I am finding life hard

As the title says I am finding life more than normally hard at the moment. There are lots of reasons for this...most of them fairly minor, the main reason is DD and how ill she is and how needy she is getting.

The minor moans...just for completeness and in no particular order are:-

• the Rumanians or whatever they are who are swarming all over the area. God they are loud, sweary and there are soo many of them. Dozens of children in most houses...that is not an exaggeration unfortunately and the children have no supervision or boundaries. They are out on the streets at all hours, and in all weathers, shouting and screaming, spitting, weeing on the street and generally being aggressive and unpleasant. Non of the other local children play out at all any more and who can blame them!
• DS2 is so incredibly happy and excited about his college course and is loving every minute. For the first time in his life he has friends who are on his level and that he understands and who understand him. All that is beyond good but it is making him hyper and totally OBSCESSED with having a girlfriend and getting married! Its all a bit wearing and he can be hard work to bring back down to earth and get him back in touch with reality. But I am so very pleased he is having such an amazing time at college.
• DP is being his usual knobby self but has added weird 'jazz style' clapping and noises to his repertoire, really not appealing or pleasant. He is still not talking to DD at all which is pathetic. Other than that he is mostly keeping out of my way, though his habit of telling me what he is watching on TV or YouTube is irritating, fortunately I have years of practise in ignoring him and his seriously attention seeking behaviour.

But as I say these...and other annoyances are minor in comparison to how ill DD is getting and how much support she is needing. I do find her habit of whinging very difficult to deal with. She's not doing it on purpose as such but she does need lots of attention and in many ways she is behaving like a baby and they cry to signal they need something. It means I get very little time for myself...hence not getting chance to write anything for a while. I, mostly, keep my temper, she is suffering and its hard for her. Though there are moments when I think how nice it would be...for an hour or so, to be able to sit in a chair and have people dance attention on me and get me whatever I asked for. OK I'd get bored very fast and DD doesn't have the luxury of deciding she's had enough added to which she is frequently in lots of pain and generally feels crap.

• just thought of another minor annoyance, J has spent through a large cash gift from her mum...think 1,000's...in a very short space of time and is desperately short of cash again. Its all gone to fund her drug addict boyfriend which is the bit that annoys me. Anyway she sold her saxophone to DP for not a cheap price...it was the high end of what was available on ebay. I don't resent paying for the instrument but I do resent the fact that the money went on drugs. I am a total puritan but I find it all seriously disturbing. DP has her flute and I have checked the price so if that get's bought I know what a sensible price is and won't let DP overpay again.

Anyway that's some of the reasons life is less than easy at present....another reason is my weight loss is flat lining...the only way to get it back on track is cut out even more food but I already eat very little so that will be hard and its getting dark and all my body wants to do is eat calorie rich food to help me hibernate!

My son is awesome

All my children are utterly brilliant and perfect in their own ways obviously but DS1 is soo handy doing loads of odd jobs for me. He spent the whole summer holidays sorting stuff, some big like sanding down the kitchen table so I could revarnish it...and then resanding it as DP and DS2 wrecked the initial varnish in less than a day, to little stuff like moving furniture for me.

He is so solid and just does stuff...okay sometimes he has a melt down if he thinks I've been pushing him too hard and not giving him enough time on his own. But mostly he is placid and calm which is just brilliant in a house where DP is a low level narc who is constantly attention seeking like a pathetic toddler, DS2 who nutty, hyper and has the attention span of a mayfly on speed and DD who is struggling to cope with how her illness is messing with her emotions. I really miss DS1 when he goes back to Uni...not just because he is so useful but mostly because he is so calm and quietly supportive just by being around.

I have been writing this post for weeks but have been struggling to get any time as DD has been seriously unwell and needing high levels of support...physical and emotional. Also DS2 seems to pop up and start being nosy anytime I get anywhere near the computer.

DS1 has been back in London for 2 weeks now, his Uni only started today but he needed to get away fro his sanity, he was finding DP and DS2 increasingly hard work and just needed some space to himself. Its a real shame he left when he did as I really needed him to do a major job just after he'd gone. I got DP to take an old...and disconnected...gas fire to the skip but moron that he is he also took the metal plate that blocks the chimney as well! I did text him to say do NOT throw it but of course he didn't read the text and then flopped instead of going straight back to the skip to retrieve the metal plate. Its hard to credit just how utterly stupid the man is...weirdly he still thinks he is the cleverest person he has ever met...god he is sooo deluded. Anyway I now need DS1 to make me a new whatever to block off the chimney so the kitchen doesn't get covered in rain and soot!

The summer holidays are drawing to an end

I have to admit I have always enjoyed the summer holidays, its good not to have to race out of bed every day to sort packed lunches and sort children off to school and the spend the day keeping an eye on the clock. Summer holidays give time and space to actually enjoy time with my children...or at least that's what it used to be like.

Once DS2 arrived summer holidays became harder as he struggles to cope with any breaks in his routine and while he used to find school readily hard he can be hard to keep occupied at home. Still we used to get out for days to do stuff and holidays were still lots of fun. This year is not proving to be quite as much fun as I'd hoped. For a start its been going on for ages...DS2 finished school in early June and DS1 came home from Uni before the end of June. DS2 is madly keen to start College, once he'd had his taster days he fell totally in love with the place...'how had we KNOWN he would like the College so much'...so he is getting to be a bit bored at still being off. DS1 is kind of coping with being home from Uni but has really grown away from life here and will be happier once he gets back to his real life, luckily he still has friends here but its not the same and he finds coping with DD, DS2 and DP really hard.

The main problem this summer though has been DD's health. She has deteriorated at a steady pace ever since she became ill but this summer her decline has been precipitous and its getting scary for her...and the rest of us. She is having to give up football...a real shame as she felt doing powerchair football made her illness worth it, she is struggling to maintain her blog even once a week, she was doing it every day not that long since and she is almost totally housebound. Having DS2 at home all the time is hard for her as he is so loud and does suck energy out of everyone. DS1 also makes life hard for DD as he won't DO all the stuff he thinks he should...after all he has the energy and is going to actually get to leave. (As a big sister she has always had a tendency to micromanage her brothers life).

Not sure what the future holds for DD but its not going to be pleasant or pretty. We are hoping to manage a couple of outings before the end of the holidays but they will be DD's last trips out unless a miracle happens. It also looks as though I will not be able to leave her, even with her brother to look after her as she needs more support than she can take from him. I went to see my parents on Sunday with DP and DS2...totally a duty visit...and DD struggled. Then yesterday I had to leave her for most of the day as DS1 needed taking to Middlesbrough to get his first tattoo....DD coped but only just and I can't justify leaving her.

I still like summer holidays but I don't think I'll be looking forward to them quite as much in the future.

Happy Days

I am having a really good time at the moment....not that everything is great, DD is not good and is in huge amounts of pain. She had her PIP assessment on Thursday which lasted an hour and a half and she was sobbing with pain and exhaustion by the end then on Friday she had an appointment at the new pain unit which was tiring as she had 4 questionnaires to fill in and the place was loud and busy.

Still even with DD being ill we are still having good days. On Wednesday we all went out to Harlow Carr and the flowers were the best I have ever seen. There was a patch of wild flowers that were especially lovely...lots of poppies and corn flowers, very special.

On Saturday my new cooker was delivered and installed. Knowing that it would be a job and a half...mostly because of the vast amounts of expanding foam DP has used around the old cooker, don't ask...I arranged to be in town getting DS1 and 2 haircuts leaving DP to cope. Even before we left I could hear the men removing the old cooker complaining the cooker was hot...DP had used it minutes before it needed to be taken out because 'no one had told him'. Installing the cooker was obviously less than fun job...had DP 'known the foam would cause problems he would have dug the old plug out'...what bit he didn't 'know' only he could explain. He was more than aware the new cooker was being installed because I explained it all to him, but he only 'knows' he is perfect so any problems are someone else's fault obviously. Anyway non of that mattered as I wasn't there and the new cooker is gorgeous...all white and shiny and sooo clean.

On Saturday night I had another amazing experience. I phoned my parents, not because I really wanted to but felt I ought to...the problems of being a dutiful daughter, well a bit dutiful. The last phone call from my mum had been very brief and she'd not phoned since so I'd had a good week of peace and quiet and thought I'd had too much fun so ought to phone. Anyway I got my dad and we chatted for a few minutes about England winning the Ashes and the stuff he's doing in the garden. Nothing major just general chit chat...I asked after mum's health and did the polite stuff. He was then going to pass the phone over to mum so she could speak...this is when my day looked up...she wasn't wanting to speak to me. Presumably I done/not done something which has offended her and so she is punishing me by not speaking to me. I really wish I knew what I'd done so I could so it lots more!

As far as I'm concerned she can refuse to speak to me until she dies, if I never speak to her again I won't loose anything good from my life. Instead I'll loose all her self absorption and her endless negativity and all her snidy comments about what I should be doing.  Long may the punishment last!

Anyway as  I said happy days!

Update: unfortunately I gloated too soon and my mum phoned me a couple of days later to dribble on about who knows (or cares) what. She did ask about DD's scan...she doesn't have any scans booked but mum stalks DD's blog, twitter etc and about a month ago DD mentioned she was finally being referred to a neurologist. Mum has been told how much DD hates her reading her stuff but mum is too self absorbed and ignorant to think anyone could possible object to HER doing exactly what she wants. She really is a less than pleasant person...her loss as it means she doesn't get to see DD or DS1, though not sure how much of a loss she thinks that is. They are not the grandchildren she wants any more so I'm not sure she misses them...other than as actors in her personal drama!
I mentioned to DD about her Gma reading her twitter and she tweeted about how creepy it was to have family stalking her twitter feed! Way to go girl!! Maybe Mum will be pissed off and punish me again. Fingers crossed.

What an exciting week! (sarcasm alert)

Well the week started off okay with me finding out I'd got carers allowance for DS2 when I spotted the money in my account. Always nice to find cash I didn't know I had.

As I now have regular extra money I decided I'd better start sorting all the long list of jobs that need doing but I have no money rather than leaving them in the hopes they'll get sorted by elves. So I got the gas fires serviced and got details of how big a new cooker I could squeeze into the kitchen. Unfortunately I can't get a normal sized cooker I still need a little one, a real shame as there is technically space for a bigger cooker but new safety rules means I can't use all the space.

The other problem is that the gas heater in the kitchen is unsafe because the chimney is leaking and needs relining. Not worth the money so I am now trying to get a quote for a new electric fire...I do not fancy a winter without heating in the kitchen!! At least sorting the heaters in the summer gives me time to get everything working by winter when it will be freezing. Not that's its exactly warm at the moment.

I am also getting a quote for a new shower for the top bathroom. The shower has never worked well, it drains poorly and it only gives a trickle of water. I have been wanting to replace it for years and now seems like a good time to find out how much it will be. I am not sure when I will get the money together, even with extra cash coming in we still have more jobs needing cash than we have money! The list of jobs that need doing include-

• car MOT in the next month and all the work that invariably needs doing
• replace sofa in living room
• sort roof to try and stop water coming in...this is an on going problem and is endlessly annoying.
• replace the cooker
• sort an electric heater in the kitchen
• replace the shower in the top bathroom

I have other jobs that need adding to the list eventually like replacing the hall/stair carpet and replacing the lino in the kitchen. The bath also needs replacing in my bathroom.

Well it won't all be done anytime soon but its good to know I have some cash coming in regularly to help. Makes it possible to start on the list.

Another good thing this week is that I've not heard from my parents. I phoned them over a week ago and its been lovely and quiet ever since. I'm enjoying the rest. My brother was due to go over yesterday and see them and mum was expecting him to stay, not sure if that was part of his plans but fortunately its nothing to do with me either way. I will doubtless hear all about it from mum at some stage.

Update: well I got a phone call from my mum in the evening and my brother did stay over for one night which was good of him. It was a weirdly brief phone call, my mum has been known to dribble on for over an hour as standard on phone calls and this one lasted less than 5 minutes. I think the reason for the brevity was that I told her my news...about the gas fire and the chimney...that's not the purpose of phone calls I am supposed to ask after her health and then listen while she tells me boring twaddle about her life. I prefer the shorter phone calls, though even in the brief time she spoke she still managed to be snidey about how I deal with DS2 and blatantly uninterested in anything to do with my life. What it is to have such a supportive mother.

Update 2: well here I am updating this less than a year after I originally wrote my list of jobs I'd like done and I am overjoyed that every one of the jobs I really wanting sorting has been done! We have also got a stairlift for DD fitted and triple glazing in her bedroom to reduce the noise coming from the street. Its been a busy year and DD I have both been saving like mad but we have worked our way through everything on the list, even with such minor matters as a new washing machine being needed when the last one died and even a new tumble drier when that stopped working properly. We now need to save for DS1's deposit for a shared house in London for his 3rd year of Uni and afterwards. So no worries!! Good job we are used to saving hard!

Our holiday

Well we booked a holiday on a canal boat that was specially adapted for wheelchair users. It looked perfect, a slow moving, gentle holiday with lots of time to do stuff as a family...when I say 'family' I mean me, DD, DS1 and DS2, DP hasn't been included in our holiday plans for years as he can poison anything with his temper and foul moods. We had planned a route that would take us to Stratford on Avon and it all looked idyllic.

We got to the boat yard on Thursday and got everything on board and DS1 got taught how to steer the boat. It all looked fine...the boat wasn't as wheelchair accessible as we'd imagined but still workable. We were recommended not to do the route we planned as it was not easy for beginners and would need more able bodied people than we had...really just DS1 and me. So we set off down the River Severn for Worcester.

The river was lovely, everything we'd hoped for. Lots of nature, warm sunshine and plenty to see on the river. Unfortunately the boat was not easy enough to steer that anyone except DS1 could do it so he stayed at the tiller all day and ended up extremely over tired, sunburnt and dehydrated. He was concentrating so hard he didn't drink or eat enough and couldn't take a break to get suncreamed up. Not that suncream made that much difference...it was very sunny.

But the main problem wasn't DS1 it was DD. She just found it all too much, too much light, too much movement, too much having to concentrate because she felt she had to help cope with manoeuvring the boat as much as she could. She couldn't rest when she needed to and got dangerously over tired. She has been flaring mildly in recent weeks and we were anxious about how she would cope on holiday but wanted to go anyway, well we found out how she coped and it wasn't well.

We moored up in Worcester on Thursday night and I decided we would go back on Friday....DS1 admitted he found steering the boat all the time harder than he'd imagined, DS2 loved the boat but was getting bored as there was little for him to do when he were moving, I found the constant motion disconcerting (I suffer appallingly from motion sickness and even a slow moving boat on a gentle river affected me) but non of these would have mattered if DD was coping. But she wasn't, she was struggling too much and the only option was to bring her home before she got too ill to manage the journey back. To be honest only DS2 was disappointed with the decision and even he could see how desperately poorly DD was...he gave her the teddy he'd brought on holiday to protect him. He is such a sweetie, hard work but sooo worth it.

The holiday was worth it....DD and I were up at 4am on Friday morning watching the dawn over the river...total magic. I saw an otter, she saw kingfishers and we all saw loads of heron. DS2 got to steer the boat for a tiny section which made him feel amazing and he got to sound the horn loads. DS1 got his low opinion of motor boats confirmed by the arrogance of the motor yacht owners, he is definitely a sail man. But even with all of this coming home was the right decision.

Unfortunately it was a hellish journey coming home...6.5 hours for a 3 hour journey, thank God for air con! The traffic round Birmingham was VERY slow moving. Still it was good to be home again and DD was happy to be back in her own room where she could control the light and she was able to rest in  more comfort. She was still dangerously overtired and in huge amounts of pain but found it easier to manage at home.

An interesting note: on the first night I had a text message from my Mum and DP both basically saying 'hope you have a good holiday'. I replied to both saying the weather was good but DD was struggling and we were coming back early. DP replied briefly saying 'what a shame', but no enquiry about DD. My Mum didn't reply at all. I also texted my friend to say what was happening and got texts back expressing normal interest and offering support and the following morning she texted again to check how DD was coping and basically showed she cared. Nothing from DP or Mum. When we got home DP was plainly not expecting us back and was VERY plainly not happy we had got back early to invade 'his' space!

I didn't find out anything I didn't know but it was a very clear example of how little DP and Mum care about DD.

My Mum is ill

My mum has smoked for more than 60 years and, unsurprisingly, suffers from chest problems as a result. She has smoked up to 60 a day at some stages and still smokes plenty, even though she is not supposed to be smoking at all.

She had a chest infection last week, quelle surprise, she ALWAYS has a 'chest infection'. She wasn't well but then she's not been well for years and is pretty much house bound unless my Dad takes her out. Well this chest infection turned nasty and she ended up having to be rushed to hospital in an ambulance and having oxygen forced into her lungs for 48 hours as her blood oxygen was so low.

She remembers nothing about this, hardly surprising, so thinks everyone is making a fuss about nothing and is plainly not planning on giving up cigarettes. She is annoyed that the ambulance workers cut off her clothes! She is whinging about all the bruises on her arms from where needles were inserted...okay the bruises look awful but she needs to look at the big picture. She is alive, which was far from certain when she arrived in hospital. She was in Intensive Care for 48 hours! The woman is delusional.

If I am being totally honest I was really disappointed that she recovered. I was very much hoping that she would die...I have been waiting for it for years. She is, as far as I'm concerned, a nasty waste of space. She is very needy and everything has to be about her. She dismisses my DD's illness because it takes attention away from her and means I have an excuse for not living my life according to her script.

The more I look back on my childhood the more aware I become of how manipulative and unpleasant she was. Yet I would still say my childhood was happy...not so much my teenage years and beyond but that's life for you. Mum does like to the centre of attention. Fortunately for her my Dad still thinks she is amazing and is really pleased she recovered and will still be around shouting at him and being offensively rude for a few more years. I am not so pleased but keep all contact to a minimum so its not a major problem for me.