Working on Walking

I saw my Osteopath yesterday (change from physio) because I was getting some sciatic symptoms on the left leg. I imagined this was a partial result of the new hip exercises and work given to me by my physio, but it was going to be much easier and quicker for me to see the osteo, who is lovely, like my physio.

The osteo noticed similar things about my hips to the physio and said that periformis was massively overworking and that my glut max and other gluteals were doing very little. He watched me performing some developes and other movements and then worked on my gluteals and some of the discs in my spine which had become irritated and in some pain - notably L2/3.

After this I was given two new exercises which complement and take further the exercises I was recently given by my physio. One involves pointing my foot around the face of the clock so for right leg pointing at 1pm, 3pm 5pm etc and left leg at 11, 9, 8 etc. I have to do the left leg twice over because it is not as good as the right one. The second exercise involves forward lunges ensuring I rotate my trunk and use my hips and that my knees are pointing medially with my head straight forward. Again I have to do more reps with the left leg in extension as it is not tracking as naturally or correctly as the right leg.

Following doing all my physio and osteo exercises I went on a walk and was really focusing on keeping my left leg tracking medially, rotating in my trunk and swinging my arms and then using my hips and toeing off. It was a lot to think about - it is amazing just how complex walking is as a movement pattern. By the end of the walk (about an hour) my TFL and adductors had really had enough, but I could feel my trunk working properly and some hip hitching and rotation movement. I then did some adductor stretches and then was really annoyed at how tight my hamstrings felt!

I am now quite fatigued, but that was a lot of new movement patterning. Think my spine, adductors and hips will be rather sore - just more training pain!

It is interesting seeing two different therapists of two different disciplines, but even though they don't know each other they seem to complement each other very well. I would love some Bowen too at some point!

Physio Update - Right hip problem

For sometime now I have had problems with my right leg when it becomes the working/gesturing leg (in ballet), rather than the supporting leg. Flexion in external rotation has been difficult so I have been hitching my right hip in order to get higher extensions. The left leg, by contrast has become a much better working leg as it was being so overused as a supporting leg.

My physio could see the imbalance and said that it looked like my gluteals were weak which was contributing to the problem. This had been pointed out be a Pilates teacher a week ago! He did some manual therapy on my right hip and gluteals before giving me an exercise that would involve working on my medial hip rotation (which is very restricted) and would also ensure that adductors were being used as ITB and TFL have been too dominant on the right. He also asked me to do some work in kneeling.

I did my exercises before going for a long walk today and my hips are now sore internally, but I felt very upright and poised; pelvic floor working very well and thoracic spine more engaged following work in arms and upper body (doing a version of 'the plank' modified and using the wall).

This is the first physio appointment I have had for four months, and shows how well my musculo-skeletal system is working (at leasst). Pity about other systems.....!

My new book on Ehlers-Danlos (Type III) Hypermobility Syndrome

My new book comes out in mid-March - for further details - see below:
http://www.singingdragon.com/catalogue/9781848190801

Movement Disorder - Neuro Update

I had a hospital appointment with the lovely Dr E and he has suggested that I need to stop having any manual therapy for the moment and so physio is presently suspended until further notice. I wasn't very happy about a total ban on all manual therapies as my upper back and neck need attention, so will continue having Bowen Therapy which is less risky for the area, it seems, than physio. Dr E has said he will send me to a Neuro-Physio if my movement disorder persists at its present level. We have agreed I am in a flare-up situation, but that it should settle, as it has been before. He will certainly see me again sooner if there is a problem, or send me to neuro-physio. I can continue taking medications, as appropriate.

A few days prior to seeing Dr E I did some Mind Body Bowen work on myself which gave me another beautiful emotional release. Everytime I do this I get just a little bit better.

Ten days after my last physio appointment and things have now really calmed down and there are no spasms, but just muscular tightness and tension. Bowen required and lots of sleep!

Tektonic Spasms and Movement Disorder

Yesterday, disaster struck after work on my neck, approx C3-7, TMJ and trapezius. It is very definitely not my physiotherapist's fault. These areas of my body almost seem like a massive danger zone and should be surrounded by red warning triangles. What happened next has happened in the past (see 'youtube' link below) - but were stronger than I have ever had them and in waves and pulsing like movements, systemically. When I left physiotherapy I was standing at different bus stops (as I had to change buses) and was standing and my body was literally going into these tektonic spasms - like the footage below only much worse! It was unbelievable and quite scary and hasn't happened in "free standing" not like attempting an exercise (as below). I got home and had to take some medication and basically rest. I ended up in bed at 6pm too tired to do anymore, but then woke again about 10.30pm for about 2 hours. I then was "out for the count" again.

Today I am still in massive fatigue. Is a struggle concentrating to type. I have had lots of painkillers, two baths, more sleep and have now got someone in to help me and do some cleaning and give me some support. As it snowing outside, I have no strong desires to go anywhere, will take today as a duvet day and an opportunity to catch up on some missed TV programmes.

Although this is to do with my pain and changes to my nervous system in general, my physio and I have wondered about other "feed-in" factors such as mood, emotion. I have thought about this over the past day and do not think that either are involved as also recall having more "spurting" or "pulsing" movements when having Bowen. The movements do not hurt me at all, but there often feels like a "charge" - perhaps like electricity, with a hum. I am aware that people with epilepsy and those with migraines often have signs and symptoms before they have an attack, and this feels similar. There are more blog entries on this, if you have the time to go further back. Meanwhile, below are the promised "Youtube" videos from 2011. 

You Tube Links of 'Movement Disorder'
 http://www.youtube.com/watch?v=7KRCw4tyuLo
http://www.youtube.com/watch?v=JZblJySdXLE
http://www.youtube.com/watch?v=MuyJvWCIwDM 
http://www.youtube.com/watch?v=L8EoXU-SW0M

Physio Review and neck extension work

I had a physio appointment today. Things have calmed down a great deal over the last two weeks with deep-core muscles really kicking back in making my life much easier. I think the swimming and Biodanza helped with that. Despite a day of the most awful and screaming arm pain and two days of fatigue, things are better, but highlighting problems in my thoracic spine (getting very hunch-backed) and also arm-pain.

M did some work into my neck. In occiput - and extension in that area, there is no problem, but around C4-7 in neck extension things really kicked off huge muscle spasms. He did work on scalenes, ribs, traps, and has requested me to spend some time on the overball working on my neck extension, imaging if need be to start with if muscle spasms and twitching are rife. This area and thoracic are the last bastion now of my treatment - now almost 5 years later!!!

Biodanza! -

I started a new dance class called "Biodanza." It was absolutely wonderful. I felt joyful, energised and laughed so much during the class. I also realised how cardiovascularly unfit I have become lately. The form of dance is based on Jungian symbolism, creative, sensual, and bio-units -e.g. atoms in movement and awareness of space and what total freedom of movement.

The sessions involve working in a group as well as in pairs, small groups and individually. We started in a circle holding hands and walked around and this sped up. We then did some hip "wiggling" work to another piece oc music and shoulders to another piece of music. We then followed Gita, our teacher as she led us through a sequence, which really got us moving, this was individually. Then we did more work in smaller groups and then had to move about changing groups very fast - this was quite tiring, but fun. After this the class was split into men and women, with men dancing first on their own, and in their own way to the song, 'What a Feeling.' then the women had a go. I was doing a mixture of ballet-type moves whilst just doing any types of running, jumping, and turning I fancied. When we had done this we gathered very closely together whilst we were all breathing to recover.

The second half of the class was much slower and involved more tactile and sensual work which I very much enjoyed. One thing involved people in groups of four layering their hands, layer upon layer. We also did some from the heart work, and more circle work with our eyes shut and finger tips connecting. We then had the opportunity and priviledge to walk around the room, make eye contact with someone and give them a hug. This felt very nurturing and safe. The class ended with the group in a circle and walking about which became more and more energised.

I had wondered that I might really find the class too much for my calves, but they were fine. My hips and lumbar spine felt a bit sore the next day, but that was a very minor pay-off for a wonderful class full of laughter and real freedom and creativity of movement. I am looking forward to the next class, but feel that I am now ebbing away from the constraints of ballet and technique to a more liberating form of movement.

Images of Kinesio-taping

Me taped - lying in child's pose (position that tape was applied)

Physio Update on Deep Core Muscles, swimming and Kinesio Tape

Kinesiotape
It is one week since my last entry and it seems that applying virtually no tension to the kinesio-tape has meant that I had no skin reaction to it at all and the only reason I had to remove it five days later was because of the amount of time I had spent in the water - either in the swimming pool or in the bath and it became soggy!
Yesterday M taped me again in the same place and applied about 10% more pressure and I am already itching 24 hours later, so I suspect this tape will be very short-lived. I might be lucky enough to retain it for another 24 hours, but think that will be it. There is no point in leaving it and having a huge reaction to it.

Swimming
The exercises that M gave me to do in the hydrotherapy pool I am fortunate enough to live ten minutes away from have been incredibly helpful, far more helpful that the 30-40 minute Pilates regime I had which had done nothing at all. In the water I had support and was doing the following exercises which I later transferred to doing on a very regular basis throughout the day during the week. I managed to go swimming twice in the week. The hour long rehabilitation session at my pool involves half an hour of no bubbles when I do widths of (predominately breast stroke with dumb-bell floats, so I can do the arm action as well) with a little bit of crawl legs, which are difficult and painful for me. The rest of the session when the bubble jets in the pool interfere with withs involve:

• Plies in parallel holding the pool edge - outbreath and in plie, abdominal relaxed and then engage everything on the ascent.
• Straight-leg stretches, pulling in abs when returning to neutral
• Balances with eyes shut in the water to gain a sense of bringing my weight forwards and improving my altered proprioception from spine in huge extension (on standing) to a more correct posture.
• Lunges - forwards, backwards and in a neutral ballet second position across the pool and back
• Walking forwards and backwards in the water
• High knee raises

Pain and Fatigue
It became apparent that there was both pain and restriction in flexion in my right hip which is the most mobile, probably owing to the surrounding soft-tissue having to work hard to control movement whilst my abdominals are working insufficiently.

I had one pain-free day in the week and felt great and clear-headed and managed some ballet. The rest of the days involved periods of extreme fatigue in the morning and pain in the trunk and shoulders, and sacral area, with some global "needle" like points of pain. I was also having nights with muscular twitches and spasms.

Physio Treatment
M worked on my right hip and then on my trunk in order to eliminate the terrible spasm and needle like pains that persist throughout it.  When M was working on back I was twitching and spine was 'wiggling' and reacting all over the place. There were also some temperature changes - not surprising as we were working on the sympathetic/parasympathetic nervous system chain. At the end of the treatment, M re-taped me and asked me to be doing muscles that involved rotating and bending my thoracic spine (particularly in the water) and to re-start my psoas exercise. He also asked me to continue using my new physio ball.

Post Treatment
I felt much more  on top of my right hip and managed to have some feeling of deep abdominal connection - say, 30% on my walk back to the station. I then had a very poor night sleep with thoracic spine very sore.

Next treatment: one week.

Deep Core Failure and Back Pain and Spasm

My 'Deep Back Line (Myers) has been over-working for the past 6-8 weeks and has been in spasm on several occasions. I have had sciatica as well and have had some Osteopathy sessions, but the pain has returned and Bowen has held the fort, but today I went back to my physio for a crisis review, as my pain was terrible and was getting beyond a state of functioning. This has been the case over the last few weeks in terms of a decline in energy, an increase in fatigue and a decline in mood and becoming socially isolated because I have no desire to do anything. This has (largely) stemmed from deep-core muscular failure which my physio said might have also been triggered by anything - including a psychological event/incident. This, I can quite possibly relate to a very difficult time in psychotherapy. The result now is that despite a week of very intensive Pilates from me and ongoing attempts to kick-start my deep abdominal muscle have failed. My tummy is sagging and I have gained some weight and I constantly want to be in a forward flexion position. This is a typical movement pattern for me and one in the past we have tried to get me out of - but it is obviously bought out when I am threatened. My balance on both feet with my eyes closed bore this out - I had no sense of control and was tipping backwards. When I stood further forward, which would be the correct position, it felt like I was falling off a cliff! This is the trouble with HMS and problems with proprioception, as well as the deep-core muscular failure.

My physio did a lot of work on my back and relased off many incredible points of pain. He then taped my back up and he has asked me to go and get a swiss ball to sit on as much as possible and to go swimming - but to do specific exercises  - anything that might get the deep-core abdominals to fire. Until this happens any further progress is entirely hampered. I really hate being in this state so much, and spending time having to catch up again before I can make progress. I am having more physio next week. I said to my physio that a whole 3 months without any treatment was definitely too long. In all honesty, even when I am well, I still require treatment at least every 6-8 weeks. I think this will be how it is forever and ongoing.

Referral to Professor Aziz.... and Sciatica

Last week I had to see an Osteopath - first time I had tried Osteopathy in over 12 years. I had to see someone as was trying to avoid physio for a while.  My guts had been a terrible state so had primarily blamed them for my increasing back pain, the spasm in my gluteals and complete restriction in lateral flexion. Then I started to get pain on walking which flashed down my hamstrings. I was in a bit of denial about this - surely I didn't have sciatica? However the 'Forward Slump Test' revealed a shooting pain down my left leg. The osteopath did a lot of work on my gluteals and some in my hip. He said I needed to work on medial rotation (I had heard that one before!!) as the left hip is so restricted, medially. He then said he would review me a week later. He knew my history was complex and that I was having a lot of difficulties with my bowels, and had previous history of endometriosis etc.

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The 'sciatic' pain seemed to remain and then I did a Bowen course last weekend, having had no Bowen for ages. We also learned a 'sciatic specific' procedure and that seemed to eliminate my sciatica, although my back and gluteals remained in spasm and my guts in a bad way.

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On Tuesday I saw my Colorectal surgeon who has decided to refer me to Prof Aziz, a leading Gastro expert in patients with EDSIII. I reported to being in so much pain had had to resort to strong pain medications and wasn't far off a visit to A&E. Mr H will do some interim surgery involving botox again to help with the muscles that have become in deep spasm in my rectal area (which is making my back pain worse), if there is too long a wait for Prof Aziz's thoughts. All I know is I am an increasingly bad way and now needing 3+ laxatives per night and still unable to completely empty my bowels. Mr H begun mentioning frightening words like 'Stoma' to me. There is no way I can end up with a bag..... is there??? I now have to wait to see Prof Aziz.

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I saw the osteopath again on Friday. He was pleased the sciatica had gone away but continued to work on my "jammmed" lateral spine and sacral/gluteal area. He has given me further exercises for medial hip rotation. He taped my back up at my request at the end of the session. Again, it transpires my deep frontal core abdominal muscles are not working - so I am well and truly stuffed until they do.
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My guts are in a terrible state and I feel about 6 months pregnant. I went on a long walk today and noticed that my sciatic symptoms have returned, although they are minor. I really hate this condition - it is so miserable and wretched. I am so tired of making so much effort - e.g exercise, diet change etc for nothing to get a lot better. It is so hard. I have had enough of all this pain. I am thinking of colonic irrigation!!!

POTS Testing - Day 2

I had left the Neurology Hospital with a 24-hour BP/HR monitor with a diary and instructions about how to use the monitor and the sorts of things to record in my diary. This started with me recording my BP 5 minutes before eating, then ten minutes after to see how food effects my BP. I then had a very brisk walk to work so these things were all recorded.

I did not sleep well that night. Aside from the fact I had a nasty cold the BP monitor was going off every hour, so was waking me up hourly as well!

In the morning I foolishly decided to run a few errands in the notoriously busy Oxford Street before going back to hospital. This was definitely a mistake - especially when feeling unwell.

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I arrived into the lovely calm of the day ward and shown to another nice green chair in a room shared with others having intravenous medications - mainly for MS. I was then taken back to the Autonomic Unit for my final testing situation - the 'feeding' test.

I told my scientist of the day that I was not well, but we agreed I could proceed with the test, and I requested to be given a soya-milk complan drink as I am presently on a dairy-free diet.

The test started with a few base measurements starting on the tilt-table, in a horizontal position, after this I was tipped again to 60 degrees and left there for ten minutes. I did feel some fatigue and nausea, but not much else. My scientist then bought me back to horizontal and then fed me two plastic cups worth of the liquid meal I had to consume, whilst lying flat, and I had to drink the meal through a straw. It was strange doing this, but I managed to swallow the drink, which tasted quite pleasant. I then had to wait 45 minutes in order for the drink to be digested, but had to remain on the tilt table, horizontally. I was covered with a blanket and said I would probably fall asleep - although I was asked to 'preferably' remain awake to avoid my BP dropping, as would be the case if I slept.

Sleep, it seemed, did not feature in the agenda, particularly with a BP monitor going off every 5 minutes. My HR rocketed and I started to have palpitations. This went on, past the repeat of the ten minute tilt-test and actually went on for several hours after the test. This was not something I expected to happen, neither did my scientist. Although people sometimes do have palpitations (as per having POTS) they don't normally last too long. I had to be taken back to the ward and further monitored for a few more hours. My 'resting' heart rate ranged between 80-110 beats. As a precaution I was also given an ECG, but this was normal. I was also given more food in order to try and stabilise me. I did eventually feel better and got home at about 8pm. I should imagine the fact I had a bad cold and chest would have possibly had an effect on my tests and their outcome. However, I will definitely say that this 'Feeding Test' was no where near as bad as I had expected, even despite the outcome of my testing - which was unusual. Nobody should worry about this test or indeed any other POTS testing.

I get the results of my tests at the end of the month.

Everyone was absolutely lovely at hospital, and nobody should worry about having POTS testing - although some aspects of the testing are slightly unpleasant (as in my Day one experience) nothing lasts too long. You will be fine, and they will really look after you even if something strange does happen! At least it is not like being at A&E where nobody believes your symptoms or thinks you are making it up!

POTS Testing - Day 1

I finally had my long-awaited POTS assessment at the National Neurological Hospital in Queen's Square, London. I had been put on the list two years ago, but deferred my original assessment appointment because I was so worried about having the Tilt Table test at the time - although in fact nothing was done other than a blood pressure and symptom history - back in February. I had deferred because my physio and I had been concerned about the testing making my symptoms worse. Then would have been the time for the tests! As a result I feel that my symptoms are much less severe two years later, so am not sure how much benefit will be gained from the tests - other than my ability to contribute to their research and for me to document the experience now.
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I woke yesterday morning with the symptoms of a cold and had a sore throat and cough all the previous night, so was not feeling well. I reported this to the nurse who met me on the ward. It was strange being admitted to a ward where one is a day-patient. Nonetheless upon arrival my blood pressure was taken, and an MRSA swab as well as the usual clerical details -e.g. next of kin, allergies, wrist-band. I was then taken to the Autonomic Unit and entered a small laboratory where I spend the next four hours.

My 'scientist' was lovely and explained everything to me as it unfolded. He begun with taking some notes about my symptoms and when the occurred and anything that made them worse. I was then asked to lie on the table (to be come the tilt table) and was hooked up to a blood pressure machine around my right arm and some base-line readings were taken. Heart monitor pads were added to my chest and a heart monitor put around my middle left finger, which created a pulsing sensation (to the rhythm of my own heart). I had to have my hands warmed up as they were so cold - particularly to the left as is often the case. I was then left for a good ten minutes whilst several baseline readings of my Blood Pressure (BP) were taken whilst I was horizontal. Then came the first of the testings....

I was asked to squeeze something as hard as possible and hold it there for several minutes to create a tornique. It was quite painful, and I just about managed to do it. All the while BP/HR readings were taken.

Next I was asked to do some mental arithmetic. I found this quite stressful at the start of the test, but got into it OK and then it was made even harder. Doubtless my HR/BP readings will bear out this stress.

Aftter this I was asked to do some deep-breathing whilst readings were taken. This was fine. 

The next test involved having two icepacks put onto my right hand, one under it and one on top of it. This was most unpleasant, and again survived the experience.

Once I had recovered from this test I had to do a lot of shallow breathing - or hyperventilating. This did make me a bit dizzy/lightheaded.

After this I had to go to the bathroom before a few more baseline HR/BP readings were done, and then I was tilted abruptly (though not violently) to 60 degrees. I then had to spend a very long time in this position. I was taken well past the ten minutes - although I was having symptoms of HR and temperature change as well as feeling sick. I then had a cannula inserted and bloods were taken and my response to the stress measured. After I really could tolerate no more and was getting to stage of hypervenilation, I called it a day and requested the test to end (I think he wanted me to hang on a bit longer, but my back was killing me). I was then tipped back to horizontal, though this did not feel horizontal anymore - felt strange. Once a few more readings were done, whilst in horizontal, I was asked to stand still. A few minutes into the test Blood was taken from the back of my hand, rather than using a cannula, which I found strange, but it was another stressor designed to see how I would cope - which I did. After this came the exercise test!

The exercise test involved me lying supine on a bed where I was hooked up to another BP monitor and a few baseline readings were taken. I was then positioned into an exercise bike, whilst lying horizontal, which is hard to imagine, but was possible. I enjoyed this test the most of all. I had to cycle keeping the bike at a certain pace. The first level was easy, then pressure was increased to make the resistance harder and I had to cycle for a bit longer and then third level was harder still. I had no problems at all with this test and seemed to recover quickly.

The final part of the morning involved me being fitted with the portable BP/HR monitor and being given a diary to complete with various activities for the following 24 hours. I was told how to remove the monitor and what sorts of things to be doing in the different tests - e.g. some sitting, lying, walking, assessing myself before and after food. After this I was able to go to the ward and have my lunch before running off to work - and did a brisk walk there. It was very embarrassing having the machine on me at work as it was quite noisy and sounded like flatulance! Everyone was laughing. By this point in the afternoon, I was feeling increasingly poorly and was very definitely coming down with a cold.

I didn't get home from work until just after 8pm and did some more readings in different positions. Bed time was another issue altogether...!

The end and The Beginning

I had my final physiotherapy session today. M and I did a lot of talking - actually about 90 minutes of talking with a little bit  of physio and much interesting discussion. He agreed with my decision to stop physio for the time-being. Upon reflection, I had now been in physio for 4.5 years and it now feels time to explore other options and let things process for a while. It felt empowering for me to be the one in control over this decision and to stop treatment on my terms and in my way. I am sure I will have more in due course, but not (I foresee) for several months at least. I hope. M agreed with my decision and was supportive about it. He said he often suggests his long-term patients take a break. It is good for both therapist and patient.

It feels a bit strange knowing that for now, "that's it" but I have made the decision and it was not one I took lightly. There are definitely new things coming into my life and new healing and treatment approaches. I am looking forward to the future and all that it brings and although this blog is now at an end, I feel I am also (personally) on a new journey. I would like to thank all my followers - and will keep you appraised of other blogs - or you can find them yourself. Where one door closes, another one opens... said someone wise.

The end of an Era, this blog and Physiotherapy!

I have been giving this some thought for a week or two, but feel that it is now the right time to stop having regular physiotherapy sessions save for a brand new acute injury (where Bowen cannot help). I honestly feel that I have come as far as I am ever going to go with physiotherapy and that for the most part I am as rehabilitated as I am ever realistically likely to be. I have a bank of exercises and a toolkit of self-help strategies including medications,  tape, Bowen, relaxation, meditation etc. I usually know how to triage most situations. I don't really think I need any further treatment. Although I am still prone to the strange episodes which effect my left-side and head, it is clear that physiotherapy is not able to help with these. My TMJ may not be perfect, but the orthodontic appliance helps and also Bowen is good for this. I also have some trigger points I can use to help with pain/tension.

I am not sure how my physio will feel about this, but think he will agree in many ways. I know where he is should I need something, but I no longer consider I require "treatment" - I can now manage most of my chronic complaints - I would return if something "new" occurred or for a brand new acute/traumatic incident only. Treatment begun in April 2008 and had taken 4.5 years in order for me to reach this point. It feels the right thing to do, it is also my decision to do this which feels very powerful. I am also terminating counselling sessions with my present therapist. There have been a lot of endings for me in 2012, but also I feel very positive and excited about the future with  new openings, places, work and people. I now have the right support and strength to go forward, but this has been a very long and complicated journey. I have many people to thank who have helped me along the way, but it is now time to cut these cords so I can fly, so this might be the penultimate entry in this blog. I have really enjoyed writing it, but it is now time to move on with my life and onto a new blog and a new chapter. I would like to thank all my supporters throughout the time of this journey and blog. I wish those who are still going through their own rehabilitation ongoing support and love. I will keep the blog open and perhaps pop back occasionally, and to let you know about the new book which will be published in early 2013. Goodbye.

A Foreign Feeling...... Relaxation!

Over the past weeks I have felt... shattered. I thought it was fatigue. After last weekend's fantastic HMSA Residential Weekend, I am sure it was pure exhaustion, and then I finally realised something else. I had an epiphany yesterday when I felt so laid back I was almost fast asleep at 3pm in the afternoon.... at work. I realised that this wasn't just being tired anymore (although, tired I very definitely still am), but relaxed. I have not experienced "being relaxed" for so long I had long since forgotten what that sensation might be like. I have been running on adrenaline for months and months and now I think that the adrenaline has been depleted and therefore so am I, so the only thing I can now do is rest. It is hard not pushing myself to exercise, even harder when I have gained a bit of weight, but I realise I really have to rest because I cannot push myself any further - there is no adrenaline to do it and I need to give in, slow down, rest and relax. So I am. Enjoying myself in the sun, napping, seeing friends, but also drinking copious quantities of coffee are no longer having any impact - that is how I know I am completely adrenal depleted, and have to relax and rest.

Fatigue - The Big Dipper

There should be a new fairground ride called "The Isobel" because it would be more full of dips than the big dipper. It would be the equivalent of going up and down mountains. There would be enough excitement to make you sick and no time to recover before the ride dropped you off.....to the deepest point of the ocean. Get it? That is my life.

I am beginning to realise that either I am adrenal junkie or I live in a perpetually adrenaline-fuelled state of existence and I don't even need copious amounts of caffeine or illegal substances to do it. I am wide-awake and have been since 2.30am. The problem is that I don't yet know what I normal state of relaxation is so that all I can do when I run out of adrenaline is crash, but that is just burn-out and not a state of rest or real recovery.

My physio and I had a long chat about my behaviour which is continuing to fuel these states of hyper-adrenaline - anger - and a perfectionist streak. He didn't say that, but I know that is a distructive aspect of my personality which my previous physio also recognised. My next job in physio is to start to look at this. M has actually technically banned me from exercise, but am about to defy it because my body is so wired and cannot cope with that feeling either. Today is a tough one because it is the last day of writing my book before it goes to the publishers and there a lot of strong feelings associated with this - including a big sense of loss. I am well prepared for the fact that I will be dropping off the mountain on Friday. I am aware this will happen and all I can do is to prepare for the inevitable crash. Once the book has gone it will be time to start to look more critically at what I can do to change my behaviour as I realise that my blog is full of fatigue driven episodes and not all of them are EDS related!

Anyone for "The Isobel" ride...? It will cost you.

Songs for Surviving Physiotherapy

Songs for Surviving Physiotherapy  - Isobel's List

·         Don’t Give up- by Peter Gabriel

·         I will survive – Gloria Gaynor

·         Always look on the bright side of life – Monty Python

·         Self Control – Laura Branigan

·         What have I done to deserve this? – Pet Shop Boys

·         Strength of a woman – Shaggy

·         The Weakness in me – Keisha White

·         Give me strength – Eric Clapton

·         Heads, shoulders, knees and toes – no composer found!

·         The only way is up – Yazz and the Plastic Population

·         Relax (don’t do it) – Frankie Goes to Hollywood

·         Is it my body? -  Emilie Autumn

·         Hypermobile – Hanoi Rocks (this really is a song!!)

Good Times!

The quality of my life has really improved.  A major hurdle has been overcome and another one will be overcome by the end of this month. Now I am starting to sound like an astrologer.... I am the happiest I have been for almost nine months. I feel a huge sense of relief and have started to find joy in life again. Several people have commented that I sound like my old self again. It feels good to have reclaimed that person.

This weekend although I had some editing work to do I have otherwise met up with a friend, gone for walk and a jog, done some ballet, read a book in the garden, lazed around in the sun, played endless music and had a lazy and restful weekend. I cannot recall the last time I felt this relaxed, but it hasn't been for months. The sunshine helped - although it had become a bit too hot and humid.

I am beginning to realise where I want my life to go and that I have come off the fighting-line in physiological needs with my EDSIII and now moving up a notch to a newer and higher quality of life. I can see all sorts of doors opening and new opportunities coming my way. Life feels good and it is good to be me.

Confused bladder!

I saw the Urologist today. Despite surgery and other investigations including trial of Vesicare tablets (for over-active bladder, which didn't work for me) it seems we might have an answer for these strange episodes I have of needing to pass urine constantly (15 times in 90 minutes), late evening, and also why I need to pass urine at night. It might be that my body is "physiologically confused"(!) and that my bladder is much more active later in the day than it should be. In order to prove this test I need to measure precisely what I intake and output over a three day time period. If the information shows that I output much later in the day (which is what we predict) then it will confirm this "physiological confusion". I am not sure what the diagnosis is, or if there is a name for the condition, but my Urologist did say there would be an appropriate medication to take which should solve the problem. So I have put up with this for over 30 years and might finally have a real reason for it. Apparently my bladder capacity is really good, so the Urologist also thought that I am also possibly retaining urine, to an extent. This is something that is related to hyperlaxity of tissues. I am seeing Mr H in a month's time when hopefully there will be an answer to this problem! Mr H did also mention neurological irritation when it came to these odd episodes of continuous need for the bathroom, but fortunately I only get them a few times a month. It will be so blissful if this problem is resolved. Physio and Bowen have both helped in different ways, but only in a temporary capacity.

More hospital tomorrow with an TMJ MRI and then Neurology appt for my muscle spasms, which are still around....

In control..... Going up a level

I have just been informed that I don't have physio until 20th (one week later than expected) and I remain calm and in control. Last Friday's jogging problems (left knee, medial pain) are now last week's problems. I took care of the situation myself I self-treated using Bowen to rebalance my pelvis and knee. I went back to walking immediately and then managed a fatigue by just simply sleeping for the afternoon. I was able to do some ballet and then life went on. I have followed my own self-management plan and know that I am confident in managing life's little situations as they arise and present themselves. Having drunk a lot of alcohol in the week, I knew it wasn't suiting me, so I stopped and had a night off, even though I was with others who were still drinking. I have felt good and in complete control of my body (and mind). I have made huge progress in recognising all these things including my acceptance and management of pain.

My new physio exercises are causing me some training pain, but I am understanding that this is now essential so that the last pieces of the jigsaw can be puzzled. I am enjoying being in my body and watching this dialogue unfolding as the spiralling exercises work to strengthen and loosen the area of inhibition in my Thoracic Spine. There has never been any gain without pain throughout my entire story. The more I understand and accept what is happening, the more I am able to tolerate the situation without the level of upset that would have been the case over a year ago. This is a huge step forwards.

Today I did ballet in the centre (no barre work) and danced with more precision and strength and control than I have ever done before. Although this is only from home and not in a studio session, I know that my hard work will transfer back to class, and I look forward to doing this again very soon.

I believe I am now going up a notch in my own health and well-being (musculoskeletally). It has taken over four years of enormous hard work and dedication from those involved. I cannot jog for another few days as I am waiting for my new trainers to arrive, but a bit of medial knee pain won't put me off - if it re-appears I will triage it again until other help arrives, but I will not get upset about it or let it spoil my day. I will simply wait and do other forms of exercise until I can jog again. I am also looking forward to trying other new sports again as my confidence increases. I am now in a better space again than I was, and that feels good. Happy Days, (as my physio might say :)).

Spiralling and calf work

I had an interesting physio session today. M decided to work down my right lower limb and then up the left lower limb. He is working on various spiralling patterning in me. All this lower limb work involved a lot of calf work and I coped really well and in fact it was the first time for me that it was finally hardly an issue. I got through any difficulties with use of breath for relaxation. The fact that M had explained to me some weeks ago that my sensitisation of (an overly) sensitised central nervous system aka chronic pain would bottle neck in my calves (due to previous traumas) has really helped me to understand when and why they become 'wired.' However it is a huge breakthrough that I am now allowing M to work on them properly without throwing the kind of fit I would have done not so long ago. For me understanding things is the key to breaking through these kind of issues. A lot of work has been done on the whole calf issue over the past few years. Latest measurement of calves now leave only 2cm between right (38cm) and left (40cm) legs. Our hope is to reduce this gap by a further 1cm, which would be normal.

M did some work into right obliques, psoas/diaphragm and then set about giving me two exercises. One is being on all fours and simply extending the lower limbs (whilst remaining weight-bearing). The other exercise involves putting one arm out to second position (whilst kneeling on all four) and then me following the arm with my head/neck, thus involving upper thoracic and this new area of sensation we are awakening in upper thoracic spine. It is an extension of the first spiralling exercise given the other week. I then repeat this to the other side. M also asked me to re-start my psoas exercise in addition to my other staple core exercises.

I am feeling really positive at this stage in the treatment and can now see some kind of end stage when all remaining faulty patterns have been removed and final areas of rehabilitation (including TMJ) take place. Then I will just need physio for maintenance only. I am continuing with all cardiorespiratory work, carefully pacing up activity. I have come a very long way in my musculoskeletal rehabilitation over the past 4 years.

Muscle stiffness and "spasm" and strength

I thought that I would share some of the thoughts that have been going around my head lately in terms of contemplating why I get this horrible locking muscle stiffness. One reason might be that I am not doing enough stretching after exercise - ballet or jogging. Another reason might be that as my muscles are regaining strength, they are tightening up in response to this, but it is not a feeling like DOMS. It is hard to reduce this muscle spasm and stiffness which tends to be at localised spots such as gluteals and abdominals. I have some tips for managing this. I have been doing Bowen lumbar spine moves to kick start things before then having a warm bath to allow my muscles to "relax." This is key as first thing in the morning is worst. I am taking magnesium as a supplement for nerve/muscle function. If the spasm is very severe I will take an NSAID and then possibly a small dose of Diazepam. Stretching is also an important strategy in reducing the spasm and getting moving. I am then also having manual therapy (usually physio) to reduce this - but it is a vicious cycle and it is difficult to break - I am in a bad spell of it, but have just recognised some major strength gains, so will look at this as the main reason and take heart (or muscle) and go and have a good stretch to reward my efforts.

Hello T8! - Improved strength and control

I have been dancing from home rather than attending classes for various reasons, and have been doing a great deal of experimentation, including changing the order of the traditional classical ballet barre and in doing more proprioceptive work (eyes closed and work for balance). Things are really beginning to pay off. I decided to do my usual barre work in the centre (except for Plies and ronds de jambe) and noticed I am now using both legs much more equally and that there is much greater control and sense of balance. Height might have reduced in some extension work, but there is a compensatory strength and control which is much more important, and flexibility is there, but I can't cheat in the centre!

Amongst the relevations of improved strength and control I noticed a new sensation in and around about T8 where I had feeling in that section of my spine for the first time, giving me extension at that level, but also greater functional support in that level for my arms. Actually the area felt sore - but I see that as an encouraging awakening of a new area of my body which will finally relieve pressure from C-spine and particularly traps.

I am still doing plenty of core stability work and have been on a few runs, increasing my length of run each time as I have had to build up again post-surgery. I am also very tired, but sleeping better again for the first time in a long while. I need my stress levels to reduce as my cholesterol is now very raised - for the first time in several years. This is a surprise as my diet hasn't really significantly changed, so stress is probably the culprit (GP to verify). 

Physio Update

I had physio both last Saturday (14th) and Wednesday (18th) July. On the first of these two appointments M worked on my lateral line and did a lot of work around sacral and gluteals. 24 hours later I did have autographs of his thumbs (or so it felt) in my gluteals. However I did manage a little bit of running within my walk to and around the park. I also did some ballet. The next day I paid for this and was in a fatigue, but had to override it as I had an overly keen painter coming to my flat to finally paint over flood damage.

On the second appointment M dealt with my left shoulder, left SCM and TMJ. There was a lot of spasming going on, but we found that holding me in the stretch made the spasm and twitching relinquish. M did a move in anterior neck (scalene) area, but I didn't like it, so he worked posteriorally again. His theory was to relieve the superficial muscles to give the deeper ones a chance. After the session I did feel 'lighter' in the area, but my neck did feel a little more out of control. He advised me to be doing some overball work every day to keep on strengthing the neck as well as pelvic tilts for deep core work. He gave me a new spiral stretch for my arms which I am really enjoying.

I had arrived at the session in a very upset and stressed out state - I am in some kind of burnout and have been through enormous stress in the last few months. Talking through the fact I had need to readdress this issue helped somewhat. I am finding physio with M really enjoyable and like the fact he works to address the fascial tissue helpful (from my position as a Bowen Therapist) and that he works on the Myers principles - which is interesting and work I know from Somatic practices and my work in Pilates. M is also very good at explaining chronic pain.

TMJ Update

                                          My Michigan Splint
On Tuesday I had an appointment to see a Head and Neck specialist. One of my GPs had not briefed the consultant at all well and despite my requests to see a particular person (who is very familiar with EDSIII). I was sent to the wrong person. Needless to say both the doctor and I managed with this odd situation as best we could. He has referred me for an MRI scan of my TMJ and a routine dental x-ray. At this point we need to decide whether is a biomechanical problem or whether we are talking management of facial pain. I showed Mr L my Michigan Splint and he could detect no major problems with wear and tear - although he said it might "feel" different over time. He said that my bite was better aligned than his and that orthodontics wouldn't solve my problem is what was my TMJ in motion that was the problem not in a static bite. Needless to say he has referred me on to the doctor I should be been sent to and we await news of scans - mainly to rule out discogenic problems. We both agreed this should be managed as conservatively as possible - e.g. no surgey! After my recent experiences I was more than happy about this.

Further 6-12 weeks recovery, Post-Operative

I saw my physio today. He said there was a lot to do, so didn't waste anytime before starting to release my traps and other "nasty" upper body trigger points. Then there was work on my quads and hips trying to do anything to disengage my hip flexors and everything that was gripping on for dear life. Although we cannot yet prove that recovery takes longer in EDSIII/HMS patients, and the evidence for wound healing is anecdotal, my physio did say all his EDS patients taken longer to recover post-operatively. M has said to me that I can expect it to take a further 6-12 weeks to get to my pre-operative state. I had feared another few weeks, but this is a lot longer than I had imagined. All my superficial muscles are just fixing so he said there is no point in jogging, as pelvic floor will not be working, so we really are back to basics and pelvic tilts and trying to regain strength in my deep front line and lateral lines (Myers). At least I know now and can feel less guilty about resting, the reason for why I am feeling so fatigued and that it is all going to take a long time. It does, however, feel very hard to keep going back to square one!

Hanging into my Joints and no control!

                                                       Isobel in 'attitude' photograph by Marial Schroer

This picture was taken on a day when I had lots of control. It was also very wet outside -but that is a different story. Anyway, It is possible for a hypermobile person to have strength, but they might find they sacrifice some of their flexibility. Some of us (e.g. me!) want it both ways, but actually prior to my hospital admission I was probably the strongest and fittest I had been in myself physically - almost ever in my life. Now I am back to hanging in my joints, moving poorly with minimal control of my hypermobile extremities. It is miserable, painful (my knees keep slightly going out on me) and very tiring. I still have numerous trigger points including in my arms and hands, upper back and neck. I have no idea how much longer this state of affairs is going to last, but I haven't bothered to get dressed and am hanging about in my pajamas until I need to go anywhere later on. I think I need to keep resting whilst doing some very gentle and minimal physiotherapy rescue exercises - e.g. pelvic tilt. Will try and see if I can talk to my physio later today.

Screaming Pain and why

Ouch. Ouch. Ouch. Every point in my body is screaming and sharp pain everywhere. I cannot deal with this. Back to bed. Here is my article to explain why http://www.telegraph.co.uk/health/9349660/I-feel-brain-fogged.-Its-a-cruelly-deceptive-illness.html

Four Pelvic Tilts and Back to Bed!

Well, this is a very sorry state of affairs. I am only able to manage four pelvic tilts before the muscles completely fatigue. I have trigger point pain in numerous sites in my upper body. I have no "fuel" and need to go food shopping - but have no energy to even get about my flat let alone manage that. I can't bear this - however, I just don't think I can fight this one. I need to rest and wait until I have energy again - however long that might take.

In Severe flare up - time for Hula-Hoops!

So we have cellulitis, fatigue, pain, and now it is time for medication in the form of Hula-Hoops. Suddenly, I have developed a craving for these little potato rings. Not the healthiest of snacks, it has to be admitted - but it is the inner child in me and it is what I want whilst I am feeling bad. The alternative is chocolate digestive biscuits.

Superficial muscle overwork, whilst deep cores ones do nothing +Hypermobility

Since my stay in hospital my muscles have deconditioned. Research by Keer & Simmonds suggests that muscle tissues atrophy greatly in the first 5-7 days during inactivity, particularly the endurance slow-twitch muscle fibres (Keer, 2003, Simmonds, 2003). Additionally, and interestingly, muscles also atrophy in response to pain and fear (Simmonds, 2003).I am not doing very well. Although I had paced my activity up again and managed to walk around my park (normally I now manage to jog around 3/4 of it). My superficial muscles are still grossly overworking at the expense of the deep core ones which are just doing nothing. This is an extremely frustrating situation and one that for reasons I do not fully understand seems to happen regularly to hypermobile people. At some point, the deep core muscles do reactivate but until they decide to activate I have to play a waiting game. The reason for this switch in the wrong muscles -e.g. superficial muscles massively overworking at the expense of the deep core ones is not something I understand. It is very irritating and means I go back to hanging into all my joints until the deep core ones decide they will bother to activate. I know that 9 days in hospital in bed hasn't helped much and although I am trying my best - including trying pelvic tilts and other things to encourage their awakening, I am pretty much stuffed until the deep core ones ignite. Do any physios or other medical experts reading this have any thoughts or theories?

Bladder-Hell! - 9 Days in hospital

I have just got home after nine days in hospital . I am utterly exhausted and my joints are in a state of collapse - a far cry away from the lovely picture there was of me in yesterday's Telegraph. I have gone back to collapsing into all my hinges and have no strength. I am sure I will get it back, but it is going to be slow. So why was there such a problem?

I was admitted for a cystoscopy, which involves a camera being inserted into the bladder so that it can be examined for size, capacity, abnormal cells. As per my entry in 16-4-2012, there had been a problem inserting a catheter because I was in terrible pain, so one other reason was to look into this as well as endometriosis.

Given my present state of anxiety in general and because of my HMS, I asked if I could be admitted the day before the procedure. I then requested that they kept me in to repeat the VCMG test and that I did not want to leave until I could properly empty my bladder. The hospital were marvellous in all aspects of this and agreed. However, the chain of events that followed was not expected. I should have been home after the VCMG - but here is what happened!

I had a choice of a suprapubic catheter or a urethral one, and upon discussion with the doctor opted for the former (remember, my previous experience was bad). The surgery went fine and although the pre-med had no effect on me at all - I lay as still as a corpse and tried very hard to keep calm when I was given the sedating injection. Afterwards I woke up fine and my throat was sore, and later that night I passed about two cups of blood, which was quite horrific (but I had been pre-warned). On Tuesday morning I felt quite good, and then after lunch went downhill rapidly and then was in severe pain. I was crying and in huge distress. My BP rocketed and the on-call doctor finally came. He took some bloods, ordered oramorph and flew off. I remained in this state for 24 hours. My abdomen was like a board. When I got down to radiology, he started to look at my bladder and said, "uh oh, we have a problem." I said, "what sort of problem..?" He said that there was fluid where there shouldn't have been and he wanted to abort this test for now and ultrasound me. This he did, and it confirmed that the suprapubic catheter had punctured my bladder and that fluid was seeping into the peritoneal fluid. He said that if I would allow him to urethrally catheter me he would be able to prove this. I agreed he could try but just as he almost got it in I couldn't cope with the pain again and he sent me back to the ward and said he would inform my team straight away.

I got back to the ward and they said to me I am 'nil by mouth' immediately. It looked like I was going to need another operation to repair the hole. The urologist came down and said to me that he would only be taking me to theatre to insert a catheter so, if they gave me lots of oramorph, would I let him try now because I would probably feel better more quickly. I agreed. He was very clever. Told me he was inserting some pain numbing drugs and popped it in. He said that the "hole" would repair itself, that we weren't sure how or when or why it happened, removed my suprapubic cannula and left.

The next day my abdomen was still sore and very tender. I hadn't opened my bowels for several days and then when I did I managed to contract diarrhoea and had to be put into an isolation room. I was kept in there for 36 hours and was not allowed out until they had proved I was not infectious. I was not. By this time, my wrist was also really hurting and it turned out I had an infection in my cannula site. My wrist was swollen and very sore and I was put on oral antibiotics. By the weekend, I required oramorph again and then had to have 3 huge doses of 2 different antiobiotics by IV line, over 2 days. My bladder was settling down and I requested a catheter bag you can wear on your leg because I was increasingly immobile and in more joint pain. This I was given, and then I was allowed to wonder around on the ward.

By Monday, they removed the catheter. It was a scary moment, but my bladder did then behave. I do still require further testing, but they are delaying it for a while so I can recover. My wrist still hurts, and I have two lots of different antibiotics to take until the end of this week. The hosptial did do everything possible, but I am aware of slower wound healing etc. I also despair about the temperature of the room - no wonder infections are rife.

I cannot cope with much more. This year has been the most stressful ever. Physically, I was fortunately well before I went to hospital, but I am very weakened again now. I will have to pace myself up carefully, and will probably need some physio. Feeling anxious, stressed and upset is not great. Needless to say, the Telegraph article did cheer me up yesterday, and all the other reader response (appreciated) - but today it is back to coping with my body and a miriad of other worries, a bladder with a hole in it and a wrist to match. Welcome home, Isobel.

Severe Autonomic Nervous System Disruption and Hypermobility Syndrome

Although I started off in severe pain over night - back pain, psoas in huge spasm and abdominals, this has now led to the following - and seems a regular pattern in myself (not sure about everyone). There seems to be severe Autonomic Nervous System (ANS) disruption

• Excessive urination - needing to pass urine on average 8 times per hour. The worst I have had is 15 times in 90 minutes, but not unusual
• Freezing cold - despite a bath, electric heatpad, two duvets and a dressing gown, thermal pyjamas and a cat - hands and feet especially cold
• Heart rate/Pulse rate changes
• Digestive system very gurgly and noisy and guts in spasm. Nausea
• Muscular spasm attacks and twitches (more neurological than Autonomic Nervous System)
• Complete brain fog and thought processes very slow. Headache
• Global aching and trigger point pain (not ANS related). In 'tender' pain
• Feeling "wired" 
• Fatigue will follow on

Today will be a fairly wasted. Trigger unknown for ANS disruptive symptoms. Recovery - 24-48 hours.

Autonomic Nervous System and Fatigue

I came home and then not long after, I received a mobile phone sales call. I was about to change deals when it was if my battery had just run out. I was suddenly ravenously hungry after a very busy and stressful day. I just couldn’t make any more decisions and go through contracts or small print. In the end I just had to hang-up and stagger to the kitchen and rapidly heat a prepared stirfry and eat before I literally passed out.

The next day I woke up with a splitting headache and ached in general. My head was very fuzzy and foggy, but I had to battle on with patients to treat. At lunchtime I received a call from a man who needed to measure a new bathroom window I need. I was standing leaning on the wall with my legs crossed in order to get any stability. I then went to bed to try and rest before treating again much later in the day. The following day things were not much better, but again I had patients in the evening. I did cancel a friend coming for coffee and a treatment swap, but had to preserve my energy. The day after that was still similar, only I was in more pain and by day five I had no energy and spent most of it in bed, aching, in severe pain and on lots of pain medication. Then the excessive urination started which seems to correlate with these episodes of severe global nodules of pain and fatigue. This, I am assuming is all related to an Autonomic Nervous System that is massively out of kilter. In my experience there is just no point in fighting this, and the quicker I give in to it, the more likely I am to recover.

Today I am finally better, and a bit cabin-feverish, which is a good sign. I am going swimming as need to do some exercise very badly – did a little ballet yesterday, from home, but had struggled with walking the day before that. Hopefully this fatigue has now subsided. Until the next time.