My Life with Chronic Illness

Hi my name is Emma and this blog is where I share my experiences of living with chronic illness to make my invisible visible (Hypermobile Ehlers Danlos Syndrome, Fibromyalgia, Mast Cell Activation Syndrome, Dysautonomia & Chronic Fatigue and Anxiety)

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a red light lights up on your car's dashboard and underneath the light it says CAR

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Why is this so true?

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Having a chronic illness is like starting the day on 10 spoons and using them by by 12pm and realising you still have stuff you need to do - one more day in negative spoons 🥄

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Started a low histamine diet today to get my MCAS under control. This year I am not setting any crazy resolutions that I will do for 3 days, break them spectacularly and then spend most of the year beating myself up about it (anxiety sucks). Instead I’m just trying to be consistent and focus on trying to get some of my symptoms to a more manageable level and being kind to myself. One step at a time…

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Just been diagnosed with mast cell activation syndrome or MCAS finally. It’s been years of gaslighting and cancelled appointments and to finally have someone listen to you really helps. If any of you amazing people have MCAS please do send me a message I’m starting out on this journey really to try and take back what these conditions have taken from me and I could really use some help or accountability to stick to these changes - I look forward to hearing from you.

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Ever had the ‘you don’t look sick’ interaction? You know the one where you want to say back ‘yeah okay but you don’t look stupid but here we are’ that takes place in your head when people say that (don’t say it doesn’t we’ve all been there). I’ve always wondered are they saying that because they mean well, they are trying to gaslight or they are just ignorant?

I think the take home is kindness costs nothing and everyone is dealing with something, chronic illness or not - and these conversations albeit annoying and frustrating raise awareness and that’s the most important thing.

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Having a chronic illness is like a full time job - but one where you don’t get paid, it can’t sack you and you can’t leave.

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Dear healthy/abled people: Chronic illness and disability SHOULD make you uncomfortable. But instead of turning from that discomfort and shutting off your empathy, face it. Face us. Because we're not rare, we're not just some small percentage of humanity. Disability IS humanity.

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This is everything!

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Ehlers Danlos Syndrome is a stupid name for an illness... fellow zebras let’s see if we can come up with a better name! The more humourous the better!

I’m going with Jelly disease!

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Ever had to have tests for the sake of having tests?

I had a hip x-ray the other week and today I was told the x-ray was ‘fine’ but when I saw the x-ray there was clearly damage to the hip ball joint. So if a layman can see damage with their limited knowledge. What is the point of having a specialist look at it if they can’t see there is obvious damage. I don’t know about you but having a test just to be told it’s fine... and no context whatsoever seems pretty pointless to me. I am requesting a copy of the x-ray and the MRI so I can get a second opinion. It’s bad that I have to do that. Is it because these specialists either a) don’t have time or b) don’t actually care? Or c) all of the above.

I’m sure they care in some way or they wouldn’t be in their profession. I fear I have another battle brewing. I hope I’m wrong!

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Do you have any tips on how to deal with people who are insensitive to your illness/disability? I was speaking to some friends today about the accommodations I was finally able to receive at school and one commented on how I was lucky that I could slack off or be lazy and not get penalized for it 😕 i was shocked that she said that but it isn’t the first time. I usually just stay quiet after that because I don’t know how to respond

Thank you for your question. It’s hard to deal with this right? The first time I got a walking aid I got the strangest looks. You know I think education is important and if they are willing to listen or not it’s important for you to have shared something about what it’s like. You may not help them understand it then but overtime they should be more understanding.This is a tough one but most people are insensitive to disabilities because a) ignorance or b) sadly jealousy. I don’t know about you but being jealous of a disability is pretty twisted. But innocently your friend may not be looking at the disability aspect they may just see the necessary adjustments you have had and want them for themselves. It really depends on a persons motive in how they indirectly discriminate. They may not have realised they are doing it. It’s also important for you to respond when it may not be so raw because you could say something you regret or you could cause yourself stress that could trigger a flare up. It isn’t worth it.I hope the above is helpful. 💜 and 🥄’a

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You know you have chronic pain when you own a tens unit ... in any other context I wouldn’t seek to purposely give myself an electric shock - but apparently this ‘helps’ so I shall suffer for the sake of curiosity - I’ve not had it on my knee before... you never know the electric shock pain might just take the original pain away... I’m not sure replacing new pain for the original pain is considered a treatment but hey I’ll try anything of it works!

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Called the hospital today to find out when the letter will be done recommending treatment... it’s going to take another 3 weeks before a letter is sent before I can even be referred for treatment... having a chronic illness either teaches us patience or drives us crazy in all the time waiting... sometimes it’s a little bit of both.

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So just finished with Stanmore. I had a hip X-ray and I have some damage on my left hip - not sure what that means yet waiting for the official results... I need another MRI (full spine), more blood work and more appointments - the fun never stops with Ehlers Danlos Syndrome.

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Me: *Gets out of the car*

Also Me: *cant walk, my pelvis has locked*

Mum: Are you alright?

Me: I will be - when it loosens! Right now that wheelchair is looking pretty good!

I knew today was going to be ‘fun’ start as we mean to go on. We only got to the coffee stop.

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Fatigue with a chronic illness:

Wake up - I don’t want to get out of bed!

Midday - I need a nap!

Time to actually go to bed - I can’t sleep!

And repeat!

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Off to Stanmore in the morning... 7am start... that is way too early!

That’s me asleep in the car by 8 am then...