Tag Archives: help

Friday Feelings with The Zebra Mom

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

 

giphy

“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

 

 

 

 

A letter to my fellow chronic illness sufferers.

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.

e339d4833d8d9e58394076402074a7e4

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

x

A Simple Guide to The Ehlers Danlos Syndromes

UPDATE: On March 15 2017, criteria and classifications of The Ehlers Danlos Syndromes were updated for the first time in 20 years. In light of this, I will update my guide (with the new information made available) to highlight new diagnostic criteria and classifications. You can read more about the changes here.

Because there are now 13 types of EDS, I have only covered Hypermobile Ehlers Danlos Syndrome (hEDS), Vascular Ehlers Danlos Syndrome (vEDS) and Classical Ehlers Danlos Syndrome (cEDS). If you would like me to do another guide to the rarer types, please comment below or email me. I would be more than happy to oblige!

“You’re suffering from Fibromyalgia!” “You’re depressed!” “You’re imagining it!”

“You’re malingering!” “You’re attention seeking!-”

“No I’m not – I have an Ehlers Danlos Syndrome!”

 The Ehlers Danlos Syndromes (EDS) are a group of conditions that are poorly understood, even by many in the medical professions. It is essentially a defect in the production of collagen, an essential component of connective tissue.

Many articles about EDS contain medical terminology that can be difficult to understand. The purpose of this guide is to put the medical terminology in plain language and help non-affected family and friends understand exactly how EDS affects people and their day-to-day lives. The medical terminology is included in italics. Links to web pages are included throughout the article if you want to conduct your own research.

Why are they called The Ehlers Danlos Syndromes (EDS)?

The name of the condition itself is quite a mouthful! Ehlers Danlos Syndrome (Eylerz-Dan loss Sin-drome) is named after the two physicians, Dr Ehlers and Dr Danlos, who first described this group of connective tissue disorders.

What is EDS?

People with a type of EDS will produce faulty collagen. Collagen is essential for healthy connective tissue, which is found throughout the body supporting and connecting the different types of tissues and organs, including tendons, ligaments, blood vessels, internal organs, bones, the blood and skin.

Imagine a healthy person’s connective tissue as being like regular household glue. People with EDS have collagen that is more like chewing gum; stretchy and not very good at keeping things in place.

What causes EDS?

There are a number of different genes responsible for making collagen and connective tissue, so there are different types of EDS depending on which genes are faulty. There are 13 types of The Ehlers Danlos Syndromes

How did I get a faulty gene?

It is possible that the faulty gene may have been inherited from one parent, or both parents, or not inherited at all. It may be that the defect has occurred in that person for the first time. This happens in 25% of cases.

 How I explained it to my 7-year old son.

A carpenter makes a wooden chair. Instead of using wood glue to place the joints of the chair together, he uses chewing gum. Once finished, the chair looks fine. But, as time goes by and the chair is used, the chewing gum doesn’t work very well at keeping the joints together. Without proper glue the chair can begin to get wobbly. I went on to explain that with proper exercise he could help to strengthen his muscles so that they acted like binding around the joints to help support them.

What does EDS feel like?

Having an EDS feels different from person to person, depending on their type, but many describe it as having a lifelong flu. Have you ever had the flu? Do you remember how painful it was having those aches and pains in the joints and muscles? Do you remember how tired and run down you felt? That’s what it’s like for people with EDS only worse and it never goes away. In addition to the daily aches and pains people with EDS also have to deal with very painful headaches, gut issues and then of course there’s the issue of dislocation. Many EDSers can’t go a day without a joint popping out. It can happen simply by stepping off a footpath or picking up a pot when cooking. A lot of people with EDS are also affected by the weather. When it is damp or when the air pressure changes their pain can increase.

How does EDS affect people?

Because collagen is everywhere in the body, there are hundreds of ways EDS can affect people. Any two people with EDS may have very different signs and symptoms, this includes people with the same type. In som,e the condition is quite mild. For others it can be disabling. Some of the rare severe types can be life-threatening.

One of the problems with diagnosing EDS is that many diseases share the same symptoms. As a result, EDS can be easily confused with other conditions and it may be difficult for doctors to recognise. But there are ways to tell if someone may be affected by EDS and need more thorough investigation. Some of the investigations available are listed later.

The most common symptoms of EDS (hEDS and cEDS) are:

  • “Double jointed” – Hypermobility: joints that are more flexible than normal.
  • Loose, unstable joints that dislocate easily.
  • Clicking joints.
  • Joint and muscle pain

In addition there may be

  • Fatigue (extreme tiredness).
  • Injuring easily.
  • Fragile skin that bruises and tears easily. The skin may also be stretchy.
  • Digestive problems
  • Dizziness and an increased heart rate after standing up. (Postural Orthostatic Tachycardia Syndrome or simply POTS for short)
  • Incontinence of urine in women

Digestion.

If food in the stomach doesn’t move through the body to make its way out it may just sits in the intestines and can cause a feeling of fullness, nausea, vomiting, stomach pain, to name just a few symptoms. This condition is known as Gastroparesis. (gas-tro par-eesis).

Nervous System

Another condition than often affects people with EDS is a fault with that part of the nervous system controlling the “automatic” functions of the body; things like blood pressure, breathing, heartbeat, digestion, how hot or cold you feel and the way your organs work and so on. This is called the Autonomic Nervous System. When it doesn’t operate as it should the conditions is called Dysautonomia (Dis-auto-no-me-a). Common symptoms of this are trouble with digestion, dizziness and fainting.

Dysautonomia affecting the heart.

The most common type of Dysautonomia causes dizziness and an increased heart rate after standing up. This condition is called Postural Orthostatic Tachycardia Syndrome or simply, POTS for short.

Some sufferers have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life things like bathing, housework, eating, sitting upright, walking or standing can be very difficult. They may feel dizzy or even faint from doing these things.

What are the symptoms for POTS?

People with POTS experience fatigue (extreme tiredness), headaches, lightheadedness (feeling dizzy), heart palpitations (when their heart beats so hard you can hear and feel it), exercise intolerance (feel ill when exercising), nausea (feeling sick), diminished concentration (hard to concentrate), tremulousness (shaking), syncope (fainting), coldness or pain in the arms, legs, fingers and toes, chest pain and shortness of breath. People with POTS can develop a reddish purple colour in the legs when standing; this is believed to be caused by blood falling down in the body because of weak veins. The colour change subsides upon returning to sitting or lying position.

Can you tell someone has EDS just by looking at them?

The short answer is no. Some may have typically blue sclera (whites of the eyes), they may have translucent skin (see through) and you may even notice how bendy they are. But some people may have some of these things and not have EDS.

Many people with the type of EDS that affects blood vessels (Vascular Ehlers Danlos Syndrome or simply, vEDS) do have some facial characteristics. Notice in the picture below that the people have big eyes, thin nose and lips.

veds_type_poster3_2

Can EDS kill people?

Some people think it can’t but actually, EDS has led to the untimely death of people all over the world. vEDS is considered the most serious form of EDS due to the possibility of the heart or organs tearing.

Many EDSers live a life of constant pain. This pain and misunderstanding from their medical teams, families and friends can make a person feel very sad and alone which can lead to depression and even suicide.

What treatments are available for people with EDS?

Because EDS is considered “rare” there are not many doctors willing to learn about it. Types such as hEDS and cEDS can be somewhat managed through specialised physiotherapy. Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles around a joint can help stabilize the joint. Your physical therapist might also recommend specific braces to help prevent joint dislocations. Occupational therapy is also useful to help manage everyday life. Pain relief is very important for people with EDS.

EDSers should also be under the care of a Rheumatologist (a doctor who looks after bones and joints), a Cardiologist (heart doctor). There may also be a need for more specialised doctors such as Neurologists (doctors who look after the nervous system) or all of the above plus many, many more. Sometimes operations are required to repair joints that have dislocated frequently and haven’t healed properly.

Do all people with EDS need wheelchairs?

Not everyone will experience EDS the same way, some people can live normal lives and manage very well with physiotherapy and pain relief. Others may need to use wheelchairs or walking sticks to help them get around. Some people with EDS also have Gastroparesis which we discussed earlier and may need to be fed using a tube. Others may only have mild tummy problems. Some people with EDS may have to go to hospital a lot while some may only go to their GP every few months. But, just because one person can live their lives fairly normally, it doesn’t mean they don’t have EDS or that their pain shouldn’t be taken seriously.

Can you catch EDS, POTS or Gastroparesis?

No. EDS and other sub conditions are not contagious. If you know somebody with EDS, don’t be afraid, you’re not going to catch anything from them. So, if you’re avoiding someone with EDS, go make friends with them.

 How can I help someone with EDS?

Be there to listen if they want to talk about it. Some people are afraid to tell you how they feel because they think friends and family don’t want to hear them complain. Ask them how they are and if you can do anything to help them. Doing shopping or household chores can be a huge help and it would be most appreciated. If you’re friend or family member has EDS and can’t access appropriate treatment like here in Ireland, write to your local representatives to tell them about EDS and the lack of care that is available. Help raise awareness in the public by sharing articles or pictures about EDS. Experts believe that EDS is not rare, just rarely diagnosed.

I will update the Diagnostic Criteria for cEDS, hEDS and vEDS in the coming days.

*Special thanks to my Dad who helped me edit this guide.*

Do you think anything else about EDS needs to be explained? Let me know in the comments!

Z.M

x

 

Tongue tie DOES affect breastfeeding

 

I never thought I’d be brave enough to share this photo but after much encouragement from friends to share my story, I apprehensively upload it. If it helps one woman get through a rough patch, then it is worth any possible embarrassment. This was me when my little girl, Ollie was three weeks old. I was exhausted, actually I was beyond exhausted. I was a zombie trying to disguise myself as a functioning member of society. I was pumping every two hours to get what little breast milk I had to feed my precious little girl. She had an anterior tongue tie that meant she could not physically latch.

After she was born, I knew something wasn’t right. Her latch felt shallow. “I’m pretty sure she has a tongue tie,” I said to the midwife. The midwife glanced inside my baby’s mouth. “No, no, she doesn’t.” As if I was some silly little girl that didn’t know what she was talking about. This isn’t my first experience of tongue tie, lady.

The next three days in hospital were the worst of my life. I began expressing colostrum. One of the younger midwives was very kind and helped me. While I hand expressed milk, she knelt beside me with a syringe and sucked it all up. My baby was having on average 1ml an hour. That didn’t worry me though as I knew baby’s tummy could only hold only a few millilitres at a time anyway. There was a suggestion of giving her formula. At that time I said “If her blood sugars are low, we will talk about it.” Her blood sugars were fine so I continued pumping every hour on the hour. I was exhausted but I was determined to get through this.

 

Formula was mentioned another couple of times so I was eager to get the f**k out of that hospital. If I wanted to breastfeed no way was I going to be successful stuck in there, with half arsed support. I knew my daughter had a tongue tie and the midwives were clueless, shoving my daughter’s face into my breast in frustration.

I rang a private lactation consultant who I had a good relationship with through my work as a health reporter. She confirmed that baby had a significant tongue tie and that it would need to be clipped.

We travelled an hour away and paid €200 to have my daughter’s tongue tie clipped. It was the most expensive two seconds of my life. The GP who performed the procedure said that it was one of the worst anterior tongue ties she had ever seen and that my daughter’s tongue was pretty much non functioning.

 

 

Those words..non functioning. Meaning my daughter would have had a plethora of problems later on, including her speech. Now, imagine if I wasn’t as well informed and educated and I had been and I had taken the midwife’s word that my daughter’s latch was fine. Imagine I wasn’t determined to breastfeed. I would have given up within the first 2 days. The only reason I was so well informed this time is because I found out my son had a posterior tongue tie when he was 3. I only managed to breastfeed him for 2 weeks. Feeding with his tongue tie caused my nipples to blister, bleed and crack. I cried at the very thought of feeding him.

 

After the tongue tie was clipped, my baby’s latch was getting better and better. As Dr Jack Newman says “babies learn to breastfeed by breastfeeding.” It was just a matter of time and practice for the two of us. I was continuing to pump still as it takes up to 2 weeks for baby to learn how to latch again.

By 6 weeks she was exclusively on the boob and we were both so happy. I was so happy to sleep again! Instead of waking up every two hours to pump a couple of ounces, I kept baby close in bed with me. When she woke, it was just a case of popping boob out, latching her on and drifting back to sleep.

 

There is no doubt that tongue tie affects infant feeding. It can affect bottle fed babies too! There is a question over whether lip tie affects feeding but anecdotal and some scientific evidence suggests it might. It needs to be explored further.

Both my children have lip tie. Ollie’s lip tie is pretty significant but it doesn’t affect our feeding, thankfully. You’ll notice the people with significant lip tie immediately, they have a gap between their two front teeth.

The thing is, I’m not angry at the staff in the maternity hospital for letting me down. I’m angry at the whole system. Our health care professionals including midwives, public health nurses, dentists, consultants and GPs all need training on this subject. Too many women are being fobbed off and it is affecting the health of our children. It’s also costing the government €12 million a year! That’s how much we would save if all Irish women breastfed. But, at present we are doomed to fail. Things won’t change until support is increased and training is up to date amongst health care workers.

If my story rings any bells please do not beat yourself up for not being able to breastfeed. Don’t feel guilty, feel angry! You were let down! Once you come to this realisation you can use your own experiences to help other mothers. Breastfeeding is a learned and skill and yes its bloody hard in those first few weeks but it isn’t meant to hurt! No matter what your aunt, grandmother or friend says. If breastfeeding hurt, we would have never survived as a species. Think about it for a second.

If you are having trouble breastfeeding please contact Le Leche League or a lactation consultant.

Without my lactation consultant, I would have never made it to this milestone of six months. The help is out there, go seek it.

X