What’s in my bag: UCMD edition

The ‘what’s in my bag’ post is a popular one amongst many bloggers. I guess it’s our innate curiosity that makes us so eager to know the personal contents of a complete strangers bag. Nosey beggars we are!

Nevertheless, most people carry around the same few items on a day-to-day basis, right?

– Wallet, phone, keys…

But what does a wheelchair user routinely carry with them?

Here’s an insight into what I, a young woman with muscular dystrophy, take with me in my bag.

  1. Ventolin Salbutamol inhaler with Haleraid – I keep one at home but also ensure I have one of these in my bag at all times. I find these inhalers difficult to use without the Haleraid device, which I highly recommend for those with small or weak hands.
  2. In addition to the usual house and car keys, I have a Radar key which provides access to over 9000 accessible toilets throughout the UK.
  3. Empty bottle – if you read my blog, you may be aware that I have a suprapubic catheter. So, when out and about, I have found it a good idea to keep an empty bottle with me. I’m sure I need not explain why…
  4. If using public toilets, it’s good practice to carry a small bottle of hand sanitiser. I get mine from Primark as they’re super cheap and portable. I’m also susceptible to coughs and colds so this helps me to avoid community acquired viruses.
  5. Wet wipes – I prefer a smaller bag as I’m rather petite. So I usually leave a packet of wet wipes in the car. These things are invaluable and versatile, particularly for us girls!                                                                After indulging in fast food, using public transport and toilets, refuelling the car, for cleaning a dusty wheelchair, or simply freshening up on hot summer days. Wet wipes are a must.
  6. Tissues – you can guarantee the one day I don’t put a tissue in my bag is when I’ll desperately need one.
  7. It’s now June and around this time of year I suffer with hay fever. As you may know if you read this previous post, I’m also allergic to horses. I therefore keep some antihistamines to hand, should I run into a horse. As you do.                                                                                                           You can buy Loratadine tablets for less than a pound in some shops. There’s no point spending more for branded versions, they all do the same job. However, if for any reason you struggle with tablets, I recommend Boots Hayfever Relief Instant-melts. They are quite pricey but as the name suggests, they melt easily on the tongue and leave no nasty aftertaste. And they work!
  8. Chewable multivitamins – I try to stay as healthy as possible by taking a daily multivitamin supplement. I have a big pot of tablets at home but on the go, I prefer to pop a sachet of chewy multivitamins in my bag. They’re much more lightweight than pills and you don’t need a drink to take them.
  9. Drink – usually Lucozade (although they have recently cut the sugar content by half resulting in a distinct change in flavour. Damn them!) I’m not in general a fan of energy drinks, nor do I have a sweet tooth. But this stuff got me through Uni. As I get older, I become weaker and more fatigued due to my muscular dystrophy.                                                     It’s not the healthiest thing in the world I know, but I’m pretty clean living otherwise. Lucozade helps fight exhaustion. Lucozade is my friend!
  10. Straws – I can still lift cups, glasses and bottles to drink from, but a straw just makes life so much easier, especially if you’re en-route and jigging about in the back of a wheelchair accessible vehicle! I often swipe them in bulk from the cinema or good old Maccie D’s.
  11. Ensure compact milkshake – if I’m out all day or travelling for several hours, I’ll take one of these with me for convenience. They’re easy to pop in your bag and one small bottle provides 300 calories. Some people complain about the taste. I’m not going to lie and tell you they’re delicious, but they’re certainly not offensive. And for those of you who struggle to keep your weight up and achieve a nutritionally complete diet, these do the job.
  12. Chewing gum – apart from the obvious purpose of maintaining minty fresh breath, gum really helps to relieve bloating. Like many with scoliosis, I struggle to eat a lot as there’s little room for expanse. But, sometimes my eyes are larger than my belly and I force myself to eat more than my body will allow. I then feel uncomfortable and even tight-chested. Chewing encourages a faster rate of digestion, thereby easing this discomfort.                                                                                            Furthermore, I’m not a particularly anxious person but I have noticed that chewing gum helps somewhat. Is this just me?
  13. Phone – everyone carries a mobile phone with them nowadays, but for me it’s essential. If I’m out in my car and it breaks down or there’s an accident, I can call someone. Similarly, if there’s a fault, malfunction or damage to my wheelchair, I would be stranded without my phone.
  14. Cards and cash – well, obviously. I wouldn’t get far without any money. I always have some cash with me for parking as well as ID since I look about twelve. I was born in the 80s, I swear.
  15. Blue badge – This lives in the car and it really is a huge help for us disabled folk. I’m out, here and there in my car most days and ever in search of accessible parking spaces. I couldn’t be without it.                                    

20 Questions Tag!

We Brits have endured turbulent times of late. So, in an attempt to inject a little light relief into proceedings, I’ve devised my own 20 questions tag.

I’ll kick things off and tag a few fellow bloggers who will then (hopefully) answer the same 20 questions. Not the height of excitement folks, I know. But it’s a brief respite from the continual political talk going on right now.

Ok, here goes…

1. Morning or evening person?
Evening. Always have been, even as a kid. I just don’t function in the morning.

2. Night in or night out?
These days (because I’m so old) I prefer a cosy night in with a good film and good food. The weather here in England is generally crap so I really have to force myself to leave the house when invited out on a cold, rainy evening.

3. Lots of friends or a few close friends?
A few friends. My closest circle of friends are those I have known for almost 20 years. It’s best to keep them sweet, they know too much!

4. Time to yourself or time spent with others?
As sad as it may seem, I actually love my own company, especially as I still live with my parents. It’s not as though I have a home of my own. So, I appreciate time to myself all the more. I’ve always been able to occupy myself. My folks often say I would happily play alone as a tot. Take that as you will…

5. Holiday at home or abroad?
Abroad, definitely. I rarely have the opportunity to travel so when I can, I prefer to go abroad, mainly to escape the British weather.

6. Countryside, seaside or city?
Seaside. I live in central England so I’m several hours drive from the nearest coast. It’s a rarely seen sight for me. I always wanted a house overlooking the sea. I just love everything about it.

7. Hot climate or cold climate?
Hot! I have muscular dystrophy and poor circulation. Thus I really feel the cold. I always feel so much better in every sense when in a warmer climate.

8. Books or films?
I’m a big film buff. Admittedly I watch a lot of films. Box sets seem to be the ‘in thing’ at the moment. I’ve been told I should get stuck into Game of Thrones and Stranger Things, among others. I may do at some point. I did watch Fargo season 2. That was decent. But I just don’t have the patience for TV shows. I like to settle down at night and watch a good film. 2-hours and you’re done.

9. Rice or pasta?
Rice. I like pasta but it’s much stodgier. Due to my MD, scoliosis and respiratory decline, I have limited space for food as it is. Plus I find rice more versatile.

10. Tea or coffee or..?
I like the smell of coffee but hate the taste. I’ll drink tea but I’m not a huge fan. I live on Lucozade. Bad I know. But it literally got me through Uni. Can’t believe they’ve changed the recipe! Bloody sugar tax. It really doesn’t taste the same anymore.

11. Cook, takeaway or eat out?
Ooh, I enjoy all three. Depends how I’m feeling I guess. I rarely have a takeaway so when I do it’s a treat. It’s nice to eat out with family or friends. And I do like to cook because it means I’m involved and can eat whatever I want. I’m a bit of a bish, bash, bosh type. I don’t like to be restricted by a recipe.

12. Formal or casual?
Casual, all the way. I don’t do formal!

13. Dogs or cats?
I love both and have always had cats and dogs. I’ve never known life without a pet. If I had to choose I would probably say I prefer dogs. Generally more loyal I think.

14. Play it safe or be daring?
I wish I could say I’m a spontaneous type, but unfortunately MD doesn’t lend itself to such a lifestyle. I hate routine and monotony. I’m as daring as I can be.

15. Idealist or realist?
Realist. I have to be. My whole existence requires consideration, planning and organisation. It’s nice to dream every now and then but dreaming tends to lead to disappointment.

16. Lead or follow?
I guess I’m a bit of both, depending on the context. I prefer to follow as I don’t like responsibility or being held accountable. I’d rather go with the flow. But I am an employer -reluctantly – since I hire my own PA’s. Therefore, this calls for a degree of leadership.

17. Work or play?
Play. Life’s far too short!

18. Lennon or McCartney?
Lennon. Sorry Paul.

19. Love or money?
Love, no doubt. Cliché maybe. Money helps, of course. I wouldn’t turn it down. But at the end of the day, when the shit hits the fan, all you want is your loved ones around you. All the money in the world won’t cure my MD. But love makes life worth living.

20. Share your problems or keep them to yourself?
I’m often accused of being secretive, guarded and evasive. I do bottle things up. I know “it’s good to talk”, and all that. But I just don’t find talking about my problems helps. I don’t like people to know when I’m unhappy or ill or struggling.
I’ll be honest, I find it difficult sharing so much about myself on my blog. I hold a lot back. I’m not a fan of social media and it took me months and months to finally submit. Months and months of friends pushing me to give it a go. I still require the odd kick up the ass to persist.


I hope you enjoyed this post. Let me know what you think.

I tag:

Uncanny Vivek
SimplyEmma

 

 

Suprapubic Catheters (SPC)

Have you ever looked at a disabled person and wondered how they go to the loo?

I am physically disabled (Ullrich congenital muscular dystrophy) and have, in fact, asked this question myself many times over the years. As a wheelchair-user unable to weight-bear, toileting was always my biggest obstacle. Believe me, I’ve tried every method, technique and contraption available. But if you can’t stand or transfer, HOW do you do it?

Most wheelchair-users require the assistance of at least one other person to hoist, transfer or manually lift them. From experience, I can tell you this is time consuming and challenging enough when in your own, fully adapted, accessible home. When out and about, going to the loo can be an absolute nightmare!

Public facilities for disabled people are vastly inadequate. Bathrooms are barely big enough to accommodate a manual wheelchair, let alone a powered wheelchair plus carers and the necessary room to maneuver. They are often used as storage cupboards, occupied by cumbersome baby-changing equipment and the litter covered floors are filthy. This lack of consideration and basic adaptions in disabled toilets means that many are forced to lay on these dirty floors in order to be dressed and undressed. It is degrading and wholly undignified.


In October 2011, after careful consideration, I elected to undergo medically unnecessary surgery (on the NHS) to insert a suprapubic catheter (SPC).

I have always had full sensation and an otherwise healthy, fully-functioning bladder. Despite a lifetime spent severely restricting fluid intake and holding the need to urinate, I thankfully never suffered from urinary tract infections. I was not physically incontinent, rather socially or environmentally incontinent, since public toilets fail to meet my practical needs.


Following many requests for information and advice, I have written about my personal experience with a suprapubic catheter. Please refer to the document below, which you are welcome to download and print as required.

*Disclaimer* This is my experience only, and in no way represents that of any other person(s). 

Suprapubic Catheters – My Experience

Please feel free to ask questions and leave comments! 

Excuses, excuses: why there’s no good reason to not vote

“I haven’t got time”

“I forgot”

“I didn’t register”

“I was on holiday”

“I didn’t feel well”

“Something came up, so I couldn’t get to the polling station”

“I couldn’t be bothered”

“I’ve got better things to do”

“My vote won’t make any difference”

“who cares?”

“I’m not interested in politics”

“I don’t like any of the leaders so what’s the point?”

“It’s raining! I’m not going out in the rain just to vote!”

“They’re all corrupt anyway”

“The polling station is inaccessible!”

So many excuses I’ve heard over the years. As someone who has never missed an opportunity to vote, I am always frustrated when others fail to. Regardless of your circumstances, there really is NO EXCUSE!

I live semi-rurally and my local polling station – an old building with many steps – is not wheelchair accessible. Now I’m all for inclusivity and accessibility. But, this has never been a cause for concern as it doesn’t prevent me from casting my vote. Years ago I registered online (an easy process) for postal voting. I don’t even need to leave the house to have my say!

Like it or not, politics does affect each and every one of us. Each and every ballot paper counts. Ensure you make your voice heard by marking your choice with an X this Thursday, June 8th!

Failing to vote is failing to care.

Take advantage of your democratic right.

A United Kingdom

Rather than the usual Friday ‘I miss… I’m thankful’ post, I decided this week to reflect on current issues including the General Election and terrorism in the UK. Don’t worry, I’ll try not to get too deep & dreary!

Trying times

It’s fair to say that the past few weeks have been rather tumultuous here in the UK. Election fever has reached its peak as we edge ever closer to the public vote, to be held on June 8th. It’s very much a two-horse race with Labour’s Jeremy Corbyn facing off against Conservative Prime Minister Theresa May.

Now I don’t want to delve into party politics or voice my own predilection. While I do think it’s important that everyone who can vote does so, I don’t feel it necessary to impart my views or those of any other. At the end of the day, we are all individuals with diverse circumstances and priorities. Therefore, I haven’t and won’t be publically advocating any particular party. It is for you to decide who to vote for. All I will say is, please ensure you do make time to cast your vote. After all, people died to allow us the right to have our say. And frankly, if you don’t vote, you really can’t complain.

Manchester

Late last Monday, 22nd May, a terrorist attack occurred at the Manchester Arena. A 22-year-old suicide bomber took the lives of 22 individuals, including children. 116 others were injured, some critically.

This follows the recent incident in London’s Westminster, when on 22nd March, 4 were killed and 50 more injured by a lone assailant.

Such events are sadly becoming more commonplace in the UK, and we are increasingly told to remain vigilant.

It’s a distressing prospect which affects us all, whether directly involved or not. I was in utter disbelief on hearing of the Manchester bombing, particularly because it took place at a Pop concert and targeted children. What goes through the mind of the person who carried out such a horrific and devastating act is just inconceivable.

The future generation

I am soon to be an aunt, and so the impact on me was greater for this reason. I wonder, in what kind of environment will my new niece or nephew grow up? Will they learn to accept terrorism as the norm? Will they one day be targeted?

We see it on the News every day: ISIS-led atrocities in Iraq and Syria, militant barbarism, explosions, executions and so on. We associate this with the Middle East, not with the Western world and definitely not with us. Not you and me.

But the sad truth is, we are involved, we are a target, and we are fighting a war with terrorism. But what I am thankful for and proud of, is the way in which we respond to attacks made against us.

Stand together, united

Any attack against our nation is an attack against us as individuals and against our freedom. It is personal. We all feel it. As a result, we all pull together in trying times.

Reports of the tireless work of emergency service staff, the charity of taxi drivers, help from the homeless and those from afar offering aid on their day off work. These heart-warming stories unite us. People from all walks of life join forces to repair and rebuild. This is something that the terrorists can never take from us. We are strong and defiant and we refuse to live in fear.

I’m thankful

So, in-keeping with my usual Friday themed posts, I’d like to conclude by saying that I am thankful to be living in the UK. I am thankful to be living in a diverse yet united nation. I am thankful that here in England I do not live every day in fear or peril, unlike many unfortunate people in the world. I am thankful for the strength, courage, pride and positivity of Britons. Furthermore, I am thankful for the emergency services and for the NHS. Truly, where would we be without them?!