Tag Archives: chronic fatigue syndrome

New Year, Old Musings

December was a funny old month. I spent far too much of it sat on a hospital waiting room chair, I had tests that left me in crisis where I had to leave the site or vomit all over the shiny clean floor, and meetings with Consultants who basically told me that my condition is still mostly invisible and even my new secondary condition is playing spot the inflammation. Yay.

In order to stop wallowing in my own room of pain and because it is 6 am on a Sunday morning where sleep played hookie for the night, I have decided to muse on something my big boy happened to say the other day in an off-hand, barely a thing, way.

“I was more scared of telling mum I was a vegetarian than telling her I was trans!”

Say what?? I have always felt that our parent/child relationship has been good and solid. We are open, honest, challenging, thought provoking. I never knew that one of them might have been scared to tell me something and if my outspoken, head strong, opinionated, first born can’t talk to me, what on Earth are the others holding back?

Don’t get me wrong, I know that children aren’t going to tell their parents everything and there are certain things I am not yet ready to hear, yet I didn’t realise I had ever said anything to make at least one of them wary of my reaction. And of all things, vegetarianism. That’s their hot button? Wow. How had I let this happen?


Admittedly, food is a big for me. I like my food, my belly fat rolls are a prominent reminder but I only ever discuss it in terms of eating healthily, looking at where your food comes from or how it is harvested. We even “enjoyed” watching Kill it, Cook it, Eat it on the beeb and would warn the children before giving them the option to stay up late to watch it. I’m fairly certain that it was these series that set my Big Boy on his path to being a (new) Vegan and, he suggests, probably a Raw Foodie or whatever the term will be in a couple of years. He is passionate about it to the point of becoming very upset with himself for fearing he isn’t getting his message across. I love his enthusiasm, his thirst to do what is right before what is easy. He sees a challenge and he drives himself to do his utmost in the name of his cause.


I had mentioned that I would rather he didn’t become a Vegan whilst we were still paying the shopping bill. The alternative products can really stretch things out. When I was following a popular diet for a while, moving from cow’s milk to almond milk was way outside my comfort zone but I found I quite enjoyed it and was able to eat porridge (cold with a little syrup or honey) as a breakfast meal once again. Pregnancy and hyperemesis really took its toll on my dairy intake and looked elsewhere for extra calcium yet never explored “milk” alternatives, I just did without them. However, it was an expense I couldn’t justify as my diet slowly moved back to the family norm. The cheese is another woah product. I put my Bursar hat on and tut loudly knowing that for his little block of cheese I could buy two thirds of the family block of cheddar. I have absolute joy in buying extra olives, chickpeas, lentils, and mushroom. It is fantastic to see my kitchen once again being used for the purpose of proper scratch cooking. I miss the fun of combining ingredients and enjoying new flavours, a joy which not being able to stand or sit upright for long periods has robbed me of. The eating of extra veggies, beans, pulses, and whole grains really doesn’t bother me at all. I dislike the pushy, judgemental, vindication which I have often come face to face with from Vegans. I want my children to make decisions based on the research and evidence of their own making rather than because one of their favourite YouTubers decides that the grapefruit cleanse is the best thing ever. Perhaps, somewhere along the way, that message was somehow lost. I’m really quite uncomfortable with that realisation.


If such a simple “you do you” message was lost, what else have my children decided to say or not say? If he had said “I was scared to tell dad!” that would make perfect sense. MrBear is a card carrying, bacon worshipping, veg avoiding, meat eater. The more meat the better. ALL of our friends know that if they want to thank him meat or some kind of alcohol will do the trick. If he can have it with extra hot spicy sauce then you will probably be in line for next Mrs B, should I ever shuffle off first. Seriously. The man lurves his meat smothered with chilli. I have never understood it. I openly say, in front of the children, that that is a very bizarre way to maintain ones body and taste buds. It is even more annoying because given that he gets to eat twice the adult male calorie count for the day thanks to his epic cycle commute, I’m the one who carries every excess calorie he seems to consume. To say in his presence that bacon is no longer an option is to open yourself up to all kinds of not funny jokes and “all the more for me” boasts.


Perhaps, what I was unable to convey to my wise Big Boy, is that when I ask “why?” to each of his statements, it is because I want to hear his sound and reasoned argument. Maybe I have lost the ability to ask those questions without them sounding loaded or like I have an agenda. I could live without meat. After a while, I would most likely no longer desire to add chicken to my salad or minced beef to my cottage pie. I can see myself quite happily eating in a meat free manner. Perhaps I have never actually said that to him.

I know I often speak in ideals. Our own little homestead. Chickens for fresh eggs, a goat to milk, pigs to harvest and swap with other homesteaders for some of their own produce, a polytunnel to fend off our beautiful English weather and a greenhouse to potter around in. In my dream making, it is entirely plausible that I failed to set straight my views on animal cruelty, testing on animals, forced breeding in dairy cows, dire battery cages of egg layers and the by products of these animals so widely used that the meat is now the by product. I don’t see how but I have to concede that I don’t always know the answer and I certainly have become less proficient at getting my words straight when my pain levels have begun to rise. I know that he feels genuine distress when he considers the lives of animals within the meat industry and I am completely on board with his choice to become a vegan. I’ll manage the cost, I’ll encourage new foods, I’ll search for better footwear, and I will stand beside him whilst we tell his father to stop being such a tit. He deserves my support and he has more than earned my respect. Can I say that we will never again butt heads or talk with great passion about the view from our side of the fence? Heck no! I doubt that he would actually want me to stop. The challenge I bring in to our conversations is a tool I will continue to use to better equip him for the world. His father is not the only one who will put down his life diet choice but he will probably be one of the only ones to turn around and stand up to any other tit who dares to tell our Big Boy that he is wrong in those choices. He is a daft so and so at times, my Mr, but his heart has been owned by our children since the day I sent him a text with one simple message, “Hello daddy”.


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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. 

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?!

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