Hospital Follow Up


I wasn’t really anxious about seeing the doctor but I wasn’t looking forward to it.  After sending him the update email and his very abrupt call I just felt that maybe our meeting wasn’t going to go all that well.  I had needed to change the planned hospital visit from Windsor to Slough as we were away for the original appointment, this can mean only one thing, the clinics never run on time.  We got to Wexham ten minutes early, the traffic was easy, so was parking and we checked in nice and promptly.  We waited and waited and waited.  I was called to have my weight checked after ten minutes we got all hopeful thinking we were going in, no such luck, I finally got in to see the doctor over 45 minutes after my appointment time.  It didn’t help I was tired after my sleepless night, or that I wasn’t looking forward to the appointment I suppose.

I shouldn’t have worried, Dr Mayadunne gave us a very warm welcome as he had the first time.  We ran through how I had been since our first meeting and had I experienced any syncope attacks.  I explained that I didn’t faint as I always take steps not to faint, I sit as soon as my vision darkens, or my hearing goes, I know my warning signs and I follow them.  I never let it get to the stage where I am on the floor.  The only time I have a real problem is when I have a Reflex Anoxic Seizure when I have no control over my blood pressure and I just don’t have the warnings. We discussed whether I felt the Ivabradine was doing any good, I admitted that my resting heart rate was much better, but as soon as I moved it started racing, I told him if I made any attempt to stand for longer than five minutes I would have a heart rate of 120-140 BPM.  This was a concern so he asked me if I would consider changing over to Midodrine, I have read peoples posts on forums about side effects on that drug and on of the main ones is a blinding headache.  Bearing in mind I live 24/7 with a headache I do not wish to exacerbate it.  So I discussed it with him, that I would not be happy to take a prescription for an expensive medication, that I would not be successful on.  I think he appreciated that I was aware of the drug cost.  So we agreed to try it out for two weeks.  I would stop Ivabradine, try Midodrine and see what happens, it might work, it might not.

In the meantime, he was trying to get the results from my 72 hour urine analysis, they were on “hold” at the microbiology unit for some reason.  He wanted them released immediately, however that didn’t seem to be possible during our appointment time.  I couldn’t work out why a test that I had completed back in May would be on hold for so long?  So Dr M said he would look into the results and let me know.

Then we discussed my cortisol levels, he admitted that they weren’t great, and he wanted me to have the Short Synacthen Test.  This is the test the hospital are objecting so much about.  So a second request has now been completed and submitted to the Medical Investigation Unit.  Let’s hope they listen this time because obviously he is concerned about something and with over six stones of weight lost, meaning I am now underweight on the BMI scale and the new adrenaline surges maybe there is something wrong with my adrenal system?

We talked about how much I am not getting out and about, but mentioned my new crutches, he was impressed with them.  Then we told him about the new wheelchair that was on order, explaining that the last twelve months had been a huge lifestyle change and I needed some quality of life back.  I think he actually got it at that point.  Then we agreed to meet again in a couple of months unless anything came up in the meantime, with a couple of handshakes the appointment was over, we had been in there for quite a while and it had gone really well I think.

So now it is a case of waiting for the appointment to come through for the SST, or shall I not hold my breath, because I think I may have a battle on my hands for that, considering I already have a letter from the chief executive of the trust telling me I can’t have it.  We will see!

Bad Nights

Sleepless nights are becoming a bit of a recurrence, last night was worse than usual.  We went to bed really early for us, I was so tired by 10pm I just wanted to sleep. Then following the usual routine, by the time I had pottered around done all the medications, got myself organised, I wasn’t really all that tired.  We still settled down by 10:30pm and I was soon listening to Andrew sleeping, I must have dropped off soon after.  However less than an hour later I was wide awake again, I was having the worst adrenaline rush ever.  I sat bolt upright and felt so panicked I didn’t know what to do with myself.  My heart was racing, I was dizzy and sweating, it wasn’t pleasant at all.  I didn’t want to wake Andrew he hadn’t felt well all day, and what could he do?  So I laid down again and tried to calm myself down, nothing helped it was such a strange sensation.  For hours I was literally in this state, my heart rate was all over the place and I couldn’t settle, I could hear the church bells toll every hour, then on the half hours.  It was the only way I was getting through the night.

By about 4am the birds had started and as it was beginning to get light, by then exhaustion took over and I must have dozed off for a very short while, within the next hour I was awake again listening to the church bells.  I know I had the hospital appointment today but I wasn’t “worried” about it particularly. This was me not feeling well at all, this felt more than a PoTs attack, and something that I hadn’t had before.

Again I must have slept for a bit because I had a really vivid and odd dream in the early hours of the morning, involving Andrew and F1, that woke me with a start.  I gave up with trying to sleep by then, it was time for tablets and getting organised for the hospital.

I haven’t had such a bad run of insomnia for a long time it’s been going on for weeks, it is horrifically draining, when you get no rest.  I’m not even sleeping in the daytime, deliberately, in an attempt to keep my body in the correct routine, however it doesn’t appear to be working.  Between the weight loss and the bags under my eyes I now look very unhealthy, goodness knows what the doctor will think!



When the letter dropped on the mat with an appointment in September, despite the consultant saying this was a matter of some urgency I did brush it off somewhat.  After all these months are rolling one into another and what could I do about it?  The NHS runs at it’s own speed and that is slow.  During a really broken nights sleep, this really does appear to be when I do my best thinking, it dawned on me that my Simplyhealth cover might be applicable.  After all this seems to be nothing to do with the PoTs and that is what I was diagnosed with, once it was known as a chronic condition they had to close the claim. I accepted that.

So after a very lazy, I mean rested, morning I got onto the claims line, with my GP’s referall letter to the GI consultant at Wexham and thought I might as well give it a go.  Now for a fleeting moment it worried me that I have just been “let go” at work maybe the policy would be terminated, however the policy is an annual one, so it appears I am still covered until the end of December this year.

I got through to a very helpful young man and explained the  full circumstances (poor chap) , that during my CT Angiogram they had noticed the duodenum issue and rushed me through a Gastroscopy, but with nothing showing on that now it was going to be a case of further investigations.  He just authorised there and then. maybe it was giving him the full circumstances he just wanted me of the phone lol, whatever the case I was super impressed.  I explained that a colonoscopy was expected and he said that wouldn’t be problem, I would just need to call after the first consultation and give the procedure number, they would then add it to this claim.  As simple as that, he asked if there was anything else I needed help with, I explained he had been brilliant, and we ended our call.

Next call to the private hospital which the consultant worked from, I was connected to the consultant’s secretary, another brief explantation about the NHS wait and what I was trying to do.  No problem, a few details taken, authorisation number passed across, and that was it the appointment booked, for next Monday evening. WOW !!  In the space of fifteen minutes I had just saved eight weeks of stress and worry, and sped up the whole process.

So once again thank you Simplyhealth for just being there when I need to get things sorted.

Positive Posts

Last week on Facebook a good friend over in Australia nominated me to write three positive posts for five days.  Now I thought this would be extremely difficult and on day one I sat there for a good half an hour deliberating on what I should write.  However it really didn’t matter.

Every day there was something to be positive about, as a chronically ill person, just getting out of bed can be a real major achievement and taken as a positive.  So every day for five days i thought long and hard, I was positive and thankful for the good things that were happening last week.  Doctors appointments that were going well, getting paper work in order at home and ultimately just being positive and grateful for the love of those closest around you.  It is all to easy to became complacent that they are there doing what they do, and relying on them, just expecting them to be there.  One day they might not be, they might get sick of being there, fed up of being a carer.  So saying thank you, and recognising their support needs to be done.

Thursday I was thrilled when my new crutches arrived and that was a huge positive day for me and when I realised that it was my penultimate post i was a little sad that it was nearly over too.  How could something that had initially daunted me now be leaving me feeling me a bit empty that it was over.

Friday night I thought of my final three and finished off my positive posts, it had been a nice thing to do, I’m not saying there hadn’t been negative things going on, there had but when you concentrate on the good things, somehow the bad don’t weigh so heavily on your shoulders.

Occasionally I will pop a positive occurrence as a status update, because Facebook and twitter doesn’t have to be all doom and gloom, but finally chronic illness has shown me that I can put up a fight and some good can come out of it all.  I just need to seek out the positive, it is in there somewhere 🙂


Step in the Right Direction

Yesterday two letters dropped on the mat, one was a confirmation of my appointment next week.  For some reason following our rather abrupt phone call a few weeks ago I really am not looking forward to seeing him again, which is a real shame, because our first meeting went really well.  He was the doctor who spent an hour taking such great care with me, and made me feel really well looked after, that to now feel the way I do, is a bit disappointing.  I will go along and try and put these feelings to one side and see how it goes.  He must understand it is only natural for me to worry, I am not getting better, my weight is dropping on a weekly basis, I am now on the underweight line on the BMI scale.  So that is a concern surely?  Mealtimes are a real challenge in our house, I eat only because all eyes are on me and Andrew gets frustrated if I don’t eat, but the pain it causes is unbearable.

The PoTs symptoms need to be addressed, I don’t feel happy with the Ivabradine, having been on it since November, there isn’t enough of an improvement to say it is working.  My heart is slower at rest, but if I stand for longer than five minutes, my heart will be beating at over 100 beats a minute, and that is just standing up, not even walking.  If I start moving around, up the stairs, then we are looking in the region of 130+  So we need to consider what the hell is going on with my PoTs symptoms.

I finally got a copy of my Hypermobility diagnosis so at least I can take that to him, and we can discuss that, the EDS/HMS go hand in hand with PoTs it will be good to get all the specialities working together.  I know I am living in a dream world hoping for that, but I will keep fighting to get my healthcare working the way I want it working.

The second letter was telling me I had an appointment to see a GI doctor, I was totally thrown as there was no way my GP had managed to arrange this that quickly seeing I only saw him on Monday, he is good but not that good!  Anyway I was unable to make the appointment so called to change it.  After a few failed options it appears they have to put you through to the consultants secretary.  I got transferred to a lovely lady who explained that the A&E consultant  that I saw just before we went away had referred me, that explains it 🙂  I told her I was unable to attend the appointment and why the referral had been made, basically that I was needing an urgent Colonoscopy.  Her recommendation was to discuss with my PoTs doctor next week, to speed up the process and get him to request the procedure.  They know all the short cuts, then should there be anything found, an urgent appointment would be made, i.e. I would queue jump.  So thats the plan as far as the hospital.

No sooner had I got off the phone feeling accomplished then it rang again, this time it was the occupational therapist.  The second time this week they had called me, she wanted to fill in a few gaps on the questionnaire that had been completed earlier in the week.  So we chatted easily for about quarter of an hour and she was lovely, she talked about how I wouldn’t be forced out of my home, which was very reassuring.  Then explained how they would try and get me as much help as possible to give me back some quality of life.  I explained how hard the last twelve months had been.  Being house and bed bound had really driven me bonkers.  We talked about adapting the house so I could get up and down the stairs, because bottom shuffling is hard when there is no “meat on your bones” and she agreed that it was just wrong.  So I am now classed as a crisis case and should be reviewed within 2-3 weeks, which is amazing.  I was told months and now it is going to be weeks.  It appears there are people out there to help us, we just didn’t know where.  I told her about my new wheelchair coming and she said that was fantastic.  So at the moment everything is taking a step in the right direction.

So now all i am waiting for is the call from the Wheelchair company to say it is here and I will be sorted … until then I’m feeling a little bit tired, I appear to have run out of spoons, can anyone lend me some of theirs?

Fun Days Out this Summer

It can be incredibly difficult to plan activities and trips to keep the children entertained during the summer holidays. Six weeks is a long time to be away from school, and with holidays abroad being so expensive, parents often have to search for things a little closer to home to keep their kids from saying those excruciating words, ‘I’m bored!’. While you will often be able to keep them occupied around the home, or at least locally, booking a city break or a trip into the countryside can help to break up their time at home and make it more pleasant an experience.

While escaping to the country can bring you and your family closer to nature, a city break can be just as wholesome an experience. Enjoying a couple of days in Birmingham will allow you and the children to enjoy a whole host of activities and family-friendly attractions, and summer is just the time to do it! Book your family into one of the family rooms that can be booked via the Travelodge website ( and enjoy a stay in the city without breaking the bank. After all, the less you spend on accommodation, the more money you have to enjoy these fantastic attractions!



Birmingham is home to the flagship aquarium, which is home to sea turtles, sharks, penguins and more. Wander through the glass tunnel, say hello to the penguins and immerse yourself in this underwater paradise.

Cadbury World


Perfect for the chocoholics, Cadbury World continues to be a big hit with kids from all over the country. The renowned chocolatiers have excelled themselves with this fun attraction, which delves deeper into the world of chocolate while also giving visitors the chance to enjoy a 4D adventure, that’s new for 2014.


Home to ten themed galleries, with an abundance of interactive objects and displays within them, Thinktank is a science museum like no other. Have oodles of fun at this superb museum and science garden, which will leave kids wanting to learn even more.

Warwick Castle

With over a thousand years of history, Warwick Castle is one of the most visitor-centred castles in the country. It makes learning about history as fun as it possible can, and with Horrible Histories within its walls until the 31st August, and the chance of a glamp, medieval style, it’s much more than just a castle!

Go Ape

Perfect for your cheeky monkeys, Go Ape is a fantastic way to spend a day in the great outdoors. It’s considered to be the number one forest adventure, and can be found at Cannock Chase and Wyre Forest, which are both within easy access of Birmingham – particularly if you have a car with you. From zip wires and high rope courses to swings and cargo nets, Go Ape is full of adrenaline-rich obstacles that will test your mettle for sure!

Also within easy access of Birmingham are attractions such as Twycross Zoo, Dudley Zoological Gardens and the Black Country Living Museum. Whatever you fancy getting up to with the kids this summer, Birmingham is home to some sensational options to suit all ages.

Hopefully keeping the children occupied for the next few weeks won’t be too difficult. Enjoy your fun days out this summer !!

Smart Crutches

So after much deliberating I finally bit the bullet and ordered a set. I had read reviews and seen so many other Ehlers-Danlos sufferers say good things, that I was really getting a little bit jealous of these amazing crutches.

The last straw was a few days ago I kept cracking my elbows and wrists, on the standard issue crutches, and having done it for the tenth time on Tuesday I just got fed up. I clicked online and that was it, not only did I get them at the offer price of £79 with free delivery but I was able to claim the VAT back. As are all people who suffer with chronic illness or disabilities.

The colour choice wasn’t difficult for me, but they have a glorious range to choose from. So once the order was placed the first of the emails started to arrive, first the confirmation of the order, then confirming payment. It was all very efficient. I was so excited I updated my twitter to let the smartcrutchuk team know. The next morning a flurry of emails, my parcel had been dispatched along with the tracking number being issued to me so I could monitor my delivery. They also sent me a receipt of my order and a refund for the VAT portion. I was so impressed by the whole process.

Less than two days later look what arrived


It took minutes to set them up for my height and yes it will take time to get used to, but if can already feel am improvement.

I am no longer putting pressure fully through my wrists and elbows. I feel like it is being evenly distributed down my forearm, I am standing straighter and just feel better. It’s going to be a case of taking it steady but I am happy with them already.

I will review them more in depth when I have used them more but for now, so far so good. Their customer service, including delivery is excellent. To all EDS sufferers reading this get yourself a set !!


The Gallery – Animals

This weeks gallery topic is one that is close to my heart, it’s animals.  Now as you  know I adore my two cats, I am the crazy cat lady and my phone is chock-a-block full of photographs of both of them.   However picking just one of each of them is really hard.  They are such gorgeous girls and each have their own characters.


Let’s take Cassie, we rescued her two years ago, at the time she was a year old and had just delivered three kittens.  She didn’t like them much and they had to be taken away and hand reared.  We bought her home and she settled right in,  she isn’t a lap cat sadly but she does like the occasional fuss.  We absolutely adore her and spoil her at every opportunity.


A year later we got Tiger-Lilly, or Lilly as we call her. She is very kitten like still maybe because she is part Burmese and an absolute lunatic.  As I told you last Friday she fell out of Katie’s bedroom window so she is always doing something daft.  She is Katie’s cat, and when we got her was an indoor cat but since learning to use the cat flap tends not to be inside much, always running around chasing and trying to catch something.

They are fab pets, and with me being housebound they are often in and out and come to check up on me.  If I’m not too good Cassie always stays close to me, knowing I need company.  I’m a real cat person and wouldn’t be without one in the house anymore.  Prior to these two we had Tizzy for 17 years and after him we rescued Bonnie, sadly she was only with us for 4 months as she was diagnosed with Lymphoma.


There is one other animal that I have a real affinity to, the Zebra, all complicated medical patients, including Ehlers-Danlos suffers are known as medical zebras, I can hear you asking why the zebra so here is the extract from the Ehlers-Danlos website explaining.  I am sure it is on my blog somewhere but it will save you hunting around for it.

Why the Zebra?

“When you hear the sound of hooves, think horses, not zebras.”

This phrase is taught to medical students throughout their training.

In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.

But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos Syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.

So when we were at the Safari Park last week in France and I had the opportunity to see two Zebra’s I was not willing to miss that chance, like I said it what doesn’t kill me makes me stronger.  So I hobbled all the way round until I found my stripy friends and what a sight to behold.  They were majestic and beautiful i was in awe to stand this close,  I actually took this photo and I am pleased seeing I am very new to photography.


So there you have it my three favourite animals.

Sticky Fingers Photo Gallery

Getting Organised

So with all those letters opened, I had a bit of an admin type day.  Lots of emails to write, calls to make and just paperwork to sort.  The positive of this is, I can take it nice and steady, the negative is with brain fog, I end up cross eyed and really frustrated.

First off I wanted to respond to my employer, to really acknowledge the letter and say I accepted the terms, because whether I wanted to put up a fight or not, I can’t.  So with another heavy heart, much like the one when I had to give up being a Special Constable I wrote an email thanking her for the letter.  Saying I understood the decision and would fully accept their terms of  the termination of my employment.  By the time I finished writing there was a tear rolling down my cheek, another part of my financial independence gone.  If the DWP ever question me or fight me about me wanting to be on benefits I may scream, I would 100% much rather be sitting at my desk in the Studios earning my healthy salary, than having their measly handouts!

While we had been away I’d also receive the top up form for the housing/council tax benefit, so that needed completing, it was really simple, as they had all the evidence from the original forms, so that took only a few minutes.  It was soon in it’s envelope ready for sending back, any supporting documents, I scanned ready to email, to my contact at the Council, I wasn’t willing to post those.

I also needed to sign off my sick note and pop that in the pre-paid envelope, wow I was getting organised today!!

Next up was the paperwork for our upcoming trip later this year, I haven’t mentioned where we are travelling to yet.  Andrew and I both love motor racing and for Andrew’s 40th birthday a few years ago I paid for him to go and see the Malaysian Grand Prix,  as he didn’t go to Silverstone this year, we decided we would go to Singapore for the Grand Prix, obviously this was before my health took a major decline.  However now I have a super duper wheelchair coming we see no reason that I am not able to travel, why should my disability stop me?  There is one problem though my medicines, Singapore have very strict rules for the importing of codeine and morphine based drugs which I used on a daily basis.  I therefore have to apply for various licences to take enough medication for me to use the drugs whilst I am there.  Should I not apply for the correct paperwork I am liable for arrest if I am found in possession of these drugs.  So it took me four hours to complete the paperwork, the supporting documentation, including my passport, our itinerary and just double checking everything was correct.  I have given myself a two month window to make sure I have enough time to get this paperwork in place.

Andrew popped home just as I was finishing off this paperwork and I was really stressed out, pain levels were high and I was ready to flip out.  A few clicks later and it was winging its way to the health services authority, hopefully in a few weeks I will have the licence.  He ate his lunch and we chatted, I needed him to post a couple of items and with that was that off he went.

As I went into the kitchen using my crutches I cracked my elbow again for about the tenth time, and just lost my patience, so I immediately sat back down, logged onto the website and decided there and then today was the day I was going to buy a set,  I’d had enough of the pain the standard issue were causing me.  I know I am getting my wheelchair soon, but I will still use crutches around the house, and on short journeys, so new crutches were a given.  I have gone for the pink ones, and I can not wait for them to get here.  I am so excited !!


Final job of the day was the cat insurance, after Lilly falling out the window, I knew the policy was running out this week.  So with that in mind I had already got quotes in place.  A couple of clicks later and it was all sorted, both cats insured, pretty much for the cost of one cat last year.  So I am saving money as well.

I’d run out of spoons, I’d managed to do all this from the comfort of the sofa however my head is spinning and my brain is saying no more please!!  So with a blog post written that’s it for today, today is the day I got organised, well sort of, now I need to file all the paperwork, oh goodness me it is never ending 😦