I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
To send me a private message, please e-mail me: flylittlewordsfly@gmail.com
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Monday, 11 July 2011

Altered Relationships - keeping isolation at bay

I met my rehabilitation case worker from the insurance last week, and she echoed what all my doctors are telling me. Getting out of the house and keeping social connections is extremely important to my recovery.

Relationships are crucial to our lives because we are inherently social beings, and I have to alter my relationships so that they still work and work to support my health rather than deplete it. This is a tricky thing.

I see everything in life as an opportunity and a series of choices. I therefore see this illness, in relation to relationships, as a great opportunity to really live according to my own priorities. I have a limited amount of energy, so how I choose to spend it is crucial to my emotional well-being. Coffee with a friend trumps doing the dishes. But I can't go out for coffee every day. Every other day should suffice... :)

The self-help course I'm taking is focusing on relationships this week, and how we of limited energy and horrifically sensitive nervous systems find that they can be a source of tremendous support or tremendous stress, depending on various factors. Negative relationships are a real drain of energy, and aggravate all our symptoms. The leaders of the course suggest a few things to make sure our relationships are supportive. I want to share them, because I think they are really important and valuable, and make so much sense. Plus, they got me thinking... this is really good advice for everyone, not just the chronically ill!

1 - Triage - cull the relationships which are not necessary and are not rewarding, cultivate those which are. So hard at first, but gets really easy once you get used to it.

2 - Changing how socialization occurs - perfectly logical, but not so easy to do, changing one's habits. Good thing I'm adaptable :)

3 - Acknowledge, accept responsibility and show appreciation - I think you will agree I'm pretty good with this.

4 - Be assertive - not aggressive, but assertive. As in, understand your limits and live by them. Again, hard at first.

5 - Selectively educate others - Goes hand-in-hand with triage. Don't waste the energy on people who won't get it. But do help those who want to understand, and then they can help more.

6 - Build new sources of support - Done and still doing.

7 - Accept help (aaaaahhhhhhh! she shrieks in fear), and help others - It's a two way street. I'm getting better at this.

8 - Embrace solitude - (aaaahhhhh, she sighs in relief) find ways of enjoying life by yourself.

As I said, I think this is brilliant advice for anyone and everyone. Having studied sociology, Montessori, and being so into self-awareness and auto-evolution, I am intensely aware of relationships, and especially the role I play in them. It's amazing how by changing only myself, so many strained relationships became stronger. But not so amazing when you think about it. Actually makes perfect sense. Change one aspect of any system, and the whole system changes with it. It's called evolution. That, I think, was one real life changing moment, when I realized that relationships can, do, and should evolve.

The hardest of the above suggestions for me has been accepting help. All my report cards throughout my school years noted my self-sufficiency. I am fiercely independent, and can't say no to a challenge. So saying "help me please" is something I've had to work on. It's a personal evolution, and one I'm quite proud of. Plus, I do think the course leaders are absolutely right in that people do feel better about being with me when they know they are supporting me. I try to be specific about the support and help I need. I've been pushed through Ikea twice in a wheelchair. Why would I do that to myself? Well, I needed to see some things in person, others I can't buy online, and I get to spend time in a place I love with people I love. It's worth the extra rest to me. Plus I would only do it with people who can sense my energy levels almost as well as I can. When you spend enough time with observant people (which my close friends and immediate family are), they can start to sense the ebbs and flows of the energy and symptom levels.

The intereting part about this whole helping piece for me though, was the realization that I can still support others, in altered ways. I make jewellery for people. I fix things. I made my niece and mom's Purim costumes. I can look things up, proofread, and still share my very opinionated thoughts. I can share my knowledge and experience with colleagues, and other parents, and exchange ideas with all kinds of people. I can support the people in the forums and courses as well as they support me. I am helping people understand chronic illness, by writing about it, by talking about, and by living with it. I can make playdates for my son, and I can still make everyone and anyone laugh, talk my friends through problems, and pontificate til the cows come home (which some people, for some reason, seem to enjoy). I am also still an excellent sounding board.

What I've realized is that the people who understand me and my illness, and who want to be a part of my life have found ways to do that. Others have dropped away, and that's ok. It happened to me when I was depressed, and it's happened at other tough times in my life.  I gratefully acknowledge the pieces of life we shared, and gently say goodbye.

And since there are always opportunities, I have taken advantage of the fact that I am home to re-kindle some relationships I couldn't keep up with when I was working. I make a point of making a call or going out to quiet places or having friends over at least once a week. I see my parents constantly as they are my main caregivers, and their company is invaluable, but it's not the same as meeting a friend for coffee, and they know that.

Where I have really limited things is with my family. I cannot attend full family gatherings except for very short periods of time. I find it hard to be with all the adults and all the children all at once. Unfortunately, this means I rarely see some members of my extended family. I know they miss me, but that's the way it needs to be for now. So I see my nieces and nephews and my grandmother in bits and pieces, and am happy to at least be able to do that. They know I love them, and that's the most important thing.

Then, there is my new online life. I participate in two different forum groups where I have found new friends, and a great deal of support and knowledge. I am also in a skype support group, and I am doing this self-help course, and will continue with the follow-up courses. Facebook has become a crucial tool for me. It means I can keep up with people with very little effort. This blog allows me to express my bigger thoughts to a greater number of people who care about me deeply, those who are getting to know me, and to those of you who happened by and decided to stay a while.

We each define our own role in any relationship, and that is something that was very hard for me to learn. By taking responsibility for myself, my attitude and actions towards myself and others, I have built far stronger relationships than those I had in the past, as the course leaders say, by being assertive. There is a common tendency to cede and give in order to keep relationships, which is what I used to do, until I got sick of it and started to manipulate, whine, get angry, or do whatever it was that I needed to do to get what I wanted. In the past, I was one or the other. I have learned, and continue to practice a different way of being. I have found that by being strong in my own limitations (even before the illness) and needs, that people respect me more, and are more willing to be partners in stronger relationships. The better I understand myself, the more others understand me. The more I support myself, the more they are willing to support me. And the more I give of myself (whatever that looks like nowadays) the more they can give to me. But for all that to happen, first I need to understand, own and take responsibility for those limitations, be they related to my illness or not.

And so I thank you, for taking part in my life, in helping me keep isolation at bay, and in reading my thoughts.


  1. Nothing requires a rarer intellectual heroism than willingness to see one's equation written out.
    ~~~George Santayana~~~

  2. Interesting...
    I've just been invited to a reunion of my graduating class... well, sort of, considering I haven't graduated yet and they all have! It made me realise just how much I've grown apart from people who obviously don't really care about me and my wellbeing. It was very cathartic to actually accept that.
    (And, no, I'm not going to it!)

  3. Mima - Glad hear of your catharsis. It's not easy being 'left behind' :)

    Cuq - xo
    This one nearly made me cry.