Health Update- Part 3 (The Finale)

Congratulations…..get your cap and gowns as you’ve all graduated from the “Ali’s crash course of health issues”. This will be my last health update post and the aim from now on will be to update weekly/fortnightly on what is happening, how I’m feeling and run alongside that some hot topics I am itching to write about. Grab yourself a celebratory tipple for the final instalment. 

Gastro-

My gastro system was one of the first issues I had going back 10 plus years and we went round a merry go round of IBS, Crohns disease and many more illnesses over the course of that time having more investigations than I care to think about. You can read more about this in one of my earlier blogs “A gut feeling”.  Once I was referred to a neuro-gastroenterologist I started to have the right investigations and gradually the pieces of the puzzle started to fit together. Many people with EDS have gastric dysmotility this can be in the form of too fast or too slow transit or it can swing between the two. Both conditions share some similar symptoms but there are marked differences between them. One thing they both have in common is how debilitating they can be for the patient. 

A few years back I had exploratory surgery for a mystery “lump” during the surgery adhesions were found which are bands of tissue that were wrapped around my lower bowel. I remember the relief thinking we had finally found the cause, this tissue was cut and removed however I was told the possibility of this tissue growing back was high and in fact the more times you go in and cut the more scar tissue forms and the worse the problem becomes, great stuff!! Shortly ensued a colonoscopy and barium studies.

 My most recent “bowel” related test was something called a tracer study under nuclear medicine. I had to take a set of pills over the course of a few days, each pill dissolved releasing various shapes into my digestive tract which are highlighted on an x-ray. On day 7 I was scanned with the aim of the game being 80% of the markers to have packed up and gone down south, I’m clearly a Northern lass through and through as you will see!! The follow up with my gastro came who said the good news was the markers weren’t stopping at a particular junction which meant there was no need to remove a particular section of my bowel that had nerve death. I thought I was home and dry I turned to my mum relieved about this however I soon noticed the expression on his face and he explained that the entire bowel seemed to not be as it should even parts of my small intestine and it was a worry that this related to the nerves and muscles ability to propel contents along. He said if this was a case of ‘simple constipation’ the transit time is usually normal and most markers would have left with only a few residual in the sigmoid colon.  Below are x-rays of my small and large intestine, the images were clearer on my consultants computer whereby he could fade some of the white out for clarity particularly at the bottom of picture 1.  Off memory 59 remained from 72.

As you can see there is quite the shape game going on here and unfortunately they are dotted throughout which signifies an issue with the nerves and muscles throughout the large bowel and a portion of the small bowel. This is called colonic Inertia. The pain this causes at times is unmanageable, all of our systems propel food in what should be a nice rhythmic manner however mine is out of sync, completely un-coordinated and poor functioning which leads to such extreme cramping at times I have passed out not long after eating. The pain can fluctuate throughout the day but never leaves.  My diet is extremely limited and standard laxatives just sit in my bowel causing further cramping instead of doing the job they are aimed to do.  To try and relieve the pain of the cramping I am unable to take opiates as they feed into the problem further as they slow the bowel down and they don’t stay down long due to inflammation of my stomach lining. I was assigned a bowel function nurse and currently experimenting as and when with a medication called linaclotide, enemas, self bowel massage (funnily enough I can’t find a beauty establishment that lists this in there treatments) and some home remedies. There have been a fair few trips to hospital over the years with suspected bowel blockages.

A radioactive egg and jam sandwich came next, yes you hear me correct!! It was certainly not gourmet. This test was to study the motility of my upper stomach.  I explained to my consultant some days I feel my food is sat in my stomach for hours and I can only manage a few bites through nausea and feeling full and other days it feels its tipping out of my stomach too quickly and I get shaky, nauseas, low blood sugar and some other symptoms I will kindly leave out. Once I managed to get the sandwich down which is no mean feat I can assure you I was scanned at regular intervals. The radioactive substance within the sandwich is highlighted so they can trace its location in your system. On this day the result showed rapid gastric emptying, essentially my food is tipping out of my upper stomach quicker than it should leading to nausea, sweating, cramping, low blood sugar and not really feeling you have eaten shortly after a meal. I know there are times when my stomach is extremely slow and this would be slow gastric emptying of which I feel sick and I can’t actually get any food down at all of which I have nutritional drinks as a back up. It basically swings between the two but on this day it showed rapid.  As you can imagine its quite hard to treat a stomach thats tipping too quickly and a bowel and small intestine that are on a permanent vacation as the two contradict each other.

Since surgery I have had problems with my swallow, my food is sticking and I can either get it down with fluids or its back up we go. I had a barium swallow which showed some pooling of barium but we have not yet bottomed why this is happening daily. Thankfully I am not aspirating my food which is the real danger however none the less its extremely unpleasant and can be frightening. Due to NHS cutbacks my consultant has had one of his two clinics taken off him so he now has to cram two clinics in one so I don’t get to see him until October (insert frustrated face).

Iron Deficiencies-

I have difficulties with malabsorption of nutrients combined with a very limited diet I often don’t get enough of what I require. I had visited my GP some time ago reporting I felt much more tired than usual, breathless and pale. She ran some bloods which came back as my ferritin (iron stores) were extremely low. I have been here before and recognised the feelings. I have tried many iron supplements over the years and they do not raise my levels, they cause a lot of side effects and are now a contraindication due to my bowel difficulties. My ferritin has dropped further since the initial blood test and an iron infusion (cosmofer) has been arranged for late next week which will take around 6 hours if all goes well, ill get some movies downloaded for that one!!  Ive had one before many years ago and I do tend to feel quite unwell during and a few days after them but when this lifts I feel I have much more energy. Essentially I’m running on fumes at the moment so hopefully topping the tank up will make a positive difference.

Years ago I was placed on B12 injections after reporting the same symptoms as above in addition pins and needles and numbness. My B12 was tested and was rock bottom, I got quite unwell at the time as it was not reported properly by the hospital initially so it went untreated. I was commenced on B12 injections and have them 3 monthly.  As part of a new initiative my GPs practice are training patients or partner/family to do the injections. My partner and I went down for the training with the lovely nurse.  I didn’t think I would have a problem doing this injection myself and drew the fluid up, changed the needles and when it came to putting it in at a 90 degree angle (all the way in I might add) I just couldn’t push it in. I was surprised as I am not in the slightest fearful of needles.  My lovely partner stepped in and was shown how to give it in my arm. The injection is uncomfortable as it has to penetrate the muscle and not hit the tissue so it is a very deep injection and the substance itself stings but it is more than manageable and usually only lasts for a few minutes. My partner did a sterling Job and said he could not have done it to himself either but I have to be nice all the time now as he has the needles 🙂 The lovely nurse said we are welcome to come back anytime for a refresher which we probably will do, I will give it another go myself as I don’t like to be defeated!! Below is the sharps bin, B12 and needles, to be fair you can see why I struggled pushing that needle all the way in myself. My arms are so thin I’m surprised it didn’t come out the other side!!

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ENT-

I see my ENT consultant in a month to discuss setting  a date for my deviated septum surgery. I was on the fence whether to have this surgery or not, to be honest it would be nice to get my right nostril out of retirement and to alleviate the chronic sinusitis it causes as its no fun really. Ive recently been having problems with my ears which will be added to the list to discuss during the appointment.

Eyes-

I have Posterior vitreous detachment of both eyes meaning the membrane has separated from the retina. Its quite a common condition but usually in those over 65 not 33.  On my left eye the membrane has fully come away and on the right its hanging on for dear life and half pulled away causing floaters, flashes of light and sometimes it feels like I am looking through a cobweb, its extremely annoying however not painful.  I have to be careful for any sudden changes and have to be checked out by the eye hospital due to the possibility of retinal detachment which is a serious condition.

My vision is at times blurred, double but more so a loss of focus and clarity.  I am under vision therapy at present trying to get the brain and eye to communicate better however we are not sure if this is related to my head/brain and CSF problems which can cause similar symptoms so it feels a bit of a guessing game at the moment as to what is actually going on.  It is like this with many aspects of my health right now and many conditions mimic each other symptom wise so to pin down the origin is proving a challenge, a frustrating and tedious change at that.

I have dry eyes which are extremely annoying!!  They itch, burn, sting and feel like the gritters have been doing a day shift pretty much 24/7. I use eye drops recommended from my eye doctor about x8 a day and use warm heated pads on my eyes to add moisture to them.

There are MANY other things going on with my health, only yesterday I was told I had yet another issue which I will talk about in my next post. I just wanted to get the bulk of my current situations up to date for fluidity and now I am good to go.  As you can see there is an awful lot going with my body but just how does it feel physically, mentally and emotionally, just what goes on at the appointments, how much advocating has to take place, what mistakes are made, is there joined up care, how much support is available for those living with a chronic illness, what judgments are made about those living with invisible illness….these are just some of the topics I will be writing about over the coming weeks. 

*I receive many e-mails from my blog from patients and families which is lovely, if there are any particular topics you would like me to write about or hear more about please get in touch either via the comments section or you can e-mail me through the contact link via the menu*

 

Health Update- Part 2 (Orthopaedic, Urology & dermatology)

Im back again…. with another health update.  I am conscious these health updates are quite clinical and factual and you may feel like you’re reading a medical encyclopaedia or studying for your finals.  The truth is when writing about my various health conditions I find it much easier to write in this tone and almost detach myself from the situation and be quite factual in my writing.  These conditions are having an enormous impact on my life and those closest to me with much emotional upset and turmoil however I feel I want to write separately about that soon.  I am not being very descriptive about how some of these symptoms actually physically feel like day in, day out and again I intend to do posts talking about this aspect.  I have so many ideas simmering away for future blogs from emotional well-being, the massive impact this is having on us, the health care system and much more which I plan to run alongside weekly blog posts.  As mentioned yesterday I aim for the updates to be completed by weekend so I can get stuck in.

With Ehlers danlos syndrome being a connective tissue disorder it means our collagen, the most abundant protein within the body is weak, fragile, stretchy and overall not made very well.  Collagen is found throughout the body providing support to skin, tendons, ligaments, blood vessels, bones and internal organs.  Essentially the glue that holds our bodies together is of poor quality.  As you can see by the role connective tissue plays within the body this can give rise to a whole host of multi-systemic symptoms throughout the body.  One area largely effected are the joints.

A large portion of my joints have fully dislocated over the years whereby there is a full separation of the bone from the joint (ouch) these include my right shoulder, fingers on both hands, right wrist, both knees and ankles.  I also get what are called subluxations which is a sort of full dislocation “tease” otherwise known as a partial dislocation or significant structural displacement of the bone. I get subluxations of the above mentioned joints as well as my neck, left shoulder, hips and jaw.  Personally I am more plagued by chronic subluxations of said joints numerous times a day.  With the subluxations being daily the pain which accompanies them and that they leave behind is chronic in nature. That isn’t to say I don’t get full dislocations as I do however some joints are affected more than others. My worst areas for full dislocations are my knees, right wrist and fingers on my right hand. My right knee (the devil) is a daily occurrence and on average wrist and fingers weekly depending on what I am doing.  My knees have dislocated whilst turning over in bed which believe me is more efficient in waking you up than any alarm clock going !!  At present my main struggles relating to my knees are firstly navigating the stairs in my house, going down them isn’t as bad as going up. Im either having to bottom shuffle up, which to be fair the old girl could do with a work out or if able take the stairs one at a time. Secondly getting in and out of the bath, I’m still working on my partner getting a walk in Jacuzzi bath however don’t seem to be making much progress!!

When a joint fully dislocates it is painful not to mention looks damn right weird.  I have had so many dislocations, like many people with EDS we learn to relocate the joint ourselves or we would never be out of A&E (ER), due to the nature of our stretchy collagen some joints believe it or not can be quite easy to relocate/pop back in.  There have been times that I have been unable to relocate the joint namely if my left knee dislocates inwards instead of outwards which thankfully isn’t a regular occurrence or when I have thought I had relocated a joint only for it to repeatedly dislocate and find out via x ray it wasn’t quite in.  When a joint dislocates it isn’t just left at that it can cause damage to the surrounding ligaments, tendons, muscles and nerves thus feeding in to the cycle of further dislocations and chronic pain.

I find the chronic pain of frequent subluxations almost worse than a full dislocation. When a joint fully dislocates the pain is acute, I maybe known to shout out the odd naughty word, however mentally you know that level of pain will inevitably fade until the next full dislocation whereas the chronic joint pain I find much more exhausting and problematic. I have a lot of aids and braces to hand which I use as and when needed.  I alternate heat and ice daily and myself and bio freeze are very good friends.  I will only use a brace if a full and particularly nasty dislocation has occurred or a joint is going through a phase of persistently dislocating.  The braces rest and immobilise the joint which in turn gives a good level of pain relief and time for healing. I am however very mindful if the braces are on for too long the muscles can atrophy quite quickly which ultimately feeds into the problem further.  As we rely on our muscles to hold and support our joints as many of us have ligament tears, damage, long stretchy ligaments that are unable to to do the job they were created for it is vital to keep the muscles as strong as possible (easier said than done).

I recently saw my wonderful physio, I absolutely adore this lady.  She has just the right amount of care, compassion, understanding and empathy whilst telling you just what needs to be done. I told her about my ever increasing problems with my shoulder, limited range of motion and that around my shoulder blade keeps swelling when trying to do certain basic tasks using the right arm/shoulder and that the pain has me either in tears or screaming when its nerve type pain. When you have so many pains you learn to differentiate between muscle and nerve pain quite well.  She suspects a rhomboid strain or even tear as well as the rotator cuff and labral tear I have. My shoulder blades are also misaligned. We arranged for me to go back to my shoulder surgeon for review which is coming up very soon. She brought another physio in who looked at my shoulders and both were concerned about marked muscle wastage around the shoulders, shoulder blades, arms and upper back which a few consultants have noted recently also. I explained when I try and do even the most basic of the exercises the shoulder blade pain flares so severely I am left having to lay with ice on it to bring the swelling down as the blade disappears through the swelling. After a discussion it was felt I would benefit from hydrotherapy as the water will not only support my joints but the heat will also ease my pain whilst we start to mobilise the joints and build up the muscle in surrounding areas.  The muscles are not only wasted, whats left are imbalanced and weak so there is very little to support me right now.  Sadly this isn’t just exclusive to my right shoulder this is going on throughout my body and my goodness the pain!!

We have to be cautious getting in the pool with my POTS but as long as I’m well hydrated I’m hoping I will be fine.  They have had a few POTS fainters in the pool before but we can only try I say and I’m all for it. Best get myself a decent cozzy!! Ill be starting this as soon as I have had my upcoming iron infusion. The physios taped my shoulder and gave me two very basic exercises to do which although uncomfortable are bearable and don’t seem to be swelling the area up. We had another little discussion about pacing and listening to my pain instead of fighting against it (Don’t seem to be catching on with this very well) often letting stubbornness and sheer frustration take over the show.

I hobbled off to see an orthopaedic surgeon about my knees who examined both knees.  Based on my MRI scans a number of years ago I know the ligaments are not in great shape and the grooves of my knees are shallow allowing the knees to slip out quite freely.  In fact on the MRI it was noted both knees were subluxed in neutral lay down!! The consultant sent me for an X-ray and an up to date MRI of both knees and I see him in clinic in August for the results.  He discussed creating synthetic ligaments as its no good using my own tissue and pinning the knee caps in place however I firmly want, when I am more able to get some physio underway before taking surgical routes.  I will however see what he says in August.  I was also sent to podiatry to have some insoles ordered which will try and align my knees better.

Next came the multi-skeletal clinic and the topic of conversation was my wrists.  For many years my hands have been going numb, tingle with pins and needles and change colour particularly if the wrists and elbows are bent.  My GP had already sent me for an ultrasound of both wrists to rule out anything structural so this was step 2. The specialist took a detailed history and began to examine my wrists and elbows.  She put my wrists and elbows in various positions and pressed certain areas which brought on the symptoms of pins and needles and numbness quite quickly.  She explained she was putting pressure on the nerves which is what happens in people with carpel tunnel syndrome and ulnar nerve entrapment when the wrists and elbows are bent. The longer the nerve was pressed my hand changed colour, I explained to her I could never hold a cup of tea for more that 2 minutes before my hand would go numb, change colour and id drop the mug – my poor carpet and what a waste of brew.  She briefly explained the surgery which involves releasing the pressure off the nerve and said as it is happening in both my wrists it would make sense to have my dominant wrist done first.  She has referred me on for nerve conduction studies and said once in receipt of the report a referral will then be made to consult with an orthopaedic surgeon.

Urology-

For as long as I can remember I have had problems with my bladder, for a long time it was put down to “irritable bladder” that absolutely annoying phrase used by some doctors, usually when they aren’t quite sure whats going on and don’t wish to pursue with testing.  I persevered with it for many years until a few years ago it became much more troublesome. When you have so many health problems you sort of create a priority list in your head of level of importance.  Almost like a mini risk assessment of how much is this impacting my life through pain, discomfort etc and this id say was around the middle of my list.  Before my fusion surgery I saw a fabulously thorough NHS lead urology consultant who did not feel this was “irritable bladder” by how I was describing the symptoms. I won’t be shy…. I have a constant pressure feeling I explained to him in “that region” and a consent feeling I need to pee, I will pee and have to almost push it out and I never feel like I am finished which results in a large portion of my day sat trying to piddle, I think a reason why there should be some kind of entertainment system in my bathroom to join the walk in jacuzzi bath (I can but dream).  He knew all about EDS and how the bladder can be lax, nerves not necessarily functioning correctly and much more. By the symptoms I was describing he suspected a stricture. He ordered urodynamics testing which I must admit I did not find pleasant at all involving a catheter inserted up both ends shall we say whilst you pee, stop, pee etc during this pressures are taken and how much fluid you retain is detailed. The results came back as normal filling capacity with high pressure, slow flow and some retention. Below is some of the tracking results, not that I have a clue what it means.

I was advised I would need a rigid cystoscopy under general anaesthetic and urethral dilation and was advised to start self-catherterising at least x1 a day and self dilate my own urethra (fun, fun,fun). Given we were shortly heading for surgery I did not do any of the above as the main focus was getting to Washington. Since our return I have been back to urology and the pain remains, I am currently awaiting an appointment with the urology nurses to learn the process and I’m awaiting an appointment with an anaesthetist to try and get a date booked in for the rigid cystoscopy to open the urethra and have a peek inside my bladder. The consultant did say this is something I may need to have numerous times over the course of time as the urethra can narrow again and again.  Sadly the urology services are so busy I am still awaiting my appointments.

Dermatology-

I have a few skin “things” going on and after showing my GP she sent me onto  dermatology for review. After explaining the symptoms and showing the dermatologist I was diagnosed with a few different conditions. Firstly Erthema ab igne, this is quite a common condition seen a lot in the elderly. Essentially my skin when exposed to heat sources such as heat pads, hot water bottles, if I sit next to the fire, rest a brew on my lap will burn, mark, scar and go extremely red initially followed by brown pigmentation  which can either last months or scar. There is no cure for this or magic potion other than removing the use of heat sources however like the consultant said is not easy to do when you have a chronic pain condition. There are laser options to try to make it look aesthetically better.  I am trying to experiment with different heat sources to find one that does not cause such significant marking. I am also finding aloe vera gel quite useful and bio oil. Secondly is a condition called Livedo reticularis which involves a disturbance of blood flow to the skin causing slow blood flow and reduced oxygen to the skin which results in what I have crassly nicknamed “the dead body” or “corn beef legs”.  Alongside this I also like many with POTS have blood pooling, if I stand for not much longer than a minute without moving my blood will drop to my feet and legs, they go very cold/sting/burn if I was to stay in this position I would eventually faint unless I moved around again to get the blood pumping back up to my head. Whilst in the hospital the other day a mild version occurred whilst stood in the queue, I moved one leg and foot purposely for comparison. I’ll put the picture below however with a WARNING as if you’re anything like me I HATE feet and I certainly don’t want to be putting anyone off there dinner!! This would be a mild version of blood pooling for me however I do not want to lose readers by showing the real deal.  Needless to say fake tan is my ultimate best friend for my legs however I often feel I am just replacing one problem with another as I am very challenged when it comes to the application of it, basically I’ve swapped red/purple blotchy legs for orange legs instead !!

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What a way to finish this blog with a picture of my purple foot, how lucky you all are!! Ill be back soon with my final 2 health updates.  I hope you’re all having the best possible day you can.

Ali xxx

 

Turners tours…….

Firstly I must apologise for not updating my blog sooner, since being back home we’ve been on tour…..of local hospitals *sighs*.

So……how am I feeling post fusion wise??? Well in terms of the surgery recovery I am doing very well, I think. I seem to have healed beautifully, the scar is very tidy and my undercut is starting to grow out to a more disheveled/shabby kind of look. I am in the process of weaning myself out of the brace and really just listening to my body during this process. The fact I can now carry the weight of my own head is simply amazing, I will never take that for granted. I’d say I manage about an hour before the real spasms kick in of which I either put the brace back on for a rest or lay flat and alternate heat and ice. Today I actually had my first physiotherapy appointment since surgery, it was nice to see my physiotherapist again, she is lovely. We are taking things very slowly and starting off with some light isometric exercises which strengthen the neck muscles, I will also be doing some extremely light core strength exercises. My body has become very deconditioned over the last few years and my muscle tone and control is poor but with EDS its always a case of starting right from the beginning and working our way up at a slow pace so for the next month it will be light isometric exercises and some stomach in/bottom squeezes lay flat. And on top of that some light daily massage (sadly the NHS don’t provide a masseuse) to loosen up the trigger points as my neck and shoulders are very tight since fusion partly due to the magnitude of the surgery and partly because of the limited movement I have now.

In ten days I will be having my post op three month x-ray to ensure nothing has worked loose and to see if the bone has started to grow. I’m quite nervous for this actually as the aim is for my own bone to grow over time for the surgery to be a success.

So many people have been asking what improvements I have noticed since surgery, this can be quite a tricky question to answer one being as it’s still relatively early days and also I have multiple chronic conditions that all feed into each other and give off an array of symptoms and fluctuate in nature daily. So far the very fact I can hold my head up independently again without a brace or holding it myself with my hands is AMAZING. I have noticed an improvement with my vertigo, tinnitus, neck pain and bladder issues which is very positive. I’d say the biggest blow so far is that the debilitating headaches I’ve had for 2.5 years daily still remain as well as talking aggravating the headaches further and for anyone that knows me personally knows how much I LOVE to talk!!! This has been one of the hardest elements for me, being muted 80% of the day just to try and keep my headaches at a medium/low level. I also struggle with sounds around me it’s like sensory overload (very bizarre). Myself and Nick are off to London in the New year to see a leading professor who specialises in headache disorders particularly in EDS so I am very much looking forward to meeting this expert. Headaches and EDS are very complex as there can be so many different causes from migraine, blood vessel problems all the way through to high/low brain pressure and anything in-between. I shall keep you all updated how that appointment goes. Before I banged my head 2.5 years ago and this cascade of symptoms came about I had never suffered from headaches in my life and they are so very hard to articulate as they are not like your average headache, or hangover headache (I wish) the pain moves all around my head and face, changing in intensity going from severe pulsating pain to knife like pain to pressure. Very odd. Very unpleasant. Very debilitating. This is the symptom that has stopped me in my tracks the past few years.

Now…..the rest of my body!! I have completed a diagram labelling a body of the various organs/joints affected for a clinician and thought I would share it on my blog. Labelling the body doesn’t really give insight into what it’s like living with each and every symptom but I thought it was useful none the less. *Get your magnifying glass out or use our zoom*

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Since being back my parents and I have toured the hospitals catching up with all my consultants. My parents…. literally the best humans on earth.

Turner’s Tour-

Tour 1

Myself and Nick went to see the pain team. We spoke with a nice lady and discussed my conditions and the impact they have on my life. As well as controlling my pain one of my big issues is coming to terms with my conditions and how my life isn’t what I expected. There are many aspects of this for me personally that I struggle with and I’ve decided I’m going to open up more in my next blog post about this topic I’ve quietly struggled with the last few years.

Tour 2-

I have seen my GP a few times to catch up with her post surgery and to discuss my worsening POTS symptoms as I’m not due to see my cardiologist until next year. It’s quite common for POTs to go crazy after major surgery and inactivity so I’m not surprised. My heart rate is spiking quite high but at present it’s coming back down on its own within a reasonable time frame of which I am thankful as there have been times when it’s landed me in A&E when it refuses to go below 150. My other issues are the inability to stand for longer than 10 minutes without intense blood pooling in my legs and low blood pressure. I am soon to start a medication to increase my blood pressure and widen the blood vessels, this tablet doesn’t come without side effects and possible complications so I will need to check in with my GP regularly for my blood pressure to be taken as it can cause hypertension and effect my heart rate. I also had some bloods taken and my 3 monthly b12 jab. I’m so fortunate to have a lovely practice with lovely doctors, nurses and staff.

Tour 3– Ear, nose and throat appointment. We discussed the surgery I require for a severely deviated septum which I’ve had for a long time however it has got progressively worse to the point my right nostril is now out of order. Given I will need to be intubated and require a bit of extension of my neck we agreed to catch up again in January to book a date for surgery hopefully middle of next year as I need a break but it maybe sooner.

Tour 4- The dietician came to my house, so I call this half a tour. She was extremely pleased with the weight I have gained but understands how it can fluctuate with my gastro symptoms. Although my diet only consists of around 10 foods she was happy I’m getting what I need to sustain myself and recommend i take some vitamins also. We have a plan of nutritional drinks that are easier to digest for when my weight dips. I have put back on the stone I lost after surgery which is fantastic news.

Tour 5– I saw my gastro as I am struggling immensely as always with my stomach/bowel. My gastro system has plagued me for around 10 years and I suffer so much because of it. Firstly we addressed how my food has been sticking since surgery and he was a little
Concerned if it was nerve related. He booked me in for a barium swallow. I have also had intractable heartburn/reflux/chest/back pain the last 6 weeks which isn’t responding to potent acid reducing drugs. My gastro wanted to do an endoscopy however I am unable to tolerate them without being put totally to sleep which he felt so soon after surgery wasn’t advisable but we are going to discuss this further as the symptoms are debilitating. Way back I had a study called a sitzmark study which involved swallowing various pills over a few days, each pill contained different shapes and then being x-rayed to see where the shapes were. The majority of the shapes are meant to have left the body however with me 90% remained, I’ll never forget when he turned the screen round to show mum and I and my little intestine and colon was just swimming with little triangles, circles and rectangles, I didn’t know if it was the shape game perfection from the 80’s I was looking at!!!! This shows a condition called colonic inertia, basically the nerves and muscles in my bowel don’t fire off like they should it’s a step up from good old constipation and the worst thing for it is high fibre foods as they cause unbearable cramping, broccoli is the devil!! We discussed how I seem to fluctuate between dumping syndrome (classic name) whereby I eat and within 30 minutes I am sweating, pass out and find myself on the thrown (too much information?) and within an hour or so have low blood sugar like I haven’t eaten in days or extremely slow stomach transit whereby my food sits in my stomach for hours and hours causing indigestion/ nausea and bloating, couple that with my snail like colon and it’s HELL. The nerves in my stomach just misfire and the muscles are uncoordinated so I often pass out with the level of cramping and pain. I am being sent for a gastric emptying study in the new year to chow on a radioactive egg and jam butty to see the speed food is leaving my stomach.

Tour 6- Barium swallow day. I went and swallowed some chalky paint which tasted of refreshers and stood on some kind of contraption whilst x-rays were taken to assess my swallow. Sadly due to fusion I couldn’t complete the final part to look for reflux and hernias as it involves getting my head into some rather funky positions I couldn’t do. The final part of the test with me being gluten free involved me eating a mince pie top I brought with me coated in barium (how to kill a good mince pie right there) !! I chewed it to death to get it down, more than I would normally as I wasn’t allowed water to send it on it’s way and didn’t want to choke.

Tour 7- caught up with my lovely physio who has put me on a very light post fusion programme.

We have speech and language, pain clinic x2 and x-rays before Turners tours finally finishes 28th December for the year before resuming in January which is booking up fast, magical mystery tour has nothing on us.

 
In other news-

During all of the appointments and symptoms I have tried to get back to making the odd item. It’s very important for me to achieve something with my day for my pride, my mind and my self worth. Although now everything has to be adapted and done in stages (gone are the days of spending 10 hours behind a sewing machine) everything, due to pain has to be undertaken in 20 minute stints. I’m still trying to learn this pacing business. However I am super proud of the few little things I’ve made and achieved, it really is the little things at the moment that keep you going.

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I thought I would finish off with a quote that I read daily at present through the trials of recovery and EDS.  I think its ideal for anyone who might be feeling overwhelmed right now, for whatever reason.

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My escape before surgery 

It was essential in the days leading upto surgery that I kept myself occupied. I could not do too much however we managed to get out for an hour here and there in the wheelchair which was heaven. 
A place we soon discovered was ‘ the waterfront’ which on first visiting instantly became my “go to” place. I found myself gravitating to the steps which led into the water where the ducks would gather. Just to be able to be outside, hear the relaxing sound of the water and ducks splashing was truly heavenly, it often brought a tear to my eye as I really took my surroundings in. It became my all time favourite place and I found myself very relaxed when there. I would sit and just watch the water whilst listening to music. It was so peaceful it gave me the time needed to think about the surgery, the journey ahead and reflect on the journey so far. 
My head felt cluttered regarding the surgery. Most people go into surgery and ultimately come out cured or significantly better. The main aim of this surgery was to save my life, stop my neck from dislocating, stop the artery and brainstem from being compressed. Ultimately saving my life and enabling me to move again without risk of falling over and causing paralysis. Stop the symptoms in there tracks before they became even more disabling and serious. Having the neck brace as a tool when needed instead of it being a necessity. Any symptom improvement was always going to be a bonus from the long term damage already done and the recovery was going to be mammoth over the course of 12 months plus. There were fears of getting through the surgery safely especially with it being in such a crucial part of the body to developing further instability in my spine over the course of my life to the day I’ll be weaned off the brace and have to learn to do quite basic things again with little head/neck movement. We all in life want a quick fix, myself included and sadly this wasn’t going to be that. I had so many day dreams of waking up ‘cured’ and symptom free, I dreamt of doing everything I had missed out on over the course of many years but I also had to bring myself back down to earth and remember I had EDS, dysautonomia and other health issues that sadly weren’t going away. On the other hand I also wanted the opportunity to live and be able to fight those illnesses as best I could. I wanted a chance at a life again. 
Two days before surgery I sat by the water reflecting on the past two years from the loss of my job, becoming virtually housebound and thinking how much I had lost. I do find it too painful to talk in great detail about this as it’s all very raw. I then as always counteracted those thoughts with the hundreds upon hundreds of people who came together and supported my campaign, the amazing fundraisers, hard work of friends, colleagues and people I had never even met before. Receiving the warmest messages of love and encouragement that pulled me through some very dark days. Human kindness at its finest. 
I started to become mentally focused, I’d be lying if I said I didn’t cry, panic and have 101 fears running through my mind but strangely at the same time they were accompanied by an air of peace and rationale. I was ready for this surgery and the chance to move forward with a secure head and neck!!! 
It’s very important to me to have an escape, often over the course of the last few years it’s been my music I’ve fallen into or imagining going to various places in my mind and almost getting lost there. I was so fortunate to find this beautiful place that at times made me feel like Ali again, it gave me such comfort and peace to enable me think. It’s a place that will be etched in my memory forever. 

Meeting my neurosurgeon for the first time. 

We had only been in Washington a few days when it was time to meet my neurosurgeon, Dr Sandhu for the first time. I was still jet lagged and struggling with adjusting to the time difference but tried to just roll with it and sleep whenever I could really. 

It was Wednesday 6th September, We all took a taxi down to Medstar Georgetown University Hospital. My first thoughts as we approached the hospital were that of the sheer size with different entrance numbers depending on your purpose for visiting. The site was huge with many campus’s with it being a teaching hospital. 


*A very small segment of the hospital* 

We went up to level 7 of entrance 1 (physicians offices) and checked in and waited to be called. Whilst waiting I had numerous forms to fill out, my vertigo was still bad from the journey so i felt like the paper was moving up and down which made for interesting handwriting!!

Initially I was called by the nurse who was lovely and took my blood pressure, weight, height and asked me some general health questions whilst documenting them on the computer. 


Not too long after I met the man himself. It was lovely to finally meet the man who would soon be performing such a major surgery. I maybe biased but I can quite honestly say with confidence that Dr Sandhu is one of the nicest consultants I have ever met, he is extremely polite, non-assuming, very calming and down to earth. Although the topic of conversation was serious it was an absolute pleasure to talk with him. I had my usual 101 (22) questions all written down and prepared and he was more than happy to answer each and every one. 

We discussed the surgery in more detail, I am very much the type of person that needs to know the details. Dr Sandhu initially pulled my imaging up on the computer and explained how C1 and C2 are dislocating and over rotating and how this compromises the vertebral artery and how my clivo-axial angle was acute causing compression of the brainstem which meant I warranted a skull fixation -C1-C2. Dr Sandhu discussed the method which was his own he had designed. The hardware really is like mechano only much more expensive than at Toys ‘R Us and can be adapted and tweaked for individual anatomy. The most common are T- bars or two rods at the back of the skull but quite often surgeons will design there own method which they have found works well and will use that. Dr Sandhu has designed the ‘grappling hooks’ method which essentially was like two bolts either side of the skull, less hardware but felt they fixated to what is very thin bone in that area well. Dr Sandhu proceeded to show me on his phone the method on an open skull during a surgery, I am a little geek at times so i was fascinated by this and not at all squeamish . Shame I didn’t show such enthusiasm back in the day in biology and I might have passed the exam!! We discussed length of surgery, the potential for ‘surprises’ during surgery especially with having EDS and the risk of excess bleeding due to fragile tissue. I had many questions about other possible complications afterwards like developing tethered cord and instability in other areas of my spine. The truth is this is very much a possibility and all I can do is try and keep those areas as strong as I possibly can and keep an eye on it with symptom tracking and scans. Dr Sandhu explained he would take rib from the back and place this over the fusion with the main aim for this to take and my own bone to grow which is then a successful fusion as you need your own bone to grow as you can’t rely solely on the hardware. We discussed a little about what would happen the morning of surgery and how I would need to arrive 2 hours before and I would be taken to a ward which is almost like a holding area where all patients imminently awaiting surgery go. Here I will be marked out by Dr Sandhu, meet the anaesthetist, possible student doctors and have IV’s placed. I discussed some of my fears regarding my stomach with Dr Sandhu as my gastro system is so shocking, he was extremely reassuring that we would find a combination of medications that would work for my stomach and use maximum anti-nausea medications to try and combat sickness. He was extremely well versed in EDS patients and POTS so knew all the things that could potentially arise. I would say I was in over an hour asking various questions and airing my worries and anxieties, never feeling rushed and always feeling understood. 
At the end of the consult we shook hands again and I said I would see him on Wednesday, Dr Sandhu assured me everything would be okay. I trusted him entirely. 
Seven days to go …….

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.

 

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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.