Remember who you are

I have had a lot of medical appointments recently due to Long Covid and pain, today I had to go for another chest x-ray - this was easy, I've done a few now, stand by the board it's over nice and quick. However this afternoon I also had an MRI appointment for my shoulder, I've had one before on my knee, it was loud and apparently I wasn't good at staying still (despite me thinking I did great!) For that one they loaded me in feet first and I only had to go in up to my waist, so it was ok. Today as it was my shoulder I had to go in head first and as they started putting me in I absolutely lost the plot, I couldn't cope and must have visibly freaked out as she took me straight out and asked me if I was ok despite me not saying a word.

I cried, I couldn't understand what my body was feeling, I couldn't breathe. The staff were kind, they told me I didn't have to do it, that I could leave and go back to my GP. Suddenly I found myself in a really difficult situation, I have found myself in a lot of difficult situations recently, conversations I don't want to have, decisions I don't want to make. Life has been very difficult the past couple of years, especially with long covid taking its toll on me, but recently lots of counseling sessions have helped me to deal with my feelings.

So back to the MRI, I had worn my lanyard when I arrived, so the staff knew I was autistic, they talked to me, I said I wanted to do it as I needed answers to my pain. I spoke up about what I was feeling, they made suggestions and we found a solution that worked, they stayed close and talked to me while I tried going in again - this time without the cushions squashing around my head and with a sleep mask over my eyes so I couldn't see (although I kept my eyes tightly shut) and I concentrated on my breathing throughout desperate to get through it and not press the help button. I did it!

I expected to feel proud of myself, but I don't - in fact I just feel awful this evening, I just can't get myself in check. I feel uncomfortable, my mind is whizzing, I just can't get rid of the feeling of unease - so we are doing things the counselor suggests, I went in the pool to use the feeling of being in water, I've cuddled cats (because what does a cat cuddle solve?) and finally I am writing about what I am feeling so I can understand them and work it out.

I am starting to realise that I have had these feelings before, usually when I have to do something that I don't want to, when I am being forced into a situation I don't want to be in or to make a decision I don't want to make. People talk about freedom, making their own decisions and living their own lives - I didn't get that until I was about 21, when I finally didn't have any tuition fees to be paid and I had enough money from part time jobs to cover all my food and rent, when I finally lived under MY OWN ROOF. I spent over 21 years of my life doing things that I didn't want to do, being expected to live and behave in ways that didn't make sense to me because it was his rules or else (some of you will understand completely what I mean by that). I lived in fear, in denial and in hatred - I hated me and I hated my life, I didn't want to live that life.

It was around the same time that I started living my own life that I met my now husband, there was a lot of learning about how to be me that potentially led to us getting together, but there are still times when I felt like I had to "go back to Leicester to show respect to family" and perform my duties as a "good daughter", the feelings that I am having now are the same feelings I would get then - there is too much trauma there. I feel saddened, because there are so many people that I want to go and visit, family, aunts and uncles, cousins, even old school friends, but the thoughts of going to Leicester fill me with dread, they take me back to a life that was not me. I vividly recall an aunt having a conversation with me once about how she never thought I would have children and didn't think I would be x,y,z and it made me realise that growing up I wasn't me, not the real me, no one really ever knew the me that was hiding inside, desperate to get out but being forced to stay in. That's what I felt today, I was desperate to get out, but had to stay inside the machine, trapped.

Since getting officially diagnosed I have taken a stance to stop doing the things that make me feel trapped, I know some people don't understand it, think I'm rude or lazy, but actually it's making a difference to our lives. Don't get me wrong, everything isn't always perfect and I still struggle with lots of things, but taking control over saying no to things I don't want to do is definitely better for me and shows my kids that you don't have to be who others want you to be, just always remember who you are.