by Band Back Together | Oct 30, 2018 | Arthritis, Childhood Diseases And Disorders, Chronic Pediatric Illness, Family, Feelings, Grief, Group B Step, Health, Help For Grief And Grieving, How To Help A Friend With Infertility, How To Help A Parent With a Special Needs Child, Infertility, Loss, Meningitis, Muscular Dystrophy, Parenting, Pregnancy Complications, Sadness, Special Needs Parenting, Viral Infections |
Friday’s child is loving and giving.
So why is my Friday child confused and behave as though he’s Wednesday’s child instead? B doesn’t stick to the old English poem. He got confused along the way. I know exactly when that was. When he was twelve days old and caught the dreaded meningitis.
That was the worst of times.
We were told he wouldn’t survive the night, but he did. We were told he would never recognize us or smile or manage any basic functions, but he did. I won’t bore you all with the setbacks, the heartache every night, the months spent in hospital, how none of our friends visited, the long, drawn-out wait to get home.
Those are for another time. Maybe.
This post is about now, this minute, how I am feeling. I have never written anything like this down before, but I am an avid follower of Aunt Becky and she told me to, in all her posts about Band Back Together.
I don’t know how to make this a nice flowing post rather than a list of illnesses, surgeries, appointments and setbacks. I suppose I’m having this issue because that could be how you would sum up B’s life so far. I know that’s how others see him. When we meet for a Girly Catch-Up date, it’s never, “how are you all?” it’s “what’s B having done now?”
My friends are great but I’ve been labeled The Coper; or she who deals with all that life throws at her. B is labeled as ‘poor thing.’ Not a great label for an intelligent, reasonably active eight-year old. We have settled into this comfortable way of coping that I don’t know how to let people know that sometimes I am not coping very well.
Maybe Band Back Together will be the friend’s ear I can bend.
Anyway, back to my child of woe.
We were lucky to get pregnant with B and we were lucky to have a nice ‘normal’ pregnancy. B was born on his due date and then things started to go wrong.
B was labelled with Torticollis and Talipes within the first few days of his life.
It threw us but we had just come to terms with all of that when B caught the dreaded Meningitis, caused by late onset Group B Strep. Again, not to bore you with that hell of a first 6 months, B managed to cling on and then thrive. He was considered a ‘floppy’ baby due to, what we figured was the brain damage caused by the meningitis, so all his milestones were delayed. He also couldn’t work his muscles properly, including swallowing, so B was fed through a gastrostomy.
When we thought we were through the worst year of our lives, we were hit with another side swipe, B’s hip was dislocated and deformed, it needed immediate surgery. That surgery was deemed successful and so we carried on. We even began to relax a bit and focused on having some more children. B still had some problems, mainly with his muscles, but we had got him off his gastrostomy and, again, he was thriving.
So, we relaxed and concentrated on other issues, such as my infertility and the long rounds of IVF, but again another story for another time.
During these years we were eventually blessed with twins Z and E. All seemed well in our household, the girls were healthy and B was doing well.
Then, when B turned 6 we were knocked over again by the diagnosis that his hips weren’t right still. So major surgery followed, which involved B being in an hip spica for 8weeks (not great for a 6yr old boy and a mum who also has 2yr old twins to look after) and wheelchair bound for many months more.
However, we all survived, well I am a’coper’!
B was just beginning to get mobile again when a doctor noticed his face was looking wonky.
A year of maxillofacial appointments followed which ended with us being knocked over again by the diagnosis of Juvenile arthritis. The arthritis had been attacking his jaw joints for some time unnoticed and had now deformed them to the point of major facial surgery required.
However, they cannot do this while the Arthritis is active, so cue major arthritis drugs. Now B has to have weekly injections, for years, that are lowering his immunity, great.
However, we are coping!
Now factor in his hips update as well last week and we are cooking! B’s hips have, again, grown wrong and further major surgery is required, probably in January. Again my lovely son will be wheelchair bound because of his hips, injecting for his arthritis, struggling to eat because of his jaw deformity and tiring due to his muscle issues. Again, I have taken on this diagnosis and have dealt with it and I am prepared for it. What I didn’t expect was for his orthopaedic surgeon to say that things don’t seem quite right with B’s muscles and they seem to be getting worse.
Well, yes, he has hypotonia from the meningitis. obviously his muscles are not right.
That is not what he meant, the surgeon knows of B’s past history and thinks there is something else affecting him.
So that is why my gorgeous, bright, loving son is now being tested for Muscular Dystrophy and the medical view is that he probably does have it.
WHY?? I mean, hasn’t B gone through enough?
Haven’t I gone through enough? Haven’t all our family gone through enough?
B has, at the moment, hypotonia, hypermobility, hip problems, arthritis, jaw problems and now possible MD. Any 1 of these diagnoses would upset a parent, my son has all of them.
I am not coping any more, outside it looks like business as usual, but inside I am crumbling. I look at my friends’ children and, selfishly, wonder if I can pass on just one of B’s problems to them. Why did he get all of them? Even the doctors can’t believe how unlucky he has been. When friends worry about their child’s broken wrist, I think that I wish B could do cartwheels and break his wrist like that as well.
Then I feel bad for not having sympathy for them. Then, I overcompensate for my guilt by offering help and being the friend they can always turn to. They take that help because they know that I am a coper whereas they aren’t. They make half-hearted promises of help in return but, they have their own families to look after and B and I would need too much help. My hubby is pretty hands-on with the house and the kids but he has never been to a hospital appointment with B, never.
I feel it is B and I against the world sometimes.
So, there you have it, my child of woe.
This has been quite therapeutic, I feel like I can now go out into the world and carry on ‘coping’ again.
by Band Back Together | Oct 29, 2018 | Coping With Depression, Depression, How To Cope With A Suicide, Loss, Major Depressive Disorder, Mental Health, Mental Illness Stigma, Premenstrual Dysphoric Disorder, Suicide, Therapy |
This week has been a struggle.
In brief: I have a chronic mental health condition, and have struggled for years to find mental and emotional stability. I’m also a woman, and am impacted heavily by hormonal fluctuations that occur on a monthly basis.
Anyone who feels that I am just whining can do me a favour and stop reading right now.
Through medication treatment and self-discipline, I have found a level of stability that has been unparalleled in recent years of my existence. All this good goes out the window, however, for a period of a few agonizing days on a monthly basis.
Is it predictable? Yes.
Does that make it any easier? No.
Recently, I’ve been told that I am not a good “fit” for certain mental health services that I feel should apply to me. First example: I finally had an appointment with the Women’s Health Concerns Clinic outpatient services this past Thursday. I spent months looking forward to this appointment, hoping it would provide some relief.
Here’s what I learned:
Don’t put all of your eggs into one basket.
That’s a worn out old adage, but there is much truth behind it. The psychiatrist on staff at the Women’s Health Concerns Clinic felt that, due to the fact that I have depression occurring presently as part and parcel of my chronic mental health woes, I am not a good fit for the clinic’s services.
I do not have “textbook” pre-menstrual dysphoric disorder (PMDD) symptoms. Also, in terms of medications that are usually helpful for PMDD, I am already taking a good selection of those recommended for front-line intervention, including vitamins and minerals such as B6, Calcium, and magnesium. There is potentially some room for dosage adjustment, but in terms of there being a supplementary medication trifecta for PMDD, that is it, and I’m already taking all of them.
I am not currently taking the “recommended” antidepressant of choice for PMDD, but the one I’m on now has done so much good for every other aspect of my life that I am extremely hesitant to swap it out for another medicine that might not work so well. Trintellix has helped me immensely. I don’t cry on a daily basis anymore. I’m more open with everybody: strangers, friends, my husband, you name it. I can actually get to work most days. I feel stable, I feel good… most days. Most days, I am an absolute delight – and I love it!
Obviously, I am hesitant to swap out this medication for one that is more “tried and true” for symptoms of pre-menstrual dysphoric disorder. There is absolutely no guarantee that the antidepressants that have been clinically studied for PMDD effectiveness would work as well. In fact, I’ve tried most of them, with little success. So why swap out something that works well, for 20-ish days out of the month, for something that has been scientifically proven to be more effective for PMDD symptoms, but does not work well with my unique chemical composition? It makes no sense.
I’ve talked a lot about medication and I want to address something that I learned the hard way, ages ago:
In mental health, medication isn’t everything, Especially when it comes to more complex conditions. But my efforts to connect with a therapist or mental health counsellor at present have left me feeling even more lost and alone in my journey.
The Women’s Health Concerns Clinic heard my request to connect with a 1:1 therapist or counsellor in the Hamilton community, but did not offer to connect me with any such services. I was offered a referral to a mindfulness group, something I am not sure I will pursue due to the fact that most publicly operated mental health groups take place during the daytime hours, and I need to go to work during the day so I can support myself financially.
Sure, I could take time off work for the group, but doing so may jeopardize my employment and would be difficult to finance at this point, since any hours of work missed for the mindfulness group would constitute unpaid time off.
Desperate, I decided to look into private therapy options, and sourced out a psychotherapist’s website via the Psychology Today web page. This therapist sounds like a great fit, based on her specialties listed on her online profile page. I contacted this psychotherapist and asked about accessing her services. Obviously, private therapists cost money, something of which I am well aware; however, this therapist recommended that I seek to gain a referral to her through my employer’s Employee Assistance Program, which could, potentially, fund up to four sessions with this therapist to see if that would be beneficial for me, and also so I could establish if I enjoy working with her on a 1:1 basis and wish to pursue services further.
Wonderful!
I called up the EAP and explained the situation. The response I received was absolutely gut-wrenching: Because I have a chronic mental health condition, they are “unable” (or, unwilling) to provide me with a referral due to the fact that my therapy goals may not align with their mandate of connecting individuals in need with short-term counselling services.
It would be amusing, if it wasn’t so sad, to learn that even designated mental health support services stigmatize against people presenting with more severe mental health conditions.
What an eye-opener that was
In light of the recent high-profile suicides of wildly successful fashion designer Kate Spade and world-renowned celebrity chef Anthony Bourdain, I must point out that turning away a person who struggles with mental illness from suitable services because they don’t fit the proclaimed mandate or envisioned purpose of the service is a very, very dangerous practice.
Anyone reaching out for mental health support should at least be connected with suitable services once they make the effort to reach out, even if the initial service with which they’ve made contact might not be the best fit.
It is highly unwise to tell a person struggling with a chronic mental health disorder that they can’t access services because they have the wrong kind of mental illness.
by Band Back Together | Oct 25, 2018 | #MeToo Movement, Addiction, Alcohol Addiction, Anger, Anxiety, Depression, Emotional Boundaries, Fear, Guilt, Healing From A Rape or Sexual Asault, How To Help With Low Self-Esteem, Loneliness, Rape/Sexual Assault, Self Loathing, Self-Esteem |
Rape and sexual assault take many forms.
This is her story:
When I was 19 years old, I couldn’t leave the house for anything important. That’s the rub. For anything important. I was still able to go out, and have a beer at the pub, or go shopping, or visit friends, but as soon as it came time to do something official, like pay a bill or get a job, or go to a Centrelink meeting, I’d dissolve into a bubbling pit of terror and tears and hide in the shower for as long as I could without freezing.
The thought of dealing with someone with authority scared me so much – I felt judged before I even got there. Dealing with unsympathetic bitch government workers didn’t help either. They made me feel like because I relied on their help, I was somehow less than a person.
I hid, and cried, and my fiancé at the time worked his arse off to keep us housed and internetted. The more he worked, the guiltier I felt, the more I drank and the worse we got. Eventually he convinced me to try for my security license, and I did. It was a job I could do – sitting on my arse in a car for $20 an hour, not having to talk to anyone. I traveled to Sydney every day for a week to do the course and get my certificate, and on the last day when I graduated I partied with my fellow students and teachers, celebrating that I finally had managed to do something constructive for myself.
He loved me, and was happy for me, and so he came in to Sydney to party with me. To combat his own fear of dealing with people he didn’t know, he drank himself stupid, and caught the train in. I didn’t want to deal with him. I sent him home. I cried. I drank. And instead of going home that night, I stayed at my teacher’s place and slept with him.
I made us break up. He begged me to reconsider but I couldn’t believe what I had done. I couldn’t allow myself to stay with him and infect him with my wrongness, and I didn’t want to have to deal with a rotting relationship while I tried to sort my thousand and one problems out.
So we broke up, and I started working for his boss – a man we had both known for over a year.
The Boss and His Wife knew all about what I had gone through. I told them everything almost straight away, and they professed sympathy and understanding. And then they made their advances. They had given me a job, and an income, and somewhere to live while I got my life back on track, and I was so, so grateful for that, and I can’t help but think that they knew what they were doing the entire time.
I was too scared to tell them “no,” in case I lost it all again, and I was also slightly interested. Never had anyone shown a sexual interest in my before. My fiancé was more of a confused little boy, and The Boss and His Wife were experienced, strong people who thought I was hot and sexy.
But I didn’t want to. I wanted to be alone for a while. I wanted to just be free. I wanted to know why everything about me was so broken. But if I lost my job I would lose my mind, and if I lost my mind I would never get better. So I did what I had to do to keep my sanity. And I would do it again.
After a few months I managed to break away, and sure enough they fired me for some made-up excuse within a week. By that time I had managed to work myself out a little bit more – enough to function as a human being again – and I could handle starting again.
To this day, I feel raped.
I feel like in the most vulnerable moments of my life, someone who I thought was my saviour took advantage of me. The thing is, knowing that I made the choice, and knowing that I did have that little bit of curiosity, and knowing that I would do it all again because I was right when I thought it would destroy my mind if I lost it all again so soon – it makes me feel as though my rape is not as valid as another woman’s. No one held me down, or hit me, or forced me, but I feel violated nonetheless.
I joke about it sometimes – it makes it easier to deal with – but it still makes me fall apart late at night. It still makes me cry like a baby sometimes, and it still ruins my sex life whenever I have bouts of memories. And it’s the conflict of feelings that makes me feel worst – feeling raped, and feeling unworthy of the title of “rape victim.”
And I’m back to not knowing what I am.
by Band Back Together | Oct 24, 2018 | Family, Feelings, Love, Marriage and Partnership, Marriage Problems |
Yesterday, I found within me a sharp so bitter it could twain my marriage and dismember a family.
In one gestalt twist of grievance, I realized I had the capacity to cut relationship with the detached precision of a pathologist.
My scalpel tongue gleaned against my clenched jaw in clinical consideration of the Y Cut as The Husband and I hit the first immutable impasse of our marriage like a hearse.
It was entirely mutual.
The smell of potential decay cleaved in my nostrils like carrion.
I stood in the rigor mortis of that moment and knew I had to yield or the damage I would do to my marriage would be irreparable.
My pulse races now even to reconsider how concrete was that tomb.
An expansive, vile id lurked inside me like a dark mine ready to deploy.
The Prince of Peace lives there inside me too.
It was the moment just before the moment too late.
It was taught, tight tension as sharp as a guillotine.
It was entirely mutual.
I bit my tongue hard enough to taste salt.
I drew in Light.
I put down being right.
I put away I don’t want to.
I shelved blame.
Through Grace,
by His strength alone
I chose Love.
Mercy pardoned us as we forgave each other the trespasses against us.
Nothing.
Nowhere.
Is more important to me than this marriage, this family and a life together.
by Band Back Together | Oct 22, 2018 | A Letter I Can't Send, Domestic Abuse, Emotional Abuse, Feelings, Helping Someone In An Abusive Relationship, How To Deal With A Self-Destructive Friend, How To Help A Loved One Who Self-Injures, Psychological Manipulation, Self Injury, Self Loathing, Self-Destructive Behavior, Teen Self-Loathing |
In my teens, I was toxic to everything I touched.
I didn’t mean to be – I just had a lot of pain inside and was too young to understand the connection between that and the reckless behavior I exhibited. You understood it and prayed for me, always hoping I would see the light.
It wasn’t that I was a trouble-maker as so many claimed. Yes, I vandalized an elementary school in my home town, thoughtlessly claiming the rooftop with my giant ‘My Name Was Here.’ Yes, I ran away once, all the way to Tennessee, and yes, I became a teenage mother at the age of sixteen.
Maybe I was a trouble maker.
And then into my twenties, the bad choices and reckless behavior chose to continue itself. I’m sure you remember the destruction I left in my own life after post-partum depression led to the loss of my two children.
Years 23-29 are a blur – six years in a hellish nightmare that I had convinced myself I deserved. You screamed at me that I deserved better, that my children deserved better. I assured you that I believed you – and stayed in the nightmare anyway, because that’s what I deserved.
I lied to my friends and my family. I became a stranger even to myself.
The worst part was marrying my abuser on your birthday as if to honor you in some sort of way. ‘Look Mama. I did it. I married what I earned.’ I spent my entire twenties hating myself for my teen years – and so another decade was lost to my toxicity.
I didn’t mean to lose those years with myself and my children.
It wasn’t until my thirties that I started to feel like you know – maybe I gotta start forgiving myself in order to act right. I read all the mushy quotes, convinced myself I was beautiful inside and out, walked away from everything that caused me harm and for a while I was so happy.
I was so brilliantly happy and dazed by how very blessed my life was – I even found myself being loved by someone who never raised his voice or hands to me.
But here I go again – unable to forgive myself and unable to stop the path of destruction. I can see it happening. I know I should stop it. But I can’t. Not until it’s all burned to the ground.
Because I’m toxic.
And I don’t know that I ever won’t be..
