*I have been given this course free of charge as part of a review through the Chronic Illness Bloggers network. Although the course was a gift, all opinions in this review remain my own and I was in no way influenced by the company.*
Fellow chronic illness blogger, Esther who runs the blog Life in Slow Motion offers three different courses for people with chronic pain.
Esther is a counsellor and writer. Her aim is to help people address the physical, spiritual, and emotional impact of chronic illness and pain.
I took up the offer of reviewing the 31 Days of Expressive Writing of Expressive Writing for People with Chronic Illness and Pain.
The course aims to help reduce emotional stress, improve physical health and to help patients “find themselves again”.
Reduce Emotional Stress
“Writing that includes a high level of emotional disclosure can improve mood, reduce intrusive thoughts and anxiety, and increase your overall sense of well-being.”
Improve Physical Health
Research shows that expressive writing can reduce stress hormones, increase immune function, lower heart rate, and decrease physical pain.
Find Yourself Again
Expressive writing will help you process feelings and memories, gain insight and meaning, process spiritual issues, and set future goals and plans.
So, what is expressive writing?
Expressive writing is personal and emotional writing without regard to usual writing conventions, like spelling, punctuation etc. You must turn off your inner dictionary and thesaurus. Expressive writing simply expresses what is on your mind and in your heart.
Expressive writing pays more attention to feelings rather than the actual story itself. But, like narrative writing, expressive writing can have a story. But often, expressive writing is difficult and unpredictable, and that is a perfectly normal. Expressive writing is not so much what happened as it is how you feel about what happened or is happening.
What does the Expressive Writing Course include?
The course is broken up into eight “chapters”.
-Introduction to Expressive Writing
-Your Grief and Emotions
-Your Strength, Joy and Hope
Each day you are given an exercise or “prompt”, the exercises range in time but take no longer than 30 minutes each.
The beauty of this course is that there is no deadline, you can do as much or as little of the course as you like in a day. This is ideal for people with chronic illnesses because, as we all know, there are days where we are simply not able to do anything but lie there and wait for our symptoms to ease. Of course then there is brain fog which makes us forget, like, everything!
Over the few days I did this course, I found myself to be in a far better head space than I have been in recent months. Just getting my feelings down on paper on a daily basis, was actually very liberating.
I learned a lot about myself during this course. There are a few particular exercises where you just write, not about anything in particular just wherever you mind takes you for those few minutes. When I read back what I wrote I realised just how much is on my mind, all the things I worry about sitting there on paper was a real eye opener. Interestingly, a lot of them were issues “normal” people would worry about like money, housework etc. Writing them down made them almost more manageable to conquer. That in retrospect, everything I worry about can be fixed, one way or another. Some may take more time and help than others but all in all, I have conquered much more difficult tasks.
Those types of exercises were my favourite and I will definitely continue to use this as a form of self therapy.
I also really enjoyed the more structured exercises such as writing about the experiences I had with the different stages of grief and looking back at all the milestones I achieved since diagnosis.
There are some exercises that are based on faith like reading through bible verses and analysing and applying it to your own experiences with chronic illness. I did skip these particular sections as they didn’t apply to me as someone who doesn’t practice religion.
I did go through the Faith section of the course and from what read, I think anyone who finds comfort in their faith would be fond of this particular aspect of the course. I think it would also be healing for somebody who is struggling with their faith.
There are some PDF attachments which you can download for particular exercises and I plan to use them for a chronic illness bullet journal I’m putting together.
The Expressive Writing Course is $39 which I think is a fairly reasonable price considering the course was put together by somebody who is a licensed Clinical Counsellor with a Master’s Degree in their field . It is really hard (at least here in Ireland) to find somebody who specialises in counselling for chronic illness. Waiting times for mental health services are also some of the worst in the world. I waited two years to get an appointment with a psychiatrist. I started this course just before my first appointment and I already felt much better in myself by the time I saw the doctor.
When you break it down to $1.20 a day for a researched based course, you are getting a a really good deal. Plus you can also redo the course if you so wish.
There are some parts of the course that you may not feel like doing (like me with the faith section) but it’s simply a case of taking what you want from the course and using it for your every day life.
While I haven’t seen an improvement in my physical health thus far, I feel that if I continue to practice the techniques I learned on this course that I will feel better equiped to deal with the daily battle that is chronic pain.
I would have liked if the work could have all been done on the one platform as an online journal rather switching back between word and the website. But that’s just personal preference.
In Ireland, the debate around the Eighth Amendment is well underway. With a date for the Referendum to be confirmed, it is expected to take place May or June of 2018. This week we explore the issues around the Eighth Amendment and why people with a disability in Ireland need access to free, safe and legal abortion.
Tactics are getting dirty, with “pro-life” groups buying domains that appear to be websites about repealing the Eighth. In actual fact, the sites direct people to a pro-life site. News sources reveal that Ireland’s main anti-abortion group has hired a company that has worked with Donald Trump and the US pro-gun lobby to help implement its referendum strategy.
The Irish Times also revealed that an anti-abortion group has hired a political consultancy which has been linked to controversial aspects of the Brexit Leave campaign. The Pro-Life Campaign has, of course, refused to confirm if it has hired Kanto.
“Pro-Life has now hired uCampaign to set up its “Love Both” app. UCampaign was founded by Thomas Peters, a conservative Catholic US blogger. He has created apps to promote the president’s “America First” strategy as well as for the unsuccessful campaign against same-sex marriage in Australia, the UK Conservative Party, the Vote Leave Brexit campaign, the US National Rifle Association, for Ted Cruz and Rand Paul, the Republican politicians, and for American anti-abortion groups.”-The Sunday Times
We all know how nasty things got during those events last year so it is making me anxious about what is to come over the next four-five months.
People with disabilities should not be used for emotional blackmail
One argument that is being constantly used is that disabled people will be wiped out from existence should the Eighth be repealed and legislation brought in to decriminalise abortion.
Recently, I had the displeasure of arguing with a man who had this notion. His proof of this happening? A video of an American man with Down Syndrome. In this video, the man says that he lives an amazing life, given amazing opportunities and that those with Down Syndrome shouldn’t be looked down upon. The ironic thing is that this video was used to prove people with Down Syndrome are being wiped out. Yet, in America where abortion is legal, 6,000 babies with Down Syndrome are born each year (CDC statistic). Two babies are born with the condition each day in the UK. It is downright patronising and condescending to assume a person would have aborted their disabled child if they had access to abortion. Even in countries where abortion is liberally legal, the rates of abortion as a whole are very low. Most disabilities are not diagnosed until about 20 weeks into a pregnancy. Should the legislation follow the Citizen’s Assembly recommendations, no foetus with a non-life-threatening (known) disability will be aborted legally. The foetus would have to be diagnosed with a fatal abnormality to allow for later term abortions (after 12 weeks).
People often refer to Iceland being Down Syndrome free. Here’s what Hulda Hjartardóttir, chief of obstetrics at Iceland’s National University Hospital had to say on the matter:
“The truth is that one-third of mothers-to-be choose not to have more [pre-natal] tests done after the first indication of Down Syndrome. These women want to continue their pregnancies even with the increased chance of Down [Syndrome]. [Also], 80 to 85 percent of [pregnant] women choose to have the screening, so there are 15 to 20 percent who don’t. Those women don’t want the information. Of the women who have the screening and get results that point to increased risk [of Down Syndrome] about 75 to 80 percent get further tests done but 20 to 25 percent choose not to.”
Dr. Hjartardóttir also said that in cases of prenatal Down Syndrome diagnosis women and parents are offered the opportunity to meet with doctors and nurses who work with people with Down Syndrome. Parents are also offered the opportunity to meet the parents of those who have Down Syndrome.
I have really no idea why the pro-life debaters insist on using people with Down Syndrome to further their agenda. I don’t know why anyone would use people with any disability for this debate in this manner. Perhaps it’s because we are seen as needing to be protected. But, we don’t. We want to be treated like everyone else and we want equal rights. We are not pawns in anyone’s game.
Earlier this week, CEO of Down Syndrome Ireland, Gary Owens responded to the use of Down Syndrome in the pro-life literature. He respectfully asked that people with Down Syndrome not be used as political footballs in the run-up to the Referendum. He stated that it was disrespectful to those living and caring for those with Down Syndrome, or any disability for that matter.
And yet, just yesterday, this was posted on Twitter:
Most people with disabilities are normal people who live fairly normal lives. They have children, jobs, they’re married and yes, they even have….*whispers* sex! I know, right?!
The point is that people with disabilities need reproductive rights too. We need to be allowed have a say over what happens to our bodies in pregnancy and during birth. We need access to free, safe and legal abortion.
As someone who regularly leaves their country for access to medical treatment, I can empathise with the nine women who leave Ireland daily to access abortion. I too have to scramble to find thousands to fund the trip. I too often feel isolated and let down by my Government who deny me and my children basic health care.
Travelling abroad for an abortion
Travelling for tests is exhausting, causes a flare up of all my symptoms and leaves me in bed for days and days. Sometimes my condition progresses after travel and stress. I couldn’t imagine how bad off I’d be if I’d have to travel for a procedure, have to travel back the same day and recover from something like an abortion. I wouldn’t be out of bed for weeks. My children wouldn’t have their mother to play with, to feed from. With the risk of complications and even death in any surgery, I may have, having to leave before I had time to recover some bit for the flight home could leave my kids motherless. Like all the rest of my medical care, abortion needs to be accessible in my own country.
If a person with a disability has mobility issues they may need to put things in place to help them get to and from the airport, to the hotel and clinic. This takes away their privacy in order to access an abortion abroad (which is a constitutional right).
Financing an abortion
I haven’t been able to work outside of the home in six years. My income is no more than a couple of hundred Euro a week on Disability Allowance. My husband is on Carer’s Allowance. Between the two of us, gathering enough money to travel to the UK, book a hotel and the abortion would be impossible. Sure, we have friends and family who could help us out but, not everybody does. Not everyone has a partner to help through the process of abortion. Not everybody has a support system going through an abortion.
Pregnancy is a risk to health
I take precautions in preventing pregnancy but, nothing is 100% safe. Sometimes one of those suckers gets through and throws a spanner into the works. If I found out I was pregnant tomorrow, I would have to access abortion, no question.
During my second pregnancy back in 2014, I was wheelchair bound thanks to severe Symphysis Pubis Dysfunction caused by my Ehlers Danlos Syndrome. I was in constant pain with my dislocated pelvis. You’d think I’d have been used to the pain since my joints dislocate on a regular basis but ask any woman who has suffered from the condition and they’d tell you it’s like being kicked in the vagina with every step you take. By five weeks I was in the wheelchair and often forced myself to use my special crutches so my muscles wouldn’t waste away.
Then there was the horrific ordeal of hemorrhaging. I lost just under half of my blood volume., in and out of consciousness and when I was awake, I was vomiting. My baby could not be in my arms for the first couple of hours of her life as I was so out of it. People with EDS are at risk of this, I knew that at the time but my first pregnancy was so uneventful, I (naively) figured I’d be alright.
They were calling for blood but luckily, they stopped the bleeding just in time. We can not risk that happening again. I can not risk my life and leave the two children I have without a mother.
I worked very hard to get out of my wheelchair. Even though my determination was strong, I still have to use it if I will be out of the house for an extended period of time. If I were to get pregnant again (never mind the birth bit) I won’t get out of the chair again.
A pro-lifer once told me if I were to get pregnant that I could simply “get induced early”. The problem with that scenario is that pregnancy is what disables me. Remember; five weeks into my pregnancy I was in a wheelchair. I wouldn’t make it to 24 weeks.
It is down to each person to assess the risk of being pregnant. I knew the risks of pregnancy with EDS and decided to go ahead in my second pregnancy. But, if I knew then, what I know now, I don’t know if I would have gone ahead with either of my pregnancies. I love my children to death and they make life with disability worth living but I have been left more disabled and mentally scarred from my experiences during pregnancy and birth.
Continuity of care
There is none, simply. There is no contact between a patient’s medical team in Ireland and the team carrying out the abortion in the UK. Which means the gynaecologist/OBGYN may not have all the information they need to properly care for their patient. Since there are thousands of disabilities and even more symptoms and complications that can arise, it would be hard to know of what to be cautious of. Medical history is very important, especially when it comes to surgery. For example, people with Ehlers Danlos Syndrome metabolise drugs differently to the average person.
The issues go on and complications are not exclusive to Ehlers Danlos Syndrome. So, by the time a person has gathered the funds and have organised a trip out of the country to procure an abortion, they may have passed the point where they can have an abortion through the use of the pill, mifepristone. They will then instead have to undergo a surgical abortion.
Without a knowledge and background from a patient’s multidisciplinary team, things can get dangerous. However, should abortion be allowed in Ireland, teams could communicate (not that Irish doctors know a great deal about my condition) and put safeguards into place to prevent any risks to my health and life.
Sadly, there is also no continuity of care when a person travels for an abortion due to a Fatal Foetal Abnormality.
Sterilisation and celibacy
In the comment sections of online media outlets, you can be guaranteed to find at least one comment telling women to “just keep their legs closed” or to “get their tubes tied”. If it were only that easy! Women and trans men frequently ask to have their tubes tied or to have the whole lot removed. But, again, we can’t be trusted with our own bodies. It is incredibly difficult to get a tubal ligation in this country under a certain age or before you have a certain amount of children. Women with no children and who have no desire to be parents are often told “You just haven’t met the right man, yet” or “what if it doesn’t work out with your husband and you want to have children with someone else?” Do people honestly think we haven’t thought of all these scenarios before making such a big decision?
According to ongoing research conducted by Deirdre Duffy (Manchester Metropolitan University) and Mairéad Enright (Birmingham Law School), the main reason women are denied tubal ligation in Ireland is because of doctor’s own moral or religious beliefs.
Again, using myself as an example, my medical team will not allow me to have any unnecessary surgeries, only if it’s an emergency. This is because of my fragile connective tissue, one nick with a 10 blade (scalpel), in the wrong place and I could bleed out. The risk just isn’t worth it.
As for the whole “keep your legs closed” spiel, it’s such an unrealistic and ridiculous argument. You are against the idea of abortion and yet, your solution is to just have no pregnancies at all? No children to ever be born? Let’s face it, humans need sex. We are social creatures that need affection. We have needs and there is no shame in admitting we are sexual beings-even people with a disability!
I think the Catholic idea of people (and I mean women) who have sex just for fun is sinful is still very much apparent in Irish society. A woman could have a one night stand, take all the precautions in the world and end up pregnant. That’s not allowed though. She would be accused of using abortion as a form of contraception by those who are ignorant of how contraception actually works. Let’s face it, she would be branded a slut by many in society. Yet, over half of the people who travel for abortion are already parents. No name calling for them (well, except murderer by pro-lifers). From what I gather, the pro-life side doesn’t have an issue with exporting abortion to the UK. Otherwise, they’d be asking to repeal the 13th amendment that gives us the right to travel. Many don’t even have an issue with abortion in cases of rape incest or FFA. So, it seems people have an issue with how the foetus was conceived.
It’s not a very common story, but one that isn’t unheard of where two people meet, they fall in love and get pregnant. Ten or so months later, they welcome their very wanted child to the world only to discover the baby has Cystic Fibrosis. Yes, the disease is incredibly rare but Ireland has the highest rate of it in the world. Newborn bloodspot screening for Cystic Fibrosis commenced in Ireland on 1st July 2011. All newborn children in Ireland are now tested for CF as part of the existing newborn bloodspot programme. Newborn blood spot screening is usually known as the ‘heel-prick test’. The test only covers the most common forms of CF.
Which means anybody over the age of seven (who don’t know of a family history of CF) won’t know if they carry the CF gene. Before 2011 any couple who didn’t know they had the gene for CF found out tragically when their child was diagnosed with the condition. Many couples were petrified of getting pregnant again and the 25% chance subsequent children would inherit the condition.
Many people who have genetic conditions choose not to have children or go ahead with a pregnancy and some do. Whether someone takes the gamble like we did or decides to not go ahead with a pregnancy, they should be supported in whatever decision they do make. You don’t have to agree with someone to support them. You accept their choices as they do not affect your life. That is the true meaning of “love both”.
I have an almost three-year-old daughter. She inherited EDS from me. By age two she has suffered four dislocations. When puberty begins, her condition will worsen. Like me, she’ll be high risk if she was to ever get pregnant. At such a young age she is already showing signs that her condition will be worse than what I have experienced. I worry what a pregnancy would do to her. Whatever she decides, I will support but I want her to at least have a choice. I want her to be able to make a decision, I want her to be able to talk about her decision should she choose abortion. I don’t want her to feel ashamed and to feel as though she is doing something wrong. Nobody has an abortion on a whim or without thought. Nobody puts themselves through something like that for a laugh.
“You wouldn’t be here if it hadn’t been for the Eighth Amendment”
I am adopted. Thanks to good old Catholic Ireland, I was removed from my birth mother who was young and vulnerable. Yes, I was placed with a good family and had a pretty good childhood but, the adoption scarred me. I honestly don’t think I would have been aborted if my parents had been given the option. I was wanted but society wouldn’t allow it. If my parents had taken the boat to England? I wouldn’t be here and I would be none the wiser. Why? Because I would have been a foetus.
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
One mother's experience of life with Ehlers Danlos Syndrome