Tag Archives: Feldenkrais

Outpatient Pain Rehabilitation: Week Two

Dear Audy,

You could say that the title of my last post was misleading. It wasn’t really day one, it was week one. I should mention that the program that I am participating in involves eight weeks of going in to the hospital on one day each week.

The second week of outpatient activities has given me a little more to work with, albeit I did leave on that day feeling a frustrated that I had to sit through more basic education to get to the helpful part.


(source)


The topic of the group education session was “Pain & Cognition”. This is quite an interesting topic once you get past the introductions, however, that’s the thing about these sessions, they aren’t designed to go past the introductions.

This particular session barely went past “here is the handout”. I was the only person who showed up, aside from the teacher, until fifteen minutes into the class time. When one other person showed up, she began introducing the topic to the two of us. When another couple of people showed up five or ten minutes later, we began again.

I’m not particularly bothered by punctuality, we all run late sometimes. What bothered me about this session was that the teacher had no idea who was expected to be attending and was rather flippant about just skipping the class if no one else had shown up.

The lack of organisation infuriated me. I don’t just magically appear at the hospital, I need to be driven there and then my driver needs to go off and entertain themselves for three and a half hours before collecting me again. I don’t think it’s too much to ask that the hospital at know if a class will be going ahead in time to inform those who are traveling to attend.

To sum up the class, we have an immediate memory, short term memory and long term memory and sometimes pain can interfere with these functions. Woah, man.

The more helpful part of the day was the time spent with the exercise physiologist and occupational therapist. I was finally able to get a bit physical and start figuring out what my baseline tolerance for certain activities is.

The approach that this program offers toward pacing is to determine baselines and then begin to strengthen by working from half that amount of time. For example, if I can sit for ten minutes before increasing the pain, then I should only sit for five minutes before changing my posture.

In theory, I really like this approach. In reality, it’s a bloody difficult thing to try and figure out. It’s been almost a week and I’m still not really sure what my baselines are, I’m just sort of going with the flow and trying to move every time I notice a pain increase. I realise that the point of this approach is to move before that, however I guess find the before that is a process that in itself takes some figuring out.

Other things that I have been working on improving include my core strength and my body mechanics. Feldenkrais is progressively heightening my proprioception and I am becoming more aware of when my body is moving efficiently and when it isn’t. Working from both this angle and the “correct ways to do things” offered by the occupational therapist, I hope to reach some sort of happy, keeps me moving forward, level of function.

I’m not so sure that there is a correct way of doing things, you see, so I’m not about to go get all rigid about posture when I have had far more success using Feldenkrais principles. I do, however, need to increase my general fitness and strength and there are definitely ways of doing this that are less harmful than others. It’s for this reason that it helps to work with someone who is trained in the more rigid approach to body mechanics.

Working with the exercise physiologist helped me to recognise some small ways that I am still moving that are lopsided. I had no idea that I was still limping through my left leg to protect my hip when I climb stairs. It’s only a tiny amount, however tiny amounts of things can have huge consequences in a sensitised body. Awareness of this habit means that I can be on the watch for imbalance and attempt to get walking happening evenly again.

I haven’t been particularly successfully at getting this baselines thing happening, however I have been very successful this week at managing my pain effectively. I have been increasing the amount of housework that I can get done, doing more driving, riding my exercise bike, stepping up my discipline at turning to Feldenkrais as soon as the pain starts to rise and just taking all round better care of myself. I definitely feel like I’m winning.

I’m am back off for the third day of outpatient therapy this week. I have decided to skip the frustrating group session part and just show up for the active part. I don’t need that negative element getting in the way of learning from the positive ones. I tried to let them know that I did not want to attend any more of the sessions, however, of course, there was no one to let know, no one co-ordinator.

I really don’t know if they are expecting me or not, it’s been a bit like bashing my head against a wall trying to get an answer to “does your bureaucracy state that I need to attend the education sessions in order to participate in occupational therapy and physiotherapy?”. I’m just going to go with “no, it doesn’t” and see if anybody notices.

Alrighty then, I’d better give this baseline figuring out thing another go. I’ve been sitting in this particular position for about half an hour. The pain is only ever so slightly increased. Does that count? The increase pretty much happened when I sat down, but then stabilised. DOES THAT COUNT? Oh, ugh. It’s confusing, it is.

I had soreness in my hands today that I recognise as driving vibration triggered, yet I have only driven for ten minutes since Sunday. Is this latent pain from Sunday’s driving? WHAT ON EARTH COUNTS?

Love & Little Conclusion,
Caf
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  • A Story Of Assessment, Stress & Coping As Best I Know

    Dear Audy,

    The past week contained quite the battle between myself and a source of anxiety that I have struggled with. In my last video, I mentioned that I am beginning a new outpatient pain rehabilitation plan. Last Thursday, I went in for the assessment for this and left feeling battered, bewildered and a little bullied. It’s taken a few sleeps, but I’ve waded through this confusion for far enough that I am beginning to understand it.


    (source)


    The overwhelming feelings have actually turned out advantageous as I am now aware of exactly what I hope to achieve from participating in further outpatient therapy. It’s always a nice moment of clarity to realise that a seemingly negative experience doesn’t necessarily need to have a negative outcome.

    A physical and psychological assessment is a gruelling experience. Having seen so many practitioners since my CRPS began, I have lost a lot of patience for going over the details of my daily life. It’s just one of those things that has to be done; a new practitioner needs to know a patient’s history and get to know their condition and what they require help with.

    I try to dissociate from my annoyance at this procedure. I aim to greet each new practitioner with an open mind and not relate new experiences to traumatic ones that I have previously endured.

    The assessment involved three consultations; one with an occupational therapist, one with a psychologist and the last with a physiotherapist.

    The OT consultation went fine. I was able to chat with the therapist about the things that I can do, what I would like to be able to do and where I feel that I need more help to get a sustainable sense of pacing happening. My solo efforts on this front are consistently thwarted by unforeseeable circumstances and I am always looking for tips to better manage daily living. I was tested on basic functions such as bending, reaching and carrying. It was no surprise to discover that I am a total weakling.

    The psychological assessment was a little bit harder to deal with. The activity of the previous appointment had sent my hands and forearms into a burning flare. It can be hard to concentrate during rising pain, however I got through it. I find that the hardest thing with psychological exams is needing to discuss everything in my life that could possibly upset me. It’s all very personal stuff and can be quite confronting to share the intimate details of my life with a stranger. Especially when I know that person is quite literally judging me – not by a moral compass but by psychological evaluation criteria.

    Psychology is a topic that fascinated me long before I ever had to deal with CRPS. I enjoy learning more about how and why I am who I am. Even more so, I enjoy learning about how artificially constructed and therefore changeable many personality traits are. I police my thoughts, try to let go anxiety that is purely for anxiety’s sake and keep an eye out for particular thought habits that are increasing my suffering with no benefit.

    I think that putting so much time and energy into learning about how to cope with the psychological ramifications of chronic pain has caused me to be hesitant to any sort of treatment that involves somebody else trying to figure out what’s going on in my head. That’s my job.

    I recognise that most patients that psychologists see aren’t yet approaching their pain from a self empowered perspective. I am hopeful that now the first awkward consultation is over I can learn from the sessions.

    There is always more to learn, always another perspective and nobody who is perfect at coping all the time.

    The final part of the outpatient assessment was with the physiotherapist and was the source of most of my follow-up anxiety. Being the third appointment of a long day (for me) it was getting difficult to think clearly. I had a lot of trouble articulating what I wanted from the program, other than to increase my general strength and methods for coping.

    During the psych examination, I was asked whether I would prefer group or individual treatment. I expressed that I would prefer individual so that I don’t find myself feeling held back by the idiot (you know, that idiot that is in every group situation, the one that asks a million unnecessary questions and whom everybody else wants to strangle). Since participating in a lot of group activities during my inpatient program in 2009, I have recognised that I learn more and progress more quickly with one on one help.

    After having discussed this with the psychologist and watching her nod and understand what I was saying, it was a little confusing to have the physiotherapist almost manipulate me into agreeing to a group program. I was told that individual sessions are generally only for patients who can’t cope with being in a group. That’s fine and all, but why did I need to think about and express why I would prefer individual treatment if that was the bottom line?

    This sort of withholding of information, whether intentional or not, is incredibly frustrating. I am yet to come across any sort of hospital treatment in which the practitioners are upfront and honest about what the patient can expect. I think it’s important for doctors and associated practitioners to recognise that even though they deal with the same program week after week, a patient doesn’t immediately know what to expect without proper explanation.

    The second point of absolute frustration was being told that I was not to continue to see my Feldenkrais practitioner during the outpatient treatment. For some reason (I expect boringly bureaucratic and more related to receiving outside physio or psych treatment than Feldenkrais in particular), they wanted me to stop the one course of action that reduces my pain without medication whilst upping my exercise routine, which will undoubtedly cause increases in pain until I gain strength. This did not sit well with me at all.

    I left the physiotherapist appointment feeling like I was just about to be shoved back into a production line of activities that are designed to help with beginner pain management in general. This was the opposite sort of treatment that I need, which is for the physiotherapist to work in with the Feldenkrais that is already helping me and to cater specifically to improving my function around my pain, for me, in my situation.

    I’ve been through the cookie cutter before and I came out crumbled. I have no intention of changing the things that I am already doing, and that are helping me, in order to fit into the box of what doctors hope will help chronic pain patients.

    For days after the assessment, I found myself waking confused and very agitated. My mind was circling with anxious thoughts about the program, related upsetting emotions from my previous bad experiences and a general feeling of dread about embarking on what seemed like a useless plan of repetition.

    Thanks to forcing myself to confront the anxiety and try to get at its roots, I have been able to get past the mental obstacles that were standing in my way.

    The physiotherapist spoke quite a bit about hydrotherapy. I had been feeling some aversion to hydrotherapy in the weeks leading up to this assessment. I was too exhausted to process my thoughts about this during the session and the result was a lingering dread that I would have to participate and that I would fail at continuing hydrotherapy after completing the 8-week program. In the real world, getting to and from the pool and all the associated elements of going in a swimming pool (the heat, changing, showering, hair removal) are hard to tolerate, raise flares and leave me feeling helpless.

    This realisation led me to the discovery of what I actually do want to gain from outpatient rehabilitation: to learn more techniques for strengthening my body, managing my pacing and managing the pain without needing to travel to do so. I want an exercise program that I can practise and build on at home. I want guidance so that I don’t get lost in the beginning when pain flares up and plans need altering.

    Knowing what I want is the first step to getting just that out of this program.

    To ease my anxiety, I contacted the hospital for further information. I was able to speak to the Exercise Physiologist (no, I don’t really know what that means either) that I will consult with during the program. She was able to alleviate my concerns about being trapped in group classes and hydrotherapy. Gaining a clear idea of my goals helped me to accurately express what I needed, I was also able to get a clear idea about how the first session will run and no longer feel like this Thursday will bring several hours of a physically and psychologically exhausting unknown.

    I feel stronger in my reasoning for wanting to continue with my Feldenkrais and I feel capable of explaining this to the physiotherapist with whom I’ll actually be working – a different person to the one who assessed me. This is another piece of relieving news on account of I just didn’t gel with the rigidity of that practitioner.

    The goal of both pain rehabilitation and Feldenkrais is to give the patient methods for coping with their situation without requiring regular treatment from others. That’s my goal too, however I don’t feel the need to pretend that I will miraculously be able to cope with sudden stoppage of a treatment that lowers my pain, at this stage. I also feel hesitant about taking this advice from people running a program that does not include any Feldenkrais at all, I can’t help feeling like they perhaps don’t really know what I’m talking about.

    After sorting through all of this, I am feeling much more positive about the program. I feel much more up to the task of asking for what I need and expressing why and how certain approaches do or don’t work for me.

    You could even say that I’m feeling a little excited about beginning another chapter in my journey to recovery.

    Love & Thought Filing,
    Caf

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  • And Sew It Starts

    Dear Audy,

    Two days in and going strong.

    Well, not particularly strong, but going nonetheless.

    Wednesday morning I was bouncing about filled with motivation. I managed to wake, eat breakfast and get in two coffees before beginning my Feldenkrais followed by sewing for 15 minutes plan. There are a lot of things that go along with sewing that take up much more time that the actual sewing itself. The project that I’m working on was only cut out, but still pinned to the pattern. Yesterday I cut out a piece I was missing and marked and removed the pattern piece from that part. Sorting out where I was up to and performing that one task took up my allotted sewing time.

    My workspace. The dress I am working on is named Camille, I actually began her back in October, 2010.



    Today was much more difficult.

    Yesterday evening Sammy got a little bit sick (probably from a recent food change) and he needed to be bathed. Sammy does not go in the bath without a walk. I was on my own last night, so I needed to buck up, walk the dogs and wash the fluffy one before bed. I did as much stretching as I could fit in afterward, but it was still a very sore night for sleeping and an incredibly stiff wake up.

    Minor setbacks don’t stop happening just because we try to plan around them. Physical tasks aren’t always able to wait until there is someone else around. In this instance I had to push through pain and exhaustion to take proper care of my furry little friend.

    I am sore and fatigued, but not upset by this little extra challenge, even though it was on the day that I commenced my sewing challenge. When I am able to overcome something unexpected without an emotional breakdown, it is a good sign that my coping efforts are coming along nicely.

    So, yes, today was much more difficult. I woke late, didn’t fit in breakfast, nor did I feel ready to do my 15 minutes of “work”. However, I did it anyway. I managed to motivate myself into my little work room just in time to get warmed up and start sewing at 11am. Just in time.

    The 11am time that I have set aside for this sewing works well. It gives me a good reason to keep a regular waking schedule and to get my body and digestive system moving early in the day. It also provides a good deadline for me to aim for when I am feeling overwhelmed, like I was this morning.

    I know that I can get things done when I have to. I know that I am capable of more than I currently do. These are the two main points that are motivating me to give this new plan a good crack. If I can find the right balance of physical activity and rest, I will be able to get more things done without setting off pain flares. I just know it.

    Today, all that fit into my 15 minutes was marking and unpinning all pieces of the outer dress, bar the pieces that will become the skirt. That’s it. That’s all I could fit in.

    One of the biggest parts of this challenge is stopping at the end, oh how much I would like to keep going! I’ve tried that, though, I’ve tried working too hard and I always end up in Flaretown. This time, I’m trying something different.

    I plan to implement my sewing schedule from Monday to Thursday. I think this is enough to begin with. I usually have a Feldenkrais appointment on Friday mornings and I’m not about to start pushing for seven days a week straight off. Four will be fine. I started on Wednesday, so I might get excited and fit in an extra session on Saturday, I shall see how body pulls up after the work so far.

    Love & Getting Somewhere Slowly,
    Caf

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  • Some Kind Of Wonderful

    Dear Audy,

    My brain started today singing. The second time. Earlier, it awoke screaming and in desperation for some actually relaxing rest, I painkillered it and slipped back into the dreamosphere. The second time, the awakening was much more pleasant. I successfully slept off a lot of the sore and that is never a situation that I fail to be rapt about!

    Perhaps you wonder what it sang, my brain? Some Kind Of Wonderful…


    (source)


    Today it is May and may I say, the change of months brings better days. Days that I have waited for since the disruption of the seasons’ change took hold of my rehabilitative resolve and shook with a windy storm of flares, setbacks and vicious uncertainty.

    I am not running through the trees just yet. Change is slow, but I smile as I sense it happening.

    Often, after a period of exacerbated chronic pain, I launch back into life with a vigour too vigorous for my system to handle and the result is of the one step forward, two back variety. I have learned that pacing my productivity is the key to maintaining an overall upward incline in my recovery.

    The first thing that I tend to do is clean. Few things are as soul destroying as being incapable of caring for oneself, which includes being able to complete one’s own chores. I can never do as much as I’d like. I can never power through a total house clean. I can do a few tasks, in stages, gently. I must balance the work with rest, stretching and Feldenkrais – which calms the nervous system and helps to hold off an action induced flare. I must consider the activities that I plan to participate in during the following days; recovering from cleaning can take longer than one single set of the time between sunrise and sunset.

    I have not yet found a balance that allows me to maintain the clean home that I’d like. I am in a perpetual state of trying to catch up before the same chores need performing again. Anything with stages becomes quickly boring if one never progresses past the first couple. Maintaining a home is necessarily a process with many stages.

    This week, I broke from my usual tendency. Rather than using the limited power in my ridiculously weak body to clean inside, I took advantage of the sunny days and went out into the yard. The garden is usually the last place to get looked after and as I never do make it to the end of the looking-after list, it desperately needed attention.

    I worked slowly and easily, paying attention to the way my body moved and adjusting anything that was uncomfortable. I clipped back the overgrown trees and bushes, cleaned up long neglected and plentiful dead leaves, along with the business that the doggies regularly take care of out there.

    Big weeds got the careful yank, all got the spray. This rental has a badly designed garden for maintenance, there are rocks in some very silly places and no weed matting beneath them. Pulling the weeds out isn’t all that effective, unfortunately they need the occasional poison.


    (source)


    There is something emotionally cleansing about literal weeding. Pruning has a similar effect. My yard is looking much larger without all that overgrowth and my mind feels peaceful knowing that I accomplished something that I had long felt was beyond my limits.

    Nothing is beyond my limits if I can find the right way to break it down. It surprises me how long it has taken for me to think to apply my pacing techniques to outside cleaning instead of inside cleaning. Especially considering that I truly enjoy spending time in the sun and the garden. I have often lamented that my pain inhibits me from playing with and caring for my plants.

    There is no mirage as blindingly powerful as a the limits that we believe restrict us. Of course, some limits are undeniable, however so many can be worked around or overcome. So many.

    Gardening caused flaring; inside chores cause flaring too. For some reason, I had previously considered the latter to be alright to deal with but the former too much. I was playing the role of an anchor when I needed to learn to morph into a sail. I had to let go of one in order to be the other. This week, I let the maid have time off and was the gardener, for I have not the strength to be both simultaneously, which is not the same thing as not having the strength to be both.

    Sleeping in this morning was some kind of wonderful because I felt like I had earned it. My body ached with the tiresome whining of rarely worked muscles, but my mind felt the freedom of a limit that exists no longer.

    Life has been really hard since I made the decision to stop taking Lyrica over a month ago. Finally, the volume on my pain and sensitivity is back within my reach. I don’t have to fear it being turned up a little because I trust in my practise of Feldenkrais and meditation to calm it back down. I don’t have to fear the hand pain because it burns less brightly than before and I once again have the power to assist my body in lowering the pain.

    When things get too intense, the pain is in control but when I can get the level down a little bit, it becomes manageable and I am able to feel empowered rather than trapped by a situation beyond my control. All of the work that I have put into relearning movement through Feldenkrais and becoming aware of my own patterns meant that I was able to do something that I have long been too frightened to attempt.

    Today I rest with the knowledge that my aches, pains and fatigue will pass and this feeling of self empowerment is well worth enduring them.

    Do you have limits that you have placed on yourself? Were they, or are they limits?

    And are they really?

    Love & Overcoming,
    Caf

    P.S. Rellacafa is now rocking out on Facebook. I am actually rather loving the Pages format, it means that I can post about chronic pain, both mine and posts from other people and share it with anyone who cares to follow, not just those that are my friends. There’s a nifty little widget over there on the right if you would like to “Like” and join me, or head to http://facebook.com/Rellacafa to check it out.

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  • Some Days Are Long

    Dear Audy,

    At night I take the little pills that bring the sweet escape of unconsciousness. The pain is faded then, although sometimes it invades my dreams. Sometimes my dreams hurt as much as reality. On the better nights, my dream body is whole and free from suffering. I never know which way it’s going to go. The unpredictability of life with chronic pain pervades past a single level of consciousness. How wonderful.


    (source)


    I wake and my hands and forearms feel numb and dead. Cold, immovable and corpse-like. They aren’t dead though, no, dead is much less painful from what I imagine. I start to wriggle and little by little proprioception awakens and internal lights start going on. The things that they illuminate would be better stayed in shadows.

    The aching never ceases. It hurts where I have been touching the mattress as I slept. It hurts where one limb is pressed against another. It hurts through any joints that have dared to move into an angle as I was distracted by The Sandman. It hurts through the ones that didn’t dare.

    The inside lights brighten as the seconds tick by. Perhaps they are set incorrectly. Nothing inside of a living other need ever burn that brightly. For it burns, you see. The light. It burns like its fuel is the very sun, which somehow exists under the skin. It burns like an acid cocktail. It burns red.

    I can see the fire in my hands. The boiling blood. It shades them purple; red and purple. The colour increases at a lowered angle and fades if I raise my arms. It’s like a circus trick. Look at my white hand, my red hand, look how I can swap them. See how quickly the magic happens. Is it art if I suffer enough?

    Must not focus on the pain. Shift attention. Find another, a something else. Find a happy memory. Find a mindful moment. Feel love. Search and seek for it’s not enough to simply suffer. It’s not enough to be static, I must move. It’s not enough to sit without fighting. Fight to release for it’s not enough to fight through force.

    The motions, I must move through them. Let the thoughts flow. Away. Let regret seep out; jealousy, loss, apparent futility, all must leave lest they pull me off the balance beam. Why is the path so narrow? I want to take wider steps. Let that go, too.

    Feldenkrais will help. Move small and slowly. So small that the movements can barely be seen. Be kind to my nervous system. Massage it into a more peaceful method of functioning. Trust in the results. Trust that the method will continue to pay off. Remember that so often it lowers the pain level considerably.

    Though frustrated, I have been more crippled. I have been more incapacitated than today. I have felt more pain. I have had less hope.

    Everything takes more time than I’d like and is over too quickly.

    And yes, you sting me hands. You sting like needles through my knuckles. You make everything so difficult these days. However, I hurt you now. I needed to say this something. I somehow needed to write this something. I am sinking and this is what I can throw overboard. This something.

    The motions, I must move through them. Let the thoughts flow away. Eat. That’s important, even when unappealing. Remember the worse times so that I might see that this narrow path is still the right one. The motions, I must move through them. Search and seek for it’s not enough to simply suffer. It’s not enough to sit without fighting.

    
Time to shake off this cloak built from annoyance at repeated pain, read something inspirational and get on with things. Wallowing isn’t a battle tactic.

    Love & Venting,
    Caf

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  • Under The Weather

    Dear Audy,

    I feel like I am falling into a bit of a funk. Or perhaps, I fell weeks ago and I’m still just scrambling around in the quicksand. We all know how helpful it is to scramble in quicksand, but I need to do something to try to get back out again.


    (source)


    The change of seasons always knocks me about, regardless of which season is blending into its successor. Currently the days are shorter, the cold is crisper and the days of overhead grey are becoming more frequent. Thankfully, the sun is shining this morning, which is a lovely mood booster.

    Last week, I thought I was finally getting out of the sludge, until I went to my regular osteopathy appointment and discovered that my jaw had become so tense that it was sitting out of place. It doesn’t exactly fit in its place anymore, so it’s usually a bit wonky, however this occasion was much more severe than usual.

    Due to my current inflation in hypersensitivity, having my jaw massaged and re-aligned was rather excruciating. There was no talking from me for a couple of days.

    As is the usual case with Complex Regional Pain Syndrome and Central Neural Sensitisation, one problem led to more. The jaw pain triggered extra tension through my neck and shoulders, which set off more pain and (most frustratingly) has left my hands flaring like it’s 2009.

    Typing this is unpleasant, but I’m getting very bored and don’t have the option of using voice software and having the writing process hurt any less.

    Despite my mandibular setback, I still managed to drive myself to my appointments this week. I am learning to drive in a more relaxed state and thus cause less pain, however I can’t help suspecting that my extra time behind the wheel is also contributing to my hands flaring.

    Then there was the day that I was feeling a little better and so put all my energy into cleaning. I hate not being able to clean when I like, not being able to do my laundry or clean the floors. I try to pace these activities, but I’m still at a level where the pace has to be set to minimal chores and maximal rest. I can’t get maidy with it on days when I have to do anything else. Exciting lifestyle, huh?

    It’s hard to handle the knowledge that independence can literally cripple me; crazy to comprehend that taking care of myself means hurting myself. I’m thankful that I’ve pushed myself from wheelchair to my current condition by working through similar painful adjustments, or I’m not sure I’d be able keep trying to find a pace at which I can keep my pain down and still be productive.

    I don’t think I ever will, but I have moments every day when I want to just give up. When I don’t want to deal with the pain, the rehabilitation, the uncertainty so badly that I’d do almost anything to leave my body.

    The only choice that I have is to try and let go of the negative thoughts, try to relax both physically and mentally, focus on how far I have come and do as much as I can, by way of meditation and Feldenkrais, to get the pain level down.

    I so desperately want more choices. I want to write, I want to sew, I want to cook and shop and clean on my own schedule. I want to study, to work, to earn money and go on a holiday. I want to wake up with the knowledge that the day ahead is mine to do with what I please, not just what my body will allow. I want the choice to be lazy, I’m so tired of having incapacitation thrust upon me.

    It does us little good to want for things that we cannot have, so I am working on that. I will keep trying to do the things that I can do and keep believing that time will allow me to extend my repertoire.

    Love & Longing,
    Caf

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  • A New Article, A Video & A Little Tale Of Accomplishment

    Dear Audy,

    I actually feel better than I have been feeling over the past few weeks, everybody cheer!

    In exciting news, my latest article for ABC Ramp Up, Chronic pain; unlocking the mystery, can be found here.

    In the spirit of spreading awareness, I also wanted to share this video. It introduces a few people experiencing chronic pain and illness, including Complex Regional Pain Syndrome. Ashley has done a fantastic job putting this together! I am also super impressed by Sarah, one of the subjects, who is able to jump rope on a pogo stick…



    I think that I am finally starting to adjust to being without Lyrica. My Feldenkrais practitioner gave an excellent explanation for what it feels like to come off medication like this: for years, the medication has been keeping my hypersensitivity volume dial on low and now it’s been turned up. That doesn’t mean that I need the medication to get the pain level back down, that simply means I need to remain calm as my body adjusts. Even though my symptoms have been flaring around like crazy, it’s only temporary.

    My body is actually responding to this increase in pain and hypersensitivity better than it would have at earlier stages of my journey with CRPS. By being committed to practising Feldenkrais every day, I have been able to keep most of my muscles free and my skeleton aligned. This makes a big difference to the amount of pain I feel and will help me to get through this adjustment period as quickly as possible.

    Despite my pain, I managed to take myself out last night to see a friend performing in the Melbourne International Comedy Festival. This was a huge achievement as I had been trying to make it to the show all week! A glass of wine and a good laugh made for a very pleasant evening indeed. I am so glad that my determination was able to overcome my fear. Sure, I am extra sore today from the exertion, but I don’t have to do anything today, so that doesn’t really matter now, does it?

    I am not afraid that this pain is actually damaging to me at all, it is simply something that exists, is unpleasant and will pass. This acceptance and understanding has been something that I’ve been trying to achieve for years, I feel so triumphant for finally getting there!

    I hurt, I tire, but I am not afraid.

    Love & Progress,
    Caf

    Adamant About Taming The Agony & Adjustment Beast

    Dear Audy,

    As so often happens to people living with chronic pain, I was knocked off my progression horse this week. His name is Pierre the Palomino (the metaphorical horse) and sometimes he can be a right prick about bucking around psychotically when I am trying to get back on him.


    (source)


    I am kind of still recovering from the big weekend that I mentioned over a week ago. My body hasn’t been playing very nice since then, despite my best efforts to whip it back into line. I managed to calm my system down enough to go out to a BBQ birthday backyard movie screening, which was a wonderful break from solitude, however the hypersensitive owies were peaking again by the time I woke up the following morning.

    This flare and, more notably, the failure of it to abate after so many days coincides with my total liberation from Lyrica. I still feel trapped in a perpetual state of medicinal hangover. I am not sleeping soundly and continue to awake to an unbelievable amount of pain lingering through my limbs. My arms have been especially uncomfortable; they seem to believe that even the slightest bend in a elbow or wrist is akin to cutting off the blood supply with a rubber band.

    I’ve had excessive pain and stiffness plaguing my shoulders, neck and jaw. I have been working with my Feldenkrais practitioner to increase my awareness of movement and tension in this area at a deeper level than I have previously. Any sort of step up in treatment has a ramification and I’m not surprised that my shoulders and neck are causing me grief whilst they adjust to no longer being able to glide along being sore below my internal radar.

    Along with the excessive pain, I have been dragged down by fatigue. I feel like I am tired all the time, even after I have had 6-7 hours sleep. Concentration has been elusive and thus too my ability to distract and entertain myself. Fatigue combined with pain is a classic recipe for depressive thoughts and I’ve been fending those off, fastidiously trying to catch them and free them before they can play tricks on my mental wellbeing.

    Setbacks are always to be expected and I have to keep ploughing on through this rough patch until healing momentum builds once more. I have been doing close to two hours of Feldenkrais everyday and, along with some meditation, this helps to ease the pain. I have spent a lot of time soaking in the bath, which also eases the pain by helping my angry muscles let go of their tension. I am almost constantly trying to regulate my breath and focusing on simple breathing to help avoid over-thinking and keep that depression at bay.

    To keep entertained, I have been watching old episodes of Gilmore Girls. Ah, life is so simple and dreamy in Star’s Hollow. It’s nice revisiting some old friends and all, but I am missing new episodes of my more current fictional favourites. The return of United States Of Tara has me fairly excited but, let’s face it, pretty much every television viewing minute is simply filling in time until there are more new episodes of Parks And Recreation. Man, that show leaves me in fits. The good kind of fits.

    I’ve been reading my usual concoction of trash and genius. The trash is hardly worth mentioning, however I am looking forward to having the brain power to share some reviews of the quality reading that I have enjoyed. In truth, I am simply looking forward to having more brain power in general so that I can ponder properly again, rather than just absorbing the information.

    I have to keep my faith that remaining level-headed, continuing to practise a lot of Feldenkrais, continuing my relaxation methods and moving at a sustainable pace will get me through this adjustment period. Giving into my frustration about the situation will only cause me anguish, so that’s not on my to-do list for today.

    I have gotten through much, much worse than this before. Every flare that I beat is one flare closer to the day when I’ll beat this chronic pain right out of my life. The battle gets boring sometimes, but at least I have an action plan and some past proof that sticking to its regiment will improve my condition.

    Has life been spraying you with lemon juice lately? Perhaps (I hope) it’s been kinder and hit you with the sugar water?

    Love & Endurance,
    Caf

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  • Winning At Having A Weekend

    Dear Audy,

    I am currently feeling the toll of what was a very big weekend in my world! As well as the Eddie Vedder concert on Thursday, I went out for more music on Saturday night. This was a last minute plan as a friend had an unexpectedly spare ticket to see Bonjah at Northcote Social Club.

    I won’t go into the whole review thing for that gig, it wouldn’t be fair. My friend and I were both extremely tired and suffering from a serious case of the vagues.


    I still have vague face.


    We went out for pizza beforehand and by the time the band took to the stage at 11:20pm, we were already thinking about the wonderful comfort of our respective beds. Probably not the best frame of mind for getting into the reggae groove. It wasn’t a bad night, the band was entertaining, I always like a super-percussion guy or gal (i.e. person who plays a whole bunch of bangy type and often obscure instruments) and we did have a little boogie before flaking out before the end of the set.

    I must admit, it was nice to be able to have a little groove before my body said, “You sit back down. You sit back down NOW.” I’d decided to give a standing gig a trial without asking for a chair, so it turned out to be lucky there are a couple of benches at the back of this venue! I am not strong enough to stand for a couple of hours, but hey, I gave it a good go.

    I was also still able to drive home afterward, so I am calling the night a win.

    I am trying to keep in mind that I don’t need to fear flares; to remember that with Feldenkrais, I have a way to manage them. This mindset makes surviving pain in the moment a whole lot easier. In the past, I would start to worry when I began to get sore from being out. I’d envision myself trapped on the couch for a week trying to recover, I’d unhelpfully imagine those unbearable levels of pain that my body is capable of going into.

    All of that worry used to set off the negative kind of self-fulfilling prophecies. It also used to take the shine off of whatever I was out trying to enjoy. It’s wonderful to be at the point where I can be in pain, understand that the pain will be increased by an activity, yet still enjoy that activity in the moment and not resent the pain for existing afterward, nor myself for having set it off. It’s impossible to move forward in life if I don’t push my own boundaries.

    Being calm about things actually helps to keep the flares at lower levels and the recovery time to a minimum. This was a lucky fact over the weekend, as Bonjah wasn’t the end of my adventures, I still had a family reunion to attend on Sunday!

    Getting up Sunday morning was tough…but I did it. I had gotten about four or five hours sleep. I knew I wasn’t going to get moving by the time my parental ride was leaving, so I quickly decided to handle driving myself and leave a bit later.

    A few months ago, I never would have felt confident enough to drive after a few busy days. A great feeling of freedom helped to motivate me to get in the car and get to the event. It was nice to spend some time with the extended family, many of whom I hadn’t seen in years. They had done things like turn into adults, which is always a little mind-blowing.

    Naturally, I am sore, blah-headed and exhausted today. Thankfully, I don’t have to do anything other than recover. Well, recover and acquire coffee beans…I had to drink instant coffee this morning and this does not make my taste-buds sing, it makes them whine and grimace whilst caffeine addiction fuels the pouring of this foul substance down my throat.

    Most of the day has passed and I have done so far is lazily read blogs and internet fiddle. I’m pretty happy with that. My plans for the rest of the afternoon include some Feldenkrais, to help get rid of some of these niggly aches and pains, and also a good long soak in the bath tub. Probably a nap, too, I mean, if I’m thinking big…

    Yesterday, a three-year-old said something that hit a note with me. I love that I never know when or where inspiration or understanding will strike. I’ll ponder the little lesson that he reminded me of and write to you again soon…

    What did you win at this weekend?

    Love & Snooze Now,
    Caf

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  • Shopping Makes Appointment Days Better

    Dear Audy,

    It’s always nice when one gets a chance to turn a trip to the doctor into a much more exciting event, whether that be through combination with a friendly catch up or by mixing in a little shopping.

    Enduring a chronic illness involves enduring a lot of doctor appointments, even when there’s not a particular lot that the doctor can do. I see my GP monthly for updated medical forms and prescriptions, as well as a nice little check in session.

    Today’s appointment was lovely on account of that I didn’t have anything new and horrible to report! With the amount of pain worsening steps I have taken over the past few years, that is an accomplishment all on its own. I was finally able to tell my GP that I am happy with my new pain specialist and that things are moving along nicely, a fabulous advancement from the days when I was constantly crabby and confused.

    I was happy to report my reduction of Lyrica; I am quite certain that I don’t need to be on this medication. I’ll hang on to it as it still might be helpful during intense, burning flares, but it’s nice to be almost free of such an expensive form of minimal-to-no pain relief! You were helpful, Lyrica, but it was never going to be a forever thing between us…

    After visiting the doc, I had a couple of hours to wander the city while I waited for my chauffeur to return. I took advantage of my waiting time to buy a new pair of sunglasses. This has been on my to do list for a year or so, it was thrilling to finally (mentally) cross it off. Not to mention, it’s wonderful to be able to see the world glare-free through glass again! Plastic inbetweeny sunnies are never fun.



    Thankfully, my legs have been on my side today and strolling around the shops doesn’t seem to have caused much damage! I tried to be smart about my wandering, I chose my store destination beforehand and didn’t get distracted by looking at pretty things on the way there. I left a lot of time to get back to my pick up point so that I didn’t have to worry about walking quickly or stressing.

    I tried to keep in touch with my body whilst I was walking around. I tried to ensure that I was balancing efficiently and moving with all of me, rather than just a limb here or there. Keeping an eye on relaxed breathing also helped to make the adventure more enjoyable.

    Being able to shop alone is not something that I take for granted after spending years unable to get myself anywhere. It’s ever so nice to just go and look and buy what I need without having to consider that I’m taking up someone else’s time!

    Now that I’m home, into maintenance mode I go. I’m taking a little computer break, but shall not be drawn into its time dissolving vortex for long. Instead, I’m planning a good, hour long Feldenkrais session and some meditation. Possibly in the reverse order. Probably one of my favourite Feldenkrais exercises involving a delicious back massage from a towel on the floor. Towels can be surprisingly effective masseurs!

    My spine is still spinning a bit from my hip hiccup, however I’m getting things back on track! The good track. The track that doesn’t just lead back around the where I came from. Here’s to more hopeful days ahead!

    Love & Eyewear,
    Caf

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