Middle of the Night Ramblings

It’s 2am and the 2nd night in a row where I’ve not slept despite being completely exhausted! I can’t get comfortable and it’s still too warm. I do wish Autumn temperatures would kick in soon!

The rain may have finally arrived but it’s still very warm.

Today is a very sad day with the passing of Queen Elizabeth II. Royalist or not, it’s undeniable that she dedicated her life to the service of her country, the commonwealth and the world. She’s seen the world change so much in her 70 year monarchy, she swore in her 15th Prime Minister just yesterday. She’s now reunited with Prince Phillip. RIP Ma’am

Yesterday I taught a resin workshop to 2 friends ho were both convinced they wouldn’t be able to do it. Both were over the moon with their creations. We worked on my new table and I must confess I’m slightly regretting that impulse purchase. It’s just slightly too high to work on comfortably meaning I had to stand for some of it. That has not helped my pain levels. Hopefully hubby can work out a way to lower it a couple of inches for me.

We finally managed to get daughter 1 to clean her bedroom today. She’s 22 but mentally is more like 15, being on the spectrum. Finally the last resort threat of “tidy it up properly or we will bin the lot” got through and she actually did a good and fairly thorough job. She’s a bit of a hoarder and has huge amounts of ‘junk’ for want of a better word. Now none of us except son 2 are obsessively tidy people but there’s a limit to what even I can stand. I hate having an untidy lounge for example. Tidiness never lasts long as there’s 5 of us and we’re constantly decorating something or sorting boxes or labelling parcels etc. Its one of my biggest frustrations of being disabled, that I have to rely on other people to do things like hoovering and rarely being able to finish a job myself. I’m also incredibly impatient and want everything done instantly, this is not a good combination when pain and exhaustion put things out of your control.

Well I guess I should attempt to get some sleep. I have a hospital appointment later today and am hoping my parents will be visiting from Portsmouth xx

End of the Holidays

Well we are into the last week of the summer holidays and daughter 2 returns to school for her final year on Friday. Admittedly, it’s far easier with just one returning than it used to be with 4! We still need to organise school shoes and grab the last bits of stationery required for year 11, but far harder will be getting her back into a regular sleep pattern again having been up most nights watching movies til 2am.

I have to say I’m finding it a bit weird this year. I’ve always been torn between the need for some peace and routine again and wanting to spend a few more weeks with my brood. Usually by now though the arguments and sniping at each other are at fever pitch and separation is definitely needed. This year there has been sniping recently occasionally but it’s blown over quickly, thankfully. It’s going to be very odd when she finishes this year and starts college, an end to 22Type of schooling in one form or another.

I’m in a lot of pain today and have an osteopath appointment and a doctors appointment. I had to chase up some referrals and get new ones made, no fun but my GP is great and very thorough.

Today I want to share with you what I’ve been up to lately. The best technique I have for combating pain is distraction and I distract myself with craft. Craft is my happy place, my safe place, I absolutely love it and I love sharing it with others.

My first love was card making, which I very rarely get a chance to do these days. But my second love was painting and creating personalised gifts. Coming up with new lines every year is challenging but it’s all part of the fun. These personalised Christmas reindeer are fabulous to paint and make an ideal addition to those traditional decorations that come out year after year.

Personalised reindeer £15 each

I divide my craft activities into 2 categories work and fun, but to be fair, they’re both fun and I love them equally. It’s just that every now and then I like to make something just for the sake of creating something pretty. Over the last week or so I’ve needed to indulge this and I even videoed the process (get me, next I’ll have a YouTube channel and be on TikTok 🤣🤣). The film moves very quickly, I haven’t got to grips with how to adjust the speed yet, but I’ll get there. So here’s a short (very short) video for you.

Here’s another little one I did too. Anyone get the 42 reference? Any Hitchhikers Guide To The Galaxy fans out there?

My most recent love and one I’m pretty much consumed by at present s resin work. I discovered this fascinating and therapeutic art form through daughter 2 who’s been using it for quite a while. Intrigued by the process and loving her creations I had a go a have totally fallen in love with it. To the point that I’m now teaching resin classes and daughter 2 refuses to do it anymore as she says I’ve stolen her thunder – ooops! I like resin for several reasons, you can’t fully predict the outcome so there’s very little fear of it going wrong. Plus the fact that I can only make what I have space to dry and so it forces me to work limited hours and I get to rest properly. When I’m painting it’s not unusual for me to do 10-12 hours without a proper break. Not good for me at all but I hate leaving a job half done!

A table I did yesterday
Another table from yesterday
Based on the new photographs of Jupiter
An abstract A1 size piece trying out foam board as a base.

Also in the last couple of weeks I’ve made these beautiful steer skulls, incidentally one of my favourite olifantjie kits of all time to paint.

This one sold straight away 🤩

So that’s what I’ve been up to this week. I have someone coming for a resin class this evening so I ought to set up so I can rest beforehand. Take care, see you next week, all being well xx

Long Time No Write….

Well hello there. Yes it’s been rather a long time since my last post and there’s been 1 or 2 major events happen in that time.

The storms of life always subside eventually xx

9 days after my last post in 2020 I woke feeling odd, as if I was very drunk, (now, I may like the occasional g&t but drunk at 8am is not my style). To cut a very long and boring story a bit shorter, after laying collapsed and naked on my bedroom floor for 2 hours, my husband found me and called an ambulance. Although I couldn’t speak I did make him understand that he had better put some clothes on me before they arrived as no one needs to be greeted with that when they’re working 🤣🤣! It transpired I had had a massive stroke! Multiple CT scans, blue lighted to Queen’s hospital London, a Thrombectomy and I was discharged a week later, after making a 98% recovery. I still have weakness on my right side, my leg tires quickly and I drop things a lot, but other than that according to the hospital I am a walking miracle!

It has taken a long time to process what happened to me, the trauma that it caused my family and I spent more than a year thinking of it every day, worrying if if would happen again, making sure my phone is with me constantly ( I had left it on the bed when it happened and couldn’t get to it). Being without a phone would completely stress me out and I was constantly making sure it was charged and the ringer on. I spent a lot of time why I survived and what was my purpose in life, surely I was destined to do something amazing because I had survived. Eventually I have come to accept that there is no great plan for me, I am here just to keep doing what I’ve always done – see something good in every day, always look for the silver lining, to love and support everyone I know, to spread smiles and hope. To live my life to the absolute fullest, share my passion for creating with new people, support those in in the disability support groups I’m in and just to be me.

In other health news ( I thought I’d do this post by subject, rather than chronologically). My fibromyalgia has been getting steadily worse and I have discovered that I also have hEDS, chondromalacia patella, a particular type of bursitis in my hips/thighs and residual central focal disc protrusion with bilateral nerve compression – was that enough of a mouthful for you?? It was me! Ooh, I forgot some yes, I’ve also got TMJD (temporomandibular joint dysfunction 🤦🏻‍♀️ and a neurological problem yet to be diagnosed, but I think that may be stroke related). Last week I went to see a consultant to discuss having a spinal cord stimulator fitted to try and alleviate some of my back pain so I might be able to walk properly again, but sadly it’s not be. I’m a perfect candidate if weren’t for my stroke which has left me needing blood thinners for life. Apparently the risk of bleeding and paralysis is just too high. That dammed stroke, for which there was no explanation, has a lot to answer for. I have now exhausted all treatment possibilities and will just need to increase my doses of opiates unfortunately. That really was gut wrenching news. I had pinned so much on that potential treatment. I had gone in ready to fight my case, done my research and in moments my hopes were gone. That has been a tough one to get my head around but I’m getting there. I’m no worse off but there are days when the reality of living with all these conditions takes it’s toll and it’s hard to maintain a sunny disposition. My advice to you if you ever feel this way is don’t try to maintain it! Let the feelings come, examine them, accept them and move on when you’re ready.

In more positive news, Tom our eldest has moved out of home. He has a job that he started almost a year ago, which he absolutely loves. We found him a flat near enough to work so he can walk there and with a lot of support and help he is living independently. That is something we never thought would be possible. There have been and will always be bumps in that road but I’m so proud of him.

Son number 2 passed his A Levels with the grades he expected. He’s undecided abut what to do wit his life, so he’s currently looking for a job and learning to drive. Personally I had hoped he’d go to university and that’s still a future possibility. I think because I was expected to go to uni and didn’t, I would’ve liked him to go. I have no regrets though that I didn’t, as the path I’ve trodden has led me to the wonderful life I lead. I do go back as an adult in 2018 but the stroke put paid to that too ( starting to see just how big a deal that stroke was!).

Daughter 1 K is still plodding along and daughter 2 is about to enter her final year at school. She is dyslexic but doesn’t let it hold her back and these holidays have included lots of revision and reading new books.

It’s been a busy few for me. I’ve stared teaching beginners resin workshops. It seems everyone is keen to give resin a go at the moment and I’m completely booked up! I’m trying to be very sensible about and limiting myself to 2/3 classes a week with rest days in between. Invariably when I’ve taught a class in the morning I spend the afternoon sleeping as it just saps all my energy, but I love sharing my passion for creating with new people. It’s their joy when they’ve created something they didn’t think they could do, it’s infectious. Resin is very therapeutic and it’s not physically taxing which makes it ideal for me.

One of mini resin seascapes

Saturday night I was at a family party and last night Robin and I went to see Coldplay at Wembley Stadium, both of which in my wheelchair. Today I’m exhausted an in a huge amount of pain. I knew this would be the result and I planned for it (no craft or teaching today, just rest, rest and rest). If you’ve read the few posts on this blog then you may have gathered that I’m all about living my life. I refuse to sacrifice things that bring me joy like teaching, concerts and theatre trips because of the very painful and exhausting pay back! If I tried to keep my pain at a minimum everyday I would never leave the sofa and that’s not a life I can live with. I try to plan and pace activities around rest and recuperation, I make the most of the access schemes and the accessible activities available to me. It’s not easy and it doesn’t always work (I didn’t go to the George Ezra concert I’ve been looking forward to for months because it was just too hot and the price was too high for me and without the love and support of my husband and family I’d struggle to do anything, but I only have 1 life and I choose to live it.

See you next time, hopefully next week xx

Birthday Parties, Adrenaline & Fibromyalgia

Afternoon all, how are you this Monday? This may develop into a lengthy post, so feel free to scroll on lol. 😉
Today for me, I’ve been reflecting on how sometimes we can be carried along on sheer adrenaline and focus – at least for a while. Yesterday was our youngest child’s 13th birthday, an important milestone for youngsters, especially for girls (or least it’s been that way in this house). Clearly the current situation was going to mean that things would need rethinking from original plans, to ensure she had the special day she deserved. Now far from filling me with dread or regret it meant I could throw myself into planning an event she would love. I’m admit it, I’m a planner and organiser and with a tiny amount of self pride I say that attention to the tiny details are what I thrive on.
Aside from family Christmas’ etc this was the biggest thing I’ve been solely responsible for organising in few years now, ( I am making it sound quite grand aren’t I? For good reason, in my head it was, but in reality it’s just 1 teens birthday party, not the royal garden party lol). And I’m planning this in the middle of 1 of the most aggressive and progressive flares I’ve ever had.
For about 3*4 weeks I’ve been sourcing and making decorations, personalising matching sets of pjs, champagne flutes and more. Tracking down special gifts and organising cakes – you get the idea. All the while thinking to myself, oh I think I’m ok today and actually being in less pain (supposedly) but in reality getting to grips with my wheelchair because I literally can’t make it even halfway down my road, even on crutches now. I stopped struggling to come to terms with that and put everything into yesterday. 1 or 2 of you in this group have known me a long time and have seen 1st hand that I really do put everything into stuff like this – as I’m sure most, if not all of you would do – I’m not trying to say I’m a saint 😇.
Anyway, long story short-er-ish 😂 after 2 days of setting up our garden to reflect a summer festival- my physical contribution being mostly fluffing paper pom-poms, making selfie frames and photo props and putting up banners nothing I thought to strenuous.
It was determination and adrenaline that carried me through all this right up until about 7pm last night. The pain wasn’t obvious – was it there or not? I think it was, in fact I know it was, masked by that adrenaline ( is it friend or foe I wonder??)
Today as I crawled to the sofa, where I have stayed apart from collapsing when trying to get to the 🚽 , I realised that the adrenaline has worn off and this is my reality. It will probably take me as much time to recover from this, as the time it took to organise. All to make a day super special for someone else. As I asked myself if it was worth it, I laughed because we all know the answer to that – of course it was!! It will always be worth it to see 1 of my family as happy as she was yesterday. BUT will I do things quite the same way again?? Well that’s a question I can’t truthfully answer, because of who I am, but right now, exhausted and in a great deal of pain, I’m inclined to think that I might just have to rethink how I do in the future, be it pacing myself better or delegating, things are going to have to change. Adrenaline may mask the pain and carry you through for a while, but it’s not a way you can live your life for long.
Xxxx❤️

Not me or my house 🤣🤣 I wish!

Learning to love myself

I’ve been back and forth wondering which topic to cover first, but I’m grabbing the bull by the horns and talking about body image and me.

I’ve never been what you’d call thin since I passed through puberty. My love of food and dislike of intense exercise have never made me a fan of serious dieting. I guess like a lot of folks, sometimes I’m happy as I am, sometimes not being able to wear the clothes I love seriously gets me down.

I am a true believer that genetics play a huge part in how you naturally look. For example I look like my mum facially and have a very similar body size, whilst my sister is tall and slim, just like my Dad (who, to prove my point, is 1 of 8 and only 1 has a different body type to the others).

This is me and my mum, taken around 6 years ago and is me at my heaviest. You can see the similarity.

This is me and my sister on my 40th birthday. I wanted a masked ball, and you can see how squeezed into that dress I am, despite ordering sizes bigger.

It’s only been in the last year that I have really started to not just accept myself as I am, but love myself as I am. Yes, I would still like to shed a few pounds, but that has nothing to do with appearance and everything to do with health.

I know exactly when the change in my perspective started. It started with an unexpected comment from my husband. I’ve always known he loves me as I am and he finds me attractive. But when you don’t feel attractive to yourself, the words of others do little to make you feel better.

Standing naked in front of our full length mirror one morning, I was on the verge of tears when Robin said something to me that was all the more moving because it’s not the sort of thing he usually says, “Shall I tell you what I see? I see a body that has given me 4 amazing children, a body that I want to climb into bed next to for the rest of my life and a body that fights battles with pain every single day”.

Now, needless to say, that caused copious amounts of tears and blubbing (me, not him lol). I thought about those words over and over and it slowly dawned on me how right he is. 4 pregnancies, 1 c-section (responsible for what I call the caesarean over hang), along with almost 25 years of assorted medications and scars from various procedures have given me the body I have (ok, I admit cake and crisps also played a part).

Fighting a daily battle with Fibromyalgia, arthritis, digestive disorders, a poorly back with metalwork in it and whatever else seems to be thrown at me fairly regularly, all have an effect on what I see in the mirror. But there is a flip side to that, one that is so important to acknowledge and even more important to embrace – Your body is fighting, its fighting against the pain becoming anymore debilitating, it’s giving you the ability to get out of bed each day, even if you have to do it slowly and carefully. Your lungs are breathing, your heart beating, your mind thinking.

So I may never be the dress size I’d like, but I’m loved, I’m desired and I have a body that keeps on fighting. My wobbly bits and over hangs, just remind me of how far we’ve come, they remind me that being squishy means I’m soft to cuddle up with. The boobs that almost reach my waist remind me that I gave 4 children the best start I could give them. My scars remind me that I’m strong enough to deal with whatever is thrown at me. And the hour glass shape to my figure (yes it’s there under everything, I’m just not getting it out to prove it lol) reminds me I’m a woman and there is someone who will always want to get into bed next to me.

If you struggle to love your body, please just take a few minutes to acknowledge just what that amazing body of yours deals with and overcomes, every single day!

Xxxx

Top pic me now, below a couple of years ago with the love of my life xxx

The supporting cast…..

So, you’ve already briefly met me – Harry Potter nerd, hates bananas, you remember yes.

The other half trying to steer this family, the calm to my crazy, the 1 without whom I truly would’ve lost the plot by now, is my amazing husband Robin. Classic car enthusiast, kind, long suffering, banana loving, dyslexic, can fix anything, real ale fan.

Then we have son 1, T, who’s 21, also banana hating, minecraft loving, documentary enjoying, DAMP Syndrome suffering (more on that another day, it deserves a post all to itself), malt loaf loving and fab tea making.

Daughter 1, K, 19. Fierce, strong, imaginative, Autism spectrum, raspberry loving, marzipan hating, Lion King fan, self harmer.

Son 2 Et, PS4 playing, pizza loving, typical teen, hates mess, fab kitchen cleaning, film lover.

Daughter 2, Ev, artistic, food consuming, dyslexic, animal loving, ironing hating, forgetful, anxiety suffering but always smiling.

And the next act in the circus is……

Well hello there. We are the Moore family. I’m Rachael, mum, wife, art student, crazy Harry Potter fan, banana hating, chronic illness sufferer and beginner blogger.

My reason for starting this? Well, we are just your ordinary family, but ordinary families are dealing with some extraordinary things on a daily basis. This is not meant to be another parenting blog, in fact the kids probably won’t feature in half of it (I like to pretend I don’t have any occasionally for the sake of my sanity lol) and it certainly isn’t a sympathy begging, woe is me, the end of the world is nigh type of blog. I hope you’ll laugh, you might cry (fingers crossed it’s not because my writing is bad) but hopefully you’ll find support, ideas and the realisation that whatever your life, it’s perfectly normal to you.

I’ll pop back another day and introduce the rest of the madhouse xxx