Wednesday, 21 December 2011

Has it really been 11 days since i last posted?

It may sound clich├ęd but it has passed so quickly, yesterday i was genuinely convinced it couldn't have been more than a week since i clicked 'publish' on the post about the house. I think i am still in shock to a degree, i still cant believe all this has happened to us!

I have been trying to think of a suitable way to thank everybody for everything they have done so far to help us and im sorry to say i have come up lacking. To be honest, im not sure that even skywriting you each a personal message of thanks could convey the depth of gratitude i feel, nor could it explain how much this has changed our lives, and my own world view with it. I guess a simple thanks will have to do ( i am disappointingly low on pilots, planes and sky writing equipment), so thankyou all, so very much x



Things are on the up! We have found a house, a 4/5 bed in a town near here, i have met with the estate agent and the owner (both of whom are really nice) and have been to see the house. It really is lovely, it has a downstairs bathroom (Goodbye you awful toilet chair!) and a separate dining room which can be my bedroom until i can move upstairs. The owner needs to get it let to someone who wants to be a long term tenant and is fine with Housing Benefit paying the rent while i am unable to work. I told the estate agent and the owner all about you guys, i think it is safe to say they are almost as stunned as i am!
  And thanks to the incredible generosity of everyone who donated financially, we have now got just enough (after the site have taken their 5%) to pay the estate agents fees, the security deposit and the up-front rent! So we will soon be moving house. In fact, very soon! The initial 6 month tenancy will begin on the 9th of Jan, so i have three weeks to get us organised and packed! Eeep! (Anyone who has ever moved house feel free to offer advice in the comments, i am sure i will forget to do something very important!)

So! Now i am trying to pack and sort and de-clutter as much as i can without pushing myself too hard, but i am impressed with what i have got done on my own. And the children are excited and want to help too. I think we will get there, a few kind friends have offered to help me, and i know a man with a van who has said he is happy to move bits over there on the day. My best friend is already bringing empty boxes from her work for me to start filling up, so despite my being convinced otherwise, this really must all be real!
 I am also keeping my eye out for any second hand furniture i can get for the new place, am joining freecycle groups and so on. The town we are moving to has a few charity shops which could also be an option. I have three beds and a sofa to find but if all else fails we will camp on our mattresses and sit on dining chairs!

What else? We are all ok mostly, aside from the ill effects of the mould. The baby seems to be faring worst at the moment, it makes me so angry and sad to see him so poorly. I am counting seconds until we are out of here!

Oh yes, i met with a very lovely housing solicitor on Tuesday. Despite his sat-nav he managed to find his way here and i have to say it was good to meet him. He has taken our case on, but i don't expect to hear much for a while as it is so close to Christmas. The poor man, he sat and let me waffle on at him for what must have felt like hours, and was very polite.
 Talk about timing, but who should show up (unannounced) while the solicitor was here, but a man from the council?! I didn't catch his name, but i thought he said he was from the company that fitted the vents initially (that could have been me mishearing him though). Anyway, he looked at the vent in the kitchen and at the front wall from the inside and outside, blamed me for having the front garden paved (i didn't, it was like that when i moved in and i told him so) and then left, telling me he would be in touch.

With all that i am a little surprised that i haven't met myself coming backwards yet!

There is more i would like to say, but things being as they are (the blog has now had over 23,000 views) it probably wouldn't be wise, it is fairly safe to say that is it is no longer just my close friends* reading my brain sludge on the page.

I will update as often as i can, i wish you all a properly fantastic Christmas and a brilliant new year!
Love,
Broken Single Mum xx








* On this note, i would like to address the unsavoury comments which have appeared on the mould post over the last couple of days. As i have said before, i am happy to answer questions (and to that effect i have changed the blog slightly so that i can now respond to individual comments) and i remain happy to do so. However, i will not tolerate ill-informed (and in places clearly fabricated) accusations and name calling. If you wish to use the anonymity of the internet to vent your spleen please feel free to start your own blog, i can personally recommend blogger as a platform, i have found it quite straightforward to use. However, before publishing anything which you choose to state as fact, i strongly suggest you check your source. It may prove to be no more than idle gossip or fairy tales.
 Also, if you have nothing better to do with your time than seek out good, well meaning people and try to bring them down, would you consider perhaps finding a hobby so that something more positive may come of your spare time and energy? I am sure there are plenty of charities around who need volunteers, or you could take up a craft? Knit hats and booties for premature babies? Collect litter from public areas?  Feel free to come up with your own, but there are lots of worthy causes to choose from. Whatever you decide to do though, please know that any future spiteful comments you leave will be removed, as have your first ones.
 Thankyou for reading, i hope your day is a very pleasant one x




Friday, 9 December 2011

Questions and answers.

I have received a lot of questions in the comments section of the blog and i want to reply but i cant figure out how to do so directly (or if blogger even has that option). So i will go through the questions and answer as much as i can here x


liveotherwise said...
Is it worth getting in touch with your MP? Or local paper?

I am in contact with my MP, so far i have had two letters from them, one confirming they got my email, the other letting me know they had forwarded it on.
RE talking to papers, i really wasn't expecting such a reaction, and was a bit thrown by the idea of media type stuff. But having had time to think and having spoken to a very lovely PR lady (who contacted me through Twitter) i have decided to go ahead with it. There will be something sent out on Monday to test the waters and i will see how it goes from there. You guys will be informed if anything comes of it.

Mademoiselle Poirot said...
...BTW, just a thought: If you do need furniture, have you tried your local Freecycle group? People give away all sorts of things there including furniture...


I have had suggestions of Freecycle etc, yes, and this is a really fab idea. Unfortunately if i was to get another sofa it would likely end up with the same problem as this one - the mould would get in it. So i will keep this in mind if and when i do get to move, because there will be a few things i will need to find then x


Anonymous said...

I would like you to do three things for me;

1. Try and establish why you have damp. Is it rising because there is no damp proof course (usually a line of rubber 3 bricks up from the ground) or because the walls are thin and there is no cavity. Is it in a particular spot where something - soil, a wall, is bridging the damp proof course.

I have addressed this in the post itself, the damp started because there is insufficient drainage in the front garden.

2. Write to your MP pointing out the cause of your damp, how you should be a priority and nothing seems to be happening. Can you include a letter from your Dr confirming the effect this is having on yours / your children's health. I would also badger Citizen's Advice with the above, they usually have a housing team who will act on your behalf.

MP - done, well, it is being dealt with.
Doc - less easy, i have on the phone appts as i cant get into the doctors surgery. And many of the health problems we have faced which i know believe are because of the mould, i have previously just put down to being 'one of those things' or a bug going around, or just plain bad luck with our health.
Citizens Advice - i have an appt with a housing solicitor a week Tues, am thinking this will cancel out the need for CAB?

3. Have a look and see if you can bid for any houses that aren't quite your ideal. The most popular houses always have everyone bidding for them so you might have a better chance if you compromise on one or two elements. Try and spot the gems that others may have overlooked.

If i bid for a house i have no intention of moving in to is that not wasting everybody's time? Literally all i am looking for in a house is 4 beds and a separate dining room i could use as a bedroom. Not much there i can compromise on, though i can see where you might have thought i was wishing for the moon on a plate if you had just read my description of the house we missed.

flashsays.com said...
Sounds horrid. But is there a reason you cant get a grant from the council for a stairlift in the immediate future - while still looking for somewhere better?



Anonymous said...
is your children's father providing any support at all? Financial or otherwise? Surely he should be the one wielding the paintbrush to keep his children healthy. It is terrible that he isn't helping when internet strangers are :(
Christina, Wicklow said...
... I tried to send you an email but your link goes to google's home page. Is it brokensinglemum@gmail.com? ...

The link isn't a link hun (or it isn't meant to be), it is just the email address for this blog 'brokensinglemum@mail.com' just copy and paste it into the address bar in your email x
... Can I get your address where to send some a donation? ...

Very kind of you to ask, but in the interest of being up front and above board i have set up a GoFundMe account, you can find a donate button on the blog itself now. Thankyou very much for your kind offer x

...Oh and this is a bit random but are you a knitter, spinner, weaver or crafter of any kind?...

Funnily enough i am, or i was (will be again some day). I am big into felting, quilting, cross stitch etc, and that was what my proposed business would have been. Just you wait, once i am recovered enough to sit at my sewing machine again there will be no stopping me!  I also plan to learn to knit and crotchet.




Hopeless, helpless and getting Angry.

Last night i called the previous tenant of this property (for the sake of my wrists, we'll call them PT). I know the woman in particular has had some quite serious health problems since living here and i wondered, i had to find out if it could have been related to the mould.

So i explained about the blog post, told her how things were going and asked the all important question...
BSM - "Was there ever any sign of the mould when you lived here?"

PT - "Oh yes, when we moved in there was mould all behind the wood panelling on the stairs. In fact it was in the utility room and the floors in two of the bedrooms actually"

BSM - "So, did you speak to the council about it then? I mean, did they repair it or try to deal with it?"

PT - "Yes, of course. They came out and removed the floor in the two smaller bedrooms, they replaced that. I cant remember whether they fixed the utility room but i guess they must have done. They gave us money for paint too, so we could re paint over the worst of it once we had cleaned it all"

So they knew. The council KNEW before i even moved in that there was an existing mould problem in this house. They have let us live here, let me bring home tiny newborn babies to this place KNOWING that we would be breathing mould. 

I don't think angry and disgusted can even come close to how i feel.
All the headaches, the random unexplained illnesses we have suffered, i put it down to 'one of those things' and thought perhaps we were just unlucky with our health. Not so, it seems. God, we HAVE to get out of here, now, yesterday.

So, having established that yet again there are no suitable properties on the bidding list, i turned to private rentals. I'm not keen, i have had friends who have had some really awful experiences with private landlords but what are my choices? I can't just stay here, sit here on my mouldy sofa waiting for us to get sicker and sicker.

I find a place, it has not only a separate dining room i could have as a temporary bedroom but also a downstairs bathroom AND it is within the max limit for housing benefit (though it is the ONLY one in the county that i can find, thanks for that rental cap Cameron). Great, brilliant, but how do i deal with the deposit? Twitter to the rescue once more, @jaimelicious tells me that some councils do a deposit bond scheme. I have a quick look and lo and behold, they do do it! I'm trying not to get excited, but it does feel like maybe things are lining up a bit.
 Next step, check that the landlord accepts housing benefit, yes, they do (which in itself is nothing short of a miracle). Haha! Ok, then time to phone the council, see if i can get into this bond scheme thing.

SLAM.

That was me, hitting a brick wall.
"I'm sorry, we don't do bonds for people who are already in a council property, because you are secure in your tenancy there and a landlord could make you homeless in six months time. I do appreciate the situation you are in, and i will ask my manager but it's unlikely. I can put you through to Environmental Health though?"*

So, that is it. Environmental health will be in touch before the 23rd. And once again my attempts to lift my family out of this situation are scuppered, squashed, shot down in flames.

What am i supposed to do?

.

* I am paraphrasing, but this is as close to the actual conversation as i can remember.

Edited to add, after many kind offers of financial donations i have opened a 'fund me' account. Initially i will be trying to raise enough to use as a deposit to get out of here. If there is anything over that, it will be held in the account until i can move and then will be used to buy furniture for myself and the children.
Here is the link https://service.mail.com/dereferrer/?target=http%3A%2F%2Fwww.gofundme.com%2Fb40ls&lang=en thankyou guys xx

Tuesday, 6 December 2011

Confidence, mental health, responsibility.

 I can do a great impression of confidence.
Long before i needed to hide my physical pain from my children, i figured out that i needed to hide my insecurities from the world, to put on a mask. In a way, pretending things are ok has actually helped me. For the benefit of the children i have taught myself to focus on the positive, to search out the silver lining, to think more about how my actions and words could make other people feel. I like to think i am a better person for my experiences in the dark pit of mental ill-health, perhaps even a better parent than i would have been without it. Most days i even believe i am a pretty good person, a good parent, a good friend. The mask can sometimes stick, and those days, most days it's pretty good.
 
When i wrote the blog post, the big one about this house, i had that mask on. Powered by frustration and despair i hammered out a rant about the unfairness of the situation i have found myself in. And the response has been dizzying. At one point i literally couldn't keep up with all the tweets and emails and i was giddy with  the positivity and support pouring from my screen.
 
But tonight, with the pain so bad it is a scream inside my head again (after going to see toddler in her playschool nativity) my mask has vanished. I am alone with my insecurities and doubts once more. 
 I sit here now, crying, absolutely certain that i don't deserve a single thought, word or gesture of kindness that i have received over the last two days. I sit here, completely convinced that i don't deserve these children, these amazing people who i have been so blessed to grow with and learn from. The shadow of self doubt and depression, ever present, has won for a little while. 
Children are gifts you see, and you are supposed to take care of gifts. And looking around myself now at the children sleeping on this sofa next to me, a sofa i know has mould in it but i cant afford to replace (hell, it isn't even paid for technically) i feel like i have failed them.
 Yes, i never asked to become disabled. Yes, i never expected to be on my own with 5 children. But that doesn't mean that i do not feel responsible for us being here. It doesn't mean i am not mentally beating myself up every day for not being able to provide the things that are so important. 

Who do i hold to account for all of this? 
Myself.

Does that mean i have to accept 'my lot in life'?
Does that mean i should just sit back and be quiet and not make a fuss, as i have spent so much of my life doing?

No.

If i don't speak up, what is going to change? If i don't make a fuss how will anybody know what is going on? Doing nothing will change nothing. I owe it to these children, and even a little bit to myself to make something happen. I wont just sit and feel sorry for myself (though i cant lie, its likely that will happen at some point), i will shout, i will badger, i will pursue every option available to me to claw our way out of this frightful mess. I will go without the things i need in order to pay the bills, i will make a polite nuisance of myself to anybody who will listen, not just because *this* isn't good enough, but because that is what you do as a parent and as a parent, you keep fighting for what is right and you put the consideration of your children before yourself.

These children are my responsibility. You only get one childhood and it is up to me to make sure that theirs is the very best one i can give them. I want to be able to turn to them when they are older and know that i did everything i could to give them the childhood they deserve. No missed opportunities, no regrets. Ending a very unhealthy relationship wasn't the first step and it wont be the last. Tomorrow when we get up i will be the same smiling face they saw this morning and the morning before and the morning before that. I will continue to do all the things i can do every day to make them feel valued and appreciated and loved. And while they are sleeping, while they are at school, i will fight for them. I wont accept that this is as good as it will ever get. I won't stop trying and I wont give up hope.

.




Monday, 5 December 2011

Wow has this been a crazy twenty four hours!

When i sent my blog post out into the great wide world of Twitter i kind of hoped for a bit of advice and maybe empathy, at the very most i hoped somehow the universe would take a bit of notice and maybe sling a bit of good luck our way.

As i said, wow.
I have been totally floored by the warmth and kindness of the responses i have had. Offers of legal help, advice, even offers to purchase furniture for us have poured in, much to my surprise! I never expected such a rush of love and understanding. Last night, trying to catch up with all the tweets, DM's and emails i found my self actually shaking, such was the depth of the reaction i received and how much your words of encouragement have affected me.

I would like to point out here, just for the more cynical of those reading, that financial gain, furniture and so on, was never the motivation behind posting my struggle. My ambition was nothing more than a hope for advice, and maybe help, to get my children and myself out from this mould-ridden house, and to get the council to live up to their responsibilities in repairing this place before making another family go through all of this.
 I still don't know if i will achieve my goal, but i feel i have to try my best and explore every avenue available to me. In that vein..
I have also had some offers to help my cause through publicity. I have had to think this over a bit, i am not the most confident or eloquent of people in real life, but i am desperate to get our housing situation improved. And maybe hearing about my experiences might in some way help others who are having a hard time living in unsuitable housing.

So, i guess we just see how things go from here, if anything comes of this you guys will know as soon as i can get to the laptop.

Right now though, I am trying to think of a way to organise all the offers of help with cleaning off the mould and repainting the house. I figure if i can get everyone together at the same time we could really make a big difference in the minimum amount of time. I doubt i'll be much practical use, but i am totally down with making tea, coffee, sandwiches and biscuits as needed! My blog email is Brokensinglemum@mail.com if anybody would like to add their voice to the crew, or help me arrange this all!


In the mean time i am still pursuing help from my mp (Nick Gibb), i am writing an email for him outlining the issues i have had with this property/council and what i hope to achieve from all this (unexpectedly sleepy toddler and baby giving me laptop time FTW!).
 I am also hoping to speak to a solicitor tomorrow (i hope he doesn't call while i am at my toddlers Christmas play!) and while i have him on the phone i will ask him what is the best course of action with regard to the offers of financial help you have so generously sent me - i am concerned that any donations be all above board and used for their purpose and i want to make sure that anything that is sent to help us isn't swallowed up by a subsequent deduction to my current income. Confusing, but i hope you guys understand where i am coming from, i really wasn't prepared for all this, it never occurred to me that people might want to donate to help us!


Really, though, above and beyond anything else i want to say Thankyou all, so very much.

 Please keep sending out links to this blog, help me get as many people behind me as possible, and help raise awareness for other people struggling with landlords who aren't fulfilling their obligations xx

Thankyou xx
Betty Broken x

Sunday, 4 December 2011

There is so much milling about in my head.
I'm pretty upset.
I'd been bidding on a house (Council waiting list) and I hadn't realised how sure i was that we would get it, i mean it was perfect for us - 4 bedrooms and a bathroom upstairs, plus a downstairs wc (privacy for me and no more horrid commode) plus a separate dining room that i could have used as a temporary bedroom. I Google mapped the street, it was one street over from a good primary school, a distance i would have been able to manage in the wheelchair, meaning i could have taken the children to school myself. It was an older property so it would have reasonable room sizes, we wouldn't feel all cramped up together as we do now. It was in a nice road too, wide grass verges, trees, nice.

We didn't get it and i was pretty crushed.
I mean, proper tears, feeling hopeless and helpless and destined-to-be-stuck-here-forever, crushed. I mean, i had three social workers, a health visitor and my disability advocate contact the council to weigh in in our favour. If that isn't enough, what is?
I looked around myself at the current situation we are in. We are overcrowded, there are 6 of us in a 3bed house. I can't get up the stairs to bed so i have to sleep on the sofa (which is causing problems in itself), there is no space for a bed down here, unless i get rid of the sofa and buy a bed for down here but a) buy a bed with what? Pixie dust? and b) where would we all sit? 
 Not being able to master the stairs means i have to wash in the kitchen. Great for privacy, that. It also means i have to use the commode. You cannot possibly comprehend how much i detest that thing, nor how i hate having to use it. No privacy. No dignity. Nobody to empty it on any regular basis. Not nice.
What else? Oh yes, the damp. Our little house is the middle of three, a small terrace. In our front garden is the only downpipe on any of the three properties. Guess what? There is no drain and no soak-away under it, so when it rains our front garden just fills with water. This has lead to damp. I have lived here for almost 8 years and i have lost count of the number of times i have called out the council repairs team. They usually turn up, take a look and tell me i need a soak-away, then they leave never to be heard from again.
 The last time i complained and they sent out environmental health who initially tried to blame us for the damp, saying we didn't open the windows often enough (how he thought he could know that confounds me). By the way, i open the windows every day - i hate that stuffy feeing of old air you get when the windows haven't been opened. Eventually they said we just needed better ventilation, so the council installed an extractor fan in the kitchen and some weird air-circulating thing in the landing/loft.
 So far neither of these have produced a soak-away nor a drain.

March 2011 Front wall, left corner

Because of the damp we have black mould. It started under the lounge window, where the wall is cold and damp. Despite bleaching the wall, using every mould resistant product i could find, it came back again and again and each time it spread a little further along the walls. At the last count the mould appears on every upstairs window sill (where i cannot get to clean it off), there is a patch on the ceiling in the main bedroom and it is on the front wall, all along the side wall of the lounge/diner and now patches are showing on the back wall as well, even though it is south-facing, even though the extractor is on continuously, even though the window vents are open 24/7 and the i air the downstairs every day. 

March 2011 Front wall

All of that mould means so much extra work, pulling out furniture, bleaching walls (the scrubbing removes the paint and eventually the plaster). It would be hard enough on somebody able bodied, but i can barely stand when i am supported by two crutches. How the holy hell am i meant to clean all that up now? My children and i are breathing mould spores every day and the council don't care.

March 2011 Main bedroom (back of house) ceiling

What does this have to do with me not getting the 4bed i'd applied for? 

I found out today that part of the reason i missed out was because of the 'decorative condition' of this property. Apart from what feels like clear discrimination against my disability (i'll just hop up and run another coat of paint on the walls shall i?), i feel like it is an absolute sham of an excuse. Want to know why? Because when i moved in here it was MUCH WORSE!

Pic of a pic, sorry

 When i moved in to this property there was no ceiling in the hallway from the front door to close to the stairs. There were floor boards screwed on to brick walls. There was a hole in the floor of the main bedroom (ok, that is still there, that one has stumped me). The walls were pitted and scarred. The back garden was in such a state that a guy from the council came out and declared it unfit for use! That's right, they told me it was too dangerous to let my children play out there, that was the state of it. The kitchen consisted of two double cupboards and one single, and a long surface that wasn't attached to anything (ok, the council replaced the kitchen a year or two ago, but only because they had to by law).

Another pic of a pic, work starting on garden

Want to know the best part? They refused to help with any of it, hiding behind a clause in the contract i had signed in my desperation to get a suitable home.
I have paid, by scrimping saving and (mostly) borrowing, for a ceiling, several walls to be plastered, for a garden that cost me close to £4,000 to get up to a usable state (and even now, it isn't finished). 
 So yes, the plaster work hasn't been painted. Yes, there are screw holes in the wall from where we had a stair gate that broke. Yes, the entire house needs a good lick of paint. In fact the entire upstairs needs carpeting (except the smallest bedroom), the boys don't even have any flooring in their room. But you know what? The money ran out, i became disabled and now I'm screwed. I won't get another place because this one isn't "pristine" (to quote "... homes need to be in pristine condition to keep any costs incurred to a minimum"). I have absolutely no way of making this one any better than it is now.

But hey, i shouldn't moan really. I have no idea how i'd afford the furniture we'd need to use 4 bedrooms anyway.


Wednesday, 16 November 2011

Thin tendrils, wisps, around your feet
Rising up, your soul to meet,
Darkening, surrounding frail
Illusions of control
Pulling, constricting, suffocating,
Weight of gravity and black sadness
Draws you back toward the chasm gaping
Til you hang by one finger
Looking up from lowest point
Afraid to look down

Friday, 11 November 2011

Painsomnia and not posting.

Well, it may not technically be a real word (borrowed from @latentexistence) but it certainly feels real enough. My pain meds tend to wear off around 3am so I thought i'd share the joy with you. Aren't you so lucky?

I'm currently writing from my phone, laid back on my sofa (which is also my bed). I have my most coherant blog post ideas this time of day so it's handy to have finally got Blogger for Android figured out.

I am aware i've not posted for a bit. It's because i'm wary of creating that pressure on myself to post for the readers, rather than because I need to. It's what killed my last blog for me and I don't want it to happen again (though i'm actually considering resurrecting that, now that I have this seperate blog going).

I'm also aware that i've not mentioned my children much. Though they are indeed my purpose for existing i'm still not sure to what degree they will feature, mainly because this is my 'me' blog, about my shit and I don't really want to drag them in here.
Which brings me on to the other reason i've not posted, my 'personal' life. I've kept quiet about my decayed marriage but it is such a heavy feature in my life right now that if I don't get it out somewhere it's likely to drive me batty. So hey, lucky reader, you get to hear me piss and whinge about being disabled and you get to hear me piss and whinge about the Ex and all the crap involved with that.

Don't say I never give you anything.
Hugs n kisses n all that.

Monday, 24 October 2011

Monday, later.



Sorry for the tears guys, but this is what it is like. I pay a hefty price for even getting out of the house. Not that i begrudge doing it, i know how important it is for us all to be out of the house in the fresh air and it really did the children good to be able to run about and ride their bikes and scooters properly.


Taking the nasty medicine now, hoping for a doze. 


TTFN xx
Half term vlog week.
Monday (am).




Sunday, 23 October 2011


Sundays - pills and worries.

Sunday is pill day, the day my tablet organiser has to be refilled. I hate even having a tablet organiser, but i found that having to get all the various pills out four times a day was a real hassle and i'd often forget to do it. That is a Not Good Thing To Do. Pain likes to sneak in and bite you when you don't take the pills.


That right there is a lot of pills. Especially for someone who uses medication as a last resort. If i had a headache? I'd have a glass of water, try to lay down for a while. I'd only take a paracetamol if no other method was successful. 

These are a last resort though. I cannot move at all for pain unless i take these, i get nauseas and vomit, i get dizzy and faint from the pain. Sometimes it gets that bad even with the pain relief because I've done too much. Still, I take the minimum amount i can cope with. It leaves me an option for when the pain is worse, before resorting to calling out the Big Gun.



Morphine. Or to be more precise, Oramorph, which i think is more dilute than morphine itself. Either way, it certainly isn't jelly beans (and tastes like liquid evil).

A lot of people have joked about the pain relief i take. Well meant, i am sure, but still somehow it makes me feel they aren't taking my pain seriously; "You must be floating along all day on all that!", "Damn, if you ever have any to spare i'd buy it off you (wink wink)"*.
 If you are taking pain relief and it is getting you stoned, it is stronger, or a higher dose than you need. Though my pain killers can sometimes make me drowsy when they initially start to work, they have never made me 'high'. 

All this does worry me though. I should have recovered by now. Why isn't my pain lessening, why hasn't my mobility improved? I certainly want to be better, i try to push myself to see if i can do things yet, but invariably end up hurting myself because nothing has changed, nothing has improved.
A doctor i had never met recently decided i was ok to start physio (once i have seen the pain team to try and do something to control my pain). He told the OT that i *should* be fine by now and that there should be no movement in my pelvis any more.

I would like that doctor to experience my day. Even just a morning when i have laid just a little too far on my side. Because when i do that, the bones at the front of my pelvis overlap (so much for no movement, right?). They overlap and then at some point, they UN-overlap. This is so painful it leaves me in tears, and you can actually hear it when it happens. A rather stomach turning 'CRACK'. 

I am going somewhere with all this. 

This week i got my Atos form. I still haven't been able to even read it. 
I will read it, and fill it in, it has to be done. But the whole thing fills me with dread, i know i will have to be 'assessed' by a stranger who will judge me, even though he or she will know nothing about me or my situation. My own doctor wrote on my sick note "back pain". I think it's a little more involved than that, but will Atos understand that? Will they see the struggle that is my daily existence? Or will they just judge me to be a scrounger, afraid of work?


*I have never, and would never sell on (or give away) any medication prescribed to me.

Friday, 21 October 2011

Fun at the Fair.

So, yesterday we went to the Fair on our village green. Myself, all five of my children, my friend K and her two children.

It was the first time i had been out in the village in my wheelchair and i was so self conscious as to actually feel nauseas. You see, since the SPD kicked in at week 12 of Johns pregnancy (18 months ago), i have rarely been able to leave the house. There have been a few hospital appointments, some trips to the library while we had the motability car, some food shopping trips, but all of these things were in the nearest town or further away.
 And in all the time of me being mostly housebound i can count on one hand the visits made to me by 'friends' (other than K and C). So, understandably, i feel a bit awkward going out around here.

On top of that, I'm in a wheelchair. It draws attention and i really don't like it.

So, back to the fair.
The children had a great time, we were cold, overexcited and half deafened by the noise. Just like a fair should be really. Tommy spent most of the time with his (girl)friend and her Mum, trying on some pre-teen mock independence. Nathan, Ellie and Lottie had a fantastic time, going on any ride that would allow them on, as many times as i'd let them go. John was bemused and very patient with our frivolous activity, only wanting freedom from the pushchair just before we left.

It was the first night time excursion in my chair and the green was quite dark, not to mention criss-crossed with cables and such. I pushed myself about 90% of the evening so I'm pretty impressed with myself - i still don't have any gloves for wearing in the chair (mental block i think, buying accessories to use with it is like accepting it's here and i have to use it, you know?) and the wheel rails got pretty damned cold.
 Candy floss was consumed by all, i love those sticky grins when i (very rarely) let the children have junk and i think it completed the experience. By the time we left we are all pretty frozen (except John who was rather layered up) so we bought fresh chips to eat, just perfect.

There were a few uncomfortable moments, bumping in to (or being pointedly ignored by) people i'd rather have not seen (gossips, friends of Ex Husband) and i have paid heavily today for the exertion - my pelvis crossed again last night and the pain of it uncrossing had me openly weeping this morning, and in turn it has set off my back again - but it was worth it to be out, to see the looks of delight on the children's faces, and the triumphant glee on Lottie's face as she scaled the highest inflatable slide and threw herself down it.

I'm only sorry i forgot to charge my phone and the battery was too low to let me take any pictures.


So, a little catch up for any new readers.

I am Becki, i have five amazing children and i am disabled. There are, of course, plenty of other facts about me but these are the most pertinent for this moment.
 I had another blog (Pelvis, Interrupted) my first ever, but i never managed to get into the feel of what i had made for myself. So, after a particularly turbulent time in my life i have decided to leave my caterpillar blog and move on to a new place, which i hope will become my butterfly blog (if you'll forgive the clumsy nature reference).

My youngest child, John, is now 13 months old. He is crawling, trying out speech and days away from his first proper steps. During my pregnancy with John i suffered (though never officially diagnosed) with DSP (the more severe form of SPD). By 12 weeks i could barely stand, and yet somehow i carried on. I couldn't accept what was going on, the horrid pain or my increasing dependence on my husband. By the time John was born i couldn't lie to myself any longer, i needed help and i needed pain relief.

John, attempting escape.

Over the following 13 months very little has changed for me physically. I am getting around a little more, but that is simply through sheer stubborn stupidity. My pain is constant and sanity defying. I am on a cocktail of pain killers but still the pain is often enough to have me heaving and in tears. I live on the sofa as i cannot make it up the stairs.
 People have a lot of trouble understanding my pain and the mobility difficulties that have arisen from the damage to my pelvis. To try and give you an idea of just how loose the relaxin made me, my shoulders are still loose now, as are my knees, ankles and neck. The main areas of injury though were my pelvis and my back. The doctors are at a loss to explain to me what is going on but i think ive managed to figure it out. I think my loose pelvis did something to my back, it makes sense if you think about it.
 I had an MRI and the doctor that read the results was insistent that i have "an old injury" to my spine. I've never had a back problem before so all i can think is that he misunderstood the scan somehow.

It's all academic anyway, as whatever the doctors say, whatever anybody says, i'm still in pain. I still can't bear my own weight, i still cannot sleep for the pain, cannot do what i need to get done.

And now, i am single again.

And it is hard.

These are my experiences.

Thursday, 20 October 2011

Welcome

Hello there new and not so new readers.
Thankyou everyone who has followed me over here, i appreciate your patience and commitment.

Pelvis interrupted was good for me for a while, but so much has happened and so much has changed over these last few months that it just didn't feel like 'me' any more. It got harder and harder to post, all the while i was more and more determined to have somewhere to express my views and experiences and chronicle my (our) life.

So, this seemed the best option to me. To quote a good friend; "A change is as good as a rest".

Becki xx