Just Another Day – with EDS & POTS

 

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

 

 

 

 

Fainting for my Motability Chariot

Fainting in the car showroom wasn’t something that I had thought would be a part of my week!  We had a phone call to say that my Motability car would be arriving and it has felt like the whole process has happened so fast.  Not so long ago I was still convinced that I would be deemed too “fit” to qualify.Fainting for my Motability Chariot (2)

 

It is a shame really that the “passing out” wasn’t due to excitement, but rather a POTSIE dysautonomic response!  My symptoms are always worse in the morning from the time I get up to mid morning – my cardiologist said having laid down all night (sometimes) the body is then put under immense stress from gravity and “baggy” blood vessels to keep circulating oxygenated blood to the whole body on standing. So the system concentrates on the major organs in the abdomen, blood rushes down away from the head, pools in the hands & feet – and I feel extremely dizzy or faint. Yes, out cold! So a 9.30 appointment was never going to be great – but add in stormy weather, bright fluorescent lighting and a hot showroom and Bingo! you have the makings of a “dysautonomic nervous system” episode. Sounds grander than it feels!!

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Image from a range of products available at http://stickmancommunications.co.uk/

Anyway, the salesman came back to his desk to find me with my head back, shoes off, feet up, grey and clammy. Not my best look…..but precisely the reason that I have been awarded the enhanced rate benefit. Of course add in the dislocations, pain etc…..all adds up to me getting a brand new car and not being able to drive it! So disappointing. My mum and hubby are the named drivers on the inclusive insurance – no, the student engineer isn’t old enough, much to his disgust – and I I grudgingly accept that passing out behind the wheel or pulling an arm out of socket whilst turning the steering wheel, probably isn’t the safest way to get from A to B.

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Grey really is not my best look! Post faint…

Busman’s holiday for hubby taking a car handover and the student engineer had the bluetooth wireless phone/stereo system programmed before we had even started the engine….great except he has no understanding of why I can’t pick it up in the same “on the spectrum” way that he does.  The ride feels smoother and hopefully this will be a huge benefit for my back pain, but I haven’t been well enough to go back in it this week.  Female hormones always exacerbate my symptoms and I have had several days when I have been unable to sit upright – another post for another time!  But I’m upright today and so writing a very speedy post having missed out all week.

Car

My Chariot!

Thank you Motability for a fantastic scheme that has allowed me to have a car to house me – comfortably I hope – my wheelchair, shopping and a dog!

Poor mobility: Ehlers Danlos v chronic pain Norfolk part 2

In my last ramblings I told you how I found the wheelchair really did help to increase my freedom whilst on holiday.  I have since started to receive some useful tips about the type of chair to really help increase my independence as well as my freedom, and have filled out the forms for the NHS service.  Not sure how this will work out, but we have decided as a family that a wheelchair will become a permanent feature in the family.1069398__safe_solo_oc_simple+background_transparent+background_earth+pony_wheelchair_handicapped_artist-colon-sketchydesign78_oc-colon-melody+shine

Something that I hadn’t expected was that health problems other than the chronic back & leg pain would necessitate the need for the chair whilst we were away.  The weather was beautiful and we were really blessed, but – and I do know I shouldn’t moan – it was extremely hot and humid.  I can already hear some of you shouting “but the woman can’t cope with the cold, or air conditioning, so surely hot summer weather should be good”!  You would have thought so – but for many of us with chronic conditions our bodies become highly tuned barometers and actually can’t cope with any exoctopus-the-pirate-1412024-639x470treme changes.  So becoming too cold or too hot will have an effect upon the nervous system, which in turn controls all the other systems of the body.  This is why one person can seem to have such a Pandora’s Box of conditions –
and once that lid is opened they can come tumbling out together or appear slowly over time.  We are all different and I do now realise that many afflictions that I have had throughout my life are actually all part of the Ehlers Danlos.

For as long as I can remember I have felt rough when the weather is humid – headaches, migraines, nausea, swollen feet & ankles,wrists & hands,  dizzy spells – all in varying degrees, but over the last couple of years I have had an increasing number of faints, black spots in front of my eyes and dizzy spells. puppet-2-1623730-639x425 The sudden sweats are awful – I feel like I’ve been in the shower, but no they aren’t “hot flushes” as I can feel quite chilly.  So during our week away the wheelchair was great for those very light headed spells when I was struggling to see.  It is all very well the nice neurologist telling me that I must lie down when I get the feeling coming over me, but that isn’t so easy when walking the coast path or perusing the gift shops.  I have said in a previous post that I don’t have an actual diagnosis as yet, but I have become increasingly aware that the symptoms fit in with a POTS picture – that is postural orthostotic tachycardia syndrome – or similar and this is more common in the Ehlers Danlos population.

My GP is aware and as I did a good swoon in her surgery last month, she advised me to increase my salt intake. salt-spoon-1318134-638x350 On one particularly hot day, Duncan had gone into a vinyl store and my girl was pushing me when we stumbled,quite literally,upon a butcher’s shop with a basket full of pork scratchings for sale outside the door.  This is probably not to be recommended as the healthiest option, but a hand full of these certainly helped me to feel better.  This last week at home has been tricky as the symptoms have been rough again and the bright light during a day out triggered a migraine.  I find that my senses become heightened, particularly the sense of smell – not good when the family pet has a rank case of halitosis – and taste immediately prior to a turn – be it a faint or a migraine.  The day out that pre-empted the migraine was to a local National Trust property with mum, Dunc, my daughter & nephew.  I can’t believe that I am saying this, but I missed the wheelchair!  I felt rough, it was a lovely day and I couldn’t go for a walk with the family.  I forced myself to walk through the flower gardens, but every step was painful and I think that the impulses from my spinal cord stimulator combined with the bright light may have been making the head pains & dizziness worse.light-texture-1195217-640x480  Within a short time of getting back into the car, the nausea had started and I had visual disturbance, followed by severe head pains. Great, something else to sort out!!

This weekend has been just us “girls” as all the men are away.  We’re doing ok, but my girl, having already relocated both shoulder joints when I woke up, then found me passed out on the bedroom floor yesterday.  She is becoming quite the expert – good job as her own shoulders slip & slide, and she can’t stand up without seeing stars.  I feel a more detailed EDS post coming….

 

BTW: hope you like the new PainPals logo! painpals logo