Hit A Wall

It’s been creeping up on me the last few days, I could feel my body beginning to show me a few signs, the aches were worse than usual, I had an earache which would occasionally make me put my ear down onto my shoulder to try and stop the ringing and just halt the stabbing pain through my head.  Finally the sore throat which I developed over the weekend, and I had held it at bay for a few days sadly the last two night I had been kept awake with a feeling of razor blades and tears streaming down my face but I wasn’t crying it was just from the scratchy throat.

I went to bed last night after an evening messing around with my iTunes, I wanted to get it ready for going away.  I haven’t had my music on my iPad or phone for years, so Andrew managed to back up my old PC and get it finally onto my Mac.  Yay!!  I sat for the evening quietly loading all my CD’s from gigs I’ve been to and then at bed time I crashed and was soon asleep, however at 2am was awake with this horrific throat, ear combination.  I got up and to not disturb Andrew went downstairs, made a lemsip and slept on the sofa for two hours.  I was so uncomfortable down there I went back to bed.  

Andrew headed off to work, God knows what time, he didn’t wake me and then came home at 10:20am to take me to an appointment, which I had missed, it was booked for 10am!!  I was obviously sicker than I realised!!  I fell back into a fitful sleep and when I woke another hour later asked Andrew via text to stop at the chemist, I needed medicine.  He dropped home a little while later and I explained about my bad night, he worked out that I had been up as I had moved my things but had no idea what times.  He said over the last few weeks we’ve obviously overdone things and my body is taking the brunt of it!!

Tonight I’m meant to be going to Jess & The Bandits but I doubt I will make it, I’m just not well enough.  I have to put my hands up somewhere and say no, I can’t do it, I’m chronically ill and I need so slow down on occasion.  I need to be well for Monday, to fly. So my goal at the moment is to rest and get better for that because I can’t bear the thought of having to cancel that because I’m too sick to travel.

EDS I may have hit a wall today but I’m not beaten !!


When I had my recent telephone conference with Professor Aziz he asked that I try Pregablin in an attempt to help with controlling the nerve pain within my abdomen.  I had received the prescription from my chemist and held onto it for a few days, new medications always make me nervous.  I read the inside sheet of paper with fear, considering all the other tablets I take.  Would this new tablet mess up the whole apple cart?

This was about six weeks ago now, I had visited the doctor and he encouraged me to try the tablets, explaining that it had taken a board of decision makers to approve the release of my prescription.  He accepted my concerns, that all medicines had side effects and that yes some might be bad and I should monitor them and report back.  He felt that the best side effect that might help would be the sleepiness, by now the pain in my shoulder had me down to two to three hours a night, so any improvement on that would be a bonus.

The first night I popped the pill along with the concoction of medication that I take at bedtime and I fell into my usual fitful sleep.  However the waking the next day was the big issue, the somnolence, I was so drowsy.  It was like someone had drugged me, which technically they had with this new medication.  I slept on and off all day and by tea time the effects had just about worn off and I felt really hungover.  It was an awful feeling and I knew in a few hours I would have to do it to myself all over again.  This was classed as the low dose and after a week I was to add a second tablet to the equation, then the third week another tablet, I was to titrate up until I was on 125mg twice daily.  This was basically five of the tablets twice a day, if one knocked me out, what the hell were ten going to do?

Within three weeks I noticed that my headache register had started to slip upwards as well, the 5’s and 6’s were now 7’s and 8’s.  This was bad news and the worse side effect of them all was my mood had slipped, behind closed doors I was feeling very morose, dark, dark moods.  Snappy and miserable, to the point where I couldn’t see a way out, now I get “dark cloud” periods but this just came on all of a sudden for no reason and with a holiday on the horizon and the fab gigs we were attending I just hated myself for being in such a dark place.

I made the decision the tablets needed to stop, I had managed four weeks and I had seen no change in the pain levels, the changes I had seen had been awful and I would say almost put me to the brink of questioning my life?  Two days ago I stopped them I won’t feel the effects immediately but I know that the poison is already working its way out of my system.

I am really fed up of having medication after medication thrown at me, being told it will fix me when I know I am unfixable.  Maybe it is time I spoke up and said no, this is my body I decide what I do with it, what I put into it and nobody can stop me!

FSA Festival – Day Three Part Two 

We walked into the Fort and the sound of Grim Fawkner was already resonating around, the guys were prepared for me and seeing they had sold approximately 400 tickets a space to the side had been saved so I would be able to see the whole show.  Grim’s is an antipodian musician who’s guitar skills are just unique, I first saw him at Gulliver’s and was mesmerized by his sound.  It is so much more than just playing the guitar, it is percussing using the guitar as well.  His voice has a deep rich tone and he really did have me enthralled.

Now I’m sure people think I’m really rude when I go to a gig, I don’t speak to many people whilst acts are playing and I will discuss this in another post, which will be quite ranty.  I like to concentrate, listen, to focus on what I’m hearing.  I don’t think I’m a musical expert but I know what I like and if I don’t listen I can’t have an opinion.

Anyway Grim had to at some point tell the audience about the levels of their noise, yes they were really making far too much noise that hear was fighting a battle to hear himself sing I think.  I personally think it’s just bloody rude!  These are all talented artistes, they have given up their time to perform for us, the least we can do is shut up and listen.

Following on from Grim was Lucy-May whom I once again had seen a few times that week, it was a repeated set which was just as good as the previous two that week.  The songs are catchy and fun Whirlwind always gets you tapping your toes at the end.

D’Arcy we were unsure would even be making an appearance, he had been a topic of discussion over our supper.  Just a few days before the event his band had decided that Country Music wasn’t for them, so they walked out!  Now giving D’Arcy his due he turned up, got up on that stage before the headline act and gave it his all.  It might not have been what he wanted but his story got the Fort fully behind him.  Of course being an acoustic set the tempo wasn’t as “warming up” as maybe a highlight act needed but I don’t think that mattered in the end.  He offered us a great performance, I wish him every success, I hope he finds his direction be it with a band or as a solo act.

So the stage was set, Wayne came up to make the announcement, here they were after all these years he had done it The Cheap Seats were back at Fort San Antone.  The place went wild, one song down and things weren’t right you could see Ethan struggle, feedback!!  He ripped off his headmic, he was old school he didn’t want anything that was obviously causing problems.  Only the issues continued, it had to be the monitors, the sound engineers flapped about and I could see Andrew getting frustrated.  This is where being married to a DJ/sound engineer stresses me out.  By now the headline act was saying to the sound guys that it had to be them, nothing had changed since 4pm!  Andrew kept mumbling the only thing that had changed was the addition of 400 punters!!  He knew what was wrong but couldn’t do anything.  Then the performing stopped, the sound was too bad, the decision made they would stop using the in house sound system and bring in their own rig.  Andrew jumped up and said I will help, I can engineer it, no one else can.  With that he was gone, next he was carrying in speakers and rigging them.  Ethan was busy telling tales of the “old days” and in ten minutes the job was done, in fifteen the sound check was completed too.  

They were good to go again and suddenly we had a headline act that could actually perform properly this time.  They did raise the roof of the Fort too, not only performing country songs but we had some great 80’s covers, it was an awesome  mix of tunes from all eras.  The place was packed, the dance floor was rocking with line dancers and it really was like the “old days”   Sadly all too soon it was the last song and with a bloody long journey to Walsall ahead of us, we didn’t hang around.

Now where to start after three days like that, the first thank you’s have to go to Wayne, Jess and the team at Fort San Antone, yes there were issues with sound but on the whole it was an amazing weekend of music, we won’t remember it for the odd squeal of feedback.  We will remember it for bringing together a great lineup of acts, a good bunch of people and making sure we all had fun.

I would also like to thank everyone who took the time to come up and personally say hello, give me a hug and seek me out.  You made my weekend a lot more tolerable, it was hard bloody hard that is the nature of chronic illness but I got through it and I will get through the next event too. To Gareth and Dee thank you for my song, as always you make me feel truly special, when I’m feeling at my lowest you have a way of lifting my heart up and just making it that little lighter, so thank you.  To Luke, thank you for your shoulder, on Sunday when I had my meltdown, I was cold and in a huge amount of pain, you were just there for me, with a supportive hug and you even made me laugh.  To Pete at W21 my team member thank you for your ongoing support always :). My final thank you has to be to my hubby who puts up with so much crap, he gave up his drunken weekend and once again nursed me throughout.  It must be impossible and frustrating to sit and watch someone you love in so much pain, to brace them so tight until it hurts to stop the pain but know you are doing it to help.  He is always there by my side trying to help but at he same time rushing around trying to help others, as and when they need him, he truly is amazing.

So if you didn’t make it to FSA boy you missed out, but I think you worked that our for yourselves, the buzz on social media has been incessant, the one thing for certain is next year will be a sell out.  Count me in !!

FSA Festival – Day Three Part One

I had climbed into bed in agony and because of that managed about two hours sleep, its called Painsomnia, when the pain is just too much to let you sleep, its bloody frustrating I can tell you that much because I was just so damn tired.  I wanted to enjoy myself so much, to kick up my heels and have fun, people must think I am a real killjoy but I just hate not having fun.  Both nights I even started the night by having one drink but it just made me feel so sick that I stuck to my isotonic drink, its safer that way.  Why end up in hospital in somewhere like Preston when I can just be sensible?

Anyway after another rough night Andrew went off to breakfast and I pottered around and started to get ready to check out, by the time he got back I had already had my cup of tea and most of our things were ready to go.  We got washed and ready and headed to Preston, we were picking Luke (of Luke and Mel) up from the train station, with that done we then headed to the Fort.  We arrived with plenty of time to see Lisa Wright another W21 artiste, the Fort was a little quieter at this stage, maybe it was the hangovers kicking in but Lisa still got a warm welcome and with her wonderful act she got a rapturous round of applause.  This was always going to be a tough time slot, the Sunday afternoon when you have to wake up the drunken bums, get everyone motivated for the day and ready for the headliners that night.

Following on from Lisa was Acoustic Journey, now before this weekend I had only heard their name as a band, I knew they were three lads.  On Friday I was introduced and we got to know one another, we were all soon saying Hi to one another and they were part of the Country Music Family.  Well I am shocked and disgusted that i have not listened to these boys before, bloody hell, they were awesome.  Where the hell did Jonesy get that voice from, well in discussion it turns out he used to be in a choir in his youth.  The three of them are such a lovely mix of personalities and i think it comes across in their music, they played tracks from both their old and new EP’s.  Andrew’s favourite being “British Summertime”  meanwhile I loved  “Real Good Feel Good” it just had the the real traditional country feel to it.  I was actually blown away by how three boys from the Shires could sound like this.

Most Ugly Child followed on, now to hear a southern drawl when a band are singing and have this expectation of how they are going to sound when they stop playing is very strange.  Then they speak and they are “proper Northern” and you outwardly chuckle, its just not what you expect.  I suppose neither was their music with the name Most Ugly Child, the name didn’t really match the band.  So they had our attention and especially Rob from 2Country Radio he was really loving this band, whopping and whistling.  They were really enjoyable, one of the bands that stood out because of their name not because of their song titles.

Next up were Honey Ryder who are up for three awards at the upcoming BCMA’s they have had a very busy year and topped this off with a very polished performance at the Fort.  It was well received and they joked about how they hoped to win something on Sunday at the awards or they would have to practice their “Oscar” losing faces.

Finally it was time for our headline act, none other than Laura Oakes, again another W21 artiste.  Once again this will have been the third time I had seen her in a week but in various different scenarios, this time she had the full band.  The thing I love about Laura is she always makes a full effort, the band wearing the same outfit and she was wearing a very sparkly dress, never have I seen her just throw herself on stage because she “can’t be bothered”  She threw in her fabulous cover of “Rocket Man which she does so well, the whole performance was just excellent and a great way to round off Sunday afternoon.

As part of W21 I had been asked to help on the merch for the first time that weekend, so I headed down and with the help of Luke we made a few sales.  The highlight of my weekend being him upselling his own CD to a lady when she had no clue who Luke and Mel were.  I told her they were absolutely brilliant!  It was the first time for the whole day I had laughed, so thank you Luke for making me giggle.

Once we finished we, the Acoustic Journey boys, Luke and Mel, Pete from W21 and Andrew & I all headed to Lytham St Annes for Fish and Chips we found this most amazing restaurant and enjoyed some down time and more laughs.  It was nice to be in good company, just having some fun, this paves the way for the BCMA evening too!  With dinner done we headed back and soon our FSA Festival would be over for 2015! 


FSA Festival – Day Two Part Two

Knowing we had a 30/40 minute drive to and from our hotel meant there was a good chance we weren’t going to make it back in time for all the acts.  We looked at the evening schedule but it wasn’t correct I knew the second act wasn’t coming until Sunday, so there was some juggling around happening.  We just took our time at the hotel, after all I needed to get warm, medicated and ready, otherwise I wasn’t going to make it through the night.  That was when Andrew made his decision he wouldn’t drink this weekend, the plan was I would drive this evening but with the pain levels as they were, there was no way I was safe behind the wheel of a vehicle.  So he gave up the idea of drinking and to ensure I was as comfortable as possible, braced up my hands to try and stop the severity of the pain.

We head back up the motorway and arrived just after 8pm, we had missed the first evening act which we found out was Kim Tink, I was really disappointed about it and did apologise to her personally.  Hopefully I will get the chance to hear her at an event soon, although I have listened on Periscope to her having a little “jam” and I enjoyed what I heard.  We arrived as Holloway Road where wowing the crowd and it really was a crowd, the Fort was much busier than Friday night.  We found some space down near the bar and once again grabbed a bite to eat first.  The impressive part of the Holloway Road set was when they bought Jacob Bryant of John and Jacob fame on stage to enhance their performance, as if it needed any more enhancements. It did bring that little bit more to the show though, the trumpet just sounded amazing.  Its always good to see Jacob on stage he is just so damn talented, so that was a real coup by the HR crew.

From the real uptempo set of HR we next had Frankie Davies, who personally I would have put on before Holloway Road as it just bought the mood down a little.  She was really good though, I liked her sound plus her backing band was mainly female which stood out to me as quite striking.

Bringing the mood back up in the room was Raintown.  They have just completed their UK tour and you can tell they are riding high on this success.  Having seen their set three times in a week, this was the best by far, they were on absolute top form.  You couldn’t tell they were all exhausted from a week on the road but they just rose to the challenge that the Fort presented, they gave us tracks from both albums and of course the wonderful cover “One Love”  Even the cover of “Wrecking Ball” is growing on me, it isn’t one of my favourite songs but Claire sings it so well.  By the time they finished the audience were really hyped up, we nipped down to have a couple of photographs taken, something we hadn’t done all week.

Then we rushed back just as the Pauper Kings were starting their set, now I must confess I haven’t seen these guys “live” since the Rascal Flatts gig when they were still McKay Band and wow have they evolved!  The sound is just more grown up, deeper, real country.  You can tell they have worked with some of the best country song writers out there and they have worked hard on polishing up their performances.  A couple of people commented how they didn’t like these guys and I was left wondering why wouldn’t you?  They looked good, sounded good and they had the audience jumping, what boxes didn’t Pauper Kings tick?

So as once again we headed over to the after party with The Ash Cooper Band, yes we stayed for a little while on the second night I reflected on what a great full day of country music we had experienced.  How could the Fort top this?

Tomorrow was our last day, how was I going to cope?  In the meantime we needed to get back to the hotel, get some sleep and then check out!

FSA Festival – Day Two Part One

OMG Which bus hit me?  It must have been a combination of sitting for too long and then standing for over an hour or so because I was already broken and it was only Saturday morning.  I had two full days to go, how the hell was I going to do this?  I woke at 9am and the room was spinning, I was in pain and I just wanted to go home.  Nope I didn’t have a hangover that was the biggest bitch of it all, I hadn’t got drunk, if I had then maybe I wouldn’t have been feeling so grumpy.  I fell back to sleep, Andrew stirred me and asked if I wanted to go to breakfast I declined, he woke me at 11:40am asking what we should do.  I said he needed to help get me ready and we would go.

Of course the traffic through Preston was not going to be kind to us either so we were a little late arriving, but did make it for most of Toria Lynn’s set.  Toria is one of W21’s artiste’s and she is supported by Howard her guitarist, the sound issues from the night before seemed to have diminished, along with half the stack of speakers!  Toria sang beautifully, her confidence is growing with every performance and you can see her blossoming on stage.  It is a real pride we have as W21 to say she is one of ours!  Despite it being early, she received loads of applause and cheers for her polished performance, so that shows just what a great job she did.  Being subjective is really hard when these guys are your friends as well as artists but I have to try and be as honest as possible, Toria really pulled it off and I am not just saying that.

I had been told about the next act and was getting ready to “Periscope” just so her brother could see her perform.  Jodie McKay is from Essex but her brother is Glenn Mitchell who lives in Nashville, Jodie’s songwriting is from the heart, it is all about events that have obviously shaped her life and you can see the passion with which each and every song was sung.  I loved her performance, I know she wasn’t everyones cup of tea but that is the thing with this type of event, we are there to try out twenty different acts and to take away some we will like and to leave some we won’t.

Blue Genes Trio were sadly down to a duo due to ill health, but thanks to the incredible lead vocals of Megan, who I was told was only 12 years old she held the performance together.  Now I would have put Megan at 16 but wow that voice at that age, someone needs to sign her up NOW, she is going to go far.  Blue Genes Trio have their single going live this week, so I wish them every success, I just wish we could get back to the Fort for the Launch Party.

In between all of this Mr W was off doing photo’s for W21 he was such a busy boy all weekend, so on occasion I was just sitting in the main performance area, but people would just keep checking on me, making sure I was ok.  I wasn’t left alone by my Family for too long.  Fitzwallace performed and having seen them at the Laura Oakes EP Launch night and loved their stuff, I knew what I was letting myself in for.  I was soon tapping my feet and jiggling along waiting for hubby to come back.  By now the Fort was getting busy, it was nearly afternoon headline act time.

Now Emma Jade Garbutt what can I say, she is the sweetest, loveliest, funniest person you will meet.  Party animal, hell yeah !!  I was watching her and the lads the night before and I have to admit I was a little envious, oh to be her age again.  She got on stage with the support of Ash Cooper and Alex Leventhal,  she has a beautiful voice and covered two of my favourite Sugarland songs, which instantly reminded me of my DD, Katie.  I found the performance had much more comedic value until Emma sang Luke Bryan’s “Drink a Beer”  she bought tears to my eyes.  It was generally a fun, silly, good natured set and one that won’t be forgotten in a hurry.

Which brings us to the Afternoon Headliners, Dexeter, can I be unbiased?  No !  I loved them, as usual, they were brilliant, Dee commented that she was worried about the sound quality and I mentioned that a speaker stack had been removed, so feedback seemed to have been reduced.  She sang her heart out as she always does, Dee has one hell of a voice, one of the best voices in UK Country Music IMO.  Both Gareth and Dee knew about my bad day and when they once again dedicated Older but this time just to me, I had tears, trickling down my face.  That is why I can’t be unbiased.  Everything they do for me with love.  I’ve never known two people so giving,  Their whole set, and it was lovely to see Jim and Paul on stage once again was polished and brilliant.  Having just had their week with Raintown, you could see the confidence exuding from them, yes they were tired but they were still feeding off the audience, they loved the buzz.

So as the last applause died down the Fort closed for a couple of hours and we all went our separate ways to get ready for an evening of partying.  We went back to our hotel, so I could have a shower, to try and get some heat in my bones, to take lots of pain relief and lay down for half an hour maybe that would be the respite I needed to get me through an evening full of partying UK Country style

FSA Festival – Day One

I can’t believe it is already a week ago!  Running our own business and doing crazy stuff like putting a big red cross through three days back in March with the three letters FSA is slightly mad, people don’t seem to be able to comprehend that Andrew is entitled to time off.  God knows what is going to happen in just over a week when we fly to the States, doors to manual and phones off, all the DJ’s will go into meltdown!!  

We made the decision we would take a steady pootle up the M40/M6, this was so we could check in at our hotel and then mosey on over to the Fort.  Well the M40 was fairly kind to us, it was busy but not awful.  On the way up we played cat and mouse with Erica and Rob from 2Country Radio until we got to Warwick Services, then we all stopped for lunch.  It’s the first time we have properly all sat together and chatted and I think this set off the tone for the weekend ahead for me.  Food consumed, toilets visited and we were soon back on the road.  However the M6 was being a total pain in the read end, stop, start, mainly with lots of the stopping variety.  For a journey that should have taken us roughly three hours, we got to our hotel six hours after we left home!!  The amount of tweeting, facebooking and generally chattering between the two cars to keep one another motivated it was fab.  Like I say it set the tone for the weekend, I was losing the will to live on that journey, the pain was excruciating too, my hips were not happy bunnies after two hours, so after the six they had completely had it.  I got out of the car at the hotel and had to “pop” my SI joint back in and yes it really is as painful as it sounds.

With the quickest wash, change and unpack we then headed to the Fort and you guessed it Friday night traffic round Preston was being a total bitch too.  As we neared Freckleton the only road into the place we wanted to go was closed by Police.  At this point I was bereft and Andrew was busy checking sat nav, how the hell do we get to this place?  So we just followed all the other cars that must have wanted to get to Wharton.  Finally we made it to our destination, if you haven’t worked it out Fort San Antone is really in the middle of nowhere, that would be my only critique.  It is somewhere between Preston and Lytham St Annes on the way to Blackpool.  That is where the complaining stops, it is a caravan/camping park and it does do accommodation BUT due to my health we booked a hotel half an hour away so I could get some proper rest, the hotel we had stayed at when we went to the Lake District in fact!

We arrived, made our entry and the Fort is fab for my wheelchair, lots of ramps and one level, the ladies has a really well laid out toilet, all nicely thought out.  Then the hello’s started, the hugs and kisses.  This is where I love our Country Music family, young or old there is no discrimination it is just a huge get together of like minded people.  Soon we were meeting new people, new bands and the family was growing. We got to the table where everyone was eating and ordered food/drink, this would sort us out for the night and then we could enjoy the acts.  The food at the Fort is amazing such great value and so much of it, I ordered and didn’t realise Andrew wasn’t going to bother, when it arrived I picked at the meat from my “Barm” and then Andrew had to finish it off, the portion was just far too big for me.

Soon it was time for the acts and we had the pleasure of Liv Austin up first, sadly I was all the way over by the bar so didn’t get the full potentional of her performance. I have seen her before so I am confident she was awesome, although speaking to her after she was conceded because she was the opening act she was really nervous and wondered if it showed.  From where I was sitting it certainly didn’t, I’m not sure if anyone else would have a different opinion?

Next up was Ellie Dibden with her band, this young lady was fighting against a tide of sound issues and as this is the first time I have heard her I feel it would be unfair to be to hard to critique her performance.  I liked her song choices, some good covers that we knew and could sing along to but with the PA issues even from where I was sitting you could tell she was struggling. I would love to hear her live again so I could give her a fair and just opinion of her talent.

Andrew and I then moved across the venue as we felt we weren’t getting the best of the performers, plus Luke and Mel were due on and we do love a bit of these two.  So we headed to the stairs where everyone had congregated, I had been sitting for so long I was now in so much pain I couldn’t sit down in my chair, so asked Andrew to get my crutches, I stood with the rest of the crowd and watched Luke and Mel blow the roof off the Fort, along with Jess and the Bandits.  In fact Gary Quinn followed suit, the last three acts were all powerhouses and showed it, they just knocked all our socks off.  Jess is doing a UK tour at the moment, we are due to see her at The Borderline just before we head to the States, she’s a Texas gal who packs a punch and I loved every bit of her act.  I can’t wait to see a whole show, Liv Austin who opened the show is the opening act at The Borderline show so that will be an interesting night!

Gary Quinn and Luke & Mel are all really good friends, we have seen them before at Gullivers, C2C and they never fail to disappoint, their guitar skills are second to none, they just have talent oozing out of every pore.  They all seem so at home at FSA, which I suppose it is a home away from home, this proves it with their confidence.  Well done guys I look forward to the BCMA’s and keep everything crossed that you are shown by the Association just how amazing you really are.

As the after parties started up courtesy of The Ash Cooper Band, Mr W and I headed off, it had been a very long day with lots and lots of miles.  It was already 2am and we needed to be back for just gone midday.  It was way passed our bedtime and we both needed some rest, so we winded our way back to Preston and hoped that the roads would be kind to us on Day Two.

Alternative Therapies for Chronic Illness

Last year I saw my consultant for Postural Tachycardia and he complained that “we” as a nation were too reliant on Western medicine.  He felt that more alternate, Eastern cultures should be practiced and whilst I was in the middle of a severe crash at the time I was furious for a Consultant for basically shoving me out the door telling me I was wasting his time.

When I saw my physio a few weeks ago, she offered me some acupuncture and I have just completed a three week course.  This being based on energy paths and relieving pain.  I was of course sceptical after all how was this tiny hollow needle going to help but after the first visit, it did have the strangest effect.  As soon as I went into the room for my consultation I was in tears and unable to move my shoulder, I even needed Andrew’s help to get my jacket off.  By the time the session was completed I redressed myself, it was a very odd sensation to feel instant relief.  However it only lasted approximately 12-14 hours and then I was back to square one.  Over the next couple of weeks we carried on and I could see the needles pulsing, feel the “puff of smoke” as one was inserted and definitely felt the benefit but it was so short lived, only lasting one day at most.  Therefore it was something that couldn’t continue be it via my Doctor or something we would pay for ourselves, there just wasn’t the long term benefit.

Around the same time I arranged to see an Osteomyologist at Bryaar House, now we chatted at length about my “bendiness” I didn’t want to end up damaged in the process but with my shoulder and neck causing me so many issues I was at my wits end.  The first week I went along it was quite a long assessment with some adjustments due to problems in my cervical spine.  Not all EDSers can cope with being adjusted, I found some relief but within a couple of hours and a swish of my hair had clicked my neck back out of position.  It was a very relaxing process and having someone go hands on using reflexology which is something I actually enjoy despite really ticklish feet!  It wasn’t until the top of my knee was touched an I nearly leapt off the bed, I was asked did it hurt or tickle?  I explained it was a nerve pain and I had experienced it all my life, then a huge jigsaw piece was placed, that was a link to my stomach.  After that first week I felt like I had been hit by a bus, I went home cuddled up and used heat packs on my joints.

Appointment number two soon came around and the benefits began to outweigh the fatigue I felt after the appointment, in fact, I wasn’t coming home so exhausted. On my fourth appointment my neck decided to stop allowing adjustments, that was frustrating because I could feel it needed cracking.  That was the week the scoliosis was found in my spine, it is quite small at this stage but I need to discuss it with my GP.  Is it because of my Osteopenia or is something else underlying?

Last week I went along and we tried something different, its called Cupping, after we had done all the other bits and pieces.  This is a suction method of drawing a vacuum into a little cup, so it brings the blood flow up to the skin to promote healing.  we are predominately doing it around my left shoulder and it seemed to have good effect this week.

So I haven’t given up on Western medicine but I am trying out some alternative therapies, they do seem to be having a good effect on my mental state if nothing else.  Spending an hour relaxing, whilst someone tries to relieve your aches and strains is lovely and that is just what I get to do once a week ….. Bliss !!


The cold weather is on its way, I can tell, my joints are aching, particularly my feet. This is not good news and probably the bit where S.A.D. hits because this means the nights draw in, the pain ramps up, so it’s best to stay at home put the heating up and also cuddle up under a duvet with a hot water bottle or my new wheat pack.

However my O.T. has supplied me with braces for my hands to see if that helps with regards the pain and funnily it does.  When she fitted me with them she explained they were for occasional use and not to become dependent on them, now I can see why.  Over the weekend I lived with my hand braces on the relief I feel from having my hands strapped so tight is good.  I felt like a naughty schoolgirl just keeping them on until the end of the day but it was better than the continual dull ache in my hand.

Now my feet have started and I don’t have any kind of bracing for them in fact that would be impossible because of shoe sizing.  Mentioning shoe sizing, in the last eighteen months my feet have shrunk two shoe sizes!!

The other amazing brace I’ve been supplied with is for my shoulder, it doesn’t help the pain, it just gives me really good support through the joint.  That is one thing the OT at the Stanmore have got spot on is my bracing so far next time we are there I will speak to them about my foot pain and fingers, like I say winter is on its way I can feel it in my bones 😔

Our Song

My love for country music has never been and never will be a secret.  We do love the big American artistes, however supporting the up and coming UK country acts is something very dear to both Andrew and my hearts.  

Many moons ago I went to a gig and following that concert got a friend request on Facebook from a chap called Paul.  He told me all about his band and I started listening to his music and I fell in love with their sound.  Yes I’m talking about Raintown!  At C2C 2013 I dragged Andrew along to their pop up stage in the O2 shop, he had no clue who they were.  I introduced him to this amazing couple and their fantastic sound, just like me from that moment he was hooked. We started going to as many gigs as we could whenever they came down south, and thankfully we became firm friends.

It became more than that, the pop ups introduced us to lots of other acts and over the years we have been introduced to not only acts but bloggers, radio presenters, photographers, managers, you name it we have met them and we are all friends.

This is where Annette and Dexeter come in, remember when my NJ was fitted and they turned up and sang in my front room, that is just one of many of their acts of kindness.  Every gig we attend they dedicate a song to us and I honestly well up with tears because it is meant from the heart, they know how much I struggle on a day to day basis, and they just “get it”

So on Sunday evening we went to The Slade Rooms, I was aware a song was being written about us, Dee had mention that it probably wouldn’t be ready but if Gareth had his way, he would make sure it would be sung for us that night.  I had put it to the back of my mind, completely forgotten, thanks to the brain fog and the piles of medication I am on.  So imagine my shock when Gareth suddenly announced mid gig “Sarah you are getting your song tonight”. Well my heart rate jumped twenty beats a minute and tears sprang into my eyes!  They started singing “Older” which they normally dedicate to us and I just sang along, hoping to keep it together.  All too soon Gareth was explaining about “our song” which is called “Weight of the  World” and how it had come about, he told everybody about this blog, that on occasion he can read it and it will bring him close to tears.  It’s a song about love and strength, how we are always there for one another no matter what.  By the time he had finished speaking I was already in tears, reaching for Andrew’s hand and to be honest I didn’t stop crying throughout the song.  It was beautiful and sung from the heart by two people that truly mean so much to both Andrew and I.

The song ended and there were hankies being handed around the audience, I think it had the desired effect there weren’t many dry eyes in the house. So thank you Dee and Gareth for being so special, after being so heartbroken last week I really do realise that …….


So to all my country music family, but especially Dee and Gareth, thank you for making me feel part of a family when mine turned their back on me, you don’t know how much it meant when I was feeling so low ❤️ I love you guys xx