Tag Archives: more than my symptoms

Pay it forward

Every now and again I stumble across a post on social media or a blog and I find myself relentlessly scratching an itch which may well lead to being blocked or worse, the ending of a friendship. Hopefully, this evenings’ itch won’t have gone so far but it has left me wanting to try and release the valve without hurting any feelings so here I am again, writing on my very dusty blog, trying to sort out the different threads of thought that are weaving loosely around the jelly of my once firm memory bank. Ho hum.

I love teachers and teaching assistants, playgroup volunteers and nursery staff, scouting and guiding and cadet leaders; all of those adults who are still so passionate about preparing the next generation for adulthood that they give up *extra* time and energy on top of their working hours to mark out a path of safety, strength, education and futures. I adore them all. With the restrictions and paperwork now in place it is often a thankless and penniless vocation.

Do you know what else is taken for advantage? The modern parent. Often, all of those people who take care of our children in ways almost unmeasurable, are also parents. They are people who lose time with their own children because they know how much they have already benefited from their passions. For example. I have spent all of my “spare” time this past month trying to get a Stay and Play group up an running. Unfortunately, because of my Fibro and my new meds still trying to settle, my spare time has often been squeezed into family time. Whilst my kids enjoyed a movie put on in the local community, I sat in a side room typing up safeguarding policy. Of course, knowing my own children and husband, Mr Bear sat watching the movie (and multitasking with a game on his mobile) whilst the majority of our Cubs did not. A lot of hummous and PomBear crisps were consumed. I like to mix the good with the bad. There was also birthday cake and pots of yummy olives. See? Ying Yang all the way.

This dichotomy is probably seen more often in my day to day life. I do not have enough hours or enough energy to do more than try to keep the balance as much as I can. I fail miserably far too often. I lose it and shout at my smalls. I have to nap leaving my bigs to be young carers. I forget to collect my meds to the point that I count out the pills to ensure I have enough to last me the next 24/48 hours. I say “maybe” far more often than I am happy with because I just don’t know if I will be up to taking them all to the park after school. I am constantly on technology too and this has reached breaking point this last month.

I use modern tech for as much as possible. To remember my meds, I have an app on phone that rattles away in the same way I imagine my insides to do. I make use of the Google calendar. I have a personal list, a family list, a husband list, a school list (or three) and all of the public holidays to point out how terrible I am that I didn’t remember to send Mothers/Fathers Day cards etc. I also play memory games because if I don’t use it, I may just lose it! I catch up on my friends and loved ones that I don’t see daily via social media accounts. I stumble over delicious vegan recipes to keep my Big Boy happy and exquisite brownie recipes to please us both. I get my daily news on the web. Seriously, I do. I also listen to the local talk radio that helps but I definitely don’t buy newspapers anymore. My diary often rambles into my blog these days and any letter I may have once handwritten is now neatly typed and emailed to those people who need to read my nonsense. I also find communicating with the secondary school teachers extremely convenient (hopefully for us both) and I prefer to have a “good old fashioned” paper trail (or internet bits…)

I organise our entire life via my mobile and laptop. Sometimes, I even find myself tapping away or catching up with Person X, Doctor Y, or Teacher Z at the school gates.

I know for some, this gets a few points knocked off my mummy scorecard. I’ve stopped caring, to be fair. Occasionally, 3:15 is the only time for these things to happen. To some it will look like I am not paying close enough attention to my 5 year old who has exited her classroom full of the joys of Year One and, maybe, they will see me again at 3:25, two more children in tow, still desperately getting stuff done on my phone. I’m sorry if you think that makes me a lesser mother. Actually, scrub that, I’m not sorry.

You aren’t walking in my shoes. You aren’t taking my meds. You aren’t making sure my kids are fed each and every day and you are most definitely not parenting my children.

You never knew that day when I was on the phone to my husband that our benefits were cut.

You were never told when I was speaking to CAHMs about the mental wellbeing of my older child.

You didn’t see the fridge the day I was on the phone to the Supermarket pleading with them to please try my card again so my children’s dinner would still be delivered.

You weren’t aware that my friend’s baby arrived safe and well that very day after a terrifying pregnancy.

You wouldn’t have noticed me wince as I turned my head away so my children didn’t see as my back spasmed at just the wrong moment.

You couldn’t tell that day when I had just found out the devastating news that my friend had terminal cancer.

Sometimes, it might not have been quite so life changing but you didn’t know it wasn’t when you judged me, either.

I ask my children every afternoon how well their day has been, what new fact did they learn, what did they most enjoy, what did they wish they could change. Every night, I kiss them and wish them sweet dreams. Some days, these things will happen from my bed which I haven’t been able to leave, I wonder if I still get judged as a stay at home parent when I don’t collect my own children. What do you assume I am up to when I don’t even turn up to collect them? Or, worse still, the days I can’t leave the car to walk them in.

If I had known seven years ago just how much our lives would change, I might have done things differently. Woulda, coulda, shoulda and all that.

When I see you, I wonder how you fit in the time to complete your makeup, and I am in awe of your organisational skills.

When I see you talking on your phone again at 3:15pm, I wonder if I should offer to help you with the pick up so you have an extra few minutes to talk in uninterrupted sentences.

When I see you push to the front of the queue, I wonder what you have cooking for dinner that means you’re in such a rush to get home today.

I look at our children and I am thankful that they are here, happy, healthy, educated, fed and loved. I don’t want to question your choices because I don’t want the reasons to be anything like my own. I don’t wish my medical restrictions on anyone. Nor do I want to imagine that a loved one is in pain, although please feel free to spread the joy of a new baby!

The world is so full of judgment already. We are constantly split into groups, measured by the colour of our skin or the jobs that we hold, divided by the haves and the have nots, forced into political camps that label as Lefty Liberals, Far Right Racists, Crunchy Greenies, even Recycling Rebels (but at least that’s better than the Breastapo or Feminazi. Urgh.)

Be kinder to eachother, please. Life can be so cruel all on it’s own that the idea of us biting and clawing at eachother chills me to my core. Spread the love not the fear, smile if you can, and remember that even rainstorms can bring rainbows.

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Does every black dog have its day?

Today was a day of self reflection and understanding. I am now emotionally raw and yet I desperately want to get through the second day of an extremely fascinating and informative course.

It was tough growing up in a “broken” home, being separated from siblings and losing friendships and cousin-friends overnight. It tore me apart and I’m still dealing with the repercussions of it now, 27 years later. Anxiety and overeating came first, the loss of my grandfather hitting me hard causing a spiral into depression. I don’t remember ever feeling free from my emotional toil.


I first considered suicide during secondary when it felt like everyone was talking whilst I became more and more invisible. I was bouncing back and forth between my parents’ homes and I felt like I didn’t belong anywhere.

By the time I reached 15, I was numbly coasting along. Getting raped is one of the hardest and most life altering events a person can go through. For me, it probably saved my life. I decided something for myself for the first time in my life. I wanted to live. That isn’t to say that my mind suddenly quietened and all was right with the world, far from it. I began truanting from school on a regular basis and I would spend days on end sat in Crystal Palace Park reading Discworld books or drawing my emotions. I hated the winter months when I would have to stay in school or pretend to be ill. If only my mental wellbeing was as important as my physical wellbeing, someone might have made the connection. I became good at lying, good at hiding things, good at stealing small items of makeup from shops, good at being the reliable daughter who they could worry about later. I was angry with my parents, the adults who were supposed to be able to help me. We tried family therapy and 1-2-1 sessions. I couldn’t talk freely with my counsellor. I was paranoid about them spilling my secrets to my dad and frustrated by adults talking *at* me, never seeing the whole picture and how much pain I was in.


Meeting Mr Bear, falling in love at first sight, feeling safe in his presence for the first time in years, gave me no purpose and the space I needed to feel safe and secure once more. I knew I would have his children from the first moment and said so openly. Being near him calmed me and my recovery could begin.

It is never that simple though. My depression has ebbed and flowed throughout my life. It is my constant companion both an allie and an adversary, the light and the dark. It is as much a part of me as my laughter and joy, my pretence and the unadulterated love I have for my family.


I am not my depression but my depression is a huge part of what makes me me. Just like my shadow, it lives with me growing and shrinking as my life is lived. I wanted to beat it, to somehow push it away and stop it from returning but that’s impossible. You have to learn to minimise it and lighten the load so that it doesn’t continue to consume and crush and rage against you. I’m almost dependent upon it. Knowing that it is my constant companion is hard. I’m jealous of those whose depression is a footnote instead of a glossary It isn’t fair that my depression is still a raging storm whilst others are enjoying their rainbow. But I get it.


Mental Health is not created equal. I wish it were. We are all different heights, different shapes, different IQs, and different sense of humours. Why should we expect anything less of our mind? Don’t many of us now accept that the brain is a complex and mostly unknown quantity? If we know that, why do we try so desperately to pigeon hole depression and ask for a one size fits all approach? We have shoes not only in a range of sizes but also in different styles. The fact that we have so much choice in what keeps our feet comfortable, safe, and fashionable but that the many facets of our psyches are expected to conform like neat pins in a board or soldiers on parade never ceases to amaze me. We are not born equal. We know a little of why some of us have to struggle against or live with poor mental health but there is still so much more to do.


I hope that our sleuth of bears are able to access the best mental health care and that any struggles they may face can be head on. After all I have lived through, the idea that our cubs might have to go through similar sits heavy within my heart. Are they doomed to relive the cycle? Have I passed along my fragile mental health genes? Only time will tell. In the meantime I will be doing my damndest to keep my black dog on its leash and teaching my cubs how to be mindful and mentally healthy as well as physically so.

Nice people have nice thoughts

I’m fat. I get it. I look at myself every single day. I don’t need you to tell me. More importantly, your kids don’t need to tell my kids. They know I’m fat too.

This morning, whilst driving to school in more pain than is good, my little fiery Redhead told me that her friend had called me “oomph”. I explained that as her wonderful aunt was also “oomph”, I was obviously in good company. Miss Redhead then explained “yes, but you’re still more oomph”.

That’s what you call a kick to the gut. 

This evening, my wonderful Unicorn obsessed daughter explained that she is writing a poem inspired by “Truth”. She has to write about a secret those at school won’t know. She has chosen to write about me and my Fibromyalgia. She has chosen to write about being bullied because her mum was so fat she needed a minibus instead of a normal size car.

A kick to the guts and ice cold shot to the heart.

My baby was bullied because *I* am fat. Nothing she could do would stop those children from finding me a funny one liner to hurt her with. Kids are cruel. That doesn’t just happen. Normally it is a sign that an adult they spend time with speaks with such prejudices and insults that it becomes a normal way to talk to others. I want to be angry at these little snot noses but I can’t. I feel sorry for them. To be 9/10/11 years old and already be aware of language that you know will cause mental anguish is such an unfortunate roll of the dice.

I have tried to raise our family in a way that allows them to see others in a positive way. Isn’t it brilliant that they also have a large family. How cool is it that she has Minion glasses. Perhaps we could give our old clothes to the charity shop so other families like ours can get good stuff for cheap. They give pocket money to all the charity pots they see, they offer help to anyone who needs it, they look after the local green areas, and they stand up against bullies, casual racism, slurs against a person’s shape and size or mental capacity. These kids don’t kill spiders even though they give some of them the curly whurlies. With all the good that they are, it is that very kindness and compassion to others which leaves them vulnerable to attack from kids who haven’t been taught that it is never okay to make fun of another person who is just trying to live their life.

I get it. I’m fat. I’ve always been the biggest of my siblings and I have spent my whole life learning the ever new and imaginative insults to the fat girl. Guess what? You insulting me isn’t going to make me magically drop half my body weight. I spent so much of my teen years hiding from mean girls; what insult would they use today? Are they going to aim for my weight, my second hand clothes, my intelligence, my big feet, my body odour? Maybe today would be a wonderful mixture of all of the above. I never once found their insults the key to change. Instead, I would hide inside myself, gobbling as many chocolate bars as I could afford and wiping snot on my unironed shirt, picking at threads on my washed grey black skirt and bashing the heel of my ugly clown shoes on the floor over and over. Trust me, I didn’t go running through the park home to fix up a tasty salad. 

A few years ago, I decided to improve my health. I walked for miles and miles, even completed a Race for Life 10k fun walk. I made sure I ate three meals a day, including loads of lovely veggie goodness and drinking at least 2 litres a day. I had pain but I was managing it well. I finally, for the first time ever, felt in control of my destiny. I lost 3 stone and maintained the weight loss through pregnancy to be my lightest since baby number 2, over 11 years before. Then the fibro took an evil twist.

I had a contraceptive implant, started 4 different regular medications as well as daily painkillers. I have a long list of terms to describe my condition and none of them pretty. I’m depressed, sleep deprived, in pain, and uncomfortable. Seriously, I know I’m fat. I am trying to get a hold of my physical health, to work on my mental health, to get back my fitness. My insecurities are not going to disappear with your “you certainly like your food” comments or the “now you reach for the diet drink” said under your breath and probably never meant to be heard. You can’t taunt me skinny anymore than you can tell an anorexia sufferer that they “look fine, definitely not fat”. 

Please don’t tell me what works for you or tell me what to try. If I want your help I really will ask for it, like I have done with my close friends and family. When the time is right, I will be able to get off meds that seem very much connected with weight gain, my already fairly good diet will realign itself and I will stop squirrelling chocolate bars in my bedroom, until then, try not to openly say thoughtless things in front of your children and try teaching them that we are all unique and all the more wonderful for it. Talk to your children about why we are all different and how when we assume something of a person, we may be doing them a disservice.

My disability is invisible but it’s symptoms are not. I’m fat. I live with it every day. I will one day fix it. Perhaps, one day, you’ll learn to be a bit nicer to the fat girl at school, to the short man at the shop, the kid at the park who can’t help being clumsy, or the person in the town centre who you can’t work out if they are male or female, as if their gender should ever be any of your business.

I’m fat. I’m disabled. I’m a human being. I’m also kind, considerate, and polite to strangers. I’m a daughter, sister, wife, mother, friend, and a member of the human race. 

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