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Fear of the tiger

If you are walking in a forest where you know there is a tiger, it is likely that every crunch of a twig or breath of wind makes you think the tiger is about to leap out of the undergrowth at you.  The birds and bugs and even a friend approaching along a path could cause you to panic. There are also other things that could cause you harm, you might twist your ankle on a loose rock, be bitten by a snake or stung by an insect, or even be turned on by someone you thought was a friend and stabbed.  Whatever the hazards your focus will be hoping to avoid the tiger.

The drug recommended as the first line prescription by the NHS  for osteoporosis is a bisphosphonate called alendronic acid.  This has a list of side effects so long and so appalling that many people refuse to take the drug when it is prescribed after diagnosis.  Starting to take alendronic acid (which my phone autocorrected to ‘ale demonic’ the first time I wrote it) I’ve been waiting to see which of these side-effects I was going to fall prey to.  For those of you lucky enough not to have read the list, they include spontaneous fracture of your thigh bone while you aren’t doing anything, to death of the bone in your jaw.  It doesn’t help that these drugs are also not curative, but just reduce the incidence of fracture,  possibly increase bone density but not necessarily in any way which correlates with bone strength, and also that there is no easy way as a patient to know whether they are working.

I was quite surprised not to have the very common digestive issues associated with taking alendronic acid.  I have a chronic digestive issues, and the osteoporosis is probably due to the malabsorption I have struggled with all my life.  I did get a few muscle cramps, but not  very severe or long-lasting.

While taking these pills I had to have further surgery on my wrist as one of the screws had come loose in the metal pinning my wrist together.  Just after that I slipped while having a shower and broke my ribs and damaged my shoulder.  That was excruciating and awkward to live with, and as the ribs have recovered the damage to the shoulder is becoming more apparent.

I also have issues with sensitivity to metal – I no longer even wear a gold wedding ring as it makes my arm ache.  I only wear textile, plastic or glass jewellery.  So, I thought the dull nagging nausea in my forearm might be a reaction to the metal used to hold my wrist bones in place while they healed.  If it needed to be removed that would have to wait a year for the bone to be fully healed.

I put up with the forearm discomfort, the thumb ligament that still doesn’t work so I can’t grip, and the shoulder pain and lack of mobility which makes sleeping intermittent and means I cannot drive.  I also put up with a feeling of having quite severe jet lag and not being very sure where my feet were.  I felt disassociated all the time, as if I had to work harder to figure out what was happening.  I got car sick almost immediately when being driven anywhere. I also felt very tired, and kept wishing days only had twenty hours in, as by five in the evening I could hardly move. This general malaise didn’t seem to be vanishing, and I was considering what it would be like to feel like this the rest of my life.

I mentioned to the GP that I was considering giving up the alendronic acid.  I have modified my diet (more apple peel, more onion, more citrus peel, less coffee ) to improve bone health, I have bought an excellent weighted vest, I had a private Vitamin D blood test to ensure my levels were optimal.  I use a posture coach (Lumo Lift) which reminds me to keep my back straight and encourages me to walk more. I can’t use the weighted vest yet as my shoulder hurts too much, but the data does seem very clear that adding weight close to the torso increases the work and so bone density of the spine in a way that is safe.  I do carry one of the flexible weights is a runner’s waist- bag occasionally to add work to my general movements.

Unfortunately many exercises are divided into – if you don’t have spinal fractures do this, but don’t do them if you do have spinal fractures.  I couldn’t get anyone to do the necessary scans to tell my whether I already have wedge fractures, and the research shows that many people with spinal fractures don’t know they have them.  So, safety is a very important aspect in managing the exercise.  I also can’t get up and down to the floor to do the effective back extension exercise at the moment so all these planned programmes are waiting for my shoulder to improve.

The doctor had  a quick look at my T -scores and said I shouldn’t stop – she suggested I ask the National Osteoporosis Society for advice and check out alternative drugs.  My chiropractor said he thought the once weekly pill would be unlikely to lead to such a steady state of side effect, and could it be something else?  It hadn’t crossed my mind to check alternatives as the alendronic acid was the tiger that had been looming in my mind.

I had changed a number of things over the last few months.  I used a different face cleanser as I cannot wring out a washcloth and needed something easier to remove.  I’d taken more pain killers.  I’d started using a conditioner on my hair.  All minor things unlikely to make such a  difference in my health.  I had also started taking the prescribed Calcium and Vitamin D supplement, AdCal.  In the past I have sometimes had to stop taking a particular type do calcium as the pills gave me migraines, but I’d never had any other negative effects.  SInce I’ve taken a calcium supplement every day for over thirty years ( if I skipped a day I got muscle cramps), I had always been super careful when formulations changed.  However, I just took these pills without question, giving the remainder of my usual pills to my sister.

I stopped taking the calcium.  Within three days I felt a lot better.  By the end of the week my head felt clear and I had regained a sense of precision in where my feet were.  By day ten the nausea in my forearm had receded.

I bought a different  Calcium and Vitamin D supplement.  Four hours after taking one I started to feel fuzzy again.   I stopped.  I bought another variety I used to use…tried one of those this morning.  I don’t yet know if I’ll get the fuzzy feeling but I did get a mild allergic reaction to something in the pills as my ears went bright red and itchy half an hour after taking it. In an ideal world I’d have placebo calcium supplements and not know what I was taking…but for the moment I’m just hoping that a fortnight without supplements won’t be stripping my bones further.  The pill I took without even thinking about it turned out to be the problem – my friend, not the tiger.

I filled in a Yellow Card- the notification system for reporting side effects.  I couldn’t find any record of these side effects being noted before.  It would be interesting if some of the terror of bisphosphonates was due to an interaction with calcium supplements or the formulation of the supplement in itself.  GP appointment is tomorrow.

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Posture, posture, posture

yoga with Wii

The osteoporosis guides are full of exhortations to manage your posture to reduce your risk of fracture.  The aim is to prevent your back from curling forward (imagine cuddling a kitten/slouching on a sofa) as this increases the risk of spine fractures.  The spine is a series of stacked bones, and they get little fractures without people noticing, they crumble a little, form a wedge shape…and the wedge encourages curling forward, which increases the pressure and increases the fractures, and before you know it you are walking along unable to look at anything but the ground.

I’ve been teaching myself to put on my shoes with a straight back (don’t forget the neck!), but haven’t been able to figure out any way to cut my toenails without curving.  Maybe I’ll have to put up with lacquered toenails the rest of my life.  I got my nails cut by a nail salon person when I first broke my wrist as I could not do them myself, and the technician was so distressed at the idea of my just having my nails cut and no polish that I let her put polish on. Even though it was a nothing colour it was still weird, and I couldn’t open the very ancient pack of nail polish remover I had in the studio so it just wore off gradually over the next month.

A useful guide is to get a broomstick, place it along your spine, and learn to bend while keeping your vertebrae aligned with the pole.  At least it is a useful imaginary guide…it is actually really hard to tell what your back is doing in detail, and holding the pole top and bottom is difficult, especially with a fractured wrist.  Need a mirrored gym and a video camera and a physical therapist of my own.

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Ouch!  still haven’t figured out how to catch a sneeze ahead of it happening.  I’m supposed to support the small of my back or brace a hand against a thigh to reduce risk of fracture when sneezing…but my sneezes are unhelpful and they explode without enough warning.  Plus, of course, one should be grovelling for a tissue at the same time and not dropping whatever else is being carried and clenching (sorry) the pelvic floor muscles..

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I looked into devices to help one to develop and maintain a good posture.  Most of them are things you strap on and wear a measuring and notifying device in the small of your back.  The straps look awkward to manage and rather obvious, and most of the devices make an audible sound, so not good for discretion.  One US version allowed a sound or a vibration.

While I was looking at these I came across a device called Lumo Lift.  With the wonders of modern technology and delivery systems I found out about it the 23rd of December, and on the 24th I was presented with it as my (slightly early) christmas present by Bestbeloved.  It is very easy to use, very discrete, can be told what posture you are aiming at.  Two little taps in a new position tells the device that is what you are aiming at.  I sit straight at my desk on my Swopper chair but my back angle is slightly different from walking, and you can tell it to ‘coach’ you, where the thing buzzes whenever you go out of the desired posture, or just to monitor.  In the monitoring mode the thing gives five short buzzes if you have been out of the target posture for a length of time you can set for yourself.

An extra benefit is that it also tells you how many steps you have done.  I got an email this morning congratulating me on having walked the equivalent distance to swimming the English Channel over the past nine days.  It synchronises with your smart phone, which records the data.

The whole thing is tiny, discrete, and just clips onto your shirt or bra strap with a little magnet.  So far I am impressed with it as a way to remind me all the time to think about the shape of my back.  It measures what it calls ‘slouchy’ posture, and it is based on the angle of the device, so if my back was very straight but at an angle to the floor – as in the straight back bend I’m supposed to be learning, it would give a warning buzz.  What would be very useful would be to have two, one on the lower back and one on the upper, and for it to give a warning if the distance between these two reduced, because that would mean that the spine was curling.  I’ll write to the company and see if there is any way to do this.

I’ve already written to the company to see if the sensitivity can be altered.  While I am sitting, actively, on my lovely red Swopper stool, I register steps when I bounce…ok, I don’t bounce that vigorously a lot, but it is fun to do now and then.  The stool has made a considerable difference to my neck pain as well as keeping me moving the whole time I am at my desk, so I am very pleased with it. Fortunately I can still use the foot control of my sewing machine while on the stool, so for those of you that are envisaging a very wobbly unstable thing, it isn’t like that.  Stable with movement, like those animals on springs in children’s playgrounds.

We also retrieved the ancient Nintendo Wii from the attic and set it up in the living room.  Reducing the risk of falls is a big thing with osteoporosis, as even a hardly noticeable fall (even turning over in bed!) can lead to fractured bones.  I’ve been having fun on the balance games.  It is difficult to be sure what activities are safe to do- I’d like to do the hula hooping as it gets me out of breath and makes me laugh, but, while my back in straight the hip rotation must alter the angles of the vertebrae…until I can get a definitive answer I’ve banned that from my activities.   I’m surprised, with the numbers of people with osteoporosis and the use of the Wii with the elderly to reduce falls that I couldn’t get a list of which activities to avoid and modifications on others.  I’ll keep hunting.  Plenty of research papers available on the impact on balance and whether these balance activities equate to the tests used in other research, but no basic guide.  I wrote to the National Osteoporosis Society about one of the exercises they recommend that everyone else says not to do, but just got a (Facebook) message back saying I should phone.  I like the use of Facebook for generalisable advice as lots of people can learn from queries.

Enough sitting…January is the time for group challenges on my fused glass Facebook groups, so I’m off to do a Sgraffito drawing a day and a painting a day.  Started these to get myself out of the frit frolics I’ve been doing the last few months when I couldn’t handle sheet glass.  Still tricky, but getting my dexterity and strength back…frayed thumb tendon not fully recovered so opening jars still difficult, but making progress.

 

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