Back to Kings

Having been once to Kings and found it quite useful, I was actually looking forward to this appointment.  However I wasn’t looking forward to the journey after our awful trip in the week before.  This appointment was at 3pm so I was hoping that it would be easier, I said I would go in alone, Andrew wouldn’t hear of it, he insisted on taking me, he didn’t want me stressed for this type of appointment.

Ultimately it was a good thing he did, the traffic was kind but we didn’t get a parking space, so I got out and went for my appointment and Andrew went off and got himself some lunch and then came back to pick me up when I was finished.

My physio is great, Sarah, she chats about how I am doing generally, then how I have got on with the exercises. She noted that my rib cage is excessively flexibly hence the pain I get, so i shouldn’t take to deep a breath when I feel the need, I need to shallow breath now I know I have this problem.  It is so helpful to know about these problems, otherwise they go missed and I do think there is something more seriously wrong.

She gave me some new exercises and then asked to see me in six weeks time, she is a positive influence on my PoTs rehab, which is a good thing 🙂

CT Scan @ Kings

We knew it would be an early start with an appointment time of 10.30am, so we headed off at 8am in the hope we would make good time.  You can imagine my frustration when we were still not in London after an hour and this was our view.

We asked for a new route on the sat nav and it sent us a really weird way but it would get us to the hospital with a few minutes to spare, this was our only hope.  We headed off on the new route, wondered where it was taking us but thinking we were going a really long way round, oh well, they would  just have to scan me late !!

As it was the route made good time and we got there with ten minutes to spare, then the task to get parked, I found a lovely parking attendant and asked her and she confirmed we could park on any double yellow, not just the disabled bays, so we abandoned the car and dashed in.  As you can imagine the scanning department was busy, so I was kept waiting, then I was sent to the downstairs department as they were too busy.  Once there I was handed the form and asked to complete it, I was taken through and my scan done.

Five mins later I was out again but it was all a fuss, all the staff were buzzing about Elton John was in the building and they wanted to see him, I just wanted to get out.  As we got to the car I said to Andrew I fancy a donut he said no trouble we shall go and find you some and that is just what he did, my knight in shining armour went hunting for my treat.

We made it safely out of London just after lunchtime and I got my Krispy Kreme donuts, i was a happy girl 🙂 xx

Nashville Nights

We deliberately came back from holiday for this night out, it is a UK Country Music, club based night that travels around the UK and is highly successful.  We had missed the first London based one so when the second one was announced we knew we wanted to attend, it did sort of mean cutting the holiday short but a week was sort of enough?

The night is based in the club called “Under the Bridge” which is under Chelsea Football Club, it is quite a large venue, I hadn’t been before and was really impressed with the layout. We met up with some really good friends and found a booth and that was our base for the night.

The night was also the EP launch for the lovely Liv Austin, so we had a great performance from her and her band, the stage set up was excellent too, much better than most of the London clubs that we go to.  Then it was time for our DJ for the night Baylen Leonard, who is a Radio London/Radio Two DJ from the USA so his forte is country music!!  He really did get the crowd jumping and I loved every moment, I danced like no one was watching as the saying goes …. I knew my body would hate me the next few days but I didn’t care I was having fun with my friends and that was what mattered .

All too soon the end of the night came and it was time to head home, now sadly we can’t make the next couple of events due to other commitments but if you can go, do head along, I highly recommend this, if you like country music and love a dance, this is your kind of night out, Nashville Nights, the only place where you can dance your socks off to country music all night long 🙂 xx

Natural Pain Relief

Prior to going away I had been to the Stanmore hospital, they had carried out a blood test and a letter was sent to my doctors, my Vitamin D level was sitting at 55 and I was difficient.  My GP contacted me and stated that he was unsure what scale she was referring to and he would like to test me, knowing I had just been away I was interest as to what my new score would be.

I walked up to the surgery using just my crutches and the Doctor was a little shocked, I explained about the holiday and how the effects of the warmth and the sun had still not left as yet, in fact the weather was still warm in the UK which helped.  My blood test was carried out and after a week in Santorini my Vitamin D level had gone up to 59, so that was a positive, in Buckinghamshire, they do not prescribe for that level, so the Doctor was happy to let it go on this occasion.

However we did discuss how I had managed whilst away, yes I had struggled with PoTs issues, high heart rate and low blood pressure but the pain problems had lessened straight away.  That is what i find so frustrating about living in the UK with this condition, the minute I get to Florida, Santorini, my pain levels in my joints diminish and I can suddenly reduce my pain relief by 100% in a week.  Now my headache doesn’t go but it does reduce to a manageable 5/6 on the pain scale, not the 7/8’s that I suffer with when i am at home.

It is a tough one, our lives are here, Andrew’s work is here but my health is better elsewhere, what are we to do?  Life has proved there is a natural pain reliever, it is just a case of how do we go about using it?

The Honeymoon Isle

That is how the Island is described and with views like this is it any wonder, in fact not far from where we were standing was one of the islands top wedding venues.

And brides flocking there to get married I can see why it has that nickname, it really did grab at my heart.  From night one, we took to the Greek way of life, strolling up and down the beachfront, the restauranteurs trying to encourage us to eat in their establishments, rather than their next door neighbours, it all became banter up and down the streets in Kamari.  It was so lovely in early May to be wandering in summer clothes and sitting outside eating the freshest of seafood, Andrew enjoying a Mythos and I partook in the Santorini wine, which they specialise in.

We enjoyed mornings by the pool, which was a real sun trap and with bar service, meant we could have the laziest of days if we so wished.  However I have the fidgietiest husband so having a car meant we went and explored the island, to stop his boredom levels, we viewed the most amazing sunsets at Oia, the hilliest streets in Fira, along with a beautiful Catholic Catherdal, we scaled the windiest road on the island which just so happened to be behind our hotel, to take us up to Ancient Thira.  One day whilst exploring we found a young American couple hitch-hiking, they had been wine tasting, so we agreed to take them back to where they needed to go.  We were heading in that sort of direction, after a lengthy chat we dropped them in Perrisa and then made our way towards a tiny little port. We wander around looking at the boats, watching the fishermen mending their nets, we went onto the beach and the tide caught me out and my shoes ended up soaked, all part of the fun!!  Andrew did catch the moment on camera, he says the shock on my face says it all, I haven’t seen the picture yet!  No two days were the same, it was a huge adventure, we decided to pay on our penultimate day to go on a boat trip, to scale the volcano, visit the small island and then see the sunset at Oia again.  It was a pretty special day and one that won’t be forgotten, climbing the hill with the donkeys at Oia in the hope that they wouldn’t trample us!!  Then finding a bar to have a drink.  We ended up in the most amazing restaurant and had a meal, watched the sunset, before heading back to Kamari.

That was our last night, however during all this, we also managed to eat in our restaurant and befriend the bar manager Petros, the staff there were fantastic, the chef found out I had a new found love for baklava so made it especially for me, he even provided me some to bring home to the UK.

The whole trip was a memorable one and it was so special we hope to return in September, the island really had a major impact on me, to travel such a short distance and have such a great holiday was fantastic, so we will be back Santorini, thank you for having us xx

Santorini here we come

As we had left it so late to book, there was really no time to get excited, most of the time that was left was spent getting organised.  Sorting out who was going to pop in to check up on the cat’s (Katie) picking up the currency, getting the luggage out of the loft and then packing, which in Andrew’s case only takes 20 minutes, he quite proudly boasts about!!

The night before we had to make sure that everything at the shop was ship shape and organised, all the rubbish was taken for recycling, the carpets hoovered and Andrew’s desk cleared, the only hope was it would be the same on our return.  Things have changed so much over the last twelve months, and some of it we needed to get a tighter reign over but going away meant we could talk things over and work out what we wanted for OUR future.

The morning of our flight and Katie and her man arrived and took us to the airport, I was excited, as for the first time ever, we were leaving from Terminal Five.  We checked in and then headed off to get Andrew a nice breakfast, we never take for granted that his customer can look after us on flights, so we make sure we have adequate sustenance prior to boarding.  We found a great restaurant called “Pilots” and ordered, it was nice to feel the sense of calm already rushing over us both.  We finished our food and headed to the gate, which was a train ride away, I never knew T5 was that large and by the time we got there, they were already pre-boarding.  I slowly made my way onto the plane and we were approached by the purser who introduced herself and said the Captain would be out once we were in the air, she then moved us into our Club seats and made us as comfortable as possible.

The flight was amazing, once you have been given a free upgrade, I for one never take the mickey, yes I like to have a bottle of champers, after all I am on holiday but when they offer me the menu, I always say just bring me what is left, let the fare payers have the first choice, the staff appreciate that.  I never bother them too much and I always tweet my thanks, naming the staff and flight number, so they get a pat on the back from BA.  It is the little things after all.  We made it to Santorini in under four hours and when they opened the doors, the heat hit us, the biggest shock was, I had to walk down stairs, oh well the whole plane would have to wait for me !!  So the Captain helped me down the stairs, guiding me step by step, what a gentleman, we shook hands and I thanked him for his hospitality.  Then the 1970’s throwback airport, Santorini is stuck in a time warp, it is very charming though.  The one security guard checks your passport and lets you into the Island. they then crank up the baggage reclaim and eventually our cases arrived.

We had booked a car for the week, so the doors to arrivals opened and there were four desks, we asked the young lady if by chance she was the company we were looking for and as luck would have it she was, we collected our VW Beetle Convertible and off we went in search of Kamari and our hotel.  This really was going to be an adventure.  For people who are generally so stuck in their ways, heading to the USA twice a year, to the same resort, we were well out of our comfort zone but it was fun and exhilarating.

The little map helped us as best it could until we got to Kamari and nobody had heard of the hotel, I them realised from the pictures I had seen on Trip Advisor roughly where it should be and we happened upon it by chance.

We had been so lucky with this holiday so far a great flight, the car was fun and the hotel was beautiful with amazing views.  Now we had to just make some wonderful memories xx

Getting Away from It All

Not often a week opens up in Andrew’s calendar and when it does I look with excitement at what we can do, where we can go.  My dream destination is the Maldives, I have never made any secret about it, the clear seas, the sandy beaches, the luxury and the heat …. Just that pain reliever of heat, that is what I was craving more than anything in the world.  When Andrew said it was “out of the question” not really about the cost, more about the long journey for only a week’s stay, I understood where he was coming from.  So my question for a travel destination began.

I have a friend who has travelled far and wide, round the world on more than one occasion and I turned to her, she has been to the Maldives and I asked that she advise me.  If i couldn’t go to there, what would be her second choice?  She gave me three suggestions and one of them popped out to me, Santorini, I have seen the picture used on Expedia’s page of the little blue domed churches and it looks idyllic.  So my challenge was on, i had less than a week to locate and book a holiday for the two of us.  I started online and was getting nowhere fast, the pricing to get to this little Greek Island was crazy !! Plus with connections it would be quicker for us to go to The Maldives, so I then found out BA flew there, handy, I checked LHR to Santorini, but wow they were really expensive.  I have a travel agent friend so thought I could ask if she knew of any deals.  Sadly she was on a training course, time was running out.  So I messaged another friend who worked for BA and asked if she could look at prices for us, or this break wouldn’t be happening after all.

She messaged me back with an amazing price and that evening popped round for a cuppa and we booked not only the flights, we ended up booking a hotel too.  So thank you BA (and Jo xx)  I heaved a sigh of relief with only five days to go I had done it, flights, hotel and now car sorted, next money, tick did that.  I was getting there, slowly bit by bit everything was done.

The final piece of the puzzle was when Andrew’s customer heard we were travelling and then asked for our flight details, of course, the pilots on both legs of the flights ensured we were made “much more comfortable” which made all the difference to my hips and back, so BA really did look after us this time.  I will tell you all about the holiday over the next few posts though because Santorini is stunning, if you get a chance GO !!

Dixie Chicks

I had bought the tickets nearly a year ago when they were first announce as returning to the UK, to try and sell out the O2 though wouldn’t that be a bit hopeful?

We had last been at the O2 for C2C and it had been so cold, so to travel up in early May, with the warmer weather was nice.  Not being wrapped up under coats and blankets, shivering and actually struggling to enjoy the venue, made the atmosphere even more fun.  It was good to see the place full of cowboy boots and hats again and it felt like a pilgrimage again.

We needed to get food, so headed round to the Brooklyn Bowl, where we had spent many a late night.  It was one of the only venues were we could get a table and despite quite a long wait for our food, once it came out it was delicious.  We ate and then headed off to the arena, knowing the support act were already playing and most of our friends would be in there.

I think we heard the last few songs of the support act “Americana’ and from what I heard I really enjoyed.  The lights came up and this gave us a chance to say hi to everyone we hadn’t seen before the show, it was a reunion from March and our Country Music Family was back together again.

Then soon the Chicks took to the stage, now we had seen on social media bits about their shows but OMG to actually “SEE” their show was just incredible.  They sang their hearts out, the GWB hiccup of a few years ago almost forgotten until they put political cartoon type figures in their video screen, that was so funny, the ticker tape parade, the light show was just something else it blew us away.  I didn’t know that much Dixie Chicks music but I left there a complete convert, I loved every second, their energy just oozed off the stage and by the time they finished I felt fully charged and wanting more.

Sadly we had to head out with the main crowd this time as we had used the Tube, we dumped our car at Westminster and got the underground from there, finding step free access stations on one route and it worked.  Multiple lifts but it worked quite well, it meant Andrew wasn’t stressed with London traffic through the City or Greenwich and we made it out in good time!

So we loved the DC’s and had a great night, the bonus was it was bank holiday the next day so we got to enjoy a lovely lazy day off.

My Urology Appointment

Thankfully my first Urology appointment was at our lovely little “cottage” hospital in Maidenhead.  Sadly Andrew had got himself too busy to attend, so my daughter came to hold my hand, I wasn’t too nervous to be honest, after all I had only gone into retention once and fingers crossed it wouldn’t happen again.

Primarily I hate sitting outside these types of clinic rooms though and being the youngest there, all the old dears, look you up and down, wondering what on earth you are doing there and I just felt out of place at “their” clinic.  I was taken off for my obligatory weight check and it was still hanging around the 8 stone mark, so I had lost 3lb since my Gastrointestinal appointment.  Katie and I chatted easily catching up on what had been going on in her life recently, we hadn’t seen much of one another, so this was quite nice spending some time together.

After a short wait I was taken in to see the Consultant, my daughter declined to come in with me, feeling it was a little too personal, I didn’t mind however.  He asked me about what had happened in the January, so I explained about Andrew’s back going that my carer had suddenly needed care, that maybe the stress had triggered this?  His concern was it could be part and parcel of my GI issues and was obviously linked to my Ehlers-Danlos, he stated that immediately they would be scanning my pelvis to check all the organs and my kidneys, to ensure they were ok.  He wanted my doctors to perform a blood test to check for kidney function levels.  Finally he asked if he could pass my file to his colleague who was a specialist Neuro-Urologist, who dealt with people like me, complex cases.  He felt I would be outside his remit and he didn’t want to waste MY time by keep seeing me, when he knew there was a better doctor more suited for my care!

I agreed immediately, he felt Mr Omar may well already know about EDS, he deals with MS, Parkinson’s and all other types of Neurological issues, bearing in mind I already have Neurological care this would be the best option and he may well have a hotline to the EDS specialist Mr Khullar, who is base at St Mary’s in Paddington.

So less than ten minutes after I walked in the door, I was leaving, I was super impressed, he was knowledgable, kind and efficient.  He didn’t waste my time and he spoke to me like a intelligent human being not like I was an idiot, far too often people talk down to me, this time I felt like I had been really consulted.

The scan is booked for mid June and Mr Omar’s waiting list is quite long I have been warned, but I have waited on longer I am sure.

I like good hospital appointments !!

Keeping Up

I struggle to keep up the momentum of this blog and for readers it must be hard, wondering what is going on in my world.  Am I “all ok” now or am I so ill that I can’t type.  It is often a case that I am floundering around and just don’t have the mental capacity to sit and write a blog as well as try and cope with the tons of hospital appointments, plus standard day to day living which I am trying my hardest to get back to.

I often used the FB forum’s as a source of support but began to realise that it had also become a competition ground of who could be the sickest person within the group, it was as if, the less severe your symptoms, the less attention was paid to you, I could post a question and on occasions it would be ignore and an admin would have to “bump” it as I was not in the “sickly” clique.  When I was at my lowest I found this really isolating, so I started to withdraw from the groups, I decided I would remain a member as often the could come up with useful advice or ideas BUT for medical support I would only use my GP.  I will sometimes respond to other peoples questions or statements but I have given up starting threads, it makes me feel venerable.

Then there was my follow up appointment with my EDS Consultant, at which time the admission was that nothing further could be done for my condition and only inpatient rehab would be offered.  Now I am not a fan of staying away from home, so this was met with real disappointment that in this day and age, they could do no more for me, than send me away!!  So I decided I needed to take control of my life, Dr Gall had already stated I had needed to mobilise more and I felt this was something I could do at home without the interference of a hospital ward.  It has taken me a number of weeks but I am using my wheelchair less and less, I use my crutches and I have just got a “Fitbit” to monitor my health to see how my Heartrate is coping with any exercise, and with even just standing.  So far so good, it does mean I am learn how to pace but I am not an idiot, if I can bring up three children and drive a car, run a business with my husband, I can teach myself how to pace my rehab from this awful illness.

There will be plenty of blog post detailing what has gone on over the last few weeks, the appointments, the holiday to Santorini, the awful Migraine and a whole lot more but whilst I may be struggling to keep up on the blog I feel I am doing ok in life, I have the support of Andrew, and we will get back to some kind of normal whatever that may be.

Keep reading, I will be back (as Arnie said) xx