Yesterday Barney got his first ever school report and I had a proud Mummy moment reading it. His principal said "this is a super report Barney - you are clearly a clever and kind boy, and I hope in P2 you feel more confident about letting others see that too! Well done Barney." His teacher wrote lots of nice things about him being hard working and generally a good boy. He seems to be doing his work well an excelling in every area except the social side of things. His teacher said "Barney has made steady progress in all areas this year. He can be a very anxious little boy and requires lots of reassurance and praise from adults within the classroom. He is to be commended for his excellent manners and behaviour." Well done Barney on being such a good boy this year and on doing your best and working your hardest.
Today the schools Occupational Therapist phoned me. She had been spending the day with Barney, watching him in the class setting, and talking to him on his own. They sat and played puzzles together in her room whilst he chatted away about his interests. She has been watching him at school for a few weeks, after his teacher requested that he receive some help. I told her about Barneys panic attacks, and told her about the recent discussions I'd had with him about routines and the unexpected. She seemed happy that I was on the same wave length as her, and that I had talked to Barney and read some books about Aspergers. I got the impression that she is often met by resistance from some parents when told that their child may need extra help.
She has made some 'social stories' out for Barney. He brought one home today which she went through with him. It's basically a laminated A4 page about the 'what will happen when I come back to school after the summer?' It has a photo of Barney at the top, and a photo of his new P2 teacher, with her name. It explains what happens over the summer holidays and what will happen in September. They plan to give him these visual social stories regularly to help him get used to routine at school. The OT said that he gets extremely anxious every time there is an assembly or something unexpected. Just today she saw his face when it was time to go to the assembly hall for the sports day prize giving. She said that he started to cry and the boy sitting opposite him said "don't get upset Barney, I will look after you" and took his arm in the queue. How touching. What a lovely little boy!
She said a lot more but it would take me forever to type it all. I have been impressed with how the school are dealing with this. They seem to be so much more aware of these things now than they did back in my day. Barney has been listed on a 'code of practice'. He is on stage 1, which basically means that the OT will take him out of class once a week and spend time with him making special targets for him to achieve. She will help him with social issues and any worries he has. Eventually at stage 3 outside agencies are called in to assess the child. But that is already underway in Barneys case, and she hopes that the psychologist will see and assess him over the summer so that it is all done before school restarts in September.
School has finished for the older two. Barney doesn't finish until Tuesday. Roll on the summer holidays! And Jimmie's fourteenth birthday, which is on Sunday.
For the first time since Rosie was born, six months ago, I am starting to feel like my old self again. Having a baby certainly takes it out of a woman for more than the nine months that she is pregnant! Rosie moved into her own bedroom this week and seems to be sleeping quite well in there. It is nice to be able to sit in bed with a good book at night again. I haven't done that for so long as we had to keep the room dark for the sleeping littlun.
At the moment I am reading 'The Meaning of things - Applying Philosophy to Life (a great little book that is written in bite sized chapters and isnt hard to understand - so far I have read about death, sorrow, prudence, moralising, tolerance, courage v cowardice and lying - it really is very thought provoking) I am also delving into 'Ten Things Every Child With Autism Wishes You Knew', which is eye opening and enlightening. I've just finished reading 'Can I Tell You About Aspurger Syndrome' which was easily readable in an afternoon. The book could almost be written specifically about Barney. Tarja and Badger are going to have a read of it over the summer holidays. It is a great book for helping siblings, parents, family or friends to understand Aspergers more. I'd recommend it to anyone who's child is affected by Aspergers.
Barney has had a good few days, after the meltdown he had at my sisters house on Saturday. It was Badgers 14th birthday party (I know! Fourteen! How did THAT happen?) so Barney, Rosie and I headed off to my sisters house for some peace and quiet while Marty ran the party here. I knew Barney wouldn't appreciate the noise of the teenagers. So we took a trip to Ikea in Belfast then headed off to my sisters. The second we arrived Barney (being typically outspoken and straight to the point - a trait of Aspergers, so I've read) announced that the house wasn't tidy and smelled bad. He then commenced the cleaning of my sisters kitchen. He washed up the dishes, cleaned the oven, washed the bins and swept the kitchen floor. Barney has always stated the obvious very openly, and people often think he is just rude. No matter how much I explain to him how to be subtle or discrete, he just doesn't get it. I've been reading that this is a very common sign of Aspergers.
Anyway, we had a nice meal cooked by my lovely little sister, and we played with her cat. All was well until it was time to go home, late at about 9.30pm. We packed our bags and headed out to the car, all was well. I strapped Rosie into her car seat, my sister strapped Barney into his booster seat. I turned the engine on and opened one of the electric windows. Suddenly Barney had a complete meltdown. Goodness knows what triggered it? Me opening the window without telling him? The noise of the engine? I've no idea, and nor has he. He started screaming that he had to get out, undid his seat belt, opened the door, ran out into the road, ran into my sisters house screaming that he was going to be sick. He ran into her bathroom and stood over the toilet hyperventilating, shaking and begging me not to make him go back outside.
I talked him down and we went back out to the car. I strapped him in again. Got back in myself. Said goodbye again to my sister. And then the same thing happened again. He ran back into the house and told me that we would have to live at this house as he couldn't get in the car to go home. I asked if he would feel better sitting in the front of the car next to me. I told him we could chat all the way home. He liked this idea and so I moved his booster seat to the front. But as soon he tried to get into the car he started panicking again. Poor Rosie was in the car waiting to leave, and was tired and grouchy. This time I held him and stopped him from running into the house. I didn't really know what to do. I wasn't sure what the problem was or how to help him. I had to almost drag him into the car kicking and screaming. I managed to distract him by telling him step by step what was going to happen - "ok Barney, I am going to strap you in, then I am going to walk round to the drivers side and get in, then we are going to wave goodbye, then we are going to drive home, and we can have a lovely chat on the way home together, then we can tell Daddy all about our day, but then it will be late so you will have to get your pyjamas on, then you will go to bed." I'm not sure if I was distracting him or whether knowing what was happening next helped him, but we got the car moving. He was concentrating on taking deep breaths in and out, and rubbing his legs to calm himself down. I was half scared he would try to jump out of the car while it was moving.
We managed to make it home by me talking to him about all the things we had done during the day. When he was settled and seemed happier I brought up the subject of what had just happened and we tried to figure out together what was going on. He didn't seem to know what had triggered this particular panic attack. He kept asking me 'Mummy, what is wrong with me? Why am I like this?" I felt so torn for him. So I started to tell him how everyone was different and that we all have different ways of thinking or coping with things. I said to him that there are some people who think very differently about the world and explained a little to him about Aspergers and Autism. He had this wide eyed expression on his face the whole time, then exclaimed "Oh Mummy, that's just like me, I must be an Aspergers person!" He had a look of total relief on his face. I almost cried.
So I asked him a few questions such as 'what happens at school that makes you panic?', 'what things happen at home that make you feel anxious?' 'what could we do to make you feel better/safer/happier?' He told me that almost every single day at school he has a panic where he has to tell the teacher that he is going to be sick. He said he feels that way if outdoor play time is cancelled due to rain, if they have to go to the library/assembly/PE, if his teacher is off sick and they have a different teacher, if he has to sit in a new seat or do something new. Basically, he feels rotten if there is any change in plan to what he is expecting. I asked him what makes him feel panicky at home. I couldn't think of any reason myself why he would panic at home. He thought for a while and then said he feels bad if its dinner time and no one has warned him that dinner is being cooked, if he doesn't know what is for dinner in advance, if anyone shouts, argues, or slams a door, if Rosie cries, if he doesn't know what time is bed time, and so on. So I asked him how we could make life easier for him. He suggested that every morning we draw a picture of what will be for dinner and put it on the fridge for him, and that we always tell him half an hour in advance of dinner time so that he is prepared. He suggested that we also show him what is in his lunch box in the morning before going to school. (I notice that on the days his school lunch is a surprise, he doesn't eat it). He asked that I make clock pictures to show the times that different things will happen.
He also said that he can't stand it that everyone lies. "People keep lying to me, I just can't stand it when people lie to me". I asked him who lies to him. "You, Daddy, everyone lies and I don't like it". When I probed into what lies we were telling him it became apparent that they weren't actual lies, but that he often doesn't understand our humour, sarcasm, jokes etc. He takes everything we say at face value (which I've read in this book is typically Asperger). If someone says something daft to him like "I have two heads" he will have to ask if we are joking, and he won't let it go until you tell him that it was a joke.
Our little chat was a bit of a lightbulb moment for him. He didn't want it to end, and seemed relieved and at peace. He asked me to write a letter to all the children in his class saying 'Barney is an Asperger person, so please don't scare him any more'.
Talking of school, I went on the school trip to Cheeky Monkeys yesterday. All in all it went pretty well. Barney was partnered with a girl that he really likes and seems to get on well with. His teacher saved a seat for me near him on the bus, just across the isle from him and his friend. So I was able to chat with him on the way there. He played at Cheeky Monkeys with out any problem at all, which was a relief. It wasn't until it was time to go home that there was any problem. The teacher had told the children where to sit on the way there, and had saved a seat for me. Barney obviously envisaged that everyone would sit in the same places on the way home, but the teacher let them all in willy nilly. I could see through the bus window the horror on his face as he tried to save my seat for me so that I could sit where I was last time, across from him. But some other children took that seat and he was very upset. I got onto the bus and found a seat just behind where I had sat before. But he wasn't happy about it. He started to cry and I didn't know what to do as it was a school trip and I couldn't very well start moving everyone around. The teacher was at the other end of the bus. It made me realise how difficult anything unexpected is for him. In the end the lady sitting next to me swapped seats with him so that he could sit next to me, and he was happy again.
Wow, I only intended to write a short blog post, but I've really waffled on. Today was such a lovely sunny day. I took some photos and video (below) of Barney and Rosie playing out in the sunshine. Lets hope we have a few more sunny days over the summer holidays.
Barney has been taking good care of the cress heads that he's been growing. It's amazing how fast cress grows! The little egg family all have a full head of green hair already. Soon they will need a hair cut. Yummy.
Tomorrow Badger is having his 14th birthday party. He has a load of friends from school coming over. Marty is going to supervise and I am going to go somewhere with Rosie and Barney just to keep out of the way. I'm not sure where we are going yet though. I'm pretty sure both Barney and I won't cope with a house full of teenagers, so we are best off out of the way.
There's only one week of school left for the kids before the summer holidays start. I love the summer holidays. No school runs, no uniforms to wash and iron in time, no waking up at the crack of dawn to get ready for school. And lots of time with my precious babies. I can never understand it when I hear parents complaining that they can't wait for their kids to go back to school.
I've ordered some books about Aspergers/high functioning Autism to read from Amazon but they are taking ages to arrive. One called 'When My Worries Get Too Big' has arrived, but it's a book for Barney to read. We haven't tried it yet, but the idea is that it teaches children how to relax and calm down rather than going into panic. We shall see if it works or not. I like the idea behind it, but wonder whether it will make a jot of difference. When Barney gets an idea into his head it's very hard to change his direction.
Here are a couple of photos from today. Rosie at age 6 months, with that lovely chubby baby look. Aren't chubby babies just delicious? And Barney the explorer about to head off on a mission. I've been thinking about getting back into the healthy eating and nutrition that I was interested in before our trip away. I still love sprouting, but really want to get back into it. Since I was too busy being pregnant and recovering from the c section, I didn't get to plant or grow any vegetables this year. It's a shame as I really enjoyed growing our own food. But I've been so busy with the baby and other things that my own interests have taken a bit of a back seat. I've been reading a few healthy blogs to inspire myself lately. I really want to get back into the swing of things - sprouting, wheat grass, raw foods, veganism and home bread making. I'm not a vegan, as most of you know, but I really do like the idea behind it and appreciate that we eat far too much meat and dairy in our diets. Anyway, here are a few blogs I've been reading lately that have inspired me....
It's a quiet moment in the house. Unusual when there are four kids about the place. Rosie is napping, Tarja is watching TV, and Badger & Barney are making a cafe out in the kitchen. Badger has been great with Barney since we talked about autism with him. Today I found him out in the garden teaching Barney how to play football so that he could mingle with the boys at school better. I was so touched.
Yesterday Barney was invited to 'Cheeky Monkeys', an indoor soft play area in Newry, that I didn't even know existed. He was too frightened to go on his own with his friend and Mum, so I said that I'd go too. He was happy enough with that. But I forgot to tell him that we would be going in his friends car. He was all excited about the trip out until he found out about the car. When Marty mentioned at the last minute that we were getting picked up Barney went into utter panic. He was upset, scared, anxious, worried, angry, desperate. It dawned on me that we are going to have to be much more careful about how we plan things, and inform him of every detail. Had he known we were going in a friends car in advance, he would have been fine with it. It's just that it wasn't what he had pictured in his head. The only way to calm him was to drive there in our own car as expected.
I was a nervous wreck at Cheeky Monkeys. Fortunately it was a quiet time of day and there were only four children there. Barney didn't play with his friend from school, even though they had gone together, preferring to explore the place alone. When it got a bit busier at about 5pm he got more worried and it was time to leave. On Monday his class is going on a school trip to Cheeky Monkeys, and I am going with them as a helper (but mostly just to be with Barney really). I'm not sure how he will cope in that sort of environment with that many other children. I'm a bit nervous about it to be honest. At one point on our visit to Cheeky Monkeys, Barney was in the middle of a spider web type climbing thing when about 8 other bigger children turned up and came screaming through the web. He was utterly terrified. I was stuck at one side of the web, unable to get to him or help him, while he screamed for help and curled up into a ball of panic. All credit to him though, when the big kids moved on he carried on climbing through the web and made it to the top (albeit with a nervous wreck of a mother at the bottom!)
At the end of our play at Cheeky Monkeys, Barneys friend asked if they could go back to his house to play. I immediately said 'not this time', as we were all shattered and Marty was cooking dinner for us at home. Barneys response to this was to cry and scream the entire journey home. He said it just wasn't fair. He wasn't so much upset that I'd said no, but that in his mind there was no logical reason for me to say no. Every reason I came up with for not going was met with a counter reason from him. Then he started shouting at me that I just couldn't understand him. I was surprised at this, coming from a five year old. By the time we got home my nerves were shattered from the stress of driving with a screaming, crying child, and a hungry baby. I had to take myself off to bed for twenty minutes peace and quiet whilst Marty talked Barney down. He came and apologised at the end and was very happy and cuddly again.
Having said all that, I'm feeling much better this week. I've had some energy, enthusiasm and been pain free for four days! So I'm delighted. Hopefully I have recovered from the Hepatitis quicker than expected. I'm feeling more positive about things in general, and more able to cope mentally and physically.
Another week over and time is still flying past at the speed of light. Rosie turned six months old this week. I really can't quite believe it. Where did the time go? How can it be possible? And how can it also be possible that by the end of the month I shall be the mother to a 14 year old!?? I was only 14 myself yesterday, wasn't I? Here is a photo of my first baby and my newest baby together.
After my last blog post about Barney I have been in to the school to speak with his teacher. After discussing my concerns with our GP she decided to refer him to a specialist as she feels that he has some kind of high functioning autism. I had always known that Barney was an individual sort of character, but it has become more obvious that when he is under stress he copes in a very different way to his siblings. Anyway, the doctor said I ought to speak to his teacher and see if she had noticed anything. I honestly expected her to tell me that Barney had settled in fine and was doing just peachy. I was quite taken aback when I went in to speak to her and she had four pages of notes prepared on things she had noticed about Barney over the year. I was both relieved that it wasn't in my imagination, and shocked that she had noticed so much. We talked for about 40 minutes and the more we spoke the more I realised that Marty and I naturally compensate for any of Barney's difficulties, because we know him so well. In the school environment it is harder to do so and he struggles more obviously.
The teacher asked me to accompany the class on a trip to the dentist so that I could observe how Barney interacts and copes socially. At home he is an extremely chatty child, as he obviously feels comfortable around his own family. I was quite shocked on the school trip. In almost 3 hours he did not speak to a soul, nor make eye contact. He kept his head down and seemed to be totally in a world of his own. When it came time to choose partners to walk with he just stood until everyone else had chosen, and then got lumbered with whoever was left. He then refused to hold hands with his partner, and instead made the partner hold onto his coat. Any contact with another child was obviously extremely uncomfortable for him. Apart from that he seemed blissfully unaware of any difference, in his own little world.
The teacher brought out lots of points and said that if there is any change in the days routine he needs one on one attention to cope with it. She wants to make up a routine chart and have it laminated to his desk, with details of what happens each day of the week, so that he knows exactly what is happening when. She has put him on a 'concern list' and wants him to attend some sessions with the educational psychologist when he starts P2. She is keen for him to be seen and assessed for autism/aspergers. The more I have read about it, the more it all makes sense to me, and Marty. I have ordered some books to educate myself a bit more about it all. I know that Barney thinks differently to us, I just don't know how to deal with it.
This last week I've read a lot on the internet in various autism forums and sites, and have noticed that Barney has been a lot calmer just by my change in attitude to him. For instance, quite often his way of dealing with things may seem like disobedience or shyness, and Marty or I might try to force an issue with him that really doesn't make sense to him at all. Then he ends up having a panic attack, trying to throw up, hyperventilating and just generally not coping. Yesterday we were at my sisters house and there were two children there that Barney didn't know. He whispered to me "Mummy could you go past those children and get my toys for me because I can't walk past them". Of course my normal reaction was to say to him "of course you can honey, just go get your things" but when I said it his face came over in panic. Usually I would think it was shyness and try to encourage him to face his fears, resulting in what appears as bad behaviour from him, or panic. This time I said to him "OK honey, I will get that for you", and the look of relief on his face was heart wrenching. He was so grateful that I understood and wasn't forcing the issue. Later the new children asked to play with Barney and his toys. He had brought 33 specially chosen and counted little cars to play with. He looked horrified at the prospect of playing with the children and sharing his precious toys, but he said 'OK' and gave it a shot. But Barney has his own rules and finds it extremely distressing to play with children who can't follow or understand his rules. He gave the boy 12 of his cars and said "you can play with those ones". That was his rule, "you have them and I will have these". And he could cope with that. But the boy kept taking cars out of Barneys pile, and Barney was getting noticeably stressed about it all. Once again I tried to understand it from his point of view. In the past I would have ignorantly forced him to share his cars with the boy, thinking that I was teaching him about sharing and how not to be selfish. Barney was getting so distressed that he was desperately gathering up all his cars and trying to sit on them, in a big pile in the middle of the room, rather than deal with the horror of playing! I asked the other boy if he could play with the 12 cars he'd been given as that would really help Barney relax. The boy agreed and little Barney once again had a look of heart breaking relief on his face. I felt a bit ashamed that I've been forcing him to do things that he just can't handle all these years, without knowing. Barney then relaxed and they all played fine. Eventually he went outside and left the cars with the little boy.
Part of me wished I could explain to the little boys mother that Barney is possibly on the autistic spectrum and thats why he was having a hard time playing. Anyone who doesn't understand that would just see a mother pandering to her child and letting him behave like a spoiled brat, but its not like that at all.
I've noticed since explaining to Badger and Tarja that Barney might have some difficulties, that they have both been a lot more patient and understanding with him. We have had some quite long discussions about what it means to be autistic and why Barney thinks differently to them. Badger would always argue with Barney and frustrate him, work him up into a frenzy. But this week he has been much calmer with him, understanding that he is not just being a difficult child, or a spoiled brat. They both seem to have a real tenderness towards him when hes panicking or shouting that they didn't have before.
I could write for hours about the ways Barney is different to us, and why we sought advise from the doctor. My brain is fried thinking about it all. A lot of people who don't know Barney as well as we do seem to think I'm jumping to conclusions or making a fuss over nothing. But I know my child better than anyone else, and I damn well know what I'm talking about. Off the top of my head, here are a few of the issues (for want of a better word) that he has had lately....
Obsession with time and watching the clock; lack of patience and unable to wait for things; unable to wait his turn; unable to wait to speak when he wants to say something; panic at change of routine; high pitched voice; takes a bowl to bed; lack of eye contact with other children or unknown adults; plays by own rules and can not handle imaginative free play with others; lines up cars in sequences; extremely uncomfortable with body contact with untrusted people; issues with eating (only likes raw cold food, doesn't allow food to touch on a plate); anger and panic if dinner is prepared without him knowing in advance what it is; extreme panic at any change in routine; takes everything that is said literally and will have to clarify whether someone is joking or being sarcastic; gets caught up in what people literally say and can't move on from it; did not walk until age 2; desperate for close friendships but unable to handle other children; prefers to play alone at school than get to know people; sits hunched over his desk and walks hunched at school, sensitivity to sound (panics at noises such as baby crying, cymbals at school, loud music - teacher said he often sits with fingers in his ears), can not understand other peoples point of view no matter how hard you explain it to him; terrified of things like the washing blowing away or the car running out of petrol. I could keep adding to this list for days I think.
Anyway, my point is that I love Barney. He is the most individual, unique, fascinating character that I know. And I don't want to change him. I just want to understand how he feels so that I can make sure I don't do anything, through ignorance, that sends him into panic or makes him feel misunderstood. I can't wait to read the books I've ordered and find ways to really help him grow and learn in his own way. He is a little work of art, and brings joy and sunshine to our lives every day. Everyone who meets him falls in love with him. He's just so lovable!
My boy Barney lost his first tooth this week. At school! It had been wobbly for some time. He was fortunate enough to receive £1.50 from the tooth fairy, which he was delighted with. He insisted that he didn't sleep a wink all night, watching out for the fairy, but he didn't see her. Bless. Here is a photo of his new grin. It's been a Barney filled week. He's been needing a lot of attention, and Marty and I have spent a lot of time talking about him. I talked to the doctor about him this week and am going to see his teacher tomorrow. Barney has always been a big character, full of personality and energy. He is a little star and I wouldn't change him for the world. But the time has come to see if we can learn ways to better help him deal with everyday life. He's a complex little character, and needs an awful lot of one on one attention. The doctor wants me to take him to a child centre and have him assessed for Aspergers or other similar things. I think it would be good to find out why he thinks so differently to everyone else and why he struggles with some everyday situations.
This week Barney and I made some cress egg heads. Or should that be egg cress heads? He decorated some empty egg shells and we put some cotton wool and cress seeds into them. He can't wait to see them with their green hair. Here are some 'before' photos. We will post a photo of them when they are grown too.
This evening I spent the early evening playing with Barney. He loves to play this cafe game under the duvet on my big bed. We go under the duvet and suddenly he is the cafe owner and I order make believe food for him. Barney finds it hard to play as he expects people to follow his rules and do as they are told. Playing with someone who doesn't understand this generally results in tears and a lot of frustration on his part. But today when we played cafes I tried to change things a little. Instead of ordering normal food I pretended to be a monster looking for a monster cafe and tried to order some very strange concoctions such as brain moose, bug salad, worm bolognaise. At first he was a bit taken aback and worried about this change in play. But after a few attempts he started to really enjoy himself and we both had such a laugh together. The funniest moment was when he asked if I'd like to order some 'poo pipes' and then collapsed on the bed in a fit of laughter. It was such fun.
Yes, it's a woe is me blog post. But, I have good reason to wallow for a while... As most of you know I've been feeling like I've been hit by a truck for quite some time. My whole body has been aching and some days I've barely been able to get out of bed. I went to see the osteopath because of the intense pain in my right shoulder area, and have been having headaches, night sweats, fevers, stomach aches. Well, just about everything has ached at some point!
Recently dear little Barney caught Slap Cheek (or Parvovirus B19 to anyone in the know!) He had it quite severely. It's one of those childhood illnesses like chicken pox. Once you've had it as a child you are normally immune. Well, obviously I didn't have it as a child, because I caught the adult version of it. Which, as with chicken pox, is usually a lot harder on an adults body than a child's. I was really ill for a few days, with a temperature that we couldn't get below 39C with paracetamol. Marty was covering me with wet flannels, which was awful! Every bone and joint in my body hurt. I was a total mess.
After a few days of this I started getting very intense chest pains. This went on for about 24 hours before Marty phoned the doctors and they told me to go in for an ECG. The ECG was fine and the doctor said it was probably just pain from the inflammation in my chest wall due to the slap cheek virus.
By the next day I was still having constant chest pains. Pains so strong that I was crying out. You know, the sort of pain you can't ignore. So we headed, as advised, up to the hospital to get checked out (but not before stopping at Barney's school to see his debut performance in the school assembly!)
The doctor I was given was almost the twin of JD from Scrubs! But with a Northern Ireland accent. Lol. He was lovely, and so sympathetic. There's nothing worse than a doctor that doesn't care. He explained that parvovirus b19 can have some rare but nasty complications in adults, but that it was probably nothing more than heartburn. Ha, well I knew it wasn't heart burn, but I thought maybe there was a problem with my esophagus or something. Anyway, they took some bloods, and an x-ray and then tested my blood gas levels. Well, if anyone ever offers to test your blood oxygen levels then just say hell no! (Unless you're like dying or something!) He warned me that it would hurt, but daaaaannnnngg. I dunno what he was doing with that needle, and nothing other than air seemed to come out, but it went in and out of the same hole in my wrist about 5 or 6 times, each time in a different direction. I was a brave girl and I didn't even get a sticker.
Well, after all that poking and x-raying I just had to sit and wait for the results. During this wait my pain killers wore off and I started getting the chest pains badly again, and my temp started going up. I just wanted to be at home in bed really, because I was pretty sure they would tell me all the tests were clear and I just needed to fart, or something.
I saw the doctor check 4 other peoples chest x-rays. To me (totally untrained in the medical department) all the other peoples chest x-rays looked nice and healthy! I have no idea if they were or not. Then he took my chest x-ray and put it up. He examined it for a few minutes and I couldn't help taking a good look at it myself for a bit of hypochondrial self diagnosis. I was pretty sure my x-ray looked like I had something awful. Not only was there a massive liver in my shot, but a big round lumpy thing where the pain was radiating from in my chest. The doctor came over slowly and I could feel my palms getting sweaty as I waited for the terrible news. "Your chest x-ray looks fine" he said, "and your blood gas is normal too, so we are just waiting for your blood results." OK, maybe I really do just need to fart. How embarrassing.
My blood tests got lost in hematology. It took several irate phone calls from the ward sister to convince hematology that my bloods had even been taken, and then they claimed a computer malfunction. So they apologised that I had to wait so long. And I kept on waiting. The longer I waited the worse the pain was getting. I was doubled over in pain, but trying not to look like I was in pain, as I didn't want all the nurses laughing when they found out that I only needed to fart and had made a big fuss over nothing!
Eventually the blood results came back and I was summoned to a room with the JD lookalike. "Would you mind if I took a look at your stomach?" he asked. "Of course you can" I replied, thinking that obviously the bloods were fine and he's now looking at my stomach to see if I do indeed need to fart. He was poking and prodding and I thought that at any time he might hit the pocket of pain-killing wind and force it out of me right there and then in one big embarrassing explosion! Thankfully that didn't happen. He started prodding around under my ribs on the right hand side and ooooohhhh lord did that hurt! "That hurts doesn't it?" I thought Id kept a pretty calm expression on my face, but he was no fool. "Does that hurt too?" Yes. "And that?" Yes. "And there?" Yes.
"OK, well the pain confirms the blood test results. Now I don't want you to panic when I tell you this, and let me explain why in a moment, but you've got hepatitis in your liver." Hepatitis? Are you kidding? You mean, I don't just need to fart?? I didn't know whether to be upset or relieved. On the one hand I didn't want to be ill, but on the hand I didn't want to leave none the wiser as is often the case. Anyway he went on to explain that a very rare complication of slap cheek / parvovirus B19 is hepatitis. It's extremely unusual, but some people can develop either hepatitis, septicemia, meningitis or pericarditis (inflammation of the heart) from it. Well I must admit to being glad that I didn't get the meningitis. The doctor had suspected pericarditis from my symptoms, which sounds blooming scary so I'm glad it's not that. So, I have acute viral hepatitis, which should last less than 6 months. Most people don't know anything about viral hepatitis (me being one of them). It's not contracted in the same way as say hep b or hep c, and it's not contagious, so I can't give it to anyone else. But it's also not treatable, so I just have to play the waiting game and let my body beat it. He said that if I'm lucky I will recover in 10 days, but on average it would take a month, and could take up to 6 months. I have to get tested every 2 weeks.
I'm not entirely sure that I haven't had it for quite some time though. Liver pain transfers to the right shoulder area, and I've had right shoulder pain for a good month now. Although I suppose the parvovirus was probably in my system already.
Well, it's going to be tough for poor old Marty. I can get an hour where I feel absolutely fine, but I can suddenly feel as sick as a dog. Which is not surprising as I'm probably completely toxic! The doctor said I will probably turn yellow. Nice! Can't wait for that. So right now I'm spending the majority of time in bed. The pain killers don't cover the pain for long enough. I have to take them every 4 hours and they only work for 3 hours. So I have 3 hours of tiredness, then an hour of excruciating agony, then back to the tiredness. It kind of sucks really. Not easy when you have four children to take care of. I've never been so glad that Marty is not working before!
Just as things start to look up in life, something always comes along to kick you back down! Yes, I'm feeling sorry for myself today. After looking after a sick Barney and a whingy Rosie all week I have now caught the kids illness 'slap cheek' or 'fifth disease' for you Americans. And boy am I miserable. Interspersed with OK moments (like now) I am enjoying tremendous bone and joint pain. It's really very painful. With that I'm lucky enough to go from high temps of 39C plus body sweats, followed by feeling cold and having the shivers. Nothing would lower my temperature last night so Marty resorted to covering me with wet flannels, an experience I never want to repeat. Cold wet flannels on irritated high temp skin is as painful as fire! After all my complaining he decided that misting me with a spray of water might be better. The mist falling on my body felt like a million needles shooting down and stabbing me. I was not impressed! A couple of times a day I feel better and think its all over, but then it starts all over again. Gahhh. Every single joint apart from my hands and fingers feels inflamed and sore. I'm feeling pretty damn sorry for myself. Thank goodness Marty is here to look after the kids. I don't know what I'd do without him!
So I am laid up in bed, too painful to walk, with lots and lots and lots of thinking time. Bleh. I was supposed to be going to the doctors today for a follow up appointment to get my medication altered etc, but I was too ill to go! Sob, sniff, whinge.... No, I'm not a good patient.