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Awareness, chronic illness, Friday Feelings, Guest Posts, health, spoonies

Friday Feelings- Living with ME

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Hey there, hi there, ho there!

This week I spoke to Amy from Living with ME. Amy is a university student studying English and Linguistics. Amy suffers from Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS). You can find Amy on Twitter, Facebook, Instagram and Pinterest.

Amy

Hello! I’m Amy Saunders and I have a blog called Living with ME which is basically a lifestyle blog, focusing on chronic illness. I have ME/CFS, (chronic fatigue syndrome) and potentially an underactive thyroid as well. I am a student at university, studying English Language and Linguistics, and in my spare time (when I’m not sleeping/resting!) I love reading, singing, and writing!

So now we know a little about Amy, let’s have a read of her Friday Feelings entry

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“Dear Diary

For the past few weeks, my Friday night has been spent being in bed by 8pm, with a hot water bottle and a big soaps catch up. Usually after a busy week, I am ready to collapse and I use my Friday nights to rest and unwind from a chaotic week, and I usually love doing that. It’s time that I get to myself to do what I want to do, whether that be watching my favourite TV show, doing some blogging, or just reading a book. Occasionally, if I’ve had a quieter week, I might go out for a few drinks with friends, or a meal, but on the whole, I’m usually in bed, and that’s just the way I like it.

I’m currently recovering from a bit of a flare up from my illness which hit me in March, along with a side of anxiety and a bit of depression, so time to myself is so special to me, and so important for my health.

I am comfortable enough with my illness to know my limits, but whenever a flare up arrives, it is bound to hit you hard, no matter how bad the flare is.

March was a bad month, and that’s never going to change, but what is important is that I persevered and I got through it. It’s now time for me to reflect and look back at it and work out if there was a trigger, something that caused it, so I can learn from it and prepare for the future.

I don’t know what’s going to happen in the future. Will I get better? Will I get worse? Or will I just stay the same?

I have all these big life decisions that I have to start making over the next year or so, and to be quite honest, I don’t have a clue what I’m going to do.

It’s hard to try and explain this to people. I’m at university, so naturally people are always asking me what I want to do once I’ve finished. My gut tells me to be honest and say ‘I don’t know’, but my head tells me to lie and say ‘Oh I want to be a teacher’. I mean, that is the truth isn’t it? I do want to be a teacher. I know it’s not realistic and it most likely won’t happen, but it is the truth, right?

I don’t expect anyone to understand what it feels like to live with a chronic illness at 21 years old, but it would be nice from them to try.

But for now, I live for the present moment. I try not to think about the future, and the big decisions that I’m going to have to face soon. I’m very grateful for the life that I have, and for the family and friends, and wonderful boyfriend that I have. That is what is important, and that is enough for me.”

A big thank you to Amy for taking part in our Friday Feelings blog.

I really hope that she will be able to achieve her dream of becoming a teacher. I can totally relate to her story. How about you? Do you relate to Amy’s diary entry? Have you any advice for her about making big decisions while dealing with a chronic illness? Let us know in the comments.

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

Sunday’s blog will be published tomorrow as we are heading to London for treatment on Sunday.

Until then,

Z.M

x

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Awareness, chronic pain, Friday Feelings, Guest Posts, health, Rare Diseases, spoonies

Friday Feelings with A Chronic Voice

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Hey there, hi there, ho there!

Sorry we are late to the party this week. I’ll explain in my post tomorrow why I am late.

Anyway, this week I spoke to Sheryl from A Chronic Voice. Sheryl suffers from antiphospholipid syndrome (a blood clotting disorder), Lupus (SLE), Sjögren’s Syndrome, Epilepsy, PSVT (a heart rhythm disorder), a repaired mitral valve, osteoporosis from long term steroids, and couple more illnesses. You can find Sheryl on Facebook, Twitter and Instagram.

My name is Sheryl and I’m from Singapore, a sunny island in Southeast Asia. Writing and travelling are my two biggest passions in life (I know, cliché, but it’s true ;)). Other hobbies I’ve been dabbling with of late include flower arrangement and learning French.

I used to work in an ad agency as a frontend web developer, but had to quit as the stress was literally killing me (needed blood transfusions). I am still trying to find ways to balance my health while earning a living. I feel very fortunate to have such supportive loved ones.

I blog over at A Chronic Voice and Journey Jot (albeit much neglected). I am trying to find ways to merge the two 🙂

So now that we know a little about Sheryl, let’s look at her Friday Feelings entry.

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“Dear Diary,

It’s Friday and most people are out partying the night away. I am perfectly content that I’m at home, having a normal home-cooked meal or pizza with my partner, watching a movie. Sometimes we go for a spontaneous walk or outing. We do make an effort to dress up and go out once a month however, either for a dinner date, or to meet some new people. I feel that this is important even though I’d rather stay in, because I do not want to lose touch with the world. It’s so easy to become trapped in our own without even realising it, which creates tunnel visions and narrow minds.

Right now, I’m not in that much pain, so I’m all chummy with it. I think to myself, ‘oh, there’s plenty I can learn from pain.’ I’ll probably change my stance when it comes back with a sadistic grin…which should be soon as I have a surgery scheduled on Monday 😉

There is no future with chronic illness. To clarify, I don’t even know what’s up for tomorrow. I will have a rough idea only when I open my eyes in the morning. There is an underlying worry, for sure. I think to myself, ‘I am already so weak physically and unstable financially now. What more in 20 years time, when we all become naturally less resilient?’

Then again, I don’t feel as miserable as I used to anymore. I have come to realise that it is ridiculous to compare myself to the rest of society. Put it this way – if chronic illness and being in pain was the norm, how would the average person behave? From that perspective, I think I’m doing okay. My loved ones always say to me, ‘take it one day at a time, that’s all you can do’. And I think it’s getting drilled into my head pretty good.

Since I’ve become active on Facebook with my blog (I never really posted much before that), I think people have become more sensitive when they are around me. This is both a good and bad thing. While they are more compassionate, there is also a vibe of walking on eggshells, which I don’t like.

Strangers on the other hand are quick to judge anything invisible; I do that myself. But surprisingly, there are those with chronic illnesses who judge you harsher than society. Almost as if they have become so bitter and so engrossed with their illness, that they claim ‘ownership’ over it. And that’s risky behaviour which I hope I never sink too deeply into.

Thank you for taking the time to read my diary entry, and wishing you a fabulous week ahead!”

A big thank you to Sheryl for taking part in Friday Feelings despite having to prep for surgery tomorrow!

Can you relate to Sheryl’s entry? Do you find people walk around on eggshells around you or have you noticed competitiveness in chronic illness circles? You can comment below and let us know your thoughts. You can also follow Sheryl on Pinterest and Google+

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

So until tomorrow,

Z.M

x

 

Awareness, chronic illness, Friday Feelings, Guest Posts, health, spoonies

Friday Feelings with Ecofluffy Mama

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Hey there, hi there, ho there!

It’s Friday and you know what that means? It’s our first Friday Feeling entry! I had this idea after my interview with A Southern Celiac, writing down my thoughts about certain aspects of my illness was therapeutic in a way. So I thought why not give other chronically ill people an opportunity to get things off their chests. Writing things down can help us work through our feelings and I hope that other chronic illness sufferers will comment in support or offer some advice for each of the entries we will have for the next few months. Why Friday? Because Friday is the beginning of the weekend. Some of us may be well enough to go out and socialise with friends but for so many of us that life of going out on a Friday night to a bar or a club is long gone. The weekend for normal people is an opportunity to let off some steam but for the chronically ill it means having more help at home and grieving for the lives they once had, looking at selfies of friends on their great night out on the tiles.

So, this week I spoke to Tamsin aka Ecofluffy Mama. Tamsin suffers from multiple chronic conditions including Pancreatic Agenisis. You can find Tamsin on Facebook, Instagram and Twitter. You might already know the EcoFluffy Mama but if not, let’s get to know her a little better before we begin:

Hello there, my name is Tamsin! My blog is a Green Living Blog and I mostly write about reusable/eco friendly products.

I live in the countryside (in the UK) with my Fiance and small boy. I’m 29 years old, but still a big kid a heart. In my spare time I enjoy going for walks with my family and watching Stargate SG1. I love to spend hours in books shops. My hobbies include photography, crochet and soap making.

As you’ve already guessed, I’m extremely passionate about ditching disposable items and a huge advocate for Reusable Menstrual Products. My aim is to spread the word and educate everyone on the importance of: Reusable Products and living a Green Lifestyle.

So now we know a little a bit about the Ecofluffy Mama, let’s have a look at her entry for our first ever Friday Feeling.

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“Dear Diary,

It’s Friday night and I’m feeling really quite down. Many people look forward to Friday because it’s the end of the week. They get to switch off, go out for a few drinks and unwind with their friends. Not me, though. There’s nothing special about my my Friday night. Not unless you count the fact I am relieved my partner has finished work for the week, so I now have him home to help support me.

Right now I feel really down about how my health is. I guess I always expected things to improve after my sudden decline in 2014. I remember constantly getting back up after admissions, trying to work out again and be ‘normal’. But it just never happened and I feel really sad about that. I looked back at a post the other day where I said I wasn’t going to let my illnesses define or rule my life. And yet, they have. I feel so helpless and alone, even though my fiance and son are always there.

I’m trying to keep my chin up for what the future might bring. My Doctor is amazing and he’s helped me so much already. But I do worry that we’ll get to the stage where yet again, we meet a roadblock. I should be thankful really. He’s done so much for me in the past year than my other teams elsewhere did for me in two years.

I’ve noticed people treat me differently, and it’s gotten worse. At the start everyone was so kind and supportive to me. One of my close friends supported me so much, including looking after J when I was in hospital. Didn’t take long before she binned me, always making excuses for not seeing me. Am I really that much of a burden? Some have said to me that I shouldn’t feel bad, that those people were never my friends. But I am starting to wonder if that’s true, or if it’s because they find me too much work with accomodating my needs? Some people look at me and question the authenticity of being ill, because I look okay. Well, to a degree. Not sure how yellow eyes looks okay but clearly that doesn’t matter to them.

Friends on Facebook always used to message or comment when they saw I was in hospital. But, not anymore. It’s almost like they’re bored? Perhaps they only bothered at first because they wanted all of the ‘gossip’ on what was going on. It really does hurt my heart.

My illnesses have isolated me so much. I’d love to be out tonight, socialising with my friends. But instead I’m in bed taking my cocktail of pills before turning the lights out.”

A big thank you to Tamsin for being the first participant of Friday Feelings. Always lovely to connect with other like minded moms.

Have you any words of kindness or wisdom for Ecofluffy Mama? I’m sure most of us can relate to the issue with losing friends to our illnesses. Send her some love in the comments below ❤ You can also follow Tamsin on Pinterest and YouTube.

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar

The usual Sunday post will be up as per usual!

So till then,

Z.M

x