Another week has flown by and here we are in the UK at May bank holiday & half term. Where is this year going? I have had 2 medical appointments this week and each of these have led to even more. The first was my monthly visit to the GP and I actually owned up to
the pain in my right hip that has got increasingly worse since it “popped” sideways – subluxed to those in the know – a couple of weeks ago. Rather unfortunate as this is my “good” hip!! The pain is completely different to the nerve pain and definitely EDS induced – it is deep in the front hip crease and at its worse on walking, to the point of literally taking my breathe away. Or that could be because my hip gives way and I fall over!!
So a referral is in the post for 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!
Another couple of referrals and I will have stamps in my book for consultations with every body system. Nearly a professional patient. Something that did make me laugh is that the lovely doctor told me that I must lie down immediately when I feel the aura of a dizzy spell/faint coming on – not sure how this will be received in the aisles of M&S.
We managed a trip to our book club this week – we meet in the pub, so Duncan isn’t going to miss this easily – and I have also been lucky to join The Book Club (TBC) on facebook. For those of us who have “bad” days, reading can be a huge part of our lives from comfort to distraction to enjoyment. 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.
We have a trip to Exeter later in the week for Olly to visit the university open day – Lucy and I plan a day shopping, but she is getting concerned in case I have a fall. I did suggest borrowing a wheelchair – I know that I can’t walk very far and I have a feeling that Exeter is hilly – but I’m not sure that she fancies pushing her mum……to be continued!
5 thoughts on “Referrals, P.O.T.S & Books”
They should have put it all in the umbrella of Chronic Fatigue for you as I am sure, like me, the umbrella has a lot of the same things we are both going through. I was diagnosed with CF and Fibromyalgia, Scoliosis, Osgood Schlachter and micro tears of my ACL by age 15. I blister and my skin never toughens. In running I would run a 420 mile and 6 other events in one day and on a similar day I would fail miserably at everything. I start carb loading, nope Hypoglycemia, hear rates that go into the 240s. I can go on. The POTS diagnosis, for the second time was 2 years ago and said the same they all fall into CFS. Yay for us, we get more prizes today. I am doing a Nuclear Pet Scan Friday after a halter Thursday. Mind you, it is 7 miles each way on bike and I have to hope for nice weather.
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Hope the scan goes ok, and that your weather is better than the awful cold & rain we are having in the UK – like winter again, and the kids are on holiday!! Def feel like I have chronic fatigue some days even if not officially….don’t s’pose cardiology appt will be any time soon, but we’ll see!
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I have them calling 3xs a day. How many MRIs did you have? Some people just have two spinal and a thoracic may be needed especially for us sufferers. I am cramping up terribly but I did a lot to warrant it. I have two back to back Cardio dates, added is the ortho and I have another procedure. It never ends. ut it is keeping me busy. If that is a good thing.
I’m a part of Netgalley and I love it. It’s basically just requesting ebooks, reading them, and reviewing them on sites like Amazon, Goodreads, etc.
The POTS for me was damaging until a cardiologist put me on a beta blocker and it has been a HUGE help.
I have just been approved for so many books that my husband can’t stop laughing!!
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