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!

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, a urology consultant, I’ve chased GPs on the telephone, attended a pre-op 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 girl of only 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. Mom (yes, I say Mom rather than Mum. The latter seems too… posh?!) 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!

To end more positively, Id like 2 say thankyou 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 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.

My life with Ullrich congenital muscular dystrophy

Back in October I promised that at a later date I would get to the ins and outs of how my condition affects me. I think it’s about time I do just that in order for you to learn more about me and the impact UCMD has on me personally.

Well, I have a rare, degenerative, genetically-inherited condition called Ullrich congenital muscular dystrophy. The congenital part means that it’s present from birth. UCMD is just one form of muscular dystrophy, of which there are many. In fact, Ullrich CMD is in itself only one subtype of congenital muscular dystrophy.

I must emphasise that what follows is my personal experience.

There are, according to the muscular dystrophy UK website, over 60 forms of MD and its severity is wide-ranging.

In recent years I have learnt that the come number of sufferers, worldwide, is much greater than I previously thought. I’m aware that my use of the word ‘suffer’will cause controversy as many do live happy, fulfilled, adventurous lives despite their disability. Nevertheless, it is a debilitating disability that I have most certainly found sufferable. Life without UCMD would doubtless be immeasurably less stressful, physically and mentally.

Having read accounts from others with MD I’ve realised that we are all individuals and therefore our experiences differ significantly. Despite what some medical professionals believe, there is no definable check list. For instance: “everyone with UCMD will be affected by ‘X’ at ‘X’ age and they will not live beyond 40.” No, we’re not robots and we do not all operate, function and malfunction in the same way.


A brief introduction to muscular dystrophy:

  • 70,000 people with MD in the UK
  • Very rare, affects 1-1000 people
  • Genetically inherited muscle wasting condition
  • Progressive
  • There is currently no cure for MD
  • There are many forms of MD – over 60
  • The most commonly recognised is Duchenne MD
  • UCMD is a type of CMD. It affects c.50% of the 400-500 people with CMD
  • UCMD is caused by the lack of a vital protein needed to support muscle cells.

 My experience:

  • Born with dislocated hips and ‘floppiness’. At 2 weeks of age I was put in plaster for 12 weeks to realign my hips. 20161130_211543
  • I didn’t crawl, climb or walk at the normal rate. As a baby and even into infancy I ‘bum/belly shuffled’ from around 7 months old. I only started to walk at 19 months old. My parents were very much aware that something was wrong and so they pushed for a specialist referral. My mother was told by her GP that she was an “over-reactive mother”. What an asshole!
  • 4 years old – muscle biopsy performed by Dr Helen Roper at Birmingham Heartlands Hospital. I was diagnosed with congenital muscular dystrophy. 20161130_213022
  • My parents were told very little; just that I would experience overall muscle weakness but mental ability would not be impaired. Doctors didn’t know if or how my condition would progress, nor if it would stabilise following puberty. They didn’t know if I would ever need to use wheelchair.
  • I wore specially made leg splints as a child enabling me to walk short distances, around the house and school.
  • For longer distances I used a ‘buggy’ or manual wheelchair.
  • I have never been able to walk up or down steps.

  • At age 7, I had my tendons released in both feet and ankles as they were turned inwards. Following the operation my feet were held in position in plaster casts for 6 weeks.
  • I stopped walking quite abruptly at age 10. At the time this was unexpected, shocking and incredibly distressing for both me and my family.
  • I became non-ambulant and started to use a powered wheelchair full time. We raised the money for my Jazzy Pride electric wheelchair through sponsored events, charitable donations, fundraisers and public appeals; my story was put in newspapers and school newsletters (this was pre-social media folks!). It’s amazing how generous people – strangers – can be.
  • I then stopped wearing the leg splints as I was no longer walking. I could finally wear nice shoes, yeah! A silver lining after all.
  • From around 11 years of age I began to wake every morning with debilitating headaches and nausea. This was due to a nocturnal build up of carbon dioxide in my body, having failed to effectively expire the waste gas during sleep.
  • From the age of 4, I had 30-60 minutes of physiotherapy once a week at school. This mostly involved stretches to maintain what flexibility I had, but it came to an end when I turned 14. Literally one week my physiotherapist was there, and without a word of warning, the next week she wasn’t. I was then told that if I wanted to continue with my physio, it would have to be carried out by my parents or a carer.
  • Following a second muscle biopsy at around the age of 18, my diagnosis was narrowed down to Ullrich congenital muscular dystrophy. At the time this really didn’t mean anything to me. I didn’t learn anything new and nothing changed. It wasn’t a case of; we’ve defined it as UCMD which means we can give you this treatment. There is no cure for muscular dystrophy. And so I just carried on with my life as I had been.20161130_212939
  • I attended mainstream school before moving on to a Sixth Form College where I completed A-Levels in Fine Art, English Language and History. I then attended a local university, commuting everyday via taxi. After three years I achieved a BA (Hons) degree in Art and English Literature.
  • I’ve always had scoliosis (curvature of the spine), although the severity progressed significantly after I became non-ambulant.
  • At around the age of 9 my parents and I were told I would need a spinal fusion to correct the scoliosis and prevent any further curvature. Again we were given little information, no case study to refer to and little time to make a decision. I do remember vividly how the seriousness of the operation was emphasised. In particular, “you could die” stuck in my infant mind. In the end, we decided not to go ahead with the spinal fusion.
  • Scoliosis affects posture, balance, respiratory function and causes pain, discomfort, pressure sores and asymmetry of the torso.
  • It is very difficult to find clothes that fit because of my lumbar deformity.
  • Because of the scoliosis my torso is squashed and so too are my organs. This means that I become full, bloated and breathless after small quantities of food.
  • I have contractures of the joints & tightening of the tendons in my ankles, knees, hips, elbows and wrists.
  • Due to the weakness in my neck I’m unable to lift my head from a pillow when lying flat.
  • I cannot sit myself up from a lying down position or support my own weight at all.
  • I’m unable to transfer independently, and at only 5.5 stone (77lbs) I’m usually lifted manually or otherwise hoisted.
  • I can’t turn myself in bed. However, I bought a satin bed sheet and wear silky pyjamas which allow me to slide myself from side to side. This means I don’t have to rely on someone to reposition me throughout the night.
  • Because my movement is limited and I cannot exercise, I have poor circulation and very cold hands and feet. Corpse feet as I refer to them.
  • It is difficult for me to regulate my body temperature.
  • October 2011 – I opted to have a suprapubic catheter for practical reasons. I have no functional continence issues. Purely due to the severity of my contractures, muscle weakness and inability to transfer, there’s no other way for me to empty my bladder independently. My SPC (suprapubic catheter) means that I no longer need the assistance of anyone else to carry out this personal task. Boys, don’t get me started – you don’t know how lucky you are!
  • I currently live with my parents in their house. I have a ground floor bedroom and ensuite bathroom extension which was built when I was 12 years old. My parents received a grant towards the cost but were means-assessed and so they had to extend their mortgage in order to fund the excess. Prior to that I had a bedroom upstairs which I accessed via a stairlift. Having stopped walking at age 10, struggling up and down stairs and on and off the stairlift became impractical, hence the need for a ground floor extension.
  • My parents are my primary carers, although I employ someone a minimum of 5 mornings per week to get me out of bed, washed, dressed and ready for the day. I also employ another personal assistant who transports me in my Motability wheelchair accessible vehicle (WAV) to social activities and appointments. Occasionally my parents need a break from home, and from me I’m sure. When they’re away, my carer attends in the mornings as usual and returns in the evenings to cook dinner. She will then sleepover in the spare bedroom upstairs in case I need anything during the night and for safety reasons. After all I’d be pretty screwed if the house set alight while I was alone in bed. I’m afraid I would have to just lie there and fry. Good job I like the heat eh!
  • As I have aged, my declining respiratory function has become the main cause for concern. Chest infections have become worse and more serious as a result.
  • A frequent inpatient, I have had pneumonia more than five times, pleurisy twice and a spontaneous pneumothorax (collapsed lung) which required a chest drain.
  • Following a particularly bad bout of pneumonia in March 2012, I commenced nocturnal non-invasive ventilation. I use a Resmed Stellar 150 biPAP machine with the Resmed Swift FX Nano nasal mask.
  • NIV (non-invasive ventilation) ensures that oxygen and carbon dioxide levels are normalised. I no longer suffer from associated headaches or nausea.
  • Medication and treatments: BiPAP machine (NIV), Salbutamol inhaler, I have antibiotics on repeat prescription to treat a chest infection, and I have a Nebuliser with saline and Salbutamol nebules which I use when I am ill.
  • I now find at 28 years old, I am physically exhausted all day every day. Fatigue and overall weakness is the norm, and it is getting worse.
  • Although my condition is progressive and life limiting, there’s no way to determine exactly when my time is up. No doctor in the land can predict what age I can expect to live to. As such, I prefer to put this to the back of my mind and try to live as ‘normal’ a life as possible. Whatever normal is!carrie-aimes-recent_with-permission




If you or someone you know is affected by muscular dystrophy, in particular UCMD, perhaps reading my account may be of some use. I firmly believe that sharing our experiences, and offering advice and support is invaluable. If, as a child, I had known others living with the same condition, maybe my life could have been enhanced with the benefit of shared knowledge and wisdom.

Doctors, though essential, cannot tell you how it feels or what day to day life is like. This is why I really appreciate MD-associated Facebook groups and the MDUK forum. People can talk candidly with others who understand exactly what they’re going through.


If you have any questions at all, feel free to ask.

And, if you liked this blog post, please do share!

Thank you