Thursday, July 12, 2007

I'm Not As Well As I Look

We finally got our internet connection fixed! Now I can start working through all those e-mails from vacation.

It's been a very rough week. Once again (will I never learn??), I had commited to much more than I could handle.

For starters, I did too much yard work last weekend, in a desperate effort to make our entrance presentable for my neighbors who would be coming over this week for our book group discussion. Our yard is like a jungle right now, and almost all of our neighbors have professional landscapers. I just wanted to clear out the weeds along our front walk and maybe plant a few flowers. I spent several hours Saturday (with breaks!) weeding, trying to do most of it while sitting. I woke up Sunday morning and couldn't bend over without excruciating pain. I guess it's a muscle spasm in my back. I spent all day on the heating pad and am still in a fair amount of pain several days later.

Monday, I was scheduled to teach a training course in the morning, as part of some consulting work. I hadn't done any teaching since getting CFIDS, but I thought I could handle a half-day. The combination of the back pain and being on my feet for several hours left me severely crashed by Monday evening. Thank goodness my client asked to postpone Tuesday's work.

I was supposed to host my book group on Wednesday evening (see what I mean about committing to too much?). By Wednesday, I was still badly crashed with aches, sore throat, the works. I had to cancel at the last-minute. I was both embarrassed and relieved when I finally sent the e-mail to my neighbors to cancel. A couple of them responded very compassionately, assuring me not to worry and offering to host instead. The rest were just silent.

I feel as though I've come out of the closet, like my condition has been revealed. I think they all knew I have a chronic illness, but I doubt any of them know how debilitated I am. Who could possibly understand CFIDS without living with it? In my e-mail, I admitted that I shouldn't have offered to host in the first place, that it was more than I could typically handle. I knew that when I volunteered, but I wanted to do my part. Besides, I was embarrassed to be a part of the group without taking my turn like everyone else.

How can you possibly convey to people how debilitating "normal", everyday activities are for someone with CFIDS? I feel as if we live in our own little world here in our house. None of our neighbors could possibly imagine what it's like here. I worry that people look at our weed-filled yard and messy house and just think we're lazy. But you can't go around telling everyone how sick you are. It would make them and me feel uncomfortable, and I really don't want to be pitied, just understood. Sometimes I wish I could wear a sign around my neck that would explain exactly what CFIDs is and what my life is like, something that would provide instant understanding. Or maybe just something like, "I'm not as well as I look."

Ah, well. Life goes on, right? Maybe this week's events, while embarrassing and disappointing, will help my neighbors to understand just a little better. I'm feeling a little better today, continuing my slow recovery out of this latest crash.


Cusp said...

Don't look at it as an embarassment --- look at it as a breakthrough.

It might have been kind of forced on you but everything's out in the open now and you don't have to make excuses anymore or hide. You don't have to give away all the gory details of Life With ME/CFDIS but at least people now know you aren't lazy or untidy or uncaring.

The people who understand will support you in ways they can. The ones who leave you alone aren't worth worrying about.

Good on you for making the phone calls and breaking the news.

Sherry said...

I so very much know how you feel. Sometimes, in an effort to help people understand, I feel like I've only accomplished making them feel sorry for me for a few minutes, and that wasn't my intention at all. I read somewhere that people can only really understand something if they've experienced it. With this chronic fatigue I'm pretty sure that is the case. Even a spouse who lives with you and sees you every day has a hard time understanding. Take care.

Anonymous said...

I have the same feeling that you have.. and I guess anyone with CFS could relate. The problem is Im starting to loose faith... and suicide seems like an option nowadays. I dont want to live like this... I meen it is hardly a life at all. I feel like I just stay alive so other people wont be sad. I dont meen to be depressed Sue its just how I been feeling for a while now.

Sue Jackson said...

Dear friend -

I'm sorry to hear that you're feeling in such despair right now. I know how you're feeling. During the first two years of my CFS, I went through some periods of serious depression. I called the Employee Assistance Program at my husband's company and told them I wanted a therapist who understood CFS. I was very fortunate that they found a wonderful psychologist who specializes in chronic illness and whose own grown son has CFIDS. She helped me tremendously.

I'm sure you would benefit from this same sort of help. You could start with your own doctor and ask for a referral to a therapist who deals with chronic illness. Be honest with your doctor and tell him/her how you've been feeling lately, including the thoughts of suicide.

If you have a friend or family member who understands how ill you are, enlist his or her help as well. When you're so ill and so depressed, it can be difficult to help yourself, as I know myself. As you mention in your note, there are people who care about you.

If you feel as if you have no one to talk to, you could also try a suicide helpline. Your phone book will list a local number or you can try the national hotline at 1-800-999-9999. You can also try this webpage:

Just about everyone with CFS has, at one time or another, felt like you are feeling, like there's no hope. Please don't give up. There are many people like me who understand how you're feeling. Better times are ahead. Please keep in touch and let me know how you are doing. You can e-mail me by clicking on "My Profile" and using the e-mail link.

My thoughts and prayers are with you -


Anonymous said...

Thankyou for your advice. Maybe I should look into that.. the thing is Im not bedridden but my brain is not what it once was. Not even close.. I feel like a prisoner in my body.

And I cant understand how anything nomatter how much support or theraphy can change that. I can accept my tired muscles or unwell stomach and beeing constantly fatigue.. but not that my brain is so different from what it once was.

The only hope I have is that they will find something for my brain.. but It seems like it wont happen.

Sue Jackson said...

Don't give up! Talking to someone really does help, even though it might not seem that way to you now.

And there is so much exciting research going on now, with new treatment possibilities opening up. You might want to talk to your doctor about virus testing and anti-viral treatments, like what I've been discussing in my blog. Most people with CFS on Valcyte, Valtrex, or other anti-virals report that the first improvement they notice is in brain fog and cognitive functioning. I plan to post more information about anti-virals tomorrow, so check back. There are lots of reasons for all of us to be hopeful right now with such exciting breakthroughs!


eileen said...

I am sick with cfs/fibro 21 years. I have deep spiritual life. I have no family or true friends left. lately the thoughts of suicide are making more sense.i was a nurse practioner. I am ging to seea therapist this week, but I am not depressed. this is not living. after a good day yesterday I could not evenmove from the bed today till 6'30 pm. and all I did was sit all day. I am tired of dealing with my own colloeagues who disbelieve me,idon't want to live on drugs. as a society we have a long way to go to accepting people with serious chronic illness and ours is so misunderstood still. living in a sick body is hard enough,living alone ,needing to love n be loved leaves me feeling as if I have no right to bring someone into my living nightmare. it ruined my marriage. sorry to be a downer. you are the only people who understand. much gratitude eileen