Tag Archives: nhs

There’s a politician who seems to be very happy to use his platform as a member of parliament to share his very conservative points of views. One of his latest comments was about the compassionate and uplifting view British foodbanks gave. Mr Rees-Mogg’s opinion

I can see merit in what he says. Foodbanks are non-profit, donation based enterprises. The fact that the British people continue to pop some beans or a box of teabags into the food bin after a shop when their budget is stretched to it’s thinnest is incredibly heartwarming. Every penny counts and still we try to make sure those who don’t have a slice of bread or the bashed up can of beans that stays on the shelf for it’s entire 4 year shelf life, get given food to see them through the next few days.

That doesn’t mean that it’s okay that Mr Rees Mogg says what he does. He is part of a government which seems to be hell bent on pulling the rug out from under the feet of the nation, a government who year after year reduces the real term money in the budget of nearly every family within the UK. It will never be okay that he talks about how inspiring the great British public is whilst he sits in parliament and almost consistently votes for the poor to get poorer and the rich to get richer. Voting history of Mr Rees-Mogg

I hold my hands up. The Mr works extremely hard but with my disability we are increasingly reliant upon the benefits system. This isn’t ideal. It was never meant to be this way and every time we make headway something happens to kick us back down. We have never been at the point of need so bad that we have visited a food bank, and it is largely thanks to family and wonderful friends that this is the case. Our budget is able to stretch further having to not buy a whole new wardrobe as a child grows, because of the generosity of pre-loved sofas and kitchen tables, because our friends are in similar positions themselves and we have all recognised that it is through the generosity of friends, family, and even strangers, that our world keeps turning.

With every passing bedtime I breathe a sigh of relief. We made it through another day and no one went to bed hungry, they might even have managed to have dessert too. I’ll ignore the hole in my shoes, the lack of a coat that fits, I’ll cut my hair myself again and continue to cut the rest of the families too. I don’t even mind that this is the state of our life. We feel blessed everyday to be able to love our beautiful children and our ever growing circle of nieces and nephews. We are healthy(ish) and (mostly) happy but of course there are ways we could be happier.

We could reduce our significant debts for example. We are trying to count every penny and be held accountable for our “luxury” purchases like new stacker shelves for the understairs pantry and a hot chocolate on the go. Having so many appointments at hospitals means I do spend whilst out and about and I should get better organised but I’m also tight so settle for hospital hot drinks or a Maccy Ds hot chocolate with the hope of saving enough stickers to get my free drink! No fancy Costa drinks with marshmallows for me any time soon.

The Mr is trying too. He’ll buy a pile of microwave dinners and a bunch of bananas for the week – cycling backpacks aren’t very useful for taking in a homemade lunch – and he is quite adept at spotting special offers on crisps which makes him a fairly happy chappy.

I know we aren’t alone in a budgeting stresses and I recognise that there are families out there who think we are extremely fortunate and, I guess, in lots of ways we are. Mr Rees Mogg might not have any clue about the majority of people and how we live. I’d happily show him how it works for our family but I doubt he’ll be slumming it in South London any time soon. The frustration will continue and the families struggling now will also be on this treadmill in a year, five years, ten years time. It is the fallout from austerity and the penny pinching from the poorest whilst shoving the pounds towards those at the top. We live in a democracy but so many don’t know how or just won’t vote and it is so frustrating. The people have decided that this government is fit to serve the people but it only has those that already have in their sights. The have-nots will continue to pinch every penny they see, just like us, and our Prime Minister and her cronies will fill each others’ bank accounts ready to see out their days never needing handouts or suffering from NHS funding cuts and the continuing fall in student nurses and teachers because you can earn more on the till of your local supermarket than ensuring the educational and health needs of the next generation. 

How did we end up in this mess? And is there any way we can get through the next decade without watching our children going to school filthy and hungry? I am fairly certain Mr Jacob Rees Mogg doesn’t have a plan for the foodbank users of the 21st Century.  

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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

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

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

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