A Carer’s Nightmare

So I am sitting here – 3 weeks sick – with an eye infection and sore throat in the middle of winter. “It’s Viral” so the doctor said last week – and has advised me to sit tight and let the virus runs its course. I messaged my husband the other day and said “I am so tired .. i just don’t have the energy to get up most mornings. Not sure why”. He wrote back to me “You are sick (ie. my germs). You have a depressed daughter. You are going through menopause. OF COURSE you are tired”. OMG why didn’t I think of THAT myself?

I think the ultimate nightmare for a Carer is when you get to the stage where you say to yourself – “I DON’T CARE ANYMORE”. And those words will be said many times over as the journey with BPD rides up and down.

I DON’T CARE – Those words sound SO bad don’t they? Makes you feel like a shitty mum who has given up. A point where you are want to look her in the eye and say – Please STOP. Please STOP with all the shit.. the hurtful words, the sarcasm, the oh i am sick so i cannot make my days work, oh look at these stories of others like me who never get better and all the negativity. Please STOP making the rest of us hurt and tip toe around you.

Baby, I love you but you seriously need to pick yourself up and do something about it. If you say that you want to try going back on medication (this will be the forth time) then we need to see a psychiatrist (this will the fifth one). How about the DBT course that is meant to be a useful tool ? Can you start that at least? Can you at least try to go for your driver’s license so that you can be a little bit more independent? WHAT? YOU want to drive into a tree? Do you understand the severity of the stress all this causing? There are SO many things I want to say but alas dare not – because BPD people are hypersensitive and need to be coaxed ..

How long is this going to go on for and when will I get to the PEACEFUL stage in MY life? How many days can I go on Carers Leave for? And please tell me to whom do I apply to?

I googled for local support groups hoping to maybe find one I can attend – to vent, to see if other parents are going mental like I am, to maybe get some strategies and ideas … perhaps hear some success stories. THIS is what I found on a state website as part of some tips for Carers ..

“Eat Well and Exercise” .. Sure no problems. Plenty of time to do all that! Being a bit cynical here but yes i get the point ..
“Get a good night’s sleep. Don’t drink coffee or tea in the evening and explore ways to wind down before bed. Meditation, listening to music or reading can help if you have difficulty falling asleep.” .. ah I have been getting this wrong – I have restless sleep and only getting 4 – 5 hours generally. Must change that habit.
“Don’t throw out leftovers – store them appropriately refrigerated or frozen for a quick meal the next day” .. wow who would have thought of that? That’s a ripper of a tip.

I know I am being a bit of a obnoxious here – perhaps some people genuinely need those tips – but where does the internet keep the good stuff?

AND then I remember – the good stuff is in me .. Unconditional Love. Resilience. Forgiveness. Faith and Hope. She is my baby – was then, is now and always will be. So I guess there is no other allotted Carer, BUT ME …

But for now – I am allowed to be a bitch and grumpy because I am sick ..

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3 months later

Week1-19 – The universe must have heard my calling because I have been in contact with “Family Connections” and since joined a Support Group and there are about 16 of us in the group. It has been difficult to listen to the stories of the other members about their life experiences handling a person with BPD. In the group, there are members with husband, wife, son and daughters (similar age to mine as well as older) whom they are dealing with.

The core features of borderline personality disorder include emotion dysregulation, impulsivity, and interpersonal dysfunction.

According to the DSM-5, borderline personality disorder is characterized by:

Pervasive instability of social relationships, elf-image, and emotions; marked impulsivity beginning in early adulthood and present in at least five of the following contexts:

• Frantic efforts to avoid real or imagined abandonment, reflecting intolerance to be alone

• Unstable and intense relationships marked by abrupt and extreme shifts between idealization and devaluation

* Identity disturbance, seen in an unstable self-image or sense of self

• Impulsivity that is potentially self-damaging in at least two of the following areas—spending, sex, substance abuse, reckless driving, binge eating

• Recurrent suicidal gestures or threats, or self-mutilation

• Marked mood reactivity

• Chronic feelings of emptiness

• Frequent displays of inappropriate or intense anger

• Stress-related paranoid ideation or severe dissociative symptoms.

Why are there cuts on your arm?

SO .. I comprehend the “science” of CUTTING .. the fact that endorphins emerge; the distraction of Physical Pain away from Mental Pain; the silent emotional cry that says “I am out of control and I need help” and even the stupidity of the act when used frivolously [when Zayn left One Direction, some girls posted on the site “CUT” to show how sad you are that he is leaving the band].

I also know that if you are serious, you go lenghtways to hit a major artery. Smaller cuts across also hurt – depending on how deep and how often you retrace your lines. And the Scars do linger .. one, two, more years or even permanently depending on what you choose to inflict at the time of pain to yourself.

These lines are yours to keep and yours to heal. Just like wrinkles and frown lines, they tell a story.

My daughter was no different – she cut as a way of releasing. [As did her sister and I when we went thorough our own dark times]. And she did this, cutting, for I would say – a period over 2 years … and I also found 4 coin sized burn marks once. God knows if she use a candle or a lighter but that would have been painful. Last year after one month’s admission to hospital, she did two deep cuts up the length of her arm – when I saw that I nearly called the CAT team. But we watched her closely for a few months and she has since not repeated that type of cut line.

She went to the supermarket with her dad two years ago. My neighbour, a solidly built tall man, from across the road happened to be there as well. She was wearing a T-Shirt that day and therefore her lines were visible. Healing, but still a tad raw; red lines with intermittent scabs. My neighbour spotted them and said, “What are those?” looking down at her left arm intently. She said nothing and walked away. Then he bumped into her again a few aisles later. This time my husband was also with her and my neighbour made another remark, “OH I see we have a cutter” … I am not sure what my husband said but they managed to evade the full story and interrogation.

She came home upset and she asked what gave my neighbour the right to ask such personal questions. I just soothed her and said people are just curious … and yes as an adult he should know better and have better manners – but, it is what it is. That was the end of that conversation at that point.

A year later we were together on a trip, discussing that fact that she might meet new people while we were away. So she asked, “What do I say if they ask me about my cuts?” Ahhhhhh .. the sensitive topic has arisen again. Well, I wanted her to THINK about what she had done and how she would have to deal with her depression / BPD pain as she grew up. Her posts about her depression on FB would also be a mark (unless she removed them) – has she thought about that yet?

How much do you want people to know? Do you want to be flippant? Do you want to tell your story? If so how much do you say? Do you say “No of your business”? Do you want to say “What does it look like moron”? What if they are genuinely concerned and they care? What if you are looking for a job and your potential employer asks you? …

She thought about it for sometime and decided that she would be happy with a medium level type response – not too dismissive not, too detailed, A One Size Fits All response. This was what she felt comfortable saying :-

“Sometimes in life you go through shit and it hurts. I have people who are helping me at the moment. Thank you for asking”.

Good girl. Nice one – I like.

Well .. I can’t see my tiny cuts anymore. Maybe that is because I am concentrating on my wrinkles and frown lines more .. and ensuring that she has no new cuts on her arm.

The cuts don’t define her or any of us. They are just markings we made on the trees we passed along the way as we journeyed out of the dark forest. Namaste.

When Cheryl Died

Cheryl found out she has cancer, leukemia, in the latter part of the 2017. It could have been triggered by the mold that was growing in the school building that she worked in. The smell that she hated so much in the building that she worked in daily made her feel so sick. She started to notice the smell around March 2017. She went to perform an allergy test and she was diagnosed as being heavily allergic to mold … so it made sense that she applied to be transferred to another building. But all blood tests showed up normal at that point in time ..

[Mold Blurb ref: https://www.poison.org/articles/2011-oct/mold-101-effects-on-human-health%5D

She went on a holiday to Vietnam around June of that year and felt the heat of the days while she was there for a few weeks. When she returned she felt exhausted all the time. It was unknown if being in a hot country, did the heat of the days trigger anything in to change in her body after being exposed to mold.

So despite having a clean record in March, she decided to re-visit the GP in August. When she said “I am so tired I could just lie on your floor” to the GP, he immediately ordered another set of blood tests for her. Turned out she had blood cancer – the marrow was just producing rouge cells. Chemo therapy was the treatment prescribed and she had two rounds by the time early 2018 came.

Cheryl was a mum I knew from school days and whilst we were not close friends, we had a common friend whom we were both close to and that was our main link. We would have Friday night drinks at our friend’s house and laugh away the “shits” of the week that had passed.

But in terms of Cheryl as a person, I always loved her smile – she reminded me of Moon Face in Faraway Tree; A sun flower beaming and she had the Tinkle Bell laughter special. And she was a popular woman with no airs about her.

After two chemos and one attempted stem cell replacement [that did not work], her body gave up – she said she just did not have the energy to carry on despite all the rallying of her friends and family. She passed away in the second month of 2018. We buried her in her home town and its been a full year since I said goodbye.

Here’s the thing – when she passed away, I knew our common friend would miss her deeply. For me, less .. I knew that I would be reminded occasionally of her as I came across things that related to her. But at THAT point I really thought about “WHO in my life I would REALLY miss if they were no longer physically present”. And it hit me – my parents, my husband and my two daughters. Yes I have girlfriends whom I am close/very close to BUT the people whom I would really feel a hole in my life for if they were gone, I counted on one hand. FIVE.

So I now try to visit my parents as often as possible who knows how long they have left .. I realized that despite the fact that my daughter is still recovering from depression/BPD and finding her way – I still NEED to also be with others who will leave a hole in my life. I need to ensure that I don’t forget that others who need me too.

And I need them for my sanity – so that I may continue to experience the balance of a normal relationships.

Cheryl had about 6 months from the time she found out to the time she passed. Her kids are not dissimilar in age to mine but they will travel a different journey without a mum to watch them complete their adult hood. I am humbled to be given a chance to see my kids grow up. And even though we/she have/has mental issues we have a chance to share the ups and downs .. preferably less downs moving forward .. please ..\

At her funeral, I learnt that Cheryl often wrote “Be Jolly” on the greeting cards that she sent – such an odd old-fashioned expression I thought at that time. It seems so under utilized as an expression nowadays. But as the days have passed, I understand that was how she lived her life – she was sunshine and she was “happy” infectious. It also represents looking at the world from lighter side no matter how hard things get.

So my dear Cheryl –

Each day I am reminded from you, that DESPITE ALL THE DARK DAYS AND CHALLENGES that I face, I am still alive to watch both my girls grow up; that I have the opportunity to make time to spend with my parents before they pass on and to cherish some more years of companionship with my husband. And that I can still choose to be jolly ..

The Be-Gratitudes

I am grateful for everyday that she is lives another day and is here with me and the family.

I am grateful for my husband [who had little clue about mental illness an its repercussions] who is a rock to me and. . my dog who is a Constant and brings so much puppy love.

I am grateful for each day when I wake up – remembering that Cheryl passed away from leukemia in March last year and will not get to see her children grow up or finish living her life.

I am grateful for my eldest – who battled her own darkness too – but is safely at studying and working now.

I am grateful for the psychologist who helped me with some strategies when it was so out of me depth and who told me to just hold and sit tight when she raged – for all my daughter wanted to do was to lash out and know that I would stick around and contain it for her.

Lastly I am grateful for my ten fingers and toes and our home – because after dealing daily with her illness; I really go back to basics and are grateful for things that I have overlooked and really taken for granted.

GRATITUDE : I have never been the type of person who would be the ungrateful kind. But as the years passed, with the full onslaught of life’s demands and acquisitions, I forgot to go back to basics. Her illness brought that aspect back into my life – along with the Nexflix boys, The Minimalists. Less is the new “More” I say …

As a mother who comes from a traditional culture of “Education being a critical passport”; doing well academically; and striving for a career to be a professional with a good title, explaining to the family members that she simply IS NOT WELL enough to finish school was painful. My husband and I were NOT embarrassed – after all, it is what is, but we had to change OUR own mindset that she has a different path as well as those who were close around us. Maybe not being able to finish school was okay as she could always take sub -courses to build her career. This wish of mine is a long way away so I cannot even plan for that now.

But on the mornings after I have been though a sleepless night and wake up with waves of anxiousness as to whether I can have a good day, I open my day with my Be-Gratitudes and it settles me. Namaste ..

We don’t communicate like we use to

Let me put it out there, I am not a lover of technology. By that I am referring to the new world of super computers, mobile phones, e-games, the endless pool of movies on demand. I KNOW technology has been helpful in many ways in advancing us BUT I think it has now tipped over to a “overuse” and addition status. We don’t call people, our friends to talk anymore, instead we message.

I always knew she was shy. But she would come home and share her day with me. I knew she had friends and she was not being bullied. She seemed fine. But she was bottling up all her fears and anxieties. As a working mum, I did not realise the extent of time she was spending on gaming after school. My husband is a believer that this generation of kids – the first generation growing up surrounded by lots of technology – should learn to self-regulate from young. This is a fundamental difference between us – I DON’T think at a young age (up to late teens) the child can self – regulate. Everything of entertainment purpose in technology is designed to keep the audience coming back for more.

The problem is if you are shy and a keeper of your feelings, having the use of a mobile phone, you have a barrier and you don’t get as many chances to develop the skills to express yourself verbally. Also you will internalize a lot of emotions and thoughts. Any e-message received that you have doubts over you ruminate whether the tone was cutting or dismissive – words that can be read over and over again in case you missed the point.

The problem is if you are shy and a keeper of your feelings, having the use of e-games means you can lose yourself in another world with anonymous players. Whilst you are communicating with the other players, this is a very aggressive form of interaction. The spoken and the typed words do not in any way resemble pleasant. The imagery of “The League” and other e-games embeds itself even at 1-2 hours per day worth of entertainment.

The problem is if you are shy and a keeper of your feelings, when it all gets too much – you lose the connection to a lifeline of talking and expressing your inner concern. It is much easier to play with your two friends – the phone and the game.

And .. we are the first generation of parents to see our kids grow up with all these new forms of entertainment. So different to what we grew up with. Whilst I understand every generation has been different is lifestyle, this generation has had more changes in many aspects – easy access to information just by Googling, more things to worry about as there are myriads of make up videos, a bazillion fashion items to shop from ..

I tell her to stay true to herself. To express her thoughts when she is bursting from anger, confusion, self hate – rather than cut herself. I remind her she is an empath like me and she needs to understand that tears are normal and that we get joy from doing acts of kindness. I tell her that Yes, I would miss her if she chooses not to live and I respect that the choice to live has to be hers, but I hope she will stay so she can take me shopping when I am old.

The problem is if you are shy and a keeper of your feelings, and you have a family history of depression but you are also on the BPD spectrum, the new world of technology can be a trigger. Well .. THAT is my take anyway.

I am glad that she can now message me “I am not feeling good” and I can call her to ask if she wants me to come home and take her for a drive ..

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It hurts to see her like this

As a mother, to watch your child go through such a trauma and seeing her not want to live is HARD. I cannot imagine life without her. But I also have to be prepared for life without her .. Just in case I cannot change her mind. Despite the fact that I don’t believe it, I have to tell myself that I am doing my best and that is all I can do. She has depression and BPD.

It feels like it has been such a long road … despite the years that have passed since I learnt about her condition, some days it feels like yesterday when I first saw her with the fresh cuts and then at other times, I feel like that visual is buried deep in my brain. But despite the passing of time, the hurt of witnessing your child’s evidence of self harm, suffer an eating disorder, cut off all her friendship groups and leave secondary school unable to complete it – is very very painful.