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chronic illness, chronic pain, Ehlers Danlos Syndrome, Friday Feelings, Guest Posts, health, Rare Diseases, spoonies

Friday Feelings with My EDS Journey

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Hey there, hi there, ho there!

This week I spoke to Emma from My EDS Journey. For a number of years Emma worked for a local charity helping people with disabilities but she has had to cut the number of hours that she can work dramatically as her condition, Ehlers Danlos Syndrome, has become unstable.

You can find Emma on Twitter, Facebook and Pinterest.

Miss clicky

“Hi everyone, my name is Emma I am 40 and I live in a very nice area of the south east of England. I suffer from hypermobile Ehlers Danlos Syndrome (hEDS).  This affects me in a number of ways, but mainly mobility, gastric, autonomic and pain are my problem areas.

My biggest passion is singing and I absolutely love musical theatre but unfortunately at the moment due to my current condition singing lessons and theatre visits are on hold! I took up blogging about 6 months ago as an outlet to communicate with others in a similar position to me and so we can share our knowledge and experiences living with a chronic condition. You can find my blog at http://edsjour.blogspot.com/edsjour.blogspot.com

Now that we know a little a about Emma, let’s look at her Friday Feelings entry:

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Dear Diary,

Today is Friday, with most people I expect looking forward to a busy and varied weekend and perhaps socialising or spending time with friends and family.  For me however, this evening will be the same as any other, curled up watching TV or listening to music while trying to get comfortable.

My energy levels are currently very low and I am going through a bad period with my EDS, I wonder what my next problem will be as something new is always cropping up!

I like to take each day as it comes and not think too far ahead as my health is unpredictable and thinking about the future is scary and uncertain.

Due to the nature of EDS and it mainly being invisible to others, a lot of people don’t understand how it affects us, they may say “you are looking better today” or “ you need to keep up your exercises” as though these words are a magical cure.

I only wish they could see what is going on in the inside and then they would understand the phrase “make our invisible visible”.

A big thank you to Emma for taking part in Friday Feelings and being so open with us. Can you relate to Emma and her feelings of uncertainty about the future? Let us know in the comments below!

Want to write your own Friday Feelings entry?

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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 hello@thezebramom.com

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

Until Sunday,

 

Z.M

 

x

 

 

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Awareness, chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, Friday Feelings, Guest Posts, health, Rare Diseases, spoonies

Friday Feelings with Zebra Writes

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Hey there, hi there, ho there!

This week I spoke to Sara from zebrawrites.com. In a previous life, Sara worked as a school psychologist and now she works part-time as a behavioural therapist. Sara writes about her experiences on her blog.

Sara’s primary diagnosis is Hypermobile Ehlers-Danlos Syndrome (hEDS). You can find Sara on Facebook and Twitter.

Sara

 

Now that we know a little about Sara, let’s have a look at her Friday Feelings entry:

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“Dear Diary

Fridays are hard for me because I am very tired by the end of the week, especially if I have been working. I most often spend Friday evenings at home, enjoying the company of my pets and my husband. I prefer to meet up with friends on a Saturday or Sunday during the daytime, in a quiet place. My intractable migraine make me extremely sensitive to light, noise, and smell – so I have basically given up on attending parties or visiting bars during prime hours. When I’m feeling particularly well I do enjoy playing trivia with friends at a local bar on a weeknight (when it is quieter).

At this moment I feel both hopeful and frustrated. I am still young, and there is so much that I want to do with my life.

I want to be a mother in the future, and I hope that I will have the energy to be a good one – but I know that sometimes I will fall short of my expectations for myself – in this and other endeavors because of the limitations that my illness imposes on me. I have hope that new medications that are on the horizon may be able to control my daily migraine pain, but also am tired of waiting. I worry that my body will continue deteriorate. In the meantime I’m learning to sit with the pain and be as functional as possible while enduring it. I’m doing my best to strengthen my body with physical therapy. I hope that it will be enough.

I think that people have difficulty understanding chronic illness unless they have experienced it for themselves. It is hard to understand the fluctuating nature of our pain and level disability or ability on any given day. I also think it’s difficult for people to understand a condition for which there is no cure or finite ending.

EDS is not (likely) going to kill me, but it’s also never going to go away. It is a part of who I am. When confronted with this fact, most people want to “fix” it, or come up with a solution.

They might offer unsolicited advice, or suggest you’re not taking care of yourself well enough in order to ease the discomfort our condition makes them feel. I know that they mean well, they really do. So if you are a person with a chronic illness I challenge you to educate others about your life, and what it is really like. If you are a person who knows someone with a chronic illness, I challenge you to quit trying to “fix” it for them, and ask them about their experiences and true feelings.”

Thanks to Sara for taking part in our Friday Feelings blog. Can you relate to Sara’s story? Do you get unsolicited advice? How do you deal with it? Let us know in the comments below!

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.

Until Sunday,

Z.M

x

 

 

 

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

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

Friday Feelings with Xo, Faith

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Hey there, hi there, ho there!

This week I spoke to Danielle from Xo, Faith. Danielle is SEO Manager and Freelance writer. She suffers from Sphincter of Oddi Dysfunction, this rare disorder can cause chronic pancreatitis. You can find Danielle on Twitter, Facebook and Instagram.

Danielle

“Yesterday is history; tomorrow is a mystery, and today is a gift, that is why it is called the present,” is my favorite quote of all time.

My name is Danielle Faith, and I run a peer to peer support magazine that aims to help those struggling with chronic pain, chronic illness, substance abuse and mental illness.

Being ill has been my inspiration to build and start my website. I make a huge point to note that my illness does not define me. I am a daughter, friend, blogger, social butterfly, dog lover, hard worker, college graduate, and so much more than my illness.

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

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“Dear Diary,

While most people my age might grab drinks and dinner after work on Friday night, chances are I’m curled up under some warm blankets and heating pads that night watching the nightly news and browsing the internet. It doesn’t bother me; I enjoy what I do on Friday evening. It’s a nice way to unwind without worrying about my body or having to put myself under the microscope and go out.

“I’ve become comfortable with my illness. I know it well.”

I know when I can handle it at home, I need more medication and most importantly, I know when I need to go down to the dreaded emergency room. Currently, I’m averaging a monthly hospital visit and every three months I require a hospitalization. As bad as that sounds, it’s hard to imagine it once was a lot worse. It used to be that I was going weekly to the Emergency Room with hospitalisations every month.

As I progress, I have hopes and dreams. I want to go to school to study psychology, and I want to keep working on decreasing my hospital visits. I have a lot of supportive friends and family, and I want to find ways to give back to them to show them, that they’re important to me too.

I am fortunate that my friends and family view my illness in a positive manner. I can always rely on my family and friends to do right by me and for me that says a lot.

Today, I just want to live in the moment and not worry about the past or future.

I try hard to do this as much as possible. I’m in a ton of pain a lot of the time, but my friends, family, and dog, make it all better.”

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

I really enjoyed reading her diary entry and seeing her so positive. How about you? Do you relate to Danielle or feel inspired by her post? 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.

Until Sunday,

Z.M

x

Awareness, chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, family, Friday Feelings, health, spoonies

Friday Feelings with The Zebra Mom

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Hey there, hi there, ho there,

This week I didn’t have any guest post submitted so, I decided to do a Friday Feelings post myself.

Usually I explain what my guests suffer from and a they tell us a little about themselves but I’m sure anyone who follows my blog is well aware of my conditions and the things I am passionate about. I will take the oppurtunity to plug my social medias though :p You can find me on Facebook, Twitter, Pinterest, Instagram and Snapchat (see the snap code in the header)

evie blog

So we will just dive straight into this week’s Friday Feelings post

 

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“Dear Diary,

It’s Friday and for once, I’ve had an excellent night’s sleep and I’m feeling relatively OK. Usually I wake with something wrong but luckily, I have no more pain that the usual aches. I am so happy that I’m feeling well as can be since I am celebrating my 30th birthday tonight with family and friends. It is not often I get to socialise and get dressed up so when it does happen I appreciate it so much. I’ll probably run low on spoons after I finish getting myself ready but I am hoping the adrenaline will kick in and help me enjoy my night. I also have to be weary of certain lighting in pubs as my sensory issues can cause havoc when I do get the chance to go out. My typical Friday nights are usually much more boring. I sit at home and spend my time watching the Gilmore Girls or socialise on Facebook.

Even though I feel OK right now the last few weeks my EDS and Dysautonomia has been acting up a good bit forcing me to use my wheelchair. I hate using it, it makes me feel very self-conscious but I know I would be much worse off if I didn’t use it. Yesterday we went into the city to take our little boy shopping for new party clothes and if I didn’t have my chair, I wouldn’t have been able to enjoy our time. It’s a frustrating time for us at the moment as we are currently fundraising to get back to London for treatment. This 5-night trip is costing us 5,000 Euro. Luckily I have some really good friends and family who helped us raise 765 Euro a couple of days ago at our coffee morning. We couldn’t believe that that amount was raised in just a couple of hours! The community really came together to support us. I was truly blown away.

The future is uncertain but I am hopeful that getting treatment in London will give the children and me a fighting chance at some normality. I am having Autonomic tests in London to find out exactly which type of Dysautonomia I have. Here in Ireland I have been diagnosed with Orthostatic Intolerance and Vasovagal Syncope but the experts in London believe I have Postural Orthostatic Tachycardia Syndrome (PoTS). They believe Alexander also has PoTS but luckily he isn’t greatly affected. I also see symptoms in Olivia too.

I think as time goes on, people are understanding our conditions better and know that they are invisible illnesses and that some days I need my wheelchair and some days I don’t. I think the fact that we have had to go to the UK and fundraise thousands made people realise the severity of our conditions. It’s a shame that it has had to come down to this but I am content that those nearest and dearest to us take things seriously. I have had negative experiences with the way people has viewed EDS before. One doctor said that people with EDS didn’t suffer from chronic pain (I know, I know) and that I more likely had Fibromyalgia. Now, many experts do believe that most people diagnosed with Fibro have actually been misdiagnosed and that they actually have some form of Connective Tissue Disorder. I told her this and she was most unimpressed to be challenged. Pregnant and wheelchair bound, I left that appointment in tears in pure anger and frustration. A Rheumatologist diagnosed me with hEDS at that point but I saw another one to confirm the diagnosis because I felt the private consultant’s diagnosis wasn’t being taken seriously. I had the diagnosis confirmed by two experts in London so I am pretty confident hEDS is the right fit but I am going to have genetic testing just to be sure as I do fit a couple of the types of EDS too. I think anyone diagnosed with hEDS should have genetic testing to rule out other types and other Connective Tissue Disorders. If the tests come back clear, I’ll be happy sticking with the hEDS diagnosis.

Anyway, better start getting ready for my hair appointment and party. Wish me luck that my EDS or Dysautonomia doesn’t kick off!”

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.

Till Sunday,

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