Silent Sunday – 19th July

Usually Silent Sunday has no words but today I need to break with that tradition, yesterday 18th July was a horrible day for me, not only is it my fathers birthday (he would have been 82 this year) but as I went to bed at 2am on Saturday morning I heard the news that Jules Bianchi had succumbed to his injuries sustained at Suzuka.

The pictures usually have to be taken within the last seven days well these haven’t, the picture of my Dad is one of very few I have of him.  He was never in front of the camera, generally always in the kitchen preparing us food, he loved looking after us.

The photo of Jules I took during the Drivers Parade at the Singapore Grand Prix, it was his last full race, this fact we were never to know.  I met him at that race and he was so lovely and kind, it breaks my heart that he has gone.

So today here are my Silent Sunday images


What Next

As promised to Emma, I got all my paperwork together and started making the calls.  My first call was to the appointments line at Wexham and Heatherwood to see when they would be able to let me see Dr Levi.  I explained what I needed and gave the call handler my NHS number, I was still a patient of the consultant so I didn’t need to be referred back into the system thankfully.  She took a few moments to look through all his appointments, he sees patients at a few of the hospitals, so knew this might take a while to work out when his earliest time might be.  So you can imagine my shock when she told me his first available appointment was October 15th!!  I was astounded, I thanked the lady for her time but declined to make the appointment and there was no point getting stressed out or angry with her, it wasn’t her fault there were no appointments any earlier than three months time!

I put the phone down, redialled the switchboard and asked for Dr Levi’s secretary, sadly she would have to deal with this mess. She was going to have to deal with my frustrations, after all she would have seen the letter that had been sent from the Royal London over five weeks ago.  Nothing had been actioned, the frustration was beginning to eek out of every pore of my skin.  I want to remain positive but how could I do this with incompetence at every corner?  She answered the phone and I explained my predicament, Im not sure if she understood my concerns or was just being obstructive but immediately she rubbed me up the wrong way.  She told me I needed to call for a cancellation every day, I explained I didn’t have an appointment in the first place, I had just enquired about one today because I had been told by the dietician that I needed to see Dr Levi to approve the fitting of a NJ tube.  The NJ tube that had been requested over five weeks ago in a letter from the Royal London Hospital from Professor Aziz’ team to Dr Levi.  Could she explain why this hadn’t happened, why nobody had been in touch with me.  She had no answers, this then upset me, as I said surely Dr Levi could consult with me over the phone, she said Dr Levi didn’t speak to patients?  I beg your pardon?  He’s a doctor and he doesn’t talk to his patients.  At this point she lost her credibility with me.  I asked her to get this dealt with as a matter of urgency, I could not wait three weeks let alone three months, if Wexham couldn’t insert the tube please find me a hospital who could.  She then said this was above her pay scale and she would pass this to her supervisor?  What does that matter to me, a patient, I couldn’t care less what she is paid, she is there to care for me, to ensure I am made better.

I was at my wits end, by this time we had taken several pregnant pauses and I was not willing to back down, I insisted she took my NHS number, my phone number and she was dealing with my issues.  She said she would go and find out what she could and get back to me.  Later that day I got a call, but it wasn’t good news, she had emailed her supervisor and had not received a response, so would get back to me as soon as possible.

The next day my mobile rang again, it was Dr Levi’s secretary, she had found out the he was now in fact on holiday for a “few” weeks and this could delay my insertion.  She asked that the dietician send an email to speed up the process, she would like the email to say how urgent this was and I explained that I didn’t see it being a problem, so we left it at that.  I called Emma and left a message with a colleague of hers as she wasn’t at her desk, so currently I am in limbo.

Hopefully on Monday I will speak to Emma and she will send an email to Dr Levi’s secretary for me explaining the urgency of getting the NJ tube fitted.  Then we can move forward with getting a consultation with a doctor, I don’t care who at this stage to discuss tube feeding and hopefully we can get this process back on track.  Otherwise I will have to speak to the Royal London and see if they are willing to take me back under their wing because despite my positive attitude I need to accept time is running out on achieving my goals.  If I want to seriously gain weight before year end, I need to get on with it NOW, not October, November or December.  If I want to get to Australia to see Chris and Kim I need to get this over and done with, I don’t “want” to do this, I have to do this.

I just have to keep smiling, think positive and keep smiling 🙂

Meeting my Dietician

So with my positive mindset and changing attitude I was doing my very best to keep smiling and try eating every day.  It wasn’t going too well, the pain was horrible, the portion sizes were tiny but I was trying my very best, I couldn’t be told off for not trying.  Very early in the week I had received a call from the local nutrition team, they had received the referral from my GP and wanted to visit me at home.  Immediately I got butterflies this was the beginning of my tube feeding journey, ok I didn’t want to go down that route but even if it was very short term, I could do this.  I could succeed, I would do this smiling and I would win this fight.

We agreed to meet on Thursday morning at 10:30am, the dietician, Emma would be coming, along with the Home Tube Feeding Nurse from Abbotts, we exchanged details in case either of us should need to cancel or change the plans.  Otherwise that was the arrangement and with a sick feeling, which lasted for the next few days, we ended our call.  I tried not to think about Thursday morning but my mind kept wandering back to what we would discuss.

They both arrived just after our planned appointment time, I had slept for about three hours the night before.  I had worried myself silly about what this meeting and its outcome would be.  Both of the ladies were lovely, Emma, my new dietician was so kind and warm, she got straight to the point and asked why I was being put on tube feeding.  So I grabbed my file and we went though what had happened so far, the referral up to London by Dr Levi, the tests, then being sent back to my local hospital for the tube to be fitted as it was the safest option.  She then asked when the tube was being fitted, this stalled me, I told her I had assumed that was why she was there.  She asked me to explain, so I said I hadn’t heard from anyone in the last four weeks since the decision had been made that I was to go down the enteral feeding route, so hearing from her, was what I believed, the starting gun for the race.  She said no, I needed to see my consultant who would needed to approve the exact type of enteral feeding (NG,NJ, PEG, TPN) and then once he had “signed off” it would be all systems go.  

They both assured me not to worry, it would just be a case of calling the hospital and getting the ball rolling.  I said I would make sure I got on with that immediately, I had Dr Levi’s details so would be happy to make first contact.  Emma asked about what I ate and when we discussed about eating, little and often, high calories but the pain that goes with it often left me wondering why I persevered, she asked about Ensure drinks.  I told her I had been trying hard but I was beginning to struggle with a whole one of those now.  She suggested she bring some samples around for me to try and if I liked any then I could request them on prescription from my GP.

The nurse from Abbott went through the tube feeding process and how it shouldn’t  hinder my life too greatly.  We discussed how it would be fitted, how to care for it, how the supplies are delivered and how you can even go away on holiday and they will ship the bits and pieces overseas, to reduce the stress of customs and paperwork, it all seemed too good to be true.  Maybe this wasn’t as daunting as I had been expecting, the most daunting thing at the moment was the insertion to be honest, but I’m sure I can get through that, if I could jump the hoops to get it done! 

All in all it was a great meeting, so as promised when they left I dug out my paperwork and started making calls, would they be as successful as the meeting?

Change Three – Socializing 

Having a chronic illness has meant I’ve learnt to get used to my own company.  In the first year I had to get used to being bedbound rather quickly and once I got my wheelchair that opened up the world again for me.  Only it didn’t really, it gave me mobility but with Andrew so busy and so reliant on him it meant I was housebound and if I was lucky on Mondays after work we could go food shopping, then on Sunday’s we could go and do things on his day off.  Some evenings we started making plans, as and when we could but it was all hit and miss.  A year later Andrew took me to visit Sportsable, which was brilliant, but on that one visit I managed to cause myself enough damage to my shoulder that I doubt I will play wheelchair basketball again, which saddens me greatly.  

When I had my weekend melt down, during the discussions that followed we talked about what should happen next to make life better for both of us, to improve both our quality of life.  This wasn’t just about the pressure of Andrew having to keep me “entertained” or cared for but it was about how I was feeling on a day to day basis.  What’s it like for a 40 something woman who was previously employed in accounts, had a good job, nice friends as a couple, did voluntary work and a nice social circle as an individual to then become a recluse?  I no longer had my job, all those so called friends had fallen by the wayside, the voluntary work had to stop as it was so physically demanding, as for the social circle of friends well let’s not go there, it would probably start an argument.

I had become dependent on social media Twitter, Facebook and Instagram, the friendships forged online had been amazing.  I had even met some of these people in person and they were so supportive and have been incredible, just what you need when feeling so low but they aren’t on your doorstep!  Then there are all the support groups for all the various conditions, the Ehlers-danlos syndrome, postural tachycardia syndrome, hypermobility syndrome, new persistent daily headache, chronic daily headache, there were loads of them and as more “conditions” became possible another group was joined.  Suddenly my Facebook was awash with questions and pictures of people’s problems and it’s all becomes a downward spiral, in my opinion.

To the point where when you do hit rock bottom as I did that Saturday night, did I turn to any one of my “support” groups? No ….. I just allowed myself to spiral out of control, into complete misery, why could I not turn to these groups? What was holding me back?  I ask these questions, as I did not have the answers ….  So much so that I am trimming down my membership to these groups, I felt I couldn’t open up to these groups, therefore I obviously don’t trust these groups.  I shouldn’t be in them, it’s time to leave, also the groups where I don’t have the condition as fully diagnosed I will be leaving immediately, I’m no longer second guessing the doctors.  It’s time to stop worrying myself ahead of time, who knows what “might” happen, I just need to live in the here and now.

Secondly the plan is for me to socialize properly out and about a few hours a month, just leave the house, be it to Sportsable, or find some kind of club that I might like to join.  To see real people, to speak to someone else apart from Andrew, to hold a conversation with an adult, it would be nice and I think it would help keep me sane.  

Since that night we had a village event and I left the house for a few hours, I bumped into people I haven’t seen for ages and it was lovely.  I went home with a warm fuzzy feeling inside, others won’t get it, but three things happened …. someone told me they liked my baking, I saw two friend’s new baby and some neighbours I haven’t spoken to in years.  These are all normal things to most people but to me they were huge and I went home and cried because I felt part of something again, I haven’t felt part of anything for two years, it was a turning point a big turning point.  Another one I’m ready to take, my life is full of changes at the moment, thank goodness I have a strong man holding my hand as I take these tentative steps towards getting my life into some kind of order.

Anyway if I can’t get out and about we will always be in a position to organize an evening or afternoon at ours, who’s up for it, the kettle is on or Andrew’s cooking 😜, who would like to come and keep me sane, keep me company and make me smile again? Xx

Kings College – 6th July 

Having had a particularly rough weekend I was not looking forward to, one the drive into London and two being hooked up to a heart monitor for a week.  For the first time it crossed my mind to cancel an appointment, to actually give up on the investigations, after all we know I have Postural Tachycardia, what’s the point of all this additional to-ing and fro-ing.  As we went to sleep on the Sunday night Andrew left the decision with me, if I wanted to go I would need to wake up at 5am, it was a 9am appointment.  

I set my alarm and would see how I felt when I woke up, my body clock woke me at 4am, that was us definitely going then.  I got ready as quietly as possibly and then just after 5am woke Andrew as gently as possible.  We left the house not long after and within an hour were sitting outside the hospital, we had missed all the traffic.  I dozed in the passenger seat, Andrew went off to find breakfast. At 8am we went inside and thankfully they saw us early, although they don’t always.

The nurse fitted three ECG stickers on my chest, and then clicked the monitor leads to them.  That was it I was being recorded, extra supplies were provided, a map of how the tabs attached and instructions on when the monitor needed to be returned.  The following Monday before 11am, which was a nightmare as Andrew is working at a school sports day, but we agreed the machine would be back.  All done we left and started the slow journey home, it was rush hour now, this was now going to be the nightmare part.

We finally hit the motorway and were relieved that we had got that bit over and done with but we needed to sort the logistics out for the return of the machine.  Who could help us, only the box needed to go back, not me, so we began racking our brains.

After a few days I decided the simplest option would be to drive up on Sunday evening and unplug once we get to the hospital and leave it in a Jiffy bag with my name and hospital number on this would save any stress the next day after all the only lost data would be whilst I was sleeping and they already had six days worth of that! So that’s exactly what we planned to do

All week I made my notes, when I ate, when I slept, how I felt, by Thursday the ECG stickers were really affecting my skin I was so sore and would be glad when it would be all over.  Friday I disconnected for half an hour and had a good soak in the bath, to give my skin some respite and it felt great. Saturday night I went to bed alone, Andrew had another huge gig but I clipped the machine on my bed frame and dozed in and out of restless sleep until he got home, then once he was here I fell fast asleep I must have been exhausted!  I woke at 9am to take my tablet and start my days notes, I needed to take the timings from the monitor, only there was no display on the machine.  It has obviously gone flat, I woke Andrew gently, he looked at it pressed a few buttons and said no it was dead, the monitor had failed.  So I made the note and removed all the ECG stickers, I was free of the machine!!  I took my tablets and went back to sleep.

We drove into london late evening, it took nearly three hours to get to London to drop it off.  The hospital was almost in darkness when we arrived, however we made it to the first floor, but the door to the clinic that we needed to get inside was locked.  After deliberating how to get in, we would need a security man ideally, a doctor appeared with a porter and a patient in a chair.  She spoke to us and immediately offered to take the monitor and in the morning would take it up to the clinic and give it to them personally, she explained, she was an A&E Dr.  I thanked her profusely and entrusted the monitor into her care.

We left the hospital planning our journey carefully, the traffic was being particularly difficult but we were becoming London experts now, so managed to dodge traffic jams caused by closed roads.  We finally got home over four and a half hours after we left that afternoon, both rather tired.  My next test is not until 20th July back at Kings College Hospital 🙂

Change Two – Weight

Despite the hospital’s seeming sense of urgency and having chased my GP, yet another week passed and once again no contact had been made from the local nutrition team regarding tube feeding placement. Then it dawned on me anyway just how much weight might I gain via this tube, so I turned to my friend the Internet and did some research, I needed to go into this with my eyes wide open and completely educated.

I found a couple of sites that spoke of very little weight gain, upon fitting of various tubes dependant on their placement, or one person even mentioned a loss, this left me wondering what was I going to do?  I was once again thinking what am I putting myself through hell for maybe a zero weight gain.  We then visited a friend a few days ago who had received TPN which is high end parental feeding and he had experienced a half kilo loss and this really did kick home the fact it could all go wrong and then what would we do?

I also found a document, from a health trust, about how an NJ tube would be fitted and reading that not only put the fear of God into me, but it really hit home this was just around the corner and it indicated that should an NJ fail a PEJ would be necessary and I would be devestated to have to go down the surgery route.  So I felt I needed to kick myself up the backside, in the metaphorical sense.

I know Andrew has been saying for ages <insert his very smug face> little and often food wise but I think I personally have need to get to this point, to understand it myself.  Now whilst it hurts, and believe me it still does hurt to eat, I’m really going to struggle with this goal but I am willing to persevere with trying to gain weight until we get to see the nutrition team to discuss how we move forward.  After my horrible weekend I weighed myself and I had dipped down a few pounds but by making sure I had breakfast, elevenses, lunch, snack, dinner, snack, treats I had managed to regain those pounds over a few days. That for me is a massive positive I haven’t gained weight for months !!

So for now my goal is to avoid tube feeding of every kind, I am going to eat little and often, as often as I can, it isn’t easy because I have the stomach of a gnat but I’m trying my best.  I will keep you posted on how I get on, my personal weight goal is 8 stone, fingers crossed I get there x

Change One – Painkillers

If you opened my medicine drawer it was like Boots the Chemist for all my medications but specifically for pain it had been getting out of control, the doctors throwing stronger and stronger pain “relief” at me in a hope to get a handle on the ever increasing pain.  Now there are several issues here, pain medications in Ehlers-Danlos sufferers soon loose their efficacy, basically they stop working, so you need to step up a level, then another level until you are on the strongest most addictive drug possible, which is where I was at.  Next the effect the medication has on all the other organs, codeine has serious implications on your gastrointestinal tract, so with my feeding and bowels being an issue, this doesn’t help at all, headaches also, all painkillers cause rebound headaches, so too many tablets make headaches worse.  So you can imagine the more medicine I’m on the worse I’m going to feel, I wake up every day look at my tablet strip and think about the poison I’m putting into my system and I hate it.

So my first decision was to stop all addictive pain medication immediately, yep just go cold turkey.  I had no intention of doing this slowly of trying to wean myself off it, I couldn’t be bothered, I doubted they were even working on me as every day I was in agony so I was just stopping and I did.  Sunday morning I opened up my tablet dispensers and removed every Tramadol tablet and threw them away, I dug out three boxes, yes three boxes, that 300 tablets of co-codamol  to return to the chemist.  I worked out I would continue to take the anti inflammatory Meloxicam and my Fentanyl patch, that would be it.  No painkillers by mouth any more, I would give physiotherapy a try to strengthen my body to stop pain, or just learn to live with it.  Enough is enough with the poison of tablets that are dulling my senses and not helping in any way shape or form.

The first few days early this week were hellish, I was shivery and my HR was all over the place but by the end of the week I felt more human, my HR was back in the 70’s at rest and the world was a bit clearer, the pain isn’t good but it never was.  I’ve taken to sitting in the sun, the warmth helps a little but I refuse point blank to take another painkiller by mouth from the opiate based family again.

The chemist was a little taken aback with my “stock levels” but they have been handed over now and you have no idea how cathartic that feels to give up everything.  So goodbye co-codamol, tramadol, oramorph, methocarbamol and  diazepam, we won’t be meeting again.  To other spoonies try it, take control, it’s an incredible feeling in itself!  I know it’s not going to be easy, who am I kidding but I’m fed up of just having tablets and liquids thrown in my direction and knowing full well they aren’t working they are in fact damaging me more than they are helping, so here is to taking control and finding out what works.

Mood Swings

Towards the end of last week despite some lovely days out I could feel my mood slipping away, maybe it was tiredness, lack of spoons or just plain old depression rearing its ugly head again.  That’s the thing with mental health you don’t have a choice when it comes and goes, it decides when to pop up and blight your life.  You can fight it really hard and only those with the strongest will/can succeed.

Friday night we had plans, we headed out I could feel myself snapping and just lowering into this unhappiness despite being surrounded by people and people I really do love.  When we left for home that night it was almost a relief, I had enjoyed my night but I just needed peace.  The usual Saturday routine occurred, Andrew worked all day then came home to get ready to go out.  He sat down and as soon as we spoke I just felt riled by whatever was said, so left the room, I didn’t want to argue.  An hour later he left the house for work and from then on I don’t remember much else, my weekend was a write off.  My mood was so low I ended up being so sick just from the stress of everything, I locked myself away, unable to talk to anyone.  

I felt Ehlers-Danlos had beaten me, it had stolen everything my happiness, my life but most of all me.  This miserable, sick person wasn’t me, I wanted the fun loving person who used to party on a Saturday night, not lock herself away crying because of the pain.  I felt so alone on Saturday night, I had no one for those few hours and it didn’t matter who on Twitter said I was brave or strong I didn’t care, I felt like a loser.  By the time Andrew got home I had been physically sick too, I was very poorly but he just monitored me through the night making sure I didn’t need a doctor, after all this was just normal pain with a little misery thrown in.

Sunday came round and I made a decision, the time had come to try and help myself, nobody was going to do this for me, that was apparent the previous night.  So I trawled the Internet and made some radicle and immediate decisions on what I was doing with regards my health from that day forward.  I knew it wasn’t going to be easy but I had Andrew and he was my one constant with his support anything was possible and maybe just maybe with some of these changes, some of these mood swings might lessen