My black dog

I don’t know how much you have figured out from previous posts but I suffer from depression. I have had it since the girl was born nearly 10 years ago.

Most days I have a handle on it but sometimes it all just gets too much. I just want to hide from the world for a while or forever!

At my worst I was hospitalised on two occasions for 4 weeks each time. It saved my life and my baby’s life. I won’t go into it now but I was in a pretty bad place.

I am not there now but I just want to stop for a bit. The boy threw an almighty tantrum this morning about going to school. He does this periodically and recently we have been able to overcome these tantrums by saying that he will be going to school so either get dressed now or he will be getting dressed in the principals office after walking into school in his pyjamas.

It didn’t work this morning and neither the man or I could get him out of the door. We gave in and said that if he was sick then he would have to stay in bed the whole day and do nothing. He screamed and cried at that for a while but then calmed down.

After asking to watch the tv and being told no, and getting the same answer when he asked to play with his DS, or play with lego, or read a book, he gave up and asked where his school clothes were and could Dad please drive him to school. I even got a hug and a kiss goodbye. He left and I promptly burst into tears. It is all getting too hard…

I do some work but I have no motivation to do that any more. I have an idea for a mini-business/hobby but I have no energy to get started with that either. I feel safe at home and don’t like leaving home sometimes and I enjoy being by myself when everyone is either at work or at school. I relish the silence….

My head is a lovely place to be at the moment.

 

 

 

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Why bother making plans?

Months ago I made an appointment for the boy to go to his regular renal clinic to get his kidneys checked  today. As I also have the five year old twins I look after on a Friday to contend with, I had planned everything down to the nth degree. Including the pick-up of the girl and the drop off of the twins on the way to basketball for the boy. Since the hospital isn’t exactly close, I knew we would be cutting it fine to make it to basketball on time.

Everything was planned and everyone knew where they had to be at a given time. All good so far! I had been priming the boy all week for his appointment, he needs to know in advance what is happening and when as he hates change. I have to remind him and reassure him about what will be happening, and that he can take his DS with him to zone out if he needs to.

I arrive home yesterday afternoon to find a letter from the hospital to say that they have made an appointment for the boy. In 7 weeks!

Several swear words later I rang the organised hospital to find out what was going on.

‘Oh’, they said. ‘We cancelled the renal clinic’. ‘Of course you did!’ I replied.

They were sure that they had tried to call me days ago. Since the really nice and helpful lady on the phone then recited my two phone numbers back to me to make sure they were correct, and I had had no messages or missed calls from the hospital I was sure they had not tried too hard to contact me.

‘Sorry….’ said the nice lady.

‘Just turn up in 7 weeks instead’ (now on a day and time that is not convenient but if you want to change that you will have to wait even longer)

‘It’s ok, my children are very adaptable to change so it won’t be a problem!’, I said under my breath.

Then basketball was called off, just as I was about to take the kids there. Apparently the other team had to forfeit or something. Don’t they know that the boy needs his game and can’t cope without his weekly run!! How dare they do that to me! Grr….

As the boy got upset I gave up with the plan making, came home and declared it wine o’clock! I’m sure it was time somewhere in the world!

Is the week over yet?

Finding it very hard to do anything this evening, it has been a difficult week on many fronts.

I was sick to start with, had some sort of cold and chest infection so really couldn’t be bothered doing anything as I was feeling very under the weather. Slept for a few days whilst the kids were at school. This meant I couldn’t go to work because I couldn’t breath.

Also, school has been a battle ground for the boy. He doesn’t want to go, so getting him out the door was a nightmare at the start of the week. He started in Year 2 this year and he thought that there was going to be a big jump in the work and what was required so he was a bit worried to say the least. So far those fears aren’t warranted, so his confidence is coming back slowly.

With school comes homework! Much more of it for both kids than last year, so I am making the kids do some homework before they can relax for the evening. The boy has been really good at this, only because then he has one up on his sister really (he can play and relax and she can’t, haha!! ). The problem with homework and the girl is that she is so bloody tired by the afternoon or she has a headache from all the noise at school that it is hard to get anything out of her. Something she is really good, but other times it is not good. Last night ended with me throwing her homework book across the room because I was so fed up with it.

Unfortunately the girl is a perfectionist when it comes to work, so if it isn’t right then she has a meltdown. Or she tries to start too many parts of it and nothing gets finished. She had to write a story using all of her spelling words this week. Try using words like sixteen, bias, worst, street, nineteen, between, ache, and a few others to write a story and make it make sense. Well she couldn’t and it drove her crazy! (If you want to hear about the queen who hurt her leg and got it amputated then let me know).

She was also up very early one morning which makes a horrible girl at the end of the day. She doesn’t sleep well and has melatonin at night to help her get to sleep, but she has always been a poor sleeper and sometimes she is awake from 3am or 4am in the morning (makes for a grumpy ma and pa as well!!!) So Tuesday morning she was awake from 4.30am and apparently needed Dad to rub her back to get her back to sleep. Except that didn’t work, so she was awake and so was Dad. He was a bit grumpy at 7am when it was actually time to get up!!!

Then the girl wouldn’t drink her ritalin from the cup of juice she was given, so the cup had to be changed 3 times before we found the right one. We wouldn’t bother going through all of this everyday but the ritalin makes such a difference to her day that we just have to do it. She then decided that she wasn’t going to drink anything at all the next day – so that left me wondering what to put her medication in the next day. It does my head in, having to stay one step ahead of them both all the time. The last two days she has had it in a centimetre of coke because she is guaranteed to drink it.

The boy had a worried for a couple of days about his kidneys. As I have mentioned in an earlier post he has Nephrotic Syndrome and is in remission with it. He has been off medication for about 6 months and all has been good. This week he started having protein in his urine which is picked up with a urine test. We were thinking he would be heading back to hospital and back on the steriods if it didn’t get better, but todays test was much better. Nothing like having a sick child to make your heart race! (although the boy was disappointed because if he went to hospital then he would get out of school)

Tonight we have had a very tired girl who finally did all her homework after coming home with a headache and sore legs from sport. She took half an hour to get in the bath. Apparently we were rushing her to get in! I don’t recall that part, and she was pretty lucky not to end up fully dressed in a cold bath!!!  Then after getting out she couldn’t find her underwear. I tried to tell her they were in the same draw that they have been for the last 9 years but she didn’t comprehend that – so I found them and dressed her like I usually do after having this discussion.

She has gone to sleep without having her teeth cleaned tonight. It wasn’t worth the effort!

After holding the toothbrush for half an hour saying that she would brush her teeth in a minute and to don’t rush her, I tried to do it for her. Not good when I am grumpy and tired and am over the whole rigmaroll of bedtime and of how bloody long it takes to settle her ever bloody night! So now she is crying and I am cross and she can’t calm herself down. I left the room with her still holding the toothbrush, saying that neither her dad or I will be back until she has brushed her teeth. Bad move, now she is even worse and I feel like a shitty mum who doesn’t care. I ventured back after a few minutes saying to just leave the cleaning for tonight, it doesn’t matter and to just go to sleep. She gives me a cuddle whilst she stops herself crying and rolls over on her side while I rub her back. She was asleep in 3 minutes.

Poor kid – I am so hard on her.

Makes me sad.

13 Months ago

We nearly lost our boy.

It was a Saturday in December 2009. The boy undressed to go in the bath and started dancing around the loungeroom. Like you do when you’re naked.

I noticed that his doodoo(as we call his nether regions 😉 ) was a bit of a funny shape. Like it had a big bubble in in. Had a look after the bath and it looked worse. Then I noticed that his knees were gone. Not gone altogether, but his legs were so swollen that his kneescaps had all but disappeared. Very scary.

Took him to the nearest hospital as we figured that whatever it was, it wasn’t good. Took a bag full of clothes and books and toys as we know from previous visits to hospitals that you are never in for a short wait.

Doctors had a quick look at him and asked him to give a urine sample. The boy, then aged 6, was a good aim thank god. The urine came back full of protein. Prognosis – Nephrotic Syndrome. Basically his kidneys had begun filtering out all of his protein from his body, causing his cells to implode and his body to become full of fluid. His abdomen, legs and  feet  were full of fluid. Luckily his lungs had not begun filling up yet. It was now the middle of the night, and we were told to get some rest and wait for the paediatrition to come in at 8am. Luckily we were able to go home for a couple of hours to sleep in our own beds.

Back we went at 8am. Blood tests confirmed the diagnosis and showed that he was at a dangerous protein level (albumin). He got an infusion of Albumin and the doctor began looking for a bed in a bigger hospital.

He was transferred to the new hospital and we began to see a lot of specialists. Another transfusion was done, and monitoring of his protein output began. It was looking like he would be in hospital for a couple of weeks. The boy was put on four different kinds of medication. Prednisolone (steriods) to stop his kidneys leaking protein, very high doses of that. Penicillin to stop infection occuring, aspirin to stop blood clots and ranitidine to stop ulcers forming from the high doses of prednisolone. Twice a day. We also had to crush or mix it all up as there was no way he was taking it otherwise. Banana milk was the flavour of the day, followed by a milk chaser. I am very good at hiding medications due to having to hide everything my daughter has to take. She has Juvenile Arthritis – but that’s a different story.

My husband would do the night shift in hospital on the hard creaky bed in the noisy ward, and I would do the day shift after dropping the girl at school. The boy missed the last week of school for the year, probably the most fun one of the year. He missed the class party and class concert, and seeing his school buddy. He missed going to his classroom for the following year and meeting his new teacher and classmates. He loved the art/play room at the hospital though, and spent hours in there producing pages and pages of artwork as now he was high on steroids and was completely hyper. He couldn’t sit still for more than a minute.

As I sat in the hospital ward for hours on end I wondered why everyone was so caught up in Christmas which was the following week, and why were they so stressed about buying the perfect present when it all didn’t matter. Nothing seemed as important as my child’s health. It certainly put a different perspective on it all.

We were like zombies and trying to cope with lack of sleep. Occasionally when I was alone I would break down into tears, it still hadn’t really hit me how sick he was.

The boy was so brave. He is naturally a very shy person and won’t speak if some one speaks to him. He spent the week in hospital without once talking infront of the doctors. I remember going to a check-up with him a couple of months after the hospital stay and the doctor nearly fell over when she heard the boy speak.

He was discharged after a week because he was so good at taking his medicine and doing his twice daily urine tests. We had to go back weekly for check-ups, with strict orders to come back if he suddenly put on more weight. His diet consisted of about 500 grams of tuna daily – the steroids ramped up his appetite enormously, and he soon developed the typical rounded face of someone on a lot of steroids (moon face they call it)

Yesterday we went back to the hospital for a check-up. He has been off steroids for 7 months, and protein in his urine has gone. He has grown and slimmed down and looks the picture of health. Far from the little boy who gave us such a scare 13 months ago.