A Downward Spiral….

It is most definitely true what they say that the longer you leave something the harder it is to pick up and get back into.  In truth, the last five months have been and continue to be gruelling, the amount of symptoms I am enduring has made it difficult to even function on a “around the house” basis resulting in a monumental amount of neglect to my blog.

When my health becomes unmanageable and many symptoms and systems fire off simultaneously I tend to go into ‘hermit mode’. I withdraw from social contact whether that be through social media or in person. This isn’t because the desire to be around and interact with people has gone its because my physical ability to do so has diminished to such an extent I am on the whole unable.  My reserves have gone and the engine is chugging through on empty.  This is when the world of chronic illness I am in becomes extremely isolating and lonely.

In my last blog I touched on how hard it can be to manage the constant ebb and flow of symptoms, how you yourself can find it mind boggling how your capabilities from day to day are ever changing and you just don’t know whats around the corner.  It is extremely hard to ride the waves and go with the flow.  It requires an inordinate amount of mental strength and agility.  What about when there are no waves to ride?  There is just a giant sinkhole and you’re right in it. You tell yourself “things will go back to there usual level of uncertainty/symptoms in a week, next week, the week after”.  Soon a month has passed and you are still in this decline, will it ever end? Two months become five months, you are still declining. This is unchartered territory. 

You name it I can guarantee my digestive system and I have been there over the last 10 years. Gastritis, erosive gastritis, H-Pylori, Sibo, abdominal adhesions surgically cut, dysphagia, colonic inertia, heartburn, choking, acid reflux, nausea, severe gastric dysmotility, malabsorption, nutritional deficiencies, diarrhoea, gluten intolerance, extremely limited diet, severe pain, nutritional drinks and some more gross aspects we don’t need to go into further!! The truth is I am never without a stomach symptom, each day is like a lucky dip of any of the above.  As well as never being without a symptom my pain is never below a 5 in my digestive system anywhere from my oesophagus to the back door!!  When you have been in chronic pain for so long your body can learn to adjust, it almost acclimatises to it and when my pain is at a steady 5 I am much more functional.  I used to go through what I called flares whereby my pain would be anything from a 6-10 again with a multitude of the above symptoms and extreme abdominal cramping.  Like with anything I never knew when the flares would come they just came and went as they so wished.  I spent years trying to identify patterns, foods, triggers to the point it exhausted me and the truth is like anything with EDS it will just come.  I could be down and out anything from a day up to two weeks before the usual order of 5 was restored.  My body would be wiped out and I’d slowly regain strength. 

Around 10 months ago I was noticing I was needing a medication I reserved for “severe flares” more regularly to try and control the pain, it then became I was taking it daily.  It then got to the stage where it was having little to no effect at all. I switched it up with a different brand that did the same thing however still found no relief.  Soon my pain was a 8-9, I was missing valuable medical appointments and I was struggling to do the things I had worked hard to build up since my neck surgery, I felt the rug was being pulled from under me yet again. I continued to tell myself “this will ease off”. This is quite a common and a much needed pattern of thought in the chronic illness community “this pain will end” to help us get through that moment, that hour, that day. It didn’t end though. 

One afternoon in early summer I was eating my lunch and the already 8-9 pain soon became a 20, I didn’t even know pain like that existed.  My heart began to race, I started to sweat, the pain was so intense I couldn’t scream, shout or cry. I woke up on the bathroom floor, my lip bleeding and a chip in my bottom tooth.  The cramping was causing unimaginable pain.  I was sweating yet shivering, I clambered up onto the toilet and down I went again and woke up well…. in a situation shall we say !! This was familiar, I had these types of attacks before 1-2 times a year.  They are extremely frightening. The cramping becomes so severe my body basically shuts itself off almost like a system reboot and I faint.  I decided to remain on the floor as it was dangerous to be fainting from a seated position to the floor with a fused neck and I valued my teeth!!I lost all my dignity this day. Unlike previous episodes this continued for much longer and with such velocity. The next day I weighed myself and lost the predictable 5 Ibs I always did after these episodes.  The usual pattern would be id be tender and more sore than my “usual” for a week or two then I would go back to my “usual” and the weight would come back on.

  Five months down the line and the pain is still reaching a 20 daily anything from 0-5 hours after food/liquid intake and sometimes no food is required for it to occur.  Although my diet is limited to around 10 foods I have forced myself to eat knowing whats coming thereafter, which is no mean feat yet I have continued to lose weight.  My wonderful dietician came round to do a home visit a few months back,  she calculated my daily calorie intake and although its not a diet where you would put hoards of weight on it was enough to at least maintain a weight, she also included 2-3 ensure plus drinks at around 400 calories per drink yet I have continued to lose weight.  The pain has resulted in the gains I started to make 6 months after my neck surgery to be undone, preventing me from attending valuable medical appointments, become even more deconditioned and I continue to faint when the pain becomes unbearable. I feel weak with overwhelming fatigue grappling with pain so severe its wiping me out. Looking at myself so thin is not easy, I’ve invested in lots of baggy jumpers in a vein attempt to hide the weight loss.  The mix of frustration and sadness is crushing. Im eating through such pain, doing everything advised and yet I am still losing weight. My GP has written to my gastro consultant and dietician to try and bring my appointments forward she is concerned, as are we that I have now lost 20% of my body weight and the continual level of pain and fainting from the pain is serious.  I am unable to take opiate based medication or anti inflammatories as my stomach lining is like tissue paper and develops sores/bleeds on the medication even with stomach protectors creating another problem so managing pain is very difficult for me like it is for many with EDS. I am on a medication which so far isn’t working however I am working with my doctor to increase it 10 mg every two weeks, if at the maximum dosage it still isn’t managing or dialling down the pain which right now I would settle for I will then have to be weaned off it.  With EDS this could be a number of things or it may not have anything to do with my EDS, I don’t really want to speculate other than we don’t like the direction this is going right now.

I would love to say the summer months saw an increase in sun, sand, sea and sangria, I explored new places and made wonderful memories. In my mind I did. In essence the summer months were on the whole spent in my house, at hospital either through A&E or appointments. My dysautonomia/POTS took a big hit during the summer.  Looking back I think it was a combination of the uncharted hot weather and the major gastro flare. I was feeling a lot of palpitations for a few days, I didn’t really think much of it at first and tried to increase my fluid and salt intake which wasn’t easy with my stomach. As the days passed I felt worse, I checked my heart rate and found it to be 181 bpm, oh heck.  Often I can neglect certain aspects of my health, think it will pass and try and ignore it especially when my stomach was all consuming, it was/is taking over the show. Nick and I made the trip to A&E, once in triage and the nurse saw my heart rate at 162 (sat down) she soon bolted out of the room to get a doctor and I was taken into majors. 

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I explained about my conditions and my theory was the hot weather combined with dehydration and a gastric flare etc had amplified my POTS. Essentially my blood was pooling in the lower extremities with a weak flow to my heart causing an increase in cardiac output leading to dizziness, breathlessness, tremors, weakness and a super fast heart rate. We agreed on the first line of therapy to be an enormous bag of saline solution, they brought a huge bag and put it on the fastest rate to get it into me quickly.  I had blood tests and an ECG.

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I did numerous stand up bedside tests and the doctors could not believe what happened to my heart rate just on standing. Around half way through the bag I started to feel a little better tachycardia wise and we repeated the stand up test, my heart rate was now 140 bpm, still ridiculous but we were going in the right direction. They did notice my resting heart rate (lay flat) was low in the 40s which made it quite a dramatic jump when I stood up.  I explained I had only been in A&E a few weeks prior with a heart rate of 37.  I was placed on a beater blocker for my POTS but as I had a low resting heart rate it was bringing it down too low to worrying levels.  I have since been pulled from this medication and have beater blockers now when my heart rate goes too high and stays persistently high for a few hours I have to take one on a ‘as and when basis’. 

The last few months have felt like an endless stream of hospital appointments and tests.  It has seen us travel to various hospitals for nerve conduction studies, self-catheterisation lessons (now there is a funny story for another time), cardiac appointment, gastro appointments, copious amounts of blood tests, orthopaedic surgeons, orthotics, ENT, Opthamology and pain management.  I have also missed important MRI scans, spinal cyst appointments, hydro sessions and much more due to the severity of my pain.  I have an enormous amount of appointments ahead of me.  Although I am grateful to have the appointments I cannot tell you how much they take out of me with the travel and waiting times etc.  I can be out for days after. Sometimes I feel like I am chasing my tail on the never ending merry go round and not getting any further forward in many respects.

It feels like someone has pressed pause, its groundhog day. Im stuck in some kind of purgatory I am unable to get out of. I look enviously on at people living there lives and I feel stuck in time, not moving forward. Living with this level of pain and disability the last 5 months has been one of my biggest challenges to date. There hasn’t been a day I haven’t sobbed my heart out with grief, anger, frustration, guilt, exhaustion, boredom and above all PAIN. I am known to be very stubborn, push myself to the limits and often fight against my body and symptoms however the pain the last 5 months has brought me to my knees and I am fearful.  I am not fearful of what is causing the pain, more the thought of will this end.

“Im okay” this phrase will go down in history as “Alis most used phrase”. I find it difficult at times to articulate the pain that EDS brings to my life. The pain is widespread and differing in how it feels from burning pain, shooting pain, dull aches, pressure pain to severe cramping. How can you possibly get people to understand this when on the outside you look okay? It essentially effects everything from my head down to my ankles, muscles, nerves, soft tissue, ligaments, arteries, blood vessels, stomach, spine… yada yada. You can be hit by multiple pains within the same day at the same time, joint dislocations or subluxations, head pressure like your head will combust not to mention the symptoms POTS and dysautonomia bring. Each time you stand up you’re dizzy and almost faint, your heart rate is that of a marathon runner just from sitting to standing, your bladder decides its not working today, you have tremors so bad you keep your hands in your pocket so no-one can see, you’re so fatigued you feel like you’ve got the flu, Im not talking ‘man flu’ I’m talking fully fledged flu.  How can you get people to understand when on the whole you look okay?  You eat a biscuit and spend the next 4 hours in unbearable pain feeling like you’re dying, faint through it and then are so fatigued you have no choice but to go back to the oh so familiar place-bed.  No one knows as it happens behind closed doors. Now…. I could go on and on here, I guess what Im trying to say is it is so hard explaining to people your symptoms, that you’re not ‘better’, that not much has changed since the last time I saw you 5 months ago especially when you look ‘okay’. When people ask me how I am I find it easier to say “Im okay” I almost don’t want to appear negative, pride takes over . I am known to have a sunny disposition and I don’t want to lose that aspect of me as I’ve lost so much already so “okay” slips out. I am slowly realising it is OKAY that you’re NOT OKAY and its OKAY to say that.  I felt uncomfortable whilst writing this blog piece feeling it was negative, lacked humour and the usual cheeky joke here and there however it is a true depiction of where I am right now….

“It is perfectly okay to admit that you’re not okay”

 

 

 

Health update- Part 1 (Head and Neck)

Following on from my post yesterday I am going to do a few health updates in various parts to bring everyone up to speed. I have so many ideas of topics bubbling away in this brain of mine I really want to write about but for the purpose of fluidity they won’t really make as much sense without me touching on my current situations. The updates may not be the most riveting of reads however it paints a picture for my future posts. This will be the longest of my updates so line yourself a few expressos up and pop a pro plus whilst I try and articulate what this body of mine is up to.

Those that have followed my journey from the start will be aware one of the most disabling aspects of my health is chronic continual headaches, the term headache simply does not do these beasts justice.  Prior to 3 years ago one thing I never suffered with was headaches then in April 2015 I banged the back of my head and neck quite forcefully and the “headaches” soon commenced. We did not pursue or explore the origin of these at the time as I was also diagnosed with instability in my neck, given neck instability particularly cranio-cervical instability can cause headaches I had pinned ALL my hopes on this symptom amongst many others dissipating after fusion of my skull and neck.  When I realised the headaches were still very much alive and kicking I cannot express the utter sorrow, sadness and loss of hope I felt.  On reflection I should have been more realistic in the outcome that surgery is not a fix for everything and its primary aim was to stabilise my neck and to prevent any further damage which so far it has done.

So what are these headaches like? Here goes…….

Firstly I would like to point out the pains are there constantly ranging from a 5 where I have almost learnt to get by with it and almost call it “irritating background pain” all the way to a 9/10 whereby I am on the floor willing someone to remove my head and ended up in hospital numerous times. I genuinely cannot imagine a worse pain and anything in-between that scale. They can be extremely unpredictable and fluctuate in intensity throughout the day, they can either hit extremely hard from nowhere or build up over the course of the day but they never leave.  We’ve all suffered regular headaches in the past from one too many, too long at the computer etc just imagine that x10 all the time then that x20 numerous times a day.  This is the main symptom stopping progression of other areas of my health as I have to lay flat with ice around my head for large portions of the day. The pains feel like a heaviness at the back of my skull alongside someone taking sharp knives and stabbing it, the back of my skull can throb and often feels like someone has taken a baseball bat to it. Accompanying said knife/baseball bat comes intense throbbing/pulsating of the whole cranium which spreads into my teeth, face and eyes. When I stand or lean over it quite literally feels like my brain is going to pop out of my skull the pressure is unbelievable. Alongside this I get visual auras, blurred vision daily, loss of focus/clarity (all the time), loss of vision, greying of vision, dizziness/vertigo, poor balance, tinnitus, whooshing in my ears, stiff neck and shoulders . I can almost hear my own voice echo loud when I talk  which is beyond irritating, if someone is trying to talk to me and the television is on or its a 3 way conversation its like my brain cannot process it, its too loud for me which in reality I know it isn’t, I will have to either put my fingers in my ears or remove myself from the situation.  At the beginning of these headaches there was a postural element whereby if I lay flat they would ease somewhat but over time the postural element has subsided.  Not only are they impacting on me being able to access other aspects of my healthcare and attend appointments they are also impacting my ability to communicate with people for any period of time or be around noise.

This is where is gets complicated ……

We recently went to see a neurologist who takes a particular interest in headache disorders. He was absolutely lovely asking numerous questions about my other health issues and completely dissecting the various headaches, pains and symptoms. It was kind of one of those appointments where you feel extremely understood and listened too yet come out with more questions than you went in with. He thinks there could be a few possible causes of my headaches which will involve invasive investigations. He also felt one aspect of the headache was secondary migraines which he said can occur when you have head a continual headache from a different origin for an extended period of time other types jump aboard too!!  At present we have been trying to treat the migraine aspect of it, so far to no avail.  I was placed on propranolol which is used to treat chronic migraine it is classed as a preventive medication to take continually. As it is in the beta blocker family we thought it would help my POTS also, my track record with medications is not a good one but I was willing to try anything through utter desperation. The first few days on propranolol were fine other than a bit more tiredness I had no adverse effects, I was extremely happy and hopeful this would at least start to mask some of the pains. Around day 5 I started to feel extremely weak/dizzy more so than usual and noticed my blood pressure starting to drop and heart rate was getting lower. Initially it was a welcome break to be able to stand up and not have your heart rate jump to 130 bpm from pots and continued to take the tablet as I was desperate for an ease of the head pain. Saturday night came and I was lay watching a film and from nowhere my heart started to flutter (I wasn’t watching Orlando Bloom), I went clammy and started with crushing pain in my chest although this didn’t feel like a POTS attack I suspected it was and took my heart rate to find it was 42 bpm, this continued and I tried to walk round to increase it however it would not go higher and I felt extremely faint.  After 30 minutes of this it then started to jump erratically from 42-80, 80-130 etc etc then if I lay down it would got back to the 40’s. I was being quite stubborn and hesitant not wanting to go to A&E as my life is just filled with hospital appointments however it did get a bit much and we decided to ring 111 the operator sent an ambulance which I said I did not need however once you mention chest pain and heart rates I think it is a mandatory protocol they follow.  The ambulance arrived by which time it had levelled out a bit but they said they could tell I’ve had a low heart rate as it was 59/60 when they arrived and they said usually peoples heart rates are sky high when they arrive just by the sheer fact an ambulance is there.  They did a quick ECG, blood sugar, temperature and they also noted my pale paler and clamminess.  After much persuasion I agreed to go with them to get checked out to ensure it wasn’t any kind of heart attack.  Once in A&E they did bloods and another ECG.  When doctors were in the room my heart rate was over 60 which is normal but very jumpy then once they left and I lay down quietly it would drop to the lowest 37 and my partner called them in to see and then they saw it shot within a second to 65.  I felt exhausted. Below is a picture we managed to grab of my heart rate at 39 BPM, Mo Farah has nothing on this….

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The bloods and chest x-ray came back clear and I was advised by the doctor to stop the medication immediately, I asked if I could try it one more day to see if my body just needed to adjust she could see I was desperate for my pain to ease from the headaches but she said its far too dangerous to have a heart rate of 37 and it jumping so erratically she felt if I took one the next day it would get even lower and I would be back in. My heart had stabilised somewhat and I was sent home but told to go back if it dropped again. We arrived home around 3 am and I went to lie down and it dropped to 41 I was adamant I was not going back so I walked around my house for an hour trying to get it to rise.  Sadly with it being a bank holiday I could not consult with my neurologist or GP, we have since let them know and are awaiting where we go next in terms of treatment.

The possible causes of the main headaches I will list below and can be seen in Ehlers Danlos syndrome and other connective tissue disorder types. They are notoriously hard to diagnose and many people have been diagnosed with migraine initially which was unresponsive to the treatments and after invasive investigations the source was eventually found after many years of suffering.

Theory 1-

A CSF leak. With connective tissue disorders the dura which is connective tissue that surrounds the brain and spine can be very thin/fragile and can tear either spontaneously, through injury like a whiplash or other defects within the spine. This causes a tear in the dura whereby cerebral spinal fluid which coats the brain and spinal cord which flows constantly leaks out of the tear/defect causing what they call a low pressure headache.  Alongside the headache comes other symptoms and neurological manifestations namely what I am experiencing above.  They can be notoriously hard to find if the defect is small.  They often test the pressure via a lumber puncture to see what your opening pressure is or by a bolt placed in the skull.  They sometimes do a CT myelogram which injects dye into your spinal cord that can show the dye leaking out of the defect. If the source of the leak can’t be identified sometimes they do a blind blood patch where they inject your own blood into suspect areas of the spine in the hope it forms a clot and seals the leak.  They can also move onto fibrin glue or worst case scenario surgical intervention.

Theory 2-

Blood flow issues. With EDS the blood vessels in the head and neck can be sluggish and some patients have had occluded/collapsed vessels/arteries therefore the adjacent vessels/arteries are having to do all the work of pumping the blood around the brain.  A test for this would be an angiogram to see how the vessels and arteries are functioning.

Theory 3-

CSF flow disturbance. Along my spine I have some degeneration, disk disease, congenitally fused parts, a scoliosis and an intra dural spinal cyst with noted CSF disturbance.  We are not yet sure if this cyst is just an incidental finding or if one of two things could be at play.  Either the cyst has caused a csf leak as discussed in theory 1 or if the cyst is acting as a damn and preventing the free flow of cerebral spinal fluid.  On the picture below you can see white space around the spinal cord which is CSF, in the middle is where the cyst is and you can see a marked disruption of fluid.  The picture on the right is a back view more of the bone and my scoliosis.

 

Theory 4- 

High intracranial pressure.  Many people with EDS, although this condition is by no means exclusive to EDS can have pressure issues within the brain. This theory is that the pressure in my brain is high which causes severe headaches, nausea, visual disturbances, tinnitus and much more.  To diagnose this would be an ICP bolt placed within the head to test the pressures. The bolt tends to be more accurate than a lumber puncture as it will give you continual readings over however many days you are in hospital with it in and the specialist can have you moving, bending and see what happens to the pressure in your brain.  It is also deemed safer for connective tissue disorders as a lumber puncture can infact cause a CSF leak (theory 1) by tearing the dura so you may have had high pressure however from the investigation it has caused a leak and now you’re suffering low pressure.

You can see from the various theories the symptoms are all quite similar which makes it extremely hard to distinguish which course of action is best to take so at present we are at a cross roads.  We have to weigh up risk vs benefits however at the same time I can no longer live with the level of head pain and the symptoms that accompany it.

Now….if you have got this far thank you so much as I know that was a long one.  Id say step it down a notch and make yourself a cuppa for the next part.

Neck-

Since being fused the muscles in my neck are extremely tight,painful and go into spasms which isn’t easy to live with daily but at the same time this is the nature of the beast of neck fusion with limited neck movement. Biofreeze, heat and ice are my best friends. A few months ago we had a bit of a scare whereby the pain increased and was “different” my neck also started to click and almost catch.  It was frightening. I contacted my surgeon who advised an earlier than expected CT scan to ensure the hardware hadn’t moved and the bone was still where it should be.  We went for a CT  scan, once in receipt of the images we uploaded them onto the computer and panic set in, my fusion appeared bent and warped.  Note to self Ali there is a reason radiologists have years of training you are NOT a radiologist. We sent them to my neurosurgeon in Washington who immediately reviewed them and was happy the hardware was still in place and the rib graft had not slipped.  Then ensued 100,000 questions from me!!  He explained depending on the angle of images taken will depend on how it looks, essentially from certain angles/views it will appear bent and misshapen however it isn’t.  He said there is some element of ensuring the hardware fits your anatomy during surgery so rods may have to be moved so no two fused people will have the same images.  We were so relieved by this. We also got a report from the radiologist who did the scan with words of the same effect. Below are a handful of the hundreds of images taken, to be fair you can see by picture one why we were concerned.

 

 

Over the course of the next week I will be doing other health updates as there is an awful lot going on and aim to be all caught up and blogging order to be restored within the week (or so) as I really want to get stuck into writing about some particular subject areas.  I predict around 4 more combined updates still to come.

Thank you for taking the time to read and follow my journey, it means an awful lot to me.

Much love

Ali xxx

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.