Wednesday, May 13, 2015

grieving


Now what’s wrong with me  august 2014

 Summer school holidays are a painful time for any autie mum.  Change in routine, schools out and there are long ass days to fill. This holiday had a lot of good patches but august wore me out as L had no school at all.  His temper is now fierce and he does not seem to need sleep.  He’s just hyper, exceptionally destructive and full on 24/7
Hubby working in the background almost having a nervous break down as R, Iz and K can be very hard work also.  Than add in the twins, pure chaos.  I’m not joking we barely survived.  I was so tired and consumed by 6 very demanding kids that my walks, runs, swims dwindled.  Hmmmm a little bit of weight crept back on, ok I can handle that, and I’ll walk it off in September. 

Back to school
Thank god L is back to school as I was fit to be signed in.  September i'm still tired, more weight gain, hmmmm October, tired, again more weight gain and sore.  My body was just weird, I was sore like I had been hit by a bus, I struggled to get up every morning, and I was falling asleep on the couch by 3 every day.  I’m really not happy as I was in a great place in May and June.  What is wrong with me boohoo. 

November and December   serious stress ahead.

10 2014 grieving

The older L gets the harder it’s getting.  The temper tantrums are so severe he is biting chunks from his arms, smacking his head severely off the ground and windows; it’s heartbreaking as we cannot do anything to help him.  It’s torture to live with.  The asking for help is falling on deaf ears too.  We after a serious round of fighting received a weekend a month respite and more in home weekly, this is making a huge difference to our quality of life. 
Not only can we not cope but respite, school, and transport and in home cannot cope with him either.  They order a psychological assessment to be done, they highlight ADHD.  L is put on Ritalin to try combat his behaviours, OMG never again.  He ended up in hospital after his first ever tablet with convulsions, twitching, everything. Drs said leave him on it thou and see, we did, the hulk, the boy turned into the hulk, it was mental, he became so aggressive, dangerous, impulsive, all the things Ritalin should be stopping, the complete adverse reaction.  We stopped the meds as no one, and I mean no one could cope with him. 

Nov / Dec 2014
My dad and my gorgeous Iz
We are grieving the loss of 2 very important people in our lives, 2 very different forms of grief.
Our gorgeous Iz is moving home to Brasil.  We are heart broken, reasons and circumstances beyond our control but she is with her family and that’s all that matters.  She hates it there and cries every day to come home, she misses her non biological siblings so badly, and we miss her, I’m still not able to handle that she is gone and is affecting k very very badly.  A huge hole in our heart is left but we Skype every day, thank god but I get so upset knowing she is not here with us, she will be again in a few years but for now Skype it is.

Xmas is looming were trying to look forward to it, its so sad as Iz is not here for the first time in 5 years and xmas isn’t exactly all fun and games, long holiday period from school does not sit well with L and services less as holiday period.  We usually have melt down after melt down and K and I and Iz suffered a bit of family Xmas spirit due to this.  

Than my dad took very sick, one minute he was in a&e and next he was in intensive care, it was so sudden, my dad passed away dec 21st 2014, you cant imagine what it is like to loose someone at this time unless you have been there.  Trying to pull yourself together to try having some sort of Christmas for your kids is horrendous.  Than add autism stress and typical teen shite and a very attention craving 5 year old and the grief of loosing Iz on top, I really don’t know how we survived it.  Esp. with L’s behaviour at is maximum worst.  Don’t even try imagining what two possibly autistic toddlers were like on top of that, and a hubby working full time with a very stressful job.

L was horrendous, life with L was near impossible, after almost a year of me ringing peads etc, we decide to try a new med, L was so bad in the peads room the pead finally saw what we where living with,  He is now on Respiradone and it is a miracle drug for L.  He is happy again and calm, smiling, sleeping (on and off but better than not sleeping at all like before the meds) L is now to go see a psychiatrist and be assessed for new meds with the respiradone.

Life was getting way too complicated for us at home, I was exhausted beyond belief, G was working 5 days a week, 1 in Dublin involving a 6 hr commute and an over night stay, he was at breaking point, I was at breaking point, something had to give, G’s job was the prime suspect.  G applied and was granted for 2 years carers benefit.  This would mean our finances would take a huge hit and we would just about make ends meat but it was becoming impossible for me on my own and for him to carry on the he was. 

Jan 2015
Since taking carers leave we do make ends meat but it’s tough, but yes, it was the best decision we ever made.  G is able to attend appointments with me, do the school runs to give me a break, we get to spend quality time as a family together, were rarely home, we have the kids going here there and everywhere and just trying to have as much fun in our days as we can, Its tough financially but id never swop things, were just so happy. I never truly realised how busy my life was until G was home to help me and split the appointments, school runs, after school activities and house hold crap that comes with every day life.  I genuinely look back now and just can’t understand how I managed it all on my own, it’s just mental.

Feb 2015
I had a permanent creek in my neck since December, I put it down to living in hospital and travelling and hr to and from hospital every day sometimes twice a day when my dad was there.  I had also had insomnia so thought the pain down to that; I was almost falling asleep at the wheel of the car, I also had this itch all over my body, like burning, it was so bad I was bleeding myself from scratching, I cried when the gp said it wasn’t some sort of scabies, at least you can cure scabies.  The itch was the worst symptom and was driving me clinical. The Gp prescribed the usual, paunston, didn’t work, define, didn’t work, antihistamines, didn’t work  One day I went in so much pain, my actual Gp was there not the other Gp that’s there cause your own is booked solid, she was like straight to hospital with you.  I had the weirdest headaches, like hot than ice cold flushes in my brain, I couldn’t move my neck and shoulders and I was so sleepy.  The hospital had a specialist on and he told me it could be one of 2 things, fibromyalgia or MS and id need an mri and lumbar puncture,( still waiting on both lol),  I was put on these tablets called lyrica, I agreed to the lowest dose as I’m brutal for tablets and apart from eltroxin and b12 I take nothing.

March 2015
A second visit to specialist and he was happy to call it fibromyalgia and treat for same, he still wants to test for ms but just so they can rule it out and wants me to have a ct scan also.  One of the days G was in Dublin and I had to get up at 5 am to L, he was screaming as usual, I got him sorted and I went back to bed.  He got up again at 6, as I was coming down the stairs my mind went blank and either I forgot how to use my leg or my leg just stopped working and I fell head first down the stairs, I smashed my face quite badly off a stair gate than tiled floor full force.  I thought I was ok and carried on although in a lot of pain.  I felt woozy but thought was normal considering, I went to see specialist the next day, he wasn’t very concerned although I was feeling woozy again and a bit sick.  The next day I couldn’t stand, the room was spinning and I felt so so sick like I could throw up.  Even laying in bed the room just kept spinning.  I rang my Gp, stay in bed you have concussion.  Yuck I never want to experience that ever again; even thinking about it makes me feel woozy,  I stopped taking the lyrica but am now left in pain every day and my arm feels like its disconnected and stops working from time to time, I also suffer horrid tiredness and insomnia is back,  My neck pain comes and goes, but the itch remains, something to do with nerve receptors yada yada butI’d rather be in pain than whacked on tablets loosing all control of my mind and body, my life is too busy to be off the ball for even a split second.

April 2015
Ps I still hate teenagers
A friend of mine invited me to go on holiday with her, at first I was like, oh I wish, not a chance as over run with appointments and bills.  Than I thought about it some more and was like hmmmm maybe, than next thing I knew we where booked and ready to go.  The Algarve here we come.  Didn’t realise how much I needed this break until I took it. I knew I was coming home to twin’s dx, L’s psychiatric assessment, K’s stuff etc; so I made the most of it.
We had a great time, beer cocktails and drinks by the pool, stroll to the beach and back to the pool.  Total recharge, I’ve decided I will be doing this every year from now on. 

Normally we go away as a half a family unit  ( Me, G K Iz and R just) to Germany or somewhere in ireland every year to family, we pack so much in while there for the sake of K Iz and R that were exhausted and needing a holiday by the time we get home.  Its getting harder to do this thou and financially impossible too.  We need to cut it to every 2 or 3 years now.  My self and G decided we would both take a separate holiday each year, me with my friends, him with his friends than mini trip throughout the year finances depending.

This pretty much brings me up to date to my first blog post, How the hell did I get here, one pox of a journey, I’m not sure how I wasn’t or haven’t been committed yet or committed murder even.  There is so so much I have purposely left out, so much I forgot and so much more my brain just can’t process to talk about it.  Life with k is near impossible but again she’s a book’s worth, R is the easiest of all 5 and now this new autism journey is beginning I’m just waiting for what it brings.  If I’ve survived the last 8 years I’m sure there is more years in me.  I hope……








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