Tag Archives: fibromyalgia

Spare the rod and spoil the child?

A bit long for some but worth a read – here.     The premise is that we learn to talk *with* “problem kids” rather than *at* them.

Many of us fall into bad habits when we are looking at behaviour we consider poor or bad but perhaps it is time we tried to see things from the child’s perspective and took the time to ask them what we could do to make the situation better for them.

Our classrooms seem so full today with Miss Prim’s class sometimes having 32 kids but the other class sometimes accommodating 35 kids at any one time! (I was one of 28 and then one of 18)

It must be extremely difficult to effectively cater for the many needs of so many different personalities and learning types, it is no wonder that we are failing so many of those children who have specific needs not best handled by overstuffed and understaffed classrooms.

Our dreamer most likely has some type of learning style best met by people who have the time and passion to engage with her. One of her former teachers was so rigid in his style that she failed to make any progress in his class (good job she started ahead of her peers) and when I discussed the issue with him, on more than one occasion, he nodded and agreed to try a few different techniques. By the end of the year I had been accused of bullying him and had resigned my position on the school governors board as the school stood by the style of teaching which had hampered more than just my child. Had I needed further proof, when Miss Prim entered his class the following year, she too made no progress but was blessed by having that cushion of accelerated learning that years of fantastic teachers had encouraged. Miss Prim, definitely not “one of those” children, failed to make progress in his class and yet I couldn’t get any of the senior staff at the school to take my concerns on board. 

Perhaps schools get stuck in the patterns of behaviour that see our children being put on the path that ultimately leads them to falling short of their true potential. Who do we blame for this cycle of failure? Is it the parents who don’t press the school to seek out new and improved models to help deal with the frustrations of our children? Is it the teaching staff who fail to recognise their own limitations and also fail to see that a different approach could make the world of difference not just to the “problem” child but to their classmates and even to other individual children who are finding things tougher than they can verbalise and who would also be helped by a method which removes some of the pressure from a younger age and actually engages with them in a way that ensures each and every child has the skills and environment necessary to reach their full potential?
Are we too late? Have we failed a whole generation who we should have taken the time and care to understand and to better support? When I look at my dreamer, I wish I had done more. She lost more than that one year. It took a great deal of excellent compassion and conviction from her next teacher to not only raise her attainment to the expected level but also to surpass her expected standard. This fabulous teacher – newly qualified – took the time to get to know her and encourage her. When our daydreamer drifted off to the land of make believer to stare at unicorns and wizards, Ms S was able to bring her back to the real world and take a moment to reassure our dreamer that she was capable, she could and would succeed, and they would find the solution together if necessary. 

I’m not sure if she will continue to get top scores as her secondary life continues, I guess it depends on if any of her 12 teachers (or more if they continue to drop like flies) has the ability to see their students as individuals or if they feel like the only option in our oversubscribed schools is to teach in hopes that 80% of the class manage to get something out of the lesson.
For some it may well already be too late. My lanky nephew has already had his education restricted by being put in a class with those students they consider to be a distraction, too violent, or just too “lazy” to teach. 

When my stepdad died when Lanky was 10, it hit him hard. He had lost his own father to a “new family” a few years previous and Pops was the only male role model he had (because my Mr is basically a big kid ;-] ). He really didn’t cope with the destruction he saw within his home life and with a diagnosis of Aspergus, education seemed to be unimportant and fairly useless. An outburst after he was mocked put him into special measures and he was left there to rot. This isn’t for dramatic effect. He was put into a class with all the other disruptive elements, many of which also had an ASD diagnosis with learning and/or behavioural concerns. They only had to be at school for 3 hours each weekday and they were assisted in their learning by an unqualified teaching assistant. They weren’t encouraged, they weren’t listened to, their parents were left with no answers and no way to make school life worthwhile for their sons. No one knew to try a different direction, no one knew to take each student as an individual with his own needs, his own learning methods, and his own future to help shape. It is unlikely that Lanky will ever be able to reach his full potential now. He has reached the age where he is now an adult and has been labelled as vulnerable. He is going to need additional support and assistance for the foreseeable. He had the ability to go far and do very well for himself. Now he feels like he isn’t capable of doing more than existing. He felt so low that he turned to the streets, began stealing from family and using “legal highs” to escape his existence. 

We’ve made progress with him, we might yet be able to find a way to move forward so that he can find a job, support himself in time. We had to go through months of hell first, we had to witness *him* hit his rock bottom and there was very little we could do but wait to help him get up. My darling nephew, once this happy, lively, sensitive, passionate, and creative young boy is now barely a shell. He has abused alcohol to the point of damage which might not be repairable, his heart is being closely monitored because his valves are no longer functioning as normal, he is finally getting help for his depression and, oh, he just turned 18. 

Is he the lucky one? We’re all here to support him in any way we can and it looks like we can keep him out of prison. Some of his classmates have already found their way in front of a judge.
I don’t yet know what the best way forward is but we have to do something soon. It isn’t just the lives of the children who are being labelled that is at risk. The entire lifetime of those yet 

to be educated is at risk and with it, our society as we know it. We have ignored the needs of our education system for too long. 

Our teachers need better pay and smaller workloads, our TAs need continued training and support to best aid the teacher and the student body, our schools need fresh equipment and more adequate learning spaces and our class sizes need to be reduced. 

Do we not want the best for those yet to come? Why are so many happy to sell out our children and grandchildren and what are they gaining in return? This isn’t a party political issue, this is a national travesty! There is so much to be gained if we only invest our time and our funds in the next generation. 
It looks more likely that we will leave not only “those children” who present as an issue in the classroom to flail in the system but the majority of the population which some are banking on to pay for their retirement. 
http://www.filmsforaction.org/articles/what-if-everything-you-knew-about-disciplining-kids-was-wrong/

You had a bad day

First up, sorry if you now have an earworm. If you don’t know the song, here you go!

It is Friday evening here and unusually quiet as half the kids have gone for an overnighter with the Best OutLaws Ever! Yes, I used the term out law instead of in law – long story for another day. Anyway. The two littleuns, the Lawkeeper and the Selfie Ginga Queen are away for the night ready for entertaining their fabulous Grandparents and volunteering out in the community tomorrow. The Duke of Edinburgh awards have been fantastic for helping us help our community and I personally love to see the rosie pink cheeks of a good day’s work on our children’s faces.

Our biggest Sometimes Ginga has been hard at work these past few weeks with GCSE hell but I’m quietly confident that he has put in all of the groundwork necessary to obtain the best results he can, honestly, and that isn’t just as his mummy but his teachers are also sure of his abilities. I’ve been really impressed with his dedication, timetabling, responsible attitude, and general restricted flapping. He’s got this!

We’ve had a long May with a virus circling the household and I fear I may have been the main culprit having not had a moment to rest with a Birthday full month. I’m ending the month with a sinus infection to add to my general bleurgh feeling and the inability to shift illness like I once would. I was one of those annoyingly healthy kids where I would watch my siblings in bed with coughs and colds etc whilst I ate dirt and bogies and the yuck of life which makes most adults squirm. Now, as a fully grown person in my own right, I seem to have been dumped with this autoimmune disease, chronic fatigue syndrome, irritable bowel syndome, fibromyalgia blanket as a 30 something and my dirty faced childhood is a distant dream. 

As a mother, I have always tried to just get on with things and I spent far too long ignoring depression and refusing pain meds which seemed to just make matters worse so I probably lived with a great deal unnecessarily until I sought help in 2010. Since then, I have never visited a GP so frequently and the added bonus of telephone consults has been an absolute body saver. 

** yep, this is a catch up on a blog I fell asleep writing and we are now half way through July **

I am now less than 48 hours away from meeting with a consultant to discuss my Fibro and all which comes with it. I am extremely excited and terrified in equal measure. It has been so long since a specialist took a look at me that I’m a bit worried that they’ll tell me that there is something else at work with my body and if they had known then I could have started this miracle cure years ago. That, of course, might just be wishful thinking. 

As I type today with just a few of my fingers because it is too sore to use more, I am also suffering from some type of trapped nerve type pain in my shoulder that has been persistent for a few weeks and it is now travelling down my arm. This same arm is being traumatised by pins and needles and also a sensation like a twisting burn across my wrist. It is the most irritable of symptom clusters and is slowing down my creative crafting to a crawl. No good to me at End of School year gifting.

I also feel like I need to “crack” my ankles – you know, when you flex your fingers and they all “crack” and feel better for it. I’m walking around, almost collapsing every few feet as my ankles seem to fail under my weight. I’m also experiencing hideous cramps which I try to rub and ease but, more worryingly, these spasms which are catching me off guard are taking my feet and making it point in funny directions or forcing my toes to spread out and it is taking all my resolve not to cry and swear.

Blimey, I sound like a right moaning Myrtle! That isn’t quite what I meant to do. With all this moaning and groaning it is also important to remember the positives too. I have 8 beautiful, healthy children who all got fabulous school reports and performed wonderfully in the exams we already have the results for and most importantly they’ve ended the school year as better people! Their generosity and kindness has been exceptional this year and they’ve all offered clothes and toys for children who were left homeless in London, pennies into collection pots out and about, and even offered many suggestions for fundraising this year. 

Our children have so little in the grand scheme of things; we don’t have holidays, our bikes and clothes are mostly secondhand or hand-me-downs, even toys are often sourced from charity shops and Facebook selling pages. The fact that they feel they have more than enough to give back to others is extraordinary to me and I am often humbled by their generosity. They don’t limit this to our wider community either. They have been playground friends, members of the school councils, advocates for improving LGBTQ+ awareness and support, and generally being “good people”. 

There is so much to be glad about in this world and it is easy to forget in my daily world of pain just how wonderful this world is. There’s another ear worm and is quite apt given that Pride is being celebrated around the world right now with beautiful rainbows being flown high and wide! 

I am Proud of so much and have always been. We are blessed beyond measure and as long as we hold that love for each other close our days will never be as bad as we think they may appear to be.

I’ll be there for you…

There are some thoroughly wonderful people in this world, I mean seriously awesome individuals. These people go out of their way to ensure someone else has what they need to do more than just exist. They are rare diamonds. Most people lack the courage to take the first step. That doesn’t make them lesser examples, it just means that they will, hopefully, one day find the moment they need to step out of their comfort zone and make a difference in another’s life.

I don’t have an abundance of friends, I have always found it difficult to do the groundwork on a friendship, I’m socially awkward and emotionally wary but this means that the firends I do have are the absolute best. These last few years I’ve had to lean on these angels and the support has been, without exception, tremendous. They have dropped plans, arranged sitters and have rushed to my side in order to prevent any harsh sanctions from Social Services or the hideous punishments that a person can give to themselves when they feel that they have done something out of line. They saved our family.

Last September, the Little Man was being a right toad. This isn’t unusual, in fact, this is our normal afternoon expectation and he’s old enough to try his hand and young enough to get away with it. Last September I also found myself at the start of the worst flare I have yet head. It wasn’t the pain this time, I’ve got much better at coping and masking the pain, it was the Chronic Fatigue, Insomnia, and as close to influenza as I have ever been. I wasn’t full of germs but my body’s immune system reacted as if it might as well have been. I still haven’t fully recovered. My body has gained the shakes, hot & cold flushes, eye sensitivity, tinnitus, temperature fluctuations, and a general feeling of lugging around the whole world by your shoulders. 

So, the story goes that I was sat on my armchair, nursing the baby after dinner as was our routine, Little Man went up the stairs and come down via the window. Completely heart stopping and utterly unbelievable as he didn’t have a mark on him and literally walked away with a tiny fracture on his inner hip/pelvis. We called for an ambulance and unfortunately the wait was rather worrying – well over an hour – but I kept him as still as he has ever been and eventually he was taken into A&E before being kept in overnight as a precaution. 

What happened next was actually more scary. My Fibro wasat breaking point, I had applied for disability benefits just a week earlier and this added stress tipped me over. The biggest Mr took the older children for a visit with Little Man and I was left with just the two smalls. I was serving a tomato based dinner so all clothing was removed – have you ever seen how much mess an almost 2 year old and a 3 year old can make? Not pretty – and because of my zinging muscles and nerves we ate in the living room. 

Two social workers turned up “just policy” and decided that they would take us on. For the next 9 months we walked on eggshells. I was crtiticised for not making the smalls “cover themselves” when they arrived. Apparently the house smelt of cat urine, which is somewhat true. We had brand new kittens and a mummy cat I was trying to keep inside. This leads to many smelly indoor litter boxes hidden out of sight from small fingers. They also said that the sheets were dirty on the beds. It is possible that we were at the end of the week before stripping, I can’t recall for definite but when their report again mentioned dirty sheets I was very cross. We had made sure that the newly rearranged beds (another criticism being that we had too many children in one room) had fresh linen the afternoon before their visit. They only had their word against mine but it is now down on record! A rather ridiculous thing to get hung up on it but that seemed to be their biggest issue. That and the smalls not wearing nappies on their initial visit. My perfectly potty trained smalls were perfectly innocent to two strange women in their home just before bath time but it was a huge concern for them. Their other main issue was making sure that the children had access to counselling via school. Yeah, in this time of money savings my children don’t generally hit the benchmark for *needing* counselling but the lack of movement from the schools meant that we had to live under constant fear of the unknown for months. It was completely stressful and is probably a major aspect of my continuing poor health. 

I still have nightmares of the children being taken into care because my health – which I have little to no control over – being blamed as was the case for us. If I was too ill to properly supervisor my children then I shouldn’t have had them to begin with. Not quite the exact words one of the social workers used but not far from it. That being said, I’m not sure what my health had to do with anything. I was downstairs looking after those who needed the watchful eye. My 8 year old son is more than capable of using the toilet by himself unless they felt that my time was better spent watching his urinary output but no one would actually answer that question.

No one else had any other concerns for how the children were being cared for and my darling, beautiful, wonderful friends who came to our rescue and sorted out the mess that was my crafting area, and rearranged bedrooms that I had been unable to help with for a while, and the declutter(!) It is so easy to slip up when you a. tend to hoard always fearing the worst and b. have a “reduce, reuse, recycle” mentality which means you gladly accept hand-me-downs and save money on school jumpers for years on end. They saved our family from still having to deal with the red tape monster that Social Services can so often be and it meant that our slightly alternative, every so subtly ‘abnormal’ family was kept together and on track. 

You know who you are. I love each and every one of you xxx

Honest Blogging

Today, I don’t feel like I measure up. One after another after another I have in someway hurt and upset my children and I find myself wondering, at 11.13 on a school night, how do I fix this? 

I am not the kind of mother I thought I was going to be, indeed, I am not the sort I once was in any shape or form. 

In the beginning I was caught up in my situation. We had planned the making a baby part but hadn’t considered the affording part as well as we might have. Two young adults, studying at college, both realising what we wanted and how staying at school wasn’t going to achieve it. It is, therefore, fairly accurate to suggest thatg we jumped into things with both feet whilst wearing blindfolds. 

I am not a lover of pink and I moved any pink outfirs to the back of the wardrobe when our first born arrived. We let them choose their own path and we encouraged building blocks, train tracks, dolls & prams, fairy wings, and all things Winnie the Pooh – a childhood love I was glad to share! I was never anti “girl” toy, I just really don’t love the colour pink and on little chunky babies it can have a hint of marshmallow about it (sorry not sorry).

By the time we got to our Little Dude we had a great set up which included Barbie having a tea party with Action Man as well as I fantastic train set that wound around the Grandparents ground floor visiting the teddybears picnic and Megabloks mountain before stopping at the Fairy Pirate Ship! Our aim as parents was to show each of our children that they weren’t restrained by what was expected by society and they showed us that they would each take and leave what they wanted from the choices available to them. I think we ended up with a healthy bunch of well rounded individuals who are liked and respected by those who count and mostly by those who can help them to achieve and succeed. 

The downside to our regime is that our children also have healthy debating abilities, a knowing sense of how to use their argument, and unfortunately, the acting skills to throw a tantrum with great ferocity and ear-splitting volume. They learnt the skills in toddlerhood but perfected them with their early teenage showdowns. 

It has meant a fair amount of biting of tounges and the occassional parental blowout of frustration. This fabulous Summer heatwave has made our wonderfully full household very tetchy and irritable, more mistakes than normal are being made, and butting of heads, egos, and emotions has been a major downside. 

We have had Sports Day x2, Theatre Performances, Proms, Duke of Edinburgh trials, Year 6 Journey, Pride, Award Ceremonies, New School Meetings, Tavistock groups, GP appointments, and my FMS/CFS consultants appointment which falls on Leavers Assembly/Leavers Disco Day. As a parent my life is extremly hectic and my feet are hurting and my body is aching, and my mind is melting. 

I don’t know how I am going to keep on top of everything that needs to be done and I’m snapping like a crocodile. Everytime I turn around someone is asking me for the impossible or shoving another form in front of my nose and more money is being asked for. I’m stretched to breaking point and so is our budget and, as most adults know, when the pounds are no longer stretching every single penny needs to be counted and preferably not by somebody else’s bank account.

We’ll make it work, we always do. My mental strength is recovering after my mindless spending on rucksacks, prom shoes, and kitchen utensils since loosing Vic. My physical health being so low helped to make the slip easier and hopefully my new ‘specialist’ should aid some recovery, with luck anyway. 

I just want to be able to be an active mother, to be able to keep a standard of tidyness so that I’m not tripping on teddies and hairclips, to be able to get back to cooking and baking, to spend quality time listening to them instead of wincing in pain whilst waiting for meds to kick in. I want to be a “normal” mum (if there is such a thing) and not the one with the funny walking and grimacing expression. 

And tea. I’d like to do it all whilst drinking a cup of tea that is just too hot to be around small people with vie like grips.

Failing all that, is it bedtime yet?!

All in your head

I first complained of pain when I was about 13. Every now and again I would get a killer headache or this brace like tightness across my back or my legs would go into hideous cramps that I could do very little about. My GP claimed it was growing pains, almost tutting that I was being dramatic. Before I knew it I was suffering on a more often than not basis. It made me feel awful, not being believed. I wasn’t a liar! I was known for my honesty and sense of justice but now I didn’t know how to get the help I needed. 

At this juncture my life felt impossible. My parents hated each other, we went for months between visits with Mother and my dad was left to raise 3 hormonal teens and was also a fairly selfish man who didn’t want to lose his single lifestyle. By the time I hit 14 I was near suicidal. 

My life seemed to be clouding over, forever in a dark and lonely place. I missed my mum. I can only admit that now, as a mother myself with all the hindsight that gives you. I absolutely needed a mother but my own was so caught up in the blackness of her own depression that she was completely unavailable. It would be another 20 years before a relationship could again be broached. 

All of my friends had fantastic relationships with their mums. I envied them and that hideous green tinge tainted my thoughts. I tried to talk to people but no one seemed very interested or they looked at me with pitying glances that just made me feel even smaller. Which was odd because I was actually putting on weight at an alarming rate.

I had secret stashes of paracetamol and ibuprofen. I knew how many to take to do a proper job of it and I would plan which days it would be best to finally take them, which days it would be my dad who would find me and not my little sister. I wrote a note, I didn’t hold back, I wanted him to know exactly how I felt. 

My physical pains felt like manifestations of my mental distress. Maybe it was all in my head. Could my weird, strange, alien thoughts be the reason for my aches and pains? At the time it made sense to me, it was my punishment for being such a nuisance for my dad, for being unkind to my little sister, for missing my crazy, unstable, often cruel mum. At 15, an attempt to become more social ended in a “friend” raping me. I told no one for weeks, for months. People saw that I wasn’t doing too well. The physical pain was unbelievable and yet everyday I continued in my daily activities as I pretended that everything was fine. I wasn’t fine. I was contemplating walking out into traffic or perhaps walking into the local fishing lake on one of my many late night wanderings.

I visited GPs a few times before I turned 18 and became a mother. No one asked me how I felt or considered that it was a question which should be asked of one so young. Then I was diagnosed with PostNatal Depression and that’s how it has been labelled ever since.

Nobody mentions it face to face. Some people have openly told me that depression is a sign of weakness, it’s mind over matter, that people should just get on with it and stop claiming….

Everyday, I do just that – I get on with it. I get on with the darkness swirling about my head and get on with the pain that is now my constant companion. I don’t think it is ever going to get better, not really. 

Everyday I wake with this constant thrumming pain throughout my body, it spreads into my brain and I realise that it is now a part of me. I’ve lived with my dark friend for almost my whole life and although the antidepressants I take to help combat the fibro quiten his whisperings and purrs, they never make it so I can live without him there. 
Depression isn’t a dirty word. It shouldn’t be the whispered word of quiet conversations or the hidden label worn by the woman with the fake smile. 

The pain I suffer from my condition isn’t all in my head. It is real, very real and yet I still get up everyday and fight for the right to rule my own body. It is an easier fight than the one I have been working on for the last 20 years. It hasn’t bested me yet, I’m hopeful it never will.

Mothering the hard way

I was fairly young when I became a mother. I had turned 18 about six weeks previously and had just taken the keys to my first home. 

I can tell you that from a very young age, all I could think about was jobs that helped people and being a mummy. I played with dolls for a lot longer than I would admit to my peers, I recall quite clearly wanting to breastfeed too which seemed quite alien having never actually known anyone to feed in this way. I loved the idea of cloth nappies and baby clothes hanging on the line to dry, trips to feed the ducks and hiding behind my fingers as I listen to a little voice saying “watch me, mummy!”

Nobody warned me about the sleepless nights – well they did but I thought it meant the occassional night because of teething or a bit of earache. Why did no one tell me that some babies just don’t sleep? Seriously. I’m pretty certain that The Boy got by on these 20 second cat naps for a solid three years. I am not exageragerating. There was only one night when he slept for very long whilst my breast was out of reach and I used it to escape. My depression was at the point where I just kissed him goodbye, nudged the Mr to look after him and I fled. 

It was gone midnight, I parked at the top of a hill which meant I had a clear view of our local area and I cried until I ran dry. It was also across the road from my younger sister and my heart leapt when I saw her light go on at near 2am. She welcomed me in, gave me tea, listened to my rantings and bemusedly told me that there was nothing she could do, I had to seek out help for myself. I wanted to cut her tongue out and feed it back to her. She was, of course, quite right. No one could help me but myself. I arrived home to the familiar sound of my tiny son’s wail and knew I was back where I belonged. Still wanted to kick my little sister under the table for being a know it all.

Also, dithering. I never dithered before children. I wanted to achieve something so I did and if I didn’t I just tried again. Or not. It wasn’t a big deal. When you’re a mother every decision counts. It starts before they are born with finding out the gender, writing a Birthing Plan, choosing pain medication, to give Vitamin K or not, to swaddle or wrap, to bottle or boob, choosing a name, a cot, a nappy brand….. When you reach the stage where you are choosing their educators you freeze all over again. You ask yourself why it took so long to settle on the Supermarket label over Big Brand Names when *this* choice is the one that really matters. I cheated. I couldn’t work out what I wanted from a school so I just let the council decide for me by submitting the forms late. This is not a recommendation. We were thankfully offered a place at the first choice school about 2 weeks after the Firstborn started which was handy because so far I really didn’t like the second place school we were given.

I thought I would do things differently when time came for secondary choices but it was no easier and I darn sight harder. Five years later, at the end of secondary school life, I’m still unclear on if we made the right decision but I think it’d been mostly okay. Best of a poor bunch possibly.

And that’s just the important stuff. Accepting the vegetarian declaration followed by another child being a pescatarian was a bit of a nail biter. Allowing Tellitubbies back into my life? I wish I had the choice to say no! I swear, the smalls know how to navigate our tellevision setup better than I do. That’s the other big small issue. Tech time. The (nearly) seven year old comes home with Internet based homework. With each year they spend in school the tech time needed continues to climb. I can’t even say much because, well, the Mr is Mr IT. He spends all day fiddling and fixing technology so it seems only wise that schools are cluing in to this situation and making students tech savvy but that ultimately means that the children have more screeen time each day than they do PE or playtime. 

Everyday I’m winging it. I have no guru waiting with sage advice, there is no one size fits all “idiots guide” and the only advantage I have over most others is that we have enough children to keep experimenting and trying to get it right.

I don’t think I’m doing too badly either. The strength of their characters is plain for all to see, the spirit with which they each grab life keeps me on my toes and astonishes me daily, their warm, kind, giving, generous hearts is often mentioned by those around us and we both consider ourselves blessed to end each day with our children having taught us more about the world, the human race, ourselves, than when we awoke. 

I find children to be so utterly enthralling. Yes, of course I have days when I am just glad that *my* bedtime has finally arrived but I would never choose a do over. I’m ready to start a new day and see how many lost shoes there are, how many chocolate krispy cakes survived the night, and how just one night will have altered at least one of us just enough to say that our family has grown in one way or another. 

There may well be 10 in our bed but not for all the riches in the world would I change it. I am already the richest of mothers and though it may be very hard at times, I’m loving every minute of it.

 

Signing Off

Or starting again.

Cards on the table, the past 7 months have been a complete and utter nightmare. I mean, things weren’t good for my physical health anyway, I was hit hard by the CFS and the return of the school routine meant that I suffered a dip which means the house takes a nose dive. No one was getting food poisoning, everyone was fed and watered, bills were paid, clothes were washed but rooms were chaos and my living room was crazy with crafting and outgrown uniform and, you get the idea. Our eldest wasn’t quite 16, the baby not yet 2, my priority was keeping the kids doing what they needed to do. I couldn’t do the house too. The Mr is only 18 in house training terms – a work in progress, if you will.

I digress. One afternoon, the weather still wonderful, the mediums wanted to play, the baby had a 4 o’clock call with the breast and the bigs were being bigs – “homework” was being completed. I saw the Dare Devil pass the living room and going upstairs to the bathroom. Normal, everyday, ignorable. A few minutes later the Fashionista and the Protester come running downstairs “Mum! Mum! Can you hear him?” 

No was the simple answer. DD was upstairs, what had he done? Only now he was downstairs. In the garden. Having avoided the stairs…

My crazy, climbing, clingon (as was) had taken a fall from the upstairs bathroom window. It’s a 10, maybe 12 foot drop. My heart was in my mouth and my stupid body was frozen. The Protester carried him in to me, whimpers and unshed tears; no blood and all limbs moving, relief flooded me. I rang for an ambulance, I rang The Mr, I rang The OutLaws. Nearly 90 minutes I held him as still as I could in my lap, talking to him, playing with his floppy mop of curls, telling him about my day and anything else I could think of to keep him with me. He told me he hadn’t hit his head but he’s 8! What does he know? My heart broke as he went off with Dad in the ambulance. I could barely walk, I wasn’t the right person to support him. 

Short of it, he was absolutely fine. A tiny crack on the inner side of the pelvis so a bit sore but other than that he practically managed to walk away from it thanks to some fancy hand holds and swinging rather than dropping. Jeepers, I love that boy!

The long of it. The house was a mess, our 8 year old was able to fall out of a window, flags were raised. Anyone who knows us would say that is a bit extreme but not everyone knows us, unfortunately. 

The Social Workers turned up the following evening. I was at home with The Smalls and because of how my body handles stress it was as bad as you might imagine. I all but freaked out when they left and all of our wonderful friends and family rallied around. The Mr’s week off was put to very good use, I reached out to my own Mother (who has been a trooper even to this day), battle lines were drawn. 

The system is flawed, it’s hard work to navigate, and you really get left in the dark. Immediately there was talk of child protection and despite not one other issue Social Services forged ahead. I can see why, I really do, but I loathe the not knowing and that was where I was left. I had to chase, chase, chase. I was proactive, writing my own “reports” on each child, summing up our flaws and trying to big up our good bits. The day of the Child Protection meeting I was certain I was going to be sick. I hadn’t slept in weeks, I was on hyper aware, the whole family were permanently tense. And then they cancelled. That was my breaking point. How could these people be the best judge of how I run my family when they can’t organise a meeting? Or at least have the decency to tell us before I had a hideously long walk to get to the Civic Centre with no parking. More emails, more chasing, another date set. 

They worked out that we had 80 years of parenting experience and this was the first time we appeared on their radar. Their concerns were my organisational skills (clutter), a lack of interaction with the Health Visitor and getting everyone counselling because. Yeah, just because. One was too selfless in her thinking, one not concerned enough, one so absorbed in their own journey which in itself was also a cause for concern – because being transgender is a big “we haven’t dealt with this before” issue for Social Services down our way.

I would have laughed if it hadn’t been for the tears rolling down my cheeks. None of it made sense to me. My house smelling of cats was their number one problem, apparently The Smalls weren’t talking as expected but I think my prepared list of words they can say put a big footprint on that. Listen people, if a 2 and 3 year old don’t want to talk to you when they’ve only known you five minutes that doesn’t mean they are somehow abnormal (count to 10, count to 10…)

The children were now part of a Child In Need plan and we would have meetings with 2 new Social Workers. Finally, 7 months after “The Incident”, our case has been closed and the relief was overwhelming. We expected and anticipated it and managed it as best we could. The OutLaws stepped up and helped with the school runs and looking after the Smalls so all I had to do was rest. I slept for 30+ hours in a 48 hour window and it was so very needed. Oddly, I don’t feel like I’ve recharged as much as I might have once hoped but I do feel like the weight has gone.

In conclusion;

>It wasn’t as awful as I feared

>It was as “red tape” led as I expected

>For some families, this could have broken them

>If I never see these four women again it wouldn’t leave me heartbroken.

>I am now less likely to tell others that it will be okay and that they’re only there to help

>They don’t help. They issue demands and give no thought to how people are going to “fix” the problems they have found

>It takes it’s toll on everyone
My son did a ridiculous thing and I was all but blamed because I should have been properly supervising him. They want you to do the impossible. As a disabled mother, I already feel guilt day in and day out. All the things I used to do without thinking have now become the most tiring  of experiences; just getting off the sofa takes a great deal of physical effort, a bucket load of pain, and a few internal choice words. I am no longer the easy going, carefree parent I used to be for the first four but instead, I am a worrier, a hesitator, a person constantly on guard and someone who has been forced to rely on others. This experience has made my motherly paranoia 10x worse and they will never understand the damage they have caused.

Social services can and do make a tremendous positive impact on families and often, quite literally, save lives. They are not infallible, they are, after all, only human and this means mistakes can and will happen. Granted, the mistakes for our family were made because of the system and not through malice but I think that makes us the lucky ones. Two women walked into my home and immediately made assumptions which I can’t blame them for. I *think* we are one of the good families, one of the switched on, educated, engaged families. There are others out there who are falling short for similar reasons as our own but I fear the children in those incidences will live with the repercussions for a very long time.

My boy thought he had been bad. He still feels that for those 2 weeks where it was “recommended” that he stay with his grandparents he was being punished. By me. He’s eight, he has no idea of what the real reasons were or that my lack of visitation was because I couldn’t move and not because I was angry with him. Our bond has been shaken and I don’t know if it will ever be the same. Some families have been through this and didn’t make it out the other side. My heart breaks for all of those families. I lived in daily fear of my children being taken and it took an army of people to make sure that I made it through. When people talk about social services now I get it. I understand that even if you have done nothing you still have everything to fear. These strangers have complete control over your children and depending on how their local enforcers view things could make life take a terrible turn.

I wish it wasn’t so. I wish we all spoke openly about our experiences and therefore forced accountability to be out in the open too. Social Workers don’t want to take away children, they don’t want to break apart families but the role they play in society means that is exactly what they do. 

When the original knock at the door happened I was totally taken aback. I asked them if they could hold off, could they come back tomorrow, it’s already 6:30 and the babies need their baths before bed. “Oh no” they said. “It won’t take long” they said. “Better to get it done straight away” they said. I was a disabled mother caring for two young children whilst her husband visited with the older children as he stayed at the hospital with their son. They shoulda woulda coulda left it and come back the next day. Too late now. Nothing can change anything for us but perhaps next time they will do things differently and will still manage to do the best by the family they encounter. 

The Big D

If you know anything about me you probably know that being a mother is everything. I’ve never not wanted to be one, I told the Mr on our first date that I wanted a big family and a home full of love and laughter.

I was never going to be “one of those” mums who allow themselves to be depressed…..

Blimey, I was an unthinking fool. 

My depression probably hit immediately. I looked at my beautiful blue baby with orange fuzz and the rush didn’t happen, that overwhelming sense of “wow” that I thought happened. I kept waiting for it. I knew with every fibre of my being that I loved them and would do anything that was needed to protect them and yet, I felt nothing else. 

I think we were 3 months in before the HV persuaded me to speak to the GP after a routine vaccination appointment. He shoved pills at me. I should at this point tell you that I was badly depressed as a teen, I was suicidal and able to spend a ridiculous amount of time alone, I regularly skipped school but was able to hide it from the adults in my life, I tried stealing from shops but no one ever noticed the slightly chubby school girl walking up and down the makeup aisle. I was utterly miserable and as pills were my weapon of choice – counting out just the right number of paracetamol I could take without my body self-emptying to avoid danger, the pills moving from pile to pile and each one having the name of the person who pushed me to the edge. So when I was offered pills by the Dr I felt invisible yet again. 

I battled alone, took more fresh air, planned a wedding, watched my little Gingerling grow. At the 11th month mark, I threw my back out and I was given a huge box of paracetamol and I knew the darkness was lifting. Had they been placed in my hand 6 months earlier I would have seen it as a sign that fuel had been given to my journey, that devil on my shoulder would have grown further and the light finally extinguished.

This has been the pattern for as long as I can recall. At times it was easier, the process shortened, the help more readily available, and then there was the time we do not talk about. I have birthed in many ways but by far The Dare Devil’s delievery pushed me to my limits. I had an urgent ceaserian section due to breech presentation. He had spun again and again before flipping one last time in early labour, bracing himself against my ribs, stubbornly refusing to exit as expected.

I cried throughout the warm up, I cried throughout the surgery, I cried throughout recovery, I sobbed silently all night long so as to not upset the other new mums. I had some of the best friends at this point. My two Young Aunts took control and made sure that I stayed healthy. They filled my day with visits and playgroups, they insisted on lunch out and let me cry when I needed too. It wasn’t easy, this recovery process is never easy and I don’t think you ever fully recover. I have nightmares on the weeks leading up to Easter and his birthday, as I did last night. I remember so clearly sitting in my car, the engine running, looking at the wall across the junction pondering if it would matter, begging for sleep that was never found. The light was so hard to find, almost invisible, buried in the darkest of corners where I was forced to admit that I wasn’t the best person for my baby son nor for his older siblings, forced to accept that I needed help and could no longer pretend that it was all okay. I was pregnant again before I asked for help, my younger sister holding my hand, reminding me that, just like Pooh Bear, I was stronger than I seemed, that not only could I but I *would* come out the other side and that actually, I wasn’t failing my family who were all safe and warm, fed and loved but that it was myself that I kept beating up, it was myself who had taken one too many beatings and needed time to heal and to feel the love that my Dare Devil was giving me. I had spent so long surviving that I had forgotten what laughing felt like, I had forgotten what fear felt like. I was numb for so long whilst I hid from storm clouds that I missed all the bits that reminded us that we are human, that we are alive.

I admitted the fear as I wallowed in the soothing water of my birth pool, I embraced the feeling of love as I opened my arms with trepidation and became a mother once again, I smiled as I looked down into the deep soothing eyes of my newborn and I knew things could get better. It took a truly scary moment 6 weeks later to know that it would. The Dare Devil flew. Or crashed. I sat nursing the baby whilst he decided to climb on the top bunk before falling over the edge. He bit his tongue nearly in two and I didn’t know if it was possible for a child to survive after loosing so much blood. He bounced. I’m sure he must have because by the time we reached A&E he was miserable and tired. He had lost his latch so could no longer latch and despite this ravine along the length of his tongue showed no other signs that he had been involved in an accident. That was the first day of my future. Don’t get me wrong, I still have days when I feel lost and alone but somehow I am better equipped to deal with the storm. 

My family, and the friends I consider family, taught me how to dance in the rain whilst seeking out rainbows. They taught me not to be afraid of a storm but to ride it out, to see it for what it really was, just a darkness not a blackhole. They said that it was okay to talk about it, to share that of course it can, and often is, the most terrifying of places but also to share the hope, to let others know they are not alone, that others have gone before and found their own path out, to allow me the chance to be the hand that holds another so they no longer feel so utterly alone.

You, yes you. You are not alone. Maybe your depression came hand in hand with the baby, maybe it came from a young age and a chaotic family life or innocence lost to another by force. Maybe it is the result of years living with pain that no one heard, the physical condition which has no name, no cure and no hope.

You are not alone. There are many friends waiting to offer a handand they are ready whenever you are. There is no time limit, there are no conditions, you can have the support time and time again if need be, we really don’t mind. As long as you know you are not alone because we are here. Always here.

#depression #pnd #postnataldepression #mentalhealth #youarenotalone

Crash and Rebuild

Fibromyalgia, the illness that keeps on giving.

This past year has seen my living condition deteriate. My joints have becoming incresingly stiff and tender with the lightest of touches sending a seering pain through my arm making holding hands with the Toddler a rarity. Likewise, my knees are working against me so when said Toddler decided to wander close to the road I had a challenge reaching her.

Today was a perfect example of how stress changes my delicate hold over my body.

Yesterday, my CFS (chronic fatigue syndrome) hit hard and I was asleep for the night at 8pm – issue no1: I didn’t take my night time meds. I woke around 2am with everything screaming at me – issue no2: where did I leave my meds? FibroFog is a kicker. Found some and then looked at my extra big bed filled with the Mr and child 5th, 7th, & 8th. No room for mummy 😦 Starting to sound like Peace At Last, if you ask me 😉 so off to the Pre-schooler’s bottom bunk. Oh I’m so glad she’s got a delicate bottom – issue no3: over sensitivity. Every spring in that mattress wanted to say hello but my impolite response seemed to be ignored (obviously learning from the children) Around 6am, I heard the start of the alarms. It took 10 minutes to get off that bloomin’ bunk and another 10mins to walk the 15 steps to the loo. By this point I know I’m on a losing battle. Found the wonderful tramadol and flopped on to my slowly emptying bed. Game over – issue no4: joint lock. My shoulders pulled together and clicked, my hips pulled apart and locked, and my back hummed the inner hum of a mother on the edge.

I admitted defeat and the Mr stepped up and took charge. I often moan about his helpfulness but he didn’t miss a beat. I think we both knew it was due and we are in the incredibly fortunate position of having the Mr’s parents ready, willing and able to help out. 

The whole family has felt the implications of an accident last September but it is only know, 6 months later, that we can start to move forward and destress, hence my body fighting back. I’ll talk more about that another day but for now I want to just be thankful for the NHS, mostly, who continue to provide me with pain altering meds although I’m waiting for a new referral which may lead to a new combo! Also, for having a family who understand that my body is a bit more than a little broken and so step up and help when help is most needed.

I had the whole day to myself today which was used for sleeping and another day to myself tomorrow which I’m going to use for more reviving. My FMS shows itself in different ways to my sister and probably to other lifers too. Today, I was ruled by the fatigue and governed by the joint pain and nerve sensitivity. The fog kept hitting me hard so comprehensive thinking was somewhat delayed and now, at silly o’clock, the insomnia wants to say hello >.> but I’m going to say Night Night regardless in the hopes that this yawning is a positive sign…

TTFN – ta ta for now
#fibro #fms #fibromyalgia #CFS #insomnia #family #NHS

Mum’s night off

I had made wonderful plans all in advance (this is not me as I currently never know when a bad day will hit!).

I paid hard earnt cash for a train fare and a hotel room for the night.

I had everything packed, I even remembered my toothbrush before I was ready to leave.

Boom. Every single digit sang, every limb as heavy as a sack of potatoes, my head suddenly squeezed like a boa constricta had it locked down for dinner, my heart pounding second after second before randomly stopping and then exploding through my chest. Weekend over.

Does my body hate me? Every week I pay attention to a new symptom, for example, my right hand pointing digit has been stiff for a good while now and last week it looked a little bruise. Today I could draw a circle across half of my hand’s back as I outline this tight, puffy portion of skin. Good job I can type with four fingers, I guess :-/

However. In true Mumma Bear style I decided to fight back. I couldn’t do anything about the train fare and at £22 it was a loss we could just about cover. The hotel room was a different matter and, quite frankly, I wasn’t about to lose a good night’s sleep!

Here I should mention I have issues with talking to people on the phone. I won’t accept unknown numbers, I’ve learnt that restricted numbers tends to be the GP calling me back, anything that looks like a call centre gets sent to voicemail. Making calls is hideous. I get clammy, twitchy and I can feel the bile in my stomach rising 😦 normally I would try to find an email address and go from there but I had no choice with this. We had less than 3 hours to sort something out and sort it I did!

The lovely lady up in Birmingham emailed the “Booking Gods” explaining that I wouldn’t be able to make it up north so was there any possibility of getting a bed in the closest branch to me here in South London… Success! There was a bed available and it had my name on it. 

I lost a few hours as I needed a lift from The Outlaws but I was determined to spend a few glorious hours all by myself with no “mummy, can I?” or “Mum! He hit me” followed by “she hit me first!”

I took a shower uninterrupted. I sat on the toilet without chit chat. I trumped without apology! For 15.5 hours I could just relax and stop for the first time in I don’t know how long.

Do you know what I realised? I live for the noise, the chaos, the never ending questions starting with “why?”, the mess – so much mess!- and the hugs. There are too many days were hugs aren’t possible, when I have no control of the pain and the slightest featherlike touch releases the kind of noise only bats can hear. I want to get as many hugs as I can whilsy they still want to hug. Slowly but surely, those days are numbered. 

#timeaway #fibromyalgia #disabledmum #hugs #anxiety #showernotbath #largefamily