It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?
For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.
After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill. I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.
Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment. I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.
Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.
Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it. And it really scares me. Suddenly, I’m scared about being like th
is forever. I thought I had accepted that and was okay with it. Not that I was giving up, just that I accepted things if they didn’t change. At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change. Now, I suddenly have options….plans. I am having a very hard time not being anxious about the future. I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back? The main thing I know is that, I don’t want to lose myself in this quest to get better. I don’t want to be afraid. If I don’t get better, I need to know that’s not the end of the world. I don’t want to start having to accept all of this all over again.
Each day I have begun to get more and more upset about things I simply can’t do. As usual, most days all I can do is go from the bed to the chair in the living room. But I tried hard not to let this get to me before. I tried hard to make the most out of every moment…no matter what. I’m trying now….but I am not doing as well as I have been. Then I hear the voice in my head….Be Gentle With Yourself. and I Breathe. I am doing the best I can. Yes, I’m a bit overwhelmed right now. Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.
Okay, let’s move on from this and let’s talk about what the plan for my future is right now.
I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results. I was supposed to get those yesterday, but I had to reschedule my appointment, guess who was too sick to go? Surprised? I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.
So, I’ll give you a break down of what is going on as of now…..
I saw the new ear doctor here. So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins. He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm. He wants me to keep track of how much Sodium I’m eating. (Okay, I laughed at that. I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced. I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues. So I tracked my food since I saw him, I admit I was curious too, the results? I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day. They say a low sodium diet is 2000mg a day. I don’t think I have a problem there.) I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears. I am to continue working with my headache specialist to get my migraines under control. We will talk more about killing off the balance center after doing all of this and seeing if it helps. Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.
(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture. I cried. I am not that kind of person. If my husband hadn’t been back there with me, I don’t know how I would have gotten through it. The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on. I thought that was strange. I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on. I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit. Yay! it really takes a lot to make me throw up now. I rarely throw up during an attack now. I get really nauseous, but I rarely throw up. I always thought it was the meds. Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped. Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)
He does think my Meniere’s is definitely autoimmune. Not that I want an autoimmune disease, but it does explain a lot. Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it. I just have so much going on, and everything gets worse with stress, and gets better with steroids. I often run a fever and no one can find a reason. I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another. They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it. Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it. It is visible on all scans and he responds to treatment, but the test for it comes back negative. So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.
So, there is the plan for now. I don’t know what will happen. How it will change. Or anything right now.
I feel that there will be a lot of change around the corner.
The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.
Picnic with Ants 
So you’re more upset about the future because there’s the possibility it might get better? Don’t want to get your hopes up? That’s what I thought you were saying in this post, but I’m not sure. ??
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No Rita, not exactly. I’m not upset, in the classical sense of the word. I’ve worked hard to accept life as it is, suddenly things are changing. I don’t know if this will help. It could actually make it worse, I’m happy to have hope, really.
The thing is….I’ve worked hard at living in this moment, forcing myself to make such huge decisions about my future, trying to decide what may happen, and being confronted with all of this again….I feel like I’m losing a part of me. The me who knows how to deal with all of this. The me who treasures each and every moment no matter what comes her way. I am suddenly scared I will stay this way forever….and I really don’t want to. If you had asked me that 2 months ago, I would have been okay with it. I would have said that I am continuing to look for avenues to help me, but I’ve accepted things.
I never thought when we found the avenues that I would feel that I just don’t know which way to turn. What if I make the wrong decision? What if I make things worse? Oh dear god, what if I make a decision that makes it worse?
And now, I can’t stop thinking about how much I’ve lost. Can I get some of it back? Or will I lose even more?
I’m not afraid of the hope, I’m terrified I’ll make a wrong decision. And if things fail im afraid I’ll never be able to be able to be at peace with things again.
I hope this makes more sense.
Thank you for caring.
xo
w
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Hope is a fragile thing to folks with chronic illness. You’ve trained yourself to accept the now; “now” you have to learn to accept the future. Not an easy task. Good luck! The test results will help determine quite a bit — no wonder you were disappointed.
I understand the scariness of the future. Options and choices seem daunting when there haven’t been many/any for a while. I think you can practice a kind of mindfulness about the future — accepting and grounding yourself in what is to be.
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Tale weaver….I think you understand what I was trying to say, and, I hope you are right.
I’m working on it.
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Thank you for the update. Hope you have a better year.
Happy New Years to you both.
Zia Dot
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When I read this it helped me to understand more about what is going on. Thank you for explaining. If it were me, I know I would have similar feelings and my heart goes out to you. You are an amazing woman and I know you will manage to find a way to make it work. You know we are behind you 1000%
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Oh my darling friend – you have NO IDEA how right on the spirit of your post is for one I have in draft (which I will link here whenever I get it finished and up). Setting intentions for the future IS scary – only those on whom fortune has shined without abating can honestly say otherwise.
It’s not that we lose hope, when life has been tough on us repeatedly, we tend to become afraid of hope (at least I do, anyway). Eventual disappointment seems lessened if we don’t expect better, doesn’t it? Logically and intellectually, of course, we know that we’re doomed if we don’t keep moving forward despite our fears. HOWEVER, those who fear what might happen can never really understand the feelings of those of us who fear what might happen AGAIN (usually because it HAS happened, again and again and again-again! — same tune, different verse) – despite our very best efforts, positive thinking and affirmations! Even though we DO understand that it is nearly impossible to move forward when we’ve lost our faith that things can and will EVER be different.
So many people fail to understand that mindfulness (accepting what IS), and gratitude (for the many, sometimes tiny things we have left that are so easy to overlook or take for granted) do not change the reality that some of us must figure out how to live a high quality life in the face of DAUNTING circumstances. The reminders to keep mindfulness and gratitude in place need to come from US, not from those who mean to be helpful, but are actually making us wrong — and making things all the more difficult as their chirpy comments echo long after they are back to their own successes-despite-challenges lives.
Fortune’s favorites don’t mean to be cruel when they aim their platitudes our way – it’s simply that they have little to no experience of having to deal with items totally out of their control, much less a plethora of same. They really do believe, poor fortunate souls, that if they “think right,” and “eat right” and “do right” that life can’t help but fall right in line with [at least most of] their hopes and dreams. They have NO idea of what life can be like for so many of us – OR – that we’re already coping amazingly well, despite all (and as well or better than they would, no doubt, if their sunny lives suddenly took a rather long, dark detour – not to mention if they had to walk that mile in our shoes).
Yes, there are many in third world countries who have it much tougher than even those of us with practiced empathy skills can imagine. We KNOW that! We simply want, need, and are entitled to be able to voice our fears sometimes, before we get back on the same exhausted horse to continue our journeys with courage and commitment. YOU do that better than anyone I know, so try not to internalize the shoulds of the casual commenters you meet along your pathway – because that’s all they are, really.
“Ignorance is bliss” – what does anybody think that really means?
I have recently run across a saying that I intend to do my best to embrace this year, “Bloom where you have been planted.” With your constant round of body-breakdowns, doctor’s visits, good days that are often a stretch to call “good,” it seems you have been “planted” in a life of the mind – at least for now. From where I type, your blog is certainly one way you bloom – and your wonderful relationship with your [did-you-get-the-LAST-good-guy-or-what?] hubby is another – and your constant search for practices that will make things even a tiny bit better. You are the embodiment of courage.
Please keep sharing your health challenges with all of us as you are able – it’s not only empathy inducing, it is encouraging to see how much you handle with grace and good humor. SO inspiring! It has kept me going through a long spate of some pretty dark days.
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to educate a world!”
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Thank you my dear friend for all the understanding and words of encouragement.
I wanted to say, the sweet woman who asked if I was afraid of hope, she does understand chronic illness.
She was just honestly confused by what she read. She is homebound because of her illnesses. She, really, just got lost in the post I think.
I really didn’t realize how much the previous decisions about things that have failed have come into play with this. Another friend pointed that out yesterday. You are both right. I’ve tried many things that hasn’t worked like they were supposed to, or worked for a bit then stopped….it’s really hard to go through this again. But a lot of it is, I don’t want to lose the me I am now during this search. I don’t want to get so wrapped up in thinking about what my life couldbe, what it isn’t now, what it used to be…..I don’t want to think so much about how much the quality of my life sucks. I don’t want to think that way. I’m already losing the me that doesn’t see that.
I don’t like it.
This is an internal battle. I have to figure out a better stategy.
But as I said, be gentle with myself, I’m doing the best I can.
You know you are pretty darn remarkable too.
xoxo
w
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I wasn’t referring to ANY of the comments on this post – just so you (and they) know. Your followers are amazingly supportive, many to most in a similar boat, so I believe I took that woman’s comment the way it was intended. Your response to her would have made it clear, in any case.
I was talking about those residual comments that somehow get stuck in our heads – from strangers we encounter on our journeys, “caring” professionals who darn well should know better, and even from well-intended friends and relatives who don’t know what to say and are trying to be helpful. I wish I’d made that clearer sooner – so thanks for the opportunity to clarify now.
I do believe I know what you mean about the fear of losing who you’ve been – who you ARE.
I never used to experience much anger, for example (to the extent that some of my therapists through the years believed I was in some kind of denial, no matter how much I tried to explain my world view and its impact on my emotions). Yet many days in the past few years I have felt like I was ALL anger – and sometimes about small and silly things – or things in the world that are totally out of my control. And it seems that none of my carefully honed skills help me lift myself up and out of all that anger – and that feels like loss of self to me.
I can still respond appropriately (most of the time, anyway) – but I worry sometimes that I am about to let loose on the world, becoming like those grumpy old men you read about. But mostly, I don’t like feeling so angry about life of late. And I don’t like feeling sorry for myself, or feeling depressed about how long it is taking me to recover from some past events, or feeling like I’ll never get it together again – like my current circumstances are all that is left for me.
It’s not who I was – who I AM. So I probably bend over backwards in compensation — backing off from setting boundaries that need to be set and railing about it in private, since I spend way too much time in isolation. (LOUSY for my mental health – and not ME.)
Thank GOD for blogging. It gives us both a touch of community and a voice we can recognize (and read back to ourselves when we begin to wonder) – at least it does that for me.
My comment was simply meant to remind you that you are not really losing yourSelf – that your feelings are valid, as understandable as any feelings that aren’t our own CAN be, and to be expected sometimes, given what you are dealing with – and remarkably WELL, I might add.)
In any case, whenever you need to be reminded about how special and wonderful you are (even when you feel like you need to vent from your “darker” side), I’m up for the job! And I’ll bet I’m not the ONLY one of your followers who feels that way.
xx,
mgh
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PS. I really GET the agony brought on by choices – DECISIONS!
There have been more than a few days this year when things were already tough enough, thank you very much. I didn’t know how I would cope at all if things got even worse because of a decision that only appeared misguided in hindsight. It’s kept me in bed some days, simply because I couldn’t face deciding anything at all – and I know you understand exactly what I mean by that.
Courage Camille, as they say in the theatre. You have always been your own best advocate (even in those times when you doubted yourself or allowed yourself to be swayed by the opinions of those supposed experts you have no choice but to consult). I have NO DOUBT that you will continue to make good decisions as you move forward, even though you are having to decide between some less-than-ideal choices.
MUCH love and all respect,
mgh
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Wendy – have you tried doing “blind” drawings of your feelings, fears (I’m not meaning to be cute – you know that’s what it’s called) when you start moving into that area? Sometimes non-verbal scribbling can be a powerful form of processing. You haven’t mentioned doing any art lately so I’m just wondering. Use color to express feelings.
It does sound like there is HOPE for you. There’s always love and here’s some from me. XXXXXXX O
j.
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