The POWER of people

I sat in disbelief, faced with the daunting prospect of fundraising, I could not fathom what was happening both with my body and the fact the surgery was not undertaken in the UK. We had at the least £55k to raise to make this possible, whilst my condition continued to decline. The mountain that I was already trying to clamber, suddenly became much steeper.
On the evening of 27thOctober 2016 myself and Nick opened the crowd funding page. Sat at home we thought of the name ‘Ali’s fight for fusion’, we worked together on writing the information for the page. We initially found this quite a challenge, there was such a long history regarding my health and what brought us to having to fundraise that condensing it seemed impossible. Emotions were high as we went through everything, many hours later we had finished. We read it repeatedly, it was imperative the seriousness of the situation came across along with a brief history of what brought us to this point. I had such a sense of unease, very weepy knowing in the next few minutes this page would go live and be out in the public domain. On the whole I am quite a private person, this wasn’t just going out to my friends list on social media this was a public page, open to all. I suddenly felt very vulnerable, unsure of how the page would be received, worried what people would think of me and the true extent of my health issues out there forever. At the same I was determined to fight for my life, a better life and to raise as much awareness as possible of these rare conditions.
Enter…the page went live. I remember walking to the kitchen with my cup of tea, sitting at the table staring into space. It felt surreal, never did I imagine I would be in this situation. This is something you read about and donate too, not something that happens to you. All the charity runs I had participated in over the years, raising money for causes close to my heart and now the tables were turned. Nick called me into the room, gave me a cuddle and told me to look as he turned the computer screen towards me. Within minutes the page had been shared countless times, donations and messages of support came flooding in. Tears rolled down my face as I began to read the heartfelt words from people.
So many people came forward with the most amazing fundraising ideas, messages of support and continually shared the page on social media thus spreading the word further afield. I was taken aback by the response from friends, old school friends, past work colleagues to people I had never even crossed paths with in my life.
Within the week media were contacting Nick asking if they could cover the story. I didn’t like the thought of being in the paper but knew it was essential to spread the word and raise awareness. Nick had to give me many’ little talks’ of encouragement along the way, amazing chappy. Nick spoke with a journalist from our local newspaper which was the first article to go to print followed by journalists from other papers. Within a matter of 10 days the story had made 3 local newspapers and national news online. It felt very strange seeing my face in the newspaper and reading each article, again like I was reading about someone else. No matter how hard I tried I just could not get it to sink in.
The week we returned home from the consultation in Barcelona a reporter and cameraman from Granada came to the house to interview myself and Nick. I was exhausted from the trip; my symptoms were out of control. I had to dig deep as to get some coverage on regional news could really help the fundraising and awareness. I was grateful for the opportunity. Both the reporter and cameraman were lovely, they instantly made me feel more at ease by saying they were just going to informally chat with us about the condition and fundraising. The cameraman had set up, I remember him struggling with the glare coming off my glasses, he had asked if I could take them off for the interview “I can but I’ll be talking to the wall, I can’t even see the reporter sitting right next me” I said, we all had a giggle and decided the specs were to stay firmly on!! We chatted for well over two hours as the reporter made notes and asked questions, sometimes he asked the question a few times as I was nervous and my voice a bit wobbly. I went through everything that had led us up to having to fundraise, knowing full well 95% of the content would not be included as this was going to be a very short segment. Throughout the time, I thought the reporter was gathering information and getting me used to talking with less nerves however to my amazement when I thought the ‘practice’ was over and we would do the interview I was told we were finished. They explained they will cut/edit and piece an item together when back at the studio in the hope it would be aired that evening. Sure enough it was aired that night and cut short due to the football, absolutely fine by me I thought as I could not bring myself to watch it. I sat with Nick on the sofa whilst he watched it and I covered my eyes, not many people like to see themselves on TV. Within minutes the segment had been shared on social media by many people, still having not watched it I found myself in tears again. It felt very surreal, I took myself off for a little cry and had ‘words’ with myself. I told myself to toughen up a bit that the story was out and people were helping and wanting to help, this was positive. On reflection, I think my issues were more with the fact I am such a proud person and having spent years hiding so many symptoms that suddenly I was in the public domain with an unmissable neck brace on, looking quite thin and the true extent of my health issues finally out there, it made me feel quite exposed and now I couldn’t run away from what was happening.
Over the weeks and months countless people came forward organising fabulous events. Never did we envisage the level of support that we received. Friends, family and people I had never even met generously gave their time, effort and love to host various successful fundraisers. Everyone was mucking in and helping in any way they could. It was very emotional for us to see first-hand the lengths people were going too to help and I can assure you many a tear was shed over the fundraising period, I was so overwhelmed and taken a back. Although I could not attend the majority of events due to my health I took great joy looking at the pictures when they came in of people having fun, giggling, munching on cake, having a drink and a good chat, zombie walks, teachers being pied by students, people cycling, swimming, playing football, walking in gale force winds on Blackpool front, auctions, collecting in the community, beard shaves…the list is endless. More than anything, I loved the fact it was bringing people together.
I will never forget the day I was on route to the hospital, stopping for some water at the shop when a dear lady came over to me and placed £20 in my hand saying she had seen the story on the news but didn’t know how to donate online. I told her I could not accept the money but thanked her so much. The £20 note was passed between us for a few minutes to the point we both started laughing and the shop assistant said he would settle it by taking it himself. I gratefully took the kind donation and gave the lady a big hug thanking her from the bottom of my heart for being so kind and thoughtful. We had a little chat together before I had to make my way to the hospital.
Over the month’s cards would arrive through the post, sent from my local newspaper office where people had gone in with a donation as they did not have access to a computer. I was so touched that people had taken those lengths of making their way over to the office and handing in what were the loveliest cards with very moving words inside.
Donations continued to come in and I made sure I looked at each and every name and in my head gave a little thank you each time. So many names were unfamiliar, donations from total strangers that had read the story and taken the time to donate. It meant so very much.
In November, a shock anonymous donation of £10k came in, we could not believe our eyes. Initially we thought they must have entered too many zeros on entering the amount and were awaiting contact from the crowd funding site we had used to tell us it had been a mistake, no such call occurred. We sat in astonishment, again tears from many, this gave the fundraising such a boost. Around this time we thought we could actually make this target, we could do this. The newspapers took the anonymous donation story on and again it was shared around social media keeping up the momentum.
My family, Nicks family and friends went out into the community handing out collection boxes, posters and events posters. So many local businesses kindly agreed to have them in their shop, the staff were lovely often asking how I was doing and what else they could do to help. This was amazing, not only increasing donations but also raising much needed awareness.
Awareness….one of my main aims. As the fundraising went on I found myself receiving more and more messages on social media from either people with EDS wanting to connect and chat which was fantastic to quite a few parents contacting me with concerns about their children’s EDS or suspected EDS. I would respond with advice to the best of my knowledge and sign post them to EDS savvy consultants around the country to try and save them some time on the merry go round. More and more people were talking about EDS and sharing articles on social media. This meant an awful lot to me as EDS can be a very invisible condition, yet extremely wide spread and cruel, the fact people were coming across articles and recognising those three letters meant awareness was actively taking place.
Having to fundraise is such a daunting prospect, you worry you won’t make the target, you worry what people will think of you, you feel exposed and vulnerable, stressed you can’t help more and get involved, sometimes even feeling guilty. However, as time went on it became apparent that nothing but positivity came from our fundraising experience. As I got used to the fact my health conditions were now out for all to see and read about, I realised I have nothing to be ashamed of, I have not asked for these cards to be dealt and I’m trying to play them to the best of my ability. A weight felt lifted from my shoulders, all those years of hiding symptoms and pretending to be normal it was a fulltime job in itself, that could now stop. The real driving force behind the change in my thinking came from the way people came forward with heartfelt messages of love, fundraising ideas and donations. I don’t think I will ever be able to articulate just what that has and does mean to me. It has been the driving force in keeping me looking and moving forward, never underestimate the power of human kindness because for me it has been a magical medicine on those days I feel I can’t do another minute with the pain.

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As I write this post we have reached £65k and far exceeded our initial target. We are so grateful for this as a few months back we were told our crowd funding site take 8% from each donation and with insurance to purchase and after care the extra money raised will go towards that.
We have been very fortunate along the fundraising journey that an abundance of people came forward to donate, fundraise and offer there unconditional love and support, it is something we will never forget. I am quite a sentimental girl at heart and have started to make a scrapbook documenting the fundraising journey to be able to look back on all the amazing people who supported us.
Nick has put together a short montage of some of the fundraising events that took place over the 6 months, we hope you enjoy watching as much as us. A lovely reminder of the generosity of many.

 

 

 

 

Barcelona Bound

Deep breaths in and out as we taxied the runway, trying to keep my nerves in check. I hadn’t flown in years and knew it was risky with my condition due to intracranial hypertension. I’d already achieved getting to the airport and through check in, this was the next leg. Braced up I closed my eyes as we took off.

A few weeks earlier I had sent my images off to Dr Gilete in Barcelona for review. He had reported Craniocervical instability and recommended a consultation to discuss my measurements and findings further. The lead up to the trip was awful. I did not know how I was going to make it, I knew how unwell I felt going 5 miles down the road to an appointment. Weeks of nerves and military planning ensued.

Feeling the bumps of the wheels hitting the runway hurt my neck but at the same time a huge sense of relief came over me, I’d got there. I’d had a worsening pressure headache about one hour in from the altitude but nothing I couldn’t handle. We collected our bags and headed straight for a taxi to our apartment about 30 minutes away from the airport. Once we reached the apartment I was so proud I’d got there. Any kind of travel and movement is diabolical on my body. I break everything down into stages in an attempt to make it more manageable. I stayed in the apartment for the evening laying flat, my nausea was at an all time high. I went through the various questions I had for my consultation the following day.

Sat with a cup of tea I read my messages from people wishing me luck for the appointment. I hadn’t slept a wink, not a wink. Often adrenaline kicks in when I have to travel which is hard to switch off. Around 2 am I resigned myself to the fact no sleep was taking place and I lay on the sofa with a dim light on staring at the ceiling with the same questions running over and over – When did it all come to this? Why was all this happening to me ? I couldn’t compute the last 18 months.

We arrived at the hospital, the grounds were beautiful donning tall palm trees on either side. As we walked into the entrance we felt like we had walked into a hotel lobby with marble floors and the sparkly clean appearance. We were guided back to the villana entrance and made our way down the stairs to Dr Gilete’s consultation room. After a very short wait we went in. Dr Gilete shook our hands, he was a very warm natured man. We asked if we could record the consultation as I was unable to take everything in at present. This was not a problem. Dr Oliver then entered and we were introduced, again a lovely gentleman.

Dr Gilete guided the consultation initially asking me to discuss my symptoms. I explained to both Drs that I had headaches 24/7 based in the back of my skull with a pulling down sensation and neuralgia. My temples, face, eyes and teeth often had pressure and pulsating pains.  Frequently I could not talk for the pain, my mouth would droop and I would lose sensation in the right side of my face. I went onto explain about the severe vertigo in detail and constant dizziness with the feeling my head is not attached to my neck. I described my head as feeling like the weight of a bowling ball and it physically hurt to stay upright.  Pins and needles and loss of sensation on my right side of my body and I had began dropping items. My nausea and dysautonomia had worsened in recent months. Erratic heart rate and oxygen levels at times. The visual disturbances had increased along with a change in hearing. I told them my neck pain was now 10/10 the muscles like rock, constant muscle spasms and pain deep within the joints. Shoulder pain and weakness in the shoulder and arms, particularly my right arm. I could not bear anything touching the back of my head as the pain would intensify. Choking had become an issue particularly on liquids. I was having trouble recollecting words during my conversations.  “I have lost my life, having to spend 80% of each day lay flat and still”, I said. holding back the tears. Both Dr G and Dr O listened intentivly as I spoke and gave me that time to share my symptoms.

Dr G already had my medical history and existing conditions to hand as I had to send those over prior to the appointment. Dr G said he wanted to hear me explain my symptoms to ensure they correlated with the imaging of which he said ‘they most certainly do’. Dr G went onto explain my images, going through them individually on the screen. He explained that Craniocervical instability was defined by a set of measurements that reach what they refer to as pathological.

Below are a few examples of my images, there were hundreds taken.

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Image of my cervical spine in neutral. The area marked is called the ‘Grabbe Oakes’ measurement. The angle is drawn from the basion to the tip of the posterior inferior C2 Vertebra. Anything 9mm or above (8mm with some surgeons) indicates ventral brainstem compression. In neutral I am 9.2 mm and in flexion 9.4mm thus suffering ventral brainstem compression.  The odontoid (the dens/peg which serves as a pivot point for turning the head) is retroflexed (kinking back) and a mass of inflammatory tissue has grown around the joint known as a pannus formation adding further pressure on the brainstem.

 

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Image of my Cervical spine in flexion. The angle marked out is called the Clivo-axial angle. This angle should be between 150-170 degrees. Anything below 150 is abnormal and below 135 degrees is pathological. Mine is 131 degrees.

 

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This measurement is called the Atlantodental interval (ADI).  This is the distance between the arch of the atlas and dens of the axis. Normal measurements are below 2mm and mine is 5.4 mm. The ligaments within my neck are weak and failing to work as they should causing the atlas to move too far forward on the axis narrowing my spinal canal and causing impingement of my spinal cord.

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Above is some measurements that go towards the Harris measurement. This measurement quantifies how much your skull is sliding in translation. In a ‘normal’ person there should be NO measureable translatory movement. A translation of greater than 1 mm between the basion and odontoid reflects craniovertbral instability. My skull slides 2.3 mm.

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Axial cut which shows I am dislocated even in the neutral position 9.8 degrees this then becomes greater on rotation left and right.

Both Dr G and Dr O explained how there is an ‘abnormal’ category of measurements and then there is ‘pathological’ they told me every measurement was pathological and in no uncertain terms I had Craniocervical Instability and Atlantoaxial Instability. They went onto explain to Nick and myself that this is both progressive and serious in nature. The main concerns being permanent damage to the nerves and spinal cord, the fact my brainstem which controls so many functions within the body is compressed and the risk of vertebral artery occlusion on rotation. As I rotate so far (over double the norm) and subclux I am kinking the artery which interrupts blood flow to the brain which can cause stroke and even death.

I sat in disbelief, when given the opportunity to ask any questions my mind went blank, despite having an A4 list of questions in front of me I could not seem to get my words out.  Nick took over for a time until I got myself a bit more together.  We discussed the surgery and what it entails. Dr G informed me that given the pathway of the artery which winds through the vertebrae and that its the skull and spinal cord it makes it a very complex surgery which doesn’t come without risks, at the same time each day living this way is a risk only for things to deteriorate and the surgery to become even more complex.  It would only take one minor trip, fall or knock which could have grave consequences. He went onto explain that I would need a fusion from my skull-C1-C2 whereby titanium bars, rods and screws would be placed. The surgery would be long and afterwards I would be taken to intensive care.  He described the first few days after surgery as a tunnel whereby the pain is so great you cant see the light but the extreme pain will pass to that of a more manageable pain.  I was told I would lose 50% movement within my neck for life limiting my ability to look up, down and side to side.  Dr G said the recovery is long and I may not see improvement until a few months in once the swelling has gone down. To support the fusion process bone will be taken from my ribs and hip. We discussed surgical fees and timeframes. The consultation ended and both Dr G and Dr O said any questions or concerns I have to not hesitate in contacting them.

On leaving the hospital I contacted my parents, I sat on a little stone bench and gave them a watered down version of the consultation. I felt it more appropriate to tell them the severity in person rather than over a phone call dipping in and out of range.

Once back at the apartment I went straight to lay down the vertigo after the taxi ride had returned with full force.  I felt very numb, almost like the consultation wasn’t even about me and I sat in it on behalf of someone else.  I encouraged Nick to go out and get himself some paella whilst I had a lay down.  As soon as the door shut the tears came flooding, I must of cried solid for over an hour, I couldn’t compute anything, the only emotions I was feeling at that time was overwhelming fear and sadness.  I didn’t want to talk about how I was feeling, I just wanted to go home.

I can only describe the journey home the next day as a cross between a carry on film and hell. The vertigo rendering me unable to walk I crawled (literally) through Barcelona airport, was stopped at security where my bags were searched and had to stand on a podium whilst i was searched thinking that any minute I was going to hit the deck.  I sat in the lounge with my head in my hands, I could not focus on anything as everything was spinning at high speed. Once we boarded I was so scared of being this unwell, so high up in the air we contemplated getting off the aircraft and booking a flight for the next day.  The strong urge to get home overode any possible complication that could occur mid flight. My eyes closed, I took deep breaths waiting for take off, Nick holding my hand as we headed towards the run-way, we had been taxying it for 45 minutes finally we were ready.  Quite literally as the plane was about to take off a passenger pressed his emergency button and we had to return to the gate, the passenger was having a panic attack.  We were another hour whilst the passenger disembarked the aircraft and his luggage was removed.  Normally such a patient and understanding person I found myself frustrated and weepy, I just wanted home.

We arrived in Manchester and my phone was throwing out beeps like the clappers.  Little did I know mine and Nicks family and friends were tracking the flight home and it came up “Aircraft returned to the gate, passenger welfare”, everyone thought it was me god love them.  Nicks parents collected us and his mum got me into the front, they had brought a lovely snuggly blanket for me to cuddle into on the way home.  We had a giggle in the car as Nicks dad had put the heated seats on to keep me warm without telling me. I sat quietly for 20 minutes thinking I’d peed myself and thought how could I get around this without anyone knowing.  It was only when I opened the window as I was hot, Nicks dad said he’d turn the seats off. “Thank God, I thought Id wet myself and thats what the warmth was, Ive been trying to think of ways I could get out of the car without anyone noticing for 20 minutes”!!!!

Never had I been so happy to be home.

Sadly the journey took it out of me for months and my symptoms have continued to decline ever since.

Over the next few days realisation set in of what was ahead of us. The power of people and human kindness came to fruition…….

 

A Real Life bobble head

We got off the train at Euston station, severe vertigo rendering it impossible to walk. I could not see straight nor gage where the floor was. This was to be the start of many more attacks of vertigo, little did I know what the cause was going to be. My partner, Nick, virtually carried me across the station to a coffee shop where we remained until the spinning settled down enough for us to navigate our way to Medserina for my upright MRI scan. It was August 19th 2016.

Despite the multitude of symptoms I’d had over the years, headaches were never one of them. In May 2015 I began to develop the most excruciating pain to date. I had pains in my head 24/7, they ranged from pressure, occipital headaches/neuralgia, pulsating temples, frontal head aches, pulling back of my skull, teeth and facial pain. At times I lost my speech, my mouth would droop and my face go numb. These were headaches like NO other and the fact they were unremitting, I knew something serious was at play. Debilitating neck pain accompanied the headaches along with clicking, crunching and spasms. I became very aware of the weight of my head. Suddenly I felt like I was carrying a bowling ball on a tooth pick and my shoulders became equally as painful. It was terribly debilitating.
The next 15 months were spent in and out of A&E, neurologist appointments and testing. It was a long, complicated and traumatic 15 months, the worst time of my life. I will revisit this time again in my blog but at present its still too raw.

The oh so familair diagnosis merry-go round commenced, starting with a suspected stroke, due to weakness on my right side and facial droop then followed bleed on the brain week. As time went by and more scans were not showing the cause (as they were supine) the avenues of migraine, occipital neuralgia and hemiplegic migraine ensued. I had injections into my skull without anaesthetic due to allergy, all to no avail.

I was losing hope. I had no idea what was causing such pain but I knew living my life like this was not an option. I couldn’t carry on. As time went by the headaches increased in intensity, shoulder pain worsened and the ability to carry my head was becoming impossible. When upright I’d physically hold my head up with my hands at times. As strong willed as I am, at this point I felt I could not go on another minute. I was still employed but unable to attend work due to the severity of the symptoms.  I spent 3 months mainly bed ridden, feeling very isolated and alone. I was losing every aspect of my life, everything I worked for, everything I enjoyed, everything that made me, me was fading away and I didn’t know why.  My world became very small.

Over time I developed weakness down my right side, I was dropping items, severe vertigo, dizziness, vision problems, increase in nausea, my hearing changed, tinnitus, I started to forget words and have problems communicating at times.  I began choking on liquids and solids and found it increasingly hard to swallow. The list of symptoms increased as the months went by.  I had never felt as frightened as I did at this time.

It was a chance conversation with my Shoulder surgeon that put me on the right path. I’d had right shoulder pain for years and was told by many physios it was just a strain. An MRI scan revealed I had 2 shoulder tears (EDS for you) and I was referred to a surgeon. As well as my shoulder the surgeon was very interested in EDS, asking me about my various symptoms. I told him about the current symptoms and the impact they were having on my life. He immediately said it sounded like neck instability as the way I was describing my symptoms was almost identical to that of rheumatoid arthritis patients he had come across with instability in the neck. 

Once home I took to google, I came across articles on Craniocervical instability and the similarities were far too canny. I found a support group on Social media (they have proven invaluable) it became apparent from other sufferers and medical information that the only way to find Instability in EDS patients, due to the mechanics of why we have it is through an upright Motion MRI of which there was only one in the country.  My GP made the referral.

We arrived at Medserina and were taken into the waiting area. The vertigo was so extreme I had no idea how I would sit in a scanner for the next hour, but I hadn’t come all this way for nothing.  I sat and sipped on water trying to focus on one place in the room as it span around me. Nick completed the paper work for me and I signed.

Nick walked me to the scanner and stayed in the room with me. I was strapped into the scanner with a cage placed over my head. First of all, scans were taken in neutral followed by flexion, once I was flexed a bar was placed to support my head and to limit movement to enable a good clarity of picture, the cage was again placed and the radiographers left the room to take the images.  I then had to extend my neck and it was held in position.  It was very painful but I tried to remain focused to get the job done. Then came rotation both left and right. On rotation right I lost the ability to swallow, this frightened the life out of me.  I could not speak as I could not swallow, a groaning came from me and the radiographers ran in and released the bar. I had no idea at the time why that had happened. The scan lasted just over an hour.

We sat in the waiting area afterwards as I felt too unwell to get back to the station. Myself and Nick got chatting to a lady who felt equally as rough after her scan and it turned out she also had EDS and not only that she lived less than 10 miles from me, small world.  We exchanged numbers.  We left the facility after 30 minutes with my images on disk and was told the report would arrive within the week. The journey home was horrific. My head and neck agony after the scan, vertigo still lingering and now nausea.  It felt like the longest train journey of my life.

A few days later I received a copy of my report, it was clear from the imaging I had craniocervical instability. I did not understand everything in the report so I arranged a telephone consultation with Professor Smith, consultant radiologist.  Professor Smith explained that I had a range of motion in flexion and extension greater than 95 degrees and that instability was demonstrated in flexion and on rotation. He went onto say I would need a fusion surgery however this is not yet undertaken in the UK on EDS patients. I could not believe what I was hearing, it was 2016 not 1916!! The professor gave me a few names of world class surgeons, all based in America and said that UK/Irish patients were having to go for surgery over there.

Panic set in, how could I make it to the states? How could I fund such surgery? I read numerous stories of patients in the UK and Ireland having to fundraise to get over to America. One amazing girl had to sail as she was not fit to fly. I felt I was in a living nightmare.  I needed to get the advice of top neurosurgeons as soon as possible.  In the support group there were talks of another surgeon based in Barcelona who had recently undertaken a surgery on a fellow EDS’er.  More and more UK patients were heading over to consult with him, I felt at that time this was a viable option and we made arrangements to have a consultation over in Barcelona for November.  We also scheduled a Skype consultation with one of the worlds leading neurosurgeons in America for December.

It was only when we made the long and difficult journey to Barcelona to meet with both Dr Gilete and Dr Oliver (Europe’s leading skull based surgeon) did we realise just how severe my instability was and the risks involved…………….

A Zebra Life…but why the blog?

First blog post Ali…….NO PRESSURE!!

I guess at this juncture I should explain why I have chosen to blog, my reasoning behind it and what I endeavour to achieve by opening myself up in the public domain.

Since being diagnosed with EDS, POTS, CCI and AAI my world has become smaller, as my capabilities have deminished due to ever increasing symptoms. There is a constant tug of war between my mind and my body.  My broken body is unable to keep up with my minds desires.  With that comes a minefield of emotions whereby these emotions can and do detonate at any given moment.  The unprectitblity of symptoms and capabilities adds further explosive devices to the field and before you know it you’re gently tip toeing through each day hoping a device doesn’t set off.  Essentially each day is dangerous, unpredictable and exhausting.

Through blogging I would like to address the emotional turbulence of  living with a variety of chronic illnesses.  How I feel, how I manage these feelings or don’t in some cases, what are these emotions and what triggers them?

The journey to diagnosis was far from smooth. It was 10 years of constantly being let down, judgements, deflation, anger, upset, fear and exhaustion. There were many times over the years i felt like giving up, at times i lost hope.  I knew something wasn’t right, I knew my body did not function like that of the majority. We spent 7 years intensively going round in circles within the medical world. Sometimes my hopes were raised when something was found “This is it, Im going to get better” only for treatment to fail or have no effect on symptoms and back to the drawing board I went.

When you don’t have a name for your symptoms it makes it even harder for people to understand and to some extent believe.  I found myself keeping a lot of my symptoms to myself, I became a master in disguising my symptoms.  Socialising became increasingly difficult.  I could make a plan with the best intentions but have to cancel due to my health.  I often felt people didn’t understand or thought I was picking and choosing what i wanted to go too.  I began to stop socialising as it was easier than constantly feeling like you are letting people down.

Work became increasingly difficult and I found myself adapting my days, eating certain things at certain times of the day in order to try and reduce symptoms, napping in my car and shorter days. Every single part of my life had to be planned with military Precision, yet I still didn’t know why. I really gripped onto my job for as long as possible but in truth I struggled for a lot longer than I let on.  I loved my job, I didn’t want to lose it.

I hope that blogging will give me the platform to be able to reflect on the past from constant testing, people not believing me, trying to act normal and keep up with others, the loss of my job and at times what feels like the loss of my identity.

From diagnosis to beyond!!  I will never forget ‘diagnosis day’ from the trip, to the consultation itself to all the emotions that came instantly and thereafter.  The diagnosis finally gave me validation and the jigsaw was finally put together. Once diagnosed with EDS in some respects medical doors opened for me and in other respects it became quite apparent of the limited knowledge within the medical community of such a complex condition.  Another battle then began.

I would like my blog to be a true reflection on what living with EDS is like day to day, my experiences of testing, appointments, medical professionals and things I have learnt along the way. I would like to go back to diagnosis day and certain tests with the main aim of helping others who are facing similar.

The hammering as I like to call it!! Shortly after my diagnosis of EDS came what felt like an endless stream of further diagnosis’s within a short period of time.  I remember at the time thinking ‘how unlucky can one person be’ spending 30 years with symptoms and no diagnosis and then they don’t stop coming.

The diagnosis of CCI and AAI was my biggest blow to date.  I really did struggle and still do accepting this.  Having a potentially life threatening/altering condition gives you a constant unease.  Not just an unease of symptoms but an unease of ‘am i going to wake up in the morning’, ‘ am I going to die at 32’, ‘will I be paralysed’, all very real feelings.  A further blow came when it became apparent how the operation was not carried out in the UK on EDS patients.  The only one positive that came from this is that it opened a door whereby I have met THEE most amazing people suffering with the same conditions from all over the world.  Now that I am forever grateful for.

I hope my blog reflects what living with CCI and AAI first hand is like.  I would like to post about the current situation in the UK on this surgery and the position patients are left in.  I would like to discuss the importance of having a strong network of people that really do ‘get it’.

In October 2016 fundraising began.  I personally had a mental struggle with exposing my story and vulnerability.  It did not sit well with me to begin with and I felt very anxious at the time of launch.  The response has been phenomenal, breath taking and overwhelming.  So many people came forward from friends, family, old school friends, past work colleagues and total strangers and have organised the most amazing events, offered support and love.  I will never forget this for as long as I live and has been a huge driving force in keeping me moving forward.

I would like to blog about the daunting prospect of fundraising, everything it entails behind the scenes, media and the power of people.

Rods and bolts in the neck you say???  All being well May 2017 will see me and my family take the journey over to Barcelona to undertake the biggest surgery of my life.  I will be having my skull fused to the top two vertebrae in my neck.  This is a high risk operation given the junction of where the surgery takes place and the spinal cord and nerves involved.  The operation will be tough, the recovery long yet necessary to save my life and ultimately eventually give me some quality of life back.  I will be away from home for 5-6 weeks before its safe to return to the UK where recovery will continue.

Documenting this journey is very important to me as a reflection of hopeful progress.  I would like my blog to discuss in more detail what the surgery entails and my trip to Barcelona for consultation. After surgery my partner will take over the blog  for a time documenting first hand the experience.  I hope to blog thereafter.

In essence my blog will be a little bit of passed, present and future sprinkled in for good measure.  I really do hope you enjoy my blog and walk alongside me on this journey.

Much Love

Ali xxx