Tag Archives: family

V is for Vanishing

I’m sorry to have been quiet for so long but it has been a long and difficult month here in the Bear Cave. I actually have 3 or 4 half finished blogs that I should finish and edit and will try to soon but for now I just want to reflect on the passing of my beautiful friend, Vicky.

We had such a hot headed relationship with many ups and downs but since she died, I keep thinking about are the times when I must have hurt her and she never deserved it. Like the time I slapped her when we were in year 9. She called me a b****, and rightly so, but in my defence she had taken my diary and showed my crush all of my embarassing teenage ramblings.  We were besties again by the end of the day and she never got the £5 she was promised for nabbing it. Ha! Then there is the hilarious start to our friendship when rival school girls join forces against the kids from schools we had never heard of. We complimented each other in many ways, she was the Ying to my teenage Yang and we were both thoroughly happy about it. I miss her so much it hurts, physically hurts. The morning of her passing, I had planned to visit with her again. Once a week, at the very least, I’d drive in tears to the St Christopher’s hospice, I’d wipe away the tears, plump my cheeks and slap on my smile. We had our “smile” in common too. We both used to hide behind a perfectly performed smile for decades whilst our insides were crying and screaming for help. For decades, we had both lived in the shadows of our depressions, we learned how to live without having people see the dark circles from restless nights and we hid our secret food consumption, although some would argue that point and our expanding waist lines would back them up.  Vic knew my deepest, darkest fears and never once did she tell of my feast and famine relationship with food. 

When I had counselling as a young person, it was Vic who I told the whole truth too. I was scared of my dad being told about how hard I felt the breakup of my parents’ marriage, how lost I felt when we were pushed from pillar to post and from one girlfriend to the next, and why I missed my kind, sensitive, generous Grandfather who provided the stable father figure I desperately clung to and who had been cruely ripped away by Leaukemia just as I hit double digits. Vicky heard all of my woes, she held my hand, and she helped me past the worst of the pain. 

I wasn’t the adventurous one of our small group. I was stable and quite happy to keep my feet on the ground where they belonged. Our friend, El, would talk of climbing mountains and flying planes. Vicky would listen with wide eyes and awe whilst I stood shaking my head with a big fat nope. It was no surprise to me that she abseiled down one of the tall buildings of London and she thoroughly loved every minute. Last year she would recall in great detail all of her many adventures in her “Not a bucket list bucket list” and we would swap names of complicated pills on our joint efforts to combat our painful bodies. 

At out last gathering of friends, she giggled over the silliness of the two children now exploring her house and laughed with delight as the smallest of them climbed on to the cat’s radiator bed and found herself in a miniture swing. We had to stop for a photoshoot before the little madam squawked and asked for help! Vic was in such high spirits but we could tell that the cancer was winning this time around. She was repeating herself and not making complete sense. We were watching her slip away from us as the brain tumours took her from us.

I spent a few hours in her company that penultimate Saturday. Her darling Mummy was on hand and also one of her newest and inner circle friends was ready and willing to chat for a while and share stories of grey iced cupcakes with brilliantly colourful cakes underneath. She told of many tea and cake catch ups and the ease in which their friendship blossomed but that was Vicky summed up. Fiercely loyal to her friends and no time sinkhole people who took more than they would ever give. When we found a moment, just Vic and I, the words fell from my lips onto sleeping ears. I wanted to tell her how much I loved her, that she meant the world to me, and that the last three years were the best of gifts from her to me. I needed her to know that we would all miss her terribly and that it would take an enormous truck to fill the gap she left in our lives. 

I said goodbye to her that day not knowing if it would be the last time I could. When I got the text from her sister letting me know that they had got the final curtain call, I dropped. Here ended the best of people. She vanished like the light from a candle in fresh summer breeze and blessed us with this most beautiful summer sun. It was no surprise when she arrived for her greatest ever party, that she did so with style and a huge splash of pink flare! I managed to sit on the chair with the best view of her. I listened with thrumming ears as her wonderful friends spoke fondly and with love, I sang through the songs as they played not caring if anyone else would mind and my Natters and I clung fast to each other. 

Afterwards we shared great stories, laughed and cried together and toasted this amazing example of what the human race has to offer. Mother Nature, God, Allah, Zeus, the little green aliens… I don’t know who exists and who doesn’t but if there is an almighty (or several) they have a very odd way of sorting the curds from the whey. The Die of Destiny has been rolled and mistakes have been made. 

Vicky was one of the good ones. She filled our lives with pink and fluffy and cats. I owe her my life, truly. She stayed with me when she had no reason to and I love her for it. 

Vicky, I miss you. If there is an after, I hope it has cats, cake, and a lovely pot of rosie lee. It needs to have deck chairs and the sound of the sea lapping on the shore, fish and chips in the paper wrapper, and cheesy love songs, lots and lots of them. You will stay with me forever and a day. Love you xxx

Peace be upon us all

I had the opportunity to have a thorough run through of the 10 commandments and how they relate to my life. I very much enjoy being able to explore my spiritual beliefs or lack there of. 

To make it clear. I would place myself somewhere between Atheist and Agnostic. I explore as much religion as I can and consider if there is a place within each that might fit me. I’m still looking.

Predominantly, I look towards the Christian faith. I grew up with a fabulous grandmother who was very firm in her Catholicism and she enjoyed scaring God into us. I can’t say she was very successful but she stayed true to her faith until the end. She was a stern and complex individual who fled her home in Ireland to offer her illegitimate son a better life. She married my grandfather and raised a total of four siblings together in the best way they could. My grandfather seemed to shun religion, he openly scoffed at Sunday Best and I don’t remember him visiting Church except for hatches, matches, and despatches. Only one of the four children seem to have a connection with religion today and her own children have found Allah. Islam has brought peace upon them and they are active, happy members of their communities. I love that my cousin seeks comfort from her maker and leads her life in a way that honours his teachings. Her quiet faith brings strength and support and, I imagine, brings its own questions and a journey to the answers. 

We grew up being brownies and beavers – both branches of organisations with God, Queen and Country at their cores. The Girl Guides, 1909, was started to respond to the specific needs of girls and young women, whilst the Scouts was started the year before. Robert Baden-Powell wanted to encourage young people to be responsible, capable, God lead individuals. I spent week after week pledging to live my life under a code of honour which I never thought twice about. I would follow my dad to the Methodist Church for Mothering Sunday and other calender events before hot footing it to the Salvation Army to take part in the tambourine performance and hear another beautiful sermon about the Lord. I admit to finding great comfort within the church walls, I learnt things that school would never teach me and was read stories of a time long ago with men and women of courage and faith. If I hear the choir sing today I can feel my heart swell and my own voice joining in. 

As an adult, it is from the communities with ties to the Church that I receive greatest support and love. My friends, religious and otherwise, welcome me into their homes and into their hearts. They stand shoulder to shoulder with my family offering them unconditional love and an overwhelming sense of being welcome – mostly. 

I spend my time between the fantastic congregation of the Salvation Army, I listen with an open heart to the words and with an open mind to their structure and then willing give more of my time with my Baptist family in the hopes that their love and guidance will sink into our family as it did with myself as a child. 

The youngest Gingerling very much thinks we are Christian. We go to church sometimes and we close our eyes when Mr A (for Awesome) tells us to open our hearts to the Lord. She’s a very astute nearly, nearly 7 year old (6 and 4/5). She has been told that good Christians go to Church and listen to what the people say. Our dear friend and Major Redhead always spoke in a way that our Little Sponge understood and would have her listen intently before asking what a word meant or by nodding with a “we do that, don’t we mummy!” by way of acknowledging the words flowing into her. 

I can see the older girls all seeking something, all listening, all questing. They, like myself, are willing to listen, to feel God in their lives. In many ways I hope they do find what they are looking for. The way of the Lord sits so well with our church family, the glow of his wisdom is beautiful to behold. If only it was so easy for us all.

Whilst talking to the Good Rev about the commandments I found it easy to answer his questions truthfully and whole heartedly. He makes it very comfortable for me and I respect him greatly for it. I fear that he could not support my son with such easy grace. His Lord made it very clear, 2000 years ago, that there is no place within his heart for my boy. And yet, if I apply the 10 commandments to my son I can see that his place in heaven would be well deserved. A kinder, more sincere and honest a human being would only be found amongst other beautiful young people. They live their lives by a code of conduct that is based upon the words spoken by our parents, grandparents, great grandparents. Do no harm. Do not lie. Do not steal. Do not cheat. Respect your elders. Protect those who cannot protect themselves. They don’t even use any Lord’s name in vain preferring the plethora of profanity in the English language or the good old almost swear “oh for pete’s sake”, “frickin’ heck” or “fiddlesticks”! 

Why is my child not welcome? I can’t ask this of the Rev just yet. I want to know but I also don’t want to hear that my child is somehow less worthy of any God’s love because his inner being has been nestled into a body that feels alien in nature. I do not know enough about Islam, Jehovah’s teachings, or other holy scriptures to know how my boy would be seen or received. All I know is that he is pure and he is good and if a god does not love him for that then he cannot be the true saviour of which I seek. 

And there in lies the conundrum. I look for a place of belonging, not just for me but for my children too. I cannot listen to a chosen mouthpiece of God and have them tell me that my child is not worthy, not welcome. My understanding of religious faith and doctrine is too limited. I have yet to find my spiritual leader, I know not if I ever will.

So many lives have been lost this past 24 hours. Some to life limiting conditions, some to old age, some to war, some to famine, some to disease, some to a violence without a name, and some because of a man who seems to have lost his way and may have uttered the name of a Lord he may or may not believe in. The loss of so many children, possibly 25,000 every single day, is not easily reconciled. I imagine God has been listening to many prayers today. I hope that many of those prayers have been answered in one way or another, that those mothers, fathers, sisters, brothers, doctors, nurses, friends, emergency service personal have the comfort they seek.

Perhaps we all (okay, maybe 90%+) seek answers from a higher power when times are tough. I am open to seeking the truth, the answers, the continued questioning. My love is with you all, always. I will not stop seeing you as my family and any Lord I find will welcome you too. 

You’re still my baby

I watched you sleep that first night in a plastic crib next to my bed. I couldn’t reach you with my new favourite scar still recovering from your arrival. The midwife, Hazel, “walked” you  over to me, she said she loved it when the babies were still new enough that their legs stiffened instead of folding up. She handed you over and I held you close all night long. Your long legs filled the newborn babygrows and your beautiful orange fuzzy head wasn’t going to cope with the first size hats! 

As you grew so did my love. You outgrew the crib and slowly but surely outgrew the cot, before I knew it you were at school and then secondary. That was when I noticed. You weren’t as happy, you lost confidence, you seemed unsettled in your own skin. I tried to help, to offer an ear and to try and relate but you knocked me back. You didn’t want me to relate, didn’t want my empathy and you pulled away. 

I was saddened when your peer supporter got in touch. I wanted to be the person you relied upon and I felt that I failed you. I didn’t, you told me as much. You wanted me to know but didn’t know how. Having a buffer helped you to communicate with me and made some breathing space for you.

My heart broke when I saw the red lines from where you cut and smashed when we realised that you were suicidal. I couldn’t help you, this part of your journey you did alone. It was almost a relief when you finally admitted what was going on. You were my son, no more the hormonal girl of yesterday but my son.

I have never been more humbled than by your open and honest expression that day. I thought I was losing my child, I was terrified that you were following my own dark path of depression and I didn’t know how to help you there, I’m barely helping myself over 20 years later! 

For the last two years I have watched you transform. The last summer holidays you were so happy, so free spirited and filled with this bristling energy which was such a joy to watch. I felt awful sending you back to school, truly. Watching you make the decision that your education was worth more than your wellbeing almost broke me. I would have done anything to stop you retreating back inside the shell of your female persona but your adamance demonstrated, yet again, that this journey was your own and I was just a rather useful passanger. 

The day we legally changed your name was just awesome. I could see the calming effect it had on you and the pride you took seeing your name in print. I know, I know, I had to have my meddling way with name order but (and don’t tell your dad this) I was never as keen on your birth name as he was. It was my choice to add that middle name and, being mum, I wanted to be able to keep that bit of you. I will own it. I choose your name because I wanted you to know that there was no ceiling upon your life – you can go as far and as fast as you possibly may, I want that for you, to know that it is okay to actually stop and make a life wherever you think is best and that I will continue to love and support you no matter what.

I made a promise to you, to the baby that swam in my belly all those long years ago, it went like this:

Baby, I don’t know whether you are a girl or a boy but I already know that I love you more than I ever thought possible. I will fight for you until the end. I will stand in front of you to prevent you from harm, I will stand behind you and push you when needed and I will stand beside you always. I love you, Baby. If that is all I can offer you then I hope it is still enough. 

That has never changed, it could never change. You are my baby, you’ve always been my baby, you will always be my baby.
I am so completely proud of you. It is my honour to have you call me mum. 

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

Users of the road

I got my driving license almost 13 years ago and I think I’m a pretty good road user. I’ve had 3 claims on my insurance which have happened in situations which I couldn’t avoid.

The first happened whilst I was 6/7 months pregnant with No3. It was entirely the Mr’s fault. He went into the back of a hatchback because he anticipated the driver being more aggressive about moving on to the roundabout. With car damage and her whiplash claim, our insurance paid out over 10k. That held our insurance back for the next five years.

The second accident, last year, was my fault because I allowed myself to be bullied by another driver to take a gap I knew I couldn’t make. He drove off into the distance whilst I was left to exchange details with the parked car’s owner and a 1k claim to repair the wheel arch which I caught with my fibreglass trimmings on the minibus. 

The last happened just this month and I’m so bloomin’ cross! I parked the car and we went in to playgroup. When I came out I heard a car crunch over something right next to my brand new mobility car – I do not exaggerate, I had 22 days of ownership on my Black Beauty 😦 The bad driver must have reversed into her, felt the impact, drove off. Not a note, not a “does anyone know who this belongs to?” Nothing. Now I have a £100 excess and I’m waiting for the company to collect BB to do the repair.

We’ve been very lucky, no damage to humans just to vehicles and bank balances.

Then we look at the Mr. As well as being a fairly good driver be is also a cycling commuter. Yes. He is one of those nutters who speeds along the cycling super highway to work in offices all over London and he Loves it. Personally, I am not a cyclist. I know how to cycle but my overly rotund posterier just isn’t designed for those ittybitty seats :-/ 

Mr has been hit twice, if my memory still works, whilst *walking* in our local town centre. As a cyclist I think we are on 6 or 7 accidents. One wrecked the bike but saved the man, two meant hospital visits (technically there is a 3rd but you don’t count the cyclist being dippy and going over his own handle bars 😉 ). He has permanent damage and recurring pain and he *still* gets on that bloomin’ deathtrap and zooms off at least 5 days a week. 

Last week, with storm Doris raging around us, he again cycled off, cool as a cucmber and brought himself home without a scratch and proud of a new personal best thanks to Doris helping him on his way. 

When cycling is mentioned on social media, it is normally to scorn the cyclist. Just this weekend a friend posted about cyclists using the road instead of “the perfectly good cycle path”. My response was a little irritated but also, I hope, a polite nudge to remember that a cyclist is a road user too and he isn’t hurting anyone by being on the road instead of the path. I’m not sure she agreed but, for once, every other comment was also to point out the same reasoning. I am blessed with open minded friends. Even C understood why most don’t bother and, of course, she’s allowed to be irked by another road user regardless of the number of wheels and the size of the engine.

It’s a funny old world. Just this evening overtook me because sticking to the 30mph speed limit was too difficult. It’s a limit not a target! The number of people I see on mobile phones is shocking and I often wonder how many people drive without following the legal requirements. Driving is expensive when you add it all up, it’s easy to see why some blur the lines slightly but those who drive oblivious to the rules, I just don’t understand.

If you get 3 points for speeding it is 3 too many. If your insurance is too high try to change your vehicle, don’t just drive without it. Is that phone call really necessary? Could it wait or be put on loud speaker? If you want a drink or 3 leave the car at home. Call a cab and factor the cost into your night out. Seriously, do not drink and drive.
I am someone who tries to avoid being tardy and I get secretly irritated by other people who seem to always arrive late but in all honesty, I’d rather be late to my appointment than early to my grave.

Be safe, people.

#betterdriving #cycling #limitnottarget #callataxi #soberdriver

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