Chronic Illness: 1 Year

1 year. 12 months. 365 days. 8760 hours. 525,600 minutes. 31,536,000 seconds. That’s it, if you want to get real technical about the matter but 1 year ago on this very day if my timehop will tell me quite rightly was when I was told by a medical professional that I was not going crazy but I had a neurological condition called Chronic Fatigue Syndrome and Peripheral Neuropathy. I’m a chuffer, and I LOVE nothing more than to talk about the same thing for ages- the guy that ghosted me- lets chuff kick the nuts outta that one for a couple of years shall we? So, if you want a rant about all those things I’ve learnt in the year, stay tuned for this and grab yourself a G&T or a tea whatever time you’re reading this.

‘You don’t look ill’

SHUT THE FRONT DOOR. I’ve been told this by multiple people and if you read this thinking ‘oh shite, I said that to Ev’ then yes it might be aimed at you but don’t take it personally but if the shoe does fit then my advice, just wear the bloody shoe. Nic Chapman, from the make-up duo PixiWoo was diagnosed last with MS- she looks right as rain. You’d never look or watch her content and think she had such an illness like MS. Neither would you have looked at Kylie Minogue months before she announced she had breast cancer that because she didn’t look unwell- she surely can’t be unwell. Both these women, have and had illnesses that on appearances would suggest all was well but internally paint a rather different picture. If we judge a person on a good day or even just any day, we are immediately down playing any symptom or just their illness as a whole. I accept, that there are days when I look well thus you’d think she’s fine. Chronic Fatigue Syndrome = a fluctuating illness which means it’ll differ between days, hours, minutes and months. I have good days, good months but I also have bad months, terrible days and shite periods. So, if you don’t want to annoy me or others with illnesses whether it is CFS or not, keep your mouth shut, just offer support, compassion not shallow comments. *DROP THE MIC*

We don’t want you unwell again

I AM UNWELL! Some sufferers of CFS will make a recovery and it be a short period of illness but for others it lingers around like a bad smell. In a way, it’s like the guy who regardless of your comments just seems to stick around. Your delay with communication doesn’t seem to ring anything in his small brain; CFS is the same. I’ve learnt that, *touches every piece of wood around me* in the last few months I’ve had a rather good period as a result of managing my illness well. I’ve returned to fitness and nights out without fear of relapse through managing the illness in a way that means I’m not restricting myself or over egging the pudding so to speak. I had a person say, ‘but remember, we don’t want you poorly again’. Unfortunately, my ME is here to stay (or so the doctors said) and I am ill. I hate to claim and promote myself as a victim because I’m not a victim, I’m a fighter and someone with an illness who works full time regardless of the illness. For a disclaimer,  I’m arse hole lucky that my ME is manageable and to the point that it allows me to work as well as live my life with just a few alterations. Disclaimer alert, there are many people worldwide and living in the UK who do have ME but have never let their house as a result of the illness. Not due to anxiety or fears but because their body will not allow them to move, walk or just speak. It’s there and at the moment, I can manage it, it definitely doesn’t mean that, I’m not, not poorly it in fact means that its laid dormant- it’s lurking- occasionally creeping in when I’m least expecting it but I understand and listen to my body to a point that I can control it as best as I can to try and prevent a relapse.

‘How comes you can did that but can’t do that *3weeks/months on*

Those who don’t do their research on the condition will make these comments or so I’ve found. There are some things that to some seem like nothing- for example working in London. Up to this year, I worked in London and had been since finishing my studies last year. I loved it, but once the illness became apparent it was too much. The 2 hour commute as well as the 20 minute walk each way was killing me and just asking for trouble- thus I made the conscious decision to move my work closer to home. To those without a chronic illness, they think- it’s work its life but with an illness like mine- some real mundane tasks become the longest most exhausting tasks. In my darkest hour, washing my hair and eating were exhausting. A shower used to make me feel as tired as a gym class would any other person and on my worst days still does. So, yes never assume that what seems normal or easy to you will be the same for someone with a chronic condition like ME/CFS.

 Stigma: Yuppy flu, chronic fatigue syndrome, ME

After I came to terms with my diagnosis and I wrote my first article sharing the news I began to understand the stigma. The illness unfortunately, still receives negative press much to my frustration- many still consider the illness a mental illness despite the World Health Organisation disagreeing and labelling it a neurological disease affecting the nervous/immune system. I remember telling an ex-co-worker who said, I’ve heard of that used to be described as ‘yuppy flu’ now I’m not naming, shaming her and making her apologise because that wasn’t her fault. This is society. Society, unfortunately has embedded this immediate reaction into us and we must label it. I do agree, that if I discuss my condition people are much easier to sympathise, understand and discuss the illness if it is described as ME. The minute you say the words CHRONIC. FATIGUE. SYNDROME. There are people around me, whispering ‘lazy bones’ or worse ‘she just likes her sleep’ this isn’t the case. Perhaps, CFS needs to be dropped entirely and be just labelled as ME; so docs, when next diagnosed, call it ME. Being exhausted or having fatigue is rather different to just being tired. Being tired, is sitting through a meeting wishing for the day to end so you can crawl back onto the sofa and watch a re-run of Desperate Housewives. All been there. Fatigue/Exhaustion, is when your body is on lock down forbidding you from doing normal activities and just being you. I spent weeks, months from being able to walk like I did months prior due to the pain, tiredness the illness bought with it. ME/CFS unfortunately, has a stigma in the same way that most invisible illnesses have because we are no closer to finding an answer as to how someone gets ME or how you treat it. Medical professionals are still scared and unaware of how to treat the illness best they can. I’ve found myself in positions where the GP has called my illness just the flu. FLU. Yes, it’s like flu but imagine living with the flu, jet lag and a hangover for months on end with no sign of it leaving your body.

‘BEING IN BED SOUNDS AMAZING’

Anyone who announces these words immediately goes down in my world and goes into the same bin that any guy has ghosted me has gone into. Now, although I’m lucky to not be in the severe ME category there are countless numbers of people who unfortunately fall into this category. Those with SEVERE ME, will not leave their beds. So, when someone says, ‘I’d love nothing more than to spend all day in bed’ it frustrates me because there are those in my position and are in worse positions who unfortunately cannot leave their bed. I spent 6 months essentially house/bed bound due to crippling fatigue and nerve damage- so when I have a period that means I’m back in bed as a result of exhaustion- this is not where I want to be. I want to be where I was days before, living and loving life.

This post was always going to be one that dragged itself out and this was intended. So, if you made this far congratulations go grab yourself a double G&T. Like, always, I want to say a huge thank you to those who have supported me in this last year those who have stuck by me and my new life. Without the support, I’m unsure whether this post would’ve been so sassy, or whether I’d still have that sass still in me despite the lack of energy. So, thank you xo.

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1 Comment

  1. November 18, 2018 / 9:37 pm

    Thank you so much for writing a post like this. I have a chronic illness called lymphedema – which causes permanent swelling in parts of my body – and also causes me a lot of fatigue due to a sluggish immune system. I don’t look ill, no one would really notice, but I really feel awful for what could be weeks on end.

    Thanks for highlighting these things, hopefully someone who reads will understand that chronic illnesses are tough to live with – but the people that live with them are also tough.

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