Sunday, June 23, 2013

My Full-time Job...and Other Catastrophes

Ha! I bet at least one of you thought I finally "decided" to go back to work. Nope, sorry. Definitely not yet, and definitely not full-time. I already have a full-time job, which is something people do not understand. Lately I've been hearing it from my brother. He just assumes I should take on things he doesn't want to face because "I don't work".  Honestly, I don't have time to work. Taking care of myself is a full-time task for me, one I can hardly manage to do as well as I'd like. See, this job changes every day. Every. Day. Some things have taken discipline, and work to get right, like taking my medications. (I had to get a pill box. No, not like  M-F one, or an AM PM one. An actual 5x7 box to fit most of my essential medications and supplements. And I still have to decide every day which to take. I get to do things like try to figure out what is causing the pain in my lower abdomen. Is it my bladder (IC)? Is it the Endometriosis or Adenomyosis?  Is my belly distended from one of the above, or is the stomach virus acting up? Why am I nauseous? Actually, that doesn't really matter to me, as long as it's gone, so I gobble down as many ginger chews as it takes. Same if my stomach is upset. 
How badly do I need an anti-inflammatory today? (Are my pinky joints sore & red? Does my neck feel like I have a scorpion attached shooting irritating venom onto the vertebrae?) Is my stomach up for it, will the irritation to my stomach take that discomfort over the edge? 

Is it worth it to take 1 anti-histamine because I'm running out when it usually takes 3 twice a day to keep my allergies managed? Or do I take 2 and hope I find money to buy more sooner?

Did I get distracted and forget to take that beta blocker for my tachycardia? Or is my body just not responding so I need to take another and add something else?

How many days before my period? Is it still safe to take the blood thinning enzymes that help my allergies and inflammation and stomach? Or is it cutting it too close, risking copious bleeding that would be inconvenient and take me back a couple points over to being anemic and lower my volume even more, aggravating my POTS & OI?

I have no motivation and no energy. Must convince myself to eat breakfast. Can I summon the willpower to cook? Will I be okay up on my feet that long today or will it just wear me out and ruin the rest of my day? Will the food agree with me? Or will I end up having to lie down for hours? Which leads to anxiety because I've gotten nothing "productive" done. There are doctors to be called, forms to be filled out and signed and faxed for free or discounted medicine, utilities, stray dollars and cents to be transferred to cover bills and necessities, anything that can ease the stress of the never-ending cycle of running out of medications, money, and getting behind on my bills. 

I'm dying to go to the gym and use that wonderful recumbent bike. To sweat and push myself and feel like there's something physical I can STILL do. But even if I hadn't been having dizzy spells, and my stomach wasn't draining the energy out of me, I need to shower. But I can't shower, because I don't have any clean towels or clothes, so I have to do laundry, and when I'm done with that I'll be too tired for the gym.

Oh, wait, it's too hot to do laundry. I'm barely keeping cool, and my body is not coping as well as I thought with the heat, not regulating properly, hence the dizzy spells, squeezing headaches every time I stand up, crappy balance, and feeling like I'm going to fall over, even hanging onto whatever wall or doorway or whatever.

Did I mention I need to call the over-worked Community Clinic staff to follow up on a Specialist referral, important test result, fax, make an appointment, choose one, or a couple. Wait on hold. Get voicemail that I know from experience won't get answered for a week or two. And billing at the hospital ER I ended up going to because I was in pain & couldn't afford to go to another county for the third time in a week to try and get the tests that I needed that they keep telling me the other doctor will do? I have to stop and rest for a bit.

But it doesn't last long. My car insurance is expired. I'm out of a couple of medications. I need toiletries, from the 99 cents store, if I can recycle some plastic bottles for the gas to get there, but if I leave this late in the day, there won't be parking when I get back, exhausted, and not be able to walk a couple of blocks, with packages, purse, water, etc. It's hot out. And there might be lines. Lines are like a little piece of hell on Earth to people with Orthostatic Intolerance & related issues... Anxiety, sweating, feeling sick, trying to act normal, while shifting stances as subtly as possible to keep the blood from pooling...

And I forgot to talk to my lawyer's office. And a couple of other of things on the lists that are what keep me sane.

My family, who I'm lucky if I can beg and cajole to help me only on the very vitalest of matters, always has some drama or needs to be tip-toed around or want me to do something for them. 

My hair is turning greyer and greyer by the day, it's no longer annoying, it's almost shocking. And I can't afford to dye it. My nails are finally growing normally instead of splitting, peeling, and breaking down to the quick, shorter than in my life. At least that is a good sign. But I can probably kiss that goodbye if I go back to the stress of a few weeks back. It's not that I'm that vain and adore my nails, although I'm told they're impressive (when they're normal) it's just that nails are an indicator of health, and having them growing again was a good sign. 

I finally take a break from all the phone calls and thinking and planning and medicating, and stern prioritizing. I'm starting to feel that odd anxious sick feeling and forgetting to breathe that denotes I've been upright far too long, and I've got to lie down, for real this time, flat, so I turn my attention to the TV because if I let my mind wander, I will find something else I need to do like, at least empty the dishwasher, and end up with my upper back in that weird crippling pain from not enough blood getting to it. Then my brother gets home, just as I'm finally winding down and resting. And find some reason to get mad. Perhaps, that I didn't do the dishes. Which was actually on my to do list, but maybe prioritized too low?

And because, like I said, there is never a dull moment, or happy news in my family, after a day like this, I find out my Father, who hasn't bothered to get in contact in two years since he took off like a thief in the night and dumped the wreckage of his former life in my lap, all because I wouldn't indulge his bad behavior and I got maybe a little hysterical on him after he bailed, has had a stroke. And no one bothered to tell us. For weeks it turns out. 4-5 siblings he has, and each bearing them many cousins of mine, and not one said a word. Not even to my brother, who although he was very hurt and upset by his actions, never said a bad word to him...

So nevermind that I didn't go to South America to try and ride out the time till my hearing back in February because I was too sick and realized if I was going to end up in the hospital I wanted it to be in California rather than the foreign-ness of the 3rd World... and that now I get airsickness, with vertigo that lasts for days afterwards, and travelling just to Texas wiped me out despite wheelchair service, and that last time I went there I got altitude sickness that triggered acute episodes of POTS (and it wasn't chronic back then, like it is now) I was willing to go, because I know my brother couldn't handle it, he takes after my Dad and avoid confronting problems. No money, but where there's a will there's a way I told him. And this is what I do. I'm good at emergencies. I fix problems. I do more than I should for the people I care about, without thought to the cost to me, and then I get nothing in return. And I'm kind of tired of it. And I start to realize I couldn't and shouldn't do this alone. In fact, if anyone is not wanted there, it's me. Later, upon more contemplation and a little research, I realize just how foolhardy it would be to take on such a journey alone with my health in the state it is and the effect the altitude would undoubtedly have, unless I wanted to end up in the hospital there myself! After all, I had an episode so bad just from staying one night in the capital there that I came home on the next flight, because I couldn't stand feeling so sick and having no one really give a darn what I needed, and I swore I'd never go on a trip where I was so out of control again.  Really, I might just end up in the hospital here even before leaving here, I've been having old symptoms come back all this week. 
Plus travelling when sick takes extra forethought & preparation.  And somehow, still, all of this evades my brother. All he can see is how this affects him and that I don't work. 

I know my presence may not even be wanted there, and that my Father is in loving hands, and I have to take a back seat and let my brother step up for once. But I'm so tired of this life, of being sick, and helpless, and having a family that not only doesn't support me, but gives me no hope by the way they live their own lives. And I find myself having that feeling like I can't breathe again. I want to escape this nightmare of life where nothing ever goes right and everything goes wrong, but I can't give up now, and I'm angry that I can't do anything about it. 

Monday, June 17, 2013


I'm free. I can breathe again. I don't care that I'm not wanted by one sad excuse for a man looking for a way to convince himself he can't love me because he's too afraid. And I have him to thank for it, oddly. He asked me a question, meant to make me understand the rationality of why he couldn't be with me. He asked me, if he told me that the doctor told him he was going blind, and there might be a surgery that would cure it, but it wasn't a sure thing, and his HMO didn't want to cover it and was on his last appeal with them, what would my concerns be? I thought for a second, not knowing what to say, and then suddenly, it was as if my heart took over and started to speak for me. I told him that my concern would be for to help him. I'd help him fight the HMO to get that surgery, and be supportive and reassure him that my feelings for him wouldn't change even if he did go blind. And if he did I'd be there to help him figure things out.

He said something like, wouldn't you expect him to learn how to use a can and read braille, and I said, well, of course, but that's a given; you are a very smart man, so why wouldn't you do everything you possibly could to adjust to your new life? I wouldn't insult your inteligence like that. Obviously you'd do the obvious. Silence.

I had told him already that, asking me to say I would work and clean (apparently his ideal ideas of contributing to a relationship) when I didn't know that I could was like asking him to promise to love me forever...both ludicrous at the stage of our "relationship" that we were in. I told him he was anal and callous and had said very hurtful things to me and I thought he was just scared. 

Then, after his silence, it hit me...I don't think I was even in love with him yet, but I would be willing to give him a chance anyhow, if the situation was reversed. I would still give it a try, there would be no question...if he had been as fabulously amazing as I had thought before all this happened, I truly, in  my heart, know that I would. Even if it was too hard for him to learn to read Braille and he couldn't adjust well enough to find a job and be traditionally productive, as long as he tried, I'd be okay with it. As long as he didn't become mean and cranky, lol. That is how much love I have in my heart, to offer. I don't think that's a small thing. You can pay people to clean. I can still cook a bit, and if it was all I had to do as far as household chores, I think I could do it well, daily with great effort how I am now, but love moves mountains. And I can love, and support, and spread joy, and with some love and support for myself there's not telling what strength I might draw or how much my health would improve, and what I could go on to do. 

In short, I have so much to offer. And if I have that much love and compassion in my heart, why should I settle for any less from someone else? I realized that he absolutely was not the person I thought I was falling in love with, who I confided my entire situation to and still wanted to be around me. He wasn't there any,more, and even if he changed his mind, the fact that he had treated me the way he treated me and thought it was okay, made him irrevocably undesirable. I told him even if he changed his mind, it was too late, I thanked him for asking that question, and told him that now I understood exactly what I wanted, and that he was not who I thought he was.

And I felt a weight lifted off my chest. I felt free. I was afraid it wouldn't last, like earlier in the evening, when I came home happy from the movies and then felt it slipping away...But this time I was nearly positive it would last. And sure enough, I woke up this morning, not feeling  paralyzed, feeling free, hungry for real food, motivated to get to the gym, get out, take what life my body could handle from the world and live...

Friday, June 7, 2013

Relationships with M.E.

It's official. I finally, definitively, officially, actually had a relationship end because I'm sick.
The funny thing is, I never planned on even dating this person, or anyone for that matter, for another year or so, ideally after getting my Disability money and improving the state of my health a little. It just seemed to overwhelming, too scary with risks like these. Too hard to even attempt. Intellectually, I know that there are plenty of chronically ill people, even people with FM & M.E. & even with all the things I have who have spouses. I like to joke that if some of the people on that TV show where they trade spouses can find spouses, then surely there's someone for me, out there, somewhere. I just didn't want to start looking, and potentially failing at it, now.

Things are bad enough now. Today, I had the first episode of generalized anxiety that I can attribute to my hearing coming up. Hate, hate, HATE it. To make things worse, I was too tired to take any anxiety medicine, which tends to make me sleepy, so I had to tough it out. Way too much to do, and was wayy too tired already. Eventually, I went to the gym and worked some of it off there, but I couldn't finish the full time that I set, and my kidneys were already feeling sore. (Recovering from a kidney infection.)

Anyhow. I met this person. Never intended to date him, so I told him all the gory details of my life; my current abode-ally challengedness, my family dysfunction, my illness & ensuing unemployment. I actually thought it might be amusing (in a sick sad sort of way) to see him run off scared. But something strange happened. He didn't. Nothing I said seemed to shock him, and he shared some of the "adventures" of his life as well. Then I started to realize he actually was kind of attractive. He was smart. He gets sarcasm. And we had so much fun, even if it meant I was pushing myself. It was so wonderful to feel alive and wanted again.

It's all so strange. One week he's telling me how much he likes me, can't get enough of me, the next I feel like I'm being avoided. I just am not up to games. To make a long story short, after much frustration and feeling like a crazy, needy, mess of a girl and hating myself for it, I ended it. Or I thought I did. It wasn't too hard after being questioned about what I thought our lives together would be like in 5 years, what would I be able to contribute. I can't work, I can't clean... I was blown away. The crazy thing is, I understood the logic. It's what I would think too. But I would think it a lot sooner, not after one or both of us is starting to fall for each other. Still, I was speechless. True, or not, it still seemed a bit heartless, and worse, completely unexpected, considering I'd laid it out on the table from thebeginning. I'm afraid I was too shocked to defend myself, so I said we should call it off.

Ironically, he would let me go. Right when I'm getting the wounds covered and healing, he starts sending me messages saying he misses me, and I melt.

Earlier today, I was wondering how I was going to get through the next week without having a nervous breakdown. Last hearing, I was anxious for days, and I usually don't stress over things like that till the last minute, when it's too late. Then afterwards, I just felt so exposed, fragile, I kept asking my poor Mother for copious amounts of hugs, and cuddling with the puppy.
Today, I felt so alone for awhile, in all this. And the guy kept texting, but was back to not answering mine...coming up with excuses not to see me. I decided I couldn't stand the confusion and anxiety anymore, so i asked him and it came down to this: If I can't work, and I can't clean house, I'm not a "fit" for him. Rationally, well, it's very rational. But to me, love is more than rational. He kept trying to corner me into saying I would work or clean. But really, I can't make those promises. If there's one thing this illness has taught me, is that sometimes, you can plan all you want, and well..."the best laid plans"...Life has other ideas. Besides, it seemed just too rigid, almost controlling.

I asked, So does this mean you don't believe I can't work and/or I'm not worthy of love because I can't do those things? The answer," no, it just means you're not a fit for me.'I suppose it's possible. And it hurts. But I half suspect it's just cowardice. Fear. An excuse, and a cruel on at that. (And where was this conclusion when I was spilling my guts?)

I could've just said I'd do it, but I don't know, and I don't lie easily. And I don't want to have to trick someone into falling in love with me. Not only don't I not know, what life with M.E. will bring,  but I've gotten to the point where it almost seems arrogant to be so rigid in planning that you really believe things will turn out some way because you planned it. I can't plan anything. Even with the case won, the money, medical care, there are no guarantees, although I have faith, believe it will happen, and believe I can recover at least part of my health and be productive again.
But life with M.E. is in constant flux. So I need someone who will take me as I am. Take all the love I have to give, the smiles I bring to your face, the food I'd love to prepare, my arms around you, my lips on yours. Take the love I have waiting for your children, the joy I bring to holidays I've long missed celebrating properly. Take my listening ear. Let me cheer you up when you're down, take everything I still have to give, I think it would be enough, but if you don't, if your fear and need to control doesn't allow it, I just ask to be left alone, once and for all, to nurse my wounds and steel myself for the week ahead. No more head games, false hope, rational words that cut me to the quick. I'll be fine. I can hardly believe this is happening, especially 6 weeks in to a relationship, it seems bizarre to be forced to plan our future 5 years from now, but I'll be fine. I have more important things to worry about and plenty to keep me busy. I'm so tired of stress. My kidneys are killing me now...
Oh well. I will survive, I will thrive, and I will rise again. And maybe the fear and cowardice of really loving someone will wear off him when I am doing as well as I hope, but it'll be too late...

"One day [I'] 'll have a beautiful life, one day, [I]'ll be the sun, in somebody, else's eyes..." Paraphrased from Black, by Pearl Jam