronic pain, pain management is the solution to dealing with anger, in addition to stress reduction, better quality sleep, and expressing your feelings in a healthy way.    Understand that managing anger is just one of the many emotions that those of us with chronic pain and chronic illnesses have to endure.  These feelings are normal part of responding to the pain and they are also a step forward towards coping.

Why Me? Why Now?

When we are first diagnosed, we go through all the grief and mourning that we can possibility handle.  We get past that especially when see that our treatments are working and we start to get back part of the life we had before.  However, the pain and the waiting to get better can take a toll on a person’s patience.   This is because pain is something we never get used to but anger management is easier than pain management.

I get the anger that chronic pain sufferers feel because I live it every day.  I miss the old me – carefree, active, happy, and lovable all the time.  I long for days when my kids’, my nephews’ and nieces’ hugs didn’t hurt and when I didn’t hate to be touched.  I still work but at the end of the day, I feel like I have been run over by a monster truck, and some mornings I wake feeling like that.   While I am still not the same person I was two, three, four or five years ago, I have learned that chronic pain brings with it many emotions and anger is only one.  Managing anger take skills and these are skills we learn over time.  Sometimes, we need counseling to learn those skills and sometimes, we learn them through patience and perseverance.

The first thing we learn about managing anger is coping and that means realizing why we are anger.  Coping with chronic pain causes our tempers to flare more quickly and easily and as the pain worsens, we become angry because the pain is taking up too much of our time and our thoughts. When you need to vent, let the people in your life know you are not angry at them and ask them to listen.  This is a healthy way to express your angry rather than lashing out at everyone that comes your way.

Other ways of managing your anger include learning about the feelings that cause your anger, other than pain.  You can remove yourself when the anger gets too much, i.e. take a walk, write your feelings down, or find a quiet place to be alone.  Try deep breathing when you see your anger starting to take hold and remind yourself that you are responsible for managing your anger and anything that happens as a result of that anger.  Find something to relieve the stress such as watching a funny movie or show so that you can just forget about what hurts.  Cry if you have to or laugh at yourself but learn how to manage and be responsible for your anger.  Most of all, accept where you are now and think realistically about where you want to be.

My Own 

I have struggled with my own anger issues, first with finding a diagnosis and second, with my symptoms and pain getting worse.  Sometimes, I keep going and keep my anger inside, sometimes mumbling under my breath and even talking to myself in order to get through.  Sometimes, I cry and sometimes, I find a quiet place to be alone where I cannot overburden anyone else with my anger.  Other times, I call one of my sisters or a friend to vent.

I am not saying that the way I deal with my anger is correct, but it works for me.  I know that sometimes it keeps me doing everything that I need to do – working, taking care of my family, etc. – because it keeps my mind busy, my body active, and it keeps me from thinking about the pain.  I try every day to find ways to deal with my anger, in particular I remind myself that I am grateful for my family, my career, my advocacy work, and my mind even when my body isn’t working.   I have days where my pain requires a pity party and I deal with that, but I do NOT give myself permission to spread my anger to others.  Remember, the Law of the Garbage Truck. – don’t accept garbage and don’t spread it.

How do you deal with your anger?

The Faces of Chronic Pain



 
Yesterday, in the elevator on my way to my office, there were two girls in their early 20s discussing a male employee in their office who lives with chronic pain.  One of the girls made a comment saying that there was no way he could possibly live with so much pain, hold a job, and have a normal life.  She noted he had to be lying about the extent of his pain to get sympathy.  The second girl agreed that it is way not possible to live with chronic pain unless he was addicted to pain medication.  Generally, this was a conversation that I would have intervened in and corrected.  However, I was dealing with my own pain levels to say anything.
 
What I felt was frustration at the ignorance of people. How is possible not to understand the significance of chronic pain when over 40 million Americans are affected by some form of arthritis and have chronic pain that limits their daily activities. Nearly 40% of Americans suffer pain on a daily basis. Therefore, that means that 80 million people in this country live with pain.
 
Chronic pain is everywhere but it is personal because every person is affected differently.  Think about all the conditions that cause chronic pain: arthritis, migraines, carpal tunnel, nerve pain, back pain, injuries, and many more and this makes it hard for me to see that our society is still ignorant about the affects of chronic pain on people just like them. Chronic pain has no bias.  It affects adults and it affects children.  It does not care about race, age, or ethnicity.  
 
Sadly, there are no medical tests to prove how much pain a person is in. Doctors look at person’s history and the type of condition or conditions that a person has.  In addition, so many pain sufferers deal with family, friends, coworkers and even doctors who do not understand the extent of a person’s pain and treat the sufferer as a hypochondriac, a drug addict, or simply insist that the pain is in a person’s head.
 
Since my RA diagnosis, there has not been one joint in my body that have been spared from inflammation and pain.   My muscles ache on an almost daily basis from my fibromyalgia and I accept that this is now my life.  I live and work with chronic pain on a daily basis. I take Advil and use hot/cold compresses when my pain levels are high.  I go into work everyday despite the pain, take care of my children, continue to work on my master’s degree, and continue to advocate despite my levels of pain.  I don’t complain about my pain unless it is extreme or I am to a point of frustration.  I am not a hypochondriac and I am not a drug addict.  I am a wife, a mother, a sister, an aunt, a friend, and an employee and I am all of these things despite chronic pain. 
 
Pain takes the joy out of life and it makes getting through each day hard.  People who live with chronic pain have a quality of life that is altered. Do I think that the employee that the two girls were discussing is a hypochondriac or a drug addict?  Of course, I don’t.  Do I think he exaggerates his pain? I most definitely do not because I don’t know what it is like to live in his shoes because, again, pain is personal.  What I do believe is that our society is ignorant when it comes to chronic pain and the conditions associated with it.  If you were to walk past me in the grocery store, you wouldn’t see chronic pain affects my life on a daily basis because my pain is invisible to you.  At the same token, don’t simply push my pain aside unless you have walked five minutes in my shoes or in the shoes of anyone who says that they are in pain.

Parenting and Chronic Pain


When I check the searches to my site, this one stands out: How Can I be a Good Mother When I Suffer from Chronic Pain? This is a question that I ask myself almost daily but I realize that I am not alone here. There are thousands and even millions of young mothers trying to make sense of motherhood and chronic pain and while they shouldn’t really go together, they often do. I used to believe that we were a minority group but it turns out that there are millions who parents out there who live with the reality of chronic pain on a daily basis.

 

Parenting is hard but parenting with you live with chronic pain is really hard. Parenting means you draw attention from yourself and give it to your children because they need you. That is really hard when you are in pain daily but the sad reality is that you are not the only one suffering from the affects of your pain. Children whose parents suffer from chronic pain have many questions and are often insecure about the future. The best thing a parent can do is be open with children about pain and while this is difficult, it is a necessity to make your child feel at ease. 

 

I am a mother to a toddler and a preteen. My toddler understands that mommy hurts and I find that on the days that I am most stressed out with pain, he knows because he starts to act out. For example, the other night, I had an ice pack under neck because I was having excruciating pain in my neck and shoulder muscles. The pain was so bad that I was near tears. My toddler looked at me with the saddest eyes, laid down next to me and wanted to be held. I did not know how to respond but I knew he understood and one of the things I have learned is that I can’t hide my pain from my kids. I hugged my toddler, told him that mommy’s ouchie would go away soon and that I would play when him when the ouchie was gone. 

 

My ten year old has questions about how the future and whether things will get worse for me. I tell him that I am doing everything I can so that I do not get worse. He worries about our schedules and routines and often asks what he can do to help. He wants to know who will take care of his brother and him and wants to know that someone will. For me, my honesty holds more clout than my telling him that “I don’t know” or that “I will be better tomorrow” when he knows that may not be true. 

 

I don’t know what my response will be when they get older and if my condition worsens. I just know that life for them isn’t easy because I am not healthy. I also know that they understand empathy and a lot of their peers don’t and never will. I know that they know honesty and openness and they know how to be caring and sensitive. The best a parent can do is share their good days with their children because those are days that help them get through when bad pain days come. It is also important that parents stay on top of their children’s moods and behaviors because children are equally affected when a parent suffers from chronic pain. 

 

I have dealt with chronic pain for a number of years now and I know how challenging it makes parenting. I often find myself irritable and crabby and it does not make me a pleasant person. That is why I have learned the importance of being honest with my children and not making promises that I cannot keep. Hiding my pain is not good for any of us. I also see my ten year old trying to turn into my caregiver and that is where I have to draw the line and I think that is where every parent has to draw the line. As parents, we need to be the responsible parties for our health and for our children’s security. That means we have to continue to be parents with chronic pain who pay particular attention to how our children are affected.

Arthritis in the Bedroom


Sex as a Taboo Topic

When I asked to discuss this topic, I was a bit hesitant because I was not sure how the readers of this blog would respond. Moreover, I generally offer my personal experience when asked to write about a particular topic, and I was not prepared to do so in this instance. I did eventually decide that this was a topic worth discussing because there is so many people who feel like arthritis and chronic pain have no place in the bedroom, in particular those of us who suffer.
I also took into consideration that society looks the discussion of sex as taboo and talking about how it pertains to chronic pain is similar to opening Pandora’s Box. In general, people do not want to discuss sexuality because we do not want to talk about what happens behind closed doors. This even applies to couples in meaningful relationships because even they hide their feelings on this subject from each other.

I debated the subject and decided to forget the taboo and go ahead to discuss the effect that arthritis and chronic pain have on sexuality. After all, what do I have to lose?

What is Intimacy?
We all know what intimacy requires and includes. Ideally, it includes love. It can also include romance. Two additional critical components are mood and setting (hopefully, setting is ideal). Last, intimacy includes the act, with positions and physical attributes.

In addition to the requirements of intimacy, we can also look at why intimacy fails and why breakups and divorces occur. In looking at the reasons for failure, we see that there are challenges to successful relationships and that once successful relationships can fail. Moreover, when we consider the reasons for failure, we often forget that, in addition to emotional factors, physical factors can play a part in the success or failure of a relationship. Emotional factors are a given, as are intimate issues. Physical factors can include arthritis and chronic pain conditions.

Intimacy and Arthritis

The problems faced by arthritis sufferers are both emotional and physical. Emotional factors include self-doubt and poor body image. Physical factors include joint pain and other symptoms that are characteristic of a person’s specific arthritis condition. These concerns not only affect the patient, but they also affect that person’s partner as well. Barriers include physical pain, the ability to perform because of joint pain or other symptoms, expectations and personal needs- both sexual and emotional. This complete consensus can result into strong complications in a relationship.

What it all comes down to is that sex is supposed to be enjoyable, but for arthritis sufferers, it can be difficult. In additional to physical pain, psychological factors come into play. The nature of a couple’s sexual lifestyle prior to the diagnosis further complicates the situation. This can result into resentment, worry and fear for both partners.
The Effect of Arthritis on Sexual Intimacy

The effects of arthritis pain, stiffness, fatigue, lack of mobility, and swelled joints can make sex difficult, painful, and unappealing. When arthritis affects your back, your knees, your hips, ankles, etc., sex cannot possibly be enjoyable. In addition, side effects of medications can diminish sexual desire and cause other problems such as vaginal dryness, erectile dysfunction, inability to orgasm, and fatigue that also lessen the desire to be intimate. Then, as the sufferer, you feel sexually unattractive and, as a result, you cannot feel relaxed enough to enjoy the actual act. These feelings bring with them anxiety and stress and further worsen our symptoms.

When you sufferer from arthritis, your partner may not necessarily be aware of the changes happening to your body – both physical and emotional. Your partner cannot understand your pain levels, nor can he or she know whether you are using pain levels as an excuse not to be intimate or whether your excuses are legit. All of these factors can lead to the failure of a relationship when the real and best answer comes down to communication.
What can we do?
Change Expectations

Sexual intimacy is not just about achieving an orgasm or the act itself. If we can change this perception, we can change our expectations. Taking a slower approach to intimacy works best for partners when they share mutual respect, care, trust and love for each other. Moreover, barriers can be approached through communication on what is comfortable and what is not. Arthritis does not necessarily affect sexual organs but the physical effects of the disease can make intercourse painful. Moreover, emotions come into play because of those physical aspects. Therefore, couples must address the emotional aspects, as well as the physical, openly and honestly.

Communicate

Expressing fears and concerns allows the partner without arthritis to support and reassure. In addition, talking about fears will allow the arthritis sufferer to let go. What the arthritis sufferer must take in mind is that his or her fears can be viewed as rejection and vice versa applies. Rejection turns into distance and emotional breakdown of the relationship.

If these topics are sensitive initially, writing a letter to a partner to express fears and concerns can be another approach, but the next step would be to talk openly about what has been written down.

Sexual Wellbeing and Getting Creative

Psychological wellbeing and social support can contribute to a fulfilling sexual life. By learning to separate the emotional aspects of arthritis and working creatively to deal with the physical aspects, couples can take a more practical approach in dealing with changes brought about by arthritis and in turn, make accommodations for one another when dealing sexual intimacy.

Changing sexual habits and planning is the first place a couple can start in order to continue to have a fulfilling sex life. For example, if the arthritis sufferer wakes up stiff and in pain in the morning, sexual intercourse can be saved for later in the day or at night prior to bedtime. If being resting helps, perhaps the arthritis sufferer can a nap prior rather than avoiding the act altogether simply because of factors that contribute to the inability to perform. If muscles and joint become tense during sex, then a perhaps considering a warm bath to sooth muscles prior to sexual intimacy may help to ease those tensions. Other considerations can include taking pain medications prior so that its maximum effects happens during sex, using massage to help ease muscles and joints as foreplay, using pillows or rolled sheets to support joints, or even pacing yourself to conserve your energy for you and your partner. Vaginal dryness can be addressed by using over the counter lubricant. Other more difficult issues, such as erectile dysfunction, may require a medical perspective. What it all comes down to is that couples have to be willing to work together in order to allow for intimacy to be fulfilling for both partners.
Sexual intimacy should not make the disease worse. By focusing on the physical and emotional aspects rather than intercourse and orgasm, being creative, and open and honest with each another, couples affected by arthritis can continue to enjoy sex and find satisfaction with intimacy.

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If you like have a question related to rheumatoid arthritis or fibromyalgia that you would like me to answer, please feel free to either leave it in a comment box anytime (leave your email/website link so I can notify you when it is answered) or send me an email to lanab2005@msn.com. I will do my best to answer your question. See Disclaimer.

Mornings and Chronic Pain


Chronic pain sufferers are not morning persons and if you sufferer from chronic pain, you know exactly why. Morning pain is very common for those of us who suffer from various pain conditions. You feel fine when you go to bed and then you awake to pain and stiffness first thing in the morning. Some days you feel like you have been run over with a truck and other days, you feel stiff as a board. There is really no magic formula when it comes to what type of morning you will have. 

In the first episode of the new season of Doctor Who when David Tennant regenerates into Matt Smith, the Doctor takes inventory to make sure he is still intact.

http://www.youtube.com/v/TsVYit2WSsY?fs=1&hl=en_US

Most mornings, I feel like the doctor felt at that moment. “Arms, legs . . . still intact.” Hand pain, foot pain, neck pain . . . Sore but functional and in tact. It may feel like I am not intact because of the pain, but I am. Nothing is missing or broken, just painful. 
In my dreams, I am healthy and not in pain. In nightmares, I am wheelchair bound. My dreams are shattered with I awake in the morning but my nightmares are not reality. It is either disappointment or relief. Regardless of how much I have learned about my conditions, I am a slow learner when it comes to accepting the reality of my conditions. On the other hand, I might just be a believer of hope and miracles.

Some mornings I limp to the bathroom. Other mornings, I make it with some stiffness and there are mornings where I need to use the walls for support because I am afraid to lose my balance. The thing about mornings is that there are not unpredictable. While I know that I will wake up in pain, I never know the extent of that pain until my alarm clock goes off. I have not had a pain free morning in over two years. However, I do have good days on the mornings where I awake with some achiness and stiffness so they are, if anything, indicators of better days. But I don’t actually recall a pain free morning and if anything, mornings are reminder that remission is so far away for me.

Aside from the pain, I deal with what I call “fibromyalgia mornings.” These are the mornings where in addition to pain, I wake up with an upset stomach, nausea, a headache and/or neck ache, and of course, pain – like I have run over by a truck while I slept. These are the days where I really want to call in sick and just sleep, but I don’t think my employers would keep me if I did that every time I felt this awful. To me, those mornings are the most challenging.

I know that I am not immune to illness and pain. In fact, I am reminded daily and while I want to give into the pain and the ill feelings, I know that I can’t. The worst thing I can do is to give in and lay in bed all day. I need to get up, go out and live my life. I need to show my body that I am capable and that my conditions don’t get to win. I need to succeed to feel to somewhat “normal,” and I need to feel like I can work towards improving my health. Letting my diseases win won’t going to get me anywhere but bedridden.

The only advice I can offer here is not to give into the bad days and to keep moving despite painful mornings. Don’t allow yourself to get stuck in the cycle of impossibility and strive for little victories because little victories can become bigger ones. I have learned that I can still set achievable goals; hold myself accountable for all my responsibilities, and I can still be successful. My definition of success may have changed but I have not. I am still as strong and as stubborn as I have always been.

I did not sign up for this – neither did my family


The National Institutes of Health estimates up to 23.5 million Americans suffer from autoimmune disease and that the number is rising. Unfortunately, as we all know, autoimmune diseases have no cures. It is a lifetime commitment that none of us signed up for. I sure did not sign up and neither did my family. I have a tendency to hide how I feel until I can’t hide it anymore and then, I am a force to be reckoned with. I know all the signs of a flare coming on, and the fact that all of sudden I want to cry for no apparent reason is a first clear indication.

I only pray that my family learns to forgive the person that I become when I am struggling with the bad days. Yesterday, I nearly tore my sister’s head off when she begged me to get out of cleaning the kitchen last night because despite my flare up, I wanted to feel productive. I did not want my RA to take away from me my independence because clearly, that is what was happening from the most that the flare started.

For the last few days, I felt worn down regardless of the fact that I did not do anything to wear me down. However, I gave myself a good excuse with the weather and heat, and considering an ozone warning was issued made it a good enough excuse. But, as the weekend moved forward, I started to feel weak and my hands were showing signs of that weakness. I kept moving despite this desperate need to just want to find some place to hide and cry. I hate when my hands do not want to do their job because I feel not just physically weak but also helpless. With my eyes, skin, and joints following suit, waking up this morning was the last thing I wanted to do.

The question of whether humidity worsens RA symptoms is obvious to any sufferer but research has failed to recognize that specific climate can prevent or reduce the effects of RA. Even moving to a new place with different climate does not seem to have an effect on the long-term difference in a person’s RA. Hippocrates, the Greek physicist (400 B.C), was the first to write that weather affects people. Humidity does, in fact, have a direct effect on the skin because it causes the skin to expand slightly when humidity rises and when air is dry, skin contracts. This explains why humidity changes cause pain to those who have scar tissue. Further, air pressure and temperature changes affect people with RA in the same way to pressure changes cause headaches.

Patients with arthritis can claim they can predict the weather changes. In fact, the University of Pennsylvania, a few years back, conducted a study where they built a climate chamber and used volunteers as study controls. The researchers were able to provide with a high degree of certainty that a combination of humidity and low barometric pressure was in fact associated with joint aching and stiffness. S0 the next time someone tells you that arthritis patients cannot predict the weather, you can disagree by telling them that arthritis joints are already inflamed and under pressure because of increased fluid in the joints and if you lower barometric pressure, the inflamed joint will swell and stretch the already inflamed joint lining.

When I got into the car this morning with my ten year old, I started to rant and rave for the heck of it. I wanted to complain to someone about how overburdened I felt, and when my son said, “Mom, I am just a kid. Why are you telling me this?” I had to take a deep breath and apologize. I had no right to complain to a child about how worn down my conditions make me feel. I know I didn’t sign up for this, but my kids and other family members did not either. Just because I feel down right awful and overburdened by my conditions does not give me a right to take it out on others like my sister who was trying to help or my son who did not need to hear about the worries of adulthood.

My conditions are not a license to feel angry or bitter at the world, at God, or at the situation. After I dropped my son off, I took a death breath and prayed for strength. I asked God to guide me through this incredible burden I call “life with chronic illness” and it would be easier if not for the “illness” part. I did not sign up for this and neither did my family. None of us did and getting angry or bitter doesn’t change a thing. The flare will pass and it will be a distant memory. In the meantime, I can continue to pray for and look for strength and support where I can find it. My family knows when I am flaring and they do what they can to help or to just stay out of my way. I am grateful for having them in my life and sometimes, I don’t always see this clearly enough when I am physically hurting.

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I have an upcoming review for a a couple of great products sold by CSN Stores that can add convenience to your life if you suffer from arthritic or weak hands.  CSN Stores is a Boston-based online retailer that sells everything you need whether it is lights, toys, shoes, or housewares.

Does asking for help make you feel like a burden to others?


When you are diagnosed with a chronic illness, you don’t really know what happens next, or when. You are not sure what course the disease takes, but at some point, you realize that the disease will limit you requiring you to seek out the assistance of your loved ones with tasks that you had always done on your own. So, it is not uncommon to feel like a burden to your partner and your family.

I have blogged many times about how weak I feel when I realize I need to ask help from the very people I have always helped. It is hard when so many have relied on you to be strong for them, and one day, you realize that you need them in order to be strong. Sometimes, you even need them to help you with things that families and partners do not necessarily do for their partners and loved ones. It can be something as simple as helping you out of bed on a morning where the pain is unbearable or having to ask someone to drop off your kids to school one day because you feel too sick to drive. Then, there are the times when our loved ones want us to spend time with them and we are not able to. With any of these scenarios, it is pretty easy to feel like you are a burden to others.

There is not much you can do about having to ask others for help but letting others now how much you appreciate their assistance can lessen how bad you feel when you have to ask for help. Quite often, we get so plagued in how bad we feel physically and emotionally that we forget about the people who are there in our lives because they love us. When you are able to, do something nice in return. That is all there is to it, because kindness can go a long ways.

Another way of showing your loved ones that you appreciate them is to stop dwelling and focusing on your condition because the attitude you reflect affects them as well. You may be able to spend as much time with your loved ones as you used to, but don’t add to the misery. When you can’t spend time with them, tell them that even though you can’t, you would like to, and when you are able to, you will.

The physical burden is nothing compared to the emotional burden. Your family wants to help you and they will, if you let them, if you appreciate them, and if you remain positive around them. Do not rely on you loved ones for emotional strength either because no one can provide emotional strength for you; you can only provide that for yourself. Also, understand that people get value from helping others, and that is a personal satisfaction. In other words, they are helping because they want to, not because they have to or else, they would not be a part of your life.

I wrote in a previous post that I, too, start dwelling just like anyone else. Sometimes, I am not even sure whether I can take the next set of blows that life throws at me, but you know what? I do, each and every time. I do look at my own life and wonder whether I could be a better mother, wife, daughter or sister if chronic illness wasn’t a part of my life. However, I know and understand that chronic illness is a part of my life, whether I like it or not, and there is no point in all the “what ifs”.

People always remind me how tough I am and how they couldn’t possibly be as strong as I am if faced with the same obstacles. The fact is, I am sure that they would because when it comes to chronic illness, we have to decide whether we want to live happily or die miserably. Let’s face it – that is all there is too it. You can choose to be strong and not let the disease win or you can choose to dwell and let the disease burden you. The latter option will only make your health go down hill.

The post came to me today after spending four days in the slumber dealing the worst fibromyalgia headache that I have ever dealt with since my diagnoses. It was also much worse than any RA flare-up I have had. In fact, I am still dealing with the remnants of that headache. It was so bad that I called off work, skipped class on Monday night, and even asked for an extension on my class assignments that were due yesterday. I found myself not able to do anything including take care of my own children. My kids had to eat fast food and pizza for four days, because my husband apparently does not know how to turn on the stove or use any other appliance or gadget in our kitchen. My ten year old took care of his baby brother while my husband was at work. I would have called in my mom, sister, and even a friend or two, if the nightmare headache lasted any longer. Let’s just say that the Advil, Aleve, and Excedrin have done a number on my stomach and barely did anything to relieve the pain. Ice packs, sleeping, and pain patches were also to no avail.

This was the first time that I did not feel like a burden asking for help. I didn’t have a choice, of course, but at the same token, I realized that I had to. That is the thing with asking for help. You have to accept the fact that you cannot always do it all, and go from there. Just trust in those that love you and you’ll be just fine.

Anonymous letter to normal people


I found this over at Billy Bob’s blog.

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:


Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.


In the spirit of informing those who wish to understand …


… These are the things that I would like you to understand about me before you judge me…


Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.


Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.


Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.


Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.


Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.


In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.


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