Can You, and Should You, Live Your Chronic Life Online?

Over the weekend I was reading some articles on social media etiquette.  This was after a couple of weird online encounters which got me thinking about the subject. So I searched to see what others were saying and found some good posts (see Related Articles below).

But as a person living with chronic illness, I was a little taken aback by this rule from the article Rules Of Facebook Etiquette: Tips To Help Keep Friends:

"Social media may be great for sharing and keeping in touch with people but it's not a replacement for human contact."

I understand that for healthy folks this rule might apply.  But for those of us who are sick, can this, and should this, really apply to us?

First Impression

My first thought was, Yes, I would love to have regular, in-person contact with my friends who live in Los Angeles.  This absolutely would be a wonderful and healthy thing for me to do!  If I was able to do this, then social media would definitely be an interim way to connect with friends between in-person visits.

Ah, but only if I was able to do this.

Obstacle #1: My Chronic Illnesses

The first obstacle for me to overcome is my abundance of disabling chronic illness symptoms.  After 8 years, I am doing much better at managing these symptoms.  But managing my symptoms is NOT the same as having control over them, and I still periodically get flare-ups and new, unexpected symptoms.

That makes getting together with others something that happens infrequently; my in-person social life is only an option when I am feeling OK.

Obstacle #2: Transportation

If feeling well enough to see people is the first hurdle, then getting to the place where my friend are at is the second.

This is a problem of logistics and my health really does dictate what works and what doesn't.  So to get together with a friend, these are the conditions:

• If I am able to drive, my friends need to meet me inside the radius of my comfortable driving distance
• If I am unable to drive, my friends need to come to my place and get me, then drive us to our destination

"But there has to be other ways for you to get around, right?" Believe me, I've explored other transportation options in Los Angeles and it is a nightmare.

The bus system in L.A. is overcrowded, slow, not very disabled-friendly and requires more walking than I am currently able to do.  Plus it puts me at risk for heat-related illnesses when waiting at unsheltered bus stops or riding in a crowded bus.  

Paratransit disenrolled me from the program when I told them I had a scooter.  In hindsight, that was a mistake on my part, because a travel scooter is really just the wimpy cousin of the full-size scooter, which is what I would really need to travel around by bus.  I could have appealed and gone back that Summer to re-qualify, but declined since their evaluation center in East Los Angeles is a sweltering hot warehouse space. Why?  Because it doesn't have any air-conditioning!

Other options are taxi cabs and private car services, but they are just too expensive--especially since during the L.A. rush hour it can take an hour just to go just 5 miles.  Seriously.

My Opinion

Wow, let's face it: when you are a sick chick, "getting together with friends" takes on whole new meaning.  It probably doesn't help that I live in Los Angeles either, fondly referred to as the "Car Capital of the World."

That said, I still hope that one day I am able to recover enough so that my health is no longer an obstacle to social interaction.

When chronic illness really limits that in-person option, isn't it nice to know there is at least one place to turn to for social support?  I get it that connecting in social media is not the same as connecting in-person.  But those outside our chronic illness community fail to recognize this as a concern worthy of attention and funding. After all, there are senior centers for the elderly, a place where they can go to socialize and recreate, which provide transportation so they can get there.  Why isn't there a real-world place for adults with chronic illness to meet, socialize and come together?

Online is better than nothing!  I know if I didn't have the option of connecting with others via the Internet, I would definitely feel much more alone, lonely and unsupported.  It fills a pretty important need for me, one that isn't really being met anywhere else.

But enough about me.  What do you think about this topic?  Leave me a comment and let me know.

Related articles 

• The Problem with Social Media and Health - KevinMD
• Social Networks a Lifeline to the Chronically Ill - New York Times
• Rules Of Facebook Etiquette: Tips To Help Keep Friends - Huffington Post
• Facebook Etiquette: How Do I Unfriend Someone? - Mashable

Mission 2011: Finding Social Support Through Social Media

photo by crirez

My Life Resembles a Commercial 

Have you seen that commercial on TV with the young woman who is trying to get her parents connected on Facebook?  She comments that they only have 19 friends there; meanwhile her parents out mountain biking with their friends.  She, on the other hand, has 687 friends on Facebook and is sitting at home in front of her computer.

I got a chuckle watching that commercial.

Then I went to lunch with a very good friend of mine.  She has been diagnosed with a pretty awful illness, Lymphangioleiomyomatosis (LAM), that one day will limit her ability to do things.  So when I told her how I use social media to connect to other people, she told me she is trying to be like those parents.  She wants to get out there and experience as much of life as she can before her life resembles, well, mine.

We both got a chuckle out of her comment.

My Social Reality

I can't be mad at her for pointing out the obvious.  She is blessed because right now her illness isn't making her mostly housebound and unable to work.  She doesn't spend much time on social media sites because she is busy with real life.

If I was in her position, I wouldn't be spending much time with social media either.

The truth of my current situation is that I spend a lot of my time alone.  I have a very limited ability to participate in social activities because of chronic and persistent pain and fatigue. When I can participate, it takes extensive planning on my part, as well as a lot of assistance from my family and friends to make it happen.

Even then, there is always the chance that I might have to cancel at the last minute because my body won't cooperate.

To be honest, I don't see a lot of my real life, in-person friends very often because my very specific requirements for getting together don't mesh with their lifestyles.  That's just the way it is. 

From Real Life Disappointment...

I guess I knew this was going to happen, which is why when I first was diagnosed with fibromyalgia and chronic pain I made a huge effort to find a weekly in-person support group.  I had such a positive experience with the weekly young adult cancer support group I participated in from 1988 to 1992.  I wanted that same kind of experience again as I began to face a life with chronic illness.

So I searched high and low...and came up empty handed.  

The closest I got was a monthly support group, which I tried for a while. With chronic illness making life pretty unpredictable for myself and others, the group was not well attended.  People came and went, often before I was able to get their contact information so we could stay in touch.  Then when I lost my transportation assistance, which was key to my regular attendance, I stopped going too.

...To Online Friendships

Eventually, I turned to the Internet.  It was actually one of my real life friends who pushed me in the direction of blogging, Twitter and Facebook.  (She is now one of those real life friends I hardly see anymore--yes, that is ironic, isn't it?)

From that initial exposure, I went on to discover websites and blogs that included community building tools like forums and chats that took meeting people and getting support to a whole new level.  Through my blogging, I discovered blog carnivals where I met other bloggers and worked collaboratively with them around issues and themes of mutual interest.

Flash forward to today and I thank the Universe every day that websites like Facebook, Blogger and Twitter exist.

Without them, I would be really lonely...

I have more to say on the topic of social support and social media, so please come back and join me next Thursday when I plan to continue this discussion.

Related articles

• Mission 2011: Friendship Fresh Start (ohmyachesandpains.info)

Reader Questions: You Asked, I Answered

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I challenged you to Ask Me Anything and I'm glad you have taken me up on my offer. So today I want to answer some questions I have recently received:

Q. How do I get pain relief for chronic myalgia? My general doctor seems useless and can't find the cause. I've been to every specialist to find the cause. Do I have to personally schedule an appointment with a pain specialist?

A. I am fortunate enough to have the type of medical insurance that allows me to self-refer to a specialist. I have taken advantage of this option numerous times during both the diagnosis and treatment phases of my chronic pain conditions. If you don't have that option, don't give up and let your managed care health insurance stand in the way of getting the care you need. I suggest calling them if your doctor won't give you a referral and ask to speak to a care manager. You might also consider changing primary care doctors to see if another physician might be better able to address your medical needs.

Personally, I have seen specialists in many different fields, including neurology, rheumatology, rehabilitative medicine and pain management. Some I see on an ongoing basis; others consult and then ask my primary care doctor to treat me and follow-up on their recommendations.

While I agree that having your primary care doctor do the referring is the ideal situation, I have come to accept that primary care doctors don't always do this.

Honestly, I think you have answered your question for yourself when you asked, "Do I have to personally schedule an appointment with a pain specialist?" One way to look at this task is that it is burdensome, time-consuming and stressful. You can also look at it as taking a step towards actively participating in your health care and being your own health advocate.

I think it is reasonable to ask for pain relief from your doctors and I hope you find the answers and treatment options you are seeking. That said, I know from my own experiences that finding pain relief is sometimes a difficult, complex, perplexing and often elusive proposition. However, I have not given up hope that science will continue to discover what causes physical pain and, more importantly, what it takes to treat it fully and successfully.

Q. How do you deal with the sadness and or guilt that comes along with missing family or other types of social occasions? I find that's when it hits me the most. It's like my condition slaps me in the face. I would love to hear how you get through that.

A. Being a very outgoing and social person, this is a consequence of chronic illness I actively confront on a ongoing basis.

I have gone from feeling very sad and inadequate in my ability to be a good friend to accepting that I live life at a much different pace now which precludes a lot of social interactions. I'd like to say that I have processed this issue and have come to a place of understanding and peace, but the truth is my feelings on this subject can vary as much as the seasons.

In the end, what helps me the most is keeping these thoughts in mind:

• Socializing is an important part of my life.
• Socializing takes a lot of energy, both physically and mentally.
  
• I choose to actively manage my chronic pain and fatigue, which often means limiting my social interactions.
• I can ignore my need to limit my social interactions, but then I must be willing to live with flare-ups and a lower level of functioning.
  
• I can choose to be unhappy about my limited social life and steep in my grief and guilt.
• I can choose to relish the social life I can participate in and allow those moments to sustain me until the next social event I am able to attend.

I've also explored many new and different ways to connect with friends, family and others, like Twitter, Facebook, blogs, online forums and chats and Skype. Sure, they aren't the same as the social activities I used to be able to do when I was "healthy." But I have realized that comparing my current self with my past self prevent me from enjoying what I can do now despite my chronic illnesses.

So yes, chronic illness still does occasionally slap me in the face, but really it's just a reminder that I need to keep reframing my perspective on my current situation and focusing on what is possible so I don't miss out on what socializing I can enjoy.

Related articles

• Do You Need a Pain Specialist? (everydayhealth.com)
• Treating Fibromyalgia Pain: Medication Options (webmd.com)
• Patient Money: Treating Chronic Pain and Managing the Bills (nytimes.com)

Question of the Week: Where Do You Find New Friends?

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This weekend reminded me, once again, that it's pretty hard to get together with your healthy friends when you live a mostly homebound life because chronic illness.

I've talked before about how my life resembles aspects of the fable The Tortoise and the Hare.

Once again, it hits home for me about how chronic illness has transformed me from a hare into a tortoise. In the fable, the tortoise wins the race. But in real life, I am the loser. My friends are still all hares and they are moving fast. I can't keep up, which means I keep missing out on all the fun.

I'm missing out because:

• I physically can't drive in traffic 30 to 45 minutes each way to meet up with my friends
• I'm broke because I live on Social Security Disability
  
• I don't do well in the crowded, noisy places where all the fun is at
• I need to be sitting down all the time--no standing, dancing, walking, bowling, etc.
  
• even when I really push myself, I can't last more than a few hours doing any activity
  

So instead of being disappointed all the time when I'm not invited or plans don't work out, I started thinking maybe I should broaden my social network and befriend some people who are tortoises like me. Only, I have no idea how I would even go about doing this. I mean, where do young, hip, fun tortoises hang out?

So as I pondered this question while sitting down taking my shower, I realized that my real problem was I that I just wasn't old enough yet. Sad to say, I think the real solution to my problem is to wait until I am a senior citizen.

Think about it: there are senior centers all across the country and their sole purpose is to engage older people. These centers offer transportation, meals, activities and opportunities for socializing. When it comes to services designed to get you out of the house and into the community, senior citizens have a huge advantage over younger people living with disabilities.

Which made me sad to envision that my current, middle-aged years living with chronic, disabling conditions were going to be my lonely, homebound years.

But maybe I am wrong.

Maybe you, my readers know something I do not.

So this week I am asking you to share with me your advice on how I can meet new people who are looking for a tortoise for a friend. People who live close to me. People that I can get together with, face-to-face, and go to the movies, get a bite to eat or hang out at a quiet neighborhood coffee shop every once in a while. People who don't mind slowing down and spending some time with a tortoise...

I am really interested in hearing what you have to say on this subject, either by leaving me a comment here or heading over to the Oh My Aches and Pains Facebook page and joining the discussion there.

The Amazing Internet: What Works for Those With Invisible Illness

Image by Valerie Reneé via Flickr

I can't wait for the beginning of the Invisible Illness Week 5 Day Virtual Conference. Anticipating it today, I thought about how integral the Internet is to my ability to reach out to other people living with chronic illnesses. From a self-help weekly group via a listserv, to several message boards, forums and chat rooms to basic email contact with friends and family, I find myself connecting to people each and every day. In contrast, if I had to rely solely on getting out of the house to make contact with other people, I'd be lucky to connect with other people once a week. More likely, based on my experience with the alumni group at the Cedars Sinai Chronic Pain and Fibromyalgia Program, interacting with other people would happen about once a month.

As Lisa Copen explains in her post Chronically Ill Are Perfect Audience for Virtual Conference:

Hard beds, traveling expenses, long walks to conference rooms, peers going overboard on the perfume, and extreme fatigue are predictably part of your average conference. For the chronically ill, however, these inconveniences oftentimes make attending an actual conference impossible. National Invisible Chronic Illness Awareness Week celebrates its seventh year, and with the power of social networking, 2009’s “virtual” conference September 14-18, 2009 is sure to be a success.

I totally agree with her! Beyond eliminating the problems of getting there, surviving the trip and making through each day, a virtual conference offers the ultimate in convenience. There are so many different ways to participate. You can experience each session live by listening online at Blog Talk Radio. During the live seminar, you can call in to ask speakers your questions or submit questions via the chat function. Not able to log on and tune in for the live session? No problem. Listen to the seminar on your schedule through the Invisible Illness website or at iTunes.

What to try it out in advance? You can listen to last year's sessions at Blog Talk Radio right now.

To see the entire schedule of speakers for Invisible Illness Week 2009, click here.

Like every good conference, there is even a place to go and meet the speakers and network with other participants. It's called the Invisible Illness Week Group at the Sunroom social network of Rest Ministries. This is also where you will find any handouts that the speakers have provided. Make sure you go and join this group before the virtual conference starts on Monday so you are ready to participate from the start of the event.

So what so you think? Is a virtual conference for you? Give it a try and let me know what you think by leaving a comment below.

Now it's time for some fun. This YouTube video features an early Canadian news report from the late 1980's or early 1990's about the Internet and how it was "catching on." It is a hilariously and nostalgic look back at the recent past, when we dialed up to connect and interacting online with people around the world was still a novelty.

I Need Tomorrow to Recover From The Weekend...

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I remember when I longed for the weekends to arrive, back when I was working full-time. That was only five short years ago, but it seems like a whole different lifetime to me now. I know that everything changes, regardless of whether or not you have chronic illness, but what surprises me is how living with chronic illness making everything seem paradoxical.

How I have come to view the weekends is a very good example. For many people, the weekends represent a pleasant and welcome break from work and the daily grind of the week. Weekends epitomize freedom, fun and frolic. As my friend Cynthia wrote on her blog, weekends are for wearing flip flops, the casual and carefree symbol of the weekend.

For me, the weekend can be perilous. It starts with disruptions in my sleep schedule, like when my husband wants to go to bed later and sleep in the next morning. When he gets up to go run his errands Saturday morning, he inadvertently wakes me up with this chain reaction: he shuts the bedroom door, wakes the dogs up and takes them out, the dogs start barking, I get woken up. To top it off, the puppy starts whining when he leaves and I often can't get back to sleep.

Another highlight of the weekend that I look forward to is having my husband at home all day. However, taking advantage of his presence gets me in some trouble. During the weekend, I try to engage him in the tasks that require his assistance and I wind up being torn between trying to get more things accomplished versus sticking to my rest and pacing routines. While I often manage to avoid getting flared up, I definitely spend more time out of my energy envelope that I usually do during the week.

Finally, the weekend has always been synonymous with getting together with family and friends. Problem is, socializing with my friends and family is more difficult for me now. I still yearn for social contact and enjoy being with other people, but physically and cognitively socializing has become exhausting and uncomfortable. In a noisy setting, I struggle with being both easily distracted and overwhelmed by the stimuli. The mere act of paying attention and engaging in conservation drains me. Sitting for long periods of time can be physically uncomfortable, but where in public can you lie down for a few minutes? Going to the movies has become a special form of torture, with the booming percussion, seat shaking loud sound effects and overwhelming visuals. And forget about dinner and a movie: it's one or the other for me now.

The real danger for me, just like good days, is the push to keep up and keep going at the pace my companions set. I am often very distracted and unaware of myself in the presence of other people, even when it is just my husband, and frequently discover that I have spent my social time way out of my energy envelope by the time I finally arrive back home. I manage the danger of social contact by limiting the number of social engagements I committed to and getting extra rest before, during (if possible) and after the outing.

So for me, the weekends have lost some of their shine and rosy glow. I won't go as far as to say that I no longer enjoy the weekends, but the weekends are definitely a challenge. So after a three-day weekend for my husband, I really need tomorrow to recover. You know, kick off those flip flops, lay down and rest.

Question #3: Are my social interactions satisfying?

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So I'm back on track now and moving on to question number three, Are my social interactions satisfying?, from my post earlier in the week Can Routine Help Me Manage My Fibromyalgia?

The first words that come to mind are, "No, of course not!" Compared to my life before chronic illness, I could do anything social with my family and friends, whenever I wanted and for however long as I wanted. Driving out to the San Fernando Valley to meet up with Cyndie to go to dinner and a movie? No problem! Heading out to Las Vegas for a week of vacation? Let's go! Bowling on Saturday evening then going to Pepy's for dinner? Every week please! Running errands and shopping all day Sunday? Bring it on!

Well, not any more for me...

My social life has drastically changed. For starters, I ask my friends to come to my house and when they get here I ask them to drive if we have plans to go somewhere else. Then we chose ONE thing to do: movie, out to eat, shopping, etc. A lot of physical activities, like bowling at Mar Vista Lanes, walking down in Marina del Rey and riding along the bike path at the beach, are no longer are options. Many trips require me to bring along my mobility scooter or cane-seat combination. The closer our destination and the smaller the venue, the better. Long trips in the car, big crowds and loud noise increase the speed with which I become drained and need to return home to rest.

Despite all the challenges, I do go out a few times a month. I am fortunate to have friends who understand and come to me. I have a husband that doesn't mind staying home more. I have gotten used to my hubby leaving me home alone three times a week so he can continue bowling in the leagues and tornaments that before we participated in together. I use the accomodations available for persons with disabilities at theaters and other public venues, which make it a bit easier to enjoy the festivities. I've also learned that if I schedule extra rest before, during and after a social outing, going out with family and friends doesn't always mean a flare-up of my pain and fatigue symptoms.

I wish I could still have the social life I had before I became chronically ill, don't get me wrong. Since that is not possible right now, I employ the techniques of pacing so I can play. I have discovered how to enjoy the limited social interactions I can engage in without adverse physical consequences.