Being Busy

I have not blogged for a couple of days because I have been busy. It was wonderful to be busy.

I have spent so much time by myself over the last six weeks. I have kept myself busy and on some levels, very productive. The only people I have seen with any frequency, other than my husband, are the physical therapists when I go to PT twice a week. I have been starved for the sight of other people. I needed face to face interactions.

Normally I spend a lot of time on my own which I don't mind. But over the course of a week, I would go to the gym three times, go to the grocery store, the library, my parents house, and see a friend or two. But I had six weeks of nothing. A friend drove me to the doctor, my sister and my cousin took me to PT once. I took a cab to PT. I could only go to the grocery or library when my husband was off work.

But this past weekend I had two craft shows. They were really busy. I probably did too much walking and standing on my knee (never mind my back and all the rest of my body which hates me today). But I talked to dozens of people each day. I interacted with the public. And it was wonderful.

I know I will be paying the price for the rest of the week and need lots of rest (and ice packs and heating pads). However my mood is greatly improved. I needed interactions with the outside

Living the life of an isolated unhealthy person, if it is compounded by a period of enforced isolation, can be very stressful. All of a sudden you are encircled by a wall of limitations and restrictions.

So this week I will spend a fair amount of time recovering from two days in the outside world. But I will take myself places - PT, lunch with a friend, the grocery store, library - all on my schedule. I am back into my world where I can pace myself as I want.

Trapped At Home

I haven't been so trapped at home since chemo. Then I was too sick to care that I spent my life inside watching TV, hanging out with the cat. Right now I have a giant brace on my leg and can't drive until next week.

My husband is home today, but its day five of 'togetherness' and its starting to get old. Its great that he's doing the laundry I sorted, saving me trips up and down our one flight of stairs. But we are running out of things to do together. He does have other projects he is working on.

Tomorrow a friend is rescuing me and taking me for coffee and then dropping me off at the hospital so I can go to my father's doctor appointments with him. The difference is I will be the one in the wheelchair, giving him a hard time about driving skills, instead of the otherway around.  But I will be out of the house for a good four or five hours.

Thursday another friend is rescuing me and taking me to my knitting group. That will keep me out for several hours again. And I get to see people and talk to them in person.

In the meantime, I am trapped at home with the cats - and the (damn) half dead chipmunks they keep bringing home. Because of my knee and lovely brace, I can't do much of anything. Standing is difficult for any length of time. Sitting is okay. Lying down with my knee up is best. This is very limiting.

I have the DVR and all the 'bad' tv I have recorded. I have tons of knitting I can do. I have to finish a weaving project and set up my loom again (if I can).

But I am not in a lot of pain. The cranky whiny stage has not yet appeared but could be looming in the background. Maybe its time to finish painting the kitchen... Or maybe not.

Loneliness and Isolation

I find our new house provides lots of loneliness and isolation. I knew it when we moved out here and I stopped working that my life would be very different. But I don't think I realized how different until now.

Last winter and spring I was busy getting settled into our new house - and painting about half the rooms in the house. Then I was busy gardening and being outside. Then it was craft show season. Now not so much. I'm not going to finish painting the house until after the holidays but that only takes up so much of my time.

Our neighborhood is full of people who work. The woman on one side is home with two small children to keep her busy. The woman on the other side is retired and never seems to be home. I have taken time to get to know her but I don't think we have that much in common.

Most of my friends work full time or nearly full time so they aren't available during the week, or they are not very local and a good drive away.

My Christmas presents are all purchased. I have to put a few more in tissue in gift bags. I am waiting for a couple last things. I have one idea of one thing to make and that's it.

I love my husband but he isn't here all day long. He works full time and then comes home and does his own thing. This is important because he needs time to relax. When he's not here, he's busy, even if I am not. So I can't expect him to focus on me the second he walks in the door until we go to bed at night. I can't count on him to fill my time when he is home. But the real problem is when he is at work anyway.

Yesterday I was at the gym and then came home and was then home for the day. The cats are not much for conversation. So its just me and and bad TV all day long.

That is not a good combination. I need more to fill my time and interact with other people - other than the gym and doctor appointments. Basically I need a life. A new life.

So that is my focus. My first experience with this kind of isolation was during breast cancer treatment. I was home and I bored. My husband was at work and it went on for months. I was lonely and isolated. Any other time I was home for extended periods of time I was healing from something and got better. Now its just me.

I have options I can turn into Suzy Homemaker but that's really not me. I hate housecleaning. I have been cooking more (but that's not good for my waistline). I could get healthy - but we know that's not going to happen. 

My health is the huge limitation in my life. Physically I can't do much more than I do now. That is my problem. 

The problem is I know what my problem is but haven't quite figured out how to fix it. This week my calendar is pretty empty except medical appointments and the gym. Next week we will have house guests for several days. The week after - I need a plan. I need friends to get together with. I need projects to do. I need to figure out how to get out of the house and do things (within my limitations).

Addendum to stigmas

As Lesley commented yesterday, the same can be true about chronic problems. People just don't understand. Then they forget you still have a problem or ask why it isn't better. Chronic problems do not go away.

A good example of this is that I have lymphedema in my left arm. I used to go for acupuncture. When I started I had to fill out a big long form with all my health issues on it. We talked about all my ailments and including lymphedema and how there could be no needles on that arm.

The acupuncturist would 'forget' sometimes and go to put a needle in my left arm. The last straw for me was when she said to me 'this hasn't resolved itself yet?'.  Clearly despite her statements that she had learned about lymphedema, she had no clue.

Then I have friends who ask if I want to go on a big hiking trip as in the past - no can do. That part of my life is over. And not by choice. If I can't go hiking it doesn't mean I don't enjoy your company.

I think some people feel that their friend's chronic problems will just go away if they could just wish them away. But life isn't like that. Which is why the diagnosis and treatment was so traumatic.

I mentioned my current knee problems. Well this is a third year of problems with what is formerly known as my 'good' knee. Now I don't have a 'good' knee. I have two knees which I hope won't need replacements for a couple of decades.

If someone has a chronic ailment and can't get around and out and about as  much, they are still there. Don't ignore them. If you can't get together, pick up the damn phone and call them.

The other half of having cancer

I have touched upon this before but the other half of having cancer, or any ailment, is the impact on the patient's partner or spouse. Somehow that gets skipped. The spouse sometimes becomes the silent partner without support in a cancer journey.

I know dozens of people with cancer and other ailments - either in person or online - and each handle it differently.

Since we got married eight years ago, I have had five surgeries, numerous procedures, and other medical adventures and been diagnosed with breast cancer, rheumatoid arthritis, and fibromyalgia as well as degenerating disks, gall stones, and I can't remember everything else.

My husband comes with me on all important doctor appointments - he is allowed to see everything but a pelvic exam and the scale when it shows my weight. (The first has never been an issue and the second he is always told to turn away or close his eyes and the nurses write it down without saying a thing.)

I wanted him at the 'bad' appointments because I wanted support from him and also felt that he should be involved as they were going to have a lot of impact on our lives so he should be able to hear whats going on and ask his own questions.

Even now that my doctor appointments are not dealing with cancer treatment, I still call him immediately after every one to share any news about my health.

When he had his own cancer issues a few years ago, I went with him on all his appointments to hear what the doctor has to say and make sure his questions got answered. I needed to be involved so I could support him as best I could.

But then I have friends who go to all their cancer appointments by themselves and chose not to involve any family members in their treatment. I have friends who drove themselves to all their chemo infusions. I always needed a nap after mine and wasn't sure I could drive myself home.

I know there is a line between sucking up all their time and no one wants to go to as many doctor appointments as I have (a minimum of 50/year - really) but sometimes I think you need the support.

Studies have shown that husbands feel isolated when their wives have breast cancer - they don't get the support they need. A cancer diagnosis is not a one person adventure, it involves the patients family as well.

Doctors are happy to include spouses in medical discussions. I think a spouse who is involved will feel less isolation as they become part of the cancer journey as opposed to a bystander.

Belonging vs. loneliness

The opposite of loneliness is something along the lines of belonging. We want to belong. Humans are social animals and have a need to belong to a group in a sense. The majority of us want to be social and interact with others.

We create our lives with our friends and family around us in a cushy little nest. Then a cancer diagnosis takes us and yanks us out of our comfort zone and throws us into the world of biopsies, tests, procedures, medical misadventures, things that will make you feel a little 'pinch', oncologists, radiologists, chemotherapy side effects, radiation blistering, and all sorts of fun and games we don't understand and our friends and family can't even begin to. We no longer belong. We are cast off into the stress filled world of cancer.


Cancer and other icky medical diagnoses can be very isolating. We feel like crap. We are overwhelmed with medical stuff. No one understands. We are lost adrift in our little worlds with out support.

We then seek to belong again. That is where we find support groups, online message boards, little groups on Facebook, and learn to belong again with people who understand all these yucky things that make up a cancer diagnosis. We need to find a new nest to support us and our medical ups and downs. We learn from each other and regain ourselves. We may be different but we are still here - and mentally sane (or mostly). (The sanity part can be questionable but we do try.)