 |
| Beautiful Boo....erm???? |
Hey Everyone
It’s amazing…people have been requesting an update on the blog J
Well we have entered November and the sky is filled with whizz, bangs and flashes. The children have only just wiped off their Halloween make up and here they are running from the front to the back of the house to see “the biggest firework they have ever seen!!!!”.
The days have suddenly become shorter and everyone is starting to think of baking and soup. It seems to be annual need to shut the doors to the outside world and start thinking about the next big event. We all that is Christmas, and let’s be honest, that is a completely different post.
So, Halloween was an experience with biscuit baking, pumpkin carving and a very scary looking Boo. Thanks to Amy for the wonderful make up……I thought the scar prosthetics were a particularly nice touch. As for the “eyeball biscuits” I made, well they were all eaten so must have been ok. I would like to apologise to all the parents whose children partook for the sugar rush that I know will have hit 2 hours later J
I have been to my first Murder Mystery Night, it was brilliant. We somehow won, I still do not know how ?!?!?!?! The cast were really funny, the company was great (Caz) and the food lovely. A perfect evening. Guido was definitely more Rick Mayall from Black Adder than Guy Fawkes…Hurrah and Woof!!!!!
In a few weeks I have a big night out. It is my Company’s annual award ceremony. There is lots of talk about dresses and accessories. Shock of all shocks….I am not shoe shopping…I know, unbelievable isn’t it. Don’t worry, I haven’t lost my passion, I just have a pair of gorgeous winkle pickers already sparkling in my wardrobe. Boo has already claimed them for when she grows up. Like all my shoes apparently???!!!?
I can’t wait for the evening as it means that I get to catch up with people I haven’t seen for a while. This is always interesting as it may be the first time that some of them have seen me in the “Chariot” and with the additional “Cushings syndrome”. Think of Mrs Potato Head from Toy Story in a rather fetching outfit…well that’s me. On the upside there is no requirement for a handbag as I can keep all my things in my back. I promise to take lots of photos.
I want to take this opportunity to thank Catherine who is fantastically running in an 8K race for Vasculitis UK
I also would like to take a moment to acknowledge some close friends that are going through their own challenges. Keep strong my darlings and know that we are thinking of you xxxx
Another mention is for the paramedics and the staff at the local A&E. I enter their world every 2-4 days at the moment. They are so welcoming and friendly that any embarrassment soon dissolves away. I am in awe of them all. I expect to be on their “Secret Santa” list because I am there so often. Amazing people!!!
I have embarked on some new ink designs and though I know they are not everyone’s cup of tea, I am really pleased with them. It was just another thing to cross off of my bucket list. The list isn’t very long so if you have some exciting ideas that I can do with my limitation please let me know.
One of them is to transform my wheelchair into a sledge so I can enjoy the snow with Mark and the children, any budding designer buffs out there? I have Roxy to pull me. I can see it now, the image of a funny looking potato head squealing her lungs off, as she leaves everyone in her wake on their bottoms covered in flying snow….perfect!
I am due to see another super duper consultant this week. He is going to wave his magic stethoscope over my head and fix me…ok, so that’s not going to happen. But we are seeing a consultant to get and extra opinion on my treatment and medication. Mark and I will, like usual, enter with no expectations. That way disappointment is less of a likelihood. Just hope that I do not see a Dougie Hauzer wannabe, who looks 12 years old and whose Mum ironed his shirt that morning. I sound a bit harsh but this is a make or break appointment. Such a long time on the road may shorten my fuse somewhat J
The fact that the appointment is an 8 hour round trip means that strict planning is required. Meds, emergency paperwork, list of local hospitals on route, chargers, blah, blah, blah…and so the list goes on. Knowing our luck we will forget the chariot and Mark will have to carry me on his back, well he is Uber fit now J
This is also now needed for any trips out of my town’s boundaries. It is one of the many things that someone, like me, with a serious or chronic condition has to think about.
Things have been very hectic in the “Hill” household with me constantly hitching a ride in the big yellow van. Luckily I have a “personal protocol plan” with the Ambulance service that allows medication to be administered at home. This means that I only have to be monitored. As an expert patient I am very lucky to be able to advise the Doctors when I am able to go home…I have it to under 2 hours Yippee!!!!
For anyone who has a chronic health condition that requires emergency help I would suggest hat you look into a Paramedic Plan as it makes life much easier for you and the services. It takes a bit of persistence but it is definitely worth it.
Things have taken a slightly different turn in our house. Jacob is taking his role of an obnoxious teenager very seriously and continually swapping between grunting at us and not talking at all except for asking for food…..and boy, can he eat!
Boo on the other hand is like a radio. Continually talking, not stopping for breath, and twittering like a little bird of paradise. Between them I feel like I am on the set of Sesame Street
Both of them have had so much to deal with this year. I am immensely proud of them.
Mark is turning into the next Bradley Wiggins. He is now a keen cyclist and managing to achieve, on average, about 35 miles per ride!!! He looks so different…..especially in his cycling gear. J He is like the man I married over 17 years ago…my goodness is it really that long, boy do I feel old!
He continues to be my rock. He calmly holds me when I “snot cry” (those who have seen know it is not pretty J ), is my voice of reason and to be honest my soul mate. Quite a slushy comment I know but sometimes you just have to say it out loud
A while back I posted the “Spoon Theory”. This is a fantastic view of what it is like to have to pre-plan your days just to ensure that you get through them. Sometimes the need to prove yourself is overwhelming. It is almost a form of denial. “this illness hasn’t changed me”..” I can still do everything I did before”…”Of course I will be there”…STOP!!! THINK!!! We have all been guilty of taking on things that we probably shouldn’t but with a chronic/severe condition it can prove very costly. So don’t worry about turning down a friend’s invitation, if they are a true friend they will understand or even suggest an alternative solution. If you want to frown or look unhappy, do so. You the right to be a bit fed up. People need to know when you are not on tip top form. This way they can support you. It has taken me a long time to remove the façade that I created. I used to say that things like “I’m fine” or “it could be worse” when, in fact, I was far from fine and things couldn’t get any worse. Being truthful means I now have more “spoons” and get to enjoy life more.
Below is a blog post by Nicoletta Skoufalos regarding how to balance festivities and a chronic illness. Her subject matter is about Christmas but to be honest it is relevant for anytime of the year when you have celebrations.
Jingle Bell or Holiday Hell? Part 2: Balancing Act
Holiday cheer, Christmas songs, gingerbread cookies, eggnog, and carolers oh so nice; shopping mayhem, endless baking, non-stop Christmas songs, want to break that CD player, the tenth holiday party of the week, out of town visitors, shows and pageants...when can I get some sleep?
The holiday time is certainly a test of how well people can pace themselves and of managing an overload of expectations. Yes EXPECTATIONS...not responsibilities. During the holiday season, it is easy to confuse expectations with responsibilities. Oftentimes, people experience certain events as things that they must do lest they let down their loved ones. However, when one really thinks about it, is the holiday season really any different from the rest of the year? It is true that there can be many fun and exciting events during the holiday time, but exciting and fun can quickly turn to burdensome or overwhelming if not properly managed.
The holiday season balancing act is something that most people in the western world experience every year; however, this balancing act can be especially challenging for people who live with chronic physical illness. Although most people need to figure out how to manage the numerous holiday parties and events of the year, some people with certain illnesses need to pay even more attention to the amount of rest that they are getting, how much physical activity can be tolerated, and what level of stress is appropriate. The responsibility of balancing one's activities and health makes it very apparent to some people with chronic illness, that their illness is a reality and it can serve as a reminder of some of their limitations or life adjustments. This realization can cause some to experience various feelings such as sadness, anger, frustration, denial, or helplessness, at a time where society sets an expectation of joy and cheer. Sometimes these unpleasant feelings may result in some people with chronic illness wanting to engage in as many holiday activities as possible in an effort to will away the reality of their condition, which can follow with a worsening of one's health. On the other hand, just because a person lives with chronic physical illness does not mean that he or she is banned from participating in holiday activities all together. This is another extreme that can follow from people's loved ones' fears and concerns about the person with the illness, or from the person with the illness him or herself becoming depressed and hopeless, and believing that living with an illness means having a poor quality of life.
The key is balance...no different from folks who do not have a chronic condition. Sure, mastering the correct balance for yourself may be trickier than the balancing act of a person without a chronic illness; however it is completely possible. An important thing to keep in mind is that the holiday season is a time for fun, love, and joy. It is easy for these things to be forgotten as the societal message is one of "musts," making the distinction between expectation and responsibility difficult. Attending a million holiday events is nobody's responsibility but it may be expected by some folks in your life. Do not forget that it is ok to not meet everyone's expectations for what you can or cannot do during the holidays. What will happen if you pass on some holiday events for the benefit of yourself? Nothing other than feeling physically good, probably emotionally good, and able to partake in your actually responsibilities. So you balance: you choose what holiday events are really important to you and you take part in them, and the one's that are not on the top of your list you pass on. If anyone else is bothered by this then it is their problem to deal with as it was their expectation that led to their own disappointment, and this is something that you can communicate to them.
The holiday season can at times leave people feeling a bit helpless. Get empowered! Stand up for yourself and your needs, and communicate them when you are not feeling understood. BALANCE YOURSELF!
Happy Holidays!
The holiday time is certainly a test of how well people can pace themselves and of managing an overload of expectations. Yes EXPECTATIONS...not responsibilities. During the holiday season, it is easy to confuse expectations with responsibilities. Oftentimes, people experience certain events as things that they must do lest they let down their loved ones. However, when one really thinks about it, is the holiday season really any different from the rest of the year? It is true that there can be many fun and exciting events during the holiday time, but exciting and fun can quickly turn to burdensome or overwhelming if not properly managed.
The holiday season balancing act is something that most people in the western world experience every year; however, this balancing act can be especially challenging for people who live with chronic physical illness. Although most people need to figure out how to manage the numerous holiday parties and events of the year, some people with certain illnesses need to pay even more attention to the amount of rest that they are getting, how much physical activity can be tolerated, and what level of stress is appropriate. The responsibility of balancing one's activities and health makes it very apparent to some people with chronic illness, that their illness is a reality and it can serve as a reminder of some of their limitations or life adjustments. This realization can cause some to experience various feelings such as sadness, anger, frustration, denial, or helplessness, at a time where society sets an expectation of joy and cheer. Sometimes these unpleasant feelings may result in some people with chronic illness wanting to engage in as many holiday activities as possible in an effort to will away the reality of their condition, which can follow with a worsening of one's health. On the other hand, just because a person lives with chronic physical illness does not mean that he or she is banned from participating in holiday activities all together. This is another extreme that can follow from people's loved ones' fears and concerns about the person with the illness, or from the person with the illness him or herself becoming depressed and hopeless, and believing that living with an illness means having a poor quality of life.
The key is balance...no different from folks who do not have a chronic condition. Sure, mastering the correct balance for yourself may be trickier than the balancing act of a person without a chronic illness; however it is completely possible. An important thing to keep in mind is that the holiday season is a time for fun, love, and joy. It is easy for these things to be forgotten as the societal message is one of "musts," making the distinction between expectation and responsibility difficult. Attending a million holiday events is nobody's responsibility but it may be expected by some folks in your life. Do not forget that it is ok to not meet everyone's expectations for what you can or cannot do during the holidays. What will happen if you pass on some holiday events for the benefit of yourself? Nothing other than feeling physically good, probably emotionally good, and able to partake in your actually responsibilities. So you balance: you choose what holiday events are really important to you and you take part in them, and the one's that are not on the top of your list you pass on. If anyone else is bothered by this then it is their problem to deal with as it was their expectation that led to their own disappointment, and this is something that you can communicate to them.
The holiday season can at times leave people feeling a bit helpless. Get empowered! Stand up for yourself and your needs, and communicate them when you are not feeling understood. BALANCE YOURSELF!
Happy Holidays!
So, what is next for us? Well, after the awards ceremony it will be a very speedy dive into all that is Christmas. From, screaming at the children and Roxy to keep away from the tree, to the many social activities throughout December.
I have so much to look forward to over the next two months. Boo’s birthday, award ceremony, meals out with friends, Christmas casino night, Boo’s carol concerts and many more things. The list is long.... This year I consider myself to be extremely lucky.
Health wise, well that is a different matter. I shall ensure that there is always a sparkling outfit with beautiful high heels in the car. This is to ensure that if I am in the emergency room and leave in time to attend a Christmas party I will have my supplies. HUVs hasn’t stopped me enjoying life so far and it won’t stop me having fun now J
That is about it for now….
See you on the other side of November……
Until then, big love to you all
Sarah xxxx
