Mother of two amazing kids. A sufferer of Ehlers Danlos Syndrome, Autonomic Mediated syncope, Postural Orthostatic Tachycardia Syndrome and a whole host of other conditions. Loves to write about parenting and chronic illness.
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 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?
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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 evienevin87@yahoo.ie
Be sure to put “Friday Feelings” in the subject bar.
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.
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…
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.
Lette and her baby, Boo.
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:
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.
As I’m writing this it’s Rare Disease Day. I have a rare disease called Hypermobile Ehlers Danlos Syndrome. This condition is believed to affect 1-5,000/10,000 people. Although, many experts now believe it may not be rare at all, just rarely diagnosed. The new diagnostic criteria (released on March 15) may lead to a more concrete number.
Anyway, so I said earlier on in the week that I would explain my absence from social media and why my blog was late and it just so happens to fit in nicely with Rare Disease Day.
Taken from the Journal.ie:
The National Rare Disease Plan for Ireland up until 2018 was launched in 2014 by the former Health Minister, James Reilly.
The key recommendations include creating both a Clinical Care Programme and a National Office for Rare Diseases.
The Minister said, “This is a very important plan because we have 8,000 different rare diseases in a small island like ours. It’s very difficult for patients to get a diagnosis and then indeed treatment.
So we had a young man here earlier who had his picture taken who is having is treatment in the UK at the moment for his rare condition.
Reilly explained how this plan has looked at “how to shorten that journey and reduce the frustrations that people experience trying to get a diagnosis, and then indeed organising the treatments.”
The former Health Minister said a designated Clinical Care Programme for rare diseases will improve specialist services and allow for the development of a joined up model of care for patients. While the National Rare Diseases Office will identify Centres of Expertise for various rare diseases, provide a helpline function for patients and families and provide surveillance of national rare diseases.
James Reilly added: The significance of this plan cannot be overstated because it provides us with a roadmap for the prevention, diagnosis and treatment of rare diseases. “I fully endorse this plan as the means to positively shape how we look after people with rare diseases in Ireland”.
So at present, there are 8,000 diseases affecting millions of Irish citizens. Although we might be genetically rare, together we are actually very common. 1 in 10 people in the UK have a rare disease.
So three years later has anything changed for rare disease patients? From what I can tell? No. Well at least nothing for anyone with my condition. We still have no Clinical Lead Consultant, no schemes to help us get Treatment Abroad. The current Treatment Abroad scheme only covers referrals to public consultants. All the experts in the Hypermobility Unit I attend are private. There is still a huge lack of awareness amongst medical professionals. The length of time to get diagnosis is still too long or it never happens at all. Approximately 90% of patients I surveyed learned about Ehlers Danlos Syndrome before the diagnosis was confirmed. So it’s the patients that are essentially doing all the work. My own story to diagnosis reflects this.
As I’ve said my reason for being late with this blog fits in nicely with the reflection of how rare disease patients are treated across the world but particularly in Ireland.
I was called by the wonderful Professor Rodney Grahame Friday two weeks ago. He asked me to come to London the following Wednesday to be examined as I am having some rather bizzare symptoms. Just before I get a migraine/headache one of my eyes bulge, the headache starts shortly after and my nose begins to pour a water-like fluid.
My eye at the beginning of an episode. Note my right eye (your left) is bigger than the other one. It will get slightly bigger as time goes on.
Professor Grahame had never come across these symptoms before which, for him would be rather rare in itself. He said I should go ahead and have my upright MRI and I only got my appointment times the following Monday. I had to fly to London the following day to be at Professor Grahame’s clinic on Wednesday morning.
The flights were phenomenally expensive and on top of all the stress of sorting out flights and accommodation, I had to leave my daughter for the very first time. She is almost 2 and we had never been apart longer than a few hours, let alone 3 nights and two days. We cosleep and breastfeed so we are very connected. I had to organise getting a breast pump so I wouldn’t get mastitis, plugged ducts or reduce my supply. Luckily, I am apart of a very close knit breastfeeding community so one lovely mummy donated a snazzy electric pump to hold on to as I’ll be over and back from London for the next year at least.
So on Tuesday my Dad and I flew to Heathrow via Cork airport. I brought my wheelchair with me as I was approaching that time of the month which makes me more prone to dislocation and soft tissue injuries. Plus going around London for 2 days was going to be tough on me anyway.
Me arriving at Earl’s Court Underground
We stayed in Earl’s Court as per usual as it is a handy spot in the centre of everything. We were one tube stop away from the upright MRI clinic, Medserena on Cromwell Road and just 15 minutes from St John’s and St Elizabeth’s in St John’s Wood. Earl’s Court is also only one stop away from Kensington which is where all the big museums are such as the the Science Museum and the Natural History Museum.
On Wednesday I got to meet the wonderful Jared, Sarah and Annabelle Griffin of Annabelle’s Challenge before my appointment with Professor Grahame. I’m speaking at the Vascular EDS conference Jared is organising in May. We also combined forces and launched the REDS4VEDS campaign worldwide to raise awareness of Vascular EDS.
From left: Jared, Dad, Me, Annabelle and her friend at St John’s Hospital.
At noon I met with Professor Grahame. I am thrilled that he managed to squeeze me in during his last week of clinic as he is retiring from the Hypermobility Unit. He examined me and looked at the photos of my bulging eye.
He questioned whether I might have a problem with my Cerebral Spinal Fluid (CSF) and we also wondered whether I might have a Chairi Malformation as I have had weakness and other issues linked to Chiari for years.
Luckily Dad was on hand to show him a photo of my eye bulging and gave my medical history as a child specifically mentioning the weakness on my left side and my problem with going anywhere with artificial light and crowds as a child. I know now that it’s sensory processing disorder but nobody has put that down on paper as yet.
The next day we went to Medserena for my upright MRI. Two very dear Zebra friends of mine warned me that this wasn’t going to be as easy as a supine MRI and that both of them had never fully recovered from the scan. I really underestimated their warnings.
Professor Grahame had actually rang the clinic to make sure I was seen the day after my appointment with him. He ordered a scan of my cervical spine and craniocervical junction.
The staff at Medserena was very accommodating and polite, you didn’t feel like a client, you felt a visitor to someone’s home, not a cold and sterile clinic.
I went into the dressing room to put my valuables in the safe. Luckily, I had dressed in a loose top and a pair of leggings so I didn’t need to put on a gown. Just before I went in I took my Tramadol and Midon as suggested by the friends who had undergone this scan before.
Nervous, I found myself thinking about my children and husband. I pictured Olivia crying for mummy’s milk and Alex looking for cuddles in the middle of the night. I should be at home with them tonight, not hundreds of miles away across the ocean.
I sat down in the machine, luckily I got to sit as I was expecting to be standing. The scan wouldn’t have lasted that long if I was to stand because of my Orthostatic Intolerance.
The first position I had to look straight on. Because the scan takes 1.5 hours in total., the radiographer put a film on for me to watch. I had a choice between Skyfall or Tarzan. Didn’t matter to me either way as I didn’t have my glasses on, I could see diddysquat.
So, after the first position it was time to flex my neck downward, then upward and then right. There were a few occasions we needed to repeat scans as my images came out blurry. I had no idea why as I had stayed as still as I could. It’s ridiculous how still you have to be in an upright compared to a supine MRI. You can’t cough, you have to be breathe shallowly and you can not swallow. So you sit there five minutes at a time with saliva pooling in your mouth and your neck flexed in a position for five minutes.
When it came to my last position (neck turned left) I was in agony. After two attempts of this position, we had to give up. I was visibly in pain and it showed in the scans as they were very blurry.
Once I gathered my things in the dressing room, I went back into the reception and burst into tears. Not because of the pain-it’s not often that pain will make me cry now. No, it was my “fight or flight” mode gone into overdrive. I was so overwhelmed with the whole situation. Since the MRI finished at 5.45 (I went in at 3.45) my back, shoulder and neck had been giving me trouble. Two weeks later the problems persists with swallowing becoming uncomfortable and slightly painful.
The lovely receptionist brought me some juice and chocolate for my shock. I was a mixed bag of emotions. I felt like I had been something very traumatic had just happened to me. For those of you who’ve not gone through this, it might sound dramatic but those who’ve been through this know my feelings are perfectly valid. The radiographer gave me a CD of my scan images and we left.
I’m sure for people without my issues, the MRI isn’t as draining or painful. But with the problems I have with my neck, it was torture.
That night I took a sleeping pill and slept from 9.30 until we had to get up for our flight at 7am. I had a headache like I was hungover, my whole body ached more than usual. This scan really did a number on me. But, I was going home. I’d see my babies and my husband and sleep in my own bed tonight.
The Aer Lingus staff were amazing on the flight home, very pleasant and very accommodating. Even though we were 30 minutes late taking off, we arrived just shortly after our arrival time. I was brought to the front of the queue in my wheelchair for every point in Heathrow and again in Cork, much to Dad’s amusement and delight.
When we came through the arrival doors of the airport the children saw me. Alex came bounding over and it took Olivia a second or two to realise mommy was home. She then came running over. Of course, it didn’t take her long before she climbed on my lap and latched on. Hubby came over with a big bunch of flowers to welcome me home. I have been on many trips before but never had a welcome party like this. My heart swelled.
The journey home was tough as the roads in Cork are abysmal especially after Hurricane Doris had come sweeping through.
I landed myself into my usual spot when I got home, on the couch. I’ve been quite ill since and have only managed to leave the house a couple of times in two weeks.
I received my report from Professor Smith in Medserena last Wednesday. Thankfully no Chiari was noted.
Images from my upright MRI
The report was very detailed being four pages long. Here’s the Professor’s conclusion:
In the cervical spine there is reversal of the normal cervical lordosis in the neutral position with evidence of instability at the C4-5 and C5-6 levels.
There is no evidence of basilar invagination or of cerebellar tonsillar ectopia.
Whilst the atlas is normally aligned over the axis. There is deviation of the odontoid peg to the left in the presence of intact ligaments of the craniocervical junction ligamentous complex.
On looking to the right and to the left the odontoid peg moves to the contralateral side indicating an element of laxity of the ligaments.
I am awaiting a call from one of my consultants to discuss the results and a course of treatment for my issues.
I return to London on April 9th this time for Autonomic Tests and physiotherapy. The children will be coming with me this time to be assessed by their physio too.
It’s downright criminal that we need to disrupt our lives even more and travel abroad to access experts and have these tests. They are nothing overly complicated and could easily be done here in Ireland but nobody does them. There are physiotherapists in Dublin who could look after the children but it is actually more hassle travelling 3 hours to Dublin than it is flying 45 minutes to London. At least we know the children are in safe hands there.
I came across this image a few days ago while writing this blog and it really does ring true. This statement does not ring true to the doctors who look after us in the UK, of course but to the medical professionals who have no urge to learn or help those of us with Ehlers Danlos.
The theme of my talk at the Vascular EDS conference is about this very topic. Patients become the real experts when it comes to their condition. We know more about it than doctors who have trained for a decade or more.
I am the driving force behind my own medical care. For years I let doctors fob me off and dismiss my issues as nothing more than depression.
Luckily I have a great GP now who listens and does exactly what I ask her to do. I’m in charge of my own referrals, meds and treatments. She trusts my gut and knowledge. I am so grateful to have her, I know so many others who are not quite as lucky.
As I said, we are back in London in April and this visit is going to cost us 5,000 Euro.
I have friends helping to fundraise through coffee mornings and the likes.
My GoFundMe has been our main source of treatment money so far and I’ve been blown away by people’s genorosity.
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:
It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?
and links to your blog and social media to evienevin87@yahoo.ie
Be sure to put “Friday Feelings” in the subject bar.
So until Sunday (I know, I know I said I’d have it up during the week),
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:
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.
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.
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.
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
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.
So last time we discussed how sometimes people forget that life for the chronically ill person is far more difficult than a carer’s. I briefly touched on how relationships can dwindle from lovers to a carer-patient relationship when your signifiant other is acting as your carer. So, with that in mind, let’s look at some ways you and your partner can keep things romantic even when chronic illness tries to intervene. A lot of the things I’m going to talk about can be applied to any couple that may have let the romance die out a little.
Kiss.
When you’ve been with someone a long time, sometimes you genuinely forget to kiss-even if you’re not chronically ill.
“Even just a quick touch of the lips.”
When you’re so busy concentrating on your illness and/or family life it can be easy to forget to just stop and have a moment together.
Do something together at least once a month.
Whether it’s getting in some alcohol free wine/beer, watching a romantic movie or having dinner together-make the time to spend a couple of hours together not talking about family/illness etc. Even a gentle stroll on the beach/ woods while holding hands can be just enough to keep that flame-a-flickering.
Go back to where you first met.
If it’s possible, go back to the place where you first clapped eyes on each other. Try and remember how you felt that day. Recreate your first date. Go to your friends house and help them get you ready.
“Have your partner pick you up or meet you at the place where you had your first dinner/drink together.”
Do something nice for each other.
It doesn’t have to be a birthday or a special occasion to do something nice for your significant other. It doesn’t have to be a grand gesture or anything expensive. Write a love letter and leave it somewhere for them to find. Make a playlist of all their favourite songs or songs that remind you of them. Run a bubble bath, light some candles and let them have some time to themselves.
Massages
Get some nice oils, light some candles and help get those pesky knots out. PLEASE do be careful if you’re massaging someone with a hyper mobility syndrome-last thing you want on your romantic night is to end up in A&E!
Go on a weekend break/holiday.
If you’re like me and are seriously affected by low pressures and crap weather, you might appreciate getting away to somewhere warm (but not humid). A nice week away to the Mediterranean can give you and your partner a break from pain and all the other symptoms associated with your condition.
Renew your vows.
You don’t need to recreate your wedding day-unless you want to. You can simply organise to renew your vows with your priest/registrar/humanist. You can do it alone or just invite your close family and friends.
I love you.
Those three simple words should be said every day. Whether it’s first thing in the morning or last thing at night.
“Let your significant other know that they are loved.”
Just like kissing, sometimes it can be easy to forget to say it. Especially when brain fog is a factor of your illness. Set a reminder if you have to!
Sexy time.
If you can do it and want to, go for it. 90% of the time us spoonies don’t feel sexy or attractive. Sometimes you gotta make yourself look good on the outside to help you feel better on the inside. Make yourself feel sexy by having your hair/ make up done. Have a relaxing bath, shave your legs (if you want), get into a nice nighty or PJs. Do whatever makes you feel good about yourself. Sometimes after all that effort-the last thing you want to do is to do the horizontal mambo but if you still have some spoons left and you’re not in too much pain, use that last bit of energy to make lurve. Remember, you don’t have to necessarily have to “go all the way” sometimes some heavy petting can be just as nice.
Till next time,
Z.M.
x
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The Zebra Mom 