I am not alone anymore

As I posted before, I have struggled with my mental health recently. It could be just from pure exhaustion and dealing with change – I mean, did I mention we moved house? Yeah, we moved house. That comes with endless to do lists on top of the usual neverending list of things to do.

I had felt vulnerable and shattered.

I felt tired physically and mentally, trying to get the house sorted enough that it would be livable and not a constant trip hazard. It didn’t matter how much I managed to do during the day, I still felt like an utterly lazy and awful human being who hasn’t done nearly enough when I went to bed. I tried to be kinder to myself and change those critical voices in my head to something more compassionate, but didn’t seem to succeed.

Panic! at the shop

Then, couple days after the reported panic attack, I had another. I was shopping in Aldi and without any prompt or apparent reason, it hit me. A huge wave of pure mental anguish. I wanted to scream, cry and run out. I was at the fruit and vegetable aisles, clasping to my trolley for support. My chest felt tight, and the mental pain felt physical. It was painful pressure building up inside in me, filling me up, scrounging me hollow. It needed to release, and in its most painful state it used to be my previous impulse to harm myself somehow to give all that mental torment a way to discharge. This time, I snapped my fingers against the shopping trolleys handle and concentrated on breathing like an yogi. In while counting to three, out and counting to three. In…Out. In…Out. Pick up potatoes. In… Out… Pineapples. We need pineapples, pick two. In… and milk. Out..

I didn’t notice if people were staring at me, I paid no attention to any other customer or staff member there. It was just me, shopping, my psychological torture and breathing. I didn’t fight it, it never helps, I only counted to three and breathed in rhythm to it and picked up items into my shopping trolley.

By the time I had circled around all the aisles and was at the tills, the panic attack had eased. It had left me feeling weak, used up and unsteady.

A night out with the girls?

I got home okay. While unpacking the groceries I thought what to do next. I was supposed to go out that night with some other DCF mums, but the whole thought of going somewhere public, loud and full of other people with all that stimuli it brings about was too much. I felt another attack building inside me.

I didn’t give up straight away, as that would have made me disappointed in myself. I decided to have a shower, just to see if it helped.

Freshly out of shower, I felt better – but wobbly and weak. I could not face going out – it already felt too much having to drive to nursery to pick Melody up, but I had no other choice.

I sent an apologetic message to the other mums telling them honestly about my panic attack and that I could not come out with them that night, but urged them to go without me. They sent me sympathetic messages and I went to pick up Melody.

I never expected what happened next.

“Maiju, it is all arranged. We are coming to you. With food, wine and chocolates.”

The girls didn’t go out for dinner without me. As I couldn’t go out, they came to me. We sat around our tiny dinner table surrounded by the mess that is our daily life with surplus moving disarray, and they didn’t bat an eyelid. They brought everything with them that we needed, and we sat in our comfortable clothes, ate and drank and giggled. Even I cracked smiles and laughed, feeling more certain about myself around them. They made me feel better. They made me feel cared for, loved.

This is the best photo of me ever taken. I am sitting by that same dinner table and Melody took this photo with my phone. And posted it into my Facebook story with some smileys on it too, without me realizing what she was doing.

They made me realise I was no longer alone – I had mum friends that cared for me and were ready to change their plans to help me.

[I am aware I have never really been alone, I have friends abroad and here too, people I have met through different connections. It has been my own fault that I had not seen them that often or become that close to them. ]

How precious is that, how amazingly lucky am I?

Since that night, after those hugs and bottles of wine, I have felt steadier on my feet. I haven’t had another panic attack. I have made more of an effort to be kinder to myself, and celebrate the things I have managed to do. So far, so good. Additionally, just thinking about that night around our dinner table makes me smile. It fills me up with hope.

Hope for our future, hope for myself, hope in general.

Thank you girls.

Have you read these posts yet?

You can follow me and my family on Facebook, Twitter and Instagram too!

I’m worried of

When I write, I have to organise my scattered thoughts and feelings. I cannot just reminisce on something superficial – what I write comes from my heart and if I cannot reach it, something is wrong.

So why haven’t I been writing for weeks now?

First, I was busy trying to get the Finnish blog work – it still has a few technical issues and hiccups, but at least it is not as freaking slow as it has been.

Then I was teaching myself to crochet and knit. I picked up a pencil and drew. I cleaned up the house with an audiobook on my ears giving me a lucky escape.. I knew I was procrastinating, but I couldn’t force myself to sit down and write. Even doing a “one line a day” to my bullet journal became hardship, so it was not just blogging. 

I knew something was bothering me.

In truth, I feel guilty. I feel guilty for feeling trapped and unlucky. I feel guilty for feeling bad for myself and my family’s situation. 

As we are so lucky. We have got so much support in comparison to what we could get outside the UK. I am so grateful for everything so I keep counting my blessings – and turn the blind eye to the misfortunes. 

With all we’ve got, it felt unfair to complain. 

What do I worry about then?

My parents. 

About 60 years old and “back in business”. About half a year ago they relaunched their bakery-cafe, as the entrepreneur who had bought it off them couldn’t carry on with it anymore. My parents are hard working and enjoy the social aspect of running their business, but their bodies are not up for the task. I worry – so much – for them; when will their bodies give up on them? Will I get a shaky call from my sister telling me they’ve collapsed, had a heart attack and got into a hospital? And there is nothing I can do to help them from here, apart from spreading the word that there is a business property for sale as well as a well established company (link to my Finnish post about this issue).

Brexit. 

I am from Finland; I’ve been living in England since 2013. I have not hold a “proper job” here unlike I planned, as my child was born disabled. In other words, I am an immigrant living off benefits. I am a mother to two beautiful British children and a step-mother for one, and I’m so bloody afraid how my family will be affected by me not holding a British passport. Even if I would get the right to stay, will everything else stay the same for me and therefore for my family? Will we still get all the support and help that we’ve received so far, or will it change as I’m not British?

I feel bad as no matter how much I do, I feel like a parasite of the society.

Even if it is not possible to return to work, I feel abashed. Not only because both of us parent’s are at home. There is shame attached to the statement of “oh we are both stay-at-home-parents”. There shouldn’t be, but there is.

I feel bad as I constantly feel like I’m failing our daughter, that I’m not doing enough for her and with her.

Not to forget how much I worry for her, because of her tonsils and how we are still waiting for that tonsillectomy, how much oxygen she requires daily, how much we don’t know about her epilepsy and how her dystonia keeps bothering her.. 

I feel gutted because the house we were moved in to turned out to be incompatible for our daughters needs. This was supposed to be the forever home, the one that we could slowly make it ours. The home our children would grow up in, the one they would recall as their childhood home.
Yet we are to start all over again, the excruciating hunt for a home.

I feel guilty for having carers for my daughters nights 

I like every single one of our night carers and I always love to have a chat with them – but lately I have found it hard to go and say hello, to chat about my daughter and how the carers are doing – because .. I do not even know. Because they could ask how I’m doing and I don’t know how to answer? Because they could turn around and say I’m doing a rubbish job as a mother (they never would say anything of that sort – I’m sure) or they could judge me for how I run our house or..

I feel bad because we need them. Because if a carer wouldn’t turn up for their shift, we would be screwed. I feel bad that we are so dependent on people that are in a working relationship to us; that our home is their work place. A night by night we have someone at home who is not part of our family, to look after our daughter, and even though it’s been going on for almost a year now it .. it still gets to me. It is a weird relationship too. You cannot really be friends as she/he is working when here  and there is such thing as professional boundaries. But still that person is not a stranger nor a guest – I am trusting my daughter to them to look after for the evening and night, and as I’m so grateful for all they do I have found myself thinking how unfair it is that we need a night carer. How unfair it is but how lucky we are to have so amazing carers provided for us.

Why do I feel trapped?

There are so many factors influencing my life and how I live it – if we get a carer for the night, if I get another adult to be with me in a car so I could take the children out, if so and so. I wish it would be easier for me to go and see a friend, or do anything. 

I’ve secretly hoped for a child free moment. 

Not for couple of hours, but for couple of days. I love my children. But all I want is to be alone. Completely alone for couple of days so I can do whatever I want without no-one needing me. Or climbing all over me. Or making her alarms go off or needing to follow a strict medication timetable. I even want time off from my partner, so I would be totally attachment free. 

What would it be like to miss for my children?

I don’t know, I have not been apart from them for more than a couple of hours, the time which usually is spent doing chores or running errands, rushing to do everything before they get back. Every now and then I’ve tried to make it “me time”, but end up feeling guilty for it. 

In other words, 

even if I do not want to moan, bitch and complain, there has been loads of things happening lately and so much going on in my mind. And it felt cleansing to let it out. 

Now, please tell me

How are you, really?

Do you yet follow us on Facebook and Instagram?

I was not supposed to be that woman.

Have you ever thought of your life as a film?

A fantastic movie in making, with a start (birth) to preparation (childhood), the catastrophic problem (teenage years – young adulthood), climax (adulthood – middle age) and the end (death). 

I definitely have, and I had a great plot plan for it.

I was to have an encouraging upbringing and during teenage years, I was to find my true love, the One. As a clever young adult with the True Love on my side I would work hard  to get my degree in something that would give me the tools needed to save the world. It might have been politics, a career in teaching that is highly respected profession in Finland or a degree in journalism, on my way to uncover the hidden truths in society. Then, as a qualified professional who already had a respectable work experience under her belt, I would safely ease myself to motherhood and have an even number of children – either two or four, take a pick. While nursing my offspring, I would not stop working; family coming first, but still putting my invaluable effort in to saving our universe.

Life disregarded my plot plan. 

I didn’t find love within my teenage years, and I was certain I would never find it. Frustrated with my Life’s lack of following my will, I decided to trash it all. Instead of getting a degree, I flew off to Australia, where I spent 2 years backpacking and getting work experience in customer services and on a banana farm.

Back at home, I started studying Tourism, forgetting my ambitions for saving the planet – my plan then was to save myself by living in exotic hidey-hole, as away as possible from a normal every day life. While learning about aspects of Tourism and Business, I escaped yet to another country to do an Erasmus Exchange year.

As I had no idea, I fell in love with an English man. As shocked as I was, I did try to finish off my degree, but ended up getting up the duff. Well, as flexible and amazing as Finnish Higher Education is, I planned to finish my degree while nursing my baby. 

Well, our baby was born disabled. 

No, we did not expect it. It all happened so fast. While my waters were whooshing to the floor, midwives heard from the baby’s heartbeat that she was not doing well. As she was delivered promptly and resuscitated on the pregnancy week 33, she was then taken to NICU. Three hours after her birth, I saw her for the first time.

Two months later, 

she came home to us. We still clung on to the hope that she was just a premature baby, healthy and normal otherwise. 

We were proved wrong. 

First, she was diagnosed with profound hearing loss – she could not hear a thing, unless her ears were pressed on a loudspeaker in a heavy metal rock concert.

Then we learned she has got cerebral palsy. She might not ever walk, or even sit independently.

Before long, we were yet to find out that she had a cerebral vision impairment, which meant her brains was not great translating the visual messages her eyes were sending it. She was then registered blind.

Finally, she was diagnosed with epilepsy and reflux. Now, she is tubefed and she has a strict daily schedule of around the clock medication. She doesn’t go anywhere without a portable oxygen cylinder, unless we have an oxygen compressor in the room as she is rubbish at breathing without aid.

I couldn’t finish my studies.

I have not been even able to think about going back to work, I am very much needed to care for my firstborn. As our family has grown with yet another lovely human being, my True Love – the English man – was needed to step off the career ladder to care for his family. Even that was not enough – for all of our wellbeing it is vital to have a third adult – a night carer – to look after our daughter. 

Looking back to my life as a 30 year old 

without a degree and living off benefits, I feel ashamed. I was not supposed to be that woman. I was not supposed to be the stay-at-home parent who relied only on her husbands wages, or worse, the state benefits. I was supposed to support myself and my family financially and save the world for Pete’s sake! 

But I am in love, and I have a wonderful family. I love my step-daughter-to-be, my fiancés firstborn, and my firstborn “Elisa” and my youngest, “Melody”. 

Even though the life has not yet turned out to be how I anticipated,

I’m trying to tell myself it is not bad. And maybe I can find a new meaning, another way to make a difference in this ever-changing world.

With this blog, I’m hoping I can change the way you see other people and especially people with disabilities.

I’m hoping you will see my firstborn as a child, not as a disabled thing. Even if I’ve only described her here with her diagnoses, she is so much more than that. But that is another post.

I will be back.