Tag Archives: nhs

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