Learn more about me…

Since I’m fairly new to the blogging scene, I thought it would be beneficial for all if you knew a little more about me and my everyday life.

As someone with a disability, the inevitable question arises now and again: how does it (in my case muscular dystrophy) affect you?

There’s no easy answer to this question, particularly since it’s a progressive condition, meaning that symptoms worsen over time. Furthermore, there are many different types of muscular dystrophy, all of which vary considerably. As in life, no two people are ever the same.

To give you some insight I have decided to offer regular snippets of my experience with Ullrich congenital muscular dystrophy.

I had considered writing a detailed piece about the everyday challenges I face and how I have adapted over the years. But in the end I felt that might be a little, well, boring for you guys. Plus, this open diary (if you will), can be ongoing, allowing those who are interested to see how my condition continues to develop.

Perhaps this will help others, particularly those younger than I as well as parents of children with muscular dystrophy. Perhaps…

For the first week I will upload daily to give you an idea of where I’m going with this! Thereafter, I’ll upload once a week.

So, here is the first entry…

I miss… snuggling up in bed without having to wear a mask to breathe. As anyone out there who relies on NIV will know, it’s an incredibly difficult thing to adapt to. The mask is (for me anyway) extremely uncomfortable and needs regular adjusting throughout the night to avoid sores and the escape of air. I have always struggled to get to sleep without the addition of a mask tightly strapped to my face. It is of course something I wish I didn’t have to endure but, it serves its purpose. Quite literally – adapt or die!

I’m thankful… I can still breathe well enough to manage without daytime NIV (non invasive ventilation). I sincerely hope I never come to rely on my BiPAP machine for daytime support as well as nocturnal ventilation. However, I’m realistic and so am aware this could happen in the future. Therefore, I try my best to make the most of my days as they are – mask free. As cliché as it sounds, your life really can change in a day. So make every day count!

Lost time

I’m back- finally! As you may know I was struck down with a particularly bad lower respiratory infection during the New Year period, and was consequently ill for over a month. Until a few days ago I was unable to leave my home throughout that time. So unfortunately, 2017 has not begun how I had hoped or expected.

Anyone with muscular dystrophy will know a cold is never just a cold for us. I dread the British winters and the circulation of unavoidable viruses it brings. For me, sneezing and a sore throat inevitably and rapidly develops into a full-blown chest infection. Bring on the 24/7 NIV (non-invasive ventilator), regular nebulisation, antibiotics and inhalers.

At times I’ve had no choice but to admit defeat and blue-light it to hospital. But stubborn as I am, if I think I can cope with the resources I have within my home, that is where I choose to remain.

I have noticed over the past few years the duration of my illnesses have become increasingly prolonged. I missed the entire summer of 2015 to a chest infection which lead to pleurisy. From the end of May to the end of July, I was stuck in my living-room, sat in the armchair night and day with my trusty vent keeping me going. Several GPs and physiotherapists attended but despite their best efforts, none could offer any productive help or advice – nothing I wasn’t doing or didn’t already know.

I was exhausted mentally and physically, but despite my ongoing struggle I couldn’t help but feel guilty for putting my parents, whom I live with, through the experience. They have no choice but to watch helplessly and with desperation as their youngest child battles with her failing body. “What can I do?”, they ask. But there’s nothing they can do. I always tell them I’ll be fine, it’s just a matter of time.

Having thoroughly depressed you with that cheery and fairly pointless update, I’ll bring this particular post to a close. Now finally on the mend, I intend to resume where I left off with the blogging. ‘Oh goodie!’, I sense you cry with enthusiasm. I realise I’m more than likely rambling away to myself here but writing serves to make me feel purposeful, perhaps even contributory in some way.

January has for me been lost forever and I can’t get that time back. It’s so frustrating being unable to do… anything! Even just going out for a ride in the car is a major highlight for me right now. When all you see day after day is the same four walls from the same seat in the corner of the room, cabin fever soon sets in.

Today, seeing the first daffodils of spring starting to emerge filled me with much needed optimism. There will doubtless be future episodes of ill health to contend with. But for now I plan to recharge, re-energise and refuel. Bring it on!

Moving forward | Goodbye 2016, Hello 2017

Hey folks, I hope you’ve all had an amazing Christmas and New Year. If not merry, I hope it was at least peaceful.

I thought I’d start 2017 on a positive note by reflecting on the past year and all the things I’m thankful for. Now I’ll be honest, I’m not a naturally optimistic person. I can be a right grumpy bint at times. But I’m trying to, as they say; look on the bright side of life. After all, negativity only leads to bitterness and however wronged you may feel at times, believe me life is far too short for bitterness.

2016 has been a fairly uneventful year for me. There have been ups and downs but for the most part it’s been significantly better than previous years. It’s the little, seemingly insignificant things that I’m most grateful for.

To put it bluntly, my twisted body is a bit of a bastard and does not allow me the support I need to function fully. However, it’s dainty and lightweight, making me easy to chuck around, which I am regularly. For this I am fortunate as my petite stature allows greater and easier mobility. Had I followed my 6’4” older brother for height, life would undoubtedly have been far more difficult practically speaking.

Apart from a cold in June just before my week-long holiday to Spain, I haven’t been worryingly ill since summer 2015. During that period I spent over 8 weeks sat in an armchair in the living room, unable to go to bed or lie down due to a severe chest infection and subsequent pleurisy. I was a mess! From the beginning of May to the end of July I didn’t leave the house once, except for a trip to the hospital for tests. But let’s not dwell on that upsetting and difficult time…

The trip to Salou in Spain, was a much needed retreat from the monotony of everyday life. I holidayed with my parents, which obviously isn’t the dream, but fortunately we have a great relationship and so we muddled along nicely. It’s rare that I travel since I find it so difficult with the severity of my disability; therefore the sun, sea and sand was all the more appreciated.

Although we have our inevitable squabbles, my family are the best I could wish for. However, through talking with others in a similar position, I’m increasingly aware of those with disabilities who do not have the support of relatives. Consequently, they may feel lonely, isolated and unloved. Without family members to rely on, they are dependent on paid assistants to provide their personal care. Though I do employ two PAs myself, my parents remain for now at least my primary caregivers. A small, tight-knit family, we laugh a lot and perhaps most importantly we are comfortable in each other’s company. It’s only when I consider how different life could have been had I been born to different parents, that I realise just how lucky I am.

In spring 2016 I hired a new PA after my carer of eight years had to leave for personal reasons. As many of you will empathise, the recruitment process can be a stressful one. Adapting to yet another stranger providing your personal care is uncomfortable and unnatural but thankfully for me this particular transition was relatively trouble free. I won’t lie, it took a while to adjust and establish a new routine that worked for us both, but we get on well and she fits into our household effortlessly.

On the topic of family, ours would not be complete without our aging black Labrador, Millie. I have never known life without a pet. At one point we had four dogs and two cats living with us. Yes it was a little chaotic at times but always the best kind of chaos. I wouldn’t have changed it for the world.

Millie turned thirteen on Friday 30th December and is now depicting all the signs of senescence. Currently our only pet, she has been with us from birth since her mother, a golden Labrador, also lived with us. A great comfort especially in times of distress and frustration, I will be distraught when we do lose her. I’m therefore extremely thankful that she is still with us, as she is an invaluable source of company and happiness.

Finally, I’d like to acknowledge my blog. It’s a relatively new venture, having only begun in October. But to my surprise and delight, I’m already reaping so many rewards. I have been introduced to people from all over the world who empathise with my thoughts, feelings and experiences regarding life with muscular dystrophy. I have also received positive feedback from complete strangers which has thoroughly boosted my confidence and determination.

I’ll admit I was at first somewhat reluctant to attempt blogging and spent several months debating whether I should. It was only the persistent encouragement from friends that convinced me to finally give it a go. And so it is to all my friends, both old and new, that I owe my final thanks of the year. I hope these alliances will continue to strengthen throughout 2017 and that I may meet more likeminded individuals. Here’s to the New Year…

Signing off for Christmas

Hey folks,

Well, Christmas Day is now only a week away. Blimey, where has the time gone? I always think that the count down to Christmas is far more exciting than the day itself which can sometimes be a bit of an anti-climax. So this year I’m determined to savour every minute and get as much out of the festivities as I possibly can.

As always my holiday will be spent at home with family, of which there are few of us. My two older brothers will be here on Christmas Eve so I daresay most of our time will be spent watching films (The Snowman, anyone?) and making ourselves sick on Quality Street. Christmas Day will then be a small affair, just the five of us – my parents, my oldest brother, Nan and me. Oh, and the dog! These days we have dinner after the Queen’s speech (obligatory viewing for the elders) and then open our presents.

All my gifts are bought and wrapped and scattered about the house, hidden in various hiding places. All I need to do is remember where they are. 😕 Inevitably at least one stray present makes an appearance days after the event.

Our Christmas tree is up…

…and our homemade wreath adorns our front door. I hope it’s appreciated since I burnt my bloody fingers on the glue gun whilst making it. Do not underestimate the power of the glue gun, people!

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And here’s the completed wreath

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What do you reckon? Not bad for a first effort if I do say so myself. I’m just hoping we don’t have any torrential rain or high winds as I can imagine mini frosted apples and slices of orange dropping off and battering visitors in the face as they approach. Not the best festive welcome but let’s see what happens, eh.

Film recommendations: 

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There are so many great Christmas films to get you in the festive mood (there are also some pretty shocking ones out there too). But where do you start? Some people want comedy, others have kids to consider and therefore need a family friendly option. Some want tradition and then there are those who would like to see something more thoughtful and dramatic.

A few of my favourites include Home Alone (1990), The Muppet Christmas Carol (1992), Elf (2003), and The Family Stone (2005).

I’ve tried to cater for everyone here although obviously we all have our own go-to Christmas movies. For those of you who haven’t seen any of my recommendations, maybe start with Elf which is a charming and cleverly witty family film about Buddy, an elf played by the irrepressible Will Ferrell. A good choice to keep the kids entertained now that school has ended, this non-stop comedy is both sweet and slapstick at times. I’m 28 and I still love this one!

My next choice is another hugely popular family friendly festive film about a young boy mistakenly left home alone when his family fly to Paris for the holidays. Macaulay Culkin was at his prime here, offering a highly entertaining and endearing performance that more than matched his established co-stars (Catherine O’Hara, John Heard and Goodfellas Joe Pesci). With plenty of comedy, capers and action, Home Alone will excite and enchant both young and old.

Who hasn’t seen A Muppet Christmas Carol, seriously? What is there to say about this one. Charles Dickens classic story is invigorated and enhanced by the Muppets unique blend of humour and musicality. With the addition of England’s very own Michael Caine who is perfectly cast as Ebenezer Scrooge, this is a must see come Christmas Eve.

My final suggestion is less well known though possibly my personal favourite of the four mentioned. The Family Stone is a heartfelt comedy-drama about a modern-day ecclectic American family who reunite for the festive period. One for the grown ups, Id advise settling down with a glass of wine to watch this one before bed. I’m not overly sentimental but admittedly this movie always makes me shed a few tears. But don’t be put off, there’s also plenty of laugh out loud moments throughout. The ‘Christmas message’ is, in my opinion, subtly yet effectively delivered. Frankly I could watch this at any time of year since it’s simply a good drama about the trials and tribulations of family life.


Well, that’s all for now folks. I’ll be back in the new year with part 2 of my winter edit, and for those of you who’re interested I’ll post about my experience with a suprapubic catheter (I haven’t forgotten).

Wherever you are and whatever your plans, I wish you all a very happy and healthy Christmas and New Year!

The winter edit: Part 1

5 tips to keep warm this winter

Winter is well and truly here and so too is the frosty weather. British winters can be long, dark and unforgiving.

To help you make the most of the season ahead, I bring you part 1 of my winter edit – advice, tips and tricks to ward off the chill.


1. Chilblains:

Because I am unable to weight bear, I suffer from poor circulation making my feet permanently cold. I have what can only be described as corpse feet – purple and puffy! I have tried all sorts of remedies over the years to treat recurrent chilblains but I’ve found the best to be Gehwol Fusskraft Red cream (available on Amazon). I slather it on generously before putting on a pair of thick woolly socks, and find my feet are subtly but noticeably warmed and chilblains are kept at bay.

  • A good alternative to the Gehwol Fusskraft Red cream is the Pink Peppermint foot lotion by Lush, which works similarly to stimulate circulation. If going out on a cold day I’ll sometimes rub this into my hands to fend off frosty fingers.
  • In terms of footwear, you can’t beat (in my humble opinion) a pair of shearling lined boots *ahem, Ugg dupes* They may not be the height of sophistication, but they do the job and they’re ridiculously comfortable. I can imagine all the guys out there are thinking this is one for the ladies, but there is a good selection of shearling lined winter boots out there for men too.

2. Layering:

We all know it’s best to layer clothing when cold. However, this is not so easy to do when you’re a wheelchair user. Getting dressed at all is a daily battle for me so having to struggle with more than one top fills me with dread. So my advice put simply; if you can layer, do. If like me you can’t, keep reading…

I live in leggings as they’re stretchy and comfortable. You can buy leggings everywhere and anywhere these days but I favour Marks and Spencer heatgen thermals. There are socks, tights, vests, long sleeved tops and of course the leggings I love. Again if you’re able to, I recommend wearing these items under your usual attire for added insulation. But they’re ideal to wear alone too. M&S also feature a men’s thermal underwear range.

A great alternative to M&S is the Uniqlo Heattech range for men, women and children. This extensive selection is it is competitively priced, practical and fashionable. Definitely check this one out!

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  • I swear by scarves. They’re so easy to throw around to protect against the winter chill. They come in so many fabrics, sizes, colours and styles. Invest in a thick woollen scarf big enough to wrap around your body like a poncho or use as a blanket over your legs. I sometimes do this if I’m home alone as I can’t manage sleeves myself.
  • Wear a woollen hat when going out in cold weather as heat escapes from our heads.
  • Gloves aren’t just for outdoors. If you suffer from cold hands, try wearing a fingerless pair when indoors which allow you the freedom to continue with your daily tasks. If it’s a particularly frosty day and I need to go out, I will layer woolly gloves over a fingerless pair. You could also purchase some USB heated gloves online.

  • Throughout the coldest months, ensure you use several bed sheets as this traps heat in far better than having one thick blanket. It’s also much easier to turn and reposition yourself with a few thinner cotton sheets over you than one heavy blanket. *I’ve mentioned it before but for those of you who struggle with turning in bed, I highly recommend investing in a satin fitted sheet.

3. Fabric:

When trying to keep warm it’s worth considering where you are and what you’re doing as this will determine which fabrics to opt for.

  • Natural fibres such as wool, cotton and silk are more insulating since they trap heat. So lightweight silky pyjamas will not only keep you snug at night, they will also help you manoeuvre more easily. Cotton is hypoallergenic, breathable and good for layering but not advisable in wet weather as it is also highly absorbent. Wool too absorbs moisture though due to its structure, water cannot enter the interior fibre. Therefore, even when soaking wet the air pockets inside the woollen fibres prevent you from losing heat. 100% wool is best as blends are less insulating.
  • The synthetic fabric polyester is good when out on a windy day. It’s durable, lightweight and can be made to any thickness. A polyester coat or jacket is a must. And why not snuggle up in bed with a polyester fleece mattress topper, available from Amazon.

4. Food:

  • Swap your morning cereal for warming porridge oats. Add a little cinnamon as it stimulates circulation thereby raising body temperature. Cinnamon spice is also full of antioxidants and anti-inflammatory properties which will protect you from winter viruses.

  • Opt for soup over sandwiches. Include iron rich foods, garlic, onions, spices and orange vegetables such as carrots, sweet potato and squash.
  • Whole grains, nuts and nut butters are great insulating snacks.
  • The dark days and cold weather can make us lethargic. Many of us lack the energy to cook after a busy day. So to prepare for the week ahead, make yourself plenty of warming hearty meals like stews, broths, casserole and chilli, then freeze. When you then come home in the evening, all you need do is reheat and enjoy. You’ll be warmed through in no time.
  • Hot drinks are a winter essential. I drink a lot of herbal teas, especially lemon and ginger as these ingredients are great for flushing out the system and warding off coughs and colds. When on a long journey take a flask of hot coffee or tea with you to stay warm and hydrated.

5. Home heating:

It’s important to maintain a warm and consistent temperature in your home throughout the winter. Exposing yourself to extreme and varied temperatures can leave you vulnerable to ill health and infection. Government guidelines advise heating our living rooms to 21C (70F).

Most of us now have central heating which can even be controlled from our mobile phones. My family home is primarily heated by a wood burner which warms the whole house. However, I cannot prepare and light the fire myself due to my disability. I therefore store a fan heater in my bedroom which is simply operated by the flick of a switch. There are many different electric heaters now on the market. Here’s a budget option and a higher end option for you.

You could also pre-heat your bed with an electric blanket or a hot water bottle so that it’s nice and toasty for you to get into at night.

Honourable mentions:

  • Invest in a high tog duvet for frost nights.
  • For a quick fix, blast yourself with the hairdryer for instant heat
  • Heating pads and microwaveable heat pack
  • Reusable hand gel warmers (I have these)
  • Microwaveable slippers/USB foot warmer
  • Check out the complete care shop for a variety of warming aids
  • Enjoy a cosy night in front of the fire with a milky hot chocolate – my favourite is Galaxy or Aero – and a big bowl of homemade cinnamon popcorn!

Life Update & Thanks

Hey folks, hope you’re all happy & well. Sorry to begin on a negative note. I won’t sugar coat – the past couple of weeks for me have been pretty shitty. In that time I’ve seen a urology nurse specialist, a continence nurse specialist, and a urology consultant. I’ve chased GPs on the telephone, attended a pre-operative assessment, and on Friday I had surgery under general anaesthetic. So, todays message will be brief as I’m not feeling entirely human right now. No photos either I’m afraid, as I currently look like the Crypt Keeper, and trust me no one wants to see that!

It has also been a sad time due to a family bereavement; two days before my birthday, a relative, aged just 15, died from neurofibromatosis type 1. This is a very rare and little-known condition. My knowledge of it is limited, and so I refer you to this website if you wish to learn more.

Furthermore, two days after my birthday is the anniversary of my Nans death. So, all things considered, sadly I have not yet felt inclined to enter into the festive spirit. But I will now make the effort to try. Mum has already decorated our home both inside and out with lights and wreaths. Yesterday she and Dad put the tree up – a real one as always. You can’t beat a real tree (IMO)!

To end more positively, I’d like to say thank you for the overwhelming response to my last post: My life with Ullrich congenital muscular dystrophy. I hoped, but honestly never expected anyone to read it, let alone relate and respond to it. The feedback I have received, particularly on Facebook, has been so kind and supportive. Your response has given me the much needed confidence to continue blogging. So, I thank you all, sincerely.

M.I.A

Hey there folks, hope you’re all well. Just a quick check-in today to apologise for my recent absence. I had intended to upload a number of blog posts over the past fortnight, but as often happens, life has taken over of late.

But fear not readers (of which there are thousands, I’m sure). I have a list of topics ready to enthrall you with over the coming months. I can sense your overwhelming excitement already!

On the off there is someone out there reading this, dare I ask if there’s anything inparticular you’d like me to discuss here on my blog? I’m open to all suggestions.

Signing off for now. Be back soon guys & gals…

Armistice Day | Time to remember and reflect…

9/11/2016 ~ US Election Result: Trump triumphs over Clinton. A day many would rather forget!

11/11/1918 ~ A day we must never forget.


Today is 11th November 2016 ~ Armistice Day

It has now been 98 years since the brave soldiers of The Great War lay down their arms for the last time along the western front. Almost a century past, but now and always we will remember and give thanks for their selflessness, heroism and sacrifice.

On the 11th November 1918 the guns fell silent, and finally, four long years of fighting came to an end. The Armistice of Compiègne led to six more months of negotiations which resulted in the Treaty of Versailles, effectively concluding the First World War.

Sadly, conflict continues to rage on around the globe, with many lives lost every day to war.

Today, we should all take time to commemorate servicemen and women, past and present. It is our moral duty to show appreciation for all who have fought for our protection, for peace, stability and liberty.


9/11/2016 ~ Trump Triumphs

This week we enter a period of unprecedented political turmoil; a time of uncertainty, instability and division.

Of course, I’m (begrudgingly) referring to the newly elected President of the USA – Donald Trump. I have debated whether or not to acknowledge his recent victory on my blog, since it is such a divisive issue.

However, being a woman with a physical disability, I feel compelled to comment on his offensive attitude towards minority groups throughout his controversial campaign. On a personal note, I find it shocking and unnerving that a bigoted, misogynistic, ableist, racist, xenophobic, ignorant narcissist can acquire such popularity and power!

Although it’s true that Hillary Clinton won the popular vote, Trump is headed to the Whitehouse in January 2017, due to the arguably flawed Electoral College system.

The fact is, Trump achieved marginal wins in several large states, meaning that, like it or not, he will be the 45th President of the United States of America. We must now accept and respect the result and unite in an organised and peaceful manner, in order to move forward with positive intentions.

Violence and disorder has already broken out in America following the news of Trump’s success. People are wreaking havoc, causing damage and fighting each other in angry desperation. The widespread fear and distress is understandable, but nothing positive can be achieved from hostility.


1914 ~ Christmas Eve Ceasefire

Even in times of war, humanity will prevail and divisions can be broken down. The Christmas truce of 1914 demonstrates how opposing forces put aside their differences, if only temporarily.

On Christmas Eve, a ceasefire along the western front saw British and German troops greet each other in no-man’s land to exchange pleasantries, take photos, play football and bury their dead before returning to their trenches.

Armistice Day football match at Dale Barracks between german soldiers and Royal Welsh fusiliers to remember the famous Christmas Day truce between germany and Britain PCH

So, on this, Armistice Day, please look to and learn from the past, and move forward with love, positivity, unity and the best intentions.

A decision has been made, like it or not; Trump will be the President of the United States. We can’t and shouldn’t fight this decision. We need to offer support, goodwill and compassion to all. One day at a time.

Flu Jab: Get Yours Today!

Well, it’s upon us again; Flu season is here. Every year my family and I get the Influenza vaccination, which is free of charge here in the UK, courtesy of the NHS.

For as long as I can remember, I’ve had the Flu jab to protect myself through the harsh winter months. It’s important that not only I am vaccinated, but that those closest to me are too. My immune system is much weaker than average, and my condition makes it considerably more difficult to overcome respiratory infections. For me, a common cold can quickly develop into something much more serious. It’s therefore very important that I am not unnecessarily exposed to the Flu virus.

As I have aged, my declining respiratory function has become the most concerning symptom of my disability. Ullrich congenital muscular dystrophy causes muscle degeneration and scoliosis. Not only are my lungs squashed and unable to expand as they should, the muscles that make them force air in and out are slowly wasting away.

Over the years, I have fought recurrent chest infections, several bouts of pneumonia, pleurisy and an acute pneumothorax (collapsed lung), requiring a chest drain. Many long, drawn-out days have been spent in hospital trying to overcome serious complications resulting from respiratory viruses.

For this reason, I implore and encourage you all to go and get the Flu shot. It takes no time at all and I promise you, it’s completely painless. There are fables floating around that will attempt to make you believe the Flu jab can give you the Flu. This is not the case at all. Yes, the vaccine does contain a small dose of the inactive virus. This triggers antibodies, which within two weeks will protect you, if and when you’re exposed to seasonal Flu.

Like all viruses, there are various strains of Influenza which change annually. For this reason, it is essential to ensure you are vaccinated every year.

I visited my local pharmacy, without appointment, a few weeks ago to get my free vaccination. If you haven’t already, please don’t delay. Go and get yours NOW!

For more information on the Influenza vaccine visit the NHS web page here.

Farewell October

Just a quick post today. As promised here are this years pumpkins. Unlikely to win any awards, granted, but not too shabby I reckon. They’ll do for me anyway.

Not one to put anything to waste, I thought I’d try my hand at making spiced pumpkin soup for the second time. The first and last attempt was a few years back, and so I decided it was about time to give it another go.

All you need to do is dice the pumpkin flesh into small pieces, chuck in a saucepan with a drizzle of oil and reduce down on a medium heat. Once softened, add onion, tomato purée, spices of your choice (no more than half a teaspoon) and a little double cream. Heat through, season to taste and blend for a smooth texture.

Do excuse the ice cream pot folks. This is going home with my brother so that he can warm it up for his supper. What a wonderful sister I am!

As suggested in my previous post, I chose to simply roast the pumpkin seeds for 20 minutes. Served in a snack bowl for a light bite on Halloween night, you can’t go wrong with this easy treat.

Admittedly I’m not looking forward to the dark days and frosty nights that winter will surely bring. The invigorating colours of autumn will be greatly missed, as will the mild temperatures we’ve experienced of late. Nevertheless, embrace it and face it I say, after all it’s headed our way.

Will you be sad to wave goodbye to October, or are you counting down the days to Christmas now that Halloween is almost over for another year?