Invisible Illnesses

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.

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Beth’s 21st Birthday Party with friends from my primary school

December 2014:

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.

 

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Christmas Crepes with Rach

 

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.

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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.

Please share this post to help raise awareness and understanding about invisible illnesses!

23 Comments

  1. Kelly skinner May 21, 2016 / 10:49 pm

    Hi Emma, I’ve just re-read your blog as I don’t think I took it all in the first time. You are such an inspiration & I’m so glad you are managing your small but gigantic goals! Keep on at it!! xxx

    • Emma May 21, 2016 / 10:52 pm

      Thank you so much Kelly! Exactly to other people it’s small steps I’ve made but I & those close to me know how huge they really are xxxx

  2. Dani April 7, 2016 / 11:22 am

    Fantastic blog, Emma. It’s very inspirational. I’ve been diagnosed with MS a few years back, luckily a mild version. Ever since my life has changed as I am trying to concentrate on family/friends and the things I am passionate about. I’ve changed my diet a lot, which you’ve probably done too and this keeps my energy levels up. I can’t imagine how it is when energy levels are on a constant low and I really hope your energy levels will improve. Keep on going, you are not alone. I have also never heard of ME so your blog post has made me aware of it and I shared it on my Facebook page so my lovely customers who are often in similar situations can read about your story too. Thanks a lot, Emma!

    • Emma April 8, 2016 / 11:49 am

      Hi Dani, thank you for your lovely message. I truly understand how chronic illness changes our lives and how we have to adjust to our new ‘normal’. The amount we can do certainly changes so we also have to figure out our priorities as we can’t try and do ‘everything’ anymore like our old selves probably did. ME is also know as CFS or chronic fatigue syndrome although I don’t use this term because as you can see from my posts I am in on way shape of form ‘fatigued’ or ‘exhausted’. Thank you sharing, i appreciate it! I’m about to buy a glass water filter jug from your site to get rid of my nasty plastic one 🙂 Take Care, Emma xx

  3. Sophie March 21, 2016 / 10:48 am

    I came across this post on Facebook and after reading the first few lines I instantly shared.
    You are an inspiration Emma, to think I felt miserable sat here editing my dissertation is laughable. Its safe to say you definitely have given me the motivation !

    Sending love and well wishes, what an amazing, brave girl you are Emma.
    Xx

    • Emma March 21, 2016 / 3:29 pm

      Hi Sophie, thank you for your lovely comment & for sharing this post as hopefully it will help create a wider awareness of invisible illnesses!

      It is funny the things we moan about isn’t it but we only have our own experience to make comparisons to so it’s understandable why we all complain about different things! It’s true you don’t know what you have until it’s taken away so I’ve learnt that there’s always something to be thankful for no matter the situation & to focus on the positive rather the negative sounds so simple but it really is the best way!

      Good luck with the rest of your dissertation! I didn’t get past the planning stage of mine before I had to leave uni so I know somewhat how tough it can seem to be haha

      Take Care! Emma xx

  4. Julia March 18, 2016 / 4:04 pm

    Hey Emma,

    This post was amazing and so brave of you to write. It’s hard, and I often find it difficult to share the personal aspects of my journey, but you’re doing the right thing by raising awareness for not only your disease but all invisible illnesses. By sharing the details- it allows people to get a better grasp of how horribly it effects your body and life. Doctors have also looked at me and told me they don’t know what to do next, and sent me back to my bed with no answers. It’s frustrating and its scary. As a 21 year old, I so understand the heartbreaking feeling of living life from your bed through flare ups. I’m so sorry that this past year or so has been so incredibly hard for you. Have you looked into any natural medicine, like seeing a naturopath or homeopath? I started seeing a homeopath for my lupus last summer and my symptoms and energy have improved. I know all disease are different but I just hope there can be some sort of alternative answer for you soon. You’re SO inspiring and I really hope you continue to share your story. Your mum is right- you will look back and be so proud of how far you’ve come. I look back at posts from when I was bedridden and barely able to walk/feed myself and it brings tears to my eyes to see my improvement. It will come for you- remember that!
    Sending you lots of spoons and positive energy,
    Jules

    • Emma Franklin March 19, 2016 / 11:23 am

      Hi Julia,

      Thank you so much for your lovely comment! It was difficult to write and more so difficult to share but hopefully it will help others in some way so it is worth it 🙂

      I’m sorry to hear you are also sick and I know there is no cure for lupus which must be difficult to deal with. I hope you have been able to find some ways to manage your symptoms somewhat and i’m really pleased homeopathy has helped you! I did try seeing and using naturopath and homeopath therapies/techniques before i was in hospital last year but unfortunately I was far too sick for them and way beyond the point of alternative medicine being able to help and have been the same way ever since then.

      This year I started going to a hospital that specialises in the symptoms of the diagnosis’ i have. The diagnosis’ ME & Fibro are just groups of symptoms they aren’t diseases with a specific cause so this hospital have done investigative tests that the public health care system aren’t equipped to do to actually try and find/pin point whats gone ‘wrong’ in my body and now i’m having biomedical treatment for the things they’ve found 🙂

      Thank you so much for your encouragement. Wishing you the best on your journey! Emma

      • Karen July 8, 2016 / 8:44 pm

        Hi, as a person diagnosed with fibro I would be very interested to know which hospital you have been to please x

  5. Anna Jones March 16, 2016 / 10:04 pm

    I have been reading this in stages this week but wanted to stop by now to send you some love and well wishes. This blog post is heartbreaking but so beautifully put together and insightful. I am cheering you on! I have shared it on Facebook and will do so on Twitter tomorrow.

    Best wishes. It is lovely to ‘meet’ you

    • Emma March 17, 2016 / 10:37 pm

      Thank you so much Anna for your lovely comment & for sharing to raise awareness of our invisible illnesses.

      I’m thoroughly enjoying seeing you progress on your journey & I hope it continues! Love Emma

  6. Trish March 12, 2016 / 5:20 pm

    Emma I am proud to say you aren’t daughter; inspirational, resourceful and a modern day warrior ! Keep on doing what you are doing and you will be rewarded in more ways than one. You have a genuine affinity with people whatever their situation you are truly blessed. I love you dearly x

    • Emma March 16, 2016 / 3:11 pm

      Aww thanks mum! XXXX

  7. Amy Saunders March 12, 2016 / 10:56 am

    This was truly inspiring and also heart breaking. I can really relate to how you feel, although I have never been as bad as you have. I have ME and last year had to leave Uni after 6 weeks to go home and rest as it was simply too much. After 10 months at home slowly recovering I returned to Uni and thankfully I am still there but I do suffer from crashes, at the moment it’s every few days. I started to write a blog with a simile intention as you – to document my progress/relapses but also to try and help others in similar situations. Reading your account has really opened my eyes and made me so grateful. Thank you so much for your honesty. Sending lots of love, Amy xxxxx

    • Emma March 12, 2016 / 12:24 pm

      Hi Amy, thank you so much for your lovely comment!

      I think in some ways despite the differences of severity – people with chronic illnesses can always relate to each other in some ways which helps us feel less isolated and alone in our situation 🙂

      I’m sorry to hear you’re sick but also so pleased to hear you’ve gone back to uni – that is such an amazing achievement i hope you’re proud of yourself and focus on that rather than the crashes because they’re unavoidable and just part of it when you have these conditions unfortunately.

      I’m so happy my blog has helped in some way! Wishing you all the best on your journey 🙂 Take Care – Emma

  8. Karen Rubins-Lawrie March 11, 2016 / 9:35 am

    Thank you for sharing your story with such honesty and openness. Although i am nowhere near this poorly, I feel I can relate so much and have shared it with my friends and family in the hope it will help them understand a little more what we are all going through. Sending you hugs, positive vibes and purrs from my kitty cat. Lots of love xx

    • Emma March 11, 2016 / 11:17 am

      Hi Karen, thank you very much for your kind message! It’s difficult to be so open and honest but I do it with a hope it will help others and then it is worth it 🙂

      I’m pleased you can feel you relate although I’m sorry to hear you are also sick – I know how much benefit we can gain from knowing others are also in our situation and that we’re not alone!

      I really hope that this post will help your friends & family understand a little more as I know it had made a difference with mine 🙂 Wishing you all the best on your journey! Take Care – Emma

  9. Jeanette Hall March 10, 2016 / 7:09 pm

    Just do what you can when you can!
    My disease (MS) gives me about 2 weeks of being able to move around our house as much as I want in my wheelchair, followed by 2 weeks of being lucky not to hurt myself creeping along using my wheelchair.
    When I make the mistake of catching the latest “bug” my husband was exposed to during his job can be down for weeks recovering. Currently am recovering from bronchitis. Breathing really is a luxury to me!

    • Emma March 11, 2016 / 11:14 am

      Hi Jeanette,

      That is a great motto! Do what you can when you can! You obviously understand the fluctuations of chronic illness & what happens to our bodies when we catch infections on top of what we already have! We are extremely lucky to be alive & breathing & i try & remember this each day 🙂

      I hope you recover from bronchitis sooner than you expect & I wish you all the best on your journey! Take Care – Emma

  10. Kate March 8, 2016 / 2:26 pm

    This is an incredible post. Thank you so much for sharing something so personal, and for making it so raw and honest. I’ve basically been housebound for the past 9 months, and a lot of that time has been bedbound, but doctors still don’t really know what is going on for me. One has suggested ME/CFS, but I’m still waiting for concrete answers. It’s hard – when you’re stuck in your bed or in your house, it feels as though you’re disappearing from the world. It’s hard to raise awareness for these types of chronic illness, because often those who are suffering the most are doing so behind closed doors and no one really knows about it. So thank you for trying to open those doors a little for people to see, and for using your very limited energy to help others. Your story is so enlightening and so relatable. It makes me feel less alone. Big hugs xxx

    • Emma Franklin March 8, 2016 / 3:45 pm

      Hi Kate,

      Thank you very much for your comment. I’m glad you enjoyed reading this post although I’m not sure if the word enjoyed is the correct word to us! I find that in order for others to understand we must communicate and be as honest as possible about out situation – give them all the facts and then it’s up to them to decide what to do with them.

      I’m so sorry you find yourself in a similar situation. Unfortunately there is no diagnostic test for ME so what usually happens is that doctors try and rule out other conditions with similar symptoms and once they are all ruled out as explanations of your symptoms – a GP usually refers us to a specialist who will then go on to diagnose ME/CFS. The ME/CFS symptoms also have to be present for at least 3 months before an ME/CFS diagnosis can be made.

      It is extremely difficult being house bound or bed bound and it does at times feel like you’re not a participant in society or the world. We have to find ways to make us not feel like this though and to stay strong as best as we can. It’s also very true that much of these illnesses goes on behind closed doors so it’s difficult to raise awareness and many of us are too sick to do that so we have to rely on friends and family to raise awareness for us. I’m just trying my best to do what I can within my limits of course! I hope if my health improves I will be able to do more to raise awareness and understanding 🙂

      I’m pleased you feel less alone after reading this and just so you know there are hundreds of thousands of people out there in the same situation as us so we are never alone. Wishing you all the best on your journey! Emma x

  11. Julie March 8, 2016 / 1:50 pm

    Your openness and honesty about living with a combination of severe and debilitating illnesses is both moving and informative. I believe what you are writing is extremely important for those of us who suffer “hidden” illnesses, our family and friends, and the wider community. It is hard for people who are well to understand the reality of living with a chronic, hidden illness. Your blog educates and allows people, to see the “hidden” part. I know writing the blog takes much needed energy but I hope you can continue. Your voice and your story needs to be heard.

    • Emma Franklin March 8, 2016 / 3:37 pm

      Hi Julie, thank you for your lovely comment. I know you understand what it is like to have ‘invisible illnesses’ so I’m sure you could relate to much of what I wrote. I try my best to continue writing as energy permits and hopefully with the next post my blog will be up to date with what’s happening now! Lots of love as always and thanks again for your continuous support x

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