I miss… I’m thankful #5

I miss… midnight snacks and being able to sit myself up in my electric bed to have a drink during the night. Since starting nocturnal NIV (non invasive ventilation) this small pleasure has become practically impossible since I have a mask bound tightly to my face. Drinking is possible with a nasal mask but eating is very difficult as there is an increased risk of aspiration.

I’m thankful… I can eat whatever I want and am still able to feed myself. Unlike many with muscular dystrophy, I don’t have a PEG feeding tube and so all my calories and nutrition comes from the food I put in my mouth. Although I get very full on small quantities of food, I do like to go out for meals with family and friends.

I miss… I’m thankful #4

I miss… sitting in cars on a car seat, particularly the front seat, rather than having to travel in my wheelchair. These days I have to travel in my electric wheelchair at the rear of my Motability vehicle, as transferring is just too difficult.

I’m thankful… for my wheelchair accessible vehicle which allows me to get out and about with ease. I no longer need to be manually lifted in and out of cars. It makes life so much less stressful.

I miss… I’m thankful #3

I miss… playing my clarinet, which I can no longer play due to my declining respiratory function (I was pretty good too!)

I’m thankful… that having now sold my clarinet, someone out there is learning to play and getting as much enjoyment out of it as I did. Plus I’ll always have the knowledge of that achievement. I LOVE music and listen to some form every single day, though I’ve never been a natural musician myself. So to have learnt to play an instrument to a good standard is something I’m proud of.

I miss… I’m thankful #2

I miss bumping down the stairs on my bum as an infant. ‘Bum shuffling’ as my mom calls it kept me pretty mobile around the house as a kid.

I’m thankful… I can still sit on the sofa if I want to and don’t have to remain in my wheelchair all day. It’s good to move around in order to remain as flexible, and as comfortable as possible, even if like me it means being manually lifted.

Learn more about me…

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

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

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

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

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

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

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

So, here is the first entry…

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

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

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.

Read more of her great blog here.

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!

[Un]dateables

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

Here is my unedited version…

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 though it time to put forward 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 with tourettes married his able-bodied date Challis, and 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 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, personally I 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. I could go on and on with this point, but I fear I may lose you (assuming I haven’t already).

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 might have previously thought otherwise or have just never considered the fact that like them, we too want love. 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 Undateablesand 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 or none of the episodes. 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 merely bundled 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 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…