Mental Health Awareness Week 2023

For a while now I’ve felt challenged to write a blog about my mental health and how it has been affected since receiving the boys’ diagnosis. I wanted to raise a bit of awareness around mental health by being as honest and real as I can be about my own experience in the hope that someone else might be able to relate in some way and to know that they’re not on their own if they are also struggling. 

I had all intentions to write this blog during Mental Health Awareness Week which was in May but during that month I was actually struggling again with my own mental health and couldn’t quite bring myself to be motivated to write and also be vulnerable with how I had been feeling. Also, looking back at the time when I was struggling the most wouldn't have helped! However, although the officially recognised and assigned week to bring about awareness has finished and come to an end, I still think this blog in an important one to share.  

Before 2019

Before 2019, I wasn’t someone who had much (if any) experience of my own mental health being affected by anxiety and depression. I have always been someone who thinks deeply about things, people, situations etc and I have a tendency to worry or think worst-case scenario at times. I am also someone who feels strongly and emotional about a lot of things but on the whole, I would see myself as someone who is very positive, enthusiastic, bubbly and sociable.

My experience of others who have struggled with anxiety and depression was also quite minimal and my attitude and understanding to anyone who was living with these feelings and issues were very matter of fact. I might say to myself ‘they just need to snap out of it' or ‘they just need to get a hobby to take their mind off things’. Or perhaps my slightly more sympathetic view might have been to say ‘it’s fine, you just need to focus on one task at time’ or ‘it’s fine to feel low for a few days but try not to dwell on things’. I also thought that feelings of anxiety or depression were very singular and isolated to a certain issue or problem and that they could easily be dealt with, sorted out. I certainly didn’t understand the complexity of these feelings and how they could affect you mentally, emotionally, and physically in more than one area of your life.

From when Micah was about two or three years old and his behaviours were looking quite different to other children his age and different from what I had experienced with Noah, I can definitely remember starting to feel more anxious about certain situations. Micah went through a phase of being a screamer. Whenever we would walk into a building whether it was familiar or unknown, Micah would scream. Over time I would start to pre-empt this happening and the feeling of anxiety would build whenever we would go anywhere. Micah also became unpredictable in different situations and with different people. This also made my own anxiety grow.

2019

We received Micah’s diagnosis of Fragile X Syndrome (FXS) in 2019, not long after Asher was born and then with Asher being a boy, we knew there was a 50% chance that he could have FXS too. Although Asher had a sibling diagnosed with FXS and we knew I was the gene carrier of Fragile X full mutation, here in the UK they don’t test babies who might ‘potentially’ have the condition. They will only do a blood test when the child is showing signs of delayed development. So, there I was, with the knowledge that one of my children had a life-long disability and having to look at another one of my children basically waiting day by day, week by week, month by month not knowing if they would also have a life-long disability. The nearer Asher got to 12 months old and the more signs there were of some delays in his development the more my mental health started to decline.

My mental health decline and what it looked like

Avoidance

From being a very sociable and confident person I began to avoid people. I would purposefully cross the road, turn around, go a different way. Anything to avoid talking to people. In Church, I would stop going into the other room to have tea and coffee. I would stay where the least amount of people were so there was little chance of people talking to me and little chance of me having to talk to them. If people (even family) would try to video call, I would avoid it.

Lack of excitement

The excitement I would normally have for things disappeared. Getting ready for holidays, looking forward to the weekends, seeing family and one year especially I remember not even feeling excited for Christmas (which will be a shocker for those who know me well).

Sleep

I started sleeping a lot. I would do the things that I absolutely needed to do like pick the boys up from school but a lot of the time I just wanted to sleep. Everything else just seemed too hard; sleep was easy.

Feelings of anxiety

Feeling hot, feeling suffocated like I was desperate for air, heart palpitations.

On the edge

I mentioned earlier about me being an emotional person, but this was completely different. Every day I would just feel and be on the edge of tears.

Lack of focus and motivation

Having days or maybe weeks where I couldn’t focus on things – simple, everyday tasks. Not being able to write shopping lists, tidy a room, sort out washing, email or make a phone call, respond to a text message, deal with appointments, make decisions. The list went on. And it’s different to feeling like ‘I can’t be bothered to do these things’. I definitely have those days but for me it feels more than that. It’s heavy, it’s overwhelm, it’s like my brain just shuts off or down and then I’m frozen. I’m aware that things need to get done but I just can’t seem to do it.

Not being present

Sitting around the table at home with Matt and the boys and physically being present but mentally not present at all. You’re there but you’re not there. Your mind is somewhere else. Things just seem like a blur or a daze.

 

What has helped my mental health?

Anti depressants

Personally, for a while the only thing that did really help improve my mental health was anti-depressants. I never would have imagined me being the person I am with the personality I have to need prescribed anti-depressants. In the midst of a lot of my feelings I didn’t know if I was struggling/bad/ill enough to need them. I often battled with the thought that even though I was struggling shouldn’t I just be able to snap out of it and get motivated. To be honest it took me a while to accept that this was the route I needed to go down. But eventually, it did become clear to me that although I could function, I was not functioning in a way that was normal for me. By taking anti-depressants, it helped improve my mental health so that I was able to find motivation, feel a bit of excitement and enable me to try other things that might also help improve my mental health.

Making time for me

Where I struggle the most, I think is that I become completely consumed with all things boys and all things FX and disability.

Matt and I decided that I wouldn’t go back to work after having Asher and then finding out about the diagnosis. This was completely the right thing for me and us to do but it does mean I am home and always thinking about the boys, their diagnosis, their school settings, their behaviours, the things they struggle with and how I can help them. The deep thinker in me just never stops, it is constant, consuming and at times crushing. So, trying to do things for me has never been more needed.

Running, walking, meeting up with a friend, having a bath, trying to read book, browsing the shops, or taking on a small project.

Small projects

Taking on small projects that I think I will enjoy, that help me feel like I’m achieving something and give me a little bit of control.

Gardening – I love being outside in the fresh air and in the sun and over the last few years I’ve started to enjoy doing little jobs in the garden (don’t get me wrong, I have no idea what I’m doing). Taking on a small border, cutting down a bush or planting a few bulbs.

DIY – Matt and I have always enjoyed transforming the house we live in and sometimes setting myself a small DIY job like stripping wallpaper or stripping varnish of the banister as mindless as it is actually helps take my mind of other things.

Craft projects – I would never really describe myself as a person who is good at craft but sometimes if I put my mind to it I’m alright 😊 and last year it was pumpkins. Small, stuffed fabric pumpkins. My loving husband has mocked me muchly, but it kept me distracted from things, gave me a focus and gave me joy.

Setting small targets/goals

During the last few years any kind of decision or goal can seem huge, overwhelming and unachievable. I’ve had to really break things down when it comes to things like exercise, healthy eating or cleaning.

How am I now?

So, how do I end a blog like this? I guess with the question of ‘how am I now?’. It’s been four years since my mental health really went downhill. Am I all better? In the last year I have definitely noticed a positive difference and so the tempting thing to put here is, yeah, I’m doing ok – I’m fine. And the truth is today I am doing ok. But the reality a few weeks ago was that I wasn’t. I was consumed, overwhelmed, didn’t have focus, lacked motivation, I wanted to sleep more, and I was feeling sad.

So if you are reading this and you are struggling in some way with your own mental health then please know that you are not on your own.

And if you are reading this and you know someone who is, or has been struggling with their mental health, please keep checking in on them.