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 ex
treme 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! 
It was my birthday at the weekend. A day of very mixed emotions. You are supposed to feel happy and enjoy the day aren’t you, but I couldn’t shift a low. Maybe it was the realisation that I never dreamt on my 40th that 7 years later I would be experiencing even tougher difficulties. Or maybe it was trying to push the thought to the back of my mind that I might have to live another couple of decades like this and “this” was not part of the game plan.
Does it sound awful to say that I was looking forward to having some time alone? Do you think that happened? How quickly does 5 days fly by, particularly when one child goes down with a migraine? For me I needed to prove to myself that I can still manage alone – or at least attempt to. I know that I have spoken before about the loss of independence being something that I have really struggled with. I had a meeting at the school and had to ask the head if he would be able to drop me home after. I knew that he wouldn’t have a problem with it – in fact another teacher dropped me back, and I only live across the road – but I still have a problem with it! Somehow the feeling of being unable to stand on my own two feet – literally at times – makes me feel deskilled. I waited until I knew that my 17 year old son was home one morning to help me out of the shower before I had a scrub and hairwash, and I promised Duncan that I would not walk about the house without a phone in case I had another fall and/or faint.
r an ultrasound and orthopaedic appointment, and poor old Geoff, my very patient physio, is going to receive a call to ask for help with not just the shoulders any more. I have also spotted a tube of ibuprofen gel in my latest prescription bag….I wonder which dodgy body part I’m supposed to apply it to? There isn’t enough to cover them all!! The second appointment was with the neurologist to check me out for seizures. I am delighted to report – and just slightly relieved – that I passed muster and don’t have epilepsy. But – and no great surprises here – the faints, dizzy spells, palpitations etc are probably due to the collagen issues of EDS within my blood vessels combined with the chronic nerve pain…so another referral is winging its way to a cardiologist to put me on a tilting table to attempt to play havoc with my blood pressure!! And investigate POTS – no not another foray into drugs, but postural orthostatic tachycardia syndrome!
coming on – not sure how this will be received in the aisles of M&S.
Through TBC I have joined a group called Netgalley, which is a forum for “professional readers” to read and review new books prior to official publication. I’m not quite sure how I will get on with either of these sites – both ask for honest reviews to be published on goodreads and Amazon – but I thought that I would also have a go at posting some Book Chat on Painpals for my friends in the chronic community. At the moment I have opened a new page at the top of the blog and my first review, which is for a new book on TBC, can now be found there. Please stick with me on this, as I might find that I need to alter the theme of the blog if this doesn’t work out! Guest reviews would be most welcome too.
A visit to the dentist got me thinking again about what our medication does to us. I am pleased to report that the dentist was very impressed when I opened my mouth – no not to speak , he made sure that didn’t happen – but to see a set of filling free gnashers! Quite a feat at my grand old age as my kids remind me. Forget the dodgy back, bendy limbs, loose joints, malfunctioning bladder and pain, because my teeth are still ok!
In the heady days of my early career as a London staff nurse, when we both worked hard and played hard, I was introduced to red wine. I’d never really liked it before, but our medic friends Steve and Tina introduced us to a certain wine bar in Leicester Square – and Steve introduced Duncan to a single malt whisky club, least said about that the better!! The Cork & Bottle was a basement bistro style wine bar and was the only place in the early ’90s where a particular Aussie red wine was to be found. More than once the four of us drank them dry of our favourite and had to be thrown out when we outstayed our welcome. I have no idea if it is still there, but it holds some great memories.
But at times when it feels like there are few pleasures left, a tipple is called for – except for when it starts to taste DISGUSTING! My favourite red wine tasted foul – bitter and sediment like really cheap, student wine. What on earth was going on?? Did I ever remember to tell my patients that favourite food and drink might become unpalatable? In my head and neck days it went without saying, but I’m not sure that I really understood just how much my mouth, and my eyes for that matter, would change due to drugs. A drier, sore mouth with taste buds that could no longer taste – sweet food became a no, no and savoury food never had enough flavour.
My beautiful daughter stood up and gave a talk with this title at the end of last week. Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!). What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog. No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.
initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened. Hopefully it made them think for just a few minutes.
Today I think about the impact of hidden illness on body image and self esteem. The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted. On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list. Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure. Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often. To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!! But writing seriously, my own self worth has shifted significantly. I no longer feel like the person that I was supposed to be. Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??
PainPalsBlog 