Wednesday, March 10, 2010


I had not realized it was so long since I blogged--having the job is good, adjusting to loneliness has been difficult. When our transportation and other issues get settled down again, things will be easier--right now I haven't been able to make it to needed doctor's appointments. Thank goodness the kidney bleeding crisis ended right before my husband started the new job. It's difficult for me to engage without more help or mental stimulation--I have been reading and commenting on some blogs, though. I have little concentration that I want for various tasks, distracted by emotional and physical pains, the difficulties of being physically dependent but not having help. My counselor won't do phone appointments (I can't leave home for multiple reasons) but I did call a crisis line this week and that has helped me move forward, ever slight, barely perceptible.

I am not habituated to be an anchorite, but when times call for it, I tend to go within almost completely. Except for doctor's appointments--and the last of those on February 4--I had not been able to go places since my son's Christmas party and a twenty minute run into two stores. Most won't visit, even those who have time; it's always a tentative future event or unfulfilled promise if a day is set. Unintentionally, now most emails unanswered, phone calls unreturned. I intend to answer them. It's like I can't make myself move. I just need out--I have been able to get that on weekends some, finally, a few hours here and there. It's not personal if I've not responded; I will try and want to try. I long for connection and yet it's as hard to do as physical movement when the pain is greatest. The unengaged aloneness for this much time just feeds itself, depression I guess.

My children will be on spring break soon. We will have visitors and visit and more good in the coming weeks.

I need LIFE. While antidepressants are helpful for some, right now that would be like putting a band-aid on a spurting artery. The cause of the bleeding has got to be addressed, rectified, and right away. I am absolutely isolated during the work week, plus people are gone for evening activities, birthday parties, errands--weekends can be as difficult as the week. I want to work or do personal projects/hobbies, but I need help to be able to work, with retrieving or setting up or books or materials or getting me to an interview. A wheelchair. Dressing alone can take up all of a day's energy if I don't have help or must rush. I make sandwiches for the kids before school and have to lie down for three hours, still not recovered fully from the pain. If we don't plan carefully, I don't eat.

I knew things were getting bad last week when I couldn't even look forward to the wheelchair (bound up in red tape)--that's a bad place to be. But I feel hopeful realizing I'll have ten days with the kids, and probably transportation during that time too to take them somewhere, plus not so much pain that I can't get them out some. Spring weather ahead...


yanub said...

I have been wondering what you have been up to, what with being so quiet. I've been quiet too, but not for lack of activity. For too much. I have been exhausted and in pain from overwork. But spring break is a-comin', and that is good news for me, too. I so need the down time before we rev up for the end of the semester crush.

Is there some sort of transport service in your suburb to take you to doctors appointments or shopping? I know that here, "rural" transportation by mini-bus (you are never too old for the short bus!) is available for seniors and people with disabilities in the feeder towns. It isn't much, but it's something.

I have Skype now, so we are going to have to give that a try. I'll brush my hair so I won't be doing my usual Cousin It impersonation.

FridaWrites said...

There is--but it takes a few months to get an appointment with them, and you have to go downtown to do it. So that will be a backup for us, but we didn't realize until right beforehand that my husband's job would be so very far away (an hour away each way; I can't be in the car that long every day--4 hours plus my own driving around for appts). The minivan also had a brake problem, making things more complicated for transport of a wheelchair the few days that we did borrow an additional car! But he is getting a used car today or tomorrow--that will free us up for spring break. :)

Yes, we will have to try Skype very soon. I'll see about having hubby set things up. My hair is very curly and sometimes wiry, so you will never be alone.

Elizabeth McClung said...

I hear you sister. When you get sick you fall off the grid. And the sicker you get, the more off the grid you get. I have been guilty, due to being, well, ill pretty much all the time, of not emailing back as I want. your National Geo and Smithsonian have pictures I can look at and not go insane some days - you are very giving. Hours when even words are beyond me in the pain. Thank you. You still make an impact in my life, it is better because I know you, better every day in real ways.

Here are ways I have gotten people to visit me: Cat visits (animal visit, programs run by local animal shelters or disability organisations), volunteer visits (volunteers who read books to elderly can be convinced to come), a notice for volunteers at a local college - they get a line on the resume about 'helping the disabled' and you get someone to lift things you can't, and talk to, volunteer drivers: many communities have a volunteer driver association - try calling the local cancer clinic as they are the best tuned in, so people too sick can get to doctor appointments; library visits - some libraries offer a service for those who are elderly or at home to select books of interest and drop them off - it isn't much contact but it is something! Same goes with grocery stores (including the big chains I think) who will deliver for free once you have a blue badge or some other disability issue. Ministers: if you are christian and can stand a minister visit, most ministers of a church will make visits every two weeks or so to see people who cannot come to church, more often for those who want to take communion.

But yeah, sucks, sucks, sucks. Try whoever is organized, MS society, Cancer society and see if you can find someone on the phone who 'gets' your situation and is willing to advocate for you - I know me dumping a list of MORE things for you to do is like, "AHHHHHHH", but all my major improvements, even home care did NOT come from a doctor but from a nurse at the hospital's MS unit, or from the person who did the seating of my wheelchair - or from the Parapalegic society (that would be good for you, you definately have spinal damage, and if spinal cancer is counted I think yours should/would be as well).

FridaWrites said...

I am glad the magazines help--back copies of magazines are not something I usually would pass on, but I know how it is not to be able to do anything or read anything while sick.

The kids are on spring break, so I have company this week, but I think all of your ideas for getting some company are great ones. Our former chuch has people who specifically come visit the housebound. While most people prefer to help out just when there is a crisis, these people sign up on purpose to help those who are homebound for the long term.