Tag Archives: fms

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?!

Enjoying the little things

I don’t have particularly fond memories of school. I stood out in Primary for being the first in my class to have divorced parents and then we had the only Stay at home single Father who was loved and adored by all the mothers and even the all female staff. When I moved to Secondary I was placed in a very small class (18 students) of exceptionally gifted and talented 11 year olds. It seems I had a natural gift for English and Maths which put targets on all of us. We were the geeks and/or nerds of the school and expected to lead the way for excellent results during the next 5 years. My saving grace was an incredible group of friends. 

We were a quirky lot, got down to work when we had to but also found the time to laugh and break the stress of the day. We all dressed in black one year to fundraise, one of us could speak passable Klingon, another hid a shed full of animals and is now a Vet Nurse. We were good for eachother and I made some life long friends who will never understand how much they meant to me at a time when I felt extraordinarily lost. 

One of the girls and I had a very up and down relationship; she was my bestfriend and also my achilles heel. She knew so many of my secrets and she occassionally slipped up and would dump me in it with one boy or another that I was head over heels in lust with and it would all end in tears. Looking back it was fairly typical teenage hiccups but, also, I thought of her as a cousin or stepsister. That’s the relationship we had. I told her all the darkness and she would try to find me some light. I put up with her catty side because I loved her dearly and it was nothing to the way my own sister treated me. Her family were, and are, awesome. Her parents are some of the coolest going and they never seemed to get fed up with my constant visits. They are truly diamonds of the South.

My bestie and I fell out around the time of our GCSEs. It was a biggun and it took me a very long time to forgive. Too long. We would find eachother over the next 14 years and have a quick catchup. I was at a different point in my life to my school friends. Happily married, a houseful of kids, chicken pox, washable nappies, and the start of my aches and pains. She was a working woman, living her life the way she wanted to and still getting through her own baggage. 

Then we hit 30 and whilst I was still making babies, she was starting a rollercoaster that she never planned on. 

She was having shoulder pains which they were struggling to indentify and eventually a bit of a push from mum about an “unrelated” issue made the doctors look a little deeper. Yeah, cancer. This woman who had lived her life in the positive had been hit with a killer blow. That’s when it stopped being about where we were in life and it came back to a group of friends who had each others backs. 

I had missed my bestie. The odd sense of humour, the dark laughter, the sage advice. I was glad to be able to reconnect even if the circumstances were less than ideal. Oh, who am I kidding? Less than ideal? They couldn’t have been worse. It shouldn’t have taken cancer to bring us back together. Any hurt that happened half our life time ago should have been well and truly buried. It was buried. I knew that we were a couple of teeny boppers just finding our feet and hurting inside because of things we had no control over. 

We laughed again, giggled inappropriately, enjoyed giant yorkshire puddings and afternoon tea. It was simple. I want anything for it to be simple again. 

Her cancer isn’t shy. Her Doctors have been doing a fabulous job at pushing it back, holding the flood gates. The multipe surgeries have helped, certainly she finally got the breast reduction which had always been a back seat “one day” – something we had a dark laugh about. We also chatted about the special one of a kind face mask they use to hold her head completely still for targetted treatment. She tells us that there are these fabulous murials on the ceiling rather than crappy hospital tiles. The staff are extraordinary too. They go above and beyond to make sure that all of their patients are as comfortable as possible. 

We often moan about waiting times, prescription costs, time hanging on the phone whilst sorting out appointments, and yet, our NHS has gone above and beyond to help my beautiful friend. It does so every single day around the UK. 

That word seems to be said so often now. Cancer. There is sound scientific reason behind it too. We have a 1 in 2 risk of being diagnosed with cancer across the course of a lifetime. That’s some seriously scary odds. The good news is that we are increasing the odds of surviving every single day so for the majority of people who get dealt the Big C card, they will beat it and go on to live happy, healthy lives. www.cancerresearchuk.org

My friend got given the rubbish hand. She has managed to hold off her ending for longer than she was first told. I am so glad she did. I found my friend again, just when I needed her. I’m so incredibly blessed. She has helped me to live again, just at a point where she can’t. Hold your loved ones close today and everyday. Don’t weigh yourself down with hate, work through it and let it go so you can enjoy the daily grind – okay, not enjoy but you have to count the days that are normal as a good thing. I do the night rounds at home, checking in on each child, removing the hard plastic dinosaur, tucking teddy back into bed to avoid an early wake up alarm to find him, turning off the cd player, and brushing the fallen locks off the faces. Today has ended well and I enjoy knowing that we made it through another day. 

I don’t know what happens next, I suspect it will be awful. I want to remember the little things like daisy chains and pizza parties, blue lemonade and bent chips. It’s the little things that matter the most, they all add up and make amazing memories. Yesterday, Today, Tomorrow. I’m glad I have the opportunity to revisit, to make anew, and find time to look back.

Love you, V xxx

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. 

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

One painful step forward, two excruiating steps back

I rang the doctor today, cried as I explained that I was in pain, that I really needed to see a specialist now rather than wait *again* for yet another GP at the practice to see that the regime of meds I’m on simply isn’t working.

Nope, no can do. Ring again tomorrow and talk to “The Man Who Can” only he was the one who said that upping my vitamin D would help. If only it would. 

Every day is now a struggle. From the exercises I do to get my legs in a working state before leaving my bed to the exercises I do with my neck and shoulders to try and sleep at night. I can no longer tie shoe laces, or put my hair up (nor brush it first), putting on a coat is a struggle and taking it off more so. And what I miss most, lifting the little ones. I can’t grasp them enough to pick up, I can’t sit them on my knees because of the pain, I can’t snuggle tight if someone can see the wince of pain in my eyes, but, I’m still breathing, my days are not yet numbered, I *do* wake each day and the pain reminds me that I still have time. 

Time to say I love you, time to say I admire you, time to eat too much, time to laugh until I pee myself (8 babies = not very long!), time to stop and take stock and time to remember that I am me. Fibromyalgia might be my diagnosis but it isn’t who I am. There are days when I might forget that I am a writer, a musician, a cook and a baker, a joker, a lover, a sister, a friend, a daughter, a mother and then a person managing as best she can with what is now her disability.

I’m also going to be late!  

#fibromyalgia #nhs #morethanmysymptoms #disabledmum #largefamily