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

Friday Feelings with The Zebra Mom

March 24, 2017 thezebramom 1 Comment

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)

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

“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 30^th 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

Awareness, chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, Guest Posts, spoonies

My Guide to Dysautonomia featured on Irish Dysautonomia Awareness

March 12, 2017 thezebramom 3 Comments

Hey, there, hi there, ho there!

This week I guest blogged on Irish Dysautonomia Awareness with my Guide to Dysautonomia. Go check it out!

I’m putting together an e-book of all my guides of conditions relating to invisible illnesses. Want you illness included? Comment below!

Until friday,

Z.M

x

Irish Dysautonomia Awareness

I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.

evie blog

I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple…

View original post 1,780 more words

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

Friday Feelings with Irish Dysautonomia Awareness

March 11, 2017 thezebramom 1 Comment

Hey there, hi there, ho there!

This week I spoke to Lette from Irish Dysautonomia Awareness. Lette suffers from Hypermobile Ehlers Danlos Syndrome (hEDS) , Postural Orthostatic Tachycardia Syndrome (POTS) , Sphincter of Oddi Dysfunction (SOD), Neurogenic Bladder Dysfunction and Gut Dysmotility, to name but a few of her conditions. You can find Lette on Twitter, Facebook and Instagram.

Hi I’m Lette. When I’m am able for it I love to play retro video games, photography, drawing, craft, listen to music. I like to internet hop and watch shows like Game of Thrones, The Walking Dead, The Expanse and Black Sails with my wonderful husband and our little dog Boo.

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

“Dear Diary…

It’s another Friday, they have begun to all feel the same these days, days melting into weeks, melting into months that float by me at high speed and I still seem to be stuck here in my bed, in a dark room, feeling putrid!

Motivation seems to have upped and all but disappeared. I think of all the things I have achieved throughout my life before I got very sick and everything went downhill in 2011. I got my art degree, my Masters of science, worked as a fitness instructor, (can you imagine?) as a wedding and events photographer and videographer, as a teacher in adult education and as a lecturer in third level. That was just education and work, when I had the proper use of my legs and body, my husband and I used to just love going hiking through the wild woods and lakes of Killarney with the dog and cameras in toe, I loved to drive and cycle and swim and walk aimlessly through fields for hours with the camera just because I could and I felt immense joy in looking back at and sometimes editing the photos and the memories I had captured while out.

I used to love drawing, animals especially and now it has been so long since I lost myself in any art. I forget what it’s like and I miss it but the energy is never there in recent times for me to act on that longing.

I don’t do any of these things anymore, I find I am spending more and more time in bed as I am just not capable, the majority of the time, of being upright. Either I am in severe pain with my gut issues or severe pain in my hips and shoulder joints, or the worst pain at the moment is coming from the back of my head / base of my skull / top of my neck pain which causes white blinding headaches where I can do nothing but lie in a dark room and moan. No phone, no laptop, no reading, no entertainment. Just darkness and constant pain and nausea or POTS issues where my blood pressure is so low I can hardly turn over in the bed. It wears you down.

The only time I get out these days is not to visit friends or family like I used to regularly do, but instead to go to hospital and consultant appointments and even then I have to reschedule many because I am too ill to go!

I’m getting gloomy but I don’t mean to be, because something different happened yesterday. I had to update the house insurance! What? Bear with me! Honestly, it gave me a sense of purpose, for all of those 15 or so minutes I had something, relatively important, to do and it felt good!

This morning I helped make the breakfast with the husband, put laundry washing on, picked up the Nintendo DS for the first time in ages and played Earthbound and I even had a shower. This may sound utterly silly, but to me, these are huge achievements! The shower is a funny one, I actually have to way up my energy for the day against the effort of a shower and believe me, I may not have the energy for days. It can get a tad funkay in fairness!

So while many friends of mine will be going out on the town later tonight or this weekend and I know a few others who are jetting off on a few days holidays in Europe, all I can achieve is having a freshly washed dressing gown, a nice shower, fresh fluffy socks and a hot cup of tea! Where once I would have drowned my sorrows in that cup of tea, tonight I am smiling because I know its ‘the little things’ that should and do count the most.

I have so much to be happy for. My wonderful husband, our amazing dog, my loving family and friends, the generosity of strangers who have helped with my medical fund, a relatively successful blog and related social media links, my talents have gotten rusty but I can get them back if I just try even one new thing every day.

Anyone can achieve anything if they just try and thats alright with me!”

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

Do you relate to Lette’s entry? Do you find joy in achieving what most people would take for granted in being able to do? Comment below and let us know what you thought of Lette’s entry.

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:

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

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

So until Sunday

Z.M

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

Friday Feelings with Living With POTS

March 3, 2017 thezebramom Leave a comment

Hey there, hi there, ho there!

This week I spoke to Caroline from Living with PoTS . Caroline suffers from Postural Orthostatic Tachycardia Syndrome (PoTS). PoTS is a debilitating type of Dysautonomia and is often found in people with Ehlers Danlos Syndrome. You can find Caroline on Twitter.

I’m Caroline, I’m a final year Uni student in Yorkshire, studying Psychology and Education. I love reading, especially Harry Potter, baking and crafting, and my dream is to live abroad and work with disadvantaged children.
I’m relatively new to both the chronic illness and blogging communities, having suffered with PoTS like symptoms all my life, but only just figuring out what it is. I’ve been amazed by how supportive everyone is.

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

“Dear diary,

Friday night again, well 4pm. I’m in bed, exhausted from the week. Tonight is worse than most, Friday is food shop day, and dragging a week’s worth of stuff back on the bus means the pain is worse than usual. Later my flatmates will be going out, I’ll be lying in bed trying to sleep, constantly being woken up by them. Eventually I’ll probably give up and turn my laptop on. If it’s been a bad week, I’ll stick a DVD on, if it’s been a better week I might try get through some of the mountain of work I’ve been avoiding.

Right now I’m still getting used to my chronic illness. I’ve been suffering for years, but always just assumed I was lazy, or hadn’t eaten enough, or a million and one other excuses. Although having a reason is a relief, it’s scary. It’s here to stay and I need to learn to live with it. I’m sure one day I’ll know where I stand with it, I’ll have a diagnosis and a symptom management plan, and I’ll feel more in control, but that day is not yet.

The future is overwhelming. In July I’ll graduate, and have to enter the real world. I’ve always known what I wanted to do, I never even considered that I might be too ill to do it. So right now it’s back to the drawing board, desperately searching for a job I can do, without having to move away from the doctors I’ve only just met, who will be supportive of my illness. My degree has 3 contact hours a week, so I have no idea how I’ll cope with work, I don’t even know how I’ll cope making tea tonight, or having a shower. Long term planning is nothing short of impossible.

I wish people would stop telling me to be positive. I am positive. I’m also realistic. When I say this illness isn’t going away, it’s not. That’s a chronic condition. When I say it limits what I can do, it does. That doesn’t mean I’m not ambitious. I will find a job and a life that I love, it just won’t be what I was planning, but that’s okay. My condition is part of me, it does not define me.”

A big thank you to Caroline for reaching out to take part in our Friday Feelings blog.

Do you relate to Caroline’s entry? Do you constantly hear that you should be more positive from those around you? How do you deal with it? Comment below to offer some advice to this new Spoonie.

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:

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

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

So until Sunday (I know, I know I said I’d have it up during the week),

Z.M

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

Friday Feelings with A Chronic Voice

February 26, 2017 thezebramom 3 Comments

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.

“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:

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

Awareness, chronic illness, chronic pain, Ehlers Danlos Syndrome, health, Rare Diseases, spoonies

Dear Minister Harris- aren’t you forgetting someone?

February 18, 2017 thezebramom 5 Comments

In 2016 the Dáil has passed a bill to make cannabis available in Ireland for medicinal use, after the Government said it would not oppose the legislation. People Before Profit TD Gino Kenny, the bill seeks to legalise and regulate cannabis products, which are used for medical purposes. Mr Kenny said his bill intended to make cannabis available to those with chronic pain, epilepsy, cancer, MS, Fibromyalgia and, under a doctor’s recommendation, would help to alleviate symptoms of illness.

Minister for Health, Simon Harris said that although he has concerns about some elements of the bill, he will not oppose its progression to Committee Stage. Mr Harris asked the Health Products Regulatory Authority (HPRA) to advise him on the scientific and clinical value of cannabis as a medicine. He said he wants to receive that advice from the agency before progressing the legislation any further.

The Minister also indicated that amendments would have to be made to the proposed bill to avoid the unintended effect of making cannabis legal for recreational use.

Minister Harris said he strongly believes that Ireland needs to take a look at policy in relation to medicinal cannabis, saying a number of countries have already taken the steps to make it available. He said he has met a number of patients and patient groups over the last few months who have highlighted their belief that it could relieve pain.

After the HPRA released their report, Mr Harris then released a statement about how things will most likely go ahead in regards to the use of Medical Cannabis. Check out this extract:

“The report stated that patients accessing cannabis through the programme should be under the care of a medical consultant
Medicinal cannabis will be made available to patients in the Republic of Ireland with certain types conditions. I’ve asked my officials now to outline to me how quickly I can put a compassionate access programme in place.
The minister thanked the Health Products Regulatory Authority (HPRA) and the members of the Expert Review Group for their work on the report which he described as a “milestone” in the development of policy on medicinal cannabis.

“This report marks a significant milestone in developing policy in this area. This is something I am eager to progress but I am also obligated to proceed on the basis of the best clinical advice. The report notes that this is ultimately a societal and policy decision and I have decided to proceed with the advice of the HPRA and establish an access programme for cannabis-based treatments for certain conditions, where patients have not responded to other treatments and there is some evidence that cannabis may be effective,” Mr Harris said.

The HPRA report advised that, if a policy decision is taken to permit cannabis under an access programme, it should be for the treatment of patients with:

Spasticity associated with multiple sclerosis resistant to all standard therapies and interventions whilst under expert medical supervision.
Intractable nausea and vomiting associated with chemotherapy, despite the use of standard anti-emetic regimes whilst under expert medical supervision.
Severe, refractory (treatment-resistant) epilepsy that has failed to respond to standard anticonvulsant medications whilst under expert medical supervision.

Now, I am delighted that those suffering from the conditions mentioned above will get relief by using Cannabis but, I have a very big concern. What about those of us with chronic pain? What happened that we have become excluded from the list?

In his letter published on chronicpain.ie, Professor David P. Finn, PhD states:

“We now know from thousands of peer-reviewed scientific publications that the endocannabinoid system plays a key role in regulating physiological processes including pain, stress/anxiety, appetite, learning, memory and cell development.

Multiple laboratory and clinical studies support the effectiveness of cannabinoids for the treatment of a wide range of disorders, including chronic pain, multiple sclerosis, epilepsy and others. Further randomised, double-blind controlled clinical trials looking at larger patient numbers and over longer time frames would certainly be welcome.

Evidence to date suggests that the adverse side-effects of cannabinoids used in a clinical context are mostly mild, and not overtly serious or life-threatening.

We should also remember that cannabis plants can vary considerably, with different strains containing very different contents of THC (the constituent responsible for the ‘high’), and with over 100 different cannabinoids present in varying amounts across different strains, many of which do not have abuse potential but may still have significant therapeutic potential (e.g. cannabidiol)

There is no strong rationale for treating cannabinoids any differently than, for example, opioid drugs such as codeine or morphine, both of which are derived from a plant (the opium poppy), have been mainstays in modern medicine for decades, have abuse potential, and whose adverse effects, dependence liability and potential for harm are in fact significantly greater than those of cannabinoids.”

Professor Finn PhD is Professor of Pharmacology and Therapeutics in the National University of Ireland Galway and President of the Irish Pain Society.

I take 5,000 pills a year for my pain. 5,000. Let’s say I continue on these doses and I live to the ripe old age of 80. That’s 250,000 pills. A quarter of a million pills. In comparison to some of my friends, that’s a very low figure.

What happens to our bodies when we are on opiates long term?

Long term opiate use can cause veins to collapse

Can cause sedation

Can slow the digestive system (Gastroparesis)

Can cause greater sensitivity to pain (Hyperalgesia)

Can cause muscle rigidity

Can make the immune system weak

Can cause respiratory depression

Can cause twitching of the muscles (Myoclonus)

Can cause Hormonal Dysfunction

Can increase the risk of depression

the list goes on and on. I can’t imagine taking 250,000 pills for the next 50 years is going to do my liver any favours either!

What about Medicinal Cannabis?

Marijuana does have any proven side effects. THC binds to cannabinoid receptors, which are concentrated in areas of the brain associated with thinking, memory, pleasure, coordination and time perception. The effects of marijuana can interfere with attention, judgment and balance. Some studies have produced conflicting results on whether smoking marijuana carries a significant cancer risk but there’s nothing concrete. There is also conflicting evidence on whether long term use of Cannabis effects one’s mental health but again, nothing concrete. Scientists say that it may increase the risk of psychosis but, those studies seemed to focus on the use of Cannabis in teens and young adults recreationally, not medicinally. If someone has evidence to state otherwise, please do let me know so I can amend this.

There is a plethora of evidence that shows Medical Cannabis can be very beneficial for patients with chronic pain. Many of us would opt for Cannabis as it is diverse and doesn’t need to be smoked. It’s also natural so we could cut way back on the manufactured pain meds. Surely it would be much cheaper for the HSE to supply chronic pain patients (who have medical cards) with something that can be grown in abundance than to pay for trillions of pills each year?

Taken from Irish Health, ‘Long Waiting Times for Chronic Pain Patients’, Jan 2016

“Chronic pain affects around 13% of the Irish population, however those affected have to wait an average of two years before seeing a doctor specialising in this area. According to Dr Dominic Hegarty, a consultant in pain management at Cork University Hospital, chronic pain ‘presents a major challenge to the citizens and the economy of Europe’.

Most people affected experience their pain for more than two years and some are affected for 20 years or longer. Chronic pain patients make an average of seven visits to healthcare providers every year, with 22% making more than 10 visits.”

Imagine how these stats would change if medical cannabis was prescribed to chronic pain patients? If cannabis is as effective as the experts say for chronic pain patients, it could mean waiting times drastically reducing as many patients wouldn’t need to see as many specialists.

There is so many things wrong with our health system here in Ireland. Waiting times are abysmal across the board. Many of us finally get to see the specialists, get prescribed a cocktail of meds, exhaust all options for it not to work. The patients are loosing out. What does the Government have to loose by allowing those who have exhausted all options to try medicinal cannabis?

Let me leave you with this, dear Minister. People with chronic pain are three times more likely to develop psychiatric disorders according to Harvard University. So, not only are the Government and HSE footing the bill for pain treatment but for psychiatric treatment also. Three times more likely to develop conditions such as depression and anxiety, is it any wonder why there is such high rates of suicide amongst the chronic pain community?

Please think about the implications of excluding those of us with chronic pain. By allowing us to give medicinal cannabis a try, you’re potentially giving a piece of a person’s life back or saving one.

Sincerely,

A sufferer of chronic pain, a mother of two children with chronic pain disorders and of course, a citizen of Ireland.

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

Friday Feelings with Ecofluffy Mama

February 17, 2017 thezebramom 2 Comments

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.

“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.

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The usual Sunday post will be up as per usual!

So till then,

Z.M

Awareness, chronic illness, health, Rare Diseases, spoonies

Marfan Syndrome Awareness Month-Guest Blog

February 5, 2017 thezebramom 2 Comments

February is a special month to me, not because of Valentine’s day or a birthday, but because it is Marfan Syndrome Awareness Month. This is a month where I can shout about my rare condition as much as I like, trying to inform and educate as many people as possible. Conditions like mine don’t get a lot of awareness so awareness days and months are a great opportunity to teach people a bit about your condition. Mine is called Marfan Syndrome and it’s a rare genetic connective tissue disorder.

Think of the connective tissues in your body as glue, they help maintain the structure of the body, internal organs and other tissues, so they are pretty important! These tissues are found all throughout the body as well so Marfan can affect everything from your heart to your joints. It’s a genetic condition so most people inherit it from a parent, I inherited it from my Mum, but sometimes spontaneous mutation occurs which is when the gene just changes. The condition is mainly known for the life threatening heart problems that can occur as a result of it. Marfan causes the tissues in the body to become too stretchy and this means that the aorta, the main artery in the heart, is able to stretch beyond what it should, this is called an aortic aneurysm. Then if this is left to continue further the aorta could tear or even burst, this is called an aortic dissection and sadly both my Grandad and Uncle passed away from one. My aorta is currently stretching towards the point where I’ll need major open heart surgery to replace part of it, my surgeons reckon I’ll need the surgery in my earlier twenties.

That’s the not the only problem that Marfan has caused me though and not the only problem that has/will require surgery. Growing up as a child I only had mild joint pains and joint hypermobility but when I was a young teen I was diagnosed with Scoliosis, the sideways curvature of the spine. At first we thought that it wasn’t going to get much worse but unfortunately it got a lot worse and I ended up needing surgery to correct it. Surgeons spent 6 hours straightening my spine using metal rods and screws, it was a pretty brutal surgery and the recovery was tough. I also suffered a complication though and almost a year after the first surgery I had to go back into the operating theatre to have a screw replaced because it was sitting on a nerve and causing me severe pain.

After that my hips started hurting so off I went to the doctors again, I was referred to see a hip surgeon and x-rays revealed that I had another secondary condition because of Marfan. I had a hip deformity called Protusio Acetabuli which basically means that my hip joint sockets are too deep which is causing early wear and tear and cyst formation in the joint. I had my right hip replaced when I was 18 and my left hip will also need replacing but the 3rd diagnosis that came after that is complicating that situation. During that whole time I also had ever increasing pain in my lower back that was so severe that I had to start using a wheelchair and then a powerchair. MRI and CT scans revealed that I had a large 5.5cm Tarlov cyst sitting in my sacrum, the triangle bone at the end of your spine but before your tailbone. It’s a cyst that grows out of a nerve root and fills with spinal fluid, putting pressure on nerves causing pain and it also cause me severe headaches and migraines. The cyst is also eroding away my sacrum which is leaving me at risk of fracturing it, hence why the left hip replacement isn’t being done yet as the force of that surgery would almost certainly fracture my sacrum.

I also suffer with regular joint dislocations and subluxations as well as severe chronic pain and fibromyalgia. I’ve managed to turn my bad experiences into a good thing over the years though, I use my blog and social media platforms to raise awareness and I’ve also been able to work with some great charities such as The Hypermobility Syndrome Association and The British Heart Foundation. It can be lonely and frustrating at times having a rare condition but I find that the online spoonie and disabled community really help that, even if you aren’t talking to people with the same condition.

The last thing that I want to leave you with is some of the signs and symptoms of Marfan, key characteristics of the condition to look out for: being tall and slim with long arms, legs and fingers, hypermobile joints, small lower jaw, high roof of the mouth, flat feet, breastbone deformities, crowded teeth, scoliosis, lens dislocation in the eye(s), early cataracts & glaucoma and aortic dilation/aneurysm.

You can find out more about Marfan Syndrome and Shona’s experience with it on her blog: Shona Louise.

Awareness, chronic illness, family, health, Rare Diseases, relationships, spoonies, Uncategorized

A letter to my fellow chronic illness sufferers.

January 23, 2017 thezebramom 10 Comments

Hey there, hi there, ho there!

Recently I’ve read posts from fellow chronic illness sufferers about having to endure ignorant comments from strangers and sadly, friends and family about how how hard it must be for those in their life caring for them without their own difficulties being acknowledged. Now, I’m not saying that life for carers isn’t hard. They have it so tough but, what outside observers tend to forget is that there is a vulnerable person, in pain, unable to look after themselves who have feelings of loss, despair, grief and insecurity. Many sufferers are still dealing with the fact that they are not 100% independent. That can be a very difficult pill to swallow.

For those of you who have had to endure such ignorant comments, this letter is for you.

Do you ever have days where you think: “God, I’m such a burden.” or “I need something but I don’t want to ask for help again.”?

I do. All. The. Time.

How many of us have been with friends or family and listen to them go on and on about how wonderful your husband/wife/partner etc is for taking care of you? Most of them will be somewhat diplomatic but, there are times when you are unfortunate enough to endure a conversation with an ignorant friend or stranger.

You know your spouse/partner is wonderful that’s exactly why you are with them in the first place. You don’t need someone to tell you how hard it is for them to put up with your moods that are a result of fatigue, pain and pure unadulterated frustration. You don’t need them to remind you that you depend on them to help you with tasks that any healthy person could do for themselves.

When someone says: “Isn’t he/she great for looking after you?”

This is what we hear:

“You’re a burden on your husband. You know that, right? If you didn’t have him you would struggle and probably be alone.”

OK, OK. It might sound a bit dramatic but if it’s what you hear almost every time your illness is discussed it grates on you. Words are funny things. When people are already insecure in themselves they can read into things that may not have any ill intent. Chronic illness eats away at our bodies but it also eats away at our minds and self confidence.

You hear how great your partner is more than you hear how great you are for not getting into bed and never coming out of it no matter how much you want to do that sometimes. But that’s the nature of having a chronic illness, isn’t it? People simply don’t get it. Unless you have a life threatening illness, nobody really listens. Chronic illnesses aren’t “sexy” diseases that can be marketed as well as life threatening ones. People don’t get that your symptoms are for as long as you live-there is no cure and there is no looming death sentence.

Yes, it is really hard for caregivers. Especially for parents and partners of people with chronic illnesses. Caregiving can often be a full time job without the pay. But, imagine how hard it is for the person who is being cared for. Having to be cared for can be downright humiliating. You need help getting off the toilet when your hips are giving you trouble, you need to be lifted out of the bath because you’re dizzy. You need help dressing because your so fatigued after having a shower. You need someone to cook and clean for you because you simply can’t. It takes years for people to come to terms with this-if ever.

You shouldn’t have to be considered “really special” to take care of your significant other, isn’t that the whole point of committing to each other? In sickness and in health etc, etc? Isn’t it part and parcel of choosing to have a child or deciding to spend your life with someone?

I have so many friends who are chronically ill who have their husbands/wives/mothers etc acting as their carers. I know they have had to endure ignorant comments from strangers about whether or not they should have children, that they are a burden on their partner and that their partner is “a really, really great guy that puts up with a lot”. But, I know those same people fight every single day to face their illness and a world that is filled with so much ignorance head on. I also know that these people are so appreciative of everything the people in their support system do to make their lives that bit more bearable. I see them declaring their love and appreciation of their caregiver to the world. But I also know that these same people lay next to their partners on the couch or in bed after a really hard day. They look them in the eye and thank them for everything they have done today to help them endure the pain, the fatigue and all the horrible symptoms they put up with every single day.

Of course you should thank them. They didn’t ask for this life either and yet, they do it anyway and without complaining (well, most of the time anyway). Doing something special for your caregiver every now and then is a nice way to show your appreciation. If your significant other is your carer, sometimes the romance can dwindle and the relationship can go from lover to carer. So it is important to do something together that keeps that passion between you going. Even if it’s snuggling up on the couch and having a kissing and cuddling session. It goes both ways, though. Sometimes those needing to be cared for can feel inferior, childlike, useless,unattractive and yes, a burden. We will explore maintaining romantic relationships next week.

So you, reading this. If you’re chronically ill and have a loved one caring for you remember this; you’re not a burden. You didn’t choose to be sick. You take on the biggest task of all. Surviving.

Life has given you a pretty crappy hand but you’re still here and that should be applauded. You put up with more things in one week than most people deal with in a lifetime. You are good enough. You are not “lucky” to have a parent/partner caring for you. Sure, there are people who wouldn’t be up to the task of looking after a chronically sick loved one but that doesn’t make you any more “lucky”. Luck has nothing to do with it. You fell in love with a good person and they fell in love with you for the same reason. You are not your illness. It does not define who you are-unless you want it to. Being chronically ill does bring out the not so pleasant side of people but it also embellishes all the wonderful traits of you too. You learn to be more compassionate, more appreciative of the little things in life like a walk on the beach or an hour in the playground with your child. You learn to take opportunities-when you can. You learn that saying no is perfectly fine. If you’re not up to it, you don’t do it. Chronic illness takes so much away but it allows us to see the world in a unique way.

Bottom line is your caregiver is a wonderful person but, so are you.

Till next time,

Z.M

Awareness, chronic illness, Ehlers Danlos Syndrome, family, health, Rare Diseases, spoonies, Uncategorized

Being Chronically Ill means..

January 12, 2017 thezebramom 5 Comments

Hey there, hi there, ho there!

Hope everyone had a nice break over the holiday period and that you’ve recovered from all the travelling, cooking, early mornings and late nights.

In latest news I’m very excited to announce I have been asked to speak at a medical conference in Manchester this coming May. The conference is to educate and raise awareness of Vascular Ehlers Danlos Syndrome. I am truly honoured to have been asked to address medical professionals from all over the world. It’s a massive responsibility to represent the EDS community and I will do my best to explain the struggles we all face.

Anyway, I just wrote this piece for a bit of a laugh. I’m not trying to be a negative ninny (in case somebody doesn’t pick up on my sarcastic tone), I will get around to writing part two of my trip to London shortly. I know some of you were eager to read about prices and places to stay etc.

Hope you enjoy my latest blog!

One day of fun=several days of a flare up.

You’ve taken your meds, you’re feeling as well as can be. You put on your glad rags and you make it into the car. Even doing that much your energy levels start to drop and your pain levels start to rise but God damn it, your going to this party. You’ve been staring at the same four walls for weeks now. Even if you have to walk in with a cane or arrive in your wheelchair, you are going to spread your wings and be a social butterfly for one evening.

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You manage to spend an hour or so catching up with friends while listening to how “you look great and you’d never know you were sick by looking at you” when all you wanted to do was forget you were sick for one night. But getting out is worth being someone’s inspiration porn.

You go home and fall into bed. This is where you stay for the next few days only crawling out to use the toilet or to grab a packet of crackers to stop yourself from starving to death.

You have more sets of PJs than actual clothes.

You spend more time at home than you do outside so it’s only natural you’d spend a lot of time in what you’re most comfortable in. While many of us would prefer to get dressed and glammed up to make ourselves feel normal, others just don’t want to waste energy on putting on clothes and make up. A lot of the time you choose between getting dressed or putting on a load of laundry or ya know, eating?

Hey! If these dudes can walk around in their house all day in their PJs, why can’t I?

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Your bed is your best friend and your enemy.

When you’re ill a lot of the time your bedroom becomes your place to escape so that you can rest and recover. Unfortunately you do end up spending a lot of time in bed and sometimes it can be for several days. You can often end up resenting your bed. While the majority of society love their beds, people who are chronically ill associate it with being in pain.

You often develop a less than desirable odour.

When you’ve been in bed for a day or so, you develop a very specific smell. It’s a mix of sweat, anguish and food that you’ve spilled on yourself. Getting up for a shower can be very tough on our bodies. Again, it’s about picking and choosing what you spend your energy on. Bathing or making dinner. The kids have to eat. The smell won’t kill em but starvation probably will.

When you do get round to washing yourself you feel somewhat human again. But then you have to go lie down.

If someone were to shake you, you’d probably rattle.

You can never just have one chronic illness. No, no, no. There’s always a domino affect. Your main illness causes all sorts of weird and wonderful sub conditions. Consequently you take a whole lotta pills to keep yourself functioning. You’ve got one cupboard in your house that looks like a pharmacy, you have to brace yourself when you open it as more often than not, something falls out. People are always shocked to see it and know that if they get a headache while in your home you’ll have an array of pills to kick that sucker’s ass.

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A successful day for you is getting dressed and actually leaving the house.

Just grabbing whatever has been tossed at the end of your bed and leaving the house to buy food or collect the kids is enough to gush about when your significant comes home from work. Victory is yours!

You get annoyed listening to people crib about having a cold, going to work or having to go to out socialising with their friends even though they are so00 tired.

Many of us can’t work or leave the house when we want so don’t complain and tell us “I know how you feel” because you have a cold. Difference is you’re going to get better. Oh no! You have to go to a Christmas party? My heart bleeds for you.

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You have watched anything worth watching already.

Netflix and chill doesn’t mean the same thing to us. It literally means to binge watch shows while doped up to our eye balls on pain meds. Many of us will tell you we have spent many a day watching OITNB while curled into the foetal position because said meds aren’t working.

Till next time,

Z.M

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One mother's experience of life with Ehlers Danlos Syndrome