Doctor Google

What a week i’ve had.  For those who don’t follow my  The Life of Reilly Facebook Page I passed my driving test!!  I cannot believe it!  

I have been incredibly anxious over the last week setting myself up for a fail, moaning to myself about how i’ll be trapped for the next 25 years in my house because I can’t drive and then went and passed first time.  I’ve been learning for about 2 years but because of my ridiculous chaotic lifestyle I have cancelled many lessons so I think we should say learning for 1 year it sounds better. My driving instructor has the patience of a saint and is also very funny which is exactly what you need when you are learning to drive age 45. Here is his details if you want a top class instructor in the Cramlington area My Drive North East.

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So speaking of anxiety some of you will know I run a little group, its secret by the way; which is ever expanding about anxiety and panic.  I’ve suffered for ever and its a great little support if you are having a wobble and someone to sound off.  It’s been a bad week for many so I thought I would cheer them up with a post about my anxiety and how it affects me and believe me it does affect me.  They all laughed at me which was the intention and said I should blog it as dealing with anxiety as the parent of a special needs child is a mammoth task.

Here’s the post with a little more of the drama:

  1. I have MS. Not negotiable.
  2. I have locked in syndrome (my biggest fear).
  3. I have a slipped disc.
  4. I’ve severed a nerve. Not pinched one. Severed it.
  5. How will I get on the plane?
  6. They’ll keep me in a Spanish hospital.
  7. Who will stay with me? I will have at least 500 panic attacks and my OCD will rage.
  8. Who the fuck is going to run after Reilly?
  9. Will I need a wheelchair?
  10. Where will I live if I have a wheelchair?
  11. Maybe it’s kidney disease.
  12. Will I need a transplant?
  13. Probably a tumor on my spine.
  14. Can I put my chin on my chest? Does it cries again as it kills.
  15. I’ve got meningitis have I got a rash?
  16. Will I be incontinent?
  17. Will I shit myself on the plane if I get on it?
  18. How the hell will Shane and the kids cope if I die?
  19. How will they tell Reilly?
  20. How will he understand?

I told you it was grim!  All the while I was googling different ailments trying to self diagnose what had happened.  Not at any point did I think I’d just hurt my back.

I eventually fell asleep thanks to my emergency cant get on the plane diazepam. Woke up at 9 couldn’t stand up, shuffled to bathroom and pittled myself again.

8 million tablets and a day later I got on the plane. I saw a doctor last week who is sending me for a scan. It’s still killing me. I have done EVERY self test on YouTube to find out if I’m terminal.  You’ll be pleased to know I haven’t found anything other than nerve damage or a disc problem that does indeed make you pee your pants.

It’s hard when you have horrendous health anxiety.  You try and get some balance and talk yourself out of ‘oh it’s something serious’ but then there’s that little nag that twitters in the back of your mind ‘leave it and you’ll make it worse’. It’s never ending.  I’m laughing to myself just typing this list but I can also guarantee I’ll be having further investigations, not with Dr Google.

 

No More Panic is a good site for anyone feeling angsty.

 

 

Panic attack 

I had a full blown panic attack tonight not had a proper one for a long time as I’ve mastered keeping my anxiety on simmer not boil. But I have so much going on this week with Reilly’s school switch visit, things I won’t mention and the looming summer holidays. No I’m not the mam that loves the holidays because we can do a, b, c and d because we can’t. Simple as that. Summer holidays are hard and are a great reminder of how I am are letting your neurotypical sons down with lack of time and attention.  You feeling my mood tonight? 🙈

Shane my husband has never suffered a panic attack before so here is my description. I feel it is relevant as probably, at a guess I’d say 95% of parents of autistic children will have anxiety. I might be wrong.

Imagine your sitting watching TV or reading a book and a feeling washes over you

A feeling like you just saw the button pressed to start a nuclear war. 

A feeling like you’re tethered to the sea bed and your face is an inch below water.

A feeling like you can see a tornado headed for your house and you can’t reach your kids in time.

A vision of every image from every nightmare you ever dreamt is played on a loop, 

your heart beats too fast, you can’t swallow 

you are weighed down by the problems of people you’ve never even met, 

you are too hot, you can’t stop shaking, you think you might be sick,

you doubt your own sanity and convince yourself that the rest of your days will be spent in this hell hole. 

 You judge your worth as a parent, as a friend, as a wife. 

You pace on wobbly legs to work off the adrenaline that’s coursing through your body and you know that it will pass but that means nothing in this moment. 

That’s what it’s like for me. I’m now exhausted but with a wide awake brain. I don’t wish to see another panic attack for a long time and my heart goes out to anyone who suffers. An easy life would be nice if anyone can get that sorted for me I’d really appreciate it ❤️

The Anxiety Society 


Before Reilly was born I was already a part of the anxiety society. That club that no one asks to join and you can’t terminate the membership, a bit like those gyms you join on January the 2nd and continue to pay for the rest of your days.

 I’ve always had spells of anxiety from around 18 but it was never a constant, when I went on holiday I’d want to come home, I’d get that jelly legged feeling and feel dizzy until I was either a) drunk or b) came home, that kind of thing.

I lost my brother aged 32 in 2003 to a heart condition which devastated us as a family, it was out of the blue, sudden and excruciating. Still is.

Thing 2

After thing 2 was born in 2006 I suffered post natal depression (PND) of epic proportions. If there had been space I would have gone into a unit but there wasn’t so myself and Things 1 & 2 moved back to my parents house where I could start medication, take sleeping tablets and actually rest.  I have no doubts without my parents and some great help from my neighbours and a couple of friends I would not have coped alone and I’m forever thankful for their help to this day. There were contributing factors to the PND. Thing 2 had a  condition called pyloric stenosis which meant he was sick constantly not just baby sick but projectile sometimes 10-15 times a day. I couldn’t leave the house without numerous sets of clothing and no one was taking me seriously and I was palmed off as an overprotective mother.  When he was 2 weeks old I received the news that an old friend had horrifically murdered his partner, my god-daughter, her brother and uncle. This man had been in my home, bought Christmas presents for Thing 1 and I was devastated and disgusted that he’d been near my child. This is no great secret revalation I have done newspaper articles to help others desperately looking for answers around PND in the past.

6 weeks later Thing 2 had surgery on Christmas Eve and I spent Christmas Day sat in the cafe at the RVI eating chips and gravy while wondering how close the nearest exit was, whether someone could remove the elephant crushing my chest and why me? I crashed spectacularly.

That’s the short version. Not surprising I’ve struggled I’ve had my share of shitty cards dealt but I’ll not bore you with the rest.  There’s other things but these are the contributing factors as far as I am concerned. I’ve managed to handle my depression and anxiety pretty well in recent years. For a long time it ruled me, I wouldn’t use public transport alone, go anywhere with friends and gave up my job but a chance meeting with an old school friend who later became my husband in 2009 was my turning point. He has had tragedy in his life too but that’s for him to talk about.IMG_0003

We supported each other , we got each other. I remember being terrified on my wedding day that I’d have a massive panic attack saying my vows and ruin the whole day. I didn’t though it was perfect. I’m still prone to catastrophising for example book a holiday see flashes of plane crashes, lose Reilly for 3 seconds = he’s been abducted then I ruminate about it and end up in a right tizzy, building a cycle of fear and anxiety.

Reilly came along in 2011, 7lb 7.5 oz of gorgeousness and it was Love at first sight. I was terrified right through my pregnancy of PND returning. It didn’t, don’t get me wrong the anxiety was still there but I think that’s my life long buddy and he doesn’t seem to be going anywhere so I crack on and deal best I can. Autism came along though quite unexpectantly, it wasn’t anything I had given any consideration and I wasn’t prepared for its effects.

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Reilly

I suppose the point to this post is that the ‘system’ the parents and children have to go through to have their child diagnosed and get them the right help is nothing short of appalling, I cannot speak for all but I speak for many. I was already capable of slipping into dark places I didn’t need a push in that direction. I have never experienced lows like the ones we faced. It can cause problems with your marriage, work, friends and family. My beautiful Thing 2 did not want to sleep at home as Reilly was so wild during the night and could scream none stop for 4 hours which was causing him anxiety at just 8 years old. Our family unit was slipping apart and it’s still not fully fixed, it’s better but it’s still got cracks.  

Being part of the anxiety society I knew I had to become incredibly strong, official meetings sometimes alone and making decisions were something I cried away from but now it was impossible. I still to this day clock the exits and windows in case I need to get out, fleeing that hot, dizzy unstable feeling that comes with a panic attack. I’ve never had to leave meeting but the fear that I will is always there.

During our experience in finding Reilly a school I don’t know how many occasions we were told ‘you must play the game’ to get the help needed. A game where only the loudest, assertive parents get anywhere quickly. I dread to think how many mild-mannered people are being palmed off to this day. Children not in the right learning environments because there’s no provision available resulting in more meltdowns, more stress at home and more families struggling.  I already felt like I was failing Reilly unable to calm his meltdowns, get him to sleep etc without now failing his future and a right to an education that is right for him. We fought, we read guides on the special needs education system and became armed with knowledge. Having a child with any disability is stressful enough without trying to navigate a minefield of sometimes a load misinformation. Too many tears have been spilled over ‘the system’ not just by us, by many.

I still take antidepressants I think I always will, I can’t polish a turd here; it’s not the best but I attend anxiety workshops when I can and I practice mindfulness. I run an extremely successful charity North East Hearts with Goals with my sister in law set up in memory of my brother. Our charity has impacted on 2 gentleman’s lives being saved which is an amazing achievement and an incredible legacy. I’ve given tv and radio interviews and a presentation in front of hundreds. I never dreamed any of this would be possible. I’ve learned to handle it better, it’s never gone away but I can’t sit back and wait for it to disappear because chances are it won’t.

I still check in at my anxiety society every single day, it’s like a second home! Typical day consists of :

  • Will things 2 resent thing 3 for taking so much of my time away?
  • Who will look after them if we are in an accident?
  • Is his transport driver an (insert horror thought here)
  • Will he speak?
  • Will he live on his own?
  • Why won’t he eat anything but chicken nuggets and ice cream?

And so on ….

To negotiate the special needs maze positivity is crucial, I hate negativity and there’s no place for it in my life. Don’t get me wrong we’re still lost but I think we’re headed in the right direction.  My kids are amazing and all 3 of them and I’m sure will achieve whatever it is they desire and we will endeavor to help every step of the way. I would love to see more help and a fairer, faster system for these families from identification and diagnosis right through to living as independent adults.

Autism acceptance is key. It’s here, it’s not going anywhere it’s just a different way of thinking. Remember when you see that frazzled parent sobbing with a child starfished probably with no pants on that chances are they’ve not slept for a year and are under extreme pressure in every aspect of their life.

Be kind as always.

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