Nearly Christmas

Well its nearly Christmas and I've got it pretty much sorted. All the presents are bought and wrapped. All the food is either already sorted and frozen or ordered so that's good. We are not bothering with much in the way of decorations his year as DD is just too ill and finds any changes in room décor too hard to process.
My DM is in hospital again, breathing problems again. Obviously nothing to do with her smoking, last time she decided all the problems were because of some tablets she was taking to help with the ulcers on her legs...not sure how that could affect blood oxygen levels but she would know! This time she decided her problems are because a friend gave her a cold. DF says the friend didn't have a cold but DM is not hearing that. I've been over to see her a couple of times and she is even nastier and ruder than normal, all her brakes are coming off and she is loosing any inhibitions about being nasty in public. Not a nice person to visit. Still I do get chance to speak to DF which is nice as I rarely get to speak to him when DM is around as all conversation has to be centred on her and her alone. My ideal Christmas present would be for her to die...that doesn't make me nice but she is an unpleasant person who brings no joy to anyone, including herself. Also she will continue smoking so this drama will be played out on a regular basis until she does finally snuff it, why not just cut out all the messing around and just go for broke!
Non of us are particularly looking forward to Christmas even though we have planned loads of fun food, DP will be off for 12 days and that does cast a blight over the whole period. He can suck the enjoyment out of any situation. He has only just had 12 days off and that was while DS2 was still in college and DD1 in Uni, neither of them are overjoyed at having to cope with him at home the entire period over the holidays. DP claims he is looking forward to 'relaxing' as he is tired and needs a break after working hard all year...he's only just had a long break when he did sweet FA so God only knows why he feels he is so much need of a break. He was using this as an excuse for being ridiculously grumpy to DS2...he is such an entitled twat! Even he had the grace to acknowledge that I wouldn't be getting any time off over this or indeed any other holiday....won't stop him doing nothing for the entire period and spending his days flopping and being bored. He has done absolutely nothing to prepare for Christmas, no shopping, no planning, no cooking. Everyone else has done their share...DD has helped sort the menus and cooked some of the food for Christmas, DS1 has helped shop and has worked his way through a long list of jobs I had waiting for him, even DS2 has helped. But DP has done absolutely nothing, a big fat zero and HE is the one saying how tired he is...hard not to despise someone so self absorbed! He has no idea what any of his children are getting for Christmas and will only find out what DS2 is getting as the older 2 open all their presents in their rooms to escape him commenting on what they get. A pathetic excuse for a parent!
Anyway as you can tell we are looking forward to the festive period no end...only a couple of weeks and its all over for another year! In my dreams next Christmas wouldn't include either DP or DM...who knows maybe my dreams will come true one year!

DD's life is falling apart

DD has been declining rapidly all year and is now seriously unwell and struggling to find the energy to do anything. She became ill about 5 years ago and I remember how scary it was then seeing how reduced her energy was and how little she could do. God its almost laughable now to think we would both kill for her to be only that ill. She tended to come out with me every time I went shopping just to get out of the house... I did find it a bit claustrophobic as she was always there but now I would love for her to have the energy to come out. Last time we went to a shop...only M&S so nothing exciting, she found it all so overwhelming in terms of noise, visual stimuli and too many choices. She has effectively given up going into town as its just too noisy for her and she struggles to cope with so many people being around. This is the girl who would go into town every weekend with friends just to be in town!

She has so many new symptoms...pretty much constant nausea, anal leakage on occasion...that one she loved obviously. Her weird spasms are getting more constant...she gropes my boobs all the time and any other part of my body she can get to. She suckles, my finger mostly. She swears and comes out with appalling phrases...good job I totally know its not her or I could get upset. All of this is embarrassing her sooo much and really upsets her. It kind of feels like the after affects of a stroke, Tourette's and Alzheimer's....not a great combination for a hyper bright 22 year old!

She is spending increasing periods in bed semi dozing which doesn't feel like a good development. One of the worst aspects of her having ME is the lack of any information about how her illness is likely to progress but I don't see anything good on the horizon. She is declining so rapidly this year and I can see that continuing into next year. She can only decline so far before she has no further to go and dies. Maybe not in the next couple of years but it is coming and coming rapidly.

I spend most of my time trying to support her, emotionally mostly though she does need lots of physical support. The problem for her comes when she is too tired to have anyone in the room with her so has to cope alone. Not good. My emotional needs are met by DD and DS1 when he can. My DP is a total arse and had already stopped talking to DD before she became ill and hasn't stepped up to the mark now she so very poorly. He won't even talk about her illness with me...when I have tried to talk about anything to do with her he walks away, talks over me or deliberately changes the topic. He is utterly useless and I despise him. If I could afford to throw him out believe me I would and DD and DS1 would cheer as they both have no respect or affection for him at all.

My parents are useless, my DM refuses to accept DD is actually ill and will tell me every article that she finds with some ill researched and badly written report on ME. Trying to prove what, I don't know...that DD would be well if she wanted to be maybe. She has said that if DD was 'more positive' and 'relied less on her wheelchair' she would get better. When I have tried to explain ME is a chronic illness...like diabetes...my DM's reply was 'but diabetes has a physical cause'...that was when I totally gave up on her and have very limited contact now. Neither of them has seen DD since, and won't unless DD decides she wants to. Apart from anything else DM would be offensive about the fact DD has put on weight this year...I think at least a portion of it is bloating from residual kidney problems but all my DM would see is FAT and she would be nasty. So she can keep away from DD who has enough shit to cope with without DM. DF is fine but loud, which DD struggles with and as he is a total enabler for DM he has to be kept away too. If they don't like it tough...they offer no support so can stuff off. They aren't coming for Xmas which won't please them but that's not my problem...as you sow so shall you reap!

My DB is similarly useless for support...last time I saw him I was talking about DD and he said that he didn't want to hear about her because it was 'too depressing'. Well that's his choice but I don't need that kind of stupidity in my life and I can't see him loosing any sleep because I'm not in touch anymore.

I am struggling tonight as DD is in pain and so confused and unhappy. There is nothing I can do to make it better which as a mum is all I want to do. I am also really worried about DD's future, its going downhill so very rapidly and that's worrying. No one ever said life would be fair but this seems to be so far past just 'unfair' for DD and I would give anything for her to have more of a life. Its a good job DD is so amazingly brave and copes so awesomely with the crap that is ME.

Counting down the days

This close to Xmas 'counting down the days' should mean the countdown to Xmas but not in my house! DP has booked 8 days off work...not for any specific reason, he just had loads of holiday left and this was a convenient time for his ego (because he feels work will be able to cope without him) to take the holiday. Unfortunately it means he is at home for 12 days...there is no way I can describe the utter tedium of having him home for such a long period of time. He has nothing to do...other than his usual faffing around and he is bored and floppy. I asked him to take my car to the garage to get it looked and he wouldn't because 'he didn't know what to say'....god he is pathetic and such a baby! That's the sort of excuse I'd expect from a teenager not an adult!

He is filling his days with 'running'...not sure how much running he actually does as the place he reckons he runs is 15 minutes drive from our house and as he's only out of the house for just over half an hour it doesn't leave a lot of time if he is planning on training for a marathon....oh yes he is that delusional. He is also spending lots of time 'practising' his French...he thinks he is really good a French, and I will agree he is better than I am, he has listened some 'learn French' cds and is 'practising' by watching DS9 in French....with English subtitles. Not sure it achieves much other than annoying me as he has the volume on so loud. He is also messing about with a chess book he's had for well more than 10 years and is still 'working his way through it'.

Other than that he is 'talking' to me...this involves him holding forth on whatever topic he has decided he is an expert on and talking. I am not expected to respond in any way...indeed if I do he gets huffy..he is deigning to give me the benefits of his amazing wisdom so I don't need to speak! I have years of experience in ignoring  his monologues so just play deaf and find a job that means I need to leave the room. God he is dull!

So anyway we have 10 more days of this to go before he is back at work. Not looking forward to any of it. He will then be off for Xmas and will bore us all over again. At least this year my parents aren't coming over, not sure they know this yet but I am not inviting them and have made it clear we are doing nothing. Well if they ask they will be told. DD is way too poorly to cope with any extra messing about and noise!

On a happier note DS1 came home for a couple of days...by coach which he did find exhausting. He came because he wanted a tattoo from the lady who is doing his other tattoos...she is in Middlesbrough and the easiest way to get to her was to come home so I could drive him, and he could get his washing done, sort new rugby boots and a haircut and then go back to London. It was over his birthday but that was not by choice it just happened that way. It was lovely seeing him he was happy to get chance to see is sister and get all his jobs sorted...and paid for by me! His Dad spoke to him once...very briefly...while he was here. Didn't wish him 'Happy Birthday'...it was his 21st...or anything. In fact his dad has no idea what he got for his 21st...or really any interest! Not a great parent that's for sure.

Anyway I will go and continue my countdown to sanity!

Update: well we are down to only 2 days now. God its been hard....not helped by the fact he got a 'cold' and has been 'coughing' endlessly. Given DD used to get viral coughs that were so bad she'd get sent home from High School on a regular basis every winter and DS1 has asthma so can struggle with breathing so I am used to people coughing but DP really did manage to exceed everything I have ever experienced. He was relentless...too 'poorly' to do much, like go running, out to the gym or even go to his class. Not good as it meant he was home ALL THE F***ING TIME!! I had hoped he's go down and see his step mum at least one day when he was off...she is lovely and he hasn't been down to see her even once since his dad died which is beyond rude and ignorant in my book.

Anyway we are all still alive...if only just in DD's case. She has been very unwell but will, hopefully, feel better on Monday. Even if she is still poorly at least she can be poorly without her dad 'coughing' and being 'ill' around the place all day!!!

Update 2: he is finally back at work and we have had 3 prat free days. DD is really unwell at the moment so we have not been able to do any of the things we promised ourselves we would once we had some time for ourselves. Hopefully next week will be easier.

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.