I began to write this blog as a place for myself to figure out what went wrong in my body, how on earth did I end up like this? It was a safe place for me to chronologically write out my journey to discover the missing pieces of the puzzle – perhaps if I could find out how this happened I could find a way to fix it? It was also a place where I could express myself freely in order to process what has happened to me. I guess it was self-indulgent and now I’ve figured those things out I’m satisfied, I no longer seek to learn more about myself and my journey via my blog. This leads me to a place where I often find myself thinking, that’s enough now, I won’t write anymore, I’m content with leaving my blog as it is. That’s partially because I also have to consider is it worth it? Remember guys I have a certain amount of limited energy because thats’s the way ME works, the body doesn’t produce energy as it should. Each decision we make is based on energy, energy controls our entire existence and every single choice we make. Energy is like money to us, it’s a currency and it has value so we have to ensure we spend it wisely. That’s why I wonder is it worth it? What do I gain from this energy spent? Each time I receive texts, emails, phone calls (most of the time I don’t have the energy to answer the phone so these end up being answerphone messages) and letters from people all over the world, most who I’ve never met and probably will never meet, it gives me the strength and the motivation to share another chapter of my story. As we move forward in time each post becomes more and more personal and that can be quite scary, intimidating almost to put out there for the world to see but with each person it could possibly help, it gives me the courage to keep going, to keep writing and sharing my story.
So, where were we up to guys???
September 2014: I had just spent 7 months abroad in the wonderful world of Oz… Australia! I’d been on a university exchange for part of my second year at uni and saw a significant deterioration in my health during the time I was there after spending the previous 6 years ever so gradually deteriorating, although the rate of decline in Australia had drastically increased. By the time I left the lovely land of Oz, I was down to functioning at around 30% percent and was edging my way into the ‘Severe ME’ category. Whilst I was abroad, I’d spent five months interning at the online fashion platform FashionizerTV who covered the latest fashion shows from across the globe and now London Fashion Week was approaching, it was my job to be the fashion correspondent for FashionizerTV. Up until this point, my Australian boss Sophie had no idea whatsoever of my ill-health as I had been doing most of the work from my bed (literally) in Sydney whereas she was based in Melbourne so I decided it would be for the best to forewarn her of my condition and recent deterioration ahead of our jam packed fashion week schedule. As fashion week arrived, I was bestowed the honour of a media pass for the entire grounds of Somerset House, which meant I could attend any and every show at the London Fashion Week location and of course my overly optimistic self devoted every ounce of energy I possibly could to doing just that! After each show I would scramble back to the media room where fellow fashion nerds were desperately rushing to upload their images & videos to social media, blogs and websites in an attempt to be the first media outlet to report on the latest show. I loved the hustle and bustle, the fast paced life; it’s what I lived for!
My time at fashion week was devastatingly short-lived (in typical ME fashion) as after a mere few days or a few hours (I can’t quite remember as the entire week resembles a hazy blur), I was mid-show, phone out, wildly photographing each covetable look at either the Eudon Choi or Jean-Pierre Braganza SS15 show (memory loss is a symptom of ME) when all of a sudden something hit me. Oh dear lord I was about to pass out mid fashion show, this wasn’t happening, it couldn’t be, it wasn’t possible! The only thing I knew is that I needed to get out of there, IMMEDIATELY, and somehow make my way back home to the safety of my beloved bed. I stopped at about five coffee shops on the way home, collapsing every few minutes along the way, with each second that went by my body was shutting down even further; and the very next day it decided to give up on me once and for all. It was the final straw because not only did my body physically shut down but my brain shut down too; within an hour of waking I wasn’t even able to use the images, videos and information sent to me to continue working from my bed. In a desperate attempt to not let the team down I offered the job to my friend Leila who had a similar sort of fashion background to me. Within a few hours she was in London and I handed her my London Fashion Week job on a plate. If you know me personally, you know how much it would have taken for me to give up such an opportunity (there are no words to describe how this felt). I then had to spend another five days in bed in order to just make the two hour journey home.
October 2014: That was it. My body was done. It was done trying, it was done fighting. It just couldn’t do it anymore (at the level of function I was expecting from my body anyway). I was due to start back at University for the Creative Arts to complete my third and final year of my Fashion Promotion degree but realistically that wasn’t going to happen was it. After fashion week I was down to functioning at probably a little under 30% and I was well and truly inside the ‘Severe ME’ category. That was it. It was decided and ME had decided for me – I would take one year off from university to have some much needed rest and respite and during this time I would simply get better and be well enough to go back to university to complete my degree. It actually makes me laugh that I thought this; oh how naive I was.
My body was still reeling from what I’d subjected it to during fashion week so that as my birthday arrived I decided to push myself (oh how I despise those words) to leave the house for a few hours to celebrate with my family, with an agreement that they would park as close as possible to the restaurant’s entrance to minimise the walking distance for me, (I think it must have slipped their mind or they didn’t understand how much the difference of walking a few metres was beginning to mean to me). I wasn’t getting off the hook that easily though as both my friends and my dad’s side of the family wanted to celebrate too! ‘Oh no I really can’t do this, I’m not well enough, leaving the house for a couple of hours once a week was already a massive push. I can’t do anything else on top of that!’ It didn’t take much persuasion though so the very next day I celebrated with my friends and again the day after that with the rest of my family. I needed to grow a back bone really didn’t I?! These situations I often found myself in were clouded by emotions such as, guilt, fear, disappointment, loss, sadness and also pressure so sometimes it was easier to say yes and suffer the physical torment afterwards than to have to deal with the emotional torment attached to saying no. This was a real inner struggle for me and something I’ve learnt along the way is that saying no takes practice, it takes time and it takes an unruly amount of self-discipline. For how long would I continue saying yes until my health finally became my priority?
Don’t get me wrong I’m not looking back on these memories with self pity, that couldn’t be further from the truth. I look back on these memories and I see the good, the enjoyment, everything I’ve achieved and done with my life despite facing chronic illness. I only share my story in order to educate, to help people understand because an understanding really does make the world of difference to people who spend their lives fighting the ongoing, turbulent battle of being chronically sick.
FLUCTUATING – this is a key word that describes ME. Our symptoms fluctuate in severity throughout the course of each day, each week, each month, each year and for some people an entire lifetime. This explains why sometimes we are able to do things whilst other times we’re not – I often encounter this query with ‘healthy’ people and the answer is as simple as ME is a fluctuating illness. Looking back to December 2014, I remember my best friend, Rachel and I took a trip to Birmingham’s German Christmas market to get ourselves into the festive feeling. To both of our surprise, the day didn’t go as planned, and not in typical ME fashion – I was able to both stand and walk for much longer than we had anticipated meaning we could spend more time shopping for some wonderful winter delights! I guess you would call this one of my ‘good’ days, still bad in relation to back when I was deemed ‘healthy’ but ‘good’ for me and an example of how unpredictable the fluctuations can be.
POST EXTERTION MALAISE – The predominant symptom of ME is severe constant exhaustion that isn’t relieved by any amount of sleep or rest and secondary is the malaise (these are the 25+ other symptoms of ME) following any sort of activity/when any amount of energy is spent. You’re learning a lot of things about ME today aren’t you! The full extent of symptoms only becomes apparent around 24 to 72 hours after the activity (assuming, of course, the person was not already in a ‘recovery period’ from a previous activity and if this is the case then it’s even longer). This is what makes ME so difficult to predict because we often have stable symptoms during an activity, meaning they’re present but not worsening during the activity, and then they only begin to worsen when your energy pot is already empty and you’ve already gone into your ‘debt’ or ‘minus’ energy. To sum it up you’ve already over done it before your symptoms start to worsen to warn you you’ve over done it. This often means it’s too late. These symptoms can then continue to worsen for days, weeks and sometimes months until they stabilise and then ever so slowly you begin to improve. This varies enormously depending on the severity someone has ME and how much you’ve over done it or gone into ‘debt’ energy so everyone’s recovery periods for different activities is different. This recovery period is also known as ‘the crash’ or ‘payback’. Does that make sense? Fellow ME folk comment with tips of how to simplify this if you can!
January 2015: By not allowing myself to recover from almost every activity I’d done in the last seven years meant that as we entered 2015 I was down to functioning at around 25%. An example of this level of functional ability is that I was now conscious of the large amount of energy opening and closing my bathroom door and lifting my arm above my head to flip a light switch was draining out of my energy pot.
Around this time I began attending the CFS/ME Service at my local NHS hospital (this was once a week and the only time I left the house in January). I assumed that this meant I would get treatment for my ‘ME’ and I would be on the road to recovery in no time. When my medical team of occupational therapists and physiotherapists told me otherwise my eyes finally began to open up to the reality of what an ‘ME’ diagnosis really meant. Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a group of symptoms (that’s what the syndrome part means) with an unknown cause meaning there is no cure and no treatment. What we do know from biomedical research into ME is that there are physical abnormalities in the immune system, the nervous system, and the energy production/muscle system. This means that ME doesn’t effect just one bodily system, it affects many systems hence why finding the cause is so damn difficult! It’s thought that there isn’t a singular cause but an accumulation of different causes which can be compared to finding a needle in a haystack. ME is known as a ‘serious, chronic, complex, systematic disease that can profoundly affect the lives of patients’ (taken from the prestigious US Institute of Medicine report Feb 2015). Prior to attending the CFS/ME Service I knew none of this so upon learning this I realised that it was unlikely I would be well enough to be able to return to university in 9 months time and it also meant that I would need to start using a wheelchair on a permanent basis so my small pot of energy was spent on more essential things (yes walking was no longer considered essential).
I began to realise how complex this illness really is and that the only thing that the NHS could offer to help me was ‘symptom management’. This was to help me live my life as best as I could with a chronic illness and by chronic I mean long-term and ‘it’s not going to go away’! Healthy people tend to not understand this part. I felt like I had changed my life so much already to accommodate this illness already and I thought it was enough but I guess it wasn’t so I chose to take on this illness as if it was a subject and I was studying a degree in ME. I spent the next year learning everything I possibly could to aid my situation. After all knowledge is power!
Throughout my research something I became aware of was the CFS Functional Ability Scale and it made me realise how sick I had actually become (I was totally unaware of the different severities of ME until I started at my local CFS/ME clinic). I use a combination of Dr Myhill’s Scale (she is one of the leading researchers & specialist doctors of ME in the UK) & AYME’s Scale (the Association of Young People people with ME is one of the leading charities for ME in the UK). You can see the scales below… They can be used to identify the severity of ME & whether people are improving, stabilising or deteriorating. This is how I’ve been able to go back to the beginning of my ME journey and chronologically map out my gradual deterioration.
Lets fast forward a few months to May 2015: On May 12th 2015 I held an ‘Afternoon Tea for ME’ as part of international ME Awareness Day and ME Awareness Week. I am very proud to say that we raised a total of around £500 for a charity called The ME Association.
For about a year or so I’d been experiencing a strange new symptom/feeling and the only way I can describe it is that it feels like I have been hit by a bus. Imagine being hit by a bus and what you can imagine is how I feel. It’s sort of like a dull severe constant ache as if I have intense bruising and soreness throughout my entire body. I’d also noticed specific tender points where if pressure is applied to them it causes severe sharp pain so I’d had to give up showering (don’t freak out – I bathed instead) because when the pressure of the water hit the tender points in my neck and shoulders it had become unbearable. On the day I held the afternoon tea I developed a new type of pain, a strange burning sensation that rapidly spread throughout my legs, it felt as if my leg muscles were actually on fire. It seemed to be that there was a pattern each time I ‘overdid it’ I seemed to develop a new sort of pain and once I acquired that pain, it never went away. I now have a variety of over 10 different types of pain present at all times but fluctuating in severity so when people ask me – “how’s your pain?” I reply with, “which one?”
June 2015: The movie ‘Cake’ starring Jennifer Aniston is one of my favourite movies of all time; it’s not often I can relate to a character in a film as well as I can with Claire (Jennifer Aniston), the protagonist of the movie Cake, who suffers from chronic pain. She captures a heartbreakingly true portrait of the trials, tribulations and limitations of a life lived in chronic pain. Aniston portrays the pain with such conviction that I feel her pain, I understand her pain and have empathy for the every day battles she faces both physically and emotionally. Cake shines a much needed spotlight 0f the true essence of suffering experienced by a person with chronic pain and successfully translates it from an invisible disease to a visible one for the audience to witness.
Not long after watching this movie I had a consultation with Professor Powell, a private specialist in clinical immunology and allergy who had diagnosed me with ME 3 years previously. On this occasion he went on to diagnose me with Fibromyalgia, a chronic pain condition and another condition called Multiple Chemical Sensitivity, both in addition to my ME diagnosis. Fibromyalgia (FM) is a chronic long-term musculoskeletal condition that causes wide-spread constant pain throughout the entire body, including in the nerves, muscles, tendons and ligaments every second I’m awake. It’s also known as Fibromyalgia Syndrome (FMS) or Fibro for short.
Multiple Chemical Sensitivity (MCS) is a chronic condition where low-level chemical exposure produces varied numerous symptoms. The chemicals are often common ones that enter the body either through inhalation, ingestion or through the skin, such as, perfumes, flowers, paint, toiletries, hair & make-up products, cleaning products, certain foods, petrol fumes, air pollution, hair-dye, medication, smoke, synthetic fabrics and pesticides. Any chemical that enters the body has to be ‘detoxified’ (broken down) and eliminated but in MCS there’s an alteration in the bodies ability to detoxify and get rid of chemicals, combined with an increased sensitivity to the effects of these chemicals on the body. The chemical load is simply too much for the body to handle/tolerate so I have to avoid these chemicals as much as possible because they make me even more sick than I already am.
July 2015: It had been 10 months since I’d returned home from Australia and it had been 10 months of continuous deterioration. This deterioration had been my usual steady and gradual decline until July 2015 when something different happened; I’m not entirely sure what it was but it was something different that’s for sure. One fine Summer’s day I made my monthly trip out of the house for a few hours to enjoy the sunshine only to find that when I returned home my body, my life and my health would quite frankly, never be the same again. Those few hours had taken me one step too far over the edge, it felt as if I’d walked off a cliff or I’d been thrown into a deep dark black hole. I was falling and falling, waiting for it to stop, to come to an end but it never did and like a never ending rabbit hole I watched my body, my life and my health spiral downwards out of control and free-fall infront of my very own eyes.
By the third week of extreme rapid decline, my functional ability had reached an all time low and I was well and truly inside the ‘very severe’ ME category. I was down to functioning at around 5% on the CFS Functional Ability Scale. I could no longer lift cutlery so I couldn’t feed myself and I didn’t have the energy to chew solid foods so I lived on a liquid diet for a while. I couldn’t lift my phone, I couldn’t type, I couldn’t even lift a pen. I was unable to talk so I did what my brain would allow me and developed a combination of signals to communicate with those taking care of me. This was also the first time I experienced complete paralysis in the arms and legs, which would last for either hours or days at time. This meant I was either carried to the toilet a few metres away from my bed or at times I would drag myself over the edge of the bed knowing I would fall onto the floor and then I could pull my body across the floor and lift it onto the toilet. The paralysis ensured I lost all feeling in my legs, they were completely numb and a dead weight as if they weren’t even attached to my body. My body produced so little energy that breathing was the most I could do with my body in a day. Just getting to the next breath felt like a stellar achievement and when I made it to the end of the day and awoke the following one, I was happy yet relieved to see that I was still alive and breathing. Much of this time I spent in a state of unconsciousness, the demand of being awake was simply too much for my body to handle and it was in such a ‘crisis’ mode that blacking out was my bodies automatic response to handle the state it was in. I wasn’t even well enough to be awake.
We know that ME is a fluctuating illness and after exerting energy during an activity we experience ‘payback’ or the ‘crash’, where we have to suffer more than we usually do during the recovery period for this so called activity. A few weeks later we were unsure if this really was ‘payback’ as I had never experienced it to this severity or for this length of time before so we called my GP out to see what she thought. As well as a decline in functional ability my pain levels were through the roof. I could no longer wear clothes as the pain of the fabric touching my skin was all too much; and when the gp was examining my arms & legs, the slightest touch felt like someone was stabbing me so I was screaming out in pain! I have never been in so much pain in my entire life. Even being in bed with my arms touching the sheets was unbearable. My GP had no idea what was happening to me as she had never encountered anyone with ME this severe before so she immediately sent an ambulance to come and get me and I was admitted into a local hospital. She advised I went into the best hospital for a long term stay as she thought that as well as investigative tests I would be in there for rehabilitation so the specialists could try and get my condition under control.
Upon arriving at the hospital the nurses were horrified that I’d spent the majority of the last 10 months in bed with no hospital admission until this point in time. The doctors suspected, Multiple Sclerosis, Tuberculosis, Lupus, Meningitis, Bone Cancer or Brain Damage. I was put on a stroke ward whilst the tests were ongoing with access to occupational therapists and physiotherapists to help me to learn how to stand and to walk again just like the stroke patients did. I was told that I wouldn’t be leaving the hospital until my functional ability was beyond standing and walking again. Then five days later after all sorts of tests, a stroke consultant came to me and said, “I’m sorry but we do not know what is happening to you. Our tests do not show what is wrong with you and this hospital doesn’t have the specialists and the expertise to find this out. This must be ME but unfortunately there isn’t an understanding of what that is yet, especially here in the UK. I’m a stroke consultant and I’m the person in this hospital who is closest to finding out what is wrong with you. We can’t help you so we have to send you home today and if you don’t improve you will have to be tube fed.” His words hit me like a tonne of bricks, it felt as if I’d been shot, I burst into tears, crying in pain, comforting my broken body. I didn’t understand so I asked him, “What am I supposed to do now? Spend the rest of my life in bed?” His response was, “I’m so sorry. It’s extremely rare for ME to be this severe. It’s less than 5% of people with an ME diagnosis who function at under 10% and are in the ‘very severe’ category.” I could not walk, I could not stand, I could not sit up and I couldn’t even lift my own head off the pillow. Then I was lifted out of my bed and into the wheelchair, lifted into the car and sent back home to carry on living my life from my bed. This was a huge blow for me and my family and it didn’t take long to establish that this wasn’t ‘payback’ or ‘the crash’ – this was my new reality and I’m still living in that same bed, 8 months later to this very day.
These photos show me during the few hours I left the house in June and July and just a few weeks later when I was admitted to hospital. I don’t usually take photos like the one in the centre because I don’t see myself and all I can see is sickness but my mum insisted on taking one so in the future I can look back and see how far I’ve come. People often make comments to me such as, “well you don’t look sick” or “you don’t look sick so how sick can you be” and “but you look so good so how is it possible you’re that sick?”. People cannot see our sickness – we don’t have cuts, scars, bruises and we’re not covered in blood so we might not look sick on the outside but that doesn’t mean we aren’t sick on the inside. The chronic illnesses I have are known as ‘invisible illnesses’, which leads to doubts, disbelievers and judgements of our ill health based on how we look. Over the last year and a half I’ve spent in bed I’ve been able to do a lot of thinking (when my ME brain allows me of course) and the more I think about it, the more I question whether these illnesses are actually invisible? I typically don’t allow any friends or family to visit if I’m functioning at below 15% on the CFS Functional Ability Scale and even when I’m above that level and I do see them, it’s only my ‘good’ days so they only see me at my best. ME is a fluctuating condition isn’t it so they don’t see how much more we suffer during the recovery period of ‘the payback’ and ‘the crash’ and they don’t see us on our ‘bad’ days. So next time you encounter someone with a chronic illness and you judge them based on how they look – take into account that it’s most likely their best day possible and really have a think about what may be going on behind closed doors. A little empathy goes a very long way to those who are chronically sick and I’m telling you now that it will do the world of good for your friends or family members who have an ‘invisible illness’ for you to understand that their illness isn’t so invisible after all.
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