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Posts Tagged ‘relationships’

Migraines, Travel, Social Life

April 13th, 2009

We had a nice four day trip over the weekend to visit friends in Boston. A wonderful family who lived in our town for two and a half years.  They were our around the corner neighbors, and our fourteen year-old sons are best friends.  They are warm and easy to be with.  It’s a six hour drive each way.  We were actually in Boston from about 7 pm Thursday until 1 pm Sunday.

It’s ridiculous how hard it is to plan for and face a simple weekend trip like that.  I needed medication refills and discovered various mistakes that had been made in the prescription that involved multiple phone calls and trips to the pharmacy.  I recently increased my Topamax dosage and I am experiencing once again the mental cloudiness I have had at each new dosage level – making it hard for me to stay focused on a task or remember what I need to do next in a sequence of tasks.  This is beginning to lift, but it’s not gone yet.

Of course I had to pack all my meds, for preventing Migraine, in case of migraine attack, all my supplements, my thyroid meds.  My husband and son had meds to pack.  My eighteen year-old daughter was staying behind to work and dog-sit, but we had to be sure she had food and instructions. My husband and I are both at rather crucial points in business and there were things that had to be finished before we could hit the road.  Our accountant called just before we were leaving with additional details needed for our taxes.

I get pretty stressed with highway driving, especially on high travel weekends like this one, especially in the high-speed, high-pressure, road-rage rampant, “I’m more important than you are and I own the road” Northeast (where I live). That kind of stress goes right into my neck muscles and can lead to headaches and Migraines.  We passed a couple of horrendous accidents on the way there.

I left without the spare pillows I usually bring – due to several injuries I sleep propped up so that I don’t ache so much I can’t sleep. I found myself a bit embarassed by my inability to find words and complete sentences in the morning and evening when my meds were strongest. And Saturday afternoon I passed on a trip to the Aquarium with the families, and lay down with a Zomig, a book, and eventually a nap, to get rid of a Migraine.

AND – you’ve listened to my litany of complaints, here’s my conclusion: I had a great time.  It was so nice to get away.  It was so lovely to spend time with friends.  It was worth the stress of driving.  So what if I had a Migraine – chances were way better than even I would have had one at home anyway, without the visit.  So what if I stumbled over words a little – entertaining though I may be, my conversation is not the only point of the visit (shocker, I know!).  We came back renewed and refreshed. Tired after our travel, yes, but it was so very worth it.

We don’t get out much. It’s hard to make plans when Migraine and other illness often comes along and changes them. Money has been tight. My house is not as clean and neat as I’d like it to be, so I don’t ask people over much. But it’s so important to be with people. Every little bit helps. True friends don’t love us for how perfect our housekeeping is or our speech is or any of that.

– Megan

Open door image courtesy of emdot/marya.

Tags: friendship, migraine, relationships
Posted in Managing, Travel | Comments (2)

A Woman’s work is Never Done – So Stop Doing It – Take Care of You

January 26th, 2009

We talked recently about telling the truth about our disease. When we do that, we need to come face to face with others’ expectations of us, and whether we’re going to try to meet them or not. In the face of our diseases, one of the things we must deal with is that we cannot be all things to all people. We must balance caring for others, appropriately, with caring for ourselves. Finding balance is never about reaching perfection and staying there, it’s always a process of adjustment and change.

This is a women’s issue because most of us women expect ourselves to keep a certain standard of order around us, despite years of feminism. We see ourselves as having to care for everyone. Research shows our brains are organized to multi-task and manage our immediate surroundings, much more than men’s.  I have always lived at war with myself with my perfectionism coupled with an ability to be pretty organized but only if things go a particular way – I have trouble being flexible and still staying orderly. In the brief periods in my life when I lived alone I was pretty organized.

Living with 3 people with ADHD, while being chronically ill myself, has challenged my organizational abilities way beyond their limits and most of the time I am overwhelmed and just give up, but then the perfectionism pops in and I struggle up again and try to organize everything. And so it goes. Living with Migraine disease and the other chronic ills I struggle with has taught me something about when to give it up and say it’s not that important. I have also had to accept that my dear wonderful husband will work his tail off to feed us and run the errands and make sure the homework is done and the kids are well and happy and in bed, and he’ll try to keep up with the dishes and keep the mess down, but if I’m out of the action chances are I will get up to a mess because he can’t keep up with it on his own. I care how my home looks, and my pride has had to take some pretty hard hits, many times. Because no matter how bad I feel about the mess, my health is more important than how my home looks.

Lots of chronically ill women I know rely on their loved ones to shoulder a hefty share of work around the house, but lots more try to get it all done themselves, and run themselves into the ground. Letting go is an art. We need to let our loved ones know what we need, we need to communicate about what needs to be done and how best to split the work, and we need to accept that it won’t all get done. We will all, every one of us, die with things on our to-do lists. If we’re perfectionists, and we need to rely on others, we need to accept that things won’t be done to our standards. And live with it.

Chronically ill folk often report that their extended family members don’t understand – they don’t want to visit because our homes aren’t the way they expect. They come to visit and we are doing our best to make them comfortable, but there’s this sense that it’s all on top of something wrong – like icing on a mud-pie. Chances are they have no idea about what we struggle with on a daily basis, what it takes to be chronically ill and just manage the basics of life. Chances are we try to put on our game face and look like everything is okay, because really, who wants to complain all the time, or talk about all this negative stuff?

There’s no substitute for communication. We need to tell people that we’d love to have them visit (if that’s the case) but that they must take us as they find us, and we must lay down some ground rules. They need to understand we are ill, and we are doing the best we can. If coming to visit means pitching in, we need to let them know that. If they can’t accept that, maybe they shouldn’t be visiting.

We can’t expect to change people. Most people respond well to open, honest, uncritical communication. Some people don’t. Some people are toxic to us. A friend recently shared about cleaning her house for the visit of a very exacting and critical relative – one who would apparently not be satisfied no matter what. A key ground rule might be to establish your home as a no criticism zone. A really key part is knowing that you don’t owe anything to toxic people. You need an atmosphere that supports your health and probably the biggest piece of that is having the people in your life support your health. If you had a pet you were terribly allergic to you would be very sad and you would not blame the pet but I hope you would find another home for that pet! Toxic people are like that – you don’t even have to blame them. You just have to stay away from them – to stay alive!

Don’t let yourself be defined by those who criticize you, and don’t let being a woman mean you can’t sit down and rest. You need to take care of you, because without you, nothing else matters.

– Megan

Snake handler image courtesy of Robbie Jim.

Tags: chronic illness, Communicating, relationships, self care
Posted in Communicating, Managing | Comments (1)