Aging with Invisible Illness

Steve7 dsc_029

I’ve always enjoyed getting older. I’ve found that I discover new ways to live my life every day and that as I age I’m developing a greater sense of who I am and how to live a good life. I have a good home to live in and a partner who loves me dearly. I have good food to eat and medical care and many other good things in my life. I’m glad to be where I am at this point in my life.

But I worry about getting older as well. Especially with all the illnesses I suffer from. I worry about what’s going to happen to me as time goes on. I’ve heard conflicting stories about people aging with Bipolar Disorder. Some seem to say that you can get better as you get older as long as you take good care of yourself. That seems to be the way to me.

I’ve seen what happens when people with Bipolar don’t take care of themselves, either because they are too sick to do it or are in denial about having the illness and won’t seek treatment or get help. I have a difficult time with the latter folks who suffer so much and cause the ones around them to suffer too because they are too scared to want to know the truth of their situation.

But I don’t blame them either. I understand not wanting to know I guess, tho it’s not my way of being. Maybe it’d be easier if I pretended that I just don’t have these illnesses and try to live a normal life and see if I could get by OK without the drugs and the therapy and all the help I receive from my partner and friends. Maybe it’d be easier to be in denial, especially as I get older. Lots of people do it.

It’d be so much simpler to not have to deal with all these things I deal with on a daily basis. It’s truly overwhelming sometimes and I crash and burn just trying to keep myself from doing just that. It’s a vicious circle and as I age the circle seems to get tighter around me. The options seem to be fewer and I have to make better choices.

I have to be very careful in how I live with my aging body now having all the same things that happen to anyone who is 63 years old. A lot of my problems are just because I’m getting older and it’s part of human nature to age and deteriorate, at least to some extent. But doing it with illness just makes it seem impossible to handle. It makes it much harder if you’re sick.

I take something like 50 odd pills every day, most of which are allopathic medicines tho many are also supplements I take from my Naturopath. I think complimentary medicine is a good way to go and I see various MDs, a Psychiatrist, a counselor, a naturopath and an acupuncturist, at least for now. We’ll see how that all goes but it’s helping me now at least.

I’ve talked about most of the problems I face on here already but for those new to my blog I’ll update a few things with a link to a previous post I did early on that describes my conditions well. Read this to get a good take on things you probably don’t know about me and my illnesses here: https://nakednerves.wordpress.com/2012/11/23/30-things-about-my-invisible-illnes-you-may-not-know/. It’s grown a bit since I wrote it but it’s still true.

I live with Bipolar Disorder Type II and it’s probably my most serious illness, tho the chronic intractable pain I live with is a close second and at times it’s number one. Both are too challenging to really be able to cope with well or easily. But I do it and I’m so grateful for the help I get to do so. Without the help I’d be dead I’m sure. Such is life.

I wonder what will happen to me in the same way most people do – will my partner outlive me or will he pass first is probably my biggest concern. I really don’t know what I’d do if I lost him. I don’t know if I could go on without him in my life. He brings me so much joy and caring. I guess it’s the way for anyone in love isn’t it? But being sick adds an extra poignancy to it. I not only love him, I need him and his help. A lot…

I have good health care – having both Medicare and Medicaid because of my split disability. It’s good coverage and I’m lucky to have it because it pays for all my medical bills except for some co -pays. But I don’t trust the way things are going in the Congress as far as people on disability and pubic assistance. There are too many mean people who’d like to take it away from me and I wouldn’t have a way to live then.

This is a huge fear – that of losing my medical care for some obscure reason the government comes up with to save money by taking it from the poorest among us. And I have been poor. I lived in public housing for 12 or 13 years before I met Louie and moved in with him so I know I can do that if I have to but I sure don’t want to.

Public housing is awful and tho it’s a good roof over your head and I’m grateful for that it really curtails your freedoms and it’s difficult a lot of the time. At least it was for me. Plus there’s a lot of stigma attached to being on disability and living in public housing. It just adds to the burden of being sick. People can be so cruel…

But really the biggest fear I have is that they cut my medications down to below my threshold for pain and I’ll have to live with the pain I experience on a daily basis without enough medication. I take a whole lot of morphine every day and have to get a special permit to get that much. Each time they renew it I come unglued till it’s approved. Someday they might not approve it, and what do I do then?

I’ve tried to cut back on the morphine but it only showed me that I need this much to stay OK and not be in super bad pain all the time. I need it and I’m dependent on it too. It’s all a hateful situation to be stuck on opiates and listen to all the hoopla about people dying of it and how it’s misused so they want to take it away from all of us. It’s terribly scary and frightening. I don’t know what I’d do without it. Stay in bed all day I guess. Sigh…

And my mind is slowly slipping too. Of course some of that is aging naturally, but some of it is because of the depression and manias I go thru. The pain makes me nuts too so it’s all a vicious circle and as I age it’s getting worse to handle it. I don’t have as much mulch as I used to have to deal with it all. It’s getting to be too much.

I suppose the take away from all this is that when you’re really sick you already have to live your life very carefully so you can survive and thrive. But when you get older and you’re sick it doubles the responsibility you have to yourself and your family to really do a good job of being good to yourself and being smart about what you do with your time and energy.

You only have so much of it as you age and it’s really important that you put it to good use. It’s imperative to live honestly and openly and to ask for help as you need it, which you will, and to accept the good will that there is in the world around you. There are helpers everywhere if you allow them into your life. Don’t shut down as you age. Stay active and awake and you’ll be able to live a good life as you get older, even with Invisible Illness.

Consciously Aging,

Steve

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20 comments on “Aging with Invisible Illness

  1. That was beautifully written Steve, and insightful. I was just thinking to myself today as I go through my own cycle’s dip, I don’t have as much mulch as I used to. Almost 60 now, and feeling it. Physically and otherwise. You deserve the great environment of support you have built for yourself. Your post points the way to what the self care priorities should be over the next decades, however many there may be.
    Thanks, as always for sharing yourself here.
    Dan

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    • Thank you Dan. I think a lot of us are thinking about aging these days. It seems to be the time, eh? We have to work harder to stay OK when we just want to rest and take it easy. No fair! I hope we’re all around for many more decades to be able to continue to share ourselves as best we can. 😉
      peace,
      Steve

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  2. Hello Steven, I am 65 and I really feel all this with you. I feel somehow, you are a person who keeps a self sustaining soul network around you – this includes the garden, Nature’s base. And despite all the anxieties with the morphine and these erratic times, you will tend to find yourself always supported adequately, because this is the Reality you have created and continue to create. It is truly frightful how the mind can torment us with what if – which is 90% fantasy. And the public information setup feeds the fantasy, the tension and the worry. Yet it is an infrastructure full of holes – and through these, the Reality you create and share, slips through and sustains itself. It is remarkable how you keep connecting, through the bipolar, the depression and the pain which are isolating fear factors. What is the physical pain you have? – is it a neuralgia, or your back? Love to you and Louie, and all my best,
    Jane

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    • Hello Jane. I kinda thought we were close to the same age, and I imagine you experience many of the same issues I face. I really appreciate your feedback on how I try to create a nurturing reality for myself. I do get caught up in the fantasies tho and my mind is a trickster and often teases me with what ifs as you say. And it’s true that society doesn’t help with this. Too much stigma and prejudice and lack of understanding. I think education is the key to helping people who are dealing with illness and aging, or aging all by itself. The more you know the better a reality you can create for yourself. My back is my main problem. I was run over by a lorrie on the freeway when I was 27 and it crunched my spine. I was lucky to survive it. I’ve been in pain ever since, tho I’ve still worked and made it worse of course… It’s hard to learn to pace yourself and be gentle with your infirmities when you’re young…. I also have fibromyalgia and arthritis and my whole body hurts me. And then with the bipolar it’s a vicious circle of harsh thoughts and pain. But I persevere. What else can I do? 😉
      Thank you so much for your comments and kind thoughts.
      peace,
      Steve

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  3. Hi Steve,
    It’s been awhile since I last talked to you. I’ve been thinking about you a lot lately and wondering how you’ve been doing. From what I know about you, you do take great care of yourself, you’ve even given me some pointers. I know it’s scary to think if we’re this sick at this age, what’s it going to be like in 10 or 20 years. I really try not to think about it, anymore. I just try to live in the moment and do the best I can in that moment only. I’m on disability and will be eligible for medicare in 2 years because where I live, you have to be on disability for 2 years before you can get medicare. For now, I have to pay 555.00/mo. just for insurance for myself. You know that disability doesn’t pay much and I don’t get any other help like food stamps or help with housing, etc. That 555.00/mo. for my insurance is supposed to be the “Affordable Care Act.” Isn’t that a joke? What I do have is a wonderful ex husband that takes great care of me and I, too, often wonder what will happen to me if something happens to him. I will be screwed. I will be living down under the bridge. But, I can’t spend today worrying about something in the future that may or may not happen. I also know how scary it is with the medication. You get tolerant to one and then some doctors won’t up the dose or move you up to the next higher up drug. I’ve been there, all the way to the top and the doctor overdosed me and almost killed me, so I took myself off of everything, went through terrible withdrawals. got home from the hospital and realized how much pain I was in and that I had made a terrible mistake by telling them I didn’t want any of that shit anymore. I was so afraid my doctor wouldn’t give me any narcotics or opiates, of which I hate and would rather not be taking them but you know the deal, with the extreme pain we have to. Luckily, my primary care doctor is very empathetic and compassionate and did put me back on two, one of which I take regularly and a more potent one I only take to keep me out of the ER. And I don’t have bipolar disorder, but I do have my own set of mental health issues, but I do know a few that do and every time they think they are fine and decide to go off their medication for that, they get so much worse. I hope you won’t do that. It’s nothing to be ashamed of. As I was once told by a doctor, having a mental illness is nothing to be ashamed of, it’s no different than having a problem with any other part of your body, like let’s say your heart. There’s just a stigma attached to mental illness, a problem of the brain. People are just ignorant and uneducated, but what she told me is true. People don’t freak out about someone having a heart problem, do they? That’s why we need to keep on blogging in order to educate those that don’t have a clue. keep doing what you’re doing, Steve. I think you’re doing a great job and you’ve given me some really great advice when I’ve been down and out. Gotta leave not to go see my therapist. Have a great day. Take care, my dear friend.
    Peace and hugs,
    Wild Thang aka Tammy:)

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    • Hey Wild Thang,
      It’s great to hear from you. I agree that it’s best not to think too much about the future. After all we can’t control it, but we can shape it some by how we act now. That’s what I try to do. I too try to stay in the moment, but sometimes that’s too hard because it’s just too hard… lovely cyclic logic, eh? I’m sorry to hear that it’s being so hard to get Medicare. It took me several years as well to finally get it. It sounds like you’re not getting the help you should be getting and I’m concerned about that. I’m so glad you have your ex-husband to help you out. It’s often the people in our lives that make it possible for us to continue. And the medication trip is also very scary. I know I have stopped my meds all at once on occasion and got really sick more than once. But I’ve learned my lesson I think, tho I tried to cut back on my morphine recently and it back fired on me. Oh well. I don’t mess with my psych meds at all tho. It’s too dangerous I’ve found. I’m lucky to have doctors who support me in my pain condition and my bipolar both. I’m not at all ashamed of being bipolar. If you look thru this blog you’ll find lots of posts about how I deal with it. People are just ignorant about mental illness and education is the key to helping us have better lives. I think we both try to do that. I know you have your own set of mental problems. How could you not with all you deal with? It’s terrible. But you and I are both survivors. I can tell by your words and what you write about yourself. I congratulate you in sticking in there and keeping it together as best you can. I’m glad you wrote me and thank you for all the kind words and encouragement. I wish you all the best in your own struggles and hope that things get better for you as they can. Hope you had a great therapy appointment. It can help a lot… Have a great day yourself dear…
      peace and love,
      Steve

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      • Good to hear from you, Steve. And, yes, I sure do have my own set of mental health problems. I suffer from depression, anxiety, PTSD, ADHD, BPD. Not ashamed, it’s just part of who I am. I get plenty of therapy. Lord! 3 times a week. 2 therapists now and starting next week I’ll have 3. LOL now isn’t that funny? How many therapists do you think it takes to fix Wild Thang?
        Me and you, buddy, we ARE survivors. I hate to hear of you struggling, but I do the same. For today, life is good. That can change at any moment, as you well know, but for now, all is “better” than yesterday. I’m really tired and can barely keep my eyes open so I best shut this laptop down for the night. Hope to talk to you soon.
        Peace, love, and hugs,
        Wild Thang:)

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        • It’s good we can share these things with each other. We are both survivors and we both know what it’s like to be so disabled that we can’t move. I did it to myself just last week when my back spasmed and I couldn’t walk for awhile, but I’m better now. I see my counselor every other week and my psych every other month. That seems to be all I can handle and sometimes it’s too much. They do help me tho and I’m grateful for that. I hope you get good support from your therapy too. I know how quickly things can change too and every day is different in some way or another. Keeps you on your toes tho, eh? 😉 I’m glad this has been a good day for you and I hope tomorrow is too. Beyond that we’ll just hope for the best… Good to hear from you too.
          peace and hugs,
          Steve

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          • Hi Steven buddy ole pal,
            Yes, I’m very glad that our paths have crossed and we now have each other to talk to about all this bullshit we live with. Excuse my language, but that’s how I feel about it. Sorry you’ve been having back spasms, I know those hurt like hell. My neck, back and shoulders and pretty much my whole body have been in a lot of pain, lately. Yes, therapy is helping me. I’m so much better than I was a year ago, but you know people like us can change in a second. I’ve now got 3 therapists and a case manager from my insurance company that calls me and talks to me every week for about 15-20 minutes. Hell, I’ve got a whole team to help me. Yes, all the therapy keeps me on my toes and if I have a really shitty day, I only have to wait one day to see a therapist, since I go on Mon., Wed., and Fri., then that case manager calls once a week. She called today and did some PHQ9 test on me, for depression. Needless to say, I flunked. LOL didn’t do too well on it. The questions were pertaining to the past 2 weeks. I scored a 20 out of 27, not good. You want to have lower points. LOL she said we’ll try it again next week. Yep, just over here hoping for the best for both of us. Now, you behave yourself and stay out of trouble, I’ll try to do the same, but no promises. I’ve got to try to get some sleep, even though I know I’ll be awake all night. Hopefully, you’ll get some sleep, my dear friend.
            Peace and hugs,
            Wild Thang:)

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            • Hey Tammy,
              I’m really glad to know that you have so much support with your therapy and case manager. I see so many people who suffer but refuse to get help. It doesn’t make sense to me. I think we have to ask for and get all the help we can to get thru this bullshit as you say. I agree, it’s a mess. I’m lucky to see a counselor at Seattle Counseling Service for Sexual Minorities, so I get another gay man to talk to. It really makes it nice for me cause I can talk about some intimate things more comfortably with him. I’ve been seeing him for over 10 years now and he helps me a lot. Sorry to hear about your test scores, but I’m not surprised. I’m sure I’d score the same or similarly. Depression is a daily part of my life but I try to live with it as best as I can. Having that support helps us both. My back is a bit better this week but still twingey and I have to move carefully. I did a bit of gardening yesterday and it spasmed again last night. Sigh. Oh well I have a hard time taking ti easy sometimes… 😉 Hope you have a good day today and feel a bit better if you can. I’m rooting for you!
              peace and love and hugs,
              Steve

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            • Hi Steve,
              Yes, I go to all this therapy because that’s what it’s going to take for me to feel “better” some day. I’ve gone to therapy off and on for the better part of my adult life, but I wasn’t really getting the care I needed. It doesn’t happen until you find the therapist(s) that you trust and feel totally comfortable with. I know I have a lot of things in common with one of my therapists which really helps because I know that she’s actually experienced some of the same things, she’s not going by what she learned from a text book. I think it’s good when therapists sometimes share that kind of information with you. I don’t understand why so many people would rather just be miserable and give up. I know I feel like giving up sometimes, but because I have such great help, I get past it and pick myself back up and carry on. Glad to know you have a wonderful therapist, too. It makes a big difference. Some people go to therapy and complain about the therapist being mean, rude, not understanding or whatever and I’m like why are you still going to that person, then? Most people do have to go to few, at least, to get the right one. You have to be comfortable enough to share everything and I mean everything, I know you already know that. People like me and you, we want nothing more than to feel better, so we get up and do something about it. Don’t complain if you don’t want to get the help you need, is my theory. Depression will probably always be a part of my life, as I have major depressive disorder and that’s what I was told by a psychiatrist at one point. But, that doesn’t mean I can’t feel better. It just means that I’ll always probably have to take some kind of medication for it and need therapy, maybe for a lifetime, I don’t know. They keep me alive and kick my ass when it needs to be kicked to get me up and going, to pull myself out of that all too familiar dark hole. Yep, you know that gardening is quite the exercise from what I hear, as you know I have no green thumb. You already know all about my gardening skills. LOL Try to take it easy for a few days so your back can recover. You sound like me with the all or nothing syndrome. Moderation is still something I struggle with, but am working on, not doing too well with it, but still working on it. I have faith that one day I will learn how to do just a little and be ok with it. I’m going to have a great day today because I have a friend that I’ve known since I was in the third grade and I haven’t seen her since I was 14, but we’ve kept in touch all these years, and she’s coming in town today and will be here till Thursday. I’m so excited I can’t hardly stand it. I hope you feel better soon and have the best day possible today. Thank you, and I’m rooting for you as well, my dear friend. Take care, till next time,:)
              Peace, love, hugs and all that other jazz,
              Wild Thang:)

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            • It’s good to hear that you have such good therapy Tammy. I know mine helps me a lot. As do my other health care practitioners. I try all sorts of things to alleviate my conditions but mostly i just try my best to live with it and do the best I can. Sounds like you do the same. I think it makes sense that we’d both try to over do it when we feel better. It’s just natural to want to get back into life I think. But it’s tricky and I’m still in pain from my back. But it’s OK. I’ve gotten to do some great things lately. I’ll write about them soon on my blogs. Take good care of yourself and I’ll talk with you soon.
              peace and love,
              Steve

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  4. Hello Steve, I am very fortunate not to have any health issues that I know of, but I do know about back pain, as I have a very close friend who has chronic severe lower back pain, ever since an accident 8 years ago – he fell down some stone stairs. He is getting a steroid injection this week, which he had to wait 9 months for, under our system now – it usually gives at least 30% relief once it settles. I am amazed at his courage and humanity, living with that level of pain, and with the anxiety and panic attacks it triggers, and the daily drug management. He is just hitting 60, so he too wonders about the wear and tear to come, and what to try to create for himself. He isn’t able to go out much.

    What a lot of us are in this boat, and keeping in touch. Education and information are power, because pain can be extremely isolating. Goodness yes, Steve! You persevere, and take each day as it comes. Good for you!
    Peace,
    Jane

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    • Hi Jane. I’m really glad to hear that you don’t have any serious health problems. But I’m sorry to hear about your friend. It must be terrible for him. I spent several months where I couldn’t get out much at all and was tethered to my bed so I relate to that kind of total disability. I did cortisone injections but they could hardly get the needle in because my discs are too compressed. It didn’t help me at all but I hope it helps your friend. They say surgery wouldn’t help me so I’m on meds and that’s the best I can do, aside from my exercises and walking and all the work I do to stay limber and keep going on. It’s troubling to wonder how this will develop as I get older. I have good support tho so I’m hopeful that I’ll get help as I need it. As I do now. I agree that education is so important. Pain can be terribly isolating and it’s so invisible that no one even knows you’re suffering with it. That makes it harder for me when people say how great my energy feels when I’m in the midst of a horrible migraine. It’s weird and unsettling.. but we do what we can to keep it together and keep going on with our lives. Thank you for your words of encouragement and support. Take good care of yourself.
      peace and love to you as well,
      Steve

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  5. Fear can be a horrible thing in our life, but you are so right with health care being the most of our worries in old age. When we started our family in the 80’s it just seemed so carefree. I don’t remember worrying about all this stuff + now it just seems health care dominates all our lives:-( It makes me sad. I have the same fear of how will we all manage our illnesses when they cost so much! Especially for those of us with preexisting conditions.
    I had CT’s yearly for the past decade + just in one decade it jumped from 1500 to 6000/more! Plus they asked me to pay upfront 250.00 which I had at the time. I never had to pay up front for my medical expenses. We have our deductible, but why did I have out of pocket expenses right away. We have our co-pay, but it now is you pay part of the bill upfront before you get the tests. What if I did not have it in my account that moment?

    I agree with you my greatest worry is health care. I am so sorry you suffer from bipolar + have so much pain. It must be difficult to get out of bed. You are not alone in worrying about the future….what helps me is to remember “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” The reason I garden and grow healthy food is to keep me healthy since that is how you make it through the older years…..I wish the best for you:-) robbie:-)

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    • Fear is my biggest challenge. Fear of what might happen and what does happen. I have to fight it daily. But I agree with your quote about today’s troubles being sufficient for today. It’s so true. If we can stay in the preset with our issues it’s so much easier to deal with them than it is to be in denial and not deal with them. I’m so sorry to hear about your health care costs. That’s appalling! I hope you continue to be able to pay for the things you need as you get older and money gets tighter and health costs go up more and more. I’m OK with my health care for now but I worry about being on disability and what the Congress will do to those of us on public assistance. I’m grateful for it but it scares me with so many people wanting to cut benefits from those of us who can least afford it. And getting the right medications is so crucial to me. I never used to take meds at all really but since I started having migraines at 25 I’ve taken all sorts of pain meds and then when my back went out it got even worse. Then the bipolar got me and now I take 50 pills a day every day just to stay functional. I’m also trying to to eat well and grow as much food as I can but I’ve still got a lot to learn in that realm. You’re way ahead of me there. But I’m learning to grow food and being able to know what you eat is so important. You’re a good role model for me Robbie and I’m so grateful for your comments and support for me. I feel the same for you and I love your garden. I wish you all the best!
      peace,
      Steve

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      • You are a survivor , so I have no doubt you are like a cat and you will land on your feet! I am too, so like a cat I plan on landing on my feet no matter how high they throw me!
        Having a blog is a great way to find out you have a lot of people out here that care about what happens. I choose to believe something good will happen to our health care. I do get down at times when I think of how most of us will retire with the highest bill we pay will be our health care! That is insane..something needs to change.

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        • I choose to believe something good will happen in all ways. I guess that’s why we’re survivors, eh? Being optimistic is good for your health! Blogging is a great way to connect with others who have similar or different opinions for sure. It’s very encouraging to see what all you can see here. It gives me Hope for change… 😉
          peace,
          Steve

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