Saturday, 21 April 2012

The Disability Diaries (The Life of J1) : Dark Days - The Discovery

The first post in a series of 'Dark Days' for the 'Disability Diaries' Feature

J1 was discharged from hospital and the Special Care Unit, at just over three weeks old.  This was such a relief, it was all positive steps in the right direction.  I had been lucky in one respect, because we had been sent out to a hospital quite a distance from our home, I was allowed to stay on the post-natal ward for two weeks so I could be with J1 within minutes.  Once we were transferred back to our local hospital, I had to commute daily which was very stressful. 

All the time I was not sitting by the incubator, which was only when I was sleeping, showering, eating or travelling, I was like a cat on hot coals, pining to be there.  I was still in a great deal of discomfort from my cesarean and although people kept telling me that I also needed to rest, I would be up at 6.00am so that I could get to the hospital to see my little miracle.  The 20 minute journey to the hospital which pre-J1 seemed like a short commute, seemed to take a life time.  Every bit of traffic seemed like an obstacle personally placed to stop me getting to my newborn.  Leaving at night was complete torture. 

However, when we were finally released the whole family breathed a sigh of relief.  We could now start our life as a 'normal' mother and baby.  A few days after he was home we had the standard midwife check up.  J1 was doing well, I however had broken out in a rather painful rash around my midriff.  After taking one look at it she declared "Oh dear, it's Shingles."

The Midwife suggested that it was probably a physical reaction to the shock of what had gone on over the last month.  I was quite surprised by this idea, as far as I was concerned I had just taken everything in my stride, and why had it happened now, when we were home and the pressure was off?  She said it was a common occurrence, that your brain can only take so much stress before it bubbles over and a physical reaction is required to 'release' it so to speak.

I probably should have been more aware of this when 'The Diagnosis' came.  I was doing exactly the same thing, thinking I was just taking everything in my stride.  The shocking fact that I had a son with a condition called Cerebral Palsy, all the extra hospital visits and appointments that came with this news, the usual stress of being a first time, single mother with a young baby and trying to work to provide a home and nice life. 

I ignored the initial signs that I was not dealing with everything that was being thrown into my path of life.  The signs such as, only going out to work, not taking friends calls or offers of a social hour out.  The days that I would wake up from my sleep sobbing, and then shed big, hot, ploppy tears for the next 12 hours of the day.  I stopped caring about my appearance, something I had always made a big effort with, particularly when it came to work.  I would go into my office each day, but my head wouldn't be there, I would just want to be at home, curled up with my baby on my sofa sleeping.

I also picked up every bug and virus on the radar.  I tried to keep going, until I developed tonsillitis so badly it gave me a temperature of over 100.  This knocked me off of my feet for days, and combined with feeling low to start with I slipped into a deep and dark pit.  My parents had to take J1 as we did not want him to contract it.  I laid on my sofa for three days, hardly moving, without the tv or radio on, not eating and wondered if I would ever get up. 

I laid and wondered if I had the strength to get up and keep going.  I questioned if I was capable of looking after this precious and special little boy.  If I could cope with what the world was going to place on our lap.  Buried deep in fear of the unknown and feeling far from well those are the worst three days I have ever lived through. 

Once the tonsillitis wore off and I had to return to work, I went as the shell of the person that I had been.  I remember walking in on the first day back, kind of dazed and straight to my bosses office.  They took one look at me and said "Your clothes don't match?  What's going on?".  When we discovered I couldn't really string a sentence together without tears, she immediately gave me some time off with the strict instructions to go and talk to my doctor.  She had been wanting to do this for a while but didn't want to upset me further by approaching me about it.
It was difficult in the doctors.  I tried to go in to say I was run down, but he could see it was more than that.  Much sobbing of 'I can't cope' (just saying those words was enlightening) he prescribed some anti-depressants, along with a healthy diet and some exercise.  As my Mother had come along with me, he was satisfied that J1 was being safely cared by me and my family.
Leaving the Doctors I was in two minds about the anti-depressants.  I really did not want to have to take them, there was such a stigma attached, would they cause unwanted side effects?  Did I really want to be taking them at 26 years old?  Would it not lead to a longer slippery slope?  My Mother made a two good points, I could research the ones I had been prescribed, until I was happy.  If I then made the decision that I was going to take them no one else even needed to know, I could just outwardly make the diet and exercise change.
Just by taking the steps to start to try and help myself, I immediately felt better.  I had regained a small amount of control.  I had been signed off of work so I had a couple of weeks to slowly start to make some lifestyle changes, and the important thing was that I wanted to.  I did research the anti-depressants and felt satisfied after further discussion with the doctor, that I would probably only need them for the short term.  The Doctor noted that I wasn't a seemingly 'depressed' person in general.  I had 'reactive depression' which given the circumstances, was not unsurprising.
Things did not change overnight, of course they didn't.  But never since have I had three days as dark as those I experienced at the beginning.  I started taking my tablets, I made more effort with my diet and I started to think about what forms of exercise I should undertake.  It was good to have something like diet and exercise to focus on.
My journey to recovery, acceptance and getting our happy life back had begun.


  1. Oh I really feel for you reading this. Depression - both kinds - seems to be very common among special needs parents. The problems seem to be overwhelming and then when you get sick as well - which also seems to happen - it can be the last straw. Glad you found a way back and I hope you will blog more about it x

    1. I certainly will be blogging more about it, even now, to get it out of my mind and into print has helped. The next installment will be a tad more upbeat lol.

  2. In all the months I've been reading your blog, I've always marvelled at your strength and your positivity in the face of the obvious challenges that have come your way. I have wondered what it must have been like in those early days, and now I know. It must have been a very, very difficult time. Well done for getting through it, and also for being brave enough to share it too. x

    1. Sharing it is helping so much. It's is kind of logging everything that happened into a logical format. It's amazing that we have come so far that I can now look back and bookmark certain fears as dealt with. It also makes me remember on 'off' days that may come along even now, that I can get through tough times and that there is always light at the end of the tunnel.

  3. I am really taken aback by your strength of character. How you managed to cope as a single mother with a child with disabilities at such a young age. You went through such a tough time. You must have experienced some very bleak days as this post testifies. Shingles must have been very unpleasant. But somehow you came through and did everything you could to get yourself back to health again. Amazing.

    1. Shingles was so painful and it was such a shock to get it. The annoying thing was that my body, obviously aware that something was not right, dried my milk literally overnight so I could no longer pump breastmilk. The body is a marvel sometimes!


I would love for you to quack your thoughts along with me and will always try and quack right back.