Category: POTS

Just Another Day – with EDS & POTS

On By Claire Saul (PainPalsBlog)In chronic illness, Dysautonomia, Ehlers Danlos Syndrome, Poem, POTS11 Comments

 

Just Another Day pin

 

The world feels off kilter

I’m spinning…..round and round

Every time I lift my head

The snow  descends, engulfs me

At times it overwhelms me

And then, bang, down I fall.

 

Lucy EDS 1

 

Falling, falling, twisting down

How long it takes to reach the ground

Slow motion into blackness

Nothingness

Painless

Floating.

 

Pain, pain, pain

Why am I on the ground?

A twist here and a bend there

Limbs entangled, joints at angles

Unnatural, except for me

Stretch and snap is the norm.

 

Lucy EDS 2

Salt, water; water, salt

Compression to limbs.

Like an autumn leaf

I fall and break

My body fragile, unstable

Just another day with EDS and POTS.

POTS & Me

 

 

 

 

What are Dysautonomia and POTS?

On By Claire Saul (PainPalsBlog)In chronic illness, Dysautonomia, Ehlers Danlos Syndrome, POTS6 Comments

Hannah on Sunshine and Spoons blog has written this post about Dysautonomia and POTS (postural orthostatic tachycardia syndrome).

She recently did a straw poll on a facebook group that we belong to and very few people had any idea what this medical term means.  I knew because I have it…..but had never come across the term in my own medical career.  Some of you will have read how my symptoms have been particularly bad recently, but I am now able to stand upright again!!

Please read the whole piece and share in order to help us spread awareness!

What are Dysautonomia and POTS?

What are Dysautonomia and POTS-

Did you know that October is Dysautonomia Awareness Month?

Let me back that up a little….do you know what dysautonomia is?

If you said no, you’re not alone.  Most people have never even heard of it.  I didn’t know what it was either until I was diagnosed with it.  I have Postural Orthostatic Tachycardia Syndrome or POTS which is one of the autonomic disorders that falls under the umbrella term of dysautonomia.  Other types include Neurocardiogenic Syncope or NCS and Multiple System Atrophy or MSA.

Despite the fact that many people have never heard of dysautonomia, it’s not rare.  It’s estimated that over 70 million people around the world have it in one form or another.  Often, it’s a secondary condition to another disease or disorder such as diabetes, Ehlers Danlos Syndrome, Multiple Sclerosis, Lupus, Celiac Disease, arthritis, and more   The most severe cases can result in death.

What is POTS?
Your autonomic nervous system regulates different functions throughout your body such as your heart, digestion, temperature, blood pressure, etc.  People with an autonomic disorder such as POTS have issues regulating those things.

 

To read the whole post visit Sunshine and Spoons 

You will also find great links to Hannah’s Sunshine and Spoons Shop

POTSWarrior5

 

Rheumatology, Cardiology, Falling Down and Midodrine

On By Claire Saul (PainPalsBlog)In chronic illness, Dysautonomia, Ehlers Danlos Syndrome, POTSLeave a comment

Finding the time and energy to write has been a challenge recently.  I’m not sure if you would describe my worsening ailments as a flare, but my poor, body has been struggling to hold things together.0ff7167e97f625a09a50879d90d5057c

Last week I saw my GP and my cardiologist and managed to get two new referrals in the process.  The first to a new rheumatologist, recommended by the London hospital who diagnosed me, and the second to an endocrinologist to check if the cardiologist is missing anything.  Don’t you just love these multisystem chronic illnesses?!

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For the rheumy we have a family outing on the cards, as the A level student and lovely girl have also been referred.  The bookings department called last Friday and asked if we would like consecutive appointments – I bet the consultant will love it when she sees the same surname appearing three times in one morning.  “What another genetic problem?!”  I have put off having the kids diagnosed with hEDS even though I can see elements in all three of them, but it has only been recently that I learnt from the lovely online support that they might be eligible for extra help in exams.  This is down to the pain and difficulty with writing that we with bendy fingers and dodgy collagen experience.  My daughter has never been able to hold a pen properly and they both struggle to be able write as fast as their peers – their brother, the uni student, was exactly the same at school.  In fact his fingers are so flexible that you might think they were missing their bones altogether.

The schools have responded really well and thanks to some fantastic blog posts that I was able to direct them towards, have now heard of Ehlers Danlos Syndromes.  We missed the deadline with the exams boards for the A level student to receive extra time (he needs a formal consultant recommendation) but he is allowed to be in a smaller room and to have rest breaks.  Had his typing been quicker, he could have opted to use a laptop.  My daughter’s school have been fantastic!  They are keen to learn – obviously they have seen me deteriorate after repeated surgeries and progress into a wheelchair – and many teachers have been upset to learn that she has not spoken up about pain, dislocations and difficulties in games classes.  Of course she is worried that a fuss shouldn’t be made as there are other people more in need!  But in terms of her year 10 exams after Easter, she will use a laptop and take rest breaks.  When I was at school I had no idea that the pain I always had and my difficulty getting through written work was actually down to a genuine problem – in fact at the beginning of this academic year none of us dreamt that our pain would actually be considered a reason for the kids to need extra help!  Of course the new guidelines came out last week for diagnosis criteria, so I’m not sure what they might be deemed as – well I could say a few choice words that have nothing to do with EDS!

More to come about the criteria and of course how we all get on.

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The EhlersDanlos Syndromes International Classification

I have been on the waiting list for a follow up cardiology appointment since the end of last year.  Immediately after my tilt table test, I started the synthetic steroid fludrocortisone to increase my circulating fluid and raise my blood pressure…if anything it made me worse as the faints, falls and injuries have come thick and fast.  My GP tried to have an appointment fast tracked, but when this couldn’t be arranged the cardiology department told me to double the fludro dose and continue with compression tights, fluids, salt.  I have felt so unwell and so tired!  Last week the consultant started me on midodrine, which in the UK can only be prescribed by a cardiologist for extreme cases of low BP that haven’t responded to conventional treatment.  It is early days and I am only on a low dose three times a day – but I cautiously think there is a small improvement.  The last dose of the day mustn’t be too close to lying down in bed as there is a risk of increased blood pressure when flat and strokes.  One side effect I do have is a strange creeping, tingling sensation of the skin particularly my scalp – about an hour after I take it when it reaches highest blood concentration level.  So if you see me out and I’m itchy, I really don’t have nits!!13413444_143336392741362_1604407187_n

 

A Chronic Comparison?

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Disability, Ehlers Danlos Syndrome, POTS, Spinal cord stimulator14 Comments

I’ve had this post roaming around my mind for a couple of weeks now, and finally put pen to paper…or rather put the finger splints on and attacked the keyboard.

Last week I took part in an on line research forum into chronic lower back pain.  Due to confidentiality clauses I can’t tell you any details, but a group of us were required to spend at least an hour each day answering a series of questions, or giving our thoughts and feelings about our conditions.  We were also encouraged to comment on each other’s posts and interact as on any forum.  The week before Duncan and I went to an EDS support group, where we were joined by about 20 others and asked to think about our coping strategies for different aspects of the illness.  The final trigger was a tv programme featuring my chronic condition, Ehlers Danlos Syndrome.ch7jwb_weaaooad

So I feel that I’ve spent a lot of time recently reflecting on my various conditions and revisiting my “journey” – don’t you just hate that expression, very X Factor or Strictly Come Dancing!  It was suggested for the forum that we plot a picture of our individual pain journeys, and I was surprised at just how long it took me to do this and how much was on it.  Of course, I needed to go back to childhood as when I looked back I cannot remember a time of being without pain, but as a child and teen I assumed that everyone else felt the same way.  file_000-9

I know that it isn’t particularly clear but this is my “map” detailing the EDS and the original back injury and subsequent chronic back pain.  Those of us drawing these maps all had very different backgrounds & experiences, and I was really inspired and moved by some of the other stories. I started to become aware that some people were being put off the idea of certain treatments (eg surgery) because of the negative experience of others.

The support group was a night out for us the previous week, and we even managed a meal before.  It is good meeting with others in similar positions and it is always great to welcome new people who attend, particularly as we are a very new group. We were able to come away with some advice for dealing with extremely anxious teens – there is a lot of literature out there now that recognises a direct link between anxiety  and EDS.  I must admit though, that I do feel a little conflicted sometimes in these group situations – the support on offer can be fantastic, but it can also be tricky taking on board a line of treatment/therapy that someone else swears by that either hasn’t or may not work for you.  When another person has gone on, for instance, a special diet and all their symptoms have gone into remission giving them a new lease of life…..I used to see this when I was working in palliative care and patients would wonder if  they hadn’t tried hard enough with a particular diet or vitamin regime, that it was their own fault that they hadn’t halted their illness when this had cured Mr X.

I wonder if it is just human nature to compare ourselves to others, in sickness and in health as the saying goes. But just how infuriating is it when some well meaning person tells you about the wonderful remedy that Auntie Ethel has just used with great success for her back pain/migraines/or even a serious illness cure?  Do you not want to scream out “Do you really think that I haven’t tried?” because I know that I do!  But of course I don’t…..

When these comparisons happen, be it ourselves or others making them,  I wonder if there can be a thin line between support and competition.  I do realise that this probably sounds awful as no one who is chronically ill wants to compete with anyone else over symptoms.  But with some of the multi system syndromes that we spoonies have, no two people will ever present in the same way and the list of ailments we have can be endless.  I have been reading facebook posts only this evening from frustrated people who find that their own families don’t believe their diagnosis because “cousin Freddy has that and he is much worse”.  I think that we all know that there are still medics out there who call into question the legitimacy of some syndromes and the severity of patient symptoms.

Just because a certain operation helped me doesn’t mean that it will help you;  just because you have found a particular drug fantastic doesn’t mean it will help me; just because my health regime allows me to walk for miles every day doesn’t mean that it will get you out of your wheelchair (it doesn’t BTW – I use my chair more and more!).  My back & leg pain and the treatment that I have had to undergo to find any relief is very different to the chronic EDS pain that I also suffer.  The only people who have really understood the former have been my group on the scs pain programme and those in neuromodualtion groups.  Yet whilst some people who have fantastic success with the stimulators have had a new lease of life,  I have actually deteriorated physically despite the stimulator being a success.

My deterioration is down to my EDS, escalation of POTS and an increase in my EDS pain.  Ironically the requirement to wean myself off the opiates in order to have the stimulator to reduce one type of pain, resulted in an increase in the other!  Many people who have had back problems would be amazed that even with the metal screws fusing my spine and the electrodes to control the pain, I can still hold a pretty good downwards facing dog yoga pose.  But of course my zebra friends know that this is actually down to being bendy and that sometimes being able to get into those strange positions is, for us, more dangerous than beneficial.

I am probably my own worst enemy when it comes to making comparisons and always feeling that I have little to complain about.  This happened when I watched the BBC DIY SOS which featured 18 year old Antonia who has Ehlers Danlos Syndrome and had been hospitalised for 3 years. 15831613-large The programme was great for highlighting EDS and this amazing young lady – I watched it twice and cried each time.  Of course I turned to my lovely teen girl and said “I feel guilty for making a fuss!” and whilst her brothers would probably have agreed with me, my lovely girl (now suffering her own dislocations, hand pain, anxiety, etc) told me off for thinking that way telling me “It is all relative”.  Out of the mouths of babes….

So what am I trying to say?  We are all individuals.  We will all experience a common cold differently (think man flu!!).  So for the many debilitating chronic syndromes out there, no two sufferers will experience the same symptoms, the same reactions to therapies or the same psychological impact as another.  I must allow myself to live with my condition in the best way that I can and for you to do the same – and somewhere along the way we can support each other and hope that the healthy world will do the same without expectation or judgement.

Pin for later:

A Chronic Comparison pin

 

 

 

What does Ehlers Danlos Syndrome look like?

On By Claire Saul (PainPalsBlog)In chronic illness, Ehlers Danlos Syndrome, POTS1 Comment

Please just take a moment out of your day to view these remarkable photos that the Ehlers Danlos facebook community have shared with The Mighty in response to the question

What does Ehlers Danlos Syndrome “look like”?

A couple of my own to add to the mix……

SONY DSC
Not even doing the full bend here – don’t do this at home!
SONY DSC
Standing at home for pics of Lord & Lady Goth….but spent the party in my wheelchair as POTS bad & had just fainted before this!
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Pretty one this….slow healing after one of the spinal fusions
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Would you know? These 3 all have elements, tho not formerly diagnosed…..chronic migraines, all have mega anxiety issues and spot the bendy arm!

A Chronic Christmas – inconvenient illness for the holidays

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Disability, Disability Aids, Ehlers Danlos Syndrome, POTS2 Comments

Pain pals,

I’ve been a bit low on spoons recently – ok, almost negative some days over the last month or so.  Blog posts, social media & all things requiring thought or energy have been low down the list of to dos.  Over the years I have been able to soldier on through the pain and dislocations, but I can honestly say that my worsening POTS/dysautonomic symptoms have made me feel so ill and the current drugs have done nothing to help.  Tricky getting ready for Christmas then when also caring for a house full of teens/students “dying” with coughs & colds!img_20161228_093658718

Wouldn’t it be great if chronic illness gave us a break over the holidays?  When the slightest change in the weather didn’t send symptoms into flight & flare? Shame it doesn’t work like that, but instead can stop us in our tracks.  I have lost count of the number of times in recent weeks when I have had to cancel plans, let people down and cursed my inability to just get on with life.  POTS meant I missed my nephew’s birthday party – he wasn’t bothered as Uncle Duncan was much better at go karting and I had managed the tricky task of baking a Lego Star Wars cake.

Uncle Dunc doing his bit!

The school Christmas fair and the Early Years nativity were also off the social calendar at the last minute.  My teen daughter was secretly delighted that I wasn’t well enough to drag her to her school Christmas concert!  I have cancelled coffee & lunch, rearranged and then the same again.  We are supposed to feel merry & jolly in December, or so we are told, but it isn’t always easy when your body is screaming at you.

But there have been memorable moments.  I have spent this year trying so hard to shift some of the massive amount of weight that I’ve gained (chronic pain, immobility and drugs…lyrica mainly!) and was just starting to get some of my old clothes on, when I find myself on a synthetic steroid that will cause my ankles to resemble an elephants.  Fantastic!  One of my “lovely” sons said that he hoped this would mean that I wouldn’t feel the need to starve myself over Christmas as I was going to get fatter anyway.  Think there may be a silver lining there somewhere…..Then there was the first occasion that I put on my newly acquired compression tights – an ebay “bargain” at £30, I kid you not as they retail at £90! – it was a 2 person job, with my lovely girl helping her poor old mum puff & sweat the tightest lycra you can imagine up her legs.  We were both exhausted and if ever there has been a time to feel light headed this was it.  Then I remembered why I had put them on.  I had a school reunion – an 80s decade reunion in fact – that I had helped arrange, and now I wouldn’t be able to go to the loo all day as I couldn’t get my tights up or down!!  30792624840_5e2ed23d47_o
Said day was a great success, friends showed up who I hadn’t seen since school and whilst being there with a wheelchair was hard to get my head around, I did it.  About 40 converged upon a local hostelry for further refreshment after the formal lunch. Less said about the following days the better….

 

 

The wheelchair has seen some action and helped with Christmas shopping, a meal out and dragging the dog for walks.  I must add here that none of this would have been possible without my spinal cord stimulator – whilst it does not get rid of my pain completely, I would be unable to cope without it.  I might have missed some events, but we did see a particularly entertaining nativity “Lights, Camel, Action” performed by the 5 – 8 year olds at our school – alternative name could have been “Strictly Come Nativity”. Of course the occasion when we forgot to stick it in the car, I managed a fantastic faint at the checkout of Waitrose supermarket.  I terrified a couple of young assistants who ran for water & debated calling an ambulance, but came round to hear Duncan going back to finish paying for the shopping and telling the shocked cashier “don’t worry, she does this all the time”! Well, a sense of humour is vital.  The wheelchair even saw a trip to parents’ evening at the A level student’s school, much to his embarrassment.  I did point out that it is me who has to sit in it – funny though that he finds it quite hard to get his head around me using it, and it was left at the door.  I’m sure that he wished some of his teachers’ comments had been left there too – mainly of the “needs to start working harder ” variety!!  He is such a jammy sod though that he received an unconditional offer just before Christmas – not a reason to stop working I hear myself state on a daily basis.

The final week of the school term arrived and Duncan was jetting off to Italy to meet with the design engineers at a fellow small audio company.  The original plan had been for us both to go – Audio Deva are an artisan specialist company designing fantastic turntables that Duncan hopes his new venture “Intimate Audio” will work with – but it15057249_634518260052328_1346051735637983232_n all happened rather quickly and reality was I wouldn’t be well enough.  So the student engineer found himself on a pre Christmas jolly to Genoa – just as well though as I’m not sure how useful I would have been when they stripped down a deck and rebuilt it. Daniel’s soldering skills beat mine.  This left me alone with the teens and I did enjoy the couple of days I had to myself.  I have to admit that I didn’t and couldn’t do much, but watched various cheesy Christmas movies and also managed to read some chick lit on the kindle – easier to hold when wrists are dislocating & painful!  We even hosted a small party for my book club friends.The following week Duncan went on his travels again with a trip to the in laws with the A level student, leaving me with my girl.  She worries about me but we did ok with no falls, and even managed some baking (cranberry & cinnamon donuts).img_20161124_193246307img_20161228_093523565_hdr

So it really has not been all bad.  I have missed writing and the support of my social media chronic pals, but I know that you all “get it”.  Christmas has been exhausting and I am looking forward to some R&R now, (earplugs needed with both sons at home).

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Breakfast Xmas morning – wonky cutting courtesy of Mr Saul

But the family have pulled together, some more than others (thanks mum & dad!), and we have come through the festivities relatively unscathed – they still can’t see when the toilets need cleaning though!

I hope that you have had a peaceful Christmas holiday,  Claire x

 

 

 

 

 

 

 

 

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The beautiful Italian home of Audio Deva

 

Tilt table, echo, cardiology & probably #POTS..Y!

On By Claire Saul (PainPalsBlog)In chronic illness, Dysautonomia, POTS4 Comments

So yesterday saw me back in our local cardiology department to undergo investigations for my funny turns & faints – the symptoms of a malfunctioning nervous system, common with EDS.  I was inexplicably nervous – particularly when I think about some of the major operations I have had over the years.  Maybe it was the thought of having my symptoms induced or worrying that the tests might be negative and I might have to start convincing everyone that I’m not imagining my symptoms.

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Anyway we arrived at lunchtime, me having starved for the obligatory number of hours, and the first test was an echo ultrasound of my heart.  The first thing to establish was whether my scs would interfere with the scan as it did with the 12 lead ECG on my last visit.  I perhaps should have been more concerned about my joints as I managed to pop my shoulder out whilst lying on my side, scaring the young sonographer silly as it literally “popped”.  Not a good start before the tilt table as a sling was hung from the very same shoulder to support some of the machinery!  The ladies performing the test were most concerned about my pain and my ability to stand still for long enough – I was instructed not to be brave.  At this point we didn’t know if I would be able to keep my stimulator on or whether it would interfere with the heart trace.  Happily there was no interference, so at least I would be able to keep my leg pain under control!

The first part of the test is easy – provided lying flat isn’t an issue (I managed) – lying on the table and being monitored for about 10 minutes.  The next stage would normally be to be tilted up to standing – yes I was strapped on – and monitored for a further 20 minutes prior to GTN spray being put under the tongue, ahead of the final monitoring after the blood vessels had dilated.  So great care was taken to elevate me gently to avoid jolting my back….and within seconds my vision was going, my blood pressure dropped, my pulse jumped and I started to heave!  With this heaving apparently my BP dropped too low to measure and the student thought I was about to throw up over her.  The next thing I was aware of was being flat and being told that this was the quickest and most dramatic positive result they had ever had!  The same thing happened when I was slowly sat up 5 minutes later, so the test needed to go no further.

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Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.

I was sent home attached to a 7 day ECG monitor which I need to activate every time I have palpitations, sweats or dizzy spells and am due back to see the cardiologist on Thursday presumably to talk POTS (postural orthostotic tachycardia syndrome). This morning I woke with the headache from hell and have been so tired, and I’m also feeling slightly paranoid about when I am pressing the heart trace button on my new piece of equipment -did I really feel something??  For the next few days I will be filling in a data diary and be even more wired than usual – with electronic gadgets that is!

Read fellow zebra Capricious’s account of preparation for autonomic testing here: https://zebrapit.com/2018/02/13/autonomic-testing-jitters/

 

If POTS had an Anthem

On By Claire Saul (PainPalsBlog)In POTSLeave a comment

When I read Amy’s post I couldn’t stop laughing – except the breathlessness did stop me!! Katie Perry is singing about my temperature control this morning……

POTS: Finding Smiles in the Trials

I found our anthem.  It speaks to so many of the conditions of this syndrome including body temperature regulation issues, inability to commit to showing up somewhere due to symptoms and flares, being upright one second then passed out another, fighting with your body one moment and loving it another, and the frustrations of having to stay home while knowing that going out will only cause more problems.

That’s right, I found a song that encompasses all of these symptoms.  Would you be surprised to hear that Katie Perry sings our song?

Check out the chorus of Hot N Cold:

‘Cause you’re hot then you’re cold
You’re yes then you’re no
You’re in then you’re out
You’re up then you’re down
You’re wrong when it’s right
It’s black and it’s white
We fight, we break up
We kiss, we make up
(You) You don’t really want to stay, no
(You) But you don’t really…

View original post 321 more words

Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today

On By Claire Saul (PainPalsBlog)In Ehlers Danlos Syndrome, POTS

I wrote about my visit to the cardiologist last week, and as an Ehlers Danlos bendy with chronic pain and other strange symptoms including fainting, I found this article by a UK based GP to be easy to read and understand.  At the moment I’m not sure what I will be labelled with, but the more I read the more i am able to join the dots on a variety of symptoms from over the years – for instance the strange discolouration in my feet and calves as a teenager that looked like fluid pooling, for which my GP prescribed circulation tablets.  Just last week during the hot weather, every time I let my hands lower below heart level they turned purple, then navy whilst swelling with bumps resembling varicose veins!  See lovely pictures of my swollen hands – fortunately I was able to pull all my rings off before it was too late!File 26-08-2016, 12 56 25 File 26-08-2016, 12 56 52

 

Our series continues as GP Dr Lesley Kavi discusses this lesser-known condition.

“Recognising disorders of the autonomic nervous system is a challenge for GPs. Symptoms can be subtle, non-specific and mimic other conditions (1). Yet dysautonomia can be a source of considerable disability and poor quality of life for patients. The postural tachycardia syndrome is no exception (2)”

See full article at Source: Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today

Cardiology, POTS & Some Enchanted Entertainment

On By Claire Saul (PainPalsBlog)In Dysautonomia, Ehlers Danlos Syndrome, POTS, Some Enchanted Evening3 Comments

This last week has been a challenge, as I’ve really tried to carry on as a normal mum during the school holidays – and have used far too many spoons. So much for pacing myself.  Those of you who follow my facebook page will already know that I went for afternoon tea with my mum and some friends at the very posh Cannizaro Park, Wimbledon.  We were c
elebrating the 80th birthday of a family friend and I was delighted to be able to enjoy the afternoon – and to be able to wear a dress that I haven’t been able to get in to for a while.

So to those all too frequent swoony moments (no hunks involved sadly) and one story that File 24-08-2016, 17 01 22I put on facebook.  The weather has been beautiful, but has left me with massive dizzy spells and faints – I even managed a fantastic one during a short dog
walk the other day! I knew I felt rough, so Duncan called home for a teenager to come and help get me along the road. By the time Olly came wandering along I was just coming round on the pavement….what do you think he did? Straight to the dog to check he was ok!! Forget the blasted dog, what about your mother sprawled on the pavement?? Dunc says I’m not allowed out again…

 

 

 

This week has included a hospital trip to see a new consultant in a different speciality – cardiology.  The neurologist had recommended that I be seen as she felt, along with me, that the faints are not epilepsy related but probably a dysautonomia condition.  It probably wasn’t a bad thing that it was a warm day and as I wasn’t seen until late afternoon, I was feeling pretty rough.  I was lightheaded and massively fatigued.  Twelve lead ECG first with a new cardiographer and then the usual wait in a corridor.  My blood pressure was taken on a dynamap(always think a proper sphyg better) in the corridor and, not surprisingly, was elevated – well for me anyway, as my BP is normally on the low side.  The cardiologist was great.  He seemed to have a sound understanding of Ehlers Danlos, wanted to know about childhood issues related to it, when & where I diagnosed (University College Hospital, London) and what heart investigations I had already had…..answer: none since childhood.  He seemed slightly surprised, but went through some of the common issues of leaky valves, postural issues, thyroid levels, palpitations and then took a lying animages (3)d standing BP.  Whilst there was no significant difference with this (and I thought he nay think I’m making it up), he could see that I couldn’t stand up straight – it feels like I’m being pushed backwards, although I’m told I fall forwards. Weird! Anyway, he believes me enough that he has ordered a tilt table test (exactly as it sounds, but the patient is left lying flat for considerably longer than an outpatients lying/standing BP and injected with nitrates etc to observe reaction when tilted to angles which will induce symptoms. Can’t wait!), bloods and a 5 day heart trace.  He mentioned postural orthostotic tachycardia syndrome (POTS) and that postural circulatory issues are a symptom of EDS – which I knew, but had been concerned that he might not recognise!  More news as it unfolds.

 

The light entertainment has been enjoyable but tiring.  I have been writing this post for days now, but the fatigue and brain fog have taken over!  Duncan had bought tickets for my mum and I to visit Cadogan Hall in London for the concert “An Enchanted Evening” – with Lesley Garrett, Ruthie Henshall, Gary Wilmott and Michael Xavier (I have copied my short review to the books & reviews page). download (2) Public transport is a nightmare for me these days and I can’t manage the journey home after a show, so Duncan drove us up to Sloane Square where we managed to get the one and only disabled bay.  This is where I feel so guilty as my husband came to dinner with us – really could have done with a wheelchair to get to the restaurant- and then took himself off for the couple of hours that we were being enchanted!  Our darling eldest son was also in London for the evening and eventually called his father to invite him to join his group for drinks – because he felt guilty.  Too late, student engineer – Dad was already headed down the Kings Road for the Curzon and a performance of the new David Brent film. Of course Duncan spent many years working on THAT Slough trading estate! Office fans will understand.  Without him I just would not have been able to do this night out, and for that I am so grateful.

We had a lovely evening as a family with our dear friends Evi & David over the weekend too – they have been a major support to us in so many ways for all the family, and this is ongoing.  Evi and I are just massively relieved that David & Duncan have found each other – kindred spirits in their love of Prog Rock music, meaning that we don’t have to listen any more (sorry, boys!).  Then, bam!, it hit me.  The fatigue, the pain – everywhere, the swelling of my feet and hands…..here comes another PJ day!  I’m so sorry, I can’t come out today….