pain, suicide, invisibility: dealing with an “imperfect” life part one

I haven’t written much about my health (mental/physical), or health issues since my April Marathon.

I been doing creative writing based on prompts. Some of me, of course, is hidden deep in my writing – my voice, my creative muse. It’s been interesting and fun to explore that side of my writing. It takes me away from the realities of my life.

Writing fiction, fantasy, fairy tales, etc. has been a diversion, a distraction (perhaps too much of one). My chronic pain has become much worse, some times so bad I cry. Where I hurt before becomes more intense. And, I developed new areas of chronic pain.

After years of owning my pain, it now has ownership over me. I’ve even considered making an appointment with my primary care physician to ask for low dose oxycodone to tide me over until the specialists I will need to see have answers. I didn’t. I won’t. I’m off opioids, taking tramadol for pain. 

It’s unclear as to which specialists to contact given the nature of the pain. Some will be dentists – which we have to pay for, others within our network such as neurologists. Some of the issues are more complicated that just “it hurts,” and I hope these are simply blimps in the state of my life.

I hope I get answers this time. For so many years there has been no diagnosis, or misdiagnoses. All my illness are invisible. When the physical/mental pain is unbearable, you will see it in my eyes.

I also have a lot of mental pain right now. I’m seeing a therapist, and we are trying to heal all the open wounds I have from past traumas. It hurts to heal as I have to replay parts of my life I’d rather forget, or try and find some wisp of the years I don’t remember/have blocked out.

I’ve told her things I have never told anyone else. It just feels good to talk, to open up. I actually cried a few times – and I had trained myself to never cry in front of anyone. It took a while. Sometime there were tears in my voice, not rolling down my cheeks.

Why this is part one? I wanted to discuss my worsening pain, changes to existing conditions and the need to find the causes (there will be more than one).

September is a busy awareness month: suicide, chronic pain, invisible illness. In the next post, I will provide links to various organizations. I will also reblog some posts I’ve written on these subjects.

So I hope you made it this far, and will come back to learn more about mental and physical health issues.

Thanks,

 

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23 thoughts on “pain, suicide, invisibility: dealing with an “imperfect” life part one

  1. phylor September 10, 2014 / 10:14 pm

    Pat — for some reason the reply button never showed up at the end of your last comment. I just realized today that I hadn’t responded. So Sorry. I wanted to thank you for the encouragement you have given me, and the support for writing, fighting demons, working towards healed, and dealing with all the stupid pains in my head.

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  2. sunshine and chaos September 6, 2014 / 2:36 pm

    So many of us going through the motions while not getting any kind of diagnosis or help from the doctors. I hope this time you do get some answers. You deserve it. Am so happy, though, that you’ve found a therapist that you feel comfortable and safe with to share your life’s experiences. Mental pain that needs to be healed is just as important as physical pain.

    Much love to you.

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    • phylor September 7, 2014 / 4:36 pm

      Thanks!
      Developing a plan on who to see for what first. I hope to be able to blog about journeying down the path of diagnosis again.
      So far the therapist thing has worked well. I’ve even cried in front of her — something I had trained myself as a child not to do — no matter how bad it hurts inside or out, never let anyone see you cry.
      How are things with you? I know I’ve neglected to visit all your Sunday Quotes. When I do go, I always find something inspiring!

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      • sunshine and chaos September 7, 2014 / 8:58 pm

        I’m not bad. Dealing with a pinched nerve (sciatic) and muscle spasms in my lower back the last few days. And the weather changes as summer starts losing it’s grip but fall is coming and I LOVE fall. Wish the weather would stay “fallish” as I love the sunny days with no humidity. It’s the only time of year that I start feeling closer to normal.

        Started learning to read tarot cards. That’s been my summer project. Using it to use my brain differently and the odd time to meditate on something. Sometimes I look at a card, think of it’s meaning and words and emotions just start coming out of nowhere. Reminds me of what I’m still dealing with.

        Don’t worry about the blog. I find now that I pick a day, go to a blog and have a couple of posts to look forward to and read.

        How are you doing other than what you’ve posted?

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        • phylor September 8, 2014 / 7:52 pm

          Tarot cards, very interesting. You are the second of my e-friends to turn to the tarot this summer! I used to read tarot cards, but I found myself being to right, so I stopped.
          It’s neat that you can use them for meditation, too!.
          How your lower back begins to behave.
          I love fall too! My favourite time of the year. Unfortunately, it’s been a dry summer and the leaves are falling already. Just a dead brown, no colour in them.
          Taking a weekly yoga class who is terrific. All of us have pain issues, so she modifies the postures to fit our problem areas. Last week was great. She always asks what we want to work on, and we all said massage as she does tai and other massage types.
          I went to the class in considerable pain, and left floating after some easy yoga postures, and a wonderful massage. She lives not far my place, and has offered to give me a short massage when she gets home from work. I hate to bother her, but given the pain, I think I’ll take her up on her offer.
          I’ll drop by and tell you some other stuff I’ve been up to.
          Here’s to the colourful fall
          The most beautiful season of all!

          Like

  3. Pat September 5, 2014 / 6:51 am

    Chronic pain — all too familiar; and when it’s undiagnosed, and ongoing – years in some cases – and so many doctors and tests and blah blah blah ….I completely understand. Dealing with it – or trying to cope with it – and let’s face it – the only thing certain about it —- it’s unpredictably predictable — is more than a full time job — and no one pays us for it. Too many suffer in silence, not wanting to burden others, or we tire of listening to ourselves – or others throwing “cheery bright platitudes” at us — makes the beast within me want to take absolute revenge.

    Anyhow, I thank you for sharing some of your story here – and look forward to more posts. Awareness is key. And the ability to have a thick skin at times, because lord knows, we often have to go to bat, to defend or explain ourselves, when we shouldn’t have to.

    I do hope your pain eases – and that you find alternate ways to help cope – even if it eases just a little. Sometimes a little bit of ease is better than none at all.

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    • phylor September 5, 2014 / 8:15 am

      Thanks, Pat, for sharing your experience with chronic pain. As an invisible illness, we can look “okay” while we are trying to smile through pain. Many doctors don’t understand it. People think you should just suck it up.
      You are so right! It is a full time job. Now that my pain owns me, I’m an indentured servant.

      Thursday is yoga night. Because we’re a small class, we get individual treatment. My instructor is very aware of our areas of pain, and last night I explained some of the new pain issues I’m dealing with. When asked what we wanted to work on, we all said massage as she is excellent in thai massage. So we did simple, easy postures, then we each got a short massage focusing on our problem areas.

      My instructor said to call her if I need a massage to loosen up my neck and shoulders. She lives a few minutes from my house. She’s offered before, but I know she is so busy, and trying to restart a relationship, I hate to bother her. She said “Call anyway, if I’m too busy, I’ll let you know.

      I felt like I was floating when I left. The gentle postures and massage toned down the pain and I felt the best I have in a long time — back when there were less areas of pain to deal with.

      Thanks for sharing your some of your experience with chronic pain. The next post will have links to sites focusing on awareness of chronic pain, invisible illness, and suicide prevention. I hope to have it up sometime today.

      Liked by 1 person

      • Pat September 5, 2014 / 9:21 am

        thanks for letting me share :)

        Oh, no — do I detect a neck/shoulder pain injury for you? If you do, you have my utmost sympathies and understanding!

        Absolutely rotten – chronic pain – in any form.

        I’m glad that you have found yoga as a pain/stress reliever – that is huge — smaller classes definitely mean more individualized attention, which is so positive, because some days, some things are just not possible, and maybe never will be – in full extension, poses etc.

        I’m looking forward to your post – well, actually all of them – when you have the time and are able. Sometimes, our best intentions just fall into the ditch, because we need to desperately take care of ourselves – so I understand about time.

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        • phylor September 5, 2014 / 11:00 am

          The worst of my pain is actually in my face. But, some of the pain is referred from impinged nerves in my neck. I have osteoarthritis in my neck and upper spine. I also get neck spasms. The tightness has been there for ever. My neck and shoulder muscles are so tight, when a therapist or doctor touches them, they are shocked, lol When I’m in grimace mode, it only tightens them further.
          There are other sources of pain in my face – too long a list. But nothing can be linked to an injury, even a slight one.
          Thanks for your interest and your understanding. I hope I get back ownership of my pain soon!

          Liked by 1 person

          • Pat September 5, 2014 / 12:15 pm

            oh damn damn damn —- this is so nasty – I’m at a loss for words — the worst – apart from the pain and then the lack of control of our lives – is never having an answer. It is beyond frustrating. So difficult to treat symptoms – even if it offers temporary relief – when no one can find a plausible cause. I can bet you are so tired of being misunderstood and “miscast” as a hypochondriac. My all time fave — “it’s all in your head.” Yup. it “sure is” that’s where the injury started (in my case) *sigh*

            Try to keep the faith and work through it – one moment and day at a time — but I do understand – greatly.

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            • phylor September 6, 2014 / 5:44 am

              Oh great — “it’s all in your head.” — is not very helpful at best, but when that was the site where the injury started, so inappropriate.
              I went for years without even being prescribed any sort of pain pill because CAT scans showed no damage! Much later I went to see a pain specialist for assessment. He was touching spots on the left side of my neck, trying to make my face hurt worse. He hit one spot, the pain was so intense, I screamed out loud! “So, I made your face hurt?” “No you made my neck hurt.” Site of impinged nerves with the pain referred/manifesting on the left side of my face. At least an answer for one pain!

              Liked by 1 person

              • Pat September 6, 2014 / 10:49 am

                *sigh* it’s just never easy to manage it all — especially when it’s not just one thing causing all the problems. It really can be such an awful issue. I’ve been off opiates for many years now (my choice) but there are way too many moments when I’d gladly welcome them back — but, either I’m completely nuts or just plain stupid – because I keep thinking there has to be a better or alternate way.

                Heads up – we do the best we can – each day. Some days are better than others – but still – I’d love to have a “normal” day —- I used to run around saying “I’d like my life back!” Now, it’s more “I’m going to create a New Life.” If only this came with a manual or set of instructions ….. ;)

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                • phylor September 8, 2014 / 8:14 pm

                  Oh, I’d love a manual or instructions. It might bring some order to my rather chaotic life..

                  A long time ago, I realized that my pain issues weren’t going to go away. There were steps to make it more manageable — but I didn’t get the kind of meds I needed to make the pain bearable until 2004.
                  One area of intense pain was alleviated when I went through surgical menopause when I was in my late 30s. But others sprung up to take it’s place.

                  I’m in therapy now to cleanse me of my traumatic past, so that I can heal the open wounds of fifty years, That, and conquering anxiety are painful, but I really need to try.

                  My pain management is to try to not go over the edge with the pain. So heating pads, non-opiate pain relievers, drifting (my form of meditation.

                  When I tried Lyrica, on my drs’ suggestion, the nerve pain caused by impinged nerves in my neck that radiated to my face when down. I know that Lyrica is a problematic drug, but I’ve experienced pain lowering. Of course, I would never recommend people try it — there are serious side effects. I was taking it off label, but now I see it advertised for fibro. For me, Lyric tamps down my nerve pain in my face, and doesn’t nothing else in turns of pain management.
                  I’ve been making comments as long as a post!
                  Hope you get your manual, but I think you can be the today you because you are strong in spirit, and a pain warrior!

                  Liked by 1 person

                  • phylor September 8, 2014 / 8:36 pm

                    PS: There are some alternative therapies for chronic pain such as turmeric (I’m allergic), massage, vitamins, acupressure and acupuncture, visiting a naturopath and/or a nutritionist. Trouble is most health issuances won’t pay for these alternative therapies, so I’ve never had much of a chance to try these alternative approaches.

                    I did see a naturopath 30 odd years ago, and the treatments did have a good effect, but that didn’t last long, and was in the process of planning at least a 6 week journey from west to east. I really think if I have continued the treatments, the good effect would have lasted longer.

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                  • Pat September 9, 2014 / 5:38 am

                    Lol — indeed, we are commenting as posts!

                    Pain warrior – I like that term — I think I shall begin to use it. And I would suggest, that you too are a pain warrior.

                    We all have to manage and cope as best we can – it’s just so bloody round about.

                    I’m on Lyrica – definitely takes the “internal pressure” I feel in my muscles and tissues off – mostly. If I get to feeling less like a human barometer, then that’s huge.

                    Yeah, opiates are the only thing that kill my pain – well, moderate it to a level where I can function reasonably well – but the idea of being on methadone – eventually, which is where I would have ended up – wasn’t a pleasing thought. So no more opiates. Of course, that was years ago – and now, with all the new crap – well I’d at least appreciate something that helps.

                    Anyhow … ’nuff about me.

                    I can completely understand how frustrating it is — and yeah, I too am a HOT/COLD, pop an OTC and pray like hell – and then, yeah, try to visualize and brain drain energy into meditation — but when it’s not enough. *sigh*

                    What an unfortunate type of pain you live with – definitely not pleasant at all. And I really hope that you find ways to keep it – well – at least a bearable level. Crazy thing, but does it change day to day and sometimes hour to hour for you too? I suspect it must. I swear – this is worse than trying to deal with a hyperactive 2 year old – not that I have any kids.

                    I’m sorry you suffer from anxiety and have a traumatic past. I so hear you on this. Been there seen it bought the (insert a barrage of swear words) T-shirt. But therapy can help – it’s not necessarily easy, of course, but every little bit of understanding, realization and “acceptance” in knowing what’s what, can eventually help heal wounds and allow for creation of a better life. The past doesn’t have to define us – or our now – or future.

                    You have my deepest understanding and encouragement and support Phylor — you too are a pain warrior – and so, let us continue to fight the good fight, as best we can.

                    Like

                    • phylor September 9, 2014 / 3:38 pm

                      Hi Pat — Pain Warrior Extraordinaire — sounds like you’ve been dealing/coping with chronic pain for a while.
                      Your two year old remark — when searching the images in Chronic Pain Info’s gallery, there was one that started, chronic pain is like having a two year old, but the pain never grows up. (or something like it)
                      Therapy is a chance for me to talk to someone about the stuff I’ve never told anyone, or maybe one person. Gotta heal these wounds, more ripped open these last ten years.
                      It took a long time to find a team that accepted my insurance. There is a medicating psychiatrist, who you see every three months. Usually I’m going in shorter time. Having a hard time with some of my meds — some too strong, others not strong enough.
                      I see my therapist in the same office. I saw the psychiatrist first, and she picked my therapist which has been so far, a good match.
                      I’m trying to move past the past, and be in the moment — today — and I’m just too scared to look at the future. Every time I wish for something, I feel like it isn’t going to work, based on past experiences, so it feels that not only were so many things “stolen” from me, I don’t dare to dream, wish for, hope for. Out of my vocabulary right now.
                      So thank you for the encouragement to fight on!. I need to find an outlet for this. And, of course, be allowed to feel awful when I do.
                      Sorry I haven’t dropped by to see you at your blog — pain has it’s own agenda. I’m glad we “met”
                      As to the craziness of my pain: I take Lyric to tamp down the pain on the left side of my face, I always have pain in my digestive system (worse lately, like every thing else!),
                      and I am prone to migraines. I get these tension-migraine headaches at the same time. Lots of fun.
                      Getting a 3d panoramic X-ray to see why my jaw is so sore, and other dental issues, a neurologist in October, so we go from there.
                      Well, I think I just wrote another post — Me and My Pain.
                      Take good care
                      pain warrior extraordinaire
                      Aren’t we a hurting pair
                      Sadly, people like us are everywhere! (feeling poetic this after noon)

                      Liked by 1 person

                    • Pat September 10, 2014 / 6:41 am

                      Hey Pain Warrior Extraordinaire – you hang in there – as best you can. And don’t be worrying about stopping by my space to check things out — it’s not going anywhere – and we must put ourselves first — so health and deciding what you want and need to do have to come first – always! (Easier said than done, I know.)

                      My pain is my White African Elephant Albert – 14 years now.

                      Anyhow – I really hope that you get some answers to the crazy puzzling riddles regarding the jaw pain etc. I can understand that – some days I can barely get a freaking teaspoon into my mouth. Anyhow, pass the mush I say. (We have to laugh – otherwise I’d be screaming mad – as in crazy.)

                      I’m glad that you are able to work with people who can help you, in therapy and all. It can be so difficult – but honestly, one day and moment at a time, and healing and dealing with past issues and traumas, and you WILL eventually get to the space – in safety – and allow yourself to dream and create again. You will. And think of this – every time you create a post – you’ve allowed yourself some breathing room to do just that. So small steps – but you’ll get there.

                      I’m glad we’ve “met” too —- Pain Warriors Extraordinaire indeed – and so, we move one —- hobble hobble hobbledy ;)

                      You take great care and I’ll see you out and about in the space we call cyber posts. :)

                      And hey, thanks for sharing your story and for sharing and posting about pain, suicide prevention month etc. You ARE inspiring and courageous – don’t you forget that. :)

                      Like

  4. Colline September 4, 2014 / 5:09 pm

    I cannot imagine the pain you must be experiencing. You are strong not to want to take the painkillers. Hope you are able to find someone who will diagnose your pain correctly.

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    • phylor September 4, 2014 / 8:19 pm

      Thanks Colline. I thought it was important to share my personal connections to the various health issues getting the ribbon spotlight this month, and that a month, week, or day isn’t enough. It’s good to promote awareness, but as folks at the http://invisibleillnessweek.com/ point out, invisible illness doesn’t disappear in October.

      Like

      • Colline September 5, 2014 / 7:49 am

        No it doesn’t. And reading your posts just helps me, as someone who is not experiencing the pain, understand someone who does.

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        • phylor September 5, 2014 / 8:17 am

          I’m glad my posts help you to understand chronic pain. Awareness is so important. It helps us cope to know that someone knows what we deal with. Thanks so much for increasing your awareness on chronic pain!

          Like

  5. summerstommy2 September 4, 2014 / 1:00 pm

    I understand the sheer difficulty in dealing with chronic pain phylor. I do hope you find some resolutions as you deal with all that is manifesting itself in this way. Take care my friend.

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    • phylor September 4, 2014 / 8:27 pm

      My original reply got gobbled up! Yoga class was very helpful. We all had our reasons for wanting a massage, so half the class was easy flexibility and relaxing postures. Then the wonderful massage. I left floating!
      Thank you for your concern. I’m glad you understand. We have these awareness months, weeks, days as an effort t get people to understand chronic pain, how we live with it, how we learn to function around it when we can.

      Like

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