My view on dating for MDUK Trailblazers

My latest blog piece for Muscular Dystrophy UK Trailblazers:

“I’ve learnt that life is not defined by your relationship status and you don’t need a partner to be happy. It doesn’t hurt to keep an eye out though, does it!”

On Dating Diaries Day 2, we hear from Carrie Aimes who talks about why it’s okay to be single.

This blog forms part of Trailblazers Dating Diaries, which looks to lift the lid on dating and relationships when having a disability.

I’m not at present in a relationship and that’s fine, that’s okay. I’ve never actively searched for a partner – dating sites in particular just aren’t for me. In fact, dating isn’t for me if I’m honest. Pretty socially awkward at the best of times, the whole dating thing feels far too daunting a prospect. It just seems so forced and unnatural. Of course it serves its purpose and is a means to an end. But knowing myself as I do I think I would just fail miserably!

A fairly solitary character, I like my own space, I like being able to do as I please, when I please. And I most definitely couldn’t bear to share my bed, it’s my haven!

As is the case for many with muscular dystrophy, much of my time is lost to frequent and prolonged bouts of respiratory illness and fatigue, which doesn’t exactly lend itself to dating or a cohabitative relationship.

I live with my parents in their home which is not exactly the dream for a 28 year-old woman. So privacy and finding time for myself is enough of an issue without adding another person to the mix.

Yes it’s the norm for those my age to be settled in relationships or even married, as most of my friends are. Perhaps my choice to remain single for the time being (and it is a choice) is selfish. But why not be selfish. This is my life and right now I’m content with things as they are. Relationships are hard work, they require you to compromise and invest your time and energy. At present, I’m just not willing to share myself with anyone.

This isn’t to say I’m not open to the possibility of meeting someone spontaneously, as I have found tends to be the best way. But if it doesn’t, I’m totally cool with that. I’ve learnt that life is not defined by your relationship status and you don’t need a partner to be happy. It doesn’t hurt to keep an eye out though, does it!

The [Un]dateables

In February 2017, I wrote a piece for Muscular Dystrophy UK about the Channel4 TV dating show, The Undateables.

Last week, Channel4 aired the final episode of its reality series The Undateables, a dating show for disabled people.

For those who are unfamiliar, individuals with any disability are invited to appear on the show, now in its sixth season.

With the help of dating agencies and personal introduction services, they take part in blind dates, speed dating and match-making in the hope of finding love.

Now, I’ve seen almost every episode since it premiered in 2012, and I have to say I am a fan and supporter.

I appreciate and understand the controversy surrounding the show, particularly within the disabled community, although I personally disagree with much of the negative criticism. For this reason, as someone with a physical disability myself, I would like to offer my point of view.

Firstly, I’d like to point out that all participants have applied of their own free will. Following their appearances, all have reported a positive experience, even those who did not find love as a direct result of the show.

Tammy from series 5 says, “I put myself forward for The Undateables. At no point during filming did I feel like I was being used for entertainment. It’s an entertaining show [but] we all just want to find someone who loves us for us.”

The program has been invaluable and life changing for many, leading to long term relationships, marriage and babies. Furthermore, despite the claims of some, disabled individuals have not been coupled exclusively with other disabled people.

For example, Brent, a young man with tourettes married his able-bodied date Challis.

Steve with Crouzon syndrome married able-bodied Vicky whom he met on Twitter after the show gave him much needed confidence – he remains friends with his able-bodied date from the show.

Then there’s Carolyne from the first series, whose childhood sweetheart left her when she became paralysed following a spinal cord lesion. She later met Dean who is able-bodied. The couple had their first child together in 2014.

These are just a few of the many success stories resulting from the show.

Some critics have called into question the editing, which it can be argued is an issue with any reality TV show. However, taking into consideration the accounts offered by the participants themselves, it would seem to me that great care has been taken to ensure fair and accurate representation.

Again, I personally have no issue with the tone or editing, and have never found it to be exploitative, patronising, sensationalist or insincere. Quite the opposite in fact, I feel The Undateables realistically and positively depicts a range of disabilities, thereby raising awareness and breaking down social barriers and stigma.

James, who has Asperger’s, took part in the show last year. He told ITV’s This Morning, “It [the show] provides a lot of education on a wide range of things, not just conditions… The fact that people will tune in knowing they will learn a bit more, maybe take away the stigma, is a very positive thing. It paints a very positive picture of British audiences.”

The format itself is understandably a contentious issue: why is it not the norm for disabled people to participate in mainstream dating shows such as First Dates, (also a product of Channel4), and ITV’s Take Me Out?

Why must the disabled community be confined to a show exclusively for them? There is no definitive answer, though I would argue that it comes down to choice and demand.

As previously stated, those who partake make the choice to do so. Many have learning disabilities and are supported by family, friends and caregivers, as viewers will know. Therefore, to suggest they are being taken advantage of by producers, which some critics have, I feel implies that these people are not able to form rational decisions and make up their own minds. This is inaccurate and unjustified.

Secondly, the show is now in its sixth year (as of Feb 2017), which proves there is continuing demand from both the viewing public and applicants eager to find love, friendship and companionship.

I have found that questions and accusations such as the aforementioned are often posed, more often than not by those with disabilities. This indicates to me that, in fact, it is not predominantly the able-bodied community who have issues with the show. Yes, you may hear the occasional, ‘bless them’, ‘aw, how sweet’ and ‘good for them’ from able-bodied viewers – how very dare they indeed!

But to conclude that this is a form of ‘inspiration porn’ is in my opinion, vastly overstretching the mark. I take issue with the term ‘inspiration porn’, particularly in relation to The Undateables.

Frankly, even if viewers are in some way inspired by the determination and go-getting attitude of those they see on the show, why is that so awful?

Paralympians are equally as inspiring as Olympians. Yet there are some, particularly in the disabled community, who deem this to be ‘inspiration porn’. That is to say, people draw inspiration from disabled athletes solely due to their disability rather than their sporting achievement, as well as to feel better about their own lives. Personally, I think this is nonsense and insulting to both the able-bodied and disabled.

I cannot speak for the entire viewing public, obviously, but I have watched the show with friends and family over the years, and the feedback has always been one of support and genuine happiness for the love-seekers. Not one person I have spoken to has ever indulged in this so called ‘inspiration porn’ to, as critics say, feel better about themselves. This is the one accusation that frustrates me the most.

Okay, the title… Are Channel4 saying that we, the disabled, are undateable? Put simply, NO!

Producers have themselves stated that the title is to challenge this common misconception within society. Furthermore, as viewers will know, during the opening sequence of each episode, the prefix clearly falls from the word ‘dateables’, thus indicating the contrary.

The show itself is proof that no one is undateable – an eye opener to many viewers who may have previously thought otherwise, or have just never considered the fact that like them, we (the disabled) also need, want and desire love and intimacy.

For one reason or another, there remains a section of society that has never encountered anyone with a disability. Through no fault of their own, they consequently may be ignorant to the needs, desires and feelings of disabled people. I think The Undateables is a great way to introduce this concept to such individuals.

As James with Asperger’s says, the show is successfully removing stigma and raising awareness.

I have an older brother with complex learning disabilities, and so I’m able to draw from his perspective in addition to my own. He has expressed a keen interest to appear on The Undateables, and my family and I would be more than happy for him to do so. Neither of us feel alienated, uncomfortable, ridiculed or patronised by the show. Again, I do appreciate the criticism but for those who bother to watch it with an open mind, I believe you will find it to be well-meaning, sincere and sympathetic.

Those involved have benefitted, it has given others in similar circumstances the confidence to look for love, and it has made society realise that we all have basic human needs and desires, and the right to pursue them.

It’s easy for viewers to criticise on social media, having watched only one episode, or even one at all. But I implore you, ask the participants. Their response says it all, for me anyway. It seems to me the majority of negative critics haven’t actually seen the show and are therefore judging it superficially. It is certainly not a freak show and is not treated as such.

The dating agencies, often run by the parents or relatives of those with disabilities, aim to match clients based on common interests. Disabled people are not matched with others with similar disabilities. To assume so says more about those who think this than anyone involved with The Undateables.

So finally, I urge the harsher critics out there to actually WATCH (preferably more than once!) before judging so narrow-mindedly.

Who knows if Channel4 will commission another series of the popular show. Based on viewing figures, I’m guessing it’s more than likely they will. If so, I’ll certainly be tuning in.

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 30^th 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:

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.

Heated insoles (try ebay!) and shearling insoles will add extra insulation to your existing footwear.

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 is a daily struggle for me, so having to battle 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!

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!

I hope this was helpful! If so, please SHARE

Winter Edit: Part 2 ~ Tips to Stay Well through Winter

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.

My Life with Ullrich Congenital Muscular Dystrophy

Allow me to introduce myself.

I’m Carrie, born in 1988 with the rare, genetically-inherited condition Ullrich congenital muscular dystrophy.

“What’s that?”, you ask. Let me explain…

The congenital part means that it is present from birth. Ullrich is just one subtype of congenital muscular dystrophy. It is also progressive and life-limiting, meaning that symptoms become gradually worse over time.

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

In recent years, I’ve learnt that the number of people, worldwide, living with muscular dystrophy, is far greater than I previously thought. Social media has introduced me to many – some of whom I’m fortunate to call friends.

Through discussions with fellow MD‘ers, I’ve realised that our symptoms and experiences differ significantly.

Despite what some medical professionals believe, there is no definitive check list! For example: ‘everyone with UCMD will be affected by X, Y, Z at this age, and they will not live beyond 40 years old‘. This is simply not the case.

A Brief Introduction to Muscular Dystrophy:

70,000 people with MD in the UK
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 congenital MD. 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.
I didn’t crawl, climb or walk at the normal rate. From around 7 months old, I ‘bum/belly shuffled’. I started to walk at 19 months old. My parents were very much aware that something wasn’t right, and so they pushed for a specialist referral. My mother was told by her GP that she was an “over-reactive mother”!
4 years old – muscle biopsy performed by Dr Helen Roper at Birmingham Heartlands Hospital. I was diagnosed with congenital muscular dystrophy.
My parents were told VERY little – only 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 or stairs.

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 and incredibly distressing for both me and my family.
I became non-ambulant and started to use a powered wheelchair. 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!).
I then stopped wearing the leg splints as I was no longer walking. I could finally wear nice shoes!
From around 11 years of age, I began to wake every morning with debilitating headaches and nausea. Many years later, we learnt that 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 physiotherapy 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 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.
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 have a significant ‘S’ shaped scoliosis (curvature of the spine). This became much more severe following the growth of puberty.
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 very 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 or adjust my position in bed.
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 independently go to the loo. 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, 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 lost the ability to walk 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 remain my primary carers, although I also employ several part-time carers/PAs to assist with personal care throughout the week. This is council funded via Direct Payments.
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 hospital inpatient, I’ve 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 regulated. I no longer suffer from CO2 induced headaches or nausea.
Medication and treatments: BiPAP machine (NIV), Salbutamol inhaler, antibiotics on repeat prescription to treat chest infections, and I have a Nebuliser with saline and Salbutamol nebules to use when ill.
I now experience constant physical exhaustion and extreme fatigue.
Although my condition is progressive and life-limiting, there’s no way to determine exactly when my time is up. No doctor could 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!

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

If, as a child, I had known others living with the same condition as me, perhaps my life could have been enhanced with the benefit of shared knowledge.

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 11^th 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 11^th 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 45^th 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.