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!

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

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 a day many would rather forget. 11/11/1918 a day we must never forget.

Today is 11th November 2016, Armistice Day. 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.

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. Yet this week we have entered a period of unprecedented political turmoil; a time of uncertainty, instability and division.

Of course I’m (begrudgingly) referring to the newly elected 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 both female and disabled myself, I feel compelled to comment since he has caused offence to all minority groups throughout his 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 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 come together 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.

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, look to the past, learn from the past, and move forward with love, positivity, unity and the best intentions. A decision has been made, Trump will be the President. We can’t and shouldn’t fight this decision. We need to offer support, goodwill and compassion to all. One day at a time.

My Open Letter to Personal Care Assistants | Muscular Dystrophy Trailblazers

All my life I’ve required care, whether it be from family members, friends or paid employees. For over a decade now I have been hiring assistants to help me with an array of tasks, including personal care. I have always chosen to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.

I’m in the fortunate position of having been gifted the best family I could ever hope for. I do appreciate though, that not everyone has the invaluable support of relatives to rely on. For these individuals their only option is to pay others, often strangers, to assist with their needs. Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.

For others though, in times of desperation, they have no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.

Over the years I’ve had several carers (or personal assistants) – whichever label you prefer. For the most part, I have found them through friends, associates or word of mouth.

Several months back my longest serving employee had to leave for personal reasons. It came as quite a shock but couldn’t be helped. She worked for me for eight years and had seen me at my worst and most vulnerable. She is a good friend close to my age, whom I trusted and relied on, and so the news of her resignation was somewhat distressing. Thankfully she was good enough to stay until her position had been filled, which she was under no obligation to do. Nevertheless, I was abruptly faced with the immediate and unavoidable task of advertising for her replacement.

I was under no illusion that finding someone who could and would meet my needs was going to be a simple endeavour. It certainly was not. I’ve been casually told social workers, who carry out my annual Needs Assessment, to simply advertise and hire, as and when needed. As if I’ll be flooded by pools of applicants to choose from. Then again, I guess these social workers have never had to find people willing to drag them from their pit every morning and get them ready for the day ahead. Trust me it’s no easy undertaking when job seekers are sadly too often put off to discover that personal care does in fact mean personal care!

I placed ad’s everywhere I could think of; online and locally. After several weeks of limited interest, I arranged interviews with each candidate in the hope that at least one would be suitable. Most were let downs, failing to turn up without notice or changing their mind after showing initial enthusiasm. My expectations were raised only to be shattered.

I was surprised by the casual disregard and lack of consideration from some of the applicants. I spent whole days at home waiting for interviewees to arrive, as if I have nothing better to do. Is it really that difficult to send a text message or make a quick call to say you cannot attend for whatever reason?

Time was ongoing and I was increasingly aware that I would have to find someone – anyone – as soon as possible. I live rurally in a town populated by less than 10,000 and so inevitably I wasn’t getting as much interest as I might if I lived in a city. This was an incredibly tense and stressful time for me.

Although my carer had said she would remain with me until a replacement could be found, I knew it was too much to expect her to stay as long as it was taking. I couldn’t be without the care I needed to live my life – to simply exist. Yet at the same time I couldn’t find anyone to provide this care. I was facing an almost impossible challenge.

In the end it was once again through friends of friends and frankly sheer luck that I found someone to take on the essential role. I won’t lie, it’s been a difficult transition and my daily routine has had to adapt. But, several months on, things seem to be coming together and all the initial doubts and struggles have been ironed out. I do still worry about the future prospect of having to go through the whole hiring process once again. It’s an unenviable task but one that is an essential and unavoidable part of life for those of us with a disability.

I realise it’s difficult for those applying for positions as PAs to empathise with our unusual and complex situation. If you’ve never needed care yourself it’s understandably difficult to grasp the necessity and importance of the role of caregiver.

For this reason, I have written an open letter to carers and prospective PCAs (personal care assistants). It has been published on the Muscular Dystrophy Trailblazers website. If you’re interested to read the edited version of my letter, click here.


Open letter to carers

On behalf of all of us who require personal or social care, I invite anyone considering taking on the role of personal assistant to think carefully about what it really means before you do apply.

Firstly, this is not a choice for us. We’re not, for example, hiring a cleaner because we’re too busy or too lazy to clean our own homes. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.

As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are in effect placing our lives in your hands when you take on the vital role of personal carer.

Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.

We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification. Please do bear in mind that just because we are disabled, like you we have lives too, so don’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance. As you would with any potential employer, be professional and courteous.

If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this can happen but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.

Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.

Are you trustworthy, reliable, willing and able? Ask yourself: are you entering this area of work for the right reasons? Your role will involve a range of tasks and you will be responsible for the safety and wellbeing of your potentially vulnerable employer. So, if your attitude to care work is casual and indifferent, then this is most definitely not the job for you!

Flu jab: Get yours today!

Well it’s upon us again; flu season is here. Every year my parents, brothers, carers and I have the Influenza shot 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. The common cold will hit me hard and can rapidly develop and deteriorate. 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. So 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 had to fight recurrent chest infections, several bouts of pneumonia, pleurisy and a large pneumothorax requiring a chest drain. Many long, drawn-out days have been spent in hospital trying to overcome serious complications that resulted from a simple, everyday virus.

For this reason, I implore and encourage you 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 contains a small dose of the inactive virus which triggers antibodies, which within two weeks will guard you if and when you’re exposed.

Like all viruses, Influenza strains change annually which is why it is essential to ensure you are vaccinated every year. I visited my local pharmacy, without appointment, a few weeks ago to get mine. If you haven’t already, don’t delay, go and get yours NOW!

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