October means: Dysautonomia Awareness Month

So I've talked about the two more well known things associated with October but today it's time to mention another thing associated with October that is a lot less common knowledge. And will mark the first post of my making the invisible visible series, in which I hope to raise awareness of a number of invisible illnesses. And that is dysautonomia. Have you heard of this? Perhaps some people have. Can you pronounce it? I can't. But despite my struggle in saying it today as part of Dysautonomia Awareness Month I hope to at least ensure a few more people have heard of it and know what it is.

Dysautonomia is a term that means a disorder of the automatic nervous system function. Already sounding confusing? Our automatic nervous system is responsible for telling our bodies to do the things that we do in a way without thinking. Our brains just tell certain thinks to happen and they do, unlike say brushing our teeth where we have to exercise some thought and actually be taught this behaviour. Whereas automatic responses are part of our natural chemistry. So to give you some examples of the automatic nervous system in action; our hearts pumping blood around our bodies, breathing, food digestion and even blinking.

Dysautonomia is a broad term for the many different illnesses and conditions that effect the automatic nervous systemss in some way. Some are sole illnesses/conditions such as high blood pressure. Whilst others may be effected or symptomatic of other illnesses. For example Diabetes, which effects the automatic system of being able to produce insulin and therefore treatment needs to be taken to assist that response. During medical investigations  unnderlying causes should be investigated when reaching a diagnosis.

 There are two types, ones in which there is a failing in the automatic nervous system, meaning that certain functions are not working as they should. For example orthostatic hypotension, the dropping of blood pressure upon standing as can be seen in POTS patients. The next type is where the automatic nervous system  might be working to excess. For example hypertension or rapid pulse rate.

There is also a condition called familial dysautonomia which is a genetic problem that affects people from birth. It is a rare condition but it can cause life threatening symptoms.

Dysautonomia is what is considered an 'invisible' illness, in that symptoms are not apparent to others. They would likely think there is nothing wrong with the sufferer, given that symptoms are mostly  internal.

Symptoms can include:

* Light headedness

* Fainting

* malnutrition

* digestive system problems

* frequent vomitting

* unstable blood pressure

* unstable heart rate

* Poor kidney function

Over 25 million people suffer with some form of dysautonomia. Yet there is no cure for most. Only management treatments. However ongoing research is being undertaken into the many illnesses that fall into the dysautonomia bracket. And fortunately the mortality rate for children with familial dysautonomia is improving with the help of this research.

It's likely I will soon write more posts on dysautinomia with more specific details of different conditions. Below I've included the sites I used to help research  this post. Do take a look if you would like to learn more. Also go visit Sophia's blog. She suffers from POTS and has done a few posts for dysautonomia awareness week.

National Institute of Health
Dysautonomia International
Dysautonomia Foundation

Sian x

Ageism and disability: The Zimmer Frame

 

 

Recently my house has been looking more and more like a care home. I'm lucky to have been referred to an occupational therapist who works for the reablement team. Together we've been addressing areas where I struggle around the home and on getting me the right equipment to help me and my family (who are my carers). We already had a commode for use downstairs (as we don't have a downstairs loo) and during bed bound times. We also had a bath board to help me get into the bath, as I can't stand up for long enough to have showers (sigh). However I was finding getting in and out increasingly difficult and was putting too much strain on my wrists as well as on my Mum's back. So cue a request to my gp for a referral to the occupational therapy team and I am now kitted out for disabled life.

 

 

There is one item inparticular though that conjures up all those misconceptions and misunderstandings about disability. And that is of course THE ZIMMER FRAME. Zimmer frames in todays society are associated with old age. It's almost a symbol for old age. So as a young person to be using a zimmer frame of course goes against all stereotype. At the moment I won't be using it too much outside of the house because I need my wheelchair but when I can use it outside I think I will be more appreciative of the fact that I can use the zimmer rather than my chair. Liberating almost. But in doing so I will be putting myself in the vulnerable position of not being someone others would expect to be using one and perhaps facing strange looks or comments about it. Luckily I have learned to develop a tough skin when it comes to challenging peoples perceptions of disability. I used to get paranoid just getting out of the car and walking into my chair. Or if I needed to stand up in a shop to look at something that was too high up for me to see in my chair. I felt like I was being judged. But now I have learned to shrug off that feeling. I know how bad my condition is and having accepted that I need these aids to help me. But it will be interesting to see how I fare when using the zimmer in public.

 

 

Therefore I would say that the zimmer frame is more a symbol of disability rather than old age. Or those whom old age is disabling them in some way. Because let's face it not all elderly people need a zimmer frame or even a walking stick. In the same way that not all disabled people are in wheelchairs. My Nanna is 88 and is still doing the garden and walking up and down the highstreet unaided. One day she was sat next to me on the sofa doing leg excercises while I needed help to stand up. Talk about rubbing it in. And also Granny and Grandads in a lot of cases nowadays you wouldn't even class as elderly. Remember when people in their 60s seemed really old?

I was in a cafe the other day and two women were talking about getting old and the how it can disable some of us. Needing walking aids (zimmers included of course), stair lifts and sometimes different equipmenr to help them in the home. They were saying how because of it getting old is a horrible thought. As a disabled person listening to this and actually being in the process of getting more aids it made me feel a bit melancholy. It just struck home those perceptions of young and old and as some would say being old before my time.

 

 

But by having all these aids it'd actually helping me have more independance and able to live life more when I can. It's a way of keeping in touch with my 'youth.'  I'm thankful for my wheelchair for physically letting me get out of the house. And one day I'll be exctatic about using my zimmer rather than my chair.

 

If you are struggling to do simple things about your home or are not able to do things at all due to disability then I advice you to speak to your gp. Tell them how you're struggling and ask to be seen by an occupational therapist. What they can provide varies from council to council but it is covered by the NHS so won't cost you a penny. Plus you will be taught how to use the equipment and your carer (non professional) can be assessed too, to ensure they are helping you in a way that's safe fod them. You can buy things privately and may need to do so for items the council doesn't provide but I would say do make use of this service. I only wish I'd have known a bit sooner. Now off to buy my Mum a tabbard.

 

Sian x

October means: Breast Cancer Awareness

 

Just a warning before we begin, there will be a photo of breasts in this post. Not my own you naughty lot. But when you see the image I hope you'll see why I decided to include it. October is synonomous with breast cancer awareness. With statistics claiming 1 in 3 of us will be effected in some way it is something that will change the lives of many. Over the years Cancer has not only become  the heartbreak of its sufferers and their nearest, but has become public knowledge. Unless you are a very young child or living in the remotest of places. Cancer awareness is everywhere. On posters, magazines, tv adverts to even having it's own fundraising show and merchandise available from lots of well known shops, with a percentage of each sale going to breast cancer charities. It is easily the most 'marketed' illness. So there is plenty of awareness out there.

 

However the type of awareness that is needed more of and could make such a big difference is in the detection of it. Sometimes if caught early enough the more hope there is of positive outcomes. The less chance the cancer has of progressing or spreading. Like they say early detection saves lives. Especially in younger patients. And luckily we are seeing more and more of this kind of awareness. Unfortunately many a person in their 20s and 30s may be told they are too young to have breast cancer, which can delay detection and is also grossly untrue. Unfortunately too many women are being told they're too young and therefore going untreated. These are the women that will likely lose their lives to cancer due to this negligence. So I feel it is important for everyone to learn what is normal for them. In order to go to your doctor with utter conviction if there is a change.
 

This is what happened to Coppafeel's founder Kris Hallenga, who after originally being told she was too young was refused further investigation but was later diagnosed with stage 4 breast cancer. This experience has spurred her into making sure more women can identify any changes and acting on them. Coppafeel is a charity Kris founded specifically to educate about self examination and early detection. And ever since they have been making waves. You might remember they took over page 3 for their #checkemTuesday campaign. Their latest campaign #whatnormalfeelslike is aimed precisely at everyone getting to know what is normal for them. Although controversial for it's billboard sized breasts. It's aim is to teach women more ways to describe their boobs and not just big or small. They even have a reminder service so you don't forget. Simply give them the details of how you wish to be contacted and receive regular reminders, which I think is an excellent service. For more information about Coppafeel visit their website.

 

Nestle Fitnesss have also done a remember to check style campaign too. They hid a camera in a bra (don't worry the woman knew about it) to capture just how many times breasts get 'checked out' on a daily basis. The message kind of being other people check them so so should you. Hmmm perhaps not the greatest way to be spreading the message but at least in the video it's not just men looking gratuously at them. View the video here. 

 

 

 

I think it's important though that we don't just make these campaigns just for women. There are lots of phrases like 'fight like a girl' related to breast cancer sufferers but what we have to remember is that men get breast cancer too. And I'm sure many that do feel an element of embarrassment that they have a 'womens' cancer. Lately the American NFL came under scruitany for it's efforts to raise awareness from people saying they do not support other women's issues and are not doing enough; just wishing to be seen as doing their bit. However this could be a way of making breast cancer awareness less feminine orientated and encouraging males to be vigilant too. So encourage the men in your life to get checking their chests too.

 

 

 

I think that campaigns need to move away from being gender specific. Who knows the relevance of where we keep our handbags, what colour knickers we're wearing or posting a no make-up selfie has to breast cancer anyhow? I also feel that some campaigns can be deemed too sexual, like the breast cam above and the recent no bra day. It goes against everything the serious campaigns are striving for.

 

In the bid to promote early detection and education about what normal is like for each person, I'm sharing the image below with information for both females and males.

 

 

Early detection and learning how to self examine is the best solution for prevention and improving survival statistics. The NHS in England allot 95.6 billion into cancer research and treatments each year and add to that the millions raised by all the cancer charities. We are reassured that plenty is being done to help beat cancer but it's equally important that we play our part. Perhaps more so. It's our bodies. 

Sian x

October means: Halloween

Personally, I have a love hate relationship with Halloween I love the copious amounts of sweets and naughty treats and seeing peoples decorations. I love watching films around Halloween, not scary ones though, but ones where there is lots of Autumnal beauty. Mountains of leaves and pumpkins decorating peoples porches. Maybe I would love Halloween more if I was American. You Americans look as though you know how to do Halloween right. I like the sense of community and being neighbourly. Of doing something fun for the children (and adults) of your street.

I guess a lot of it can be down to how well you know your neighbours. I swear on our street there is not as many children than come knocking on Halloween. They must bus them in. Am I the only one that finds it odd to knock on a complete strangers door and ask for sweets or money? And yet the majority of the time we teach our children to stay away from strangers. And most don't have any manners (the trick or treaters that is). 

As a poorly person obviously I can't be walking back and to, to answer the door. Just hearing the door bell can give me enough of a fright. But if I'm going to celebrate Halloween then I think a party is the way to go. A few years ago we had a family party and I had so much fun spending a lot of time on Pinterest and putting them into action. So, I thought I would share some with you and hopefully give you a few ideas of how you can decorate and what you can be eating if you're thinking of having a party (big or small.) *Just a little note to say I was much healthier then.

So first of all to dress up or not? Find out what others are doing. You don't want to do an Elle Woods or Bridget Jones and turn up to the party as a Playboy Bunny when everyone else is in a twin set. As a child my Halloween costumes always consisted of either a bin bag with holes cut out for arms, or one of my Mum's black tshirts, a plastic witch hat and some green face mask. See below for proof. But in today's society that doesn't seem to cut the mustard (kids don't know what they're missing). There are some great and not so great out there. Type in Halloween costumes into ebay or Amazon and after scrolling through pages and pages of sexified costumes you might just find some gems. If it's last minute or on a tight budget then there's always the obligatory cat or devil option. As you can see the other year I dressed up as Sookie Stackhouse in the hope that Eric or Alcide might come a knocking. They didn't, Alcide did make an appearance this year though (thanks Ali.) Unfortunately most people there had never watched True Blood and just thought I was a waitress and could ask me for drinks all night. If you have a child in a wheelchair or want to jazz up your own chair, take a look at this Mum of a child with spina bifida blog on how to create amazing fancy dress costumes.

Personally I think it's the teeth (or lack of) and mad eyes that make the costume

 

I'm thinking about doing this, this year

  

When it comes to decorating I thoroughly recommend hitting your local Poundland, PoundWorld, B&M (insert budgettastic shop here). After having spent hours on Pinterest for ideas that is. Take a look at my Pinterest board of Halloween ideas, where I've included some decoration and food ideas as well as some fun craft projects you can do with your kids. Below is some of the ideas put into action. 

 

1. Skulls on candlesticks make a classy addition. I'd put some candles (or lights if kids and drunken adults about) to make the glitter sparkle even more.

2. Make use of that big crack on your drive with some severed fingers (from Poundworld). And pour some red liquid over them. We used grenadine as it has slightly thicker consistency.

3. A scary mask in the hood of a dressing gown. We put this on the back of the bathroom door. It didn't really work on the males as they had there backs to the door but I'm quite glad I knew it was there beforehand.

4. I saw this on Pinterest and just loved it. Cover table legs with some stripey stockings (again poundworld). If they don't stay up then put an elastic band or something tied around them and cover with table cloth. Then put each leg into a black witchy type of boot. You'll need to position it quite well as not to squash the boots. And also remember to even up the other legs so the table isn't uneven. A hardback book should work.

And what would a Halloween party be without treats. Again you will find lots of inspiration on Pinterest. I have included some food ideas on my Halloween Pinterest board and some above from the party.

1. Graveyard Puddings- basically chocolate mouse or angel delight covered with sprinkles and a biscuit marked with RIP with writing icing.

2. A platter of Halloween themed sweets. Chocolate eyeballs, red laces, vampire fangs and marshmallow ghosts.

3. Gingerbread men decorated as skelletons and vampires. You could also do voodoo doll design. And more sweets in the form of jelly snakes.

4. Vampire Cookie Monster Cupcakes. And what's a party without a chipolata? I mixed in some of the severed fingers with them and quite a few people were tricked. Hehe

So there you have it. A few ideas for Halloween. How do you like to celebrate Halloween and do you have any other decoration or food ideas?

Sian x

It's the little things

Having a chronic illness as you can imagine you have to deal with some pretty big things. Exhaustion, pain, disability, the loss of your independance. But within those all consuming symptoms there are a number of smaller symptoms, or should I say oddities? Little things that can actually have a big impact on our health at times. Here is a short list of some of the little ways my body likes to remind me I'm a sick chick.

1. What you get up to in your dreams can determine how exhausted or in pain you feel the next day. And often our dreams can be very vivid. Cue smutty jokes.

2. Colours can be too bright. This Summer's neon trend was eye watering at times. And too long in the kids toys section can induce a lovely migraine.

3. You cannot go anywhere near the washing detergents aisle in a supermarket for the smell.

4. Music and sounds can make you really ill. Especially music with a heavy bass.

5. You will no longer be able to tolerate the smell of some foods

6. And with that no longer be able to eat them. Goodbye roast dinners.

7. Socks can be painful.

8. As can close fitting leather (pleather) boots

9. But you need to wear socks almost all of the time because your feet get really cold. And not just 1 pair.

10. I usually need to wear long trousers because my lower legs get really cold too. Pants tucked into socks anyone?  If I'm wearing a dress I'll usually end up with a blanket

11. On hot days you can be shivering and wrapped up in a blanket.

12. On bad fibromyalgia days a sheet can actually feel very heavy and cause pain.

13. As well as the feel of your clothes on your skin. Equally uncomfortable.

14. If you're typing and watching telly or listening to a conversation at the same time you will end up typing what's being said.

15. Taking straws with you when you go out because you can't always lift a glass or cup. Especially for hot drinks at home or out. No one wants to spill a hot drink down themselves.

16. Headbands, headphones and eardefenders feel like they are squishing your head.

17. And headphones and ear defenders make your head pound so much they make you feel so sick. That renders them completely useless even though the noise you're trying to block out is making you ill too.

So that's just a few things that affect me. What odd symptoms do you experience?

Sian x

Body confidence

 

Last week I spoke about ending the awkward when it came to interacting with disabled people. Today I'm saying end the awkward with yourself. Today I want to post about body confidence. Confidence takes time and is rather like a plant it needs to be nutured and given patience as it grows. It also needs constant reassurance and care. It's a process. One that will soar at times but also be knocked down at others. But for me I think body confidence does not just stem from having the body of a model (and we know that model bodies aren't representative of real bodies); but also having a healthy relationship with your head/mind. Yes I'm talking mental health.

 As I said in my body image post sometimes it's our psychology and thoughts that are the last thing to change when we are actively trying to change our body shape. So used are we to being negative about our bodies and perhaps suffering from low self esteem. Comparing ourselves to others, especially what we see in magazines and on tv. 

 

Personally, I have suffered from low self esteem and lacked confidence for much of my later teens. My relationship to my body though was pretty non plussed. I didn't particularly care what I looked like and didn't have much knowledge of what fashions suited my body shape. To be honest I think it was due to me trying to maintain good mental health. So focused was I on trying to be happy and find new goals. I spoke in my body image post about having to stop athletics and horse riding and I could only manage a few hours of school a week. So life felt completely flipped upside down as did my confidence. To be honest I was angry that my body no longer worked as it had. So my concerns were more based on wanting a body that worked not how it looked.

Of course I'm very much in a similar position now. I would love my body to work better and not be so broken. But at the same time I'm appreciative of the things my body does let me do. And I take more of an interest now into my appearance. Not in a pinching the flab and wrapping a tape measure around my waist every day kind of way. But in dressing up and making an effort with my appearance when I can. Now I love to buy clothes and to experiment more with my style. I used to have to dress all in black and be more masculine in my combats and steel toe caps for work but now my wardrobe is really girly. If you saw my holiday lookbook you'll see that I  love floral prints and dresses. 

 

Not long ago I met my new hairdresser who is just an amazing lady. As well as working freelance she also has set up a salon in a local mental health ward. She teaches the ladies and men there that sometimes taking pride and care into our physical appearance can make a difference to our mental state. They can pop in to the salon for a bit of pampering  or learn how to do their own hair and make up. It might sound trivial and I know at the darkest points of mental illness appearance takes no presidence, but for people in recovery it's yet another tool to add to help you get better. Sometimes it's as simple as having someone there and giving you attention. She's been in talks to set up similar schemes in other units.

So as much as people focus on making physical changes it's just as important, if not more so, to focus on the mental aspects. If reading magazines slating peoples bodies depresses you then stop reading them. If you hate going to the gym then don't go. Find a way to exercise that you enjoy and makes you feel good. It might be riding a bike or it might be pole dancing. The point is enjoy getting the body you want (if that's what you want). 

 

Obviously for my chronic illness friends who find themselves unable to exercise but don't feel particularly body confident then work on building your confidence in other ways. Try to eat healthily, give your body the right nutrients. Wear your favourite clothes. Pamper yourself. Just painting your nails can give you a little lift. Or a slick of lippy. Lipstick Tuesday anyone? Okay it won't change your body shape but you'll be a bit happier about it. At the moment I feel like I've put on a bit of weight with needing to spend more time in bed. I can tell by how tight some of my clothes have become. But what can I expect when doing even less? And it's important to keep eating for energy, as you already have precious little of it. I like to remember that my body has a lot to contend with, every day it hurts in some way and feels attacked. So knowing it's going through a hard time I don't like to mentally torture it too. The same goes for any Mum's out there who's bodies have changed after child birth. Remember the amazing things that your body has done. It's carried a baby and provided somewhere safe for them to grow until they were ready to be born. Your body has nurtured them whilst in the womb and perhaps afterwards if you have breast fed your child. 

So everybody your homework is to focus on being happy. Not all the time obviously. Being sad is okay too. But learn to be happy within your self and who you are. If you can do that you are doing yourself a big favour. 

Sian x

All images are from Pinterest

End the Awkward

It's not long ago that people used to call disabled people invalids, you may still hear it from older generations. Of course this term implies that they're not valid in society, which is a very untrue belief. Disability is not a lifestyle any of us choose, whether we are born disabled or suffer an accident or illness in later life. The term disabled isn't much better either. Many of us are plenty 'able.' It all depends on the condition that has made them disabled. When it comes to illness and disability it can make people really uncomfortable and awkward. People simply do not know how to behave when faced with meeting a disabled or chronically ill person, or how they think they should behave. So to tell you a funny story. Before I became ill I was getting off a train when this blind young man stepped forward to feel for the train and subsequently got a handful of boob. The poor guy was mortified and so apologetic. After checking he was ok I just burst out laughing. It was an easy mistake to make. Could you imagine if I'd have reacted as though without regard for the fact he was blind? Basically calling him for a perv and sexual harassment. 

So a good example is seeing a woman with a bald head or wearing a heafscarf and automatically your response is sympathy and sadness. You picture her as a brave soul that is trying to have a normal day whilst battling terminal cancer and facing the indignities of the treatment. But maybe that woman does not have cancer at all. Maybe she has alopecia. Or perhaps it's even a personal choice.

One of my recent favourite tv adverts is for Barclays bank. If you haven't seen it, view it here. It shows how they are helping their customers more by showing a visually impaired comedian demonstrating their cash machines by plugging in headphones so he can hear the instructions. It also shows him doing a stand up gig and joking about how these cashpoints work, which I think is a great touch as he's showing a lighthearted side to it. By making people laugh I think it is a great way to make people think more positively about approaching disability. In a way saying "hey don't feel sorry for me." It's a great way to connect with people.

The point is regardless of illness or disability we are still people. Just the same as everyone else but just with a different story to tell. But on a fundamental level we still have all the same feelings and fears as everyone else or like a 'normal' person, to use an awful term.

The charity Scope, the charity "that exists to make this country a place where disabled people have the same opportunities as everyone else" have recently launched a campaign called end the awkward aimed at eliminating any awkwardness when it comes to interacting with disabled people in all kinds of situations. Here's a link to a playlist of all the videos. I really recommend watching them and sharing them. Basically it's about saying "hey, life is full of awkward moments, but just keep calm and remember to just be normal." The fact is you're likely to encounter disabled people whereever you go, so learning how to interact and not feel awkward is important.

To learn more about Scope visit their website, blog or follow them on Twitter @scope.

Do you have any experience of people being awkward towards you? Or have you ever panicked at how to react to a disabled person? Let me know in the comments.

Sian x