May 12th: ME/CFIDS and Fibromyalgia Awareness Day

I had a post in my head for today. Its May 12th. ME/CFIDS and Fibromyalgia Awareness Day. Its also been nine years since I first discovered I have Fibromyalgia and Myalgic Encephalomyelitis or, as its known here in the US Chronic Fatigue Immune Dysfunction Syndrome. I’ve been lucky the last few years, my CFIDS is in a partial remission. I can work part time. I can take care of myself, my dog and my home on most days. I can even hang out with friends and or go visit family on occasion.

I’m still sick though, nine years later, and today is one of those days where, even in remission, the illness dictates what I can or cannot do. I just can’t find the energy to get my thoughts in order today. Much less take my dog for a walk, or shower,  or play in my garden even for a few minutes. So I’m going to leave you with a couple links that might help you understand, if you’re curious, what life is like with CFIDS and Fibromyalgia.

The first is The Spoon Theory a great way of explaining life with chronic illness. The second is an essay On Pain. Both are feeling rather appropriate as pain is winning today and I’ve been recklessly using up my spoons for the last several weeks as I’ve enjoyed letting someone new into my life. Who knew dating took such energy?! Its been well worth the trade (and I’d make the same choice again in a heartbeat), but I suspect its time I start paying attention to my body again and try to find that balance between ill and well that I’d once found.

So much for healthy coping skills

*sigh*

Perhaps there are some doors I’m not ready to open yet.

Closets, Boxes and Push Mowers

I’ve been opening metaphorical doors lately. Timidly peeking inside a few of those hiding places inside my soul where I (over the course of my life) stashed all those things I couldn’t bear. Its how I learned to cope with things, from a very young age. Anytime something scared me, made me feel awful, or lonely, or awkward, or embarrassed, or sad, or miserable, or angry or hurt – I’d shove it in a mental box. Then hide the box in a closet, or bury it deep in some hidden corner of myself.

I’ve decided, however, that I don’t like this particular coping skill. It might have served me well when I was a child and didn’t know any better. Now, it feels more like hiding from myself than actually coping. I’m tired of hiding. I’m tired of fear. I’m tired of secrets. I’m tired of not feeling – and there are so many wonderful things out there to feel!

So I’m (somewhat cautiously I admit) opening metaphorical closet doors and digging up the occasional box. Just to see what’s in there. Just to see which is worse: the anxiety over what might be in the box or what’s actually in there. Its not been too bad so far. Many of the boxes simply make me want to, for example, give 14 year old me a hug and tell her it’ll be ok. Some of them even make me laugh, when I realize I’ve been hiding from such a silly thing for so long.

Sometimes though, I find one, like this week’s – a box that contains a lot of the failed relationship/marriage stuff. There’s so much anger in there! I’m not even sure who most of its for – him or me? Both probably. I don’t really know how to cope with all that anger. It still scares me so much to be around it or feel it myself. The other emotions I do alright with, but anger – that’s the one I almost always go straight to repressing, often without even realizing I’m doing it.

One trick I’m learning is using what I’ve got in my life as a means to let it out. Swimming is good, its meditative and leaves lots of time for thinking while the body moves through the water. That only works if I have an idea what’s wrong though and am at the point where I want to think it through. The peace that follows after getting out of the pool goes nicely with having worked through it as well.

Other times, I’ve gone and repressed the anger so quickly that I don’t really know what’s wrong. All I know is that I feel… off. This is when its time for grass mowing!

You see, I have this old reel mower. Its bright orange, circa 1970-something. It cuts grass reasonably well if you put the effort into it. But its old and cranky. It has trouble with ground that isn’t perfectly level, and grass or weeds of different thicknesses throw it off so that it jams or skids right over without moving the blades. I call it my acoustic mower. It also turns out to be the perfect tool for getting unstuck when dealing with (or rather avoiding dealing with) anger. The trick seems to be to do it purposefully and with a certain amount of awareness. This allows the mower and grass to become a nice safe trigger for the release of the anger, while providing me with a mindless task to perform while working through it.

I’m sure my neighbors think I’m crazy. I don’t care though. I opened a box I’d been avoiding. Faced the contents. Dealt with it in a way that not only left me feeling better, but also got my stupid grass mowed.

I find myself thinking of old hurts (and maybe understanding a bit more).

Specifically I find myself thinking about the challenges of CFIDS and my marriage. I can’t imagine what it was like, watching someone you care about so very ill for so many years.

I know what it was like from my perspective. The superficial parts of what I wanted or needed seemed to change so rapidly and drastically from one moment to another. Sometimes I wanted to be distracted, so that I could pretend I’d be able to forget for a while. Sometimes I needed to be allowed to be angry or miserable or sad, so I could let it out without thinking about reasons or solutions. Other times I needed to read and research and study, trying to figure out those reasons or causes and look for solutions. Often, I just wanted to live what life I had. With CFIDS. In spite of CFIDS.

Sometimes I wanted my ex to try to understand what it was like. Sometimes I got exasperated when he did try – how could someone who hasn’t experienced this hell possibly understand what it was like? Often I needed his help for simple tasks. Even more often I didn’t want that help even when I knew I needed it. Sometimes I need him to let me test my limits, even if we both knew I’d pay dearly for it. Sometimes, I needed an arm to help my balance or a hand to comfort. I needed him to want to make plans that included me, and yet know that those plans would most likely fall through (and not get mad at me when they did).

Always though, I remember longing so deeply to feel even just a tiny bit less alone. At the time, I didn’t know how to give voice to what I meant by that. Looking back now, I know. I didn’t need my ex to suddenly understanding what I was going through, or find some magic new way to help, nor protect me from the hurt of it – I simply needed him to be present with me while I went through what I had to go through. Nothing more than that. and not as easy to do as it might sound.

Today I’m full of questions.

How does one help a parent with ocd-hoarding?

More specifically, how does one help a parent who has not been diagnosed with ocd-hoarding, who will not seek help, and who does not believe there’s a problem beyond a slightly cluttered house and adult children who aren’t around to help out as much as they perhaps ought?

How do you deal with the heart that breaks every time you think of your parent living in such a situation? Or the physical health issues that flare up any time you walk into that house?  Or the mental ones, like the panic attack that comes before each visit. How do you cope with the fact that as much as you love your parent, you would rather do just about anything than go home?

I suspect you can’t force a person to get help, when they don’t want it, don’t feel there’s anything to get help for. It is the person’s life after all, to live or destroy as he or she sees fit. But how do you reconcile that with family responsibility? Do you try to walk away from the problem? Do you allow the parent to live as they wish, while they still can and wait for the problem to reach its inevitable crisis point? Do you try to force the parent to get help anyway – risking worsening the problem (a frightening concept at this stage) and destroying what good relationship you have left with your parent?

Even on a grey, foggy day

Between CFIDS, Fibro and a failing relationship/marriage there’s so much that I lost over the years. Hopes, dreams, jobs, family, friends, friends who felt like family, co-workers, the illusion of financial security, my home, favorite activities and sports, actual intelligence and cognitive abilities, stamina, strength, flexibility, the body I knew, my very face looking back at me in the mirror was almost unrecognizable to me. Some of these things were taken from me or lost to me. Some of them I let go of or walked away from out of fear, or the near impossibility of keeping up with friends and the more active parts of life when so very sick.

The grief of those losses, all piled up on the heels of each other, used to be overwhelming. The beautiful (and disturbing) thing about time though, is that you forget – not the thing itself, but some of how it felt. These days, the wound only hurts if I purposefully re-open it or if it accidentally gets opened for me (little glimpses that send shivers of fear down my spine at the thought of going back to that existence).  The knowledge of how fleeting all of those things we take for granted are, has become simply a part of the fabric of my being.

Instead I see, most every day, new things.  There’s such a world full of wonders out there, right out my front door. I’ve experienced such a tiny fragment of them. Along with those new things are bits of myself returning to me, like long lost friends. One thing I missed most, without really knowing it was gone – my smile. I noticed it missing when I started working at the library. Greeting patrons, the closest I could often come was somewhat more akin to a grimace. Or as I practiced and was able to shape it a bit more like an actual smile, it was still so superficial that even I didn’t buy it. Lately though, its back and oh suddenly I realize how much I’ve missed it! That genuine sort of smile that practically dances right out of your eyes and feels like sunshine inside. Welcome back old friend.

Its an odd thing this divorce process

Yesterday would have been our 17th anniversary. 15 years together, 12 of them after we bought our dream home, 4 of them married. Essentially, we grew up together, the ex and I. The sort of growing up you do after college, figuring out who you are and finding your place in the world, building dreams – ah, such beautiful dreams.

Its an odd thing this divorce process. Not the legal aspect, as much press as that gets – its fairly cut and dry. I mean the process of separating yourself from this person who was such a huge part of your world, going through the stages of grief almost as if one of you had died, learning to identify yourself as an individual again, and most likely trying to figure out who that individual is – what you like about them and what you don’t. Then deciding what to do about it.

Its an amazing period of growth. Or it can be, if you’re willing to take a serious look at why you ended up how you did. Not his part, or her part – your part. What did you do to bring yourself to this point, and what do you think of those actions or in-actions now? I’m not advocating divorce or anything, believe me its something I never wanted to experience (so much so that I vowed as a small child never to marry in the first place, specifically to avoid this particular experience). Its just that, as hard as I tried to avoid this experience, its a rather incredible one.

This journey has been challenging as hell. Some days I’d have rather not gotten out of bed, or preferred to lose myself in a bottle of wine. Other days (most days now) have brought such joy at this rediscovering of self. I still get surprised now and then, little moments mourning a long friendship lost – like watching movie previews in a dark theater and turning to whisper your thoughts, only to find that person no longer sitting next to you.

Last year at this time I would have been rather melancholy. I was rather melancholy. This year though, I’m eager to see what other aspects of my old self resurface or what new parts there are to this self I thought I knew. So I started off this new year by doing something my old self would not have done. I wrote a long overdue letter, facing my demons – acknowledging and accepting responsibility for the hurt I’d caused (without, as my old self would have done, hiding it in excuses and blame, though there was plenty to go around that wasn’t the point). Spring is here after all, the world around me is coming back to life, filling itself with color and birdsong. Much to my surprise, I feel myself moving into a new phase of my life – one I want to enter with a clear conscience.

I still don’t know where I’m going. I’m still learning who I am and what I want. I’m still just doing whatever comes next. But I’m looking forward to the journey, rather than just getting through it. Its a nice change.

Thinking about change

I’m at home, sick, for the 5th day in a row, for the second time in as many months. I think I might have just crossed the line onto the recovery side of this one, though I’m still exhausted. I’m oh-so-weary of resting. If I watch one more online TV show, or read another page in my current mindless book, I’m afraid my brain will give me up for dead and ooze out my ear in search of more fertile  pasture. So instead I’m going to make myself sit up at my computer and do the writing my brain wants me to do.

I’ve been reading, recently, some of Sharon Astyk’s blog Casaubon’s Book and today’s post titled “Adapting In Place – And When Not To” got me thinking. Actually that’s a fairly common occurrence with the posts on Casaubon’s Book – making me think. Its one of the reasons I keep going back for more. This particular post hits on something that’s been nagging at me though.

When I bought this house, in this old mill village on the river, surrounded by working farms, I did so with a fair amount of forethought. Some of my reasons were personal. I wanted to be near water because that need for water (lakes and rivers, more than sea) is something that’s part of me, something I strongly felt the loss of those years in the NC Sandhills, surrounded by a beautiful yet dry sea of whispering pines. I wanted to be near working farms because there are things I want to learn from them, things I want to ty my hand at that don’t seem conducive to life downtown wedged in a nook of forest between one highway and one interstate. I chose a hundred year old (or more) village with close-knit neighborhoods, both because I’ve been growing interested in history and because, while I wanted out of the crushing crowds of larger towns, I like living in an active community. I also know if I isolate myself on some farm in the country or cabin in the woods, my introverted side will happily try to turn me into a hermit. Tempting sometimes, but no thanks.

Some of my reasons were practical. After years in my forested house, I wanted a place I could garden. A small house, with decent solar positioning, and a yard that had room for the garden and the dog. A solidly built, older house that made the best use of its  features, cutting my heating and cooling needs.

Others of my reasons: I can imagine a day when having access to a large body of water, working farms within walking distance, a home that is bearable to live in with little to no reliance on electricity, natural gas, or other public services  may be useful things to have. I’ve felt a substantial change coming for so many years now. Its an interesting thing trying to prepare for a change when you don’t know what it might look like, when it may come, or even where that unbearable sense of urgency, six to eight years ago, originated. Was it only to do with my own need for personal change? Was it something else? I still don’t know for sure, though while the urgency’s lessened, the feeling is still there. I don’t think I’d put myself in the doomer category, after all while I do feel that change coming and worry over how it will take shape, I’ve too much hope for what it might bring with it. Change brings hardship with it, but also growth and strength and new found joys.

The part of the Adapting In Place – And When Not To post that nags at me are the other things I was looking for when I bought this house. The things that couldn’t be managed whether due to constraints of money, job, competing interests, lack of thought in that area, or general unwillingness on my part. A major one was the desire to be closer to my brother’s family. To be more a part of their lives. They’re in a place that’s good for them – and I’m glad of that. Its me who couldn’t bear to move to the city, just to be close. Me who wasn’t quite ready to take the risk of an entirely new place by giving up my job and heading for the foothills that feel so much like home and bring me within a four hour drive of family.

Then there’s the family an hour to the south. Family who will over the next twenty years need care and assistance, though neither are, I imagine (and can entirely understand), ready to think about such things (I’m rather surprised I’m thinking of such things) . Will I be able to give the help that is needed from this distance? Or my brother from his even greater distance? Would my family be willing to move when the time comes? Would I? Or what if I headed for those foothills as I’d intended. Home – the same mountains, same lakes, same flora and fauna, just further south and closer to my brother and his family. Would my mother and my aunt follow? They might. More chance of that than either of them considering coming here. There isn’t anything to draw them here but me and the possible necessity of helping each other. The foothills though, they speak loudly of home to all of us.

Did I miss my chance? Was it worth it to stay in this area for a job that I love, knowing it may disappear as things change. Already its more than I can afford to go visit my brother. Already house’s aren’t selling anymore, and not just out here in the country. They just sit and wait. Wait for things to go back to the way they were. Thing is, I don’t believe things will go back to the way they were nor should wait for them to. I believe we must live now as if we are going forward, hoping and working to shape the change into something eventually good – even if we don’t yet know how that might look.

What not to cut: Pet Care

In my effort to live within my means, nearly every item in my budget makes it onto the chopping block at some point or other. There are, however, a few things I’m entirely unwilling or unable to cut the cost of.

Veterinary care is a big one. Oh sure, I can think and plan all I want to try and cut sick visit expenses. When it comes down to it though, arriving home to find my extra fluffy, double coated dog huddled in a ball, shivering with fever, and looking beyond pathetic – we’re off to the vet. Budget be damned.

Lots of people recommend pet health insurance for those wanting to save money with unexpected vet bills like this last one. Personally, I prefer to set up my own version of  pet health insurance – a savings fund specifically for the dog. I plan out for the year how much it will cost to feed and care for my dog. Food, medicines, supplements, flea treatments, license, the annual check-up, a guesstimate for one sick visit per year and anything else I can think to include. I add it up, divide it by 12 months and start putting money aside. As expenses come up, I pull out the exact amount that I need to (or did) spend. If I was able to get some food at a discount or use a coupon for Flea treatment – the extra money stays in the account. If, by some miracle, we get to skip a sick visit one year (Berners aren’t exactly known for their good health), that money keeps earning interest to help out next year.

Yeah, I admit, it takes some effort to put that money aside each month and even more not to pull it out when other unexpected household expenses arise. Baka’s a large dog, with several health issues and her expenses average out to $140 a month. The medical portion of Baka’s expenses, the things that would be covered by ‘affordable” pet health insurance (no routine preventive care, no cancer care, no coverage for genetic conditions, not even urinalysis, spay/neuter, or dental care): about $30 worth of that $140. Yet the pet insurance premium would cost me $35 monthly. Looking through the restrictions, most of the health problems Baka has had over her life would not have been covered. At best, the diagnosis was covered, but not the multitude of tests that get you to the diagnosis.

The difference between my savings fund and an affordable pet health insurance – mine covers everything (even food). Its mostly money I’m going to have to spend anyway. Yet any time I find ways to save, I get to keep the extra. Any interest the fund earns, I get to keep. Any year when we don’t have to go to the vet for a sick visit, I get to keep the money. As my dog ages, the fund grows. Sometimes faster, sometimes slower depending on Baka’s health that year. The pet health insurance company isn’t likely to give me my premiums back if Baka has a healthy year – that is their profit after all.

Yes, I’d be hard pressed to come up with funds for a cancer diagnosis and treatment – but the affordable pet insurance doesn’t cover that either. Nor would they have covered Baka’s hip and elbow dysplasia (as the argument can be made that its likely genetic).  So I’m not really worse off.

No, its not a perfect plan, but it feels better than giving my money to some company, putting the vet bill on my credit card and waiting to see what little bit the insurance company will cover. At least I know going in what I can cover, what I can’t and what I might be willing to do even if I can’t afford it. More often than not, those vet bills on my credit card get paid off with money from the savings fund, before they start costing me interest.

Chest fridge food organization

So far my biggest challenge with the chest fridge is food organization. I finally broke down today and went to WalMart. I literally don’t remember the last time I shopped at WalMart, but I finally decided RubberMaid containers were the way to go for chest fridge food organization. WalMart being the land of cheap plastic crap – I figured I might as well go straight to the source.

I’ve come home with three rectangular containers. Each clear plastic, with a lid, very stack-able. They’ll mostly fill up the bottom portion of my small chest fridge, leaving just enough room for some taller condiments around the edges.  The first two are about four inches tall and will serve as veggie crisper and meats and cheeses drawer. The third is seven inches tall and will house a number of the shorter condiment jars – bbq sauce, salsa, horseradish, sour cream and the like. Juice, the water filter pitcher, my little jug of half & half, and eventually my slow rising bread dough will live on the compressor shelf with the all too frequently used Parmesan cheese.

I started out with my meats and cheeses container on the bottom of the freezer. Partly thinking the cooler temperature in the bottom of the freezer would help its contents last longer. Partly because I’m a cheese addict and wanted to see if I could force myself into better food choices by putting what I desire most underneath the condiments, with the healthy veggie crisper topmost. I’ve since revised this, as I’m quickly growing annoyed at having to pull out all three containers every time I want a nibble of cheese. Hey, I said I was a cheese addict. I guess I’ll leave the food related mind games for later, after I’ve adapted to the chest fridge a little more.

Other than the three containers and the compressor shelf, I also have the hanging, sliding basket that came with the freezer. It is the keeper of my most used items. Eggs, butter, bread, mustard and such. The trouble I’m having with the sliding basket is that its metal. In shifting things around, I find I sometimes forget to slide the basket back over and allow it to sit touching the external thermostat’s sensor bulb. This makes the sensor bulb think my chest fridge is cooler than it really is. So far it hasn’t been disastrous, but I did leave me wondering for a while why my chest fridge was suddenly having trouble getting down to temperature. I might swap this metal basket for the plastic basket out of the older, soon to be sold freezer. Just in case I get forgetful again.