I came up with this medication cycle idea after I started some new meds recently. Annoyingly, the amount of meds I need to take to keep my body functioning is rising. You might hear from people who are not chronically ill that you’re taking too many medications. There might be something about big pharma in there too. Cue eye roll* What they fail to realise is that without these medications, you can’t sleep, you can’t eat, you can’t get out of bed etc. The list goes on. It is not unusual for a person with a chronic illness to have multiple illnesses or dysfunctions.
This week I decided to do a tongue-in-cheek blog post. I know some of the posts have been heavy of recently. However, these posts are so necessary. But, I promise I will continue to mix things up. I know that the experiences below may not apply to everyone. I have based this cycle on what I and a lot of my spoonie friends experience.
The New Medication
You go to see your GP with some weird symptom. You’ve probably been dealing with this issue for a while but it’s been put on the back burner while you deal with other debilitating symptoms.
You walk out of the doctor’s office with a prescription and you feel relieved that you’ve been taken seriously. It might be weird to healthy people but sometimes the idea of a new medication offering relief from symptoms can actually be exciting.
This is going to the medication that changes my life, you think. This is the one. You’ve probably said this 20 times before but this time, it’s going to work. Your life is going to change for the better. You’ll be able to work again. You’ll have a social life. Basically, you have unrealistic expectations about this medication. You are the kid skipping home from the toy shop, eager to tear open the packaging.
The Waiting Game
It’s not working. That’s it, your hopes and dreams are crushed. Your doctor did warn you that it might take a while for the meds to work but nope, they are just not working at all. You’re frustrated. You throw yourself on the bed in despair, like some Disney Princess who has been locked in a tower.
The Side Effects
You start to notice the original symptoms are not causing you much trouble now but God damn it, you’re starting to experience some new symptoms. Alternatively, your symptoms have become much worse. You take out the perfectly folded leaflet that seems to go on forever. You eventually find the section in your language and the list of side effects is as long as your arm. But, there it is in tiny black writing, the symptoms you’re trying to treat are also side effects of this new medication.
The medication is used to treat dizziness and yet the front warning says “Warning: may cause dizziness”. Like, WTF?
You develop a whole new host of symptoms. The medication that was prescribed to treat your overactive bladder is now causing insomnia and constipation. That’s right, first, you can’t stop running to the bathroom and now you’re lying awake thinking about all the times you could poop with ease.
The. Weight. Gain. Don’t even talk to me about the weight gain. As disabled people with chronic illnesses, it’s fair to say we don’t get out much so you won’t exactly find us hitting the gym five days a week. But also, we may not eat a whole pile of food thanks to some other medication you’re on or illness. Yet, you’re bigger than when you were in college eating 16-inch pizzas by yourself after a night of beer.
For once, I would like a medication that says “Warning: may cause extreme awesomeness”. You know, you wake up with the body of an Olympic swimmer, with a voice like Beyoncé and the baking skills of Mary Berry.
Back to the Doctor
That’s it, you got to go to your doctor and sort this all out but, you’re so tired from not being able to sleep and you’re in too much pain from not having pooped for a week that the very idea of getting up, washed and dressed is the equivalent of a “normal” person running a full marathon. “Be graaaaannnnnddd”, you say. I’ll survive another day.
Back to Square One
It has taken you three whole days to work up the strength to get to the doctor’s office. You sit there in the waiting room anxiously. The memories of not being believed or your symptoms dismissed rise to the surface as they do after years of mistreatment (or rather no treatment at all).
You are finally called in and you sit there, waiting for the doctor to bring your file up and notice the new meds started the two weeks before. You explain that you’re having pretty crappy side effects from the news medications. This is when one of two things will happen.
You’ll either be given a script for a new medication or
2. You’ll be told that all this type of medication produce these side effects.
If it’s number one? Begin the cycle again. Two? You’re given new medications to treat the side effects and the cycle for those medications begin again. Sometimes, you might be lucky and the new medications might just work.
Are you a new mama with under-eye bags that could rival a Louis Vuitton? There are so many hats we wear as humans in this rollercoaster society. As adults, we have endless streams of responsibilities and stress. No doubt these factors can have an effect on your mental health at some point in your life.
As a mother, external stress factors affect you. In addition, you are also responsible for keeping a whole separate human.
It is not surprising that stress and anxiety levels become elevated after the birth of a child. What steps can we take to reassert authority over our overworked stress responders?
Check out these seven ideas for managing stress and cultivating stability. These tips can be useful for in your role as caregiver and primary support system. These tips apply to any parent who may be struggling with their mental health.
Don’t Go It Alone
Talk about what you are feeling. One study conducted by Dr. Michael O’Hara, Ph.D. investigated external influence and postpartum depression. It’s reported that women are more likely to suffer from Postpartum depression as a result of not feeling supported by their partner after delivery.
Whether it be a spouse, friend, or support group, reaching out and sharing your emotional journey will not only ease your mind and soul, it will also allow those closest to you to better understand your emotional situation. Many people find talking about mental issues uncomfortable, but remember; that mental health issues are not uncommon in mothers. You are not alone.
Tip from the Zebra Mom:
There are great Facebook groups for mothers with Chronic Illnesses. Contact The Zebra Mom Facebook page for a list of helpful groups. Having an online ‘village’ can do wonders for a mom who can’t get to support group meetings. It is also comforting to know there are others out there who know exactly how you feel. It is far from unusual for mothers with physical illnesses to struggle with their mental health.
Yoga has earned a powerful reputation in the healthy living sphere, as a cure-all for both physical and mental health. There is a multitude of ways this practice could benefit you. While yoga alone will not serve as a blanket treatment, there is research that shows the benefits of a regular practice to be tangible. Preethi Kandhalu’s article on the physical and psychological effects of cortisol suggests that the levels of cortisol in people with Major Depressive Disorder declined after three months of practicing yoga, pointing to the conclusion that yoga can indeed encourage good mental health.
Tip from the Zebra Mom:
Hypermobile Mama, please talk to your physiotherapist when considering Yoga and Pilates. These practices may cause hyperextension of the joints which can increase laxity and/or cause dislocations/subluxations.
Finally shedding a reputation of hippy-dippy voodoo, the neurological data behind meditation and positive physical changes to the brain speak for itself. The brain is a muscle, and like other muscles in the body can strengthen with tools and exercises. While many areas of the brain are active during meditation, data shows the significant difference in the hippocampus between meditators and non-meditators. The hippocampus affects stress and emotional responses. These sorts of physical changes can have a positive effect on stress levels. There are many ways to begin a meditation practice. Explore guided online tracks or meditation apps like Headspace. You could even practice an individual exploration of a particular mantra or affirmation.
Tip from The Zebra Mom:
Meditation is also useful as a way of pain management. This study shows there is some evidence for the existence of a non-opioid process in the brain to reduce pain through mindfulness meditation.
The vision of becoming a pincushion may be off-putting. Yet, the ancient practice of acupuncture has stood the test of time as a method of physical and mental release. A new study explores the science behind what exactly is happening in the body to relieve anxiety.
Tip from the Zebra Mom:
Some study shows that acupuncture may be effective in relieving chronic pain. A trained, certified professional should always be sought but only after you’ve spoken to your doctor.
Get your Groove on
Music makes us feel. Whether it’s a favorite song in the car or soft background music, the link between the sound of music and the effect on our cognitive abilities and functions is a massive field of research. Instead of scrolling through your Instagram feed before you fall asleep, play some soothing tunes and let yourself drift.
Tip from the Zebra Mom:
Play music that inspires or motivates you. My own personal mood-boosting songs are Sia’s ‘Elastic Heart’ and Rudimental’s ‘Not giving in’. Blast them and sing them loud! Further research should arise, but there is some correlation between music and pain relief.
Make Sleep a Priority
Without an adequate amount of shut-eye, many other efforts at wellness are going to seem unmanageable. Implementing a regular yoga and meditation practice often leads to an improvement in the quality of sleep. There are further steps to ensure our bodies are getting enough rest. Explore alternative remedies such as aromatherapy. Using lavender or peppermint essential oil before bed can relax the central nervous system. This results in ease of physical aches, anxieties, and tension.
Tip from the Zebra Mom:
If you’re a new mom, you should consider co-sleeping with your baby. When practiced safe way, this practice allows mom to get more sleep. Studies show breastfeeding moms who also co-sleep get more sleep than those who don’t. I know, that in the early days of being a new mom, co-sleeping allowed me to get a full night sleep. Studies also show that children who sleep close to their parents tend to be more content and sleep better. See Infant Sleep Information Source for information about how to practice safe sleeping. Furthermore, you will also find information on normal infant sleep patterns. See Infant Sleep Information Source
Spend Time with Yourself
A little pampering goes a long way when it comes to affecting mood and sense of purpose. One study investigated the influence of self-esteem and optimism as measured factors before, during, and after pregnancy, with optimism associated with fewer symptoms of depression during pregnancy and up to six weeks postpartum, with self-esteem correlating with lower depression along with all points of the pregnancy. Cultivating self-love and existing as your best self can make it easier to radiate the same level of love outward. This love can be for your children and also complete strangers.
Tip from the Zebra Mom:
A pamper session doesn’t have to involve leaving the house. As moms with Chronic Illness, we know it can take a lot of energy going anywhere. Run a bath, light some candles or paint your nails. Even some online shopping can give you the pick-me-up you needed. Whatever makes you feel good; go for it.
About the Author
Guest post by Marcus Clarke BSc, MSc. from psysci.co. His blog focusses on psychology and science.
Marcus has Bachelors (Hons) in Psychology and a Masters in Health Psychology. Marcus has experience working in a Psychology department within the NHS. He is currently working in the health and social care sector. Marcus supports adults and children with learning disabilities.
You can contact Marcus via email firstname.lastname@example.org or twitter: @psysci_co_uk
If you would like to guest post on The Zebra Mom, email email@example.com
The Eighth Amendment affects people who have the ability to become pregnant In Ireland.
The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.
Last week we discussed how the Eighth Amendment affected women during pregnancy and birth. This week we are going to explore how the Eighth affects people who are sick and have the ability to become pregnant.
Fellow blogger, Cripple, Baby! has kindly allowed me to share her story. Catherine like me, has Ehlers Danlos Syndrome.
How the Eighth Amendment could have affected Catherine with Cancer:
For me, the Eighth Amendment brings to mind of when I was diagnosed with cancer, back in 2013.
No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed.
One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over. A simple “I’m sure you’ll be ok” was all that was given in this respect.
My period was a good sign
Something I realised was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren’t granted free by the HSE, and perhaps some doctors just see it all as a bit “icky”? I really have no idea. In fairness, I never pushed the issue. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow was a good sign at least.
No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant during my treatment.
Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time obviously, that would be insane. But as we all know, even with all the contraption in the world shit happens.
In this scenario the woman has two choices (in other countries) continue the pregnancy, reduce your treatment (or not, but it would be advised) or plan a termination, in order to give yourself the best chance of survival. Neither option is easy. Yet women make these choices for themselves, all around the world, every single day. And we trust they know what is best for them. Neither case in this regard deserves judgement, they are and should be, case-by-case decisions made by the women themselves and fully supported by both medical staff and loved ones.
The hypothetical foetus
So when I was diagnosed with Hodgkin’s lymphoma in 2013, I was quickly informed of what would happen if I became pregnant. They would reduce the treatment in order to give the foetus the best chance of survival. At first this seems like just good advice, a reassurance that if needs be they will do what they can to help me. I am a young woman of child-bearing age, so it’s all relevant. But this mantra was repeated again and again during my treatment, by various medical care professionals. Many a conversation about saving the life of my hypothetical foetus. To get the point across that in this scenario, in this country, I would have no choice.
It’s something I’ve looked back on often. Sometimes with amusement, but mostly with dismay. It just makes me feel very uneasy. My life is more important than a hypothetical, or real, foetus. The life of a fully grown adult is not equal to that of a zygote. Before we even bring choice into it, that’s simply the case.
As heartbreaking as that can seem in situations where a pregnancy is not viable, or comes with a hefty price. This statement excludes cases of late-term “abortions” due to fatal fetal abnormalities, as we all know that late-term “abortions” are simply not done for the craic (in any country) and any further explanation on that would frankly be stupid and I hope unnecessary. When a matured, wanted foetus is dying in its mother’s womb, it’s horrendous for the parents. It’s not something to be mocked, or mislabeled. And it certainly isn’t something Irish parents should have to deal with, alone, in a different country. A financial burden on top of saying goodbye to their child in peace.
Luckily I finished my treatments without any accidents. But shit does happen. It happens to Irish women each and every day. So I have to put myself in their shoes. What would I have done? Could I have been able to access medical support after coming home from England? Would I financially be able to even afford a termination? Is it possible that I would I be held by the state if I informed my doctors of my wishes? Would I even feel comfortable telling loved ones? Looking at such a broad issue, simply in my own terms, my own real experiences, just does not cut it. And it shouldn’t cut it for anyone.
To truly look at this Eighth amendment and the restrictions it poses on Irish women rationally, we must not only look at it from how our own lives have gone to date. We must ask ourselves, “what if…?”. This is only one, small scenario that I can place myself in, even though it did not happen to me. Even though (under normal circumstances) I really don’t think I would ever choose an abortion in my life time. There are so many scenarios; so many stories that are not our own.
Abortion isn’t always an easy option but many have no regrets and know it’s the right choice for them; for all sorts of reasons that are none of our business. Many also have no choice.
No one can 100%, truly say “I will never terminate a pregnancy”, even when it seems completely unthinkable in our current lives shit happens.
How the Eighth Amendment could affect Laura with Psoriasis:
I have psoriasis. I’ve had it since I was nine, I’m 30 now. It had peaks and troughs but since being an adult it has more or less stayed the same. It’s not just flaky skin that’s itchy. It’s unsightly red blotches all over. The Psoriasis is on my face, breasts and bottom. No where is safe.
It has affected my self-esteem greatly and at times my physical health when it cracks and bleeds. When I was 15 it was so bad on my arms that I couldn’t raise them further than my chest and my mother had to dress me. That was pretty humiliating.
I’ve been called several names because of it ‘scabby’ being the most popular and nothing makes me retreat to being a child who wants their mother, than an adult who stares.
I’ve had several treatments and have tried many diets and none have worked for an extended period of time. The most relief I had with these treatments was three months.
Hope for relief
So, this year I was informed I was a suitable candidate for a series of injections. These are relatively new. The injections work by changing how your immune system produces skin cells. Psoriasis is an overproduction of skin cells.
One of the main side effects is that my immune system will be lower than the average person. I will be more likely to get a cold/flu and it viruses and illnesses will be harder to shift.
The biggest warning I got was not to get pregnant. I probably wouldn’t carry full term and if I did, we both would have lasting damage. I’m a married woman and perform my ‘wifely duties’ as a certain religious organisation calls it. We use two types of protection but nothing is 100% safe.
This is why the Eighth Amendment needs to be repealed. If I were to get pregnant it could be very detrimental to my health and the foetus. I also know, from having relatives with these conditions, that I couldn’t care for a special needs baby, while ill myself. It would be a likely scenario if I were to have a baby.
My injections are life long, so I can’t get pregnant at all. My health is more important than a foetus. I have a husband and family and friends.
If I were to get pregnant, I would be devastated, particularly as I use two methods of contraception. I would have to arrange an abortion and that would be very upsetting.
Nobody likes having to get an abortion but I firmly believe my health and well-being are more important.
I also suffer with my mental health and to be honest, I’d be afraid that pregnancy would make it worse, due to the impact it would have on my life. My physical and mental health would be put on a back burner if I were to get pregnant under the Eighth Amendment.
I know I would be pressured to put the foetus’ health and needs before my own, even before it’s born. Sometimes I struggle to care for myself, never mind a helpless baby.
People have asked me if I can come off my medication to have children. The truth is, I don’t want to. It may be selfish but I want a quality of life for myself and not having children is a side effect of that. I did initially grieve before starting treatment but now I am fine with that decision. A door has closed but a new one has opened and so far, I haven’t looked back.
During my last pregnancy, I was in a wheelchair from the first trimester until my daughter was three-month old. Having EDS, there are some risks involved in pregnancy. You are at risk of pre term labour, miscarriage and of hemorrhaging, to name but a few issues. I lost my son’s twin at about seven weeks into my first pregnancy.
Almost immediately into my second pregnancy my pelvis became an issue. Symphysis Pubis Dysfunction (SPD) is a pretty common condition during pregnancy; but not early on in pregnancy. Most women complain of the pain in their groin, back, legs and hips in their last trimester and usually manage with crutches.
The foetus growing inside me was just two inches when my body turned against me. The pain was unreal. I have put up with dislocated joints-even popping them back in myself but this was something else. I could not physically walk without crying. Some days I did try not to use it in order to stay mobile and avoid muscle wastage but even then I had to use special crutches. For days after I attempted walking I would be stuck in bed screaming in pain. Before pregnancy, I was on opiates and they barely took the edge of my chronic pain.
My waters broke weeks before I was due to give birth. I went into the maternity hospital and told them I felt a pop and a trickle. So they examined me and came to the conclusion that my waters hadn’t broken. I went for an appointment in the high risk clinic a couple of weeks later and mentioned baby had been a bit quiet. So they scanned me and lo and behold, half of my waters were gone. So I was induced that night.
I was put on IV antibiotics to prevent infection. We were both pretty lucky we hadn’t picked up an infection with my waters leaking.
Several hours later I gave birth but then I started to feel very unwell. I was vomiting and passing out. I was having a massive bleed and the midwives were calling for blood. Luckily, they stopped the bleeding on time and I lost half my blood volume. It took a year and high doses of iron for me to feel “normal” again. The whole experience traumatised me.
Three months and a lot of hard work and I got myself out of the wheelchair for the most part. I still have to use it if I am out of the house for an extended period of time. My pelvis is almost always dislocated and affects my back and legs as well.
Pregnancy could leave me permanently immobile
Progesterone plays a massive role with my condition as it causes my joints to become even more lax. If I were to get pregnant again, it is very, very likely that I will not be so lucky (not so much luck as I put in a tonne of work) to get out of the wheelchair. I have been warned not to get pregnant again. The contraception I am on at the moment but it will have to come out as it is affecting my health. I can not have any “unnecessary” surgery like a tube ligation or hysterectomy. A C Section can not be performed without it being an emergency because I am susceptible to infection, stitches don’t hold well and I would suffer with chronic regional pain on top of the wide-spread chronic pain I suffer with now.
I have two children. I have a husband who is my carer. He does almost all the cooking and the cleaning while looking after our two children and a budding business. There are days where he must help me get out of the shower and even dress me.
If I were to have another baby, I would never have a “good day”. I would be in even more pain than I am in now. An American doctor who used to be an Oncologist has stated that EDS would be one of the top three most painful conditions to live with.
Abortion would be the best decision for our family
I can not put myself in more pain. It is not possible to put my family through more than what they already experience. I have to be a mother to the children I have now
. Ehlers Danlos Syndrome is an inherited condition. My children have a 50/50 chance of having this condition. Both our son and daughter have EDS. Our two-year old daughter is more affected than my son-suffering three dislocations already. I can’t subject another child to this life of pain. I will not. Accidents happen and if I were to get pregnant accidentally, I would have to have an abortion no ifs or buts.
Travelling for any amount of time leaves me bed/couch bound for days. Stress causes my symptoms to flare. If I should need to have an abortion, I should be able to go to my local hospital, have the procedure and go home that night to my own bed, to be surrounded by my family. I should be able to be open about what had just happened and not hide it in shame. I would be making the right decision for my family. The family that is living and breathing.
Up until pretty recently, I was anti choice. It was when I had to travel to the UK for treatment not available in Ireland that my mind was truly changed. I empathised with all the Irish women who had to travel. I cried at the thought of these women being alone because their partners couldn’t get the day off work or because they were raped and didn’t want to tell anyone.
The Eighth Amendment needs to go.
I’m fighting for repeal of the Eighth Amendment not just for me, but for my daughter. EDS gets worse when a girl hits puberty and most of the time, during pregnancy. If she’s already this affected now, it does not bear thinking of how the condition will manifest later on in life. She needs to have bodily autonomy. This condition takes away so many freedoms over our bodies, we do not need anything else taken away from us.
I have started a Facebook page, Disabled People for Choice in Ireland to show the world that despite what the anti-choice might think, there are those with disabilities who believe in choice, no matter the situation.
When you’re child is seriously hurt you can feel so helpless. You might feel guilty for not having a sharp eye on your little one when they injure themselves. If you have a faulty genes and a genetic condition that you’ve passed on to your child, there’s an added guilt.
Last Saturday two year old Ollie Pops N’ Clicks was playing happily with her Dad. We had a lovely day up till then, hubby and I were celebrating our five-year wedding anniversary. My Dad cooked us a beautiful lamb dinner and after we retired into the sitting room in front of the stove. Despite having a pain flare, I was content. That is until Ollie started screaming.
She was pulling on her Daddy’s clothes and then all of a sudden her arm was hurting. Nobody could touch it and if we tried to move it she cried. Hubby knew immediately that we were faced with something that happened in 2015. Ollie was just seven months old then. Her elbow was dislocated. She was behaving the same way she did that cold night in November of 2015.
So, we had to leave Bendy Boy with his Granddad for the night as we sped up to the Accident and Emergency Department (A&E) of the University Hospital. She fell asleep before we even made it out of town. I thought maybe she was OK now but when I touched her arm she woke up screaming.
What is a 45-minute journey felt like hours. We arrived into A&E and we were surprised to see how quiet it was for a Saturday evening. Then again, it was still pretty early. The drunks and those involved in fights wouldn’t be in for another few hours yet.
At the hospital
After we checked in, we sat in the waiting area. Looking around I saw a teenager with their arms in a sling, an old man with bandages around his head and another man with a black eye. I was worried that this scene would upset my already frightened two year old. You could tell exactly what was wrong with these people. All you could see when you looked at Ollie was a little girl with a sourpuss face protecting her little arm.
Just like before, the Triage nurse saw us fairly quickly, when we explained what we think had happened and that I have Ehlers Danlos Syndrome. This is a result of my faulty collagen genes. We were taken into the ward.
The last time Ollie was seen in A&E at just seven months old, she had to have an X-Ray. It was torture for us both. I had to move her tiny little arm around in different positions. She cried, I cried. This time however, there was no need to X-Ray because of her history.
When I told the on call doctor that I had EDS, he asked could he have a look at my hands. He bent my fingers back and pulled on my skin. He nodded and turned to little Ollie who was finishing off her second ever dose of painkillers. In two years she’s never been ill enough to need any type of medication. The only time she’s had Calpol is the first time she dislocated her elbow.
Like a punch to the stomach
Anyway, he attempted to take Ollie’s hand but she was petrified. He did eventually manage to get it and within seconds. He confirmed it was dislocated and he said it’s pretty safe to say that my beautiful daughter has EDS. She has inherited my faulty genes. It was like a punch to the stomach.
We knew this since pregnancy but every time I hear a doctor say it again, the guilt gets to me. Ollie is not officially diagnosed with EDS. We hope to rectify that soon just in case social services do get involved during a future trip to A&E.
Like nothing ever happened
Within forty minutes of arriving at A&E we were out the door. Ollie was back to her old self again and I’m pretty sure she was on a sugar buzz after that medicine. She kept talking about how the doctor fixed her and that she was all better now. We arrived home and the three of us sat on the couch to unwind after a stressful couple of hours.
Ollie climbed on me and fed until she was ready for sleep. She then sat up and threw herself on to the couch. I watched her sleep for awhile. She looked so peaceful and you’d have never had known she was in agony just an hour before. We carried her into her new room and didn’t see her till morning. It really is amazing how resilient kids are and that does make it a lot easier to live with a condition like EDS.
I know I cannot control my genetics and that I shouldn’t blame myself for Bendy Boy’s diagnosis and Ollie’s inevitable diagnosis. But, I can’t help it; this illness comes from me. If Ollie is dislocating this early on in life it doesn’t bare thinking what will happen, as she gets older.
What does the future hold?
When she starts playschool, when she’s old enough to play outside with friends, when she climbs a tree for the first time. Then there’s puberty. The majority of girls with EDS experience an increase in symptoms when they reach puberty. This is because the hormone, progesterone wreaks havoc on our bodies. Progesterone makes us lax. It’s why girls and women suffer more during their periods and in pregnancy.
How many more times is she going to be in hospital with an injury? Is she ever going to work or have a normal life? These questions whiz around my head. I try to say to myself what I would say to anybody in this situation; cross that bridge when you come to it.
Overcoming the guilt of faulty genes
But, I will eventually overcome this guilt. How? Because I know I am the best person to get my children through what they will face later down the line. I know what they need, who they need to see and where I can take them to make all this happen. The fight for access for appropriate medical care of which there is none in this country will be my biggest challenge. I will take them to the doctor or hospital as many times as they need and I will do it with empathy.
They will be believed when they tell me they are in pain, because I know what it’s like not to be believed. Not being believed by my parents, by friends and by doctors affected me greatly and I still carry that pain around with me. That pain can be just as great as the physical pain my genes have caused me. An old friend once said that she would rather face a pack of rabid Rottweiler than a parent who wants to protect and fight for their children. If you mess with my kids and their health, I’ll go through you for a shortcut.
Be your child’s champion
Having EDS myself makes me the best advocate for my children. Any patient with a rare disease becomes his or her own expert. I will now be the expert for my children too. From how their genes work to the treatment they need, I will be their champion.
It is a great comfort knowing that they will always have each other to lean on for support. Even when I am not there anymore to fight for them, they can fight together.
So, for anyone out there who is feeling guilty for passing on their crappy genes, know this; it is not your fault. I know more than anybody that it’s hard not to. Take a leaf out of my book; take that guilt and turn it into something positive. Raise awareness of the condition, fight for proper treatment, do everything in your power to make your child’s experience with their condition better than what you experienced.
Being a mom is hard. Really freakin’ hard. You have sleepless nights that go on for years. Then there are snots, wee, poo, endless requests, and endless questions. Stresses of school, work, childminding, and meal prep grind you down. I could go on and on. Now, imagine being a mom with all of these stresses and then add a chronic illness into the mix. For the most part, it makes no difference to your kids if it’s all they know. You can be the mom who spends all day resting on the couch or in bed for hours and your kids will still think you’re awesome.
You can be the mom who spends all day resting on the couch or in bed for hours and your kids will still think you’re awesome.
Well, my kids do and I would consider myself a pretty mediocre mother. But I’m often told I’m too hard on myself.
I do cut corners-daily. I’m disorganised. I put things off. I loose my shit regularly. My chronic illnesses are a mix of physical and mental ailments. EDS, POTS, Autonomic Mediated Syncope, anxiety and depression all plague me. Sometimes separately but most of the time they join to create a storm of symptoms.
While most mothers will make a home cooked meal, I depend on my air fryer to cook quick and convenient food. Once a month I do manage something home cooked and special like my Crispy Chinese Pork or my Lemon Chicken Pasta. But for the most part the kids live on chicken or fish goujons or chicken and pesto pasta. Daddy does the majority of the cooking but with a budding business and all the other household chores, he simply doesn’t have the time or the energy to be making food from scratch.
“Why don’t you do meal prep and freeze?” I hear you say. Yep, I get these notions all the time. But then fatigue plagues me or my wrist pops out of place from chopping. In a town of 5,000 people, we have approximately 12 take aways. Wouldn’t it be great if there were a meal on wheels service for those with chronic illness? Or wouldn’t it be great if the village mentality still existed where the whole community helps out those who are struggling? Wouldn’t it be great if we were provided with balanced dishes that tasted just as tasty as a burger and fries from the local chipper? There’s a business idea right there.
In my mind, I’m supermom. I come up with all these Bree Van de Camp type ideas like cooking breakfast muffins or making clothes for the children. In reality, I’m lucky to get dressed and put my make up on once a week. Most people don’t have to decide on whether to wash and dress themselves or feed their children. Most people don’t have to decide whether to cook a decent meal or to stay awake long enough to make sure the children don’t kill themselves.
I’m not a “fed is best” advocate, far from it. I truly believe what we feed our children is of the utmost importance. The science shows that what we feed our children in infancy and childhood directly affects their long-term health and eating habits as they grow into adulthood. I know we could make better choices and soon I hope to collaborate with some foodies to offer some recipes that are suitable for the whole family and that are “spoonie” friendly for parents.
So now I have had that little rant off my chest, it’s time to make things a little lighter. Here are some of the signs of being a mom with a chronic illness.
You spend a good portion of your day in pyjamas
It’s probable that you own more pairs of pyjamas than actual clothes. You figure, I don’t need to go anywhere today so what’s the point in spending spoons on getting washed and dressed. But, when you do get washed, dressed and put make up on your good days, you feel more human. Sure you might be exhausted from prepping yourself for the outside world but it does wonders for your mental health.
You get takeout more than you should
Sometimes when you literally can’t move during a flare up, you can’t get up to pee, never mind having to stand at the kitchen counter and then dealing with the heat of the cooker. But when you manage to make a delicious home cooked meal, you feel like Gordon Ramsay (minus the constant swearing…mostly).
Your kids get full meals while you live on crackers and coffee
You do your best to nourish your kids. You’d rather spend your spoons on making sure they are well fed. You get so nauseous or fatigued that the last thing you want to do is eat. So you when you are feeling peckish you’ll grab the first thing that comes out of the fridge or cupboard. It’s taken me years to figure out how to eat healthier snacks that have some form of nutrients. I do like crackers on days that I’m nauseous so I buy pre hummus for some protein. A pre-made salad or a handful of nuts are a light handy snack that will give you the boost to look after your munchkins.
You say yes to your kids even when you shouldn’t just to have some peace and quiet
Saying yes when you should to all sorts of things that you know you shouldn’t. You just want them to be quiet for five minutes. We simply don’t have the energy to argue when we are in pain or fatigued. Don’t beat yourself up when you say yes to that extra packet of crisps or chocolate.
You say “not today” frequently
We say yes to the things we shouldn’t and no to the things we should. You would love nothing more than to take the kids out or let them have a play date in your house. The guilt is real. You want to give your kids all that they desire but sometimes it’s better to save your spoons for a day you feel better. Then you can all enjoy yourselves. There will be a day you can yes to that playdate or day trip. Rest up today for what you want to do tomorrow.
You manage to wash and dress the kids while you look like you’ve been dragged through a bush backwards
Your kids are dressed beautifully with shiny teeth and brushed hair almost every day. They could pose on the cover of a shopping catalogue. You on the other hand, you look so dishevelled that you could easily pass for someone who’s just found her way to civilisation after being lost in the woods somewhere. If I need to look presentable while still feeling comfortable I put on my sports bra (cause under wired bras are the devil) and a jersey cotton jumpsuit like this one from Boohoo. I feel super comfy but I look super chic. Plus jumpsuits are a great time saver-no need to pair up tops and bottoms. Jersey cotton is a chronic illness sufferer’s best friend.
TV is your best friend
You’ve probably watched everything there is to watch on Netflix. When the kids are at school and you’ve managed to one productive thing that morning, you find yourself in need of a rest. If you’re anything like me; reading a book during the day will simply not do. Two pages and I’m out like a light. TV is always there for you-no matter what. You can be transported to another place and forget, just for 30 minutes, that you’re on the couch involuntarily.
TV is always there for you-no matter what. You can be transported to another place and forget, just for 30 minutes, that you’re on the couch involuntarily.
As soon as you’re diagnosed with a chronic illness you should automatically have a free subscription to Netflix. Netflix and chill and pills for us! Oh my!
The Internet is your social life
Going out for coffee, going for drinks with the girls is a rarity. People used to come by to have a cup of tea and a chat but they’ve stopped coming. Since you’ve been diagnosed with a chronic illness, lots of things have changed. So social media becomes your social life. You can connect with others in the exact same situation with just a couple of clicks.
Even though you may have not met these people in real life, you feel super close to them because they know exactly what it’s like for you.
We do have the tendency to get lost in social media though. I noticed this about myself recently so I signed up for a creative writing class. It’s just 2 hours, one night a week. Nothing to heavy and I find writing a good therapy. With so much life experience, I’ll have a lot of inspiration to draw from.
With chronic illness, the housework is a constant stress
You would love nothing more than to move ever piece of furniture out of the way and get cleaning the collection of food, dust and small toys. The pile of laundry is giving Everest a run for it’s money and no matter how hard you try, you just can’t keep up. Sometimes you wonder if you’ll end up on an episode of Hoarders. But, in reality, your house is probably not as bad as you think. In fact, you could probably walk into almost any family home and see the same messes. If you do feel overwhelmed, check out my blog about household products that can help you manage your household with a chronic illness.
When you do manage to get to the bottom of the laundry basket you’re not a domestic Goddess, you’re a domestic badass. Celebrate with cake and a rest. That’s an order!
When you achieve something you feel like a total rock star
You’ve woken up and it’s one of those rare days you feel semi human. You do a few loads of washing; you get dressed and even put on a bit of make up. Then you prep dinner while the kids are at school. It’s all done from scratch and smells amazing. Even organising your meds is a huge achievement for you. Whatever you managed to do today, it’s an achievement and needs to be celebrated.
Simply getting up out of bed and leaving the house for a cup of coffee with friends is something to be proud of. Those days can be few and far between so when it happens, you appreciate so much more.
Maybe you have a chronic illness but manage to live normally, that doesn’t mean you are not struggling. It is so important not to compare yourself to others. I personally don’t believe in thinking I’m sicker than anyone else. Everyone’s illness is his or her own. We all handle things differently. A lot of the time, fear of pain and fatigue and of course mental illness as a result of the physical illness can hold us back. No two stories are exactly alike.
So celebrate your achievements no matter how small they may be. Try not to dwell on all the things you couldn’t get to do today. Focus on what you did manage to do, even if it was “just” getting dressed.
*The Eighth Amendment affects people who have the ability to become pregnant In Ireland.
The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.
It’s more than just abortion
But the Eighth Amendment also affects pregnant people who choose to stay pregnant. The big issue I personally have with the way the Eighth Amendment is being portrayed in the media and by the “pro life” side. It is that it’s made out to be solely about abortion. The Eighth Amendment is so much more than the issue of abortion. This week, as the first part of this series, we will look at the issue of consent during pregnancy and birth.
According to the Health Service Executive’s (HSE) National Consent Policy
“because of the Constitutional provisions on the right to life of the unborn [Article 40.3.3] there is significant legal uncertainty regarding a pregnant woman’s right to [consent]”.
This section of the HSE’s policy allows the HSE to apply for injunctions from the High Court. These injunctions compel pregnant women to receive treatment when they have not consented. Sometimes, what the HSE are seeking injunctions for is not seen as best practice by international standards.
In Ireland pregnant people are frequently induced early without any medical reason. They are cut without consent, medicated without consent and not properly informed of the procedures forced upon them. This issue of consent was highlighted in the 2014 Association of Improvement in Maternity Services (AIMS) Ireland survey of 2,836 women, where less than half of all respondents said they were given the opportunity to refuse consent to tests, procedures and treatments. Less.Than.Half.
Strike 4 Repeal protest Credit Siobhan Venables
My own story:
Looking back at my first birth, I was affected by the Eighth Amendment. Induction was to be scheduled just nine days after my “due date”. It was my wish to go the full fourteen days but my consultant said that was not hospital policy. I was afraid to argue because I had seen stories of women brought to the high court and even threatened with social services because they went against hospital policy. Frustratingly, the midwife who began my induction said by the way I was looking, I would have given birth on my own a couple of days later.
My second birth was quite similar. I wanted so badly to have a home birth but just seeing I had a pre existing condition made me an unsuitable candidate. The midwives knew I wanted to do this so badly. They hadn’t even heard of Ehlers Danlos Syndrome so why was it a straight up no without a consultation with the head of the Home Birth department? Now, having a hospital birth was the best option in the end but I was not given a choice from the get go.
No informed consent, no wishes respected
I specifically told the hospital I did not want an epidural. I was not to be offered an epidural. If I wanted, I would ask for it. Did that happen? Of course not.
The midwives wore me down, they kept insisting and being in pain and exhausted, I gave in. I had no choice in either of my labours. I was not informed that induction would be far more painful than a natural labour or that it would be far more lengthy.
There was no indication that I would be going through my first birth alone because of the Swine Flu epidemic. I was given my orders and at 22, I just went along with it. I was not one to kick up a fuss (that’s changed now). After all, doctor knew best. Or so I thought.
For the following six months after my first birth, I had nightmares every night about being induced and being alone for the majority of my labour. My husband was only there for the very last bit of my labour and for the birth. He was with me for the entirety of my second, which made the experience far more positive.
I was told by a midwife recently that if I had been in the UK, that even with my EDS, my choices would have been respected after I had been informed about any risks.
I spoke with other Irish people with chronic illness/disability about how the Eighth Amendment has affected them. This blog has been a long time in the making because I wanted to do justice to their very important stories. Stories that show the Eighth Amendment needs to be repealed.
*Names have been changed to protect the identity of people affected by the Eighth Amendment:
The Eighth Amendment affected Jennifer with Ehlers Danlos Syndrome:
Initially I hadn’t wanted to give birth in a hospital. My ideal birth was a water birth in the comfort of my own home. I wanted to share a bed with my partner the night our child was born. I hated the idea of him being sent home on his own after helping me through everything.
Unfortunately, I was told what I wanted wasn’t possible. I was told my BMI was two points higher than they would like. Although I never had any complications associated with high BMI that was that. The water birth was not going to happen in the hospital. The head midwife told us the HSE had padlocked an entire wing with brand new birth pools and my obstetrician admitted it was partly because disinfecting the birth pools had been deemed too expensive. I settled on an active birth, low lighting where possible, two birth partners (which I fought for), quiet voices and positive language. There was to be as little intervention as possible.
Jennifer’s Birth Story
At 41 weeks I was brought in for an induction, we had started sweeps a couple of weeks before, but I had excess amniotic fluid so our baby was essentially bobbing and couldn’t engage for long enough to get labour going by himself.
It was a Thursday I was brought in, I was given the max dose of hormone gel on my cervix between then and Saturday. I had contractions and ironically was allowed to go and have a normal bath in my early stages of labour.
The birth I didn’t want
On Saturday I was told my waters needed to be broken. My mother and partner were there with me. I was brought into a procedure room; the ones that don’t have a full bed but instead something closer to a lounge chair. The air con was on and loud enough that we had to raise our voices to be heard. I was told it couldn’t be switched off. When they broke my waters there was meconium in them. The midwives were starting to panic. We were given an hour to get my labour moving or I would be put on a drip.
I asked if I could send one of my birth partners to get my birthing ball from the car and was told they would give me one instead. So I went to the bathroom that was through the maternity triage ward. When the birthing ball finally arrived it was too short for me and under inflated. It far from ideal as I had a badly misaligned pelvis that went untreated throughout my pregnancy and never fully healed.
I was put on continual monitoring, I tried to ask if there was another way as this would prevent me from moving much and I was told we would see. This was about 1pm and it didn’t come off the monitors until after I gave birth at 5 am.
Emotional and physical scarring
It took 5 people to get an IV line into me. Two midwives and two doctors attempted and failed. Eventually an anaesthetist was successful. All of them tried multiple places. They had no issue finding veins but my skin was too stretchy and tough for them to get the plastic part of the line under my skin. Three years later I still have multiple scars from their attempts.
We were left with a midwife to get my labour going once all of that was done. She was very matter of fact with me and somewhat lacking in bedside manner. She left the room for something and I cried.
I already knew even my most basic wishes weren’t going to be taken into consideration. It was rapidly turning into the labour I was hoping to avoid.
It was rapidly turning into the labour I was hoping to avoid.
My tolerance for pain is high. I’ve walked around on a subluxated hip and fractured tailbone for three weeks without pain medication. I cope quietly until I can’t. Because of that, my drip was turned up the max amount at every interval. The midwife who relieved the previous one was amazed I was already in the highest dose when she came in. I ended up having one breath between contractions. I was no longer coping well and kept saying I wanted to go home. They checked my dilation, 3cm. I knew I wouldn’t have the energy to get to 10 at this rate. Determined not to have a C-section, I gave in and asked for an epidural.
Before the epidural was administered and we were waiting for the anaesthetist I asked to go to the bathroom. I was told I wasn’t allowed because of the monitors and she would give me a catheter instead. It felt very unnecessary and it hurt.
Hurt, starved and threatened
I was cathetered three more times. The last two I wasn’t even asked, I didn’t need to go, she had to press hard on my stomach and force urine out of me.
When I did get the epidural it only worked on one side of my body, it took 4 hours to rectify. Apparently because I’m a larger lady (I’m a size 18).
Breakfast was served at 7am. My waters were broken before lunch. I was denied food for my whole labour in case they needed to do a C-section. I went about 23 hours without eating.
C-section and episiotomy were threatened against Jennifer.
I didn’t end up needing either and I didn’t have any tears from giving birth. I did get two minor tears either side of my urethra, where my clitoral hood meets my inner labia.
Medical trauma affected my sex life
I discovered about a year later I also had a tear under my clitoral hood where it connects to the clitoris.
The midwife who pushed either side of my vagina as my son was crowning caused this. It affected my ability to climax for about two years.
These were caused by the midwife who pushed either side of my vagina as my son was crowning. It affected my ability to climax for about two years.
“I did not give consent”
I had wanted to do delayed cord clamping but due to the meconium that wasn’t an option and I’m ok with that. It was my wish to let my placenta to come away naturally. Once my son was delivered they took him to the other side of the room to clear his lungs and check him over. Meanwhile I was given an injection to hurry up my placenta without my permission, which caused a massive bleed, they thought I was haemorrhaging initially. I understand this may have been necessary but there was no discussion, explanation or warning about the injection. I did not give consent.
Thankfully I have a happy healthy child and physically I have more or less recovered. Emotionally and mentally less so. I will not be giving birth in a hospital again unless I have complications during my pregnancy or labour that put my future children or me at risk.
How The Eighth Amendment affected Sarah with Crohn’s Disease:
I have Crohn’s disease, and I had a very rocky end to my pregnancy.
In the third trimester I developed pneumonia, and began having a massive flare. I was given great treatment in the maternity ward and went home.
At home I was spending days on the couch or running to the toilet. I had little energy and each trip to the doctor I was told that once baby arrived they would see what they could do. The main thing was plenty of rest and not losing weight, which I did a good job of- I was huge!
My previous baby was quite small, 5lb 10. I’m pretty petite myself, so I really wasn’t worried when they said this baby was small. I went for weekly scans, and every week baby was there moving away happily growing quite slowly but no signs of anything amiss.
She had an almighty strong kick so I felt pretty confident. I know these things aren’t perfect but one day the consultant called me in. She started tossing around terms like “hospital won’t accept liability”
‘hospital won’t accept liability’
and when I asked if there was something wrong, she said she couldn’t guarantee this until baby was here.
Something about the way she spoke made me feel like there was something wrong. Apart from my own illness, my vitals, baby’s heartbeats, scans and everything had been going well. I asked her when did she want to do the induction (I didn’t think I had a choice or was giving consent by the way, this sounded like a life or death matter) she said tomorrow.
Without much warning she told me to lie in the bed and said she was going to do a sweep. I was 36 weeks. The sweep was agony in my already inflamed pelvic area.
Sarah’s Birth Story
The next morning I was hooked up to the drip and ready to go. All was going well for the first while, I had strong contractions but I was up and moving about. After a while nothing still, so they turned up the drip and I had even more intense contractions.
Then my Crohn’s kicked in and I had a lot of tummy trouble, and a massive onset of fatigue. I’ll spare the details but I’m usually one to laugh about this and make toilet humour. Not this time. I began to have spasms, which I get when things are bad.
“Don’t be a Martyr”
That was making me push, except now was no time to push. The nurse decided that to spare my body, because in her words ‘baby doesn’t want to come out’ they would turn the drip up again to full.
After this I was told not to be a martyr and have an epidural. Admittedly I cried because none of this my choice.
Admittedly I cried because none of this my choice.
I had a natural birth in the past and knew what my body was capable of. This however was my biggest nightmare to be so ill and scared and having things forced upon me.
I very narrowly escaped a forceps delivery by sheer will. The epidural helped some in the end and all the pushing was stage was over and I held my beautiful girl. She was perfect, as I knew she would be. She was content and happy and safe in there, and could have stayed a few weeks longer.
That’s not where it ended for me though, some time after I suffered faecal incontinence. It’s been an ongoing issue since. My specialist reckons I should not have had the procedure.
A slow birth wouldn’t have put that strain on me, or a Caesarean if they genuinely felt there was a risk.
My opinion was I could have been monitored in hospital and given fluids, medicines. I think they knew there was no risk. They were just too cautious- to the point I wasn’t allowed to make informed decisions. It was all decided for me, it wasn’t my body and when it was handed back they had damaged it with unnecessary medical interventions.
No bodily autonomy
Sadly, the stories featured today are not uncommon in Ireland. I have rarely come across a birth story where a mother’s wishes were completely respected. Never has a birth experience 100 per cent positive. In 2017, pregnant people do not have bodily autonomy. People with chronic illnesses and disabilities know exactly what their body is capable of. We are stronger than most people in a number of ways. People with long-term health issues face so many obstacles on a day-to-day basis. We already have so much taken away from us because of our disabilities. When it comes to birth and labour, we feel even more helpless. The control over our own bodies is taken away. The Eighth Amendment is directly responsible. Ireland’s Eighth Amendment will continue to take away our rights until it is repealed.
Change needs to happen now
C-Section birth rates in Ireland are three times the recommended figure
. Rates of episiotomy and induction are also alarmingly high in Ireland. These facts are old news, sure, but it just goes to show how controlling the maternity system is over pregnant and birthing people’s bodies. We have a dictatorship of a Health Service and something needs to change. There needs to be a massive overhaul of our maternity system and that starts with repealing the Eighth Amendment.
Some might say I am being dramatic here but Ireland in 2017 is like living in The Handmaid’s Tale.
Pregnant people are just vessels that need to be controlled and threatened when they disobey.
In any other area of medicine, a patient’s consent must be sought. The hospital in question would have a lawsuit on their hands if they didn’t.
It’s that time of year again, folks! Yep, the summer is well and truly over. We did it! We made it through but now, a new challenge begins.
While getting the kids back to school means our routines will settle again, it also means early mornings, arguments, searching for school books, shoes, lunch boxes, pencils etc etc. Mornings in our house are well, stressful. A symphony consisting of whining, shouting, shrieking and wailing.
In addition to the energy we spend getting ready for the school run each morning, stress can also really take it out of us and even cause our spoons to dwindle before the day has even begun.
This year I am determined in making a change, not just for me and my illness but for the entire family’s mental health. Stress first thing in the morning puts everyone in a fowl mood for the day. I am trying my very best not to sweat the small things in an effort to chill out and ease stress related symptoms.
I know I am not alone when it comes to the stress of the morning rush. Millions of families across the world go through the same thing. We all wish for the same routine, to wake up refreshed, have our breakfast and coffee as a family, to all get ready individually and walk out the door on time and kiss each other goodbye as we all go our separate ways. It may seem like a scene from The Brady Brunch or The Waltons but there are some small tricks I’ve learned over the past few weeks in preparation for the coming school year.
If my chaotic morning routine sings to you, why not join me in my attempt to be more of a Zen like zebra on a Monday morning.
Sunday night, everybody dreads it. You feel you’re wasting a perfectly good day off doing laundry, sorting homework, lunches and looking for books and hearing excuses like “I didn’t have time to do x y and z”.
Below was the trigger for my Sunday night dread. The moment that theme song came on, it was time for bed and began my anxiety, fearing Monday morning.
Not exactly an ominous tune is it? To me it might as well have been the Imperial March or ‘Jaws’ music.
This year, I am going to encourage my 8 year old to help me with the laundry on Friday afternoon. As soon as he comes straight home from school, he is to get changed. This is when his uniforms will be washed. He is well able to use the coffee machine for when Daddy needs his morning pick me up so he is well able to turn on the washing machine.
I know this will serve him well when he is older. I have met so many men (and women for that matter) over the years that didn’t have a clue how to use a washing machine once they cut the apron strings and flew the nest from their mammy.
During the week, my son will get changed straight away and put his uniform away while I prepare a snack for him. If the uniform gets dirty during the week, I usually just do a spot clean. If it gets particularly dirty, a quick wash will usually do the trick.
For now, my son does not get homework for the weekend. But during the week he can spend quite awhile doing homework due to his sensory issues and poor writing skills. Luckily his Occupational Therapist is going to recommend a laptop this year so hopefully that’ll speed things up. Bendy Boy usually does his homework in the kitchen. He is so easily distracted so we will set up a designated homework space for him this year. After he gets home from school, I usually let him have an hour of rest before we begin homework and physiotherapy. Then he must do his homework and physio if he wants to go out and play with his friends or watch some TV. This has worked for us for the most part in the past but when the days are sunny (almost a rarity in Ireland), I much prefer him to spend time outdoors in the fresh air and socialise with friends. Unfortunately we have had issues getting him to do his homework after play. “I’m too tired. I don’t want to etc etc”, there is nothing to look forward to now.
It’s Sunday night. Sugar! No bread! No lunch meat! No fruit! This is also a regular occurrence and sometimes it even happens on Monday morning. Jesus, we really sound like the most unorganised family, don’t we?! If you have a chronic illness though, you’ll know exactly where I’m coming from. Brain fog…am I right? Anyway, this year all lunch box items will be organised on a Friday and rationed for the week.
Lunches can be so stressful, especially when you have a child that’s fussy or has sensory issues. One day they’ll eat sandwiches, the next day you’ll find them squished at the bottom of the bag (I was guilty of this). I am gagging at the very thought of bread in my teeth at the moment! We can’t all be like Martha Stewart or Bree Van de Camp and cook up uber healthy three course gourmet lunches (regardless of health, who has the time?!).
Give them what they like. It’s that simple. No use sending in kale and cucumber sandwiches if you’re just going to find them buried in the bottom of the school bag.
Bendy Boy gets hangry and I mean hangry. Don’t know what hangry is? Let me enlighten you. You know that feeling you get when every little thing bugs you? Someone’s breathing, chewing or you know…their very existence? Then you eat something and everything is alright again. That’s hangry. Think of the Snickers ad. Well, that’s Bendy Boy. When he’s hungry he’s in no fit state to be in school.
Obviously send in nutritious food but make sure it’s something they enjoy! Looking for some lunch box ideas? Check out this blog by awesome sister and nutritionist, Fiona.
As noted in Fiona’s blog, getting the kids involved with lunch packing the night before can take the stress out of what should be a pretty stress free job.
Like Fiona, for me, nothing could be touching and nothing could be soggy. Our poor, poor mother.
Make sure each day that you or your child empty the lunch box and clean it when they get home from school.
I refuse to have a screaming match every weekday this year. Nope. It’s not happening. If we sleep in, we sleep in, if we are late, we are late. It’s school. The world isn’t going to end. I am not going to give myself a migraine by stressing out. I’m not going to dislocate a hip running up the stairs like a crazy woman.
Between Friday and Saturday we are going to get everything ready so that we don’t suffer from Sunday night fear and we can enjoy the day relaxing or going on a family outing. So uniform will be ready on Friday and books will be sitting in his bag and by the door waiting.
On Sunday we will prep lunch and make sure coat, hat, scarf and shoes are waiting on the coat hook and shoe rail (right next to the front door).
One of the major causes of arguments in the morning with Bendy Boy is his distraction and forgetfulness. He goes and plays with toys instead of getting dressed and washed, he spends time singing instead of brushing his teeth (if he even remembers to do it). Half the time we have to remind him to do the next thing (now get your shoes on etc). So we have come up with a plan. He will have a chart in his room that will help him get ready on time in the morning. These are available all over the internet like this one . We are going to make one ourselves from card paper (spoon friendly activity) and write each task for the morning.
Put dishes in dishwasher
Put on your shoes, coat and schoolbag.
Because kids have the attention spans of well, children. We can’t rely on them to be responsible for all school prep. So have your own chart on the fridge to check off over the weekend to make sure everything runs smoothly.
Check for notes in bag about school trips or events
Make sure books and pencil case are in the bag
Have your own clothes ready for the morning
Keys ready by the front door
Check forecast. If the weather is particularly cold make sure to get up earlier to defrost your windscreen and in case traffic or road conditions are difficult to get around.
Set your alarm.
If your kids are getting off school early set a reminder in your phone to pick up or organise someone to pick up in case you have an appointment or other engagement.
One final thing, make sure you try and get a decent night and wake up before the kids and take your meds so you’ll feel more equipped to deal with what lies ahead.
Do you have any tips or tricks to help save time in the morning? Let me know in the comments below!
As my Dad always taught me; fail to prepare and prepare to fail!
I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
Hey there, hi there, ho there!
So, I’m on a mission right now to find the best gadgets for “spoonies”. Things that make life bit easier can mean the difference between living a normal life and being bed bound. Last time we looked at the Oska Pulse which is a truly life-changing device. However, there are some meds that I still need to take multiple times on a daily basis.
I am useless at remembering to take my meds. Brain fog has a lot to answer for that. So I could just set a reminder on my phone, right? Yeah, I could but I live in a house where the minute you set something down, it gets swallowed. Plus, when the alarm goes off, I usually just silence it and if I’m in the middle of doing something I say to myself “Yeah, I’ll get my meds there in a minute.” Then I forget and wonder why I’m in so much pain or feeling dizzy an hour or so later. This is where the Pill Drill comes in.
What is a Pill Drill and how does it work?
Wired.com have described the Pill Drill as “the Fitbit for taking medication”. I couldn’t agree more (not that I have a Fitbit).
So the first thing you need to do is to set up the hub. The hub is the heart of your kit. Once you set it up in whichever room you tend to keep your meds, it will remind you when to take your meds and keep track of your intake.
Once you’ve taken your pills, you scan the pod from your weekly pill strip. Each pod has a built-in scanning tag. The lids are very easy to open and close. Which is handy for people like me with weak hands so ensure you keep it out of reach of children.
The weekly pill strip comes with two pods for each day (e.g Monday 1 & Monday 2). If you take pills more than twice a day, you can order extra pill strips (RPP $29.95). The pill strip also comes with a strap to keep the pods secure while traveling.
In Ireland, we generally don’t get medications in pill bottles but rather in boxes so I haven’t used the scanning tags myself. But, if you have pill bottles, you can attach scanning tags to them. You will receive 12 scanning tags (A-L). You can order an additional tag set should you need them (RPP $12.95). They would also be helpful for items such as inhalers, injections eye drops or other irregular shaped items. The tags are can be placed in the three tag holders provided. More are available should you need them ($4.95).
In addition to scanning your pill pods, you can also scan your mood cube. The cube has five faces which displays a range of feelings you may experience on a day to day basis. These include: great, good, OK, bad and awful. The cube will register your mood and track health patterns over time. This cube is also especially handy for those who care for loved ones. If you’re not around, you can be notified in how the person taking the meds is feeling over the day. Once you scan, the carer/family member/loved one will be instantly notified. This is an optional feature.
The Pill Drill app syncs with your hub in real time. Here, you can edit and modify doses, receive reminders and log doses, receive adherence updates and track mood and symptoms. The app is totally optional.
My thoughts on the Pill Drill
I did have slight issues setting up the Pill Drill and connecting it to the WiFi. It didn’t take long for us to sort it out though. If you are not tech savvy you might need someone to give you a hand. Pill Drill does have an FAQ page to answer the majority of questions you may have in setting up.
Once everything was set up, it was pretty easy to use. I no longer forgot to take my pills and taking them at a scheduled time every day did improve my symptoms.
Each week my husband fills the pill pods (I find it very difficult getting pills out of their trays) which means I don’t have to spend five minutes fumbling around trying to get pills out each time I needed to take them. I do need to order a second set of pill strips as I take some meds up to four times a day. Pill Drill states that they ship to the US, Canada and Australia but you can contact them if you would like to order them in your country. I will use my addresspal (An Post) account to have the extra strips delivered to me.
The kids enjoy scanning the mood cube for me. I didn’t use the option of linking the Pill Drill to my carer but I do plan to do this as he is away for entire days every week or so. I really like the availability of this feature for those who do need caring for. It is reassuring to know that even if you’re not around, that you can make sure the patient is not putting themselves in danger or causing unnecessary symptoms by missing their meds. Knowing how their feeling is lovely too. If you get a notification that the patient is feeling very unwell, you can go to them/call them/doctor.
The app is really only needed if you need to modify dose and/or are out of the house and away from the hub. If you’re away from the hub, your phone will remind you to take your meds and you can log your dose so that your adherence score stays consistent. I would recommend relying on scanning the pills on the hub rather than logging the dose on the app (if you’re at home) so that you’re not tempted in knocking off the alarm the hub makes. This is because you may forget or delay to take your meds. So if you’re home, use the hub as consistently as possible.
One thing that would make the Pill Drill even better is a feature to remind you to order more pills from your doctor and/or pharmacy. Since it tracks your intake already, I imagine it wouldn’t be difficult to incorporate such a feature. You might say you would know how many pills you have left seeing as you put them into the pill pods each week but if you suffer from brain fog, you live a busy life or someone else is filling your meds, you may forget to order a new script.
Product rating: 4/5
The Pill Drill Smart Medication Tracking System retails at $199.00 with a 30 day money back guarantee. The kit includes:
Pill Drill hub, 2 pill strips (Monday-Sunday x2), 12 scanning tags, 3 elastic tag holders and the mood cube. The app is available on the App Store (Apple) and Google Play (Android).
For more information about Pill Drill see the wesbite or Facebook page.
So recently , I had the displeasure in confronting two “gentleman” in their work van who decided to it take it upon themselves in parking in one of the few accessible spaces in my town. This is a common occurrence in my town and well, all over Ireland really. Many people in my country have this sense of entitlement and have little regard for those of us who genuinely need these spaces. So, in light of my recent argument with the two blokes who decided to take up a space that I needed, I present you with some of the excuses I have been given over the years.
Please, take the accessible space if you only need it for two minutes
No, really it’s quite alright. I’ll just drive around and around until you decide to move. Honestly, it’s no problem. If I can’t find a space I’ll just take my walking stick and risk dislocating my pelvis. But I’m sure that’s not as inconvenient as it is for you to have to find a space and walk to your destination which is located 50 paces away. Heaven forbid you actually use the healthy body you’ve been blessed with for a minute or so. And no, I am not throwing daggers in your direction as we go around and around waiting for you to catch the hint. That look, is admiratiton, I swear.
Please take the accessible space to make your delivery
Go right ahead, take that space to unload your delivery. I’m sure you won’t take several minutes to carry all those crates one at time into the restaurant/shop. Jesus, if you walked three more meters where the next space is, you loose the extra 10 seconds parking in the blue spot gave you. cvv Time is money, people. Time is money.
Please take the accessible space to eat your lunch
You must be so famished, you poor thing. You couldn’t even make it outside the car park to stuff your face. What happened, were you in trapped down a well? Was there a food shortage in your village? You just sit there and eat your lunch while I struggle to get my wheelchair out of the car and try and avoid on coming cars. Your stomach comes first.
Please take the accessible space to avoid the rain
Are you related to the wicked witch of the west? Cause if so, you really should avoid the rain, I don’t blame you for not considering those with blue badges, you might melt! But just in case some pesky person with a disability takes the space before you do, let me introduce to you some very modern inventions. These items are revolutionary! The first one I call a coat (still working on the name). This amazing contraption is relatively cheap and protects you from the rain you fear so badly. Simply put your arms in the sleeves and zip up the front. Simple! Available in a variety of colours and fabrics.
The second innovative invention is even better when you pair it with the coat. Simply open the keepyoudry-o-matic (my people want to call it an umbrella but I don’t think it’s as catchy) and hold it over your head. Voila! You’re dry! Amazing, huh?
Please take the accessible space to collect your able bodied bodied friend
I mean, it makes sense, doesn’t it? You don’t want to fall out with a friend because you made them walk an extra 10 paces. That’s a deal breaker there. The secret to a long lasting friendship is laziness and a mutual disrespect for blue badge holders.
Please take the accessible space to run in and “grab a few bits”.
No, no, no please go and do a full shop. Don’t rush yourself, after all your time is more important than mine. It’s not like I have hospital appointments, doctor appointments, trips to the pharmacy or my physiotherapist to see. It’s OK I’ll just hobble across the car park and that’s OK cause clearly the teabags and biscuits you need for your guests are so much more important than my health.
Do you know anybody who does these things? Have you heard of more ridiculous excuses? Let me know in the comments!
This week I spoke to Emma from My EDS Journey. For a number of years Emma worked for a local charity helping people with disabilities but she has had to cut the number of hours that she can work dramatically as her condition, Ehlers Danlos Syndrome, has become unstable.
“Hi everyone, my name is Emma I am 40 and I live in a very nice area of the south east of England. I suffer from hypermobile Ehlers Danlos Syndrome (hEDS). This affects me in a number of ways, but mainly mobility, gastric, autonomic and pain are my problem areas.
My biggest passion is singing and I absolutely love musical theatre but unfortunately at the moment due to my current condition singing lessons and theatre visits are on hold! I took up blogging about 6 months ago as an outlet to communicate with others in a similar position to me and so we can share our knowledge and experiences living with a chronic condition. You can find my blog at http://edsjour.blogspot.com/edsjour.blogspot.com
Now that we know a little a about Emma, let’s look at her Friday Feelings entry:
Today is Friday, with most people I expect looking forward to a busy and varied weekend and perhaps socialising or spending time with friends and family. For me however, this evening will be the same as any other, curled up watching TV or listening to music while trying to get comfortable.
My energy levels are currently very low and I am going through a bad period with my EDS, I wonder what my next problem will be as something new is always cropping up!
I like to take each day as it comes and not think too far ahead as my health is unpredictable and thinking about the future is scary and uncertain.
Due to the nature of EDS and it mainly being invisible to others, a lot of people don’t understand how it affects us, they may say “you are looking better today” or “ you need to keep up your exercises” as though these words are a magical cure.
I only wish they could see what is going on in the inside and then they would understand the phrase “make our invisible visible”.
A big thank you to Emma for taking part in Friday Feelings and being so open with us. Can you relate to Emma and her feelings of uncertainty about the future? Let us know in the comments below!
Want to write your own Friday Feelings entry?
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 firstname.lastname@example.org
Be sure to put “Friday Feelings” in the subject bar.
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