Turbulence

As I reflect on the last two months, i do so with mixed emotions. Each day has been very turbulent, almost like a pick n mix bag of emotions, thoughts and feelings. I think the phrase used for Marathon runners when they have hit the 20 mile mark is most fitting “hitting the wall”. I have most definitely over the course of the last two months ‘hit the wall’, repeatedly.

The last eight weeks have seen my family and I having to seek opinions from numerous Neurosurgeons overseas and here in the UK in relation to the rest of my neck. I received a call at the beginning of May informing me I would require a full cervical fusion from the surgeon I was due to have my surgery with at the end of May. My initial reaction was panic, floods of tears and fear, I could not imagine my life with a fully fused neck, not being able to move my head and all the limitations that would bring. This isn’t what we had prepared for. Can people live fulfilled lives with a fully fused neck? Yes, I am fortunate through this illness to have met some wonderful people some of which are fully fused through the neck and some of which beyond that. It isn’t easy both on a pain level and having to adapt but it can be done. Once the initial shock dissipated a little, questions started to flood my mind. The first being, why? This had never been mentioned before in my consultation nor had it in subsequent dialogue over a seven month period. I felt uneasy, I discussed it with family and friends and we came to a unanimous decision to seek further opinions as I could not roll with something I did not 100% believe in. This would be the biggest surgery of my life. We sent my images over to numerous neurosurgeons in America, all independant of each other and the waiting game began for the opinions to come in.

In the midst of this unease and uncertainty saw me having to attend over seventeen appointments. Now, my life of late is a sort of one large hospital appointment, there is rarely a week that goes by where i don’t have at least 2-3 appointments however this time things were a little different.

My first appointment during this time was with Ear, nose and throat as I am unable to breath through my right nostril, a problem I have had for some years but ignored. The appointment was to discuss the results of a CT scan I had of the temporal bones looking for a particular condition, the results came back clear, YES i thought to myself there isn’t yet another problem. The consultant then proceeded to get an endoscope out of the draw and placed some jelly on the end and began feeding it up both nostrils, I was not expecting this and nor was it a pleasant experience. I had just about had enough of these mini hose pipe tests over recent weeks!! He informed me I had a severe sinus collapse and deviated septum which would require a surgery. “You have to be kidding me” off memory were the words of choice. He explained what it meant and what the surgery would entail, we agreed my neck needed to be fused first as no anaesthetist would put me to sleep with an unstable neck so we agreed we would follow up to discuss a time frame in August with the view of the surgery in the new year. The surgeries were just piling up from fusion surgery, impending shoulder surgery for tears and now a sinus surgery. 2018 is going to be great !!

Next came urodynamics testing. What a fun morning that was !! I have been experiencing bladder symptoms for around two years however in the grand scheme of symptoms it was lower down the priority list, yes i have a list!! In recent months it had stepped up a notch and my urologist referred me for urodynamics testing and referred me on to the head urology consultant for review. The urodynamics test was not a pleasant one for me at all, now I was not expecting to breeze through the test but I was also not expecting the pain it caused. I am going to spare you of all the ins and outs (literally) so… in a nut shell the test involved a tube being placed up the urethra and into the bladder and if one hole wasn’t enough they kindly placed one up the bottom too. After a few wails during placement I remember thinking the tube resembled a strawberry shoe lace, remember the ones you got when you were a child from the sweet shop? Theres that fond childhood memory banished!! Next i had to stand up with said tubes placed whilst the nurse tugged to ensure they were in, nice. My bladder was then filled with water and i had to state when i felt i could not take anymore and i felt full. This was testing how much fluid capacity my bladder can take. After this I had to cough numerous times to see if i peed myself on a lovely strategically placed nappy pad on the floor, i remember looking at the ceiling at this stage thinking “ When did it all get to this” I didn’t know whether to laugh or cry. Now came the emptying of the bladder, this was to see if my bladder empties fully and what the pressures are when doing so, i had to sit on a ‘fake’ toilet and pee, simple i thought. well….. it hurt, it stung and as always took me forever to pee in dribs and drabs. Once finished the tubes were removed and I was told the results would be sent quickly to my new consultant with a follow up. I greeted my dad in the waiting room like a rabbit in head lights and burst into tears. Looking back I think I had just had enough of being poked and prodded the last few years.

The next week saw me at Wythenshawe hospital for allergy testing. An MRI of my spine at Salford to review the cyst I have happily resting in my spinal canal and an appointment with a kidney specialist after traces of blood and protein were coming out in my urine and a decreasing kidney function. The specialist was lovely and showed so much interest in my conditions, she also new a lot about EDS which is always a bonus that a doctor isn’t taking to google or wikipedia !! She felt the blood loss was due to a thin kidney membrane due to the EDS and advised to have regular monitoring of kidney function.

The following week I saw my wonderful specialist bowel nurse, she’s such a lovely lady. As my bowel isn’t playing ball at all it is causing a lot of pain daily. We discussed a relatively new drug on the market which acts on the nerves to basically try and get them going a bit, we agreed I would have a trial of this. I then went to see the swallowing team later that week as i have been choking intermittently on fluids and often my throat closes numerous times during eating but thankfully it happens very quickly. My swallow was assessed and it was identified that I have an uncoordinated swallow and spasms, i was given thickener to put in my drinks. JOYS.

Genetics at St Mary’s hospital was the next port of call, this was a long appointment to discuss the possibility of other types of EDS and connective tissue diseases. My DNA was taken (Jeremy kyle style) for testing which will take a few months to come back however the geneticist was quite confident I had hyper-mobility type EDS with some classical cross overs. We saw my wonderful GP the next day to update her on my appointments and to discuss the torrid time I had been having with stroke like symptoms, irregular heart rate, dizziness and low blood pressure. My blood pressure was low that day and she decided she wanted to do some blood tests.

The day arrived for my follow up with the head of urology to discuss my urodynamics. The urologist delivered the news that my bladder was not voiding correctly, the pressure was over double for what it should be for a female with slow flow and residual water left in the bladder. He informed me I would need to start self-catheterising to ensure my bladder was being sufficiently emptied daily. He went onto say due to the fact i found the urodynamics testing so painful I would need a rigid cystoscopy to dilate the urethra as he suspects a stricture and to have a look inside the bladder however with my neck being unstable I could not be put to sleep for this which would be the normal course of action, it could be done under heavy sedation, although i would still feel a lot of pain. He explained to me the correct name for my bladder issues is neurogenic bladder where the nerves are not working correctly, this could be due to EDS or a condition called tethered cord of which i am yet to rule out. He explained I would need to attend a specialist nurse led clinic on 27th June to be tought how to self catheterise and that we would have to see if able due to the narrowed urethra and if its too painful i may need the rigid cystoscopy to widen the urethra under sedation as we may not be able to move forward without it. That day I had another scan of my bladder after emptying it which showed fluid still remained. I left the clinic feeling like i had been hit by a truck. My dad gave me a big cuddle and reassured me we will together get through this next set back. He is my absolute king.

Set backs….. that is exactly what I felt my life had become. There isn’t really a week that goes by when a new problem doesn’t arise, something new to take on, another challenge and I had just had enough. How much can one person take? I remember thinking, this just isn’t fair anymore. There was not one organ or joint that wasn’t affected. I cried a lot that day, i felt angry, sad, frustrated and full of fear. When hit repeatedly with problem after problem it becomes even harder to digest new problems, I often feel too overwhelmed to even allow them to register in my mind. I think that is why I find doing my blog so therapeutic as often instead of talking about my feelings with people i will go quiet, shut off and withdraw and blogging gives me the arena to indirectly face what is happening.

Having no control over my body is a constant worry of whats going to go next, its important to me to keep control over the one thing I do still have a hold over, my mind. I inevitably will pick myself back up time and time again because there is no other option. Keeping the mind strong isn’t easy as the capabilities dwindle, you can’t occupy yourself, you can’t do the things that once filled your time so you have to constantly find new ways of doing things to maintain some level of independence and dignity. At present I am trying to teach myself sign language, it is something I am able to do without causing too much pain, it keeps my mind occupied and i hold onto the thought that maybe one day i could use it in a capacity of helping others. It is currently giving me a purpose.

The following week i received a call from my Gps practice regarding my recent bloods and have been called in as some abnormalities have been picked up on my renal and liver function tests, hopefully nothing too serious. We travelled to Salford to meet my UK neurosurgeon to discuss the recent scan of my cyst, some good news at last, a little win. The cyst has not changed in size in 12 months, he informed me he could not fully rule out a csf leak within the cyst and the only sure fire way to do so would be a CT mylegram which in itself can cause a leak especially with EDS patients as you are piercing the dura so we agreed a watch and wait for another year for now.

There were many more appointments throughout the course of the last 2 months and with many more to come over the coming weeks and months, I am trying to look at each appointment as one step closer to a better quality of life although I am not quite there in my mindset yet with the recent knocks.

Where am I right now? On Monday we received the fourth and final opinion from the neurosurgeons. The opinions had come in dribs and drabs over the course of two months with dialogue between myself and them. Its been very difficult managing the communication, the uncertainty coupled with the above appointments and set backs but i live to tell the tale, granted a little wind swept and battered. The general consensus from all surgeons is that I do not need at present a full cervical fusion however i am in desperate need of being fused skull-C2 due to the compression of my brainstem and rotational instability which most definitely reflects in the pain levels of late. I am dislocating very mildly at C3-4 and a bit more at C4-5 however it is not impinging my spinal cord and does not meet a surgical threshold based on my imaging a year ago. Will this be my last neck surgery? Probably not, no. However that is a bridge to cross hopefully a long time into the future. My family and I thought long and hard about all the opinions presented to us and how they all correlated, we liked the consistency. Together we made the decision for me to undergo the surgery in Washington with a surgeon who has performed this operation countless times on EDS patients. This is a major surgery and does not come without major risk and we feel this is the right direction for me and my condition. The thought of getting to Washington fills me with dread but it can be done and will be done. The change of course has resulted in us having to open the fundraising again as the costs are significantly higher in America however I remain positive as this has been achieved by many patients in the UK and Ireland. I am very fortunate to have the most amazing support network of people who quite literally keep me going through there encouragement each day.

Over the next few months I hope to write about my feelings as we embark on this life changing journey and head towards the surgery in September.  Although i feel of late i am hanging on by a thread i am determined more than ever to face this head on and get a better quality of life for myself.  The surgery will not only save my life, it is life changing and will enable me to take some control back of the rest of my body.

“Do not be afraid to travel a new path, it maybe a way to find what you’ve been looking for all along”

The Invisibility War

“You look really well” those four words again, the cynicism builds within me.
‘Do they think I’m making this up or something? I may look okay but I certainly don’t feel it or maybe they are just being nice”.

 
In society, there is a mainstream idea of what illness should look like, how long it should last for and expectations of recovery, when you will suddenly become ‘well’ again. Unfortunately, for those living with chronic illnesses we will never meet those expectations, we may fluctuate within them, learn new ways of managing our conditions, go into ‘remission’, our symptoms may wax and wane but we will not get ‘well’.

 
Many chronic illnesses whether it be EDS, depression, anxiety, lupus or Crohns disease, to name but a few can be invisible either on the most part, on days, weeks or even months. This invisibility can make it extremely difficult for even those close to us to be able to relate, acknowledge, understand and empathise with our individual daily battles with illness. It can be hard for people to relate when something isn’t always apparent or visual. However just because you are unable to see it does not mean it is not there, it’s very real.

 
It is estimated that 69% of those with invisible illnesses were told their symptoms were down to anxiety or not even believed, before eventual diagnosis. Many people with invisible illnesses have spent years being disbelieved, poor treatment and care so you can see how the words of others can have such a significant impact on their wellbeing.

 
Over the years, I became somewhat a master of hiding behind my pain. I did not have a name for all the symptoms I was enduring, I could tell at times certain people doubted the validity of my symptoms and suffering. It was somewhat easier to hide behind a smile than attempt to explain just how unwell I was feeling when overall physically, I looked fine. I even took this stance often with certain doctors or consultants as I felt their willingness to help was not there, they could not find the cause of my problems therefore to them they did not exist or exist in the capacity I presented to them.

 
Since my diagnosis’s my attitude has changed to a certain extent, I am much more open about how I feel both physically and emotionally, I no longer actively hide my symptoms behind a smile, I choose too at times. Validation of a diagnosis can help enormously in the ‘believing’ stakes but not necessarily in the ‘understanding’ stakes. Living with a chronic illness is unpredictable, literally not knowing what is coming hour by hour, even minute by minute. It is a hard task constantly adjusting to this unpredictability. What we can do one day we may not be able to do the next day or even again that same day which those without illness can, not always, but can find hard to comprehend. If we have one activity that day (usually hospital) everything pivots around that. We could be seen out ‘looking well’ but it’s not seen that to enable us to make that outing we had to stay in bed until it was time to leave, we couldn’t possibly wash our hair too and afterwards when we get to our homes we crumble with pain and symptoms, all behind closed doors. When you’re seen out, it’s just a snippet, a snap shot, a moment, not your actual reality.

 

In life, we only see what we want to see and only let people see what you want them to see. We often live our lives through many different faces and smiles that may not necessarily reflect how we are feeling. That good old British stiff upper lip!!!

I am ‘a smiler’ it’s my way of coping, almost like my default mode. I don’t want the conditions to define me, I want to hold onto as much of ‘Ali’ as I can. I will often feel terrible but put my make-up on and some nice clothes just to sit in my house for a feeling of normality and to break up the horrendous ‘my heads falling off hobo look’ of late!! I may take a ‘selfie’, I may post on social media, you may see me smiling however don’t be fooled by the smile, it does not mean I am healthy and miraculously cured. It means I am happy in that moment or I am trying my best.

 
It’s strange that we all, myself included on the most part relate more to the visuals in life. Some days my condition can be very visual, will I let you see that? On the most part, no. I’m not ashamed of my illnesses but I still feel uncomfortable allowing people to see me look so sick, on these days, moments, weeks, I will stay in. I could be in numerous braces to steady my joints after dislocating, my neck brace on, using my walking stick or wheel chair, underneath the make-up looking like I’ve done 12 rounds with Mike Tyson with black eyes from brainstem compression, black and blue with bruises, resembling a real-life mummy wrapped in KT tape and on those days, I find I don’t actively talk about my symptoms as much because they are VISIBLE, often speaking for themselves. Does this mean the days I am not in a wrist brace, means I am pain free? If only, the pains in my wrist are constant it just means on the day I’ve worn the brace the bones have disconnected and its dislocated so I need to rest to it.

 
I would say for anyone living with chronic illness, whether invisible or not to go easy on yourselves. Do not feel you need to justify your pain or your symptoms. What you are experiencing is real. People will never fully understand, even people with the same conditions as you, as we all experience pain differently, we all have different symptoms and coping mechanisms. Our lives are already filled with challenges, we may also be in pain from a life un-lived or lived how we had not imagined so be kind to yourselves always.

 

It may at times be invisible but that does not mean it’s not there. See into the invisibility and help make our invisible, visible.

 

IMG_9973

Where have I gone?

Cushions strategically placed; under my knees, two behind my back, one around my neck, one either side of my shoulders and one under each arm, finally after looking like something from a Bensons for beds advert I’m ready to start blogging from my bed. Five minutes in I must stop, my shoulder feels like its hanging by a thread, wrist throbbing, head pounding and eyes stinging. Frustrated I reluctantly place my laptop to one side, resigning myself to the fact my body will not play ball. I quietly tell myself those 4 words that have become somewhat regular in my vocabulary “I’ll try again later”.

 
Imagine starting each day with a certain number of spoons, sound strange? The spoons are a metaphor, they are a measurement used to track how much energy you have throughout the day. Each activity requires a certain number of spoons which can only be replaced when you recharge until the next spoon becomes available, this could be minutes, hours, even days. Bear in mind you don’t have an unlimited supply of spoons like a healthy person, you’re very much rationed on the said spoons. You don’t have an unlimited amount of possibilities or energy, you are unable to do activities without effects and consequences. You have constant choices to make and consciously have to think about things the majority don’t. Spoons are used for the most mundane of activities such as taking a shower, drying your hair, getting down the stairs and even being upright. You can see how rapidly your spoons are consumed within the first hour of the day. Frustration builds as you have run out of spoons, you’re stuck in bed, waiting for the next spoon to arrive so you can load the dishwasher. Suddenly every aspect of your life is a challenge. Everything that was once simple, not even entering on your radar becomes a task, difficult, hard work……. a spoon taken. Every tiny aspect of your life must be thought out and planned, for every action no matter how small there is a consequence. Living your life with a limited and unpredictable amount of spoons each day isn’t easy. There is always a block you have to navigate whether it be adapting an activity as simple as taking a shower, allowing someone to help you or simply having to wait until the block decreases in size and you can just about clamber over it. You can imagine with the number of spoons used up on what were once, easy everyday tasks that there isn’t too many left for doing the things you love, the things that make you, you.

 
Over the years my ability to live a ‘normal’ life was fading yet I didn’t know why. The same flakey response “I’ll have to see how I am” when asked to do something. I found myself constantly having to justify my symptoms and just why I had to see how I was. I didn’t have a name for my symptoms but I knew the ability to commit to anything had gone. I had no control over my body from one day to another. I felt sitting on the fence with the above flakey answer was far better than 100% committing only to let people down or outright say no as on the contrary, I didn’t want to miss out. If I managed to make said plan, military planning would ensue “I can’t come for the meal but I’ll meet you after, I can’t drink either but I’ll have a brew”, “I won’t come for the meal but I’ll meet you at the cinema”, everything had to be altered in some way to enable me to make it. Boy did I then suffer for days after, I knew it wasn’t normal to be so sick, exhausted, pain so high from sitting in the cinema or going to bed at 12pm , nothing majorly taxing for someone in their late 20’s\early 30’s. Weddings and Christenings would be hard as they were long days, I often sat at the table as people were tucking into the wedding breakfast whilst I handed my food over to Nick (he loved it) filled with paranoia that people were watching me and wondering why I wasn’t eating. Fearful people thought I was being rude and shunning the gorgeous food before me, feeling awkward as to where to put my face whilst everyone was tucking into their food like normal people. I would then slip off to the car or hotel room if we were staying over and tuck into a light gluten free snack and having to wait a while for the pain to die down. Everything was hard work, I was so scared people thought I was being fussy and awkward that when an invitation came in a sort of dread and anxiety came over me. I found it difficult because before I got ‘really’ unwell 7 plus years ago I would eat anything, attend the opening of an envelope as I didn’t want to miss out, loved a glass of red, would do anything for anyone and would well and truly go with the flow. I had experienced that life, that fun, those happy times and now they were becoming few and far between. I missed so many outings, weekends away, holidays, gigs, meals out, everything social that brought people together was passing me by, my only connection through looking at the pictures on social media. I would often cry, get angry and bitter that I had missed yet another event. I began to feel like a spectator of life, it was lonely.

 
In recent years as my capabilities have diminished further It feels like I am watching myself go further into the distance, out of reach. Each day my world gets smaller, I don’t recognise myself. Im a million miles away from who I once was. I feel lost.

 
What makes us who we are? Apart from the obvious genetics and without getting too deep into psychology. What are some of the building blocks and fundamentals that help form our individual personalities? Hobbies- the things we like to do in our spare time often to relax, break a tough week at work up and the things we take enjoyment from. This might be going for a few pints with friends, painting, photography, running, swimming, going to Old Trafford (of course) to watch the footy, spa weekends…. the list is endless. Our network of friends- chatting with them, socialising with them or discussing the latest episode of line of duty, our ability to function and communicate. Our jobs/careers- how they make us feel, a sense of purpose they may give us not to mention the wage to ensure you are independent and can take care of your needs. Our families, children, our individual looks, hair colour, fashion- whether you’re a jeans and t-shirt girl or a glam chick, it’s part of you. We all hold these various blocks in different regard, some are more important to us than others but essentially, they are a variety of blocks that make us who we are. Imagine those fundamental blocks being taken away from you one by one like a game of Jenga. Eventually and inevitably the tower you’ve spent your whole life working hard to build falls, the structures lost, this is no different to what it’s like for people living with a plethora of chronic illnesses, people like me.

 
I held my job in high regard, I worked hard and I was good at what I did. I felt very lucky that early on in life I knew what I wanted to do and that was to help vulnerable children and families. I had 14 glorious and at times trying years doing this in various capacities. It gave me great pride and a sense of achievement every single day, this was what I was meant to do. Being too unwell and losing my job was devastating. A devastation I kept very much to myself, there was so much going on with my health there wasn’t room or time for even more emotions then. At this point my world felt like it had crashed at speed, I’d lost everything I had worked for. I had grappled onto my job and worked through the most awful symptoms and tests the best I could for such a long time but I could no longer manage. For those that know me well, I do not give in or give up easily so when my hands are held up it really does mean the white flag is out, I surrendour. I cried for days, I felt I now had no purpose and no position in society. I loved my job and it was another thing robbed, at times I felt angry and bitter. The ‘why me’ and ‘it’s not fair’ came out a lot. I worried what people would think, I had never been without a job in my life, sometimes having three on the go, would people think I was lazy? A scrounger? Always being financially independent, being able to purchase what I wanted, within reason obviously (council wages aren’t huge) I suddenly found myself without money coming in, no monthly wage hitting my account. Although only money, when you’re used to having your own and taking care of yourself the truth is I felt degraded, I was indepenant and now suddenly my partner was having to take on full responsibility of our home, mortgage, bills and other outgoings, it felt rotten and there was absolutely nothing I could do about it.

 
Before the illness really took hold 7 plus years ago, I enjoyed going out for meals, drinking, partying, random weekends away on the spur of the moment, running and horse-riding. When I was at college my dad used to say ‘You’re burning the candle at both ends’ I’d race home from a 12-hour shift on a Saturday at Tesco to be greeted by a big pizza and a bath run curtesy of my fabulous Mum. It was like challenge Anika, I Would have a 45-minute turnaround to get said pizza consumed, bath, hair done and makeup on before I met the girls at the Hare and Hounds or ‘the dogs’ as it was nicknamed, It wasn’t a normal week without going there at least three times!! As the years passed and these activities became harder to undertake I sort of ‘trouble shooted’ what I could do from home to keep myself occupied. I began crafting and I loved It, it was relaxing, it took me into a little world away from my symptoms. I made items for people and people were very complementary. As time went on I found I had to change the craft projects, they evolved along with my symptoms. My head and neck became so painful that knitting and button pictures were out, next to be struck off was my sewing machine, painting and drawing. The final craft I tried was candle making until my shoulder continued to buckle and tremors too great to carry and pour hot wax. I valued my nice kitchen and my skin!!! All the crafts I did through pain from the start, but there are levels of pain and when the pain was too great I knew it was time to hang up my needle and thread. I had tried to create a positive from being unable to go out and now I was unable to even do this. “I may as well just sit in bed and not move, I can’t do anything”. Angry, upset and defeated. Everything had been taken away, everything.

 
Socialising with friends out of the house was out, my days taken up with hospital appointments and pain that demanded to be heard my only option was to have friends round. Even now I have to cancel as the symptoms are all too great, flakey Ali again. Letting my friends see me behind closed doors was hard at first, I felt embarrassed, they never made me feel this way, this was my problem. I could no longer go the hairdressers, Nick became the new Nicky Clarke, often too poorly to wash my hair and put my nice clothes on I resembled Worzel Gummidge!! I’d lie flat and talk with friends, catching up on their life and them on mine. My voice echoes in my head when I talk so it’s not easy having a conversation and because at present my hearing is disturbed from the compression I can either shout or whisper unbeknown to me!!!

 
Just from the limited examples above I hope they can give you an insight into just how it feels when those building blocks are taken, the fundamentals of you gone. You feel a great sense of loss. I look over old photographs with mixed emotions, I cry at the thought of not being able to do that, dress like that ,look like that and at the same time look on them with happiness that I did actually get those chances, as many don’t. It’s a sort of grief, have I come to terms with this? Absolutely not. I would be lying if I said otherwise. I always wanted this blog to be a true reflection of my journey and that includes the good, the bad and the ugly. I still feel angry, frustrated, sad, an actual empty pain in my heart and even jealous at times, I don’t think I’d be normal if I didn’t think and feel those things but at the same time I have hope. I have to believe I will get a better quality of life back, I have to hold on tight to that hope everyday as without it I may as well give up now. Do I feel like giving up? Of course, “I can’t carry on like this”, “I can’t do this anymore its cruel” however I have not been brought up to give up. No matter how hard this journey, I will continue to pick myself back up and get back on the path. I always refer to one of my favourite quotes “I don’t know how my story will end, but nowhere ever in my text will it say ‘I gave up’” I have too much I want to do with my life, too many hopes and dreams.

 
Although my body is unable to keep up with my minds desires, I still have hopes and dreams like anyone else. I’d say they have changed over the course of two years and become what you’d class as a bit ‘none grande’ instead of my lifelong dream of going to the Seychelles and staying in one of those beach huts on stilts, I now dream of the day I can get out far enough to Saint Anne’s Beach and feel the sand under my feet, granted I may step on a shard of glass from a bottle of Becks!! but that is the hope right now. My current dreams are more realistic in order not to set myself up to fail, for further disappointment. I have a little bucket list going and each week something else is added. I take myself off there in my mind and imagine what it will be like and hopefully one day that image will become reality.

 
When faced with so many challenges your priorities change, as cliché as this sounds you realise just what’s important in life. It’s not possessions, houses or holidays it’s the people who truly stick by your side in your time of need. I am very fortunate to have the best family, my parents, brother, sister in law, my partner Nick, his parents and sisters would do anything for me. They understand the conditions, my limitations and constantly support me, as do a very close network of friends. When you take away the shell its who’s inside and who stays that really matters.

 
This isn’t how I planned my life to go, this definitely wasn’t a destination I placed a pin on my map to visit but it’s where I am. None of us in life know what’s around the corner, life isn’t fair at times and life can be cruel. I’d say it’s how you take on what’s placed upon you, how you tackle it, fight through it and more than anything have hope and believe a better day will come.