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.

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A smell of mucus caused a panic attack

Melody has got a cough. It is nothing unusual for the time of the year. She coughs, laughs and carries on. She doesn’t complain or moan, she doesn’t let it to slow her down.

The only reason I mentioned it is the outburst of emotions it caused in me. She knew nothing of it as she was fast asleep, with rosy cheeks and lips healthy red. I could only smell the mucus that caused her to cough every now and then and it unnerved me. My own breath was caught in my throat, my hands suddenly shaky. I noted her colour and breathing patterns, all healthy and unaffected. I stared at her, scared for her life.

I was taken back to PICU,

when Elisa was in medically induced coma and a machine breathed for her. She was unusually still, colour so pale, dark circles around her eyes. She made no sound while fighting for her life.

Instead of Elisa though, I saw Melody hooked up in those machines. In present I saw Melody breathing evenly, but in my minds eye I heard the sirens of an ambulance, the beeping sounds of hospital equipment. I smelled the hospital.

I concentrated to watch sleeping Melody’s even breath while I battled to get my emotions back in control.

My child may die before me

I have had to face the possibility of Elisa’s death many times already. We were lucky that she came out of my womb alive, we were lucky that she survived her first week after her birth. So often she has fought and survived, and I have been by her side urging her on.

If Elisa was to go to a hospital now,

I would bat an eyelid in annoyance. I wouldn’t be scared for her. We have taken Elisa to hospitals so many times that it is like taking her to see a dentist. It is nothing to be overly anxious about.

Looking at my sleeping youngest child though I found myself paralysed with fear, even though she had no temperature, she was breathing effortlessly and the only signs of a slight illness were a smell of mucus and a cough. I realised I had never prepared for her death. The mere idea of it had thrown me.

You can never be prepared for such things and I know I’m not prepared for Elisa’s either, I am only equipped to battle with her to keep her alive – but to do the same for the one child that has never been admitted to a hospital since her birth…

Being Elisa’s mum is so different than being mum to Melody

There are things that I do on auto-pilot with Elisa, things that would throw me straight out of balance if I had to do the same for Melody. I don’t hesitate to clear up Elisa’s sick, suction her mouth and check that her airways are clear. I don’t think twice for placing oxygen prongs on her or performing chest physio. When Melody is sick, I have caught myself being frozen, having to think what I need to do next.

Melody is my healthy child.

She is the child whose health I do not have to worry about. That is how I carry on in my every day life. Only a smell and a sound of a cough threw it all out and I was confronted with the possibility that this small normally abled child could fall seriously ill too. What would I do then?

I restricted myself

and didn’t allow myself to gather her close to myself and hug her tight – oblivious to my distress, she had only just fallen asleep. I swallowed my emotions and went back downstairs, where the child who I am used to seeing unwell was laughing and giggling in her room as her night carer was getting her ready to bed. I washed dishes and tried to make sense of these whirling feelings of mine but came in no conclusion.

Maybe it was a PTSD symptom?

Have you ever experienced anything similar?

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?

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