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29 Dec 2012

Seasons Greetings

First of all, Merry Christmas to you all and hope you had a lovely  low pain Christmas day and the days surrounding were full of love and happiness.

Just a short post to wish you all well and to say that after 3 days in a row visiting family and travelling from town to town, meeting lots of people, I am still alive and in one piece... just about.

Christmas day was lovely and relaxed for me, though my family all seem to be coming down with some sort of flu virus, so I may have to isolate myself from them before I catch it, because it would knock me sideways!

I was very lucky this year and got the Kindle Fire from my parents and right now I am loving it. There is so much I can do from it (like laying in bed writing this post), and I am exploring all the amazing apps and books I can get!


soon we will be heading into the new year,2013 and all the great things it will bring for us all. I have been pondering over goals and revolutions for the new year but I'm not really sure on many, apart from the obvious main things like finding a job, a hobby, and continuing to run this blog and my pages raising awareness.

When the new year arrives I will be back to blogging and sharing things with you guys, what I would like to know is what sorts of posts you'd like to see so please leave a comment below with your suggestion. :-)


Thank you for reading 
Happy New Year
Jayne 
xx


23 Dec 2012

It's the '2012' Post.

well I think most people know that 2012 has not been a good year for me, being diagnosed with Fibromyalgia, coming to terms with my illness, trying to find medication that will work, losing my job, and all the other things that come with having a Chronic condition.

But I feel (through all the ranting) that I have come a long way this year and have still done a few pretty cool things too!

The beginning of the year was most likely the worse period. Learning about Fibromyalgia and how to live with it. It became my life, it depressed me and I was so so angry at the world. I got told I probably wouldn’t be able to go back to my job in the nursery, which broke my heart, I cried for days at this realisation (and it still stings a little now).

I also got my walking stick/cane around this time. I was petrified and embarrassed to use it. I was 19 and walking with a cane. I’ve grown since then and now I have no shame in my stick, I still get funny looks but I laugh them off most the time. My stick has given me confidence and lets me go out and do things I couldn’t do without it to support me.

Then in April I showed my body that even if it was against me, I would still get out there and do the things I wanted. Going to London to see Frank Turner was the most amazing experience. I was lucky to get my standing tickets changed to seated and although I missed the FTHC meet up before because I needed to rest, I still got to meet Valerie just before the gig :-D and also after the gig me and Ben saw Beans on toast do a street gig which was crazy! Then we went to London Zoo the day after as I have a hippo there that I have adopted, it was an amazing day and even with all the pain and exhaustion, I am so happy that I went and did it and showed that I am still able.

In August, Benjamin took me the lake district for my birthday weekend which was amazing and totally worth it. We had so much fun, I had learnt by then how much my body could take and how to deal with pain. It was such a gorgeous weekend.

In June I took a HUGE step for me and I left the house on my own for the first time in 6 months, only to the local post office. But since then I have gained so much confidence I have gotten the bus to town and been shopping on my own and although it can still scare me sometimes, the fear has shrunk so much.

The rest of the year has nearly blurred into one, of doctors appointments, numerous medication trials and being housebound. I left my job in October after months of sick leave, and am fighting against the benefits system now.

The main thing I am proud of this year is starting my ‘Chronically Crafty’ blogs, facebook page/twitter and most recently my Etsy shop. Although I am still only starting to get into becoming a health activist, I feel like I have done so much already. I have a big interest on all my pages and blogs and the numbers of supporters are still growing which gives me so much motivation to carry on helping people and spreading awareness of chronic pain conditions.

So overall this year has not been a great one, but it has had it’s amazing moments, and I can still think back on moments this year and smile, and be grateful of what I have got and what I’ve done.

Finally a HUGE thank you to everyone one of my followers for being there for me when I’ve needed help, thank you for listening to me and supporting me with my blogs and support pages. I am so so grateful that I have found all of you, and even though we may not have met you all mean so much to me.

Here’s to 2013 being a good year!

20 Dec 2012

Writers block , A huge thank you and some new things!


Hey, I'm sorry I haven't updated here in such a long time. Everything has been so hectic so close to Christmas and with birthdays too. I've decided that I am not going to try and get a post out now until most likely the new year. I'm just trying to pressure myself too much to write something and I have a completely blank mind.

Although I will not be posting on here until the new year, I will be updating my other support/awareness sites so make sure to check them out and give them a follow / a like to get daily updates, support and advice!

Facebook: http://www.facebook.com/ChronicallyCrafty - I'm so close to 50 likes which is crazy! Thank you all so much.

Twitter: https://twitter.com/Jayne_Burgess - Although this is under my personal details rather than 'Chronically Crafty' I do still update this and use this account to post support and information on chronic illnesses and awareness

Tumblr: http://chronicallycrafty.tumblr.com/

Pinterest: http://pinterest.com/ChronicCrafty/

Also two new things!

Etsy: http://www.etsy.com/shop/ChronicallyCrafty  - I have recently set up an Etsy shop to sell the jewellery that I make, so make sure to check it out, I ship worldwide

Email : ChronicallyCraftyjb@gmail.com - I have set up this email address so that people can contact me if they want help/support or just someone to talk too who understands what it is like to live with a chronic illness.

Thank you everyone who has been reading my posts this year, I am still getting used to the blogging world and loving it!  I would appreciate you checking out my other sites and supporting me.

Please leave a comment and let me know what sorts of posts you'd like to see me write in the new year!

Thank you for reading
Take care
Merry Christmas and I wish you all a happy new year!
Jayne 
xx

16 Dec 2012

Video : Hank Green talking about Chronic disease


Hank Green - Living with a Chronic disease :

In this video of Hank Green, which he talks about having Ulcerative Colitis, and just generally on living with a chronic condition.

To me this video offers a great outlook on life whilst living with a chronic illness/disease , definitely worth a watch.

“Chronic disease is a new normal. And it’s maybe not as good as the old normal. But it’s certainly better than other things could be.”

“Yeah your life is going to be a little bit different from someone who doesn't have a chronic disease, but your life would be very different if you were born in a different country, or if you were born with a different skin colour or if you were born with a different amount of money in your bank account. There is always things to wish that weren't the way they are. But that’s never going to be a fun way to live your life.”

Thank you for reading
Take care
Jayne 
xx 


14 Dec 2012

It's time to get into the Festive spirit!

I had every good intention of getting my next post written and up on her today, but the weather here is wet and my body is feeling it. Very high pain levels and very pain possible is flaring up .

So I thought i'd spread some festive spirit with this picture I've found on-line.


I hope you all get one of these presents this year and have a low pain Christmas .

Thank you for reading
Take care
Jayne
xx

12 Dec 2012

How to survive the Holiday period.

I thought as it is now 12 day's to christmas (roughly) I should write up my top tips to surviving the holiday's and still making it a good time to remember. So here we go...


Be prepared! - write lists of all the people you need to write cards too and who you need to buy presents for. Write lists for food you need to buy and pretty much write everything down so you don't forget.

Doctors and Medication! - Check with your doctor for their work times around the Christmas period and make sure you have enough medication to get you through the period. The last thing you want is to run out of medication when all the doctors and pharmacies are shut!

Presents! - Shop on-line, it's the best and easiest way to do it. You don't have to deal with busy shops, long walks and standing in queues. You can do all your shopping from your bed, and even get the gifts wrapped and delivered to the person you're buying for!

Food! - If you are hosting the Christmas meal, ask your guests to bring a dish each, split the meal between people that way everyone only has to cook one dish each and it saves you having to slave over the oven all day wearing your self out!

Decorations! - get your friends and family to come round and help you, have a day all together having fun decorating the house, make it enjoyable and with people helping you it decreases the stress and gives you a chance to have a rest every now and then!

Drink! - It's that time of year to enjoy a small drink or two, make sure you know how much you can drink that won't interfere with your medication. Have fun and enjoy yourself but be careful, you don't want to run the occasions by drinking the wrong thing and having bad reactions with your medications.

Social Gatherings! - It gets so busy with all these people you need to go and see, Christmas do's and family gatherings. Take time to have a sit down (or a lay down if possible) and relax. People around you will not mind if you need to take some time out. 

Most of al have fun and enjoy yourself, after all 'tis season to be jolly', and  to end this post enjoy a photo of my pups getting into the Christmas spirit! 




Thank you for reading
Take care
Jayne 
xxx


9 Dec 2012

beat those winter blues!


It's that time of year again, the day's are short, the weather is dull and chilled, sometimes you can't help but to feel a bit low and wish for the sunshine again, but here are some tips to try and help you beat those winter blues.

Vitamin D :

Vitamin D level's also known as the Sunshine Vitamin, can drop in the winter months (especially if you live in places with limited sunlight). The darker day's can leave us feeling a bit glum but it also can have an affect on our Vitamin D levels so here are some way's to boost that Vitamin D and help you to feel more like you in these dark winter months!

  • Try to spend as much time as possible outside, take advantage of any sunshine that you can get, also breathing in some fresh air will be beneficial too!
  • Get lot's of oily fish, eggs, milk and butter into your diet as they are packed with Vitamin D and will help boost your levels up.
  • If you don't want to take standard Vitamin D supplements Cod liver oil is a fantastic source of vitamin D and will also help with those stiff joints.
  • Check with your doctor to see what your vitamin D levels are like, taking in too much vitamin D can be toxic and bad for your health. Checking Vitamin D level's is just a simple blood test and it's always better to be clued up on your own body before jamming in lot's of supplements.

Keep the Mind Active:

Winter is a good time of the year to learn a skill, find a new interest or hobby. Also finding a new interest will give you something to focus on, especially if you are out of work due to illness. Also sharing your new found hobby with other people either family and friends or on an on-line community. There is hundreds of websites with different crafts and DIY idea's to get your mind running and to give you something to look forward to work on each day.

Also doing mental exercises, there are lot's of games/crosswords/Sudoku puzzles that you can purchase in books or even games for the WII or the DS games console's to keep your mind active and to entertain you therefore making the day go quicker too.


Keep Active:
Another way to fight away the winter blue's is to stay physically active.
  • -online/you tube exercise video's
  • -dvd exercise video's
  • - Video games - Wii Fit/ Zumba/ Just dance
  • - On brighter day's go for a walk - or go for a long winter walk wrapped up all cosy
  • -Yoga 



Eating Healthy:
Foods with too much sugar or caffeine can alter your moods, they may give you a quick rush of energy but throughout the day they will make you feel sluggish . Also high carbohydrates such as pasta and bread can often leave you feeling tired and sluggish too wish can add to that winter blues feeling.

Apples are a good food to snack on (along with all other fruit and veg) as apples contain as much caffeine as a cup of coffee! Oily fish such as salmon and tuna are great as they are high in omega oils and vitamin D which is an essential over the winter A

Some other small little tips:

  • Stay social, having company helps to boost your mood no matter what time of the year. Make time to see people and have fun and remember Laughter is always the best medicine
  • Speak to your doctor about light therapy, usually used to treat Seasonal Affected disorder it can help boost your brain activity and makes up for the lack of sunlight in the winter months.
  • Try and make the most of the winter months, it's an excuse to burn candles, decorate the house pretty for Christmas, wrap up warm and drink your weight in tea and hot chocolate.
  • Do the things you love, with the people you love, take care of your body and remember soon the sun will be out again and thing's can always get better.
Thank you for reading
Take Care
Jayne
xx

4 Dec 2012

Back into blogging , rambles and a bit of an update!


HAPPY DECEMBER EVERYONE!

I had a few day's break from finishing the WEGO Health's National Health Blog Post Month challenge and now I am back to start being in the swing of blogging. I'm not sure yet how many times a week I will post but I am aiming for at least twice a week or more!
  You will have to bare with me at the moment I am still trying to fight off a flu bug and struggling along with a shoulder that keeps giving way, But hey ho I'll fight through.

There's no real topic to this post just a bit of a catch up on how I'm doing. Today I finally got up the courage to call my Doctors as I have been putting it off for months now (just gained some sort of fear of going back) But I had no luck today and got to ring back tomorrow. It's just for a bit of a check up and I'm going to get him to look at my shoulder and also going to ask for blood tests to check my vitamin D levels and to see if I am allergic to gluten, although I think I just have a slight intolerance.

Think that is it for now, I am currently planning a blog that I hope to get up at the weekend or before, but going to Lincoln's Christmas market on Friday so I might get some photo's and hope all the hill walking doesn't break me too much.

Thanks for reading 
Take care
Jayne
xx

30 Nov 2012

Day 30 – Friday, Nov. 30

Recap NHBPM - Last day , We did it 30 day's and 30 posts!

Doing National Health Blog Post Month has made me realise how passionate I am about becoming a health activist  and raising awareness for Fibromyalgia and other chronic illnesses. I have really enjoyed stretching my brain to write posts every day, thinking of different way's to show my thoughts and idea's.

I feel like I have really gained a lot from doing 30 posts in 30 day's, it has given me confidence in blogging about more personal and deeper things, but also to keep it balance with some light hearted posts too. I've loved all the comments and messages that I got for posts I had written.

As a new blogger and being new to becoming a health activist NHBPM has been a fantastic way for me to join the world of health blogging and raising awareness on-line. It has been a gateway for me to open my mind and encourage me to do something about my passion for supporting people and raising awareness.

I am really hoping that this blog along with my Tumblr blog and my facebook page that I will be able to create a community who can support each other and together we can work together to raise awareness of these conditions that alter our lives so much.

Thank you for reading
Take care
Jayne
xx

29 Nov 2012

NHBPM - Day 29 – Thursday, Nov. 29

“If I could accomplish one thing (anything) in 2013 it would be… to keep on fighting and get my life back. 
I am not going to give up. 2012 has been a truly awful year, it was bad news followed by stress and more bad news. I want to forget this year and take notice to how much stronger it has made me. 

In 2013 I aim to :
  • get back into volunteering 
  • start working again
  • build my confidence back  up
  • get my social life back
  • and prove to everyone that I am strong and that I will not stop fighting.
Fibromyalgia may be my life now, but now in the sense that I am going to raise awareness to others, I am going to work to be a health activist to create an on-line community to support people who are affected by chronic illness and their families.

2012 will soon be behind us and 2013 will be a better year, it will be a happy year! 

Thank you for reading
Take care
Jayne
xx

28 Nov 2012

NHBPM - Day 28 – Wednesday, Nov. 28


Interview a community member!

Thank you to Marshel Crittenden-Taylor for taking part in this interview/survey about her life with chronic illnesses.

Q1) What Chronic illness/health issue is it that you suffer from ? Fibromyalgia, Diabetes, Uncontrol high blood pressure, IBS, Arthritis, Water on the Knees, Slip Discs (spinal and neck), Degenative Disc, Curved Spine, Spinal Fusion (that fail) host of other complication from internal complication and Chronic Fatigue Syndrome.


Q2) How long have you been dealing with this illness? If it is, how long did it take to get diagnosed?
Since 2000. Diagnosed in 2002.


Q3) What brought on your illness if anything at all? 
I believed the trauma to my body after having a difficult pregnancy and emergency C-Section.


Q4) What are your main symptoms, how do they effect you? 
Pain and nerve damage that is wide spread through out my body!


Q5) Do you go to school or work? if so what are you able to do?
I was let go from my banking job in 2010 due to excessive absences.


Q6)What do you do to stay positive through everything?
Prayer helps me so much because I can image getting heal and not dealing with such a crippling disease.


Q7) Do your friends and family support you? if so how? 
Both support me by letting me tell them what I can and can not do. Most days I can't even enough energy to handle my business so it is done mostly by phone. They try to make sure that I watch what I eat and rest as much as I need it. Which is a lot of rest!


Q8) have you found any alternative treatments / diet changes that help you ? 
My doctor just suggested that I go gluten-free. This is so hard because my diabetes is toxin because of the Fibromyalgia and my large intake of insulin twice a day.


Q9) do you find support from places other than family and friends, for example support groups or an on-line community? 
No. Online community are mostly not updated and I try to find a support group with no success in my area.


Q10) how do you feel that your life has changed since becoming ill? 
I push myself to be a great mom and do those things to let him know that I am strong but when I am having a bad flare up day that I can only do so much. Travelling was what I loved to do and that is too much on my body. I swell up so much with my muscle that sitting for long is hard. I loved my job but do one will hire me because of my spinal fusion and unable to lift items over 5 lbs.


Q11) What advice would you give to someone who has just been diagnosed ? 
Stay strong and rest when you need to rest because being exhausted is something that you will have to deal with until they find the right medicine or cure for us.


Q12) What is your favourite positive quote/saying that you try to live by? 
Don't judge her because you haven't walked in her shoes!


Q13) what is one thing that you are proud of yourself for regrading your illness? 
Keeping a smile on my face no matter what. Even when every trigger point is going off at one time I am a great mom to my son because he was so worth it!!!


As I had a lot of people's requests to take part in this survey/interview I have linked it on my side bar above my photo so that you can use on your blog to help spread awareness to others.
                                                     Chronic illness awareness survey

Thank you for reading
Take care
Jayne
xx

27 Nov 2012

Day 27 – Tuesday, Nov. 27 -


Today is a 'Get out of post free' Day, But I am going to use this post to link you all to my social network sites and other means of spreading awareness.

Please check them out as I am working hard to get these sites up and running and need some support from people so if you can follow/like my pages please help me out :-) thank you.

My Facebook page :
http://www.facebook.com/ChronicallyCrafty?fref=ts
I only set this up yesterday and I will be updating it daily with any useful articles/links and also inspirational posts to help  raise awareness and support people with chronic illness and health issues.

Tumblr :
http://chronicallycrafty.tumblr.com
I have had this blog going for a while and am close to 100 people, it is a lovely way to share information and fun pictures and inspirational quotes to support people with chronic illnesses.

Thank you for checking out my sites and a bigger thank you if you support them by following and liking them.

Thank you for reading
Take care
Jayne
xx

26 Nov 2012

NHBPM - Day 26 – Monday, Nov. 26 - Part 2

 - Bonus Prompt: Raise awareness for another condition!

I will be posting two of these today to Raise awareness for two different conditions that people I talk to suffer from.



Hello, my name is Josephine, I am 15 years old and I have Cyclic Vomiting Syndrome.

Cyclic Vomiting Syndrome (CVS) is a disorder that affects both children and adults and causes recurring attacks of nausea/extreme vomiting that lasts hours to days and sometimes weeks. CVS episodes can occur several months, or weeks apart. Attacks can be caused by stress, intense excitement from events such as birthdays or holidays certain food triggers, menstruation and infections. The symptoms of a Cyclic Vomiting Syndrome attack are light sensitivity, abdominal pain, severe nausea and retching. The person will be pale and unresponsive, sometimes refusing to talk or swallow in fear of it precipitating vomiting. The sufferer may also have migraines, or headaches during an attack. The cause of CVS is unknown but there seems to be a connection between Mitochondrial DNA and a history of migraines in the family. CVS is difficult to diagnose because there is no test for it and the symptoms are similar to the flu and many other gastrointestinal disorders. It is diagnosed by ruling out other reasons for the severe nausea and vomiting typical to CVS episodes. CVS sometimes disappears during adolescence but is replaced by migraines. During a CVS attack the person might need to be hospitalized with intravenous fluids to prevent dehydration. Many find relief with resting in a dark quiet room. Medication trials sometimes succeed in finding something to prevent, shorten or abort episodes. It is important to work with a physician who does his/her best to understand CVS and is supportive. For more information on Cyclic Vomiting Syndrome you can visit the Cyclic Vomiting Syndrome Assosciation at cvsaonline.org

I was diagnosed only 2 years ago but I have had CVS for my whole life. Many people with CVS are discriminated against because of lack of knowledge of medical professionals. They are seen as drug seekers or attention seekers. I have experienced this firsthand. I missed many days of school because of this. I had to quit sports because I was sick all the time. I lost some of my friends too because I never saw them at school and our relationships fell apart. My CVS has not transitioned into migraines but I have attacks less frequently and only require hospitalization at least once a year. If anything having this condition has made me appreciate every day I have that I am not sick. It also made me learn that in life when you have obstacles there is nothing you cannot overcome. I hope this post was informative.

You can Check out Josephine's awareness blog here

Thank you for reading
And Thank you Josephine for sharing your story
Take Care 
Jayne
xx


NHBPM - Day 26 – Monday, Nov. 26 - Part 1

 - Bonus Prompt: Raise awareness for another condition!

I will be posting two of these today to Raise awareness for two different conditions that people I talk to suffer from.

 Here is Zoe's Story.


"I'm Zoe and when I was 20 years old I was diagnosed with an autoimmune disease called rheumatoid arthritis (RA). This isn't like the 'arthritis' elderly people get, this is a disease where your body's immune system can no longer recognise what is part of the body and begins attacking itself. It mainly affects joints and their linings, as well as other tissues like the heart, lungs and eyes.

The symptoms I first began getting were painful ankles, wrists and elbows with swelling and overwhelming fatigue. I was sent from doctor to doctor who had no idea why this 20 year old girl was suddenly getting these symptoms and in so much pain she could barely walk! It was terrifying. When I finally reached a rheumatologist, he explained these are the most common symptoms of RA. I began treatment which included many different medications to help control symptoms and slow down the disease process. If the disease process isn't slowed down, potentially disabling joint deformities can form.

The main medication I'm on at the moment is prednisolone (a steroid), naproxen (an anti-inflammatory) and methotrexate (a DMARD), as well as strong painkillers. Steroids are usually great at controlling symptoms, but you just have to google them to see the many horrible side effects. The ones I deal with most are weight gain, always being warm and my bone density is decreased. As a young person with RA, my confidence is already knocked because I can no longer act like I used to, go out and have fun with my friends or perform well at uni. This is just worsened by losing any self esteem I had with the prednisolone weight gain.

However, the medication which impacts my life the most is methotrexate. DMARD means 'disease modifying anti-rheumatic drug'- it's exactly that, it's meant to slow down the disease process because it's a low dose chemotherapy drug which suppresses your immune system. So far I have had little relief with this drug and just experienced many of the side effects- for two days after the dose (you take it once a week) I feel exhausted, nauseous, occasionally vomit and I have little brain power and get easily confused. It also makes me very susceptible to illness- in the summer, a cold I caught quickly turned into bronchitis and nearly pneumonia.

So not only is my entire life being taken over by RA, it is also taken over by the medication and their side effects. The aim is to get into 'remission', although the likelihood of this is unknown. RA will always be a part of my life, I will always be on these tough medications and I will always have the fear of what it is doing to my body.

RA is a scary disease, especially as a young person with it. I can no longer act like a normal 21 year old. If I'm actually well enough to go out for the day, I have to have a day or two afterwards to recover. Despite this, and the fear of the future, I am determined to live my life to the full- as much as my body lets me. Yes I have days where I cry from the pain, but I also have days where it's bearable enough to see family or friends, or go to the movies, or take a walk in the park. I appreciate these days so much more since my diagnosis, I would much rather not have it, but there are always positives to come from every situation."

You can check out Zoe's blog here.
Thank you for reading
And Thank you to Zoe for sharing her Story
Take care
Jayne
xx

25 Nov 2012

NHBPM : Day 25 – Sunday, Nov. 25

How have your goals as a patient / advocate / person evolved?

When I first got ill and diagnosed with Fibromyalgia I thought that was it, my life was over. I was stuck in bed everyday in agonising pain not able to stay awake long enough to even try and function.

I went through endless trial and error with lots of different medication combinations and different doctors , my goal's for myself were just to survive each day.

I'd like to think now 10 months on my Fibromyalgia diagnosis and with a steady medication routine, that my goals for the days and my life have evolved in many ways. I can now see some time in the future with a job, I have accepted that at the moment I will not be able to go back into the hands-on childcare that I was in before my illness hit, but I have discovered different ways to get into childcare and all the different job roles I could do. I can see myself having friends again and a social life and I accept that I will not be able to do everything other people do, but then I can make the things I can do extra special.

Also as I learnt more and more about my condition, I gained a passion to raise awareness and hence this blog started. I have felt so much more human writing this blog, it creates own personal goals for me every week, and seeing all your comments and messages makes me realise I am doing something good even before I've left my bed.

Don't get me wrong I still have day's where I think my life is over, the pain is going to rule me and keep me from enjoying anything, but them day's pass and I remember that it's going to take small steps to get me back into the goals I originally had for myself a year ago.

On this note I took a baby step today and sent an application to do a voluntary role in my local library, working within a children's activity/craft group. I hope something good comes of it, and it gives me the leg up I need to get back into life as I once knew it.

Thank you for reading
Take Care
Jayne
xx 

NHBPM - Day 24 – Saturday, Nov. 24

Sorry Today's post got delayed to this morning due to exhaustion :-)

“If I had more than 24 hours in a day…” (Or unlimited spoons or funds)

  • go on holiday
  • go out with people I miss due to my fibromyalgia 
  • have a night out and dance and get drunk
  • eat whatever food I wanted
  • and spend the time to cook it from scratch
  • go for long walks and not have to worry about pain and exhaustion
  • do lot's of things for the people who look after me all the time
  • just show them that I am so thankful for them
  • go shopping!
  • go to unlimited number of gigs
  • basically just enjoy being alive, spend it with people I love and show them that I am 100% grateful for the things they do. 
Sorry for a short post, I'm not really one for fantasising how life could be, I  just try to appreciate and love the thing's I do actually have in life.

Thank you fro reading
Take care
Jayne
xx



23 Nov 2012

NHBPM - Day 23 – Friday, Nov. 23

What’s something your doctor taught you or you taught your doctor?

I am so lucky to have found my current doctor, first appointment was an emergency one with him and from then on he told me not to see any other doctor. He diagnosed me with Fibromyalgia and he was the one who referred me to the hospital. I am very thankful for him. He has taught me quite a lot about life and fibromyalgia to be honest. This is really just an appreciation post for my doctor.

He makes me feel comfortable as a patient and is understanding and listens to what I have to say. He makes jokes and makes the appointment less daunting .He has long conversations with me about fibromyalgia and how it is not recognised in the UK. He's  told me about his time as a doctor in South Africa and used his medical books from South Africa to help try and diagnose me and give me the correct medication. He's told me that I need to push myself when doing things, work through the pain to get my endorphins flowing as a natural painkiller/high.

  He is the perfect example of a good doctor when dealing with fibromyalgia.
He has taught me that there is good doctors out there who are understanding and generally decent people. 

Only a short post today as I wore myself out walking around in the sun early, enjoying the weather :-)

Thank you for reading
Take care 
Jayne
xx

22 Nov 2012

NHBPM : Day 22 – Thursday, Nov. 22

Happy Thanksgiving to all my American friends!

- Thanks Post. Write about what you’re thankful for!

I am thankful for 
  • My family and all the support they have given me throughout my illness and life
  • My dog's, their loyalty towards me and how much they make me smile
  • The health that I do have, I still have all my limbs, I can walk and think for myself.
  • My Boyfriend for making me unbelievably happy and for being constantly by my side on my good and bad days.
  • The on-line community I have found and am part of that keep me going and remind me that I am not alone through all this
  • Finding a good Doctor, and medication that works to keep me functioning to the best of my body's ability 
  • The NHS service 
  • and last but not least I am thankful for the strength I manage to find that gets me through everyday.
What are you Thankful for? Leave your comments below :-) 

Thank you for reading
Take care
Jayne
xx

21 Nov 2012

NHBPM : Day 21 – Wednesday, Nov. 21

Create a new technology related to health

I love technology and the way's it makes life so much easier, even more so when you have a chronic illness or health issues, apps on iphone and smart phones are getting better by the day!

I try to use the Wii Fit on a weekly basis as it is a great easy way to exercise, it is low level exercise. I tend to do the yoga the most, stretching out my muscles seems to ease my pain a bit and makes me much more flexible.

I think a new technology product I'd like is a game similar to the Wii fit type games, but one specifically designed for people with chronic pain .

One where you could pin point parts of the body that hurt that, and then the game would pick out some light exercises for the other parts of your body. That way you could still work out and it would accommodate for you specific needs that day.

Also it would recognise that you need time to do exercises, and let you choose levels of exercise that you feel up to doing. You could record your level of fatigue and it would also take that into consideration. It would praise you for however much exercise you manage it would encourage too.

I just really wish there was a Wii fit type game for people who have health issues or chronic illnesses. The amount of times I've tried to do an exercise on the Wii and had to stop half way through due to legs giving way/ too fatigued/ or just that the exercise is too long , and then the game tells you to 'try harder' and 'do better next time'. It's those moments that I wish that it would be able to consider the fact that my body is just not capable of doing things to a certain extent because of health issues.

I hope one day that someone thinks of something similar to accommodate to people with health issues who are trying to stay fit too. Keeping my fingers crossed!

Thank you for reading
Take care
Jayne
xx


NHBPM - Day 20 – Tuesday, Nov. 20

“A health moment I regret…”

This is going to be a short post because I am not completely with it today, coming down with a cold which I know is going to knock me sideways and I am so tired from unsettled sleep.

I think the thing closest to regret is those moments when I pretend I am fine. I hide from my family and friends that I am in pain and that I am scared. When I put off going off to the doctor's for a long time because just for a moment I want to feel like I am okay and my health isn't an issue. I just cast of all new symptoms as part of my fibromyalgia and never look into dealing with them. I cast all the pain and uncomfortable symptoms to the back of my mind and pretend that just for a day or two that I am okay.

I know this is wrong and I still do it sometimes, I put off taking medication, I cancel doctors appointments and I just for a while want to pretend that I am not in pain, that I haven't got fibromyalgia because it is too stressful to have a life with this condition.

Thank you for reading
Take care
Jayne
xx

19 Nov 2012

NHBPM - Day 19 – Monday, Nov. 19

Write about: Life and Death

Being only 20 years old and choosing to the 'Write about life and death' prompt may seem a little morbid, but I want to try and give it a go at tackling a tough topic of conversation. This post has taken me a lot of guts to write, but I believe that it is something to share and not to be ashamed of.

I feel that in the last couple of years dealing with never ending health issues and being diagnosed with a Chronic condition, that I have learnt a lot about emotions and have thought a lot about life and also death from time to time. 

When I left college two years ago and got rejected from my chosen University, I fell into a dull year of nothing, I would get up not knowing where my life was going. I couldn't find a career path I wanted to pursue, and nothing that I had a passion about. I was low and definitely depressed, I started thinking that because my life was going nowhere, why should it continue? By this time I was a year clear of self harm and as much as I thought about doing some unthinkable things, I managed to fight the thoughts off knowing that I was doing so well, though I still continued feeling like I had no where to go in life.

Then last summer I got a job as a nursery nurse, I was unsure at first cause I had never been around younger children but I went for it thinking, what's the worse that could happen? I got stuck right into my job and adored how rewarding the work was. It was a job I believe I was made for. I was possibly the happiest I had ever been. I loved life, I felt like my life was going somewhere, I could see a future. I could notice all my bad thoughts slowly disappearing , and I passed over two years without causing myself harm. I was truly happy!

Then September last year I was hit with an extreme throat infection, and from then on I got more ill by the day. I kept having day's off work sick, uncountable number of doctors visits, and they could find nothing wrong with me. Then a week after Christmas my body gave in and I fell down the stairs one morning before work, I was then signed off work sick by a doctor and had suspected Fibromyalgia , that was later officially diagnosed in February 2012. Weeks turned into months, continuously being signed off work, and trying out so many combinations of medication.
    I felt myself slipping down again, I now couldn't do the job I loved so much, the thing I saw myself doing for the rest of my life has been taking away from me. I hit low's like never before, I hated myself and didn't want to continue on any more as I just couldn't see my life going anywhere. After 10 months off sick I had to officially leave my job role. 

Now I am still looking for work, and fighting against the benefit system. I still have my bad days, the day's where I wish I just wouldn't wake up one morning and for it all to be over, but I can have good day's still day's where I have a little bit of motivation, day's where I remind myself that even though my life has pretty much been taken from me, things will get better and I will fight through it all and see many more day's to come.

From this post I just want to say that when you are dealing with a chronic illness and health issues, you may often just wish for it all to end, for the pain to be taken from you, and even to not have to face another day. But even though I am not a religious person I believe that everyone has a reason to be on this planet , and even through those horrible, crippling bad day's, keep fighting for those good day's, remeber them day's that made you happy , the day's that make life worth living

Thank you for reading.
Take Care
Jayne
xx

18 Nov 2012

NHBPM - Day 18 – Sunday, Nov. 18

Write about your advice for someone caring for a patient with your condition


For this prompt and day's post I asked Ben my boyfriend to give me a few bullet points, that I am going to expand on, of advice that he would give to a carer or someone just looking after a Chronically ill person or someone with health issues.
  • Be Supportive : This one kind of goes without saying, but when you are looking after a sick person you just need to remember to be supportive, if that means being by their side when they are in pain or even just giving them a phone call every now and then and letting them rant for a bit. From a chronically ill person's view, just knowing that I have someone there for me to fall back on, takes a whole lot off my mind.
  • Listen and try to be understanding : Although you may never know how the person you care about is really going through, listening too them ramble and talk about how they are feeling/ the latest medication change or a doctors appointment will help them so much. Plus you can take that time to try to understand what it is like to be in their shoes, try to learn a little bit what their illness is doing too them, that way you will be able to care about them more effectively and know how and what to do for them to make their lives that little bit better. 
  • Don't expect too much : This point and the next one tie in together I think so sorry if I repeat myself. I think what Ben was aiming for with this point is that you should try to understand that the person you are taking care of can, not in a mean way, but can be unreliable, they don't know if they are going to wake up the next day with high or low pain levels, so plans and event's may have to be given a miss at short notice from time to time.
  • Don't get too upset if plans get cancelled at short notice / allow days in bed : This ties in with the last point. Plans will get cancelled at short notice when you are chronically ill or caring for a chronically ill person. Don't make them feel bad about the fact that the day has been cancelled or cut short because of their pain level's, cause chances are they feel absolutely awful about it being cancelled too. Just remind them and yourself that there will be plenty of other opportunities to do things and have day's out, it's not the end of the world. Allow them to spend day's in bed and recover as much as they can, maybe turn it into a duvet day and get some snacks and watch lots of films and take that cancelled plan's time as time to spend time together. 
  • Learn about the illness yourself : This I think is an important one, it meant the world to be when I found out Ben had done some research himself  With having Fibromyalgia, I didn't even know what it was, so Ben would have had no idea (like most people, unless you know someone who suffers from it). So him going out his way to read up what my body was doing and the way it affected me made life SO much better, it meant he knew what things to do for me and ways to help me out on bad days, because he knew what I was going through, to some extent.
  • Remind them to take medication : This is an ongoing thing with me and Ben, because due to my bad memory and 'Brain fog' from my Fibromyalgia, I always forget to take my medication or forgot if I've taking them. So it's just a little thing but reminding them of these little things can help them so much to do things.
  • Be willing to go to Doctor's and support groups with them : Being there for them to support them at doctors appointments, even ringing up to make appointments for them. Researching up local support groups is a wonderful thing to do, to help them get support from other people, for them moments that you can not be there for them. They will be scared and nervous about going to support groups the first few times, so going along with them to the meetings is a huge help to them, and also a lot of support groups offers support and help for friends/family and people who care for people with Chronic illnesses, so you yourself could get a lot information and support too!
I hope this has given you some help and advice for people who care for and people who have chronic illnesses and health issues. All people who care for a sick person are amazing and patient people, and I am 100% grateful for everything that Ben does for me, He is an amazing boyfriend and looks after me so well.

Thank you for reading
Take care
Jayne
xx



17 Nov 2012

NHBPM - Day 17 – Saturday, Nov. 17

Not sure how I am going to do on this post, but I am going to try to be positive about it! :-)

My strengths and weaknesses list post: 

Strengths: 
  • I am caring towards anyone and everyone 
  • I try to be there for people, even when I am struggling myself 
  • I can put on a brave face in any situation 
  • I always try to keep going 
  • I'm an animal lover 
  • I like love how I look and take care of my body 
  • I am always grateful for the things I have 
  • and grateful for all the people in my life. 


Weaknesses:
  • I am very stubborn 
  • I don't follow my own advice (who does though!) 
  • I hide away my feelings and always pretend I am fine 
  • I care too much 
  • I have NO self control when it comes to shopping! :-P 


That's all I am going to list today I think, trying not to be too hard on myself! I am happy that I have more strengths than weaknesses, being positive is going to be the way forward from now on!

Love yourself and treat yourself from time to time :-)

Thank you for reading
Take care,
Jayne
xx





16 Nov 2012

NHBPM - Day 16 – Friday, Nov. 16


Use a picture or video to inspire a post:


This is the punk/folk rock singer and song writer Frank Turner.He is by far my favourite musician, and his lyrics and songs have got me through all my rough times (I highly recommend you check him out!!). To be honest I could have picked any video's of his songs but this is one of his new, unreleased songs called 'Recovery'. And from the moment I heard it I fell in love it and the lyrics scream out to me so much.

Although I know I will probably never truly recover from my illness and all it throws at me, this song reminds me that people are there for me to reach out too and to drag me along the road to some kind of content recovery.

It is very hard to write about how this song sticks out to me but it one of the most meaningful songs for me, including 'I am Disappeared'.

But it is just another reminder to myself and whoever reads this that music can be a huge inspiration to you, and can just remind you of all the meaningful and positive things you may have forgotten amongst all the pain and grief caused by Chronic illness and health issues.

Sorry this has been a short post, having a rough day with pain levels.

Thank you for reading
Jayne 
xx

15 Nov 2012

NHBPM - Day 15 – Thursday, Nov. 15 : Not Prompts but PETS!!

I've decided today again to not use the prompts that were listed for today, a) because I can't really relate to them , B) because I don't have enough experience as a Health blogger to write a good enough post about them and C) because I want to talk about how my pets get me through the days!

- Warning-  exceptionally cute puppy photo's will be included in this post! 

So here are my two babies, both Jack Russell Terrier's (well mixed ha).

First we have my youngest,Shelby . She is 6 years old but acts about 2! She sleeps a lot and is very timid. You will ALWAYS find her curled up asleep somewhere.




Then we have my little Man, Billy. He is 12/13 years old and although he has his mad puppy moment's, these day's he definitely likes a good old sleep and a snuggle!



     

These two definitely keep me going, since I've been pretty much house bound and out of work for 11 months now, my dogs keep me sane (and drive me insane sometimes). Every morning when my mum gets up for work they both come and snuggle in bed with me, Billy sleeps right next to my pillow and Shelby usually sleeps on my legs. I don't know how, but they definitely sense that I am ill and in pain and cause of that, they are constantly by my side (Shelby is asleep next to me right now). I am so close too these two, they are my friends I don't care how stupid that sounds. If you've never had pets it is hard to understand how much of a role they play in your life (and even more so when you are sick).


He also loves to snuggle up to my hot bottle too and steal the heat!
I get scared and worried these day's because Billy is getting old and has problems with his legs and has random spasms some days, I have got so close to him since being home all the time. I  look after him and in return he looks after me he comes to me for cuddles and I go to him.  He (and Shelby) is the most loyal dog and I am going to be lost without him when he finally goes (hate to think about it).

So that's my darlings, they keep me going, they make me smile, I am cuddle them when I am sad and they show me so much affection.

He's even there when I'm drying my hair to make sure I'm okay!

And a final one of them in the Christmas spirit! 

Thank you for reading.
Jayne
xx



14 Nov 2012

NHBPM - Day 14 - 30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

30 THINGS MEME from here

1. The illness I live with is: Fibromyalgia , vitamin D deficiency and all the symptoms that comes with it.

2. I was diagnosed with it in the year: february 2012

3. But I had symptoms since: a few years, but severe symptoms since September 2011

4. The biggest adjustment I’ve had to make is: leaving my job and the way I live all aspects of my life.

5. Most people assume: that because I don't look sick I am well, and that because I am having a good day, means I am better.

6. The hardest part about mornings are: waking up with migraines and my whole body being stiff and sore.

7. My favorite medical TV show is: House md, only on season 6 but I adore it.

8. A gadget I couldn’t live without is: probably my ipod , phone and laptop to keep me sane and connected to people.

9. The hardest part about nights are: not being able to fall asleep, laying awake in pain and aching joints.

10. Each day I take __ pills & vitamins: I take 600g (4) Pregabalin, 1 vitamin D supplement, 20g (2) Amitriptyline 

11. Regarding alternative treatments : I don't know if yoga comes under alternative treatments but it does help to relax me and loosen up all my aches a little.

12. If I had to choose between an invisible illness or visible I would choose: Visible because people can at least see the issue and pain. 

13. Regarding working and career: I had to leave the job as a nursery assistant (that I adored) as I am not fit enough , nor have the energy to do the job any more

14. People would be surprised to know: I'm not sure there is anything, apart from I am in constant pain even if I look well, I am good at putting on the brave face,.

15. The hardest thing to accept about my new reality has been: losing my job and seeing how much my life has changed because of my Fibro.

16. Something I never thought I could do with my illness that I did was: yoga, go on bike rides and read lots!

17. The commercials about my illness: there are no commercials in the UK about Fibromyalgia, it is in no way well known.

18. Something I really miss doing since I was diagnosed is: going out when I want too, not having to plan things in advanced to accommodate my broken body.

19. It was really hard to have to give up: my job , it broke my heart. 

20. A new hobby I have taken up since my diagnosis is: yoga, and reading, also blogging!

21. If I could have one day of feeling normal again I would: Just be spontaneous and do things I want too.

22. My illness has taught me: that I am strong

23. Want to know a secret? One thing people say that gets under my skin is: 'but you don't look ill' , 'Why don't you just get a job'

24. But I love it when people: listen too me and try to understand what I am going through,

25. My favorite motto, scripture, quote that gets me through tough times is: strangely from a Rolling stones song: "You can’t always get what you want, but if you try sometimes well you just might find, you get what you need” 

26. When someone is diagnosed I’d like to tell them: to learn all you can about your illness and listen to your body.

27. Something that has surprised me about living with an illness is:  how passionate I am about raising awareness

28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend took me away for my birthday weekend without telling me, and also kind messages and gifts from family and people I've met online.

29. I’m involved with Invisible Illness Week because: I want to raise awareness as much as possible

30. The fact that you read this list makes me feel: happy that you have listened too me and hopefully you may have learnt a little too. 

Thank you for reading.
Jayne
xx

13 Nov 2012

NHBPM : Day 13 - Tuesday, Nov. 13

Book report. What’s your favourite book and how can you tie it to your health or life?

I was unsure which book to choose that related to my health so I have gone for the one that sticks out most to my life in some ways.



The perks of being a wallflower:

I have always seen myself to be one of those people who always sits on the edge of life and watch other people experience things and try things out, I didn't know of the term 'Wallflower' until recently reading this book.

 I felt myself relate to Charlie's character greatly in the way that he is such a shy, observant person, noticing all the small things about people and wanting to do special things for them all the while. Also the way in which he seems to look up too and idolise people close to him. The way in which he over thinks things, without acting on them to see what the result would actually be.

  Also the character of Bill, who is Charlie's English tutor sticks out to me a lot, as I had a teacher who helped me get through a lot of things in the time that I knew him and also to this day I still think how he taught me too and still try to see life through the way he taught me. My tutor acted in the way in which Bill does for Charlie guiding him and looking out for him through all the troubles he faces throughout high school.

I'm not going to give away the greatness of this book's story but I am going to include some paragraphs from 'Perks of being a Wallflower', that really stood out too me and I believe they can help me live my life and mean something too me.

"It's just that sometimes people use thought to not participate in life"
"Is that bad?"
"yes"
"I think I participate, though. Don't you think I am?"
"Well are you dancing at these dances?"

"I would die for you, but I won't live for you"
"Something like that. I think the idea is that every person has to live for his or her own life, and then make the choice to share it with other people. Maybe that is what makes people 'participate'. I'm not really certain."

"So, I guess we are who we are for a lot of reasons. And maybe we'll never know most of them. But even if we don't have the power to choose where we come from, we can still choose where we go from there. We can still do things. And we can try to feel okay about them"

"Maybe it's good to put some things in perspective, but sometimes I think that the only perspective is to really be there"

Those quotes mean a lot to me and they help me to keep going. The book as a whole is truly amazing and I would recommend it anyone and everybody. The film that has recently been released is amazing too and captures the book perfectly but I would still recommend that people take the time to read the book.

This book will always hold a close place to my heart, it reaches out to me in many ways and most of all it reminds me to keep going with life, and try to participate as much as possible

Thank you for reading.
Feel free to leave any book recommendations of your own, I love to read new books!
Take care
Jayne
xx

12 Nov 2012

NHBPM : Day 12 – Monday, Nov. 12


Call BS on something. What’s something that is just ridiculous?

I'm going to attempt to tackle the good old sayings that anyone with a chronic illness or an invisible illness dread to hear, which I think are summed up well in the image below.


Can I just pin this to my forehead?!
(I am unsure of the original source of this image unfortunately)
Don't get me wrong I understand that it is not easy to know what to say to people who are constantly in a battle against chronic illnesses, which will not rub them up the wrong way. I think to figure out the best way to ask how people are that day, is just to literally ask:

'How are you doing/holding up today?'
'What are you able to do today / what do you feel capable of doing today?'
'Would you like some help with housework/groceries/going out/etc.'

A way of learning to understand, a day in the life of a chronically ill person is to read 'The Spoon Theory' . It is a fantastic way to get in insight into how everyday tasks can affect ill health people differently to most people. If the chronically ill person is aware of The Spoon Theory (if not show it to them!), you will learn to understand why we refer to ourselves as 'Spoonies' and you could then ask them 'how many spoons they have today?', and learn to help them out more using that way of understanding. 

I have gotten a bit off topic in this post today, But I am keen to share the Spoon theory to people who are not aware of it, and I hope that some how I have gotten some kind of message across about things chronically ill people do and don't want to hear or be asked.

Thank you for reading 
Take care
Jayne
xx



NHBPM : Day 11 – Sunday, Nov. 11



I took Day 10 - Saturday, Nov 10th as my first 'Get Out Of Post Free' Day's, as I spent the whole day Christmas shopping with my mum and due to exhaustion and lack of internet I am only just getting round to writing up yesterday's (day 11) post, But I am back!

Write about your favourite thing that is not health-related but likely improves your life:

I decided to choose one 'material' type thing and then a non-material type 'favourite thing, that is not health related.

So I'm going to start with my material favourite item and that has to me my beauty products , because on the day's that I am able too, I love to pamper myself, even if it is just being able to have a wash and put on a little bit or make up or having a long soak in the bath with all my favourite beauty products.
  I never used to be one to want to even bother looking down the beauty aisle's in shops, but now I spend hours looking at beauty products, researching and reading reviews and also my new favourite thing is to sit and watch beauty Vblogs and YouTube video's. I just feel now that even on the worst day's when I am fighting against my health putting on a bit of make-up can give you the confidence the the mood boost you need in able to function that day, it just makes me feel nice and happy, and for that reason I believe it improves my life, cause who doesn't like a little bit of a pick me up and feel good!

Then I think my less material favourite thing that improves my life on a day to day basis, is music! Music means so much to me, there is not a minute where I am not listening to music or humming a song. Music holds so much for me, it can stir so many emotions inside a person. It has the ability to give people the release and escape they need from everyday life, to express themselves through lyrics. I just feel very strongly about music and the hundreds of  memories that 3 minutes of lyrics and the music itself can bring. I listen to music to make me happy, to remind me of good times, to remind me of all the tough things in life I have been through and survived through, reminds me of all the people I have met and who have made an impact on my life in many ways. I am just very grateful for all the music I ever heard that I can listen to again to help me remember that I'm never really alone.

So they are my two favourite things that I believe improve my life by helping me feel better and happy.
Thank you for reading
Jayne
xx


9 Nov 2012

NHBPM - Day 9 – Friday, Nov. 9


Community Care Package. Create the perfect care package for your members or fellow patients:

I've just gone round my room and collected the things that help me get through the days.


 The First thing in the 'care package' is heat pads,hand and knee supports, bandages and ibuprofen gel . This I think are a must! I would not be able to get through the day's without having my heat packs and the gel to soothe my joints and pain. Especially now the weather is getting much colder, I will swear by all these things to help me through the days.


The next is medication, which I think goes without saying. These pills keep my pain at bay, they keep me sane and my supplements help my body get what it needs. Finding the medication combination (finally) that works for my body has been a godsend and I am dreading the day that they stop helping as much as they do and I have to go again on the hunt for another combination that works.









Having a Journal to hand is another good thing, to record any new symptoms, idea's, and any thoughts before fibro fog makes you forget! Making lists is a brilliant way to remember things and to be able to sort out the thoughts in your head on a groggy day when your brain feels like mush!







A nice warm comfortable pretty bed, cause lets be honest I spend a lot of my time sleeping, sitting in or on it during the days. being comfortable and kind to your aching body with lots of cushions. Also a warm puppy helps too :-)

Whilst it is in the photo, my laptop is my way of distracting myself from the pain and also an amazing way to communicate with people, and also meeting new people who are also going through the same things as you. Without my laptop and the internet I think I would go crazy without talking to people on-line!

Whilst I'm talking about my bed, Cuddly toys, cushions and hot water bottles are a must! I snuggle up with all these things every night, putting hot water bottles on my sore points to ease the pain helps you to get comfortable and with falling asleep too. No matter how old you are a cuddle with a teddy always makes you feel better, especially for those moments when there is no one else around to cuddle! They always bring a smile to my face on my bad days.


 Since having Fibromyalgia and having a lot of time on my hands I have started to read a lot more and have gotten through so many books. So that is why I would include Books into my care package. They let you escape the real world for a little while and help you to use your imagination. Keeping focused in a good book helps to distract you from pain and aches.


 Music is a must too, there is not a day or a moment when I am not listening to music. Music to make you happy when you feel at your worst. Music to relax you and help you fall asleep. Music to maybe have a little cry too when life's weight is on your shoulders. Music can affects your emotions and make you happy when you're sad. Music also can carry a lot of memories in the lyrics and remind you of all the good times you've had.





 Having flowers or plants in your room instantly bring colour and cheer to the room and your mood. I adore my peace lily and love having it in my room and also it helps to purify the air around my room. Receiving flowers or even going out and buying yourself some is a fantastic idea to bring colour and cheer to your days.
DVD's and TV is a good idea for those long days in bed or in the house, especially rainy days watching a good film whist snuggled on the sofa. Whether you enjoying a heart wrenching love story or a comedians stand up show, television is a fantastic way to spend your time, giving yourself a break from focusing on the pain and aches.











Last but not least, one of the most important things to keep close or in your care package is memories, and letters of kind words from people in your life. Surround yourself with all the things that make you happy, and , things that make you laugh. Remember that even if you are having a bad day, soon you will have a good one, you will do things that make you happy and you will keep making unforgettable memories to some day look back on.


Thank you for reading, and I hope I have given people some idea's on way's to keep you going through whatever health issue you are fighting against.
xx








8 Nov 2012

NHBPM - Day 8 – Thursday, Nov. 8


Write a letter to your health:

Dear Fibromyalgia and the body you have consumed,

I wake up everyday to be greeted by you in one way or another, I'm not sure when you first started visiting me, but I know when you decided to use my body as your home. I know I have always been that person who is constantly ill, got a cough a cold, or an ache somewhere, was that you for all them years?
 
 It was just over a year ago when you decided to set up a home in this small fragile body. You took a young woman, only just turned nineteen, she had found a job she adored working with children, she had friends and life was good for her, you took that from her!
  She is now a fragile 20 year old with no job, and no friends, you have stopped her living her life. She is scared now, she doesn't know how she gets through each day, she is constantly in pain, popping all these pain pills in the hope she will be able to just feel human long enough to try and be happy. This girl is now scared to leave the house, people look at her ,staring at her walking stick and the way she slowly moves around. People don't understand her, people don't understand what you do to her, you consume her body and her mind.
   You have taken so much from this woman, and replaced it with pain, aches, depression, anxiety and now she is left to fend for her life. She has to fight you every single day just to do simple tasks and to be able to function.

I am that scared  young fragile woman, but I am angry at you, I resent having you taking over my life, taking all the happiness from me for reasons I don't understand. I am going to fight you everyday to have what I deserve. You can keep trying to ruin me but you will not win!

From,
A determined scared woman fighting for her body and life back!

7 Nov 2012

NHBPM - Day 7 – Wednesday, Nov. 7

Redesign a doctor’s office or hospital room

Having spent a lot of time in a doctors surgery and waiting rooms I thought I'd share some ways in which I would improve the services. I apologise if this becomes a bit of a rant, had a few issues with my doctors surgery recently.
  • Bright colours and updated awareness posters! -  My doctors surgery is so dull, all dark mahogany wood and dull coloured walls with old faded posters that are very outdated. I think a drop of colour and a some new awareness posters and notices would help greatly as there is nothing more depressing than sitting in a dark dingy depressing waiting room. 
  • Music playing in waiting rooms - even if it is just the local radio station. Sitting in silence whist being nervous and anxious about your appointment, some music would help to relax you, therefore making you feel more grounded ready for your appointment.
  • Friendly,caring and helpful receptionists - I don't know if this is just me and my surgery or an overall thing people have found. I can not stand how I can get treated and spoken too over the phone or in person by a receptionist who makes me feel like I am wasting their time with their snotty attitude. They couldn't care less about the patients needs and finding ways to help them. A friendly receptionist should be on the end of the phone ready to help and advise. The amount of times I have found my self avoiding making appointments for symptoms because of the way I feel I am treated over the phone or at the receptionist desk.
  • Easy appointment booking service - I want to be able to make an appointment easily in advance for routine check ups, or an emergency one on the day if needed. I don't want to have to worry about speaking to a receptionist, having to tell them why I need an appointment,  who is then going to get the doctor to ring me back over 2 hours later to then decide if I am 'worthy' of an appointment or a check up. I want to be able to know I can make an appointment that is convenient to me and my schedule.
So that is some way's in which I think Doctors Surgeries could be changed to be made a bit more user friendly.
Leave comments letting me know what you would change, I'd love to know? 
Thank you for reading