More Tests at the Royal London

It’s three weeks since my last appointment and I’ve just about got over the thought of that awful experience.  However as soon as we started heading back up to the hospital it started running through my mind again.  I knew today wasn’t going to be invasive so I wasn’t at all worried, in fact unless there was a dramatic change of plan by the Professor this is the final test.

  
We got to the Gastro Phsyiology clinic over 4o minutes early but they kindly called us in early, it was the same nurse who had looked after me last time, it’s always nice to see a familiar face.  She ran through the process and it all seemed fairly simple.

I hadn’t eaten for over fourteen hours, so I would be given a sugary syrup (in this case lactulose), I confirmed I had taken no antibiotics in the last month, I would then blow into the machine to get a baseline reading, if that registered over 10 then I would need to wash my mouth with listerine.  My baseline was 5 which was good.  I took the syrup and a cup of water and that was it, measurements needed to be taken every 15 minutes for two hours.

The machine itself is a bit like a breathalyser machine, you just blow into it and it gives a reading.  Now the nurse explained within the first 45 minutes if your reading goes above 10 that would indicate a bacterial overgrowth in the small intestine.  So my first three readings were all 5’s, the next few were 7’s then I went up to 13 and the last two were 38 and 51!  Throughout this I was in agony. I felt nauseous and had terrible stomach cramps, I just wanted to curl into a ball but I needed to get this test done. Plus we had plans for our evening.

  
Finally when it was all over and the nurse came back in I was excited to show her the sheet I thought that was it they had found the cause of my illness, but she explained that was normal, the high numbers at the end mean the same as everyone else I have good bacteria in my large intestine, as we are all meant to.  This was a negative result basically, I was crestfallen.
I told her the date I was seeing Professor Aziz and she assured me all the reports for all three tests would be available for him by them.  We got back to the car and headed into London.  Andrew had a meeting which he needed to attend and then for the first time ever my illness beat me, I wasn’t well enough to attend the concert we purchased tickets for.  So we went straight home, I curled up with a hot water bottle and some oramorph.  Feeling very low, I will be glad when we get some decisions because I think the not knowing is the worst part now, I can’t gain weight, I don’t know what’s wrong with me apart from my EDS, I just need answers, fingers crossed we can get some.

Friday Night

This post is late in the day as I’ve spent most of it traveling into and out of London for more gastric tests.  I will explain more tomorrow.  I just wanted to touch base with you and hope you all had a good day and were looking forward to a nice long weekend with your friends or families.

Keep your eyes out for blog posts, I’m in a bad flare so will work on doing some publishing but can’t promise anything depends on pain levels, thank goodness for oramorph 🙂

Anyway enough rambling time to get some rest, sleep well, my lovely readers x

   

My New GP Practice

As it has been EDS awareness month I haven’t really been updating you with my situation.  Last month I saw my GP as I’d received a letter asking for me to go in and discuss my ongoing care.  My old surgery has now closed down, but the two doctors have merged into the one large village practice.  I went along a month ago and sadly in the short appointment nothing got sorted.  My GP asked me to book a double appointment, so we could have more time together and we would take it from there.  Now whilst I did feel dismissed at this original appointment, I understood the need for more time to discuss my complicated medical needs.

This surgery has been the subject of many “negative” posts on social media sites, so before the merger I was a little nervous as to what my personal experience was going to be.  The first time I attended one of the receptionist’s from our old surgery was there, it was quite nice to see a familiar face and I told her so.  On second attendance I booked in using their state of the art, electronic system, it was really quick and easy.  The waiting area’s have lots of seats, it’s all on one level, perfect for my wheelchair, the same getting to and from the consulting rooms.  I can not fault this surgery, YET!  For both my doctors appointments they have been on time too, which has impressed me, this never used to happen. 

So my second appointment was this week, I went with a little list of things to discuss and as we worked through them I realised this move was going to be so much better for someone with chronic health issues like me.

We talked about my shoulder problems rather than rushing down the orthopaedic referral route we could try exercise to strengthen them, the surgery can help me with physiotherapy, in house, so a referral was completed straight away.  Then I asked for the blood test that the Royal London wanted completing and also explained about the bladder issues.  That was it I was being sent for a scan to the local hospital of my choice and blood test was arranged, I just needed to speak to reception about a convenient time.  We talked about my weight and gastric problems and I told him the final phase of tests would be at the end of this week, hopefully a plan of action would be organised soon.  He asked if I had heard from Kings College Hospital yet, I hadn’t but he assured me the referral had been completed so it was just a case of the letter arriving.  I asked about the possibility of getting my exemption certification for prescriptions, as I have a carer and am unable to leave the house unaided I do qualify, he was happy to complete the paperwork, especially once he was aware I had been awarded Enhanced PIP, so that’s another thing sorted out.  After dispensing my medication I had filled the 20 booked minutes but I felt I had dealt with everything properly.  I hadn’t been rushed in and rushed out, I felt cared for finally and that was a lovely feeling.

I thanked the doctor and headed to reception, I needed to arrange my blood test.  It was a non-fasting test and as it was now 3:20, they asked if 4pm would be ok?  If I stayed on site I would be squeezed in as soon as possible, so Andrew headed off with my prescription and got that completed and I stayed to get my bloods done.

The next morning I did get the letter from Kings College Hospital but I needed a password for the Choose and Book system, I could only get that from my GP surgery.  I dialled their number and they were closed for lunch.  I made a mental note to call back.  Ten minutes later my phone rang, it was the doctors asking to book me a blood test, I laughed and said you must have read my mind I was trying to ring the surgery and anyway I had the blood test on Friday?  She said yes I needed a retest, could I come in the next morning.  I of course agreed, something had flagged up.  She was unable to transfer me to the secretary for me to retrieve my password so I needed to callback.  Fifteen minutes later and I made the call, I got through to a fantastic lady who not only helped me get my password but she accessed the Kings College appointment system for me and booked the appointment!  What amazing service, I couldn’t be happier, she said she would send out the paperwork, the following day it all dropped on the doormat.

I have to say I was astounded after all the horror stories and worrying I am thrilled with the care I have got from my new GP surgery.  It may not always be the same but they have so far been supportive, caring and helpful and to be fair that’s all I ask for when I am feeling ill and struggling with my health.

So thank you Burnham Health Centre, you’ve got it right for me 😊

The Gallery – Landscape

Having EDS it takes a lot of effort to get up, get dressed and go out for the day.  These days hubby and I have decided that with my health in such a sudden decline especially over the last two years we would make more of an effort when I was having good day.  It really should be a case of “One Life Live It”  so recently we have been to Richmond Park and had the amazing views over London, seen the deer wandering freely sadly it was bitterly cold and we had to cut the day short, then a couple of weeks later we Andrew had surgery!  A few days after his operation he was sick of being cooped up inside and wanted to get out and about so we headed to Windsor for some fresh air, what started as a stroll ended up becoming the “Long Walk” from the Castle to the Copper Horse and back.  A total walk of over 5 miles, at only 3 days post operatively for him and with me still in quite a lot of pain, but still with our mantra ringing in our ears.

However when you look at the landscape view from the top of the Copper Horse we think the walk was worth it!  Albeit we were both a little broken for a couple of days after it, but look at that view, who wouldn’t want to see it?

I may have EDS but EDS doesn’t always have me!

Pain Levels

Each and every morning when we wake up, it a case of assessing the level of pain, just how severe is it today?  Also where is the pain, my headache, joint pain, gastric system, it is all dependent on what type of pain as well.  I’ve learnt that it’s never going to have disappeared, I could never be that lucky, but is at  level where I can get up and do some kind of activity within the house or is it a complete bed rest day?  

Pain scales feature a lot with EDSers, we use them in discussion and when speaking to our doctors and consultants.  The standard pain scale is 1-10 as featured below.

 

Now my day to day pain level sits at a 7, which is why my brain fog is generally not good, my concentration is poor and I struggle to focus on things for any length of time.  Once it starts to move beyond the 7 mark I am then sofa or bed bound, I am no use to anyone, I can’t think, can’t string a sentence together and just need rest.  On the outside I may look ok, maybe a little tired but if asked I will often say I “fine”.  Always remember this though about all of us ……

  

EDS Documentary

Not long ago the Community Channel showed a documentary called “Issues with My Tissues”  It followed Lara Bloom who is the CEO of EDS UK who had decided a few years ago to complete the London Marathon.  She was advised not to complete it and as you follow her story and it is amazing to see the challenges and hurdles she really did have to face in the training and completion of such an arduous race.

It also showed other sufferers, some who I know via social media now and how they are coping with this illness.  I recorded the show and to this day even as I type this it brings me to tears to think of Lara’s words.  Occasionally I watch it back just to hear those words to keep driving me on!!

She is an inspiration, I have decided to set myself some goals and I am going to need medical assistance to achieve those goals but I will do it.  Everyone keeps telling me I am a strong character and if I am, well I will do it.  So beware to all my consultants I am coming to ask you, no tell you that I expect your help over the next six months, I want to achieve and I will achieve!

For anyone who hasn’t see the documentary here is the link, its just under an hour long but please watch it, it’s fantastic and hopefully you will understand a lot more by watching Lara’s incredible journey.

Click this link to view Issues with my Tissues thank you 👍🏻
 

 

Support Network

So you’ve got the news, you have Ehlers-Danlos, how do you take that information?  Cry with relief, that you’ve known there was something wrong and to have it confirmed just proves you were right, feel scared wondering what does this mean, where do you go from here?  Anger, that’s a common emotion and one I still don’t have in control yet.  It’s a broad spectrum of emotions when you are finally delivered that news and that’s where you need a good support network.

  
Firstly your nearest and dearest are the obvious choice, they will see you at your lowest, the good days and bad but like you it’s going to be a learning curve for them.  So who next?

  
Both the HMSA and EDS UK have forums which you can join and chat to other sufferers, people who have been newly diagnosed or have know for a long time.  The experience is so valuable, they can tell you which specialists to see, how to manage the pain, bracing and what works for them, pacing and how not to get into a flare and ultimately just that kinship that you aren’t alone.

I’m a member of EDS UK and they also run a helpline so when I need first hand advice I can always call or email them, to ensure I get an expert opinion too, this worked back in December when I was an inpatient in my local hospital, although the hospital refused to listen to EDS UK’s recommendations.  That’s when it gets infuriating these people are the experts, these people are my support network, these people are my people.

Finally one of the most daily accessible support groups are on Facebook and there are so many, you can pick and choose which ones you would like to belong to.  I have ones for my EDS, for my PoTs, for my NPDH, so I can speak to someone depending on what procedure I’m going for, or what specialist I’m seeing.  Someone, somewhere will always be online, members are in Australia, the USA and of course the UK, so it means you are never alone.  You just need to shout out that you need someone to talk to and people will pop out of the woodwork.  

So always make sure you have a good support network because you won’t get through this without one, sadly you lose a lot a real life friends that’s a fact of life, but the online support makes up for the ones that didn’t matter in the first place.

Brain Fog

Hopefully this explains better than I can what exactly brain fog is
Hopefully this explains better than I can what exactly brain fog is

Anyone with Fibromyalgia will know immediately what I am talking about and over the last two years this has to be one of the most annoying symptoms ever.

Some days I find it difficult to concentrate so reading a boo is impossible, because I will get to the end of a line and not have a clue what I have read, and it will happen again and again.  On those days I just don’t bother reading, that will be a listen to music day.  Also that will probably be a don’t write any blog posts day as they will be full of doubled up sentences, bad spelling and absolute gibberish, this kind of day is hard because with very little stimulation I feel almost as if I am not helping my own brain trying to improve, but I just end up triggering my heading up on the pain scale.

Structuring a sentence can be comical, thankfully Andrew and I have been married for so long that we do tend to finish one anothers sentences, but if I am speaking to someone new I can really struggle to have a sensible conversation.  Which can sometimes mean I either look really withdrawn or maybe quite rude, it isn’t the case honestly I just try not to make an exhibition of myself.

I find if I do chat and manage to converse though in a room of people, I can’t blank out background noise and get confused, so I struggle with what I can hear.  Also if I am speaking I can’t do anything else, Speak or eat, not chatting over a meal, I cant manage two things at once.

Finally on the really rough days when my brain fog is at its worse the actual mental exhaustion is debilitating, there are certain times Andrew will come home and there is no music, TV or computer on, then he knows its not been a good day!

So to all my foggy friends, just take your time and don’t stress we all have this problem xx