As this is my first blog, bare with me. I wanted to tell you how I went from running around with my kids, to wheeling after them in my wheelchair (although they are still faster than my powerchair).
Before having children I started with OCD as a child. Dermatillomania to be exact. Its a skin picking disorder caused in my case by anxiety. From there my mental health was affected. I started feeling depressed at the scars on my arms and legs and embarrassed about what others thought about me. In high school it only got worse due to been bullied, but I got through it and at 18 I met Chris, my partner, and found out I was pregnant. After the birth of my son, Charlie, my depression eased a bit and I loved been a mum. Chris had 3 children before I met him so it was busy at the weekends. I struggled with IBS but other than that I was coping fine.
At 21 I found out that I was pregnant with my second child. I had her at 22. Her birth is when my health declined. The midwife had accidentally left a piece of placenta inside my womb, and without knowing I was on my way home the next day. I gradually felt worse as the days wore on, and over 2 weeks after leaving an ultrasound showed what was wrong with me. I ended up in hospital with sepsis and wasn't allowed to be with my new-born daughter for a week. When I got home I wasn't the same anymore. I had been given medication in hospital to stop my milk as I had mastitis, which meant I felt like I was useless to her. My depression got worse and worse to the point where I could have just walked away. It was when I put her in her pram in the living room and walked out of the door that I realised I needed help. I was diagnosed with post natal depression and given medication and counselling to help.
Although my mental health was been dealt with I was starting to become exhausted, in pain a lot and not sleeping on a night.
The sepsis had caused a knock on effect. In the following years I was diagnosed with myalgic encephalomyelitis. Also known as chronic fatigue syndrome. I was in pain constantly and so exhausted that parenting became hard. I felt like a failure, my body was stopping me from been the mum I wanted to be. I was diagnosed with fibromyalgia on top of M.E and I hoped that was the end of it. If I could just get the right meds or treatment I could be a proper mum again.
Following my diagnosis of M.E and Fibro, my mobility declined and I began having to use crutches and walking aids. The pain was getting worse and I started taking stronger painkillers, morphine, co-codamol etc. Unfortunately any meds I was given had an effect on my IBS. It was like I had to deal with the IBS flare ups or the pain. Catch 22. I tried so many different medications in the hope that one would help without all the side effects.
The beginning of December 2017 we took the kids on a day out. It was so cold but we wrapped up warm and the kids had a blast. I didn't realise it at the time but this day out would cause me a month long flare up of pain which I never fully
recovered from properly.
In 2018 I had what I call a breakdown. The way my neurologist describes it is my brain couldn't cope with the stress and pain. It just shutdown. I had to learn to talk properly again, I couldn't walk (my brain just wasn't sending the right signals to my body) and I couldn't feed myself properly due this. I was having muscle spasms constantly and absent seizures. last year my neurologist mentioned Functional Neurological Disorder. I am still awaiting confirmation but need to have some more tests. I have also been told by my neurologist its very likely I have Dystonia. A movement disorder that explains the muscle spasms etc. Due to coronavirus the tests and official diagnosis are taking a long time.
Right now I am on medication that seems to be helping a bit. I am wheelchair bound (although a powerchair so I do have a little bit of freedom) and housebound most days.
But I keep going for my kids. If it wasn't for them I don't know where I would be, they are my life.
If you have read this far, thankyou. Now you know my story and where I am. I am coping with what I have been given, and my kids are the best medicine.
Love and Hugs
Disabledmummylife!
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