Wednesday, 3 September 2014

Best Holiday Experince So Far!

I have been meaning to write this blog post for a while, however, I had to make sure I had booked my own tickets, and disability pitch before I wrote this and there is a rush on tickets, meaning I couldn't get my own!

This year, I took my children on their second ever holiday.  Last year we went to Devon, and this year we went to Dorset.  We actually went an event known as Camp Bestival.  For those who don't know, this is the 'family' version of 'Bestival' which is held on the Isle of Wight.  Camp Bestival is actually held in Dorset, in the grounds of Lulworth Castle.

Last August, as a spur of the moment thing, I booked tickets, I paid the up front deposit, and started to pay the weekly payment plan.  Camp Bestival is, as I said, a family festival.  Therefore requires camping.  A tent. My initial thought was 'uh oh what have I done'.  The second issue was that in order to go, I needed to be able to drive....s**t.....I hadn't even started lessons yet.  The third issue was to throw in taking Rowan, with his needs now drastically different to last year's holiday.  What the heck had I just done.  

But that was only an initial reaction.  Once I had gotten over that, we formulated a plan.  First step, driving lessons.  Now, for those of you who read my previous post, will know that in September we had a clinical error that turned our lives upside down, and this, therefore, meant that I couldn't take driving lessons for a long time.  I started to learn to drive towards the end of January.  With several hospital stays with Rowan, and the school holidays, I managed to go from a 'non driver', to pass my theory test first time, to passing my driving test on the 19th May.  That solved one problem!

Now the camping problem.  We didn't even own a tent, nevermind having never been camping.  I had never put up a tent.  I had absolutely no idea what I was doing, but with the help of some friends, we got a tent, and sleeping bags, roll mats, air beds, and that was pretty much it.  We booked the local campsite, which is literally a 5 minute drive from my house, for our first run.  We decided to go (my friend Denise and I) and put up this tent while the big kids were still at school, we would do all TPN at home for now, and see how we went.  It seemed to work.  It took us 45 minutes to put the tent up, not bad!  And it really wasn't as difficult as I thought.  The weekend went well and the children LOVED it.  Obviously the first night they were very over excited, but the second night they fell asleep, and they really loved it.  We had rain, and the tent stayed up.  We had thunder and lightening too, and it really was ok!

Because the first weekend was a success, I, once again spontaneously booked a weekend in Kings Lynn Camping.  This time our shopping list had grown, a gas stove (for coffee!! and porridge for breakfast) a carpet for the tent to try and keep it a bit warmer and keep the dirt more contained, a camping table and chairs for the children to eat at (after a few spillages), coffee mugs, metal cutlery, a light for at night time.  So, the second time we went, to Kings Lynn, we had a few more items, and it was even more of a success.  It took us 76 minutes total to put the tent up, and unpack everything, no messing about, and that was WITH the children around.  On the Saturday we spent the day on the beach.  The first time I have ever taken my children to the beach (the time last year doesn't count as the weather was horrible).  We went to Old Hunstanton beach, there was no 'tourist' stuff.  There was no arcade, no pier, no donkey rides, nothing.  Just sand....and sea.  I was slightly concerned how this would go, as there is nothing to 'entertain' my children.  But.....with buckets and spades, a load of sand, and some sea, shells and stones, we spent several hours on the beach, and the children LOVED it, they said it was the best holiday EVER.  My children are so easily pleased!  They built the first ever sandcastles, we buried Katrina in the sand, Ayden jumped over waves in the sea, and Rowan got over his fear of sand, sort of (but still will not go in the 'dirty sea water, it's got STUFF in it'.

So then, just before the children broke up from school, the preparations began.  Only, Rowan had to throw a spanner in the works, as usual.  On the last day of school Rowan landed himself in hospital, very unwell, with a line infection.  He had not had a line infection for a couple of years, but, with something going practically into his heart 24 hours a day, and having IV paracetamol 4 times a day for a year, that risk escalated, and it happened.  He was really poorly and for the first time in a year I had been reminded once again at the fragility of life for Rowan.  With thanks to a friend, once again, I didn't miss Katrina's leavers assembly although it was close!  She was leaving primary school, and the whole thing was VERY emotional!  Anyway, Rowan was unresponsive all day, and I was very worried about him, he was very hot, and he was hallucinating, he kept calling me Katrina, he was delirious, he was convinced he had climbed to the top of the IV pole, and slid down it, but it was ok as he held onto the TV.......At 730pm the nurses changed over shift.  We had a nurse who Rowan knows, and remembers, all of a sudden he wakes up, and he is FINE.  He asked me if he missed snack.  But he wasn't all that bothered that he had missed it (he started to show signs of being unwell just after 7am, and was in hospital by 815am).  He asked the nurse if she could make him a cup of tea when Mummy went home, and then play his ipad for a bit before he went to sleep again.  And this is exactly what he did.  The next morning I went to the hospital and he was absolutely fine.  We were discharged, and spent the next couple of days sorting out IV antibiotics, but we came out, with twice a day antibiotics at 12pm and 12am, for the next 10 days.  We could still go on holiday.  Phew.

Once we had been discharged, the plan was on to start organising and packing everything ready for our holiday.  The children were excited, as well as anxious, as was I.  The practise runs had gone well, but Rowan was 'well' (for him anyway) those times, this time the risk was that he went downhill again very quickly, as could happen with a line infection.  However it was a risk I was willing to take.  We were in disability camping, and I had everything crossed that he would be ok.  If not, we would just have to go to the nearest hospital and deal with it from there.  We drove to Southampton the night before, and stayed in a hotel.  My children have never stayed in a hotel before and they were so excited, as well as confused at how the whole concept works.  Especially around breakfast!  Just after breakfast (which apparently had fruit for pudding according to Ayden) we left and drove to Lulworth Castle.  It took a couple of hours, but it was ok.

Once we arrived we pitched the tent.  It was hard with lots of anxious children around, lots of questions, and being tired ourselves, but we got there in the end, after dealing with a meltdown.  We went and got all checked in, wristbands obtained, and off we went to explore, and find something to eat.  I have never seen so many gluten free options!  I was so happy!  (Apart from the pizza that was repeatedly contaminated on one evening).  There was however, a big big issue with Rowan's TPN fridge.  They had issues delivering it (with TPN), they wouldn't let the driver on site as he had no pass.  Then when he finally managed to deliver it, the medical tent (after it had been signed for) decided there was no room for it, and we had to find an alternative.  So, thanks to Alice, who did an amazing job, managed to obtain an electric hook up cable, and get some very nice medics to bring the fridge from the medical tent, down to disabled camping, I can tell you now, that was a long, heavy, hot, walk!  So we had the fridge in our tent for the week. Once again the kids were overly excited and didn't fall asleep until about 11pm.  But we were on holiday!

Cameron meets Michaela Strachen!
The rest of the week was filled with fun, IVs, more fun, sleep, more fun, sunburn, more fun.  There were live bands, comedy acts, fantastic food.  The kids had an absolutely fantastic time.  The atmosphere was amazing.  Cameron got to meet Michaela Strachen.  Katrina went to watch Sophie Ellis Bexter.  James played.  Ayden and Cameron were glued to the jousting.  Rowan absolutely loved Mr B the Gentleman Rhymer, I have never seen him so happy!  It was the best holiday we have had so far, by far.

From a disability point of view, it was great.  It was in a field, which sometimes caused issues with the wheelchair, but Rowan's front castors are quite small, however, it wasn't impossible!  Being in disabled camping meant we were close to toilets, and showers, and water, and we had electric hook up, and there were less people, it was more organised (we saw the chaos in the 'normal' camping!!!!).  No one really paid attention to the disabled toilets being for disabled people, which was frustrating, apart from, by the main stage, the 'disability viewing area' was manned at all times, and was ONLY for people with the disabled access wristbands.  We sat there a few times, chilled out, Rowan napped.  I felt relaxed.  No one cared that I was doing IVs in the middle of a field.  No one stared at 'the kid in the wheelchair' or with his drainage bag on view.  Nothing was too much hassle for the staff there.  He was just Rowan!  Ayden could run around and be himself, and I didn't have to keep telling him to calm down, or be quiet.  The children slept better, I am sure thanks to all the fresh air (or methane from the toilets, especially the compost toilets!)

We all came home, very very tired, it took Denise and I a LONG time to recover, but we are already planning for next year, and we have already booked the tickets, and are paying the weekly payment plan.  It was an experience I definitely want to repeat, and the children are already looking forward to.  It wasn't the cheapest holiday on earth, but it was definitely money well spent!  Obviously eveything inside is more expensive, but they can do that!  Next year we will do a BBQ one night, and remember to take our snacks with us (not leaving them in the tent!).  We will also look at getting our own electric hook up, so we can have the fridge in our tent from the get go.  We will also be looking at getting our own trolley, to pimp up, and so Rowan can rest better next year.  Also looking at getting another tent for Katrina to stay in, to give her her own space, next to ours.

Have IVs, will travel!
Not everyone is a morning person
Everyone can be themselves!

I am thoroughly looking forward to next year already.  I am also looking forward to taking our tent and paraphernalia on some more camping trips!  We are however, fair weather campers, but, 3 years ago I would never have dreamed about taking my children camping.  But, it really does work, fresh air, space to run around, no having to be quiet, everyone can just be themselves.  Just always remember 'there are no secrets in the tent'!



Monday, 25 August 2014

Clinical Errors.

One of the main reasons I haven't blogged in the last year, is that, at the end of September last year, Rowan underwent a procedure at Great Ormond Street Hospital, and there was a clinical error.  A clinical incident.  Whatever you want to call it.  Lots of people have asked me exactly what happened, and it's taken until now to talk about it, from my perspective.

Now, I know this test is run quite a lot on complex gastro patients, and what happened to Rowan has NEVER happened before, so I don't want to scare the crap out of anyone who is then told their child requires this test.  A year on, they believe part of Rowan's undiagnosed genetic condition is part of the cause for what happened, but, at the same time, it was not all of it, and I didn't know about it until a few months ago, neither did the doctors.  I do not change my opinion of Great Ormond Street Hospital either.  It's a fantastic hospital that have saved the lives of 3 of my children.  If it wasn't for them, I wouldn't have the 3 amazing young boys I have today!  We are all humans.  Accidents happen.  Mistakes happen.  It's a fact of life.  This accident has had a huge impact on Rowan, and still does.  But it was still an accident.

September 2013 Rowan and I checked into hospital for a 2 night, 3 day stay.  He would miss a few days of school, and be back ready to go on the Monday.  The plan was to go to Interventional Radiology and insert a probe down his nose, through his stomach and just out the other side.  This would then be hooked up to a big computer for several hours, and it would record what the muscles and signals in his gut were doing.  Or that is what I understood.  This test is fairly routine amongst complex gastro patients like Rowan.  It's called an Antroduodenal Manometry (ADM).  They tried in the May before to put the probe in, and it wouldn't go.  So they needed to try again to try and understand exactly what Rowan's gut is doing.  This was the reason for the admission.  We had had a few tests to try and work out why the probe wouldn't go in the first time, and everything came back 'normal' so they decide it was just bad luck and they would try again.

On the Thursday, Rowan went down to IR (Interventional Radiology).  I don't count Rowan's anaesthetics, it's not a statistic I necessarily want to be that aware of, but let's just say in his 5 years, it's a lot.  So he went for his special sleep watching Peppa Pig on the anaesthetists iphone.  It's never easy to let them go when they sleep, and it never gets easier, but we all have our own little coping mechanisms.  I always have the same little routine.  I go back to the ward and grab a shower (no matter what time of day it is!).  I then treat myself to a 'posh' coffee (as in not hospital coffee) and toast.  I eat them, in my own time, while reading a book or something.  I'll update my facebook status, check my emails, play those crappy facebook games on my phone.  Those kinds of things.  After 3 hours, I knew they hadn't got the probe in.  The nurse let us know it was time to go and get him, and I went down with one of the ward nurses and she told me we'd be going back to our ward.  I knew the probe wasn't in for definite at this point, as if the probe is in you go to a different ward for the day.  So off we went to IR, to collect him.

He was a bit quiet, and usually the first thing he asks me is what's for lunch/dinner/snack etc.  While he's still half asleep.  He didn't ask at all.  I just assumed he was a bit older now and he'd started to understand you have to wait a bit.  But he didn't ask.  For several hours, he just laid in his bed and watched TV.  Usually after 15-20 minutes of coming round from an anaesthetic the nurses are chasing Rowan around the ward to do his observations (temperature, heart rate, blood pressure etc).  I started to worry a little bit, he hadn't eaten or drunk or even asked!  The nurse and I agreed maybe they had been a bit over zealous and he was sore, so we gave him ibuprofen.  Well......I gave him that, with a flush (water to clear the medicine out of his tube and into him) and he screamed.  Very strange.  But he calmed down quick enough so we just assumed he was very sore.

He spent the next few hours just napping, by this time he had asked me to get into the bed with him, and have a cuddle (again, this is unusual he HATES me in his bed!).  But I went with it, still thinking he was just feeling a bit sore and a bit sorry for himself.  At about 530pm (so 5 1/2 hours after coming back from IR) I asked to see the consultant.  The registrar had been in a few times and I just wasn't happy with the response I was getting from him.  He talked to me about trying again with the probe endoscopically the following day and I informed him that I would not be signing the consent as Rowan was clearly not right at the moment.  At no point did he take me seriously that there was something not quite right with Rowan.  However, the nurses, who know Rowan extremely well, were not prepared to accept the blase response.

So, in the consultant came.  I explained that he was not right, and I didn't understand why.  So the consultant suggested that maybe he was just exhausted as he had only had half of his calories that day as he hadn't eaten, or has his milk feed or anything.  That made logical sense to me, so just before 6pm, the nurses and i got him some marmite on rice cakes, and cereal, and jelly, just what he had asked for (after coaxing).  He sat up to eat.......I have NEVER heard my child make such an ear piercing noise.  It is a sound that haunts me to this day.  The nurses and the doctor on the ward RAN into the cubicle. They told me not to feed him, slowly lay him down and make sure he laid down.  I had no idea what was going on.  He would not stop screaming.

The next 6 hours was a bit of a blur.  He constantly screamed until he was so exhausted he was sleeping in 5-10 minute bursts.  Doctors came in to review him, but kept scratching their heads.  They ordered an x-ray.  At this point I didn't know what for, all I could concentrate on was trying to console and inconsolable 4 year old.  Nothing I did helped him.  The nurses were able to give him IV paracetamol but it just didn't touch the pain.  He kept screaming that his tummy hurts.  He was begging me to help him.  The x-ray came (after arguing that he could not go to the x-ray department.  He had the x-ray, but it was then decided he needed to be sat up for an x-ray.  Bearing in mind we were told not to sit him up, so I refused, as the doctor was very adamant.  So instead, they asked me to lay him on his side for 15 minutes, and then they would come back and re-x-ray him.  He didn't want to lay on his side.  I pinned him (literally) on his side for 15 minutes.  Counting down each minute at a time.  The nurses were absolutely fantastic.  Constantly checking I was ok, trying to get him some more pain relief, trying to get hold of doctors.  There was no response.  It was just the nurses and I, and we were both completely powerless, with a child that was clearly in some intense pain.  To give you an idea, Rowan has an incredibly high pain threshold.  When he had laproscopic surgery, he had NO background morphine, and only had 4 pushes of morphine the entire time and was sitting up unaided within 48 hours of surgery.  The pain team said he must have a high tolerance.  So, at this time, the way he was behaving, I knew it was the worst pain he'd ever experienced.

I had gone into some kind of 'survival' mode.  If I'd really thought about what I was doing, pinning my son on his side, while he screamed in agony, I would have fallen apart, instead, all I could focus on was finding what the hell was going on, so we knew how to help him.  To do that, we needed the x-ray.  Finally that time came, and the x-ray was done.  The radiographer told me it would take about an hour to get the report.  So I went back to cuddling him, and trying to calm him down, unsuccessfully.  The verbal report was in, it looked ok.  More confusion, still a child in pain with no idea why.  

The hours past, the pain team came and went, there was a lot of confusion over what was allowed and what wasn't, and who said what to whom.  Consultants came, night doctors came, surgeons, registrars, fellows, everyone.  In and out, lots of scratching of heads.  Then it was time for shift change, all the doctors changed over, all the nurses changed over.  The two nurses that were on that night, were not taking any of it.  They rang, and rang, and rang, and rang.  All of a sudden, just before midnight, there was a surge of people in and out of the cubicle. By this time Rowan was sleeping in 5 minute intervals.  Literally.  He was hooked up to all kinds of monitors, that constantly bonged, his blood pressure was sky high, his heart rate through the roof, his sats dipped, then were ok, dipped, then were ok.  The nurses put him on oxygen to try and help lower his heart rate and stabilise his blood oxygen levels (sats).  There were surgeons, and doctors from the pain team, and a whole new load of people that I just couldn't tell you who they were.

Then.....there seemed to be a lull.  A surgeon came in, he kicked everyone else out, it was that surreal calm before the storm again.  He said 'Hi Mum, I'm just going to have a quick look......' he put two fingers just below Rowan's ribs on his right hand side, he pressed it, very gently, twice.  He looked at me and said 'he needs to go to'.  I looked at him and I think I must have had the 'deer in the headlights' look.  He quickly, but very directly told me he needed me to sign consent for pretty much everything, he didn't know what he was going to find but I had to agree to let him go in, find what the problem was and do whatever it took to fix it.  I just nodded like a nodding dog.....his registrar came in with the form I signed it.  I put my trust in them completely.  Rowan was in theatre by about 0010.  It all happened so quickly.  It's the first time I have felt so completely nervous lifting him off of his bed, onto the trolley, and watching while they put him to sleep.  I was so thankful he was going to get some rest, if nothing else.  A break from screaming, a break from the pain, even if it took a general anaesthetic to give him that.  But, as I wandered down the dark, all shut down corridor of the new theatres, on my own while I waited for the nurse to hand everything over, panic set in, and for the first time I started to cry, just a little bit.

Now, I never believed in all the 'supernatural', people 'looking out for you', all that kind of thing.  Never.  But, as I stood in that corridor, I heard a voice.  Someone I knew, a friend of mine and Rowan's, who we'd spent many months in hospital with when Rowan was younger, who brightened our day every day those days, who shared in his first birthday with us, in hospital, had passed away earlier that year.  She was 18.  I heard her, and she told me 'it will be ok, he will be ok, I am looking after him'.  I got goosebumps.  I just stood there for a few minutes, the corridor was completely empty and I knew exactly who it was.  I suddenly stopped crying, and felt a weight lifted off my chest.  I whispered 'thanks Charlie'.  I just knew then that he was going to be ok.

The nurse came out from handing over, and we headed back to the ward.  She made me coffee and toast (I hadn't eaten for over 12 hours, or drank anything).  I pulled out my bed to lay on.  I started to read a book but I just couldn't concentrate.  I ended up falling asleep for an hour or so.  I then woke up to cold coffee and cold toast.  I just couldn't stomach it.  At about 4am the nurse came to get me to say he was done.  Off we went to collect Rowan.  I was anxious, I didn't know what they'd found, I didn't know what they'd done,I didn't know if they'd been able to fix whatever it was, but I just wanted to hug my baby tight.  

As we arrived in theatre, I was more than a little bit shocked.  You see, in the middle of the night there is no 'recovery' team, so the surgeons and doctors and everyone literally do their job, and ring the nurse.  He was not ready to be collected, and he was certainly not ready for me to see him.  But I did.  He was blue, and he was on the bed shaking, he looked like he was having a seizure.  I felt sick.  I couldn't take my eyes off him.  The nurse started asking questions and there were no real answers, the surgeon came over and started to tell me what he had found and what he'd done.  All of a sudden I went dizzy, I asked if I could sit down, but before I had finished my sentence I had passed out.  I came round, on the floor, with a load of monitoring equipment on me, my blood pressure had plummeted, my blood sugar was way too low.  They gave me a chocolate bar, and put blankets on me and just waited.  I was fine.  I hadn't eaten, or drunk, and I think seeing Rowan like that just topped it for me.  The doctors put me on a trolley and wheeled me back to Rowan's room, with the instruction to EAT AND DRINK NOW.  So the other nurse on the ward went and found me whatever she could to eat and drink.  About 20 minutes later Rowan and I were reunited in his cubicle.

Rowan was hooked up to double dose ketamine, and morphine on a nurse controlled pump, he had background running, and could have pushes (boluses) as well.  He was on IV fluids only, with antibiotics and all sorts of IV medications.  They had managed to look through keyhole surgery.  He had a new gastrostomy (tube into his tummy) in, only it wasn't technically a gastrostomy tube, but it was all they could find in theatre.  I was told he would not be able to be fed either oral food, or milk feed into his jej (the tube in his small bowel) for 10 days.  They explained that they had found his stomach had been disconnected from his abdomen wall.  This meant that his gastrostomy wasn't actually in his stomach, but in the peritoneal space. (the no mans land between all your organs).  So when we gave him ibuprofen earlier in the day it had gone in this space, and caused a really bad case of peritonitis that would need complete rest.  They had also stitched his stomach back to his abdomen wall.  I was told that he had been a very lucky boy, and how he was not currently in intensive care, they had no idea.  But I knew.  I got another wave of goosebumps, and I knew it was Charlie.  She had looked after him.

The picture from the surgeon, his gastromstomy button (the very circular thing at the top)
 and then his stomach, the pale pink thing underneath.  The gastrostomy 
is meant to be INSIDE this.  (ignore the scalpel!)

I finally fell asleep about 6am.  I was woken at 830am by the ward sister and the head of nursing, who wanted to go through my version of events.  At this point I hadn't really processed anything.  But for them, the investigation had begun into finding out what had happened.  It turns out that there had been a lot of clinical errors in that 24 hours I found out much later when the report came in.  But it was all dealt with, and will be dealt with.

For Rowan though, it turned a 3 night stay into a 32 night stay, as we had problem after problem.  His heart rate was consistently too low, so that needed checking out.  He developed an allergic reaction to some of the antibiotics they had put him on to combat the peritonitis.  He kept spiking a temperature.  He developed 'collections' of fluids in his stomach, that took a very long time to resolve, and very nearly required draining.  He had a reaction to the ketamine, so ended up on morphine only.  He remained in pain for a very very long time.  He lost a lot of weight.  His appetite didn't return.  They tried to feed him a few times after the 10 days was up, and it increased the pain to an unbearable point so they gave up.  

Jo and Steve came to visit and really cheered me and Mummy up, 
and despite some incredible pain, pulled funny faces with Jo :o)

After 32 days I took Rowan home.  24 hour a day TPN.  No oral food except lollies.  No enteral feed, believing he just needed a few more weeks gut rest, this would all be temporary.  Extra pain relief including IV paracetamol, Buscopan, extra antihistamines, extra anti sickness medications.  They left him on a small amount of TPN to maintain his blood sugars, and believing at some point he would get hungry enough to start eating again, and he'd start asking for food.

A year on, Rowan never has regained his appetite, not really.  He has had a couple of admissions where they have tried to feed him again, into his tube, and after 4 hours of a teaspoon an hour of just dioralyte, they had to give up as he was in too much pain.  He's had a few more tests to try and find out why, and they all come back normal.  He lost 4 kg in a small space of time, so they have more than doubled his TPN.  He still experiences tummy pains.  Eating-wise we have progressed a teeny tiny bit.  He still has his lollies and very small amounts of puree, which then drains out of his gastrostomy, into a drainage bag, so he doesn't really get any of it, and this causes more pain.  We are struggling to keep his blood levels at an acceptable level.  He has had a line infection.  He is in the wheelchair more than he is out of it now.  And he is still on TPN 24 hours a day.  He can not be left with anyone but me, and a qualified TPN trained nurse, therefore I went to school with him every day for a term until a nurse was found.  A close friend of mine was trained up to be able to also do Rowan's TPN, so I can leave him with them too.  But it's very restricted, and we are together more than we have ever been before.  Our life changed dramatically that day.  But, it taught me that we really do not know what is around that corner, we went in for a routine test, and came out with our lives completely different.  It is a deterioration in his quality of life, but, neither he nor I are going to let that stop us.  We have just found new ways for him to do the things he wants, and deserves to do.  He is living his life still, just in a slightly different way.  We had our second ever holiday a few weeks ago, and it was fantastic, stay tuned for that blog post!  For now, just remember, humans make mistakes, they are not malicious.  Accidents happen.  You don't know what is around the corner, so appreciate what you have, and live for the here and now.

Rowan bowling, in his wheelchair, soon after we came home                   Rowan meeting a Beefeater at the Tower of London,                                                                                                                                      after the Believe in Magic Christmas Party.

Rowan's bag, that he now takes everywhere with him.

Thursday, 14 August 2014

Goodbye Childhood Hero

It's been a long time.  I have ummed and ahhhed about the whole blog thing for the last 18 months or more. It's all been a bit chaotic, but I feel compelled to pick it up all over again.  I kind of miss it.  And I know a few of you (just a few) have missed me too, I know this because you keep asking me if I am writing again. So here I am.

As we all know, ok maybe you don't ALL know, in fact, maybe none of you know, but anyway, my absolute, 100%, favourite actor died earlier this week.  Robin Williams did not just have one stroke to his brush.  He did a bit of everything, and I can honestly, hand on heart say he did it all very well.  He really did have a go at everything, and gave it his all.  He entertained me as a child with Mrs Doubtfire, Flubber, Toys, Hook, and plenty more, and he still entertained me as I was as adult, with What Dreams May Come, Insomnia, RV, World's Greatest Dad and many more.  And to this day, he entertains my children, he made films that are timeless.  Not to mention the stand up comedy!  No matter what my mood, what my mental health is doing, there is a movie for it all.  Whether it's enteratining the kids so I can pee in peace, or whether it's watching something that requires my undivided attention (once the dog is fed, the kids are in bed, the IVs are done, the housework.......sod the housework)

Robin Williams' death, has reported to have been suicide.  I have avoided most articles written about the event.  I don't want to know.  I don't feel it's my business to know.  I don't have a hunger to read absolutely every article that has been released about his death, or his mental health, or anything else right now.  I don't want to read people's opinions on what he did, or why.  His suicide has affected me in so many ways, that I really didn't expect at all.  He was my only childhood hero.  And that never wavered.  Only a few weeks before he died I watched What Dreams May Come for the millionth time (or so it seems) and it never gets old.  Despite not wanting to know what the various forms of media are reporting with regards to the death of such a legend, it is hard to avoid absolutely everything.  And while I am pleased that there has suddenly become such a huge awareness of depression and suicide, I feel a little disheartened at the general misconceptions around depression and suicide, that don't seem to be challenged.

The few things I have seen recently, that made me sad are as follows

Suicide is a permanent solution to a temporary problem - who knows that that problem is temporary?  Who knows the true reasons a person committed suicide in the first place?  Do you really know what suicidal feels like?  At that given moment, when you feel suicidal, you feel like there is NO other options, and while you, as the 'non suicidal person' may see 1000 options, that doesn't mean, for the suicidal person, those are viable options.  

Suicide is selfish -  This one bugs me quite possibly the most.  Really?  I understand to an extent, that people think those who commit, or attempt suicide, have no forethought about how those closest to them, may feel.  Now I have been there, more times than I can count, and I can tell you know, it's not for selfish reasons.  The thought pattern that I, and many people I know who have felt suicidal, is that the world would be a better place without you.  Your mother/brother/father/sisters/children/friends would be free, happier without dealing with a depressed person, you feel like you drag them down and are a burden on them.  Is that selfish?  And while many people do think about those they love, and this deters them, there are those who truly believe that their friends/relatives will, in time, get over it and move on, especially as their lives will be better without said person.

S/he should have gotten help -  Who says that suicidal people don't ask for help?  Some do, some don't.  Some do ask for help, but that help comes too late, or they live in an area where that help is not available, or it just doesn't help.  Sometimes the person offering the help, makes the situation worse.  And yes, some people don't ask for help (like me), and we fit into the difficult box, no one knows.  And, if no one knows, then no one can help.  But....what if you ask for help, and it doesn't help.   What if you ask for help, and someone laughs at you.  What if you ask for help and that person doesn't take you seriously, and just thinks you are 'doing it for attention'.  What if, that person, wants the complete opposite, to be left alone.  Doesn't tell anyone, because they don't want people looking at them sideways, reading your every movement and breath, worrying about them constantly.  There are often too many what if's, with undesirable consequences.  
Depression, I feel, is a word that is used WAY too often in society now.  'I'm feeling a bit depressed today' you are feeling sad.  I even hate 'this weather is depressing'.....and while 'depression' is 'sadness', to an extent, it is much much more than that.  Feeling suicidal is a symptom of being depressed.  This kind of blase use of the word depression, while many think it's a good thing, I think is wrong.  I believe, and have experienced, that 'being depressed' then becomes a bit of a 'fad'.  Everyone is depressed.  So and so was depressed monday, wednesday, friday, and alternate sundays.  It doesn't work like that.  Not for me, or many people I know who have depression anyway.  It's there, constantly, like a nagging.....naggy thing.  And every day you battle it, no matter what, some days you win, some days you don't, but it never goes away.  Never.  Even, on the best day you have ever had, it casts a shadow, and taints it in some way.

Many people believe a depressed and suicidal person, looks like one of two things.  Either,  they are expected to be pretty much unable to function.  Don't wash.  Don't eat.  Just sleep.  Stay in bed, all day, every day.  Literally do nothing.  And people assume feel sorry for themselves.  Then there is the kind of suicidal person who self harms (by the way, people self harm for MANY reasons, not just because they are suicidal), stands on top of car parks threatening to jump, explains in great detail how they are going to do it, write suicide notes, rings everyone to say goodbye, it's almost predicted.  And while I don't doubt for a second there are people like that, there are also many, many, many people who function at a completely normal level, for a long time, there are people who function under immense pressure and stress, and its when that fades, that's when they actually end their lives.  There are people who go to work, socialize, do their housework, eat properly, don't drink, don't smoke, exercise, all those things we are told to do to improve our mental well being, and yet still, think about suicide, on a daily basis.

I often don't talk about my mental health, as I feel it's a protected, and very personal thing, not to mentioned the fact I live in complete denial 90% of the time, and, as I am sure I have mentioned before, have experienced and continue to experience the most shocking level of discrimination, from the most shocking places.  However, unless you have felt suicidal yourself, you have no idea how that feels.  So don't say you do.  And, even if you have felt like that, even attempted it, and survived, you STILL do not understand how that person feels, as it's unique to them, to me.

I guess the point of this post, was more for my benefit.  I am genuinely upset that Robin Williams ended his life, and that he is gone, and although he leaves a huge legacy behind him, no one will ever forget that he ended his own life.  The world is full of judgments, and none of us will ever understand the reasons he did what he did, or how he felt.  Some of us may have an inkling, but his suicide was not for publicity, or selfishness, or whatever else I have seen.  He was a man, in pain and suffering, who could see no other way.  I wish everyone could analyse a media article, and believe, for a few minutes, that they may be fabricating or embellishing many of the 'facts', and then consider the fact that a man has died, tragically.  Instead of using this as gossip, or in a negative light, look around you, and wonder whether than lady who just walked past you is suicidal, maybe that man over there, with the huge grin on his face while his kids play in the park, has made his suicide plan.  Maybe your friend, who seems a bit down recently, is more down than you thought.  Maybe that friend who ALWAYS refuses to go out with you, is feeling alone and suicidal or depressed and just wants someone to make them a priority, just for once.  Open your eyes to the world people, it's happening all around us.  If Robin William's story does anything for this world, other than leaving an amazing legacy, let it be him that opened your eyes to the reality we live in.