An EDS Review

I had decided a long time ago that I wasn’t “gelling” with my EDS consultant, I wanted to go back and see the original doctor who diagnosed me, she had been thorough and kind, she had looked me in the eye and I felt had taken the time to discuss my concerns.  So I booked an appointment to go back to the Stanmore and asked if it was possible to see the original doctor, the booking clerk agreed that would be possible and a date was agreed.

My original appointment was moved due to a really bad chest infection, so the new date arrived and despite the sniffles Andrew and I went along with a three page typed up list of notes. My memory had deteriorated to a level that I was concerned I would go off at a tangent and I would leave the appointment and kick myself that I had forgotten a valuable point that I had wanted to ask.  We arrived, booked in and were called in on time, the doctor remembered me and said how she had been disappointed that she had never seen me since my diagnosis, I explained that I had missed her care and that albeit the other doctor had an excellent reputation, she and I had not clicked.

What I was there for today was some support to advance my care as I was feeling like I was floundering, every time I attended I was talking to the back of the doctors head and she always responded with “uh huh” “uh huh”  and then my appointment would be over, I not once had worked through any questions I had arrived with, I felt a little lost with my EDS diagnosis.  She started with questions about each of my issues and was writing down, my PoTs, Dr Gall, my GI issues Prof Aziz, my Neurology problems Dr Weatherall, we went down the list step by step, it felt like I was getting somewhere.  I then explained that I had asked my GP about a test for Sjogrens due to constant mouth ulcers and sores in the nose, which were causing me problems and he had been asking me for months to address them with the Stanmore but I hadn’t been able to, she agreed to to an immediate blood test, I felt a sense of relief, I would at least know one way or another.

As the appointment drew to a close she asked about pain management and I admitted that I have no input, I am struggling as nothing appears to work, she looked at me and said there really is nothing that can be done, we don’t want any of our patients on opiates so there is nothing more we can offer apart from the inpatient program to teach you how to cope with your illness.  We can’t cure you, we can hopefully give you the tools to manage day to day living and at that point I began to wonder why i was going to these appointments month in month out?

She showed me a book by a fellow sufferer called Isobel Knight and suggested I get hold of a copy and then said I would be referred for the program.  She would make sure I was accepted this time, despite me being declined on two previous occasions!!  I thanked her for her time and went to get my blood taken.

The nurses were lovely and after five vials of blood were taken, we were on our way home and I was soon ordering a book that I would hope become my bible on how to help my self become better!!  Because in all honest I don’t thing anyone else has the answers.

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Payback

As usual having pushed myself that hard, there were going to be repercussions.  Especially with the episode mid-gig on the Friday, so on the Saturday as Andrew headed out the door to work he tried to speak to me but got very little sense.  I was exhausted from the near faint let alone from all the fun I had at the gigs but I was no longer willing to let my illness define me.


The main thing was I had the tools to be able to enjoy myself, the wheelchair or crutches and no matter how much I disliked using them I really did need to need to rely on them.  Another thing I needed to consider was pacing, I was pushing myself to hard in too big chunks and this was detrimental but sometimes that just the way it happens.  I couldn’t say to the organisers of C2C, excuse me could we have a day off I’m feeling a little ropey?  I don’t think the US acts would care!!

So I had to draw up a plan to prevent payback and it is really quite simple ….

Firstly, if possible use accessible seating and entry, this saves queueing and saves valuable spoons which are needed to enjoy the gig itself.  the seating itself might be a separate issue because I will generally be away from all our friends but this is a small price to pay for my health and wellbeing

Space out events as best possible, now this is not always easy when it is a weekend event but when gigs are three in a row as they were in my previous blog post, prioritise, decide which is the most important and choose, difficult I know but it really does save on the wipe out effect.

Make sure to eat and drink as sensibly as possible, now this is a tricky one for me, with gastroparesis, my feeding is all over the place, so trying to get a meal down is not possible but just before my most recent gig I ate four small pieces of Sushi, it was more than enough for me for the whole night and didn’t leave me in agony.  Drinking, now I loved to enjoy a drink or two but it appears that is now no longer an option, I need to keep hydrated but not “drinking” so water water and yet more water and thanks to EDS I don’t need the bathroom like normal people.

So to avoid more paybacks like the one that followed my recent week of fun, I need to learn to pace and be sensible, it is such a steep learning curve being this sick but I really am trying my hardest.  I refuse to stop having fun though, why shouldn’t I go to concerts and see my friends, Ehlers-Danlos you won’t beat me  !!

 

A Busy Few Days

It had gone quiet for a few weeks after the Striking Matches gig which was probably a good thing, I had needed the rest to be fair!  We had missed our friends and with the news that the Troubadour was starting a monthly Country Music event we thought we might head up there for the April event.  The good news was our wonderful friend Liv Austin was headlining but supporting her was the just as lovely Lisa Wright.  The best thing about The Troubadour is being on the Old Brompton Road, if the traffic is kind we can make it in just over half an hour, so we headed off and thankfully were parking in the designated bay in good time.  We found every one in the pub and were soon ordering food and drinks.  It was great to see everyone, the community is so warm and kind and when you blog as I do they often welcome me with open arms, a hug and just let me know that I am not often far from their thoughts, these squeezes keep me going, so thank you guys, you don’t know what it means xx  

At 8pm we headed in, the pub was next to the music venue and Lisa was about to take to the stage, I haven’t seen her perform for a while, she often plays the other side of London, or on dates that clash with other gigs for me but I did mention to her and her family that her performance has grown, developed so beautifully, it is such a pleasure to see, she has travelled to Nashville to write and admitted that being a homebod it wasn’t her favourite thing but necessary in her career development, you can tell it has worked, she is flourishing, the songs are amazing, her guitar work is polished, she is so lovely and I wish her every success.

Next up was a band called Two Ways Home, I had been told about them as they had been involved in a competition recently with a friend of mine, they had quite a unique sound and mixed up their instruments and harmonies, I personally liked them, they are doing a tour of the UK so you may catch them on the road.

Finally Liv came out, now she is awesome, we have known her for a few years and she is changing all the time, developing as both a singer and a songwriter, the Troubadour is an intimate venue and it means you get the best out of the artiste, they really interact with the audience, she was chatting and singing to us but all too soon her performance was over, she kindly gave us an encore but being midweek, people had to get home and the curfew time was reached.  We all headed home for the night, it had been nice and thankfully it wasn’t too far home for us.

The next day we had been invited by a really good friend to see her perform at her Studio’s, now these studios are very special, these are the very studio’s that Freddy Mercury and Queen recorded at, Adele recorded her hit album in fact what we didn’t know until half way through that night was Will-I-Am was actually in Studio A !!  We were signed into the bar and ordered drinks, it was just the most amazing building, its a listed building and so beautiful, we settled onto sofas and were chatting with our friends and then suddenly we were being introduced to Mo Pleasure, of Earth Wind and Fire, but he is a huge producer who is working with our friend Katy.  So the evenings entertainment started it wasn’t country music and it was a nice evening, the hardest part was people disrespecting up and coming musicians and making too much noise in a bar environment.  Mo was listening intently to every act, you could see him concentrating, I wondered what he was listening for?  Then there was a commotion and turned round to see Apl-De-Ap had come up from the studios and was getting a drink and was tagging the bar wall, that was what the fuss was all about, he came over to speak to Mo and was soon gone again.  Finally Katy came on stage and did her set, she was brilliant as usual, her rendition of Whiskey and You gives me goosebumps and brings me to tears.  We all hung around chatting, enjoying the surroundings and hoping Will-I-Am might come up, however it got a little too late and we ended up having to leave, once again it was only a short hop home and we knew we needed to get me rested as we had another night out tomorrow.

 
Friday night had been on the cards a while, it was the last night of Dexeter’s tour.  We were taking a young couple with us who were having Dee and Gareth sing at their wedding in a few months and we thought it would be nice if they actually met before the big day, plus I wanted to hear “our” song again, why not??  The lovely young couple offered to drive us, so Andrew could have a couple of drinks, this meant for a change he could let his hair down.  We left a little earlier than usual and made it into North London in great time.  Now we park down a little side road, thanks to my little blue badge and there is this cool looking restaurant.  We usually head off to the pub to meet everyone else but having these friends with us I suggested we eat at this place for a change.  It turned out to be a great idea, I managed a little food, the place was called “Bird”  they made cocktails called “Dirty Bird” and “Dirty Ribena”  the food was cooked fresh and really quickly and we all left there in high spirits.   

   

We unfortunately missed the first support but got there to another lot of supportive hugs and kisses and in time for Act Two, Holloway Road.  What everyone wasn’t expecting was me not in my wheelchair, I had decided this as the venue was upstairs with no lift, so I was trying to be sensible.  Now I was doing ok, or so I thought.  Holloway Road were awesome, I was now hydrating on water as I was beginning to overheat, which is unusual for me.  Dexeter were due on, so we moved to the front, i stood next to the wall and one song in the room started swimming, I couldn’t hear the second song panic started to settle in and my friend who is also on crutches was sitting next to me, I touched her leg as I went down onto the floor and mouthed to someone get Andrew.  Next thing I was being given water, that is the first time in a long time I have had a near faint,  a couple more songs and I was beginning to feel more human, muscle clenching, breathing techniques I was trying all my coping mechanisms,  then Gareth started to call us up, oh dear he we go, Andrew was helping me up off the floor and we were on stage, i don’t remember what was said, i didn’t last long standing so they sat me on the edge of the stage.  

  Then Gareth and Dee sang our song to us, I was so proud I could have burst, that song means the world to me.  the whole concert was immense, I love these two and hope that they get every success they deserve, the band are amazing, the perfect line up.  All too soon it was over and sadly the security were kicking us out.  We headed out into the night air and back to Bird for donuts and drinks, it was the perfect round up to a fantastic night, albeit with a little hiccup, hey EDS wouldn’t be EDS without trying to trip me up, but I wouldn’t let it ruin my night, so I have had a busy few days but what effect has that had on my body??

A Gastroparesis Flare

So after what was a successful GI follow up appointment and then going to C2C it seemed my body went into complete turmoil.  Suddenly I was unable to tolerate meals again without pain or nausea, this wasn’t good!!  I decided maybe the first step would be to take a couple of days off solids and try my Ensure drinks, to give my stomach a rest.  The downside was even the Ensure’s made me feel sick, bloated and left me in pain.  I tried my best, knowing I needed to persevere as all the weight I had gained would soon drop off.  After a couple of days I tried a tiny plate of food, it didn’t go well and I felt I was back to square one. 

I was completely disheartened, I had worked so hard to gain weight, worked through so much pain and suddenly my body was just throwing a huge spanner in the works.  I weighed myself after a week and I was down by over 2kgs.  This was a huge blow to my esteem and I needed to try and eat, so I made myself struggle with a tiny evening meal, just to normalise life a little.  It didn’t help with pain or other symptoms and the weight continued to slip away.  I got to just under 50kgs again when I stopped weighing myself, I found it too soul destroying.  

The medication from the consultant is awful, it makes me feel really ill and judging by replies on the EDS/GP sufferers forum I’m not the only who experiences these problems, it’s nice to know I’m not the only one who struggles with medication side effects.  So I have put the tablets to one side and am just taking regular pain relief again, along with Senna to relieve the side effects that codeine and morphine give you.

Eventually I know I will need to speak to my dietician and consultant but I am dreading what they will want to do, for now I am trying my best to self manage, if I can do this with the least medical intervention that would suit me fine.  So for now my Gastroparesis is all over the place and poor Andrew is getting double portions of everything.  Whilst I am losing weight, he has gained it, poor thing!!

I will keep you posted on the progress once I have spoken to or seen the experts.

Striking Matches Gig

Following the success of C2C the organisers, arranged a series of follow up concerts with the acts who were here in the UK for the following week.  I had hoped to make it to a few of them, however the first few days after returning from London I ended up bed bound and for the first 24 hours completely comatose.

It was such a shame as on Tuesday we had been invited to the Ashley Monroe concert by the supporting act Lucy May who is a really good friend, she said she would put us on her guest list as it was completely sold out, I was so flattered by this I felt we should make the effort to go.  However by Tuesday night I still hadn’t got out of bed for the second day and had barely eaten, so it wasn’t possible, Lucy understood, everybody understands the nature of my illness, they are so supportive, that is why I love my country music family, they don’t judge me.

Later on in the week I was hoping to see Frankie Ballard who was gigging with Charlie Worsham but it was sold out, it was in Hoxton, I searched everywhere and couldn’t find tickets.  So in the end resigned myself to not going.  I looked up the Striking Matches concert and again sold out but the next day they tweeted about some extra tickets being released, I logged on quickly and bought one, I checked their accessibility policy and gave the venue a call the next day.

The venue, Bush Hall in Shepherds Bush were great, I gave them Andrew’s name and they told me to turn up five to ten minutes before doors open and speak to security and I would be let in.  I wasn’t to queue, they would just let me get to the side of the stage ahead of the crowd so I could position myself so I could see.  I was impressed with this, no area at the back, I could basically front rail again, in my chair.

We got there on the dot of twenty past and the security man let me straight in, it was fab, I was right at the front on the right hand side as this is the side Sarah stands.  The audience was allowed in about fifteen minutes later, Andrew went and said hi to some friends and yes it is hard being stuck in one place but that was that, I couldn’t move.  A couple of friends came and said hi and eventually the gig got underway, the support act was great, he was a previous contestant on the first series of the voice Max Milner.

We have seen Striking Matches more than once and absolutely love them, they write music for Nashville, I have their album and am a huge fan, we haven’t met them before despite trying on numerous occasions, so tonight was our night.  After an wonderful acoustic set, which is how I prefer to hear them, I feel the full band overpowers their guitar skill and wow they have such talent, they explained they would say hi and take photos at the back, yay !!!  So we queued up and finally we met Justin and Sarah, they are working on Album number two and I don’t know how they top such a quality product as number one, but they assured me it will be brilliant.  They were warm, genuine and kind, we were just thrilled to finally meet them and told them so.

  
We got our pictures and wandered off to grab some food and head home, that was it for the C2C presents events this year, it had been wonderfully put together, I don’t know how they will make it bigger and better next year, just don’t make it any busier, I was exhausted as it was!!  So thank you C2C until 2017 we are done xx

Electromyography Tests

My final set of test as requested by Mr Majeed were Electromyography, this was to check all the nerves in my hands and arms, I was experiencing a loss of sensation, pins and needles and numbness in my left hand.  When I had been examined during the pin prick test it was noticeably diminished, i couldn’t feel the pin being jabbed into me, so there was cause for concern.

Along we went for the morning appointment, the first thing I was asked to do was immerse my hands into a bowl of really hot water to get my hands warm.  To test them they need to be as hot as possible, it was decided we only needed to yes the hand that was possibly “damaged”  however he explained that his test would only show that the nerves worked in the arm, it wouldn’t show there isn’t a problem elsewhere.

He attached electrodes to my arm and them my hand and started putting electric pulses through, as the hand, them and fingers twitched he would mark my arm with a blue pencil.  It was really weird and by the time he had finished my arm and hand was twitching all alone, it was spasming , he measured all the blue lines and then rubbed them off.  Explaining he would write up his report but everything seemed ok with those tests, so that was it for my final set of shoulder investigatory tests.

I’m due back to Mr Majeed in May to discuss what next, the shoulder is still stuck, the pain hasn’t improved and the numbness etc is still apparent so I dread to think what he is going to suggest, I just live with it and hope one day to wake up with it back to normal!!

Country 2 Country 2016 – Day Three

Final Day, I was sad but relieved at the same time, exhausted and now ill I wasn’t sure how I was going to last the day I just knew I had to get through it some how.  We got up and dressed and went for breakfast, by now I had lost my appetite completely, Andrew made me have a little bowl of cereal but I struggled with it.  Once done we went up showered, dressed and packed, that had been our last night at the hotel, it had been a perfect location and we would definitely be back.  We left and made it back to the O2 in time for the first acts of the day Southern Junction were at the Entrance Stage and Paul Carella was on The Town Square Stage, we split our time accordingly.  Our W21 team mate Karen had arranged for us to have Media accreditation that day, one thing I had asked for, and the only thing I wanted all weekend was to attend the Eric Church media, so Karen organised it for us.

We went to the Media centre and got all our bands, three sets attached to our wrists meant various queue jumps, accesses to areas and entrances that we hadn’t previously been allowed. It was at this point we were told that Frankie Ballard had just cancelled all his media for the day, that was disappointing but nothing could be done, we went into the room to be shown press room etiquette and as we came back out the worst news ever, Eric had cancelled his media, he had picked up a cold in Europe and was saving his voice, so didn’t want to speak until the evening.  I was gutted it was the  only thing I really wanted for ME and it wasn’t happening, oh well, I would get Ashley Campbell (Glenn’s daughter) and Kacey Musgrave’s interviews to attend, it would be good practice.

  
First we went back to Ny-lon with the media bands we could get in easier and there was a special area for us to sit, first there was CC Smugglers and then Striking Matches plus it was warm in there.  CC Smugglers we hadn’t heard before, we heard the end of their set and their interview was hilarious.  Striking Matches as always were on top of their game, they arrived a little late but nobody cared once they started.

Once we finished there we did our media stuff which i found interesting, listening to their stories and finding out how it is done.  Yes it might get a bit dull eventually, keep having to do it time and time again but I enjoyed it.  Then we headed back outside, we met up with a friend, we needed to get Andrew something to eat before the main event, we ended up in one of the pub venues and ordered a meal and some drinks.  We actually stopped for an hour or so, it was nice to just get out of my chair, sit on a sofa and natter.

Then we went off to the arena, tonight for me was the bit one, there were two I was desperate to see Chris Stapleton and Eric Church, sadly I missed nearly all of Andrew Combs due to our meal, I caught the end of his set and what I heard I like, as I say this weekend there was nothing I hated.  between each main act there was a little act on the Yamaha Stage, so we saw Striking Matches again, we were quite happy, then Chris Stapleton.  Now most people will know by now, his performance at the O2 was a “you had to be there” to feel it.  The atmosphere was palpable, I had tears as did most grown men in the audience I later found out, his voice was incredible, his wife sang like an angel, I have listened to his CD over and over, I didn’t actually think I would see him, even though I knew he was on the line up, then there he was, singing in front of me and it was better than I imagined. Far far better.  As he left the stage the O2 wouldn’t go quiet, we wanted him to give us an encore but the lead up acts don’t do that, so we eventually had to give up and resign ourselves to the fact his set was over.

  
However it meant we were one step closer to The Chief, Mr Church, I have front railed him twice before I got too sick.  I absolutely love his music.  I play it loud, I play it proud.  I knew he was going to play “These Boots” so begged the steward to pass my boot to the front, only he was hopeless and just stood there with it in his hand 😦  I sang every song, I loved every moment, it wore me out but I was smiling and happy, he has a song that has a lyric “Funny how a melody sounds like a memory” his songs took me back to happier times, when I was well, or journeys in my car to work, summers days, it was just perfect.  All too soon the main arena was over but I had seen The Chief and I was thankful for that.  Our final after party with A Thousand Horses and our friends and then home, it didn’t take too long, we got home about 3am, to a cold house and three hungry cats.  It was nice to climb into our bed though and that is where I stayed for a couple of days, broken!