Dance Injury and Hypermobility Syndrome

Management of Autonomic Dysfunction - Recommedations

2012-01-30T09:31:00.000-08:00

For patients who suffer from Postural Orthostatic Hypotension Syndrome - 'POTS' or 'Autonomic Dysfunction' the following are recommended:

•       Maintaining a good fluid intake (plenty of water)
•       Taking adequate dietary salt
•       Elevating the head of the bed upwards at night by about ten degrees
•       Developing a good situational awareness of factors likely to be associated with lower blood pressures. These include warm environments, prolonged standing, pain, stress, large meals, exercise, hypotensive medications, alcohol and factors associated with elevations in intrathoracic and intra-abdominal pressures (for example, coughing and micturition respectively)
•       Making use of physical counter measures such as calf exercises
•       Ensuring good general cardiovascular fitness in particularly trying to make sure that there is good lower limb muscle tone.

This came from my letter from Hospital of Neurology, Queen's Square in London (the doctor who saw me works very closely with Professor Mathias, a leading expert in Autonomic Dysfunction.

Better week!

2012-01-29T13:56:00.000-08:00

Although last Monday I was in very severe pain, things had significantly improved on Tuesday and remained manageable again since. I had a Neurology appt on Thursday to review my neck symptoms (now very well managed) and 'Propriospinal Myocloneous' or muscle spasm/twitches. I was able to give Dr T the full benefit of these and have 'youtube' footage. He is now referring me on to another expert as he would like to see whether there is a cause or more accurate diagnosis. He has also requested that I have an MRI scan of my brain, cervical, thoracic and lumbar spine. I think the lumbar spine would be particularly useful as it has been ten years since that was last done. My new physio also thought this would be beneficial. Dr T expects there to be arthritis found and nothing much else of great interest, we hope. He is reviewing me in a year.

The rest of the week has been good - my energy levels remain good, I am generally sleeping well and have been jogging a few times and did ballet on Tuesday. Just had a really lovely weekend with my family.

http://www.youtube.com/watch?v=MuyJvWCIwDM

Back in Severe Pain

2012-01-23T00:48:00.000-08:00

I am not prepared to contest my last posting - indeed I followed my own advice, and by bed-time last night my pain had generally zeroed. By 4am, things were massively different. I had a pain score of 8+ and couldn't sleep. I put on my head-pad and after much twisting and turning took 1/2 codeine tablet - only half as had to to be up for a medical appt. If I could have stayed in bed by the time I was drowsy enough to sleep, I would have done so.

Upon getting up again, had a hot bath, did some gluteal stretches (very tight!) and assessed movement function. It is easy to see why many medical professionals would dismiss someone who can "easily" reach into full forward flexion (although it hurt). Spinal extension also looks "easy" but hurts significantly, and side flexion was agony and this is where the worst of the pain is on actual movement. rotation wasn't too great either. I look very lordotic and have an egg-shaped area of pain in my left illiac fossa, upon deeper palpation. My guts aren't great which won't be helping, but I think the abdominal pain is more referred. Sitting is painful and feels like a drill is going into a specific area in my my lower back. I feel miserable. I can't cope with this anymore. I am exhausted. This flare up has now gone on over ten days. Enough is enough. Just can't function. Just wonder what the point of being is right now. Brain is as good as useless. Really fed up, in case you hadn't realised.

Exercises does help pain!

2012-01-22T02:35:00.000-08:00

My last post was quite dark, so I want to reassure all my readers that I am OK. Writing has become one of my coping mechanisms which is why I do so much of it. However, even I have days when I can sit at a computer for hours and only write half a page just because I want what I am doing (e.g. for my new book) to be perfect. I am also very easily distracted and need absolute quiet to work well, especially when I am in pain. The higher my pain, the more stressed I become, the more "aroused" I become -e.g. by noise, things that startle me, the less I am able to do. I work in a glass office and find this incredibly difficult, alarming and impossible to concentrate well. I get interrupted all the time and if I am in pain this just increases my pain and makes it feel like I am working with 100 road-diggers. At home I have much more chance of success because it is usually very quiet here and I am much more comfortable in peace and quiet and therefore in less pain. It is all logical really.

Exercise does help pain. I ran yesterday and then did an hour's swimming - 30 minutes of constant widths followed by ballet and other water-resistant exercises. I was so tired by 9.30pm, but went to bed soon after 10pm and was too tired to sleep. I woke several times and then the pain increased a lot so I took some Dihydrocodeine and then had a bad codeine trip!

My lumbar spine is better than it has been in the last few days, but there is pain and I have had referred pain in my right calf (for a change - it is usually left) which is isolated, but is referred from my back. Additionally I am having trouble with plie on my right leg because something is "stuck" at the back of my right heel. This is only occasional but will need a more permanent fix. I had taped my back, but that has gone now and I will go for a walk in the park (it is a lovely day out) and run today. The exercise does help my mood as well as my pain. It is really perverse contemplating exercising when in pain, but it is essential. I also did some rescue exercises yesterday and used hotwater bottles. I did Bowen as I went to bed. I am about to do more book writing!

Life beyond the horizon

2012-01-16T10:57:00.000-08:00

I sometimes wonder if I was very bad in my previous life. Anything that might just explain why I am continuing to suffer so much in my present life. No matter how much I try, what exercises I do, how hard I work (at work), it so often feels as though I get punched back in the face. Today is one of those days. I wonder how much more I can take of this. When I am well (as for anybody) it feels fantastic. No one should take good health foregranted. It is a real gift, and just lately, I have had a taste of it. So it now feels so bitter to be in so much pain I want to vomit, so much pain I want to curl up and die, and in so much pain I wish for someone to plunge a needle in me to end the suffering, just as I was able to do for my dear cat only a few weeks ago. This time, there could be a simple solution. I could "just" be suffering from a kidney infection. Since my urine was tested postively for a UTI, as it always seems to every single time it is tested, (last week in urology was no exception). I could be 'measurably' ill with a medically explainable problem. However I more than suspect it is not. That although there is severe pain in my spine, loins, central abdomen and illiac fossa (right and left) no one will help me - the doctors might give me some morphine, but no one will really "do" anything, until the next time, and the next time and the next time. Maybe I have just become cynical. I have so much I could give and do. I have achieved so much but could do infinitely more, but I am tired. Exhausted. Fighting at times with a force that is bigger than I can cope with and hospital upon hospital appointment and being sent for more and more tests because there are more and more things that are wrong. I want to get off this merry-go-round of hell and just float off into the sunset. Not in this body, but a long way from it. Humans can't be "put down" - but I wish I could. That would be humane. This is not humane. I will wake up again and want to fight, but at what continued cost to me and the NHS? I can contribute to the lives of others and actively want to help and support others, but I have reached my lowest ebb because I can't see things ever really changing. Ever so once in a while they do - to tease me, and then I get this. Again. I don't want to wallow in self-pity which is why I keep trying to work around this condition write about it and offer help to others. It is devastating that I have lost K and it feels hard to keep walking forwards, one foot in front of the other, but that is all I can do. I rarely get so incensed on here - but pain is highly emotive. Tomorrow might be a different and better day. Like many others with chronic painful conditions, I will keep plodding on. I just hope there isn't a next life.

Visit to the Neurological Hospital - for POTS + Hypermobility

2012-01-10T10:31:00.000-08:00

I had an appointment today at the London Neurological Hospital (attached to UCLH) to assess me for Postural Orthostatic Hypotension Syndrome (POTS). My first blood pressure lying down was something horrific like 191/158. Upon standing this dropped to 132/90. My blood pressure was very high, but typically dropped on standing, as is the case with POTS patients. The outcome is I am being referred for 3 days of intensive testing which might require admission to the local patient hotel - although I suspect I can come home as I am not really that far away. They will look at everything including bladder/bowel and blood pooling and they are going to look at hand-sweating as my hands are often damp and clammy. It all sounds fairly radical and I suspect I am useful research data for them since there is not that much that can be done if one's Autonomic Nervous System (ANS) has a mind of it's own as is often the case in hypermobile patients. Anyway - will see what happens when I go for testing. It all sounds quite interesting - I get my own scientist for about 3 days! I think it will be worth going just so I can write about it for the sake of others, even if I don't benefit. Tomorrow I have a bladder appt - it is all go, go go!

On another note - did a ten minute continuous jog with no stops. Now need to push for 15. Have come along way since only managing 90 seconds!

Happy New Year 2012!

2012-01-01T04:29:00.000-08:00

Another New Year and a chance to start afresh and full of good intentions, starting with an hour long walk with a ten minute run factored in for good measure. Yes! I wasn't able to manage more as I had been in bed with flu on and off for the past few days, so did what I thought was realistic without going too far. I even ran for the bus yesterday which is becoming a regular thing for me to do now. I am hoping that by the end of of 2012 I might be able to manage to run for 45 minutes or so. I have a long way to go yet but if I keep managing doing 2-3 jogs per week I might be able to build this up. Other considerations for more cardiovascular work involve becoming an organ donator - or cyclist and then of course there is swimming. Anyway, I am full of good resolve and was just starting to get into to some good habits at the end of 2011, so here is my chance to build upon them.

Further rehabilitation goals involve resolving bowel problems (left side very painful) and bladder issues. If these and sleep are fully dealt with, I would consider myself fully rehabilitated. It is difficult with something like endometriosis which is another separate medical condition and not exactly related to HMS - although there is considerable symptom overlap.

I wonder that if I conquer all my symptoms whether I just lose the status of HMS to 'Hypermobile.' I wonder with all my chronic pain and symptomatic overlap whether this is possible.....? I will always have faulty connective tissues, but can they be fully managed and tamed???!!! Not "Taming the Tiger" so much as "Taming the Tissue!"

Christmas 2011 was better than 2010!

2011-12-27T13:33:00.000-08:00

I have to say that this Christmas was much better for me than 2010 because (apart from IBS problems and subsequent back pain), I was physically much better and fitter. I was able to manage to do so much more with my nephew (who is now 2 and gorgeous) and hold him and not suffer such bad pain, fatigue and other repercussions. My endurance as improved and definitely my strength. The release I had in Bowen continues to make a huge difference. All the physio and exercises have paid dividends. Happy Christmas!

Lumbar spine hyperxtension + Pain!

2011-12-19T02:33:00.000-08:00

My lower back is really sore and feels "sprained" in my disc prolapse (L4/5) and hinge (area of hyperextension). I have tried Bowen but I have been doing a lot of exercise and so that area and even my abdominals and shoulder girdle feel very sore. My back is better during activity than in lying - so night-time is worse and the last two nights have not been good and I have needed to resort to codeine. In addition my guts are not good so that is probably putting more pressure on that whole area in general. It is days like this that I am going to miss K who would have known exactly what to do very quickly, purely because she knew my body so well. It will hard for me to ever trust anyone again who can so abruptly terminate treatment. I hardly have any energy to explain to someone else how to work on my body. Bowen is usually good, but it is hard self-Bowening this area as there are moves needed at the back of the knee and hamstring and require further contortionism.

I am trying Diclofenac and paracetamol. I have been doing copious gluteal stretches and when in the water and swimming, lots of pelvic tilts and twists. Fortunately there is a physio at work tomorrow, so I might seriously consider it, or acupuncture/Tui Na on Wednesday. I just don't want my back being in a state over Christmas. Also it feels like it is "about to go" in a more serious capacity in certain postures and is very clicky. I always get more anxious and nervous about my lower back flaring up because it has been so bad in the past. I am doing some Pilates and ballet later, so hope that is cathartic.

Cardiovascular work and Endurance - Update

2011-12-17T09:48:00.000-08:00

My endurance and cardiovascular fitness are both improving. I managed to jog for 15 minutes with very minimal walking breaks. Not so long ago I was still only managing about 6 minutes, with 1.30 continuous. This is much better. I had some left anterial leg pain, but it is only because I am still not going through my feet enough - also I prefer running on grass to concrete and don't have the best trainers in the world.

I was the only person in the Hydrotherapy Pool this afternoon - I did about 15 mins of continuous widths before I asked the life guard if he could make the water shallower so I could practice with no floats, but at 90cm I was still feeling too unconfident. He was kind and gave me some advice and made me swim with a float with one arm and then the other, holding it like a sandwich. I still felt too freaked out to do all he was suggesting I try and I am still not really breathing much at all - although I am when I swim with the dumb bells. Half way through the session the guards changed and the other one told me how much harder it is to swim with floats compared to without - there is so much more resistance, so I am doing well to manage several widths at a time.

Anyway, it is clear that what with now sleeping right throught the night and having no POTS symptoms anymore and a normally functioning neck, this aspect of my treatment is now giving me improved endurance and hopefully I won't experience fatigue much more - or only very minimally. I had back pain today, but I coped with doing some stretches and the exercise has made it all feel much better. There are no short-cuts in managing hypermobility syndrome, but I am considerably better since my release of last week. I would like to see how long I remain POTS and fatigue-free! Happy Days!

Update since Traumatic Release from Bowen

2011-12-16T14:35:00.000-08:00

Since the spectacular traumatic release that I got through Bowen Technique, I have had an extraordinary week. I have slept right through the night, every night more or less, and I have been out drinking several times - so this is a huge improvement. I feel energetic and totally "in my body." I have coped with a very emotionally challenging week, and managed very successfully a big event at work. I look quite different, alive and sparkly. I have had lots of energy to go out. I have done lots of exercise. I am a new person! http://www.bowenworks.org

Ballet Today

2011-12-12T12:11:00.000-08:00

I did 'Pilates into Ballet' and there seemed to be no major problems. T said that my head alignment as I am going to do a forward ports de bras wasn't correct. She explained why and then I was able to do what she wanted with no problems. I think I had been compensating incorrectly in this movement for ages. I should now be able to do it properly now my neck is better.

I had a tiny bit of dizziness at the end of the class, but we only did a bit of jumping - but otherwise felt strong, in control and very centred. My knees are quite hypermobile at the moment, but I am otherwise managing them, though first position and ronds de jambe still present a challenge.

I am supposed to be being videoed next week - so will be interesting to see what I look like now.

I did not eat enough again today, so had to buy an emergency snack about an hour before class (a healthy nut bar) but I need to eat properly as that is just foolish.

Unbelievable 'Traumatic Release - via Bowen Therapy for neck problem

2011-12-12T04:15:00.000-08:00

There is a way of doing Bowen Therapy which works differently to conventional Bowen although it involves the same types of moves. It is called 'Mind Body Bowen' and involves the patient charting symptoms and feelings as they go they appear (or not) in the body. It was developed by Margaret Spicer and Anne Schubert, two Bowen instructors in Australia. I had attended their course in c2007 and had the most amazing traumatic release witnessed by 34 people. It took two separate attempts, but I incredibly went through my own birth. I experienced this both as my mother and as myself. Since that huge release I felt calmer and more in my body than I had felt before until that time. I had several Mind Body Bowen (MBB) sessions with my Bowen instructor, Nicola Hok, and had some smaller but still hugely significant releases - one involving a water episode and another relating to my shoulder range of movement appearing, but it strongly linking to 'being patient' about things. I have conducted the work with varying degrees of success on a few patients, but have experimented with the work on my own body at various times. The potential danger of this is if the release is huge and there is no one around to talk to, or if there is no story reached in conclusion about what the body throws up. However, last night has blown me off the planet in the most spectacular fashion and might mean my neck trauma is now resolved. Here is what happened:

"Last night I was feeling very anxious and couldn't sleep. I decided to do MBB on me. Did Moves 1 and 2 and not "very much" happened, so thought it was going to be a very quiet session (sometimes I fall asleep). After moves 3 and 4 it all kicked off. Left hand was flapping about. left little finger very twitchy. Spasms on left side of the body, particularly in T-spine. I was often either breathing very deeply, very fast, or not at all! Pulse rate was fast. Eyes fixated and staring. This must have gone on for about half an hour, and I then moved slightly and was then at an odd angle. Right little finger was twitching, but spasms on left continued and I started making strange sounds. As I was being pulled further around to the right, so left pulled around, I started breathing more strangely again, with deep breaths, fast breathing, or none. I was making more strange noises as if gasping. Then, I felt a huge pull around my left neck and was completely gasping. I was choking and being strangled. This happened twice. I was very scared (in myself at the time), but managed to free myself and pull myself away. I was trying to get my hand to move the object. The realisation was immediate and obvious. The umbilcal cord was caught around my windpipe and left side of my neck. I managed to move it myself (possibly hence the hand flapping). I was near to death twice. My neck feels sore (SCM) but I was going through this whole thing for about an hour. There is no doubt in my mind what I went through. I am sitting here now having no problem doing forward flexion. If I am right about what I have experienced and document, it might mean that things improve."

Today I feel much calmer in myself and completely 'connected'. I have got normal neck flexion, no dizziness, no pain, no headaches, no temperature or pulse rate changes. My head looks straight and not rotated or in lateral flexion. Only K would be able to verify the change so will see if she notices. I will obviously have to see if this holds for at least a week with no repercussions, but if so, it could explain why physiotherapy had not ultimately managed to rehabilitate this aspect of my neck. I am hopeful this could be the final end of the matter.

People like Peter Levine have done substantial work on trauma release and PTSD and so I am hopeful that with some further help from Anne and Margaret in Australia, I will be able to document this in my new book with some rational explanation of how and why this happened.

Looks like the fact I almost died twice during my birth has contributed ongoingly to held trauma. If I have really successfully released this my life should now dramatically improve. I managed another jog this morning and I have been able to re-create a new blurb for my new book. Onwards and upwards!

Cardiovascular work and Endurance for Hypermobility Syndrome

2011-12-11T10:10:00.000-08:00

I have been swimming and jogging twice this weekend. I managed to get around the park once completely without stopping and then for a further three circuits with tiny amounts of walking only. This is the best I have managed so far. Tomorrow I need to go around 5 times, at least once without stopping at all.

I went swimming this afternoon and did another good many widths before then doing additional upper body work and some ballet in the pool. It was a good and enjoyable session and I have also not worn my cervical collar today at all, and I feel OK. I am beginning to manage a little more forward flexion, and I think this is owing to the eye exercises that K had given me - I didn't realise how subtle that movement was, but it is enough to start the beginnings of real forward flexion, hopefully without disaster.

It has taken me a long while to begin to understand that if my cardiovascular system works better, therefore I have a more efficient heart (pump). all the tissues will become better oxygenated, and then I will start to have more sustained energy and improved endurance. Now that I have accepted this I will work really hard to build on both this and the legacy of K's work.

I am also starting to understand other things I can do for myself if my back hurts - for example gluteal stretches. I am now guilty of not doing enough stretching, so this will be important to retain my usual level of mobility.

I have two goals for the new year 1) to find a jogging buddy and the 2) to have more swimming lessons so I can really swim properly without any floats. My confidence has improved in the water, my muscular control really has and now I just need to be brave enough to know I can swim on my own!

I am not going to have any physiotherapy this week and this feels a little daunting, but OK. I am sure I will manage. I have self-help tools, exercises and stretches, and medication, when needed. I can also use things like my neck collar to help. This last aspect of my rehabilitation is all about gaining self-confidence and independence. I am also my own therapist and can do work on myself, as need be.

I will miss K, but it will also be great to be able to show her that nothing she ever did with me or taught me was wasted and that I have taken it all on board, eventually!

Physio

2011-12-10T12:53:00.000-08:00

After treating me for 3 and 3/4 years, which is magnificent service, K has said that she has now taken me as far as she is able to. In the main a lot of my rehabilitation is now complete thanks to her, so the remaining issues that need a final resolve are the neck and POTS symptoms. I am being seen by the POTS team in early January and then by the Neurologist again in late January. Another physio is now taking over my case and knows me already and what has gone on thus far. We have discussed the need for 8-10 sessions for now to conclude neck and shoulder work as she too agreed that otherwise my rehabiliation is nearly complete. Neither the new physio or K could do the final aspect of the work which is the critical endurance and cardiovascular work. Only I can do that for myself. If I can manage to do that, then C-Spine, POTS and fatigue will all eventually improve. I am very sad that K needs to leave me at this point, but also respect all that she has done and will always remain grateful.

C-Spine X-Ray for Cervical Instability

2011-12-10T12:44:00.000-08:00

I had my cervical spine (neck) x-rayed on Wednesday and am now awaiting the outcome of that. The x-ray is to look for 'cervical instability' at C1/2. I did a profile pose with my neck at a normal angle, then in extension - which freaked the radiographer out because I could tip my head so far back. Then in flexion which was much more restricted. To be quite honest, I doubt that they will find anything as I suspect it will end up being due to ligamentous laxity, but the results will tell. In the meantime I have a new and better collar, so have had far less POTS symptoms and I continue with all physio specific exercises.

Measures - calves and weight

2011-12-10T12:38:00.000-08:00

I am now about 67kg. I admit this might be because I have hardly eaten for two days owing to emotional stress.
Calves - L = 40, R = 38.5cm - this is so good and they have both gone down, particularly left.

Swimming and Jogging and Walking

2011-12-10T12:35:00.000-08:00

For various reasons (it is too cold, too dark, I was too tired, 'coldy') I haven't done much exercise in just over a week, so I did a week's worth in one day which I am bound to pay for tomorrow. I did a jog in the park and then went for a walk. In the afternoon I went swimming. I did 15 mins of continuous widths then did a load of "ballet" and neck/arms specific exercises before doing another 15 mins of widths. My next step has got to be to doing this without floats and having some lessons. I am planning on both going for another jog and swim tomorrow and on Monday, a jog and then Pilates and ballet. I have got to get consistent about my exercise regime, as it is not good enough at the moment!

Arm stretch, POTS, Fatigue + Hypermobility Syndrome

2011-12-04T03:06:00.000-08:00

It has been a big week for me. My beloved cat had to be put down on Monday. I had suspected he had a cancerous growth, but the harsh reality of the determined diagnosis led to his death, but it was peaceful, albeit horribly sad, but the right thing for him. I was my birthday on Friday, and I wasn't sure what would happen this year, as my last few birthdays were a disaster. This year was different, and I had a very lovely day indeed, helped by great generosity and kindness of my work colleagues, especially K. On Saturday I had my grandmother's 90th birthday and managing family dynamics and tensions even though overall it was a actually a lovely occasion.

Last night (Saturday) I had the desire to do a big thoracic spine stretch and although this sounds no big deal, I stood against the wall and put my arms above my head and stretched them up and against the wall until my finger tips reached the ceiling (I live in a basement flat). This was the first time I had seriously managed this stretch without having a spasm attack or because those T-spine muscles were too tight to elevate my arms because of the pull from my neck. The stretch was long and and has definitely ended up being neural because I now have pain down both arms and woke this morning with a huge fatigue. I also did some neural leg stretches and gluteal stretches (left side much tighter) to help with my lower back pain - this did help.

Last night, I was also had some POTS symptoms and nausea, but had had a very long time without the collar on, which probably hadn't helped. I slept well, waking once, but woke up feeling totally fatigued with pain in all limbs. This isn't great as I have a lot to do both today and tomorrow. My body doesn't make allowances for this. Thankfully I booked Tuesday morning off work to rest, so can have a long lie-in, if needs be. This is good planning on my behalf, but need something now!!!

Eyes and spasm!

2011-12-01T13:03:00.000-08:00

I didn't expect this - but I decided to do my eye exercise lying down in bed - the exercise just involves following my finger up and down and sid to side and then bringing my finger towards my face. It is all about eye-tracking. I started to "spasm" and "twitch" all over the place from trying the exercise lying down. This didn't happen when I was doing this standing.

Running - the pitiful truth

2011-12-01T13:00:00.000-08:00

I timed myself running before I got out of breath today and managed only 1.28. I then did 6.40 altogether of running and walking, trying to run as much as I could. I am going to have to do this at least twice a week as this is very poor.

Lower Back - Range of Movement and Trunk Rotation

2011-11-29T13:19:00.000-08:00

Yesterday in physio, K was very successful in giving me hugely improved trunk rotation - I was like an owl by the end of the session. Much of this release seemed to come from the work K did on my pectoral muscles. This has held well and I have just done my exercises and a ballet class all of which involve spinal rotation.

What has not improved, unfortunately is my spinal flexion ROM and I have still lost some ROM in my spine and cannot achieve quite what I would like to be able to - but a) I am hypermobile and used to a particular ROM and b) I am a ballet dancer, so expect a certain ROM as well. In addition, my right leg (usually the most flexible) seems very restricted in 2nd and I couldn't get my normal height in grand battement - but I am fussy!

However, I danced again with the collar on tonight and we had some quite difficult battement fondus and adage to do and I think I was dancing with control and good use of core. This is an achievement in itself. Pirouettes were good, allegro, not great. I seriously need to address my feet in allegro, but my cardiovascular fitness, or lack thereof is now holding up my progress in jumping work. K thinks I should be able to run for 20 minutes and be able to hold a conversation. She hasn't seen me running for the bus which usually leaves me looking like I am going to need resuscitation. I have requested a "running lesson" when I can safely manage 5 minutes continuous running. This could take me some time. I must now factor in at least 2 runs per week.

Speech Therapy in Physiotherapy for TMJ problem

2011-11-29T12:47:00.000-08:00

My latest physio session was interesting. K has been working on my TMJ for sometime and this week noticed that my right upper lip was not moving well whilst observing me talking. As a result she then did some manual work on me before then asking me to count to twenty. First I thought this was rather odd, but then I realised what she was wanting me to do. Basically when I talk, I do not articulate very well with my facial muscles or really use them much at all, so this has now become a new exercise - Speech Therapy in Physio! Another part of K's multi talented and multifaceted approach with me. I must say I found it all rather embarrassing and was rather self-conscious about it, but now I am even practising it on the bus. As K said, "Diction, Darling." This is all actor stuff!

Just been swimming - good session!

2011-11-26T10:11:00.000-08:00

I have just had a really good swimming session. I managed the most I have even managed (so hope that I am not too fatigued tomorrow). I did about 30 minutes of continuous widths alternating with crawl and breast stroke. I still prefer breast stroke because of the natural hypermobility of my hips doing 'frog legs', but this is much harder work for my upper back and shoulders. I find the rotational aspect of crawl more challenging and the parallel kicking - still it was great for my endurance and cardiovascular fitness, which was K's aim of sending me swimming.

After 30 mins, they put the bubbles on as it is a Hydrotherapy pool and so I used this time to do some targetted exercises for my upper back, neck and arms and then some ballet exercises as it is so good doing them in the water. I then went back to width swimming for the final ten minutes of the session. I did a little work lying on my back, but that was more for relaxation.

Anyway, I wanted to post something positive on here!

POTS Symptoms/Vascular and Headache + Hypermobile

2011-11-25T11:04:00.000-08:00

I don't know how or why I am still on a computer given my existing symptoms. I could be cut in half and in pain on the left-side of my body from the top of my head and down the whole of my left-side of body. I have extremely cold hands, but my legs are warm and normal temperature. I have am "locked" solid and as is if it is squeezed on the left side of my head and neck and into my TMJ and have been seeing "stars" but not of the 'I'm a Celebratory get me out of here' kind. I was fine in the morning, although I had woken up at 4am with a busy head an anxiety about various things and then fell asleep again and struggled to get up for work. I feel very sick and nauseous and so tired of this whole situation - this is with the collar on! I had a late lunch at work as had been in early which might have made things worse. I am quite low in myself and was supposed to be going out for drinks with people after work, but just not up to it at all. Work was a struggle in the afternoon as it feels my brain is separated from my body and very hard for me to think through anything at all.

I have done my physio exercises and now taken more antisickness tablets and diazepam. I did some Bowen at lunch which gave a brief period of relief. My arms are very symptomatic and just so cold, even though it is quite mild.

One other new thing I have been trying this week is use of a SAD lamp - but it is too early to say how this is helping or not.

On the positive side - had 2 much improved days in the week with no fatigue or symptoms, but this is unbelievable. I do with this would all go away.

Finally, my bladder is affected in that there is a delay in me wanting to pass urine even if I need to. I then feel like an electric shock going down my back and then I can release my bladder. It is a really strange sensation. Running water seems to help!

I have been trying new memory foam pillows and they are quite hard, but think they are giving my neck more support - still quite a lot going on.

Hoping to swim and do a bit of a run this weekend and also to actually do something nice and normal like get out for the day to see a friend!

More book writing is also on the agenda!