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.
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 extreme 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. 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. 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. 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!