Tuesday, November 29, 2011

The Invisible Wall

We have returned, like conquering heroes, from visiting my family in Rochester for the Thanksgiving weekend.  We finally made it up there, after a 2-year hiatus, the trip went well, and we are all still in one piece (more or less).

I thoroughly enjoyed spending time with my family, but, of course, it was tiring.  I managed better this time than past trips, though, which tells me that I am definitely doing a little better these days (probably due mainly to beta blockers and Immunovir).  I noticed I slept better; usually sleeping away from home is a huge struggle.

I have several different branches of extended family in Rochester, so we had some sort of large social event every day, from Thursday through Saturday, which was like a marathon for me!  A single social event can totally wipe me out.  But we have learned from past mistakes and scheduled in plenty of quiet, down time at my Dad’s house in between.  In the old days, we would schedule three different visits in a single day!  I also went up to bed by about 9 pm every night, and I think that helped, too.

I thoroughly enjoyed spending time with my family, but my illness forms an invisible wall that now keeps me somewhat separate from everyone else.  There are a couple of people who understand how challenging our daily lives are, but most of my family has no idea how profoundly our illnesses affect every moment of our lives.  Of course, I don’t want to talk about our illnesses at social events; that would only make people feel uncomfortable.  It’s just that I am living in a completely different world than everyone else.

It’s not that I am hiding anything on purpose or that they are uncaring.  In fact, all of my family knows about our illnesses and most are kind and compassionate, but, as we all know, it’s just impossible for anyone not living with these illnesses to fully understand how completely they affect every aspect of our lives.  So, even in the midst of talking and laughing with my family members, I still feel somewhat apart from them.

When everyone else is standing around the kitchen (as people tend to do at social gatherings!), I am sitting down, at about the height of their belly buttons.  While others are enjoying beer, wine, and lots of cheesy appetizers, I am sipping ice water and nibbling on plain tortilla chips.  We can’t attend gatherings in the afternoon because I need my nap in order to make it through the rest of the day.  I hated having to sit on the sidelines while the rest of my family played football on Saturday.

More than those physical differences, though, are the differences that come up during conversation.  My cousins were all trading stories about taking their kids to amusement parks, Disney World, water parks, etc.  Those kinds of places are like Kryptonite for someone with CFS!  They began making plans for all of us to meet up at Hershey Park next summer to spend a weekend together (it’s a huge amusement park and water park); I could never manage a single day there and Jamie probably couldn’t right now either.

My best friend from high school has taken up running…not just any running, but marathons!  She’s running 26.2 miles at a time, and I feel awful tonight because I went to the grocery store today.  She also talked about triathlons, how much fun spinning class is, her job, and all the travel and hiking she’s been doing.  Even talking about our kids is tough because Jamie is so far from a normal teen right now.  I love her – she is still my soul sister – but we seem to have little in common anymore.  It just makes me kind of sad, you know?

I don’t want to feel these barriers between me and my loved ones.  I’m used to being a what-you-see-is-what-you-get kind of person, but that’s no longer true.  People look at me and I seem normal and healthy, but I’m not.  I’m missing the emotional closeness that comes from shared experiences.  Maybe this is why I enjoy my book groups so much – discussing books is one thing I can do just like everyone else.

I hope this doesn’t sound whiny.  I didn’t mean to complain because I truly did enjoy our trip and loved seeing my family and my old friend.  I just felt separated from them by this invisible barrier all weekend so that my happy social occasions were slightly marred. 

And then I realized there were people I could talk to who would totally understand…thanks for listening.

P.S. I discussed similar issues with social events five years ago in my post, Living in a World Apart.  I guess things haven't changed very much!


Anonymous said...

I so totally hear what you're saying. People mean well, but if they don't live it, they don't get it.

I'm sure the mothers at my son's school don't fully grasp that when I say I'm going home to have a rest before the end of the school day, that means climbing into bed, pulling up the covers and at the very least dozing for several hours before staggering up to go and get him from school. It's not sitting down for five minutes with a cup of tea and then going on to the next thing.

I don't go to work, but my day is as barred from doing home things or my things as that of anyone working because I'm in bed during that time to have enough energy for after school time. I can get away with not doing that now and then, but not constantly.

He's on his second day off school sick right now and I can feel my brain shutting down from the lack of that rest.

(Sorry, feeling a bit tired and frustrated myself right now and when I started typing it all poured out.)

Anonymous said...

Sue, you wrote: "I'm missing the emotional closeness that comes with shared experiences."

Boy, I couldn't have said it better. So true, so true.

Renee said...

Oh, Sue..you do not sound whiny at all...you are just being honest about the losses in your life and here in the world of people who understand we are able to listen and nod our heads in agreement. We get it. Healthy people do not have a clue, do they. ALyson over at Adventures in Lymeland spoke about how she can ride her horse one day and ride in a wheelchair the next and look normal and healthy in both circumstances. Joel just experienced much the same at his family hometown over Thanksgiving....although a family emergency kept him from resting as he should.
I am so glad you got to go~ Must have been a blessing to see everyone.
Sending hugs your way.

Baffled said...

It is so great that you managed to get out and see your family. What a wonderful thing to be able to be present in their company. Yes, they won't fully understand but at least you got to be there and that is the important thing.

Sue Jackson said...

Rocalisa -

It's OK - vent away!! That's what this community is here for :)

I completely understand what you are saying. My youngest son was only 4 when I first got sick, and those days of dropping him off at preschool then going home to collapse were really tough. Things do get easier as they get older!

Sorry to hear you are going through some tough times now. You are not alone!


upnorth said...

I think part of it is that we "rally" for our loved ones so that, especially if they don't live near us, they don't quite understand the reality of how sick we are...I get the feeling of seperation. I was at a social last night for the fist time in ages and ages and had to do all sorts ot make it happen. Anyways, one couple I know that was retiring was talking about all there upcoming adventures and making the most of all their more senior years and I felt jelous that I couldn't even enjoy a fraction of what they are planning and I'm 20 + years younger.
Vent away here anytime...it is so good to know we're not alone.

Toni said...

Sue -- If you're whiny, then I'm whiny because this described my experience this Thanksgiving and we were at my own house. That invisible wall. I know just what you mean. And last week two friends we haven't seen for years showed up for a surprise visit. They've both taken up qigong and another exercise program with weights and the like. They looked great. I could feel envy arise. There's no way I can do any of that. It took me a while to get the envy to calm down and to feel happy for them, and I've been practicing "non-envy" for several years!

It's just so hard - for all of us.

Elaine said...

I also "get" it! I sometimes feel like I'm there but not really present. I'm on the surface, but there is nothing deeper to be had. I miss that so very much!

You are NOT whining. You are stating things as they really are.

I appreciate your posts and your ability to be so honest.

Blessings to you all.

Annie said...

Not sick myself but still feel like I totally get it because of my daughter. My kid's life IS my life right now. All my friends are talking about how well their kids are doing and how excited they are about high school. Some days are better than others. You got the full whammy Sue...family with kids and old friends all in one weekend. It's no wonder you felt the distance. SOOOO glad that at least your body coped a little better than previously, however small comfort that is. The invisible wall is a great analogy. Rest assured your writing breaks down walls too. : )

Deb said...

You've articulated our daily reality. We understand! "Invisible wall"~good description. When at events like family gatherings (or any gathering...), there is a clear reminder of the slow drip of grief from our social losses. I wish NONE of us had to live with these illnesses! But, since we do, I'm so very thankful for all of you & for internet access to this community who "get it". Like Toni said, "It's just so hard - for all of us." Amen!

kellie said...

Sue, today is the first time I have read your blog, and I must say thank you. Thanks for letting me know that someone else gets it, well more than some ONE, some many!

I am quite fearful of Christmas day, as 1/2 hr of company puts me at my limit. I know I will put on the mask, but will feel guilty if I don't help with dishes, or serving. But how can I miss christmas.....

I hate want this illness takes away from my family,I hate watching my kids do my chores on top of all their schoolwork.My husband who can't cook for nuts, but trys every night. I so wish I had my life back, the hope I get it back keeps me going.

On another note, do you or any followers know of any information about getting CFS/ME AFTER a flu vaccine. We believe that is what triggered mine, and if we can get professional support I will be able to claim thru Workcare for my illness, as I had the injection at work. This will assist my family's financial position greatly. It's tough losing a full time wage.

Thank you again and I look forward to conversing further,
Kellie - Melbourne, Australia

Sue Jackson said...

Hi, Kellie -

Welcome!! And thanks for taking the time to leave a comment and introduce yourself. You are right - this online community is warm and supportive - we are glad to have you join us!

If you are on Facebook, there is a group there for parents who have ME/CFS. It's a secret group (i.e. doesn't show up in searches), so if you want to join, just send me an e-mail at jacksonde at comcast.net (I spelled out at to avoid spam).

As for the flu vaccine, yes, it is quite possible that was your trigger, but the vaccine itself isn't at fault. It was only doing what it is designed to do - stimulating your immune system. Unfortunately, you seem to be among the 10% of the population who has a genetic predisposition to develop ME/CFS, and the vaccine just happened to come along at the right (or wrong) time when your immune system was vulnerable. It could just as easily have been triggered by any number of viruses which are harmless to the general public but trigger CFS in those of us predisposed to it. I completely sympathize with the financial bit - it;s the same here, and I have been turned down for Social Security disability twice now, but I don't think you'll be able to make a case for the vaccine "causing" the ME/CFS. Sorry!

Welcome - hope to see you here often! Check out some of the links to other fabulous ME/CFS blogs along my sidebar.


Anonymous said...

I appreciate the post. We are all grieving these losses, the loss of normalcy and of shared common experiences, as you put it so well. When I'm with family and get that feeling that they don't really know me anymore, it is heartbreaking. I am gld to have identified the loss, to feel it and know that I loved that life so much. I just have to learn to love this one.

Pamela said...

As always, you are so articulate & accurately capture what I think all of us are feeling. So, NO! You don't seem whiny. I think all us PWC's feel this way and it's nice for me to hear that I'm not just being whiny, but that others feel similarly

hkd said...

I obviously need to go to bed - Sue, I just wrote a comment on the wrong blog post - doesn't really matter - but this Invisible Wall is the one I meant - thank you - its a wonderful post.

Sue Jackson said...

No problem! I will copy it here. I am so glad you found something here that helped you just when you needed it. We all feel that isolation at times. I hope today is a better day for you. Here's your comment:

I have had a really rough few days, which after a few good ones always makes it worse - and the only word that kept going through my head was ALONE - i just felt so alone - and its no one's fault or short comings - so as it got later and later this evening and i couldn't' sleep i decided to head to your blog - and i just picked a topic "friend" and found this post - thank you - i don't feel as alone any more - "

Anonymous said...

Thank you Sue for writing this incredible blog!
Not sharing the same experiences as my peers- university, dating, work, marriage, babies- has left me feeling isolated and even sicker.