The Year from Hell and what I have learnt.

by - Wednesday, November 28, 2018

Well, I haven't done a post in a little while and there have been lots of reasons for that. I can't always share every single thing that goes on in my life because I have to respect other people's privacy and I am conscious of relaying other people's lives just through my own eyes.  However, blogging has always been a little bit of therapy for me.  It helps to get the thoughts and emotions outside myself, so I thought 'what the hell, I will just do this' (and with permission from family members).


The title is a little bit dramatic but nonetheless, pretty accurate. I've written before about health problems in the family and the past year has honestly seemed like a blur of hospitals and sickness.  Since our gorgeous granddaughter was born around this time last year, our daughter Síomha has been through so much. Two bouts of mastitis after the birth (she had to be hospitalised again).  All the antibiotics triggered a flare of her Ulcerative Colitis and it was pretty bad. Queue yet another trip to A&E where she was admitted. Unfortunately, she was incorrectly diagnosed and not assigned to the Gastro team, who are very familiar with her complicated condition.  This resulted in her situation becoming much worse.  I think one of the most heartbreaking moments of this year was seeing her literally unable to walk to the bathroom from her bedroom, so bad was her pain and weakness.  It still makes me want to cry.  So it was back to A&E and another admission and all the stress that goes with her being in hospital.
During all of this, we had to, of course, help out with the care of Mara, alongside her Dad and other grandparents.  This is always an emotional joy but being older, I definitely find it physically quite exhausting!
Meanwhile, I was struggling with the symptoms from my carotid artery dissection, which always flare up if I'm stressed but a new symptom seriously freaked me out. I lost vision on my left side whilst I was sitting in work. It only probably lasted less than a minute but knowing, as I do, all the signs of stroke, this was a big red flag for me.  I went to the GP and having discussed my symptoms and showed a photo of me with droopy eye and face, he referred me to Tallaght for a Doppler test. Luckily I got an appointment fairly quickly and the results were good so I felt briefly happy but they referred me back to Naas where I was originally seen when I had my dissection. Waited for the appointment, not too worried but then when I did finally get it, I explained symptoms and the specialist just announced 'you may have had another dissection'. I can't honestly convey how shocking this was, it took a long time for me to get over the trauma of being very close to death and to have it so baldly reintroduced to my life was extremely upsetting.
I had to wait a considerable length of time for an 'urgent' MRI and MRA. All the old anxieties came back and I felt incredibly stressed until I finally got the scans and got the all clear. No new dissection, just crappy symptoms that are now a permanent feature in my life.
In the meantime (and I'm not being exactly chronological here because all the events seemed to meld into one) Síomha broke a bone in her hand so yet another visit to A&E. More helping out with Mara and trying to get her through. She also had a really bad eye infection because she was so run down.  She then developed an abscess which is another aspect of her condition and she needed surgery.  Unfortunately the abscess didn't heal properly - having a compromised immune system makes everything so much more complicated :( She is now waiting for another surgery which is fairly straightforward but she won't be able to lift anything heavy for about 8 weeks.
Also this year, Izzy faced an allergy egg challenge - she has long been allergic to egg, as well as nuts, peanuts, chick peas, sesame, lentils and peas. Allergy tests done this year showed that her allergy to cashew had gone down and a challenge was suggested. However, given that it was unlikely she would ever be able to eat cashew due to cross contamination, I asked if we could do it with egg instead and the hospital agreed. We went to Tallaght hospital and she sat in a chair in an open ward, so that the staff could observe closely at all times. She reacted to the first bite of egg but it resolved itself and the final upshot was that we could try desensitisation at home which was a very long process involving her eating tiny portions of hard sponge fingers and increasing the dosage bit by bit.  She seemed to be able to cope with a small amount but the final result was not wholly positive. Izzy herself found the process onerous and further discussion with the hospital revealed that they felt she would always be allergic.  Izzy felt that it was pointless to continue with something that couldn't guarantee her being safe with eggs and I totally saw her point so we decided to discontinue.  It did feel like yet another disappointment though and even the challenge itself was pretty scary.
All of that brings me almost up to the present day and we got through our lives, work, and everything until the point that Mark had a mental health crisis, with insomnia, resulting in anxiety and depression.  He has been very open about his mental health issues which is so great because it is something that needs to be brought out in the open.  I strongly feel that all the accumulated stress of the year brought him to a point where his body told him to just stop. And he needs to heal and feel better.
I have had to take on a lot of extra driving and other stuff in the last while and it has taken its toll on me.  I think I have been operating on adrenaline most of the year, living in a fight or flight state and my own body basically gave up also. My fatigue and CAD symptoms came back with a bang. I have honestly felt like I've been hit by a train.  I was barely functional last week, doing only absolute essentials and sleeping. But even sleep hasn't helped, the fatigue is completely all consuming and I only hope that it will lift soon.

So what have I learnt from all this?
Firstly, sometimes we have zero control over the crap life throws at us and there will be times where you just try to get through and do the best you can.  Which brings me to the second thing - I have learnt that trying to be perfect and on top of everything just grinds you down.  Sometimes you just have to let go, let things slide and try to find some little portion of peace to recharge your batteries.
Another thing I have learnt is who the truly good and kind friends are. It has been a lonely and hard year and to the small group of people who reached out to me - you probably will never know just how much that meant to me.  For me, feeling that someone cared gave me sustenance that I badly needed and made things just that little bit less shitty.
I'm not going to jinx everything by hoping that next year will be better but I know that I'll keep on trying all the same!

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7 comments

  1. it sounds like you've all had a very tough time of if this year - I hope everyone's help improves in 2019. There's a massive connection between long term conditions and mental health and wellbeing. I hope you can squeeze some selfcare for you and your family too. take care love Bec xx xx

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  2. Oh my goodness, this sounds like an absolute beast of a year! Gosh, I am so glad that you’re as to look back and think about the good that may have come from these events; amazing that you can see the positives. It has made me think about my year and perhaps encouraged me to b a little less grouchy.

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  3. Not the best year by all accounts. Egg allergies can be a tough one to deal with, as egg is in much more food items than we think xx

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  4. I am so sorry to hear you have had such a stressful year. I’ve got everything crossed 2019 is less eventful and calmer for you

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  5. Oh why does life have to throw so much at us at one time, sometimes we just have to have a break. Good point about trying to be on top of everything all the time xx

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  6. I'm sorry to hear 2018 hasn't been a great year for you. I hope 2019 is happier and healthier for you all x

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