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23 Apr 2013

HAWMC Day 23 – Technology

 
“I wish this gizmo could track my condition!” Write about which device, application, program, etc. you wish helped to track your health.

I've written something like this before and I spoke about how I would love there to be a game simular to the Wii Fit to help us chronically ill exercise, one that would accomidate to us and our body issues. You can check out that post here .

  Write about how your life would change if there was no social media. Today’s post was recommended by Christina of www.stickwithitsugar.com

Some day's I wish that some social networking didn't exist because of negative words and bitchy things said on them and also all the grief you can get from them. This thought has changed a lot since becoming ill, I got rid of a lot of people who were making it a negative experience. Since then I find myself falling more in love with social media and networks by the day. There is so a fantastic advantage to it all, the communitiy of people you can build and the endless oportunities to connect with so many different types of people. 

Without Social media and networking I would feel lost, of course I could survive and it wouldn't be the end of the word but to start with I would feel a bit lost because it is second nature to me now. All in all I think without social media I would feel very alone and isolated from the world because it is what makes me connect with others in the same position as I am.

Take care, Jayne xx
Thank you for checking my blog out

Don't forget to check out my Facebook Support Page, Twitter and Tumblr too for daily updates.
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22 Apr 2013

HAWMC Day 22 - Day to Day, Couldn't live without you


 
Write about the things you couldn’t live without – list 10 things you need or love most. 
  • My Dogs - puppy therapy is one of the best things and my dogs are so loyal it's hard to find a day when they are not by my side making sure I'm okay. They always make me smile and I would be truly lost without them
  • Music - I am always without a doubt listening to music and I am a true believer in the fact that music can change your mood, it can make you happy, it can make you sad , it brings back memories you thought you'd forgotten. My passion for music is one of my biggest passions.
  • My medication - It's probably an obvious one, but since I got my medication combination sorted nearly a year ago I got my life back, of course I still have flare up's and bad days. But overall I believe that my medication has given me so much back and it gives me the ability to live and not just merely survive. 
  •  Make up - okay I could live without Make up , but there is something about doing my make up and it making me feel a lot better about myself. On the day's I do my make up I feel that little bit more normal, I finally understand it being a bit of a mask to hide behind, though mine just hides my illness and bring out the true me.  
  • Social networking - Before becoming ill I never realised the true advantage of social networking, connecting and finding other people who are going through the same as you. Like most people when I was first diagnosed with a chronic illness I was scared and felt so isolated from the world, but once I branched out and looked online I found the most amazing communities of people in the same position as me. Thank you all for being there and being so incredible.
Moving onto people because I can't think of many more material items
  •   My Parent's - I really don't know where I would be without my Mum and Dad. They have been so supporting throughout everything, even when they give me that 'tough love'. They always have the best intentions for me and they are truly amazing and the best parent's I could ask for.
  • My Brother - Although he wasn't around when I first got diagnosed he always knows how to make me smile with his stupid sense of humor and he looks after me, and always makes sure I'm okay.
  • My Boyfriend - He knew me before I got really ill and I can't imagine what it was like to see the woman he loves go from healthy to having to care for me and look after me. I don't know how he does it, he is always there for me weather it's getting a drink for me or taking me to the emergency room and sticking by my side. I could never show him enough how thankful I am for him.
  • The Friends who stuck around - although I could count this list on one hand I am so grateful to those few who are still there for me. I don't see any of them as much as I would like too but we text and chat on a regular basis and I would be lost without having them to rant and ramble too during my bad days, they know who they are :-)
What are things that your are thankful for / can't live without?
Take care, Jayne xx
Thank you for checking my blog out

Don't forget to check out my Facebook Support Page, Twitter and Tumblr too for daily updates.
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21 Apr 2013

Little Sunday things


Just thought today that I would share a few little things that
 made my Sunday.

The weekly refill of my pill box 

 
Frank Turner's new Album and vinyl 
 
 
Cleaning my Make up brushes

 And now to curl up with a new book and a cup of tea

How do you spend your Sunday's are they relaxed or busy seeing family?
Take care, Jayne xx
Thank you for checking my blog out

Don't forget to check out my Facebook Support Page, Twitter and Tumblr too for daily updates.
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20 Apr 2013

HAWMC Day 20


Today I had a rough day so I don't really feel up to writing about my burnout's and how I deal with them, so today's post is going to be a list of all the things I am thankful for or that have made me smile recently.

  1. Quiet evenings in 
  2. Cups of tea
  3. Cuddles with my dogs
  4. Buying the vinyl record I have been lusting after
  5. Singing at the top of my voice
  6. My boyfriend
  7. Peanut butter on toast 
  8. Strong Coffee
  9. Getting over my burnout today
  10. Sunshine finally arriving
Just a short post, but I needed to take sometime to look at the positive things.
Take care, Jayne xx
Thank you for checking my blog out

Don't forget to check out my Facebook Support Page, Twitter and Tumblr too for daily updates.
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19 Apr 2013

HAWMC Day 19 – Vintage


Post a vintage photo of yourself, with a captain about the photo and where you were in terms of your health condition.

First I want to apologise for not being around most of this week, either I have been uninspired by the prompts or the main reason is that I have been at work! I have had the busiest week in a long time and I've worked 3 shifts and sorted out paperwork for another job too.

Since I have only been ill for a couple of years I don't have many 'vintage' photo's but I thought I'd find out some photo's of me with my cane covering all the time I have had Fibromyalgia. So here is a handful of photo's of me since I've had my stick and Fibromyalgia.






                                                                
Take care, Jayne xx
Thank you for checking my blog out

Don't forget to check out my Facebook Support Page, Twitter and Tumblr too for daily updates.
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15 Apr 2013

HAWMC Day 15 – Sharing


Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.

Sorry for no appearance yesterday I am fighting a really bad fatigue, nausea and headache flare up which personally at the moment I think is more disabling than a pain flare up as I am unable to think straight let alone get up and move. So I've actually spent the last 3-4 day's in bed unable to do anything.

Anyway enough about me, now I've got to talk about a woman who has been inspiring me so much recently despite her being in really bad pain at the moment she has been there for her community and her last two video's have been truly amazing and have really hit home with me.

Of course I am talking about Kelly Fricke (@sickgirldiary), this is her lastest video and my comment that was posted up this morning. A raw view of life with pain with the beautiful message and reminder that it is okay, to not be okay. 



And I'll leave you with one of her newst video's which has really spoken to me 'Stop comparing yourself to others', She really is an inspiration!


Kelly's links
Facebook Support Page: Facebook.com/FindingStrengthThroughPain
Etsy shop: Etsy.com/Shop/HandfulOfHope
Instagram: its_Kellaaay
Twitter: SickGirlDiary
Blog: Sickgirldiary.Tumblr.com

you should really go check this wonderful woman out
Take care, Jayne xx
Thank you for checking my blog out

Don't forget to check out my Facebook Support Page, Twitter and Tumblr too for daily updates.
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14 Apr 2013

HAWMC Day 13 –Haiku




Write a health acrostic for your condition, hashtag, or username!

Crippling pain
Hours stuck in bed
Raging headaches
Overwhelmed
Never ending fatigue
Isolation
Chest pains

Pain, burning, stabbing, never ending pain
Agonizing muscle spasms
Intense headaches
Never give up!

Take care, Jayne xx
Thank you for checking my blog out

Don't forget to check out my Facebook Support Page, Twitter and Tumblr too for daily updates.
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12 Apr 2013

HAWMC Day 12 – Hindsight



If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say? Today’s post was recommended by Christina of www.stickwithitsugar.com

When I first read this prompt I loved it and had some great things to say but now it's come to writing it my mind has gone blank, but that's always the way.

Things I would say to myself on the day I was Diagnosed with Fibromyalgia is :

  • It's okay to be scared, angry and sad. Being told that you are going to be ill and in pain for the rest of your life when you are 19 is a very emotional thing and it is okay to feel and think all those things, don't bottle them up.
  • Talk to the people around you , you have a very supportive caring family and boyfriend who have been there for you through tout it all already, so talk to them and tell them things. Remember they are struggling right now too with all this so they will want to talk to you too, let them know that it's okay to talk.
  • YOU ARE NOT ALONE - When I was first diagnosed I believed that I was the only person to be going through this hell. So I would tell myself to do research, reach out to people. I learned quickly to use social networking, forums and blogs to find other people in similar positions to me. You will find others to talk to, look for a support group in your area, look for blogs, organisations and  forums and use them to help and benefit you.
  •  Things will be hard to admit and there will most likely be changes in your life that you're going to have to face. There are ways around the things that you need to change and over time you will see how you can still have a good time and a good life. 
  • Your life isn't over just because you're ill. Just over a year ago when I was diagnosed I was devastated and I thought that's it my life is over, I lost my job, my friends, my independence and more but I didn't think that I would have the things I have today. You can get a lot of your Chronic illness and pain and your life can still be amazing and, You can still be happy and proud of things you achieve.
Let me know below what you would say to yourself when you were diagnosed? 

Take care, Jayne xx

 Thank you for checking my blog out

Don't forget to check out my Facebook Support Page, Twitter and Tumblr too for daily updates
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11 Apr 2013

HAWMC Day 11 – Favorites





Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why? 

After having Twitter, Facebook, Tumblr and Pinterest for Chronically Crafty I have definately noticed which ones I use more than other and also which ones I tend to have conversations on too, though they all have different perks and different uses.

Twitter I think is my favorite for interactions, I can connect with so many different people at once. I have met some of my favorite people through twitter and have had some great advice and discussions with people too. The only downside with twitter is the 140 character limit though at times this can be helpful because it's an easy quick way to get out how your feeling or an opinion without writing loads, and it's a quick way to get answers and find out things. Not to mention the tweet chat's which are fantastic to talk about things and have set topics too.

My Facebook and Tumblr are perfect for getting information out there, articles , opinions and also inspirations photo's and illustrations. I tend to update daily on these and I also love having an inbox on both that allows people to get in contact with me and easily ask for advice confidentially. I find Facebook and Tumblr second nature to use and their layouts are easy and quick to learn to use, they are just so effortless.
Where as I really struggle with updating my Pinterest, I've had an account for months but don't find myself pinning things too often. I don't know why I can't get on with that site, I can find myself on it for hours looking through other peoples pins and finding great tips and advice but I don't seem to pin things myself. I just can not get into the habbit of pinning daily, one week I can be on it for days on end then I will have months where I don't even get round to loading the page. 
If anyone has any tips on getting into Pinterest I would love to hear them, as I know what a useful site it can be.

Thank you for reading, 
let me know in the comment's your favorite social network, and feel free to leave your links below for me to check out too :-)

Jayne xx
 

10 Apr 2013

9 Apr 2013

HAWMC Day 9 – Caregiving


Patients, what advice or tips do you have for caregivers out there – professional or otherwise!

This was written a while ago with help from my lovely Boyfriend who although I do not assosiate him as having a caregivers role, he is the most supportive and caring person . So we came together and made a few bullet points of advice for partners and caregivers.

  • 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 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
                                                                Thank you for reading
                                                                           Jayne
                                                                             xx




7 Apr 2013

HAWMC Day 7 – Sensationalize!


Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

Today's prompt is a hard one for me because about a month or two after I was diagnosed with Fibromyalgia, any headline or article I saw that read 'Top five ways to cure Fibromyalgia' or 'take 'this' supplement or only eat these foods to cure Fibromyalgia' I just ignored and I didn't even bother reading because I knew they were a huge waste of time, but I thought I'd give it a go.

I know the most popular one you  hear which is 'Use exercise to cure your chronic pain' and you get endless articles, books and websites telling you about how this person's life was ruined and they succeeded at nothing with their chronic pain and then they 'discovered' exercise and all their problems were cured. And we all know that, that is a load of BS! We all know that what little exercise we are able to do is good for our health and body but with chronic pain we all know that although we may be able to exercise, it will cause us pain and we will need more time to recover, it is not going to magically cure everything.

All these headlines you hear are stupid, but the thing that makes me feel worse is that a lot of people who don't have chronic pain believe them and think that they 'know' that they work and as a result they are telling us to live like that and giving us absurd ways to 'cure' our pain.

I remember when I was first told that I might have Fibromyalgia I Googled it like anyone would, and I remember having to go through pages and pages of links to how people cured their selves before I began to found proper webpages that offered the real advice that the newly diagnosed should see on how to manage chronic pain rather than 'cure' it.

So in a way I guess those headlines made me want to start making this blog because I wanted to be able to make it easier for people suffering with chronic pain to find websites that were real life experiences rather than all these websites of 'cures.

Thank you for reading.
Jayne 
xx


6 Apr 2013

HAWMC Day 6 – Letters


 Write a letter to your condition – what do you want to get off your chest?

Dear Fibromyalgia, 

I've written to you before but I want to think now that you've been around for more than a year officially I am in a better place and a bit more to grips with you.
  Recently I've been looking back at old photo's, blog posts and journals from about 4 years ago, and I was shocked to see how ill I was then. I was fatigued and exhausted all the time, with constant migraines and  random aches and pains everywhere. At the time I think we put it down to being a teenager but now looking back at it all I wonder was it you making an appearance earlier than I thought? I've always slept a lot even from a very young age I would crash out in the weirdest of places all the time and my joints have always creaked and cracked for as long as I can remember so I am getting quite convinced that I have had you longer than I first thought.
  If that is the case and I've had you for more than the two year's I'd originally thought, I have done well. I had an amazing childhood and my teenage years, were rough but I definitely had some good times despite your early appearance. What I am getting at is that although you are worse than you've ever been at the moment I have struggled with your symptoms for a long time and I have proved that with chronic pain and fatigue I can still have amazing times and make unforgettable memories!
  I always worry that I am not doing all the things a 20 year old does, but really I need to recongise all the amazing things I can do with a chronic illness. Anyone can go out and get drunk, but it takes an incredably strong person to get up every morning and to be thankful for every little thing that makes them happy whilst fighting against a life stealing illness.You may hold me back and you throw all this crap at me that I do not deserve, but you are not going to steal my life away from me, I am more determined than ever to make myself happy and to make everyday count.
  So thank you Fibro, you have made me into a better person, you have made me stronger than I ever thought possible and you have made me into the most kick-arse twenty year old I've ever known!

From
The girl whose body you've consumed but not taken
Jayne
xx

5 Apr 2013

HAWCM Day 5 – Aspiration



What’s your one, three, or five year plan for your Health Activism?

I haven't really thought about future plans for my activism but I know there are a one or two things that I would like to try and do.
  • I would like to create more of a community on this blog, at the moment I am happy with the progression of my Facebook Page and my twitter account. But I hope that over time as I get more into blogging regularly that I will gain a community on this blog with people connecting with me and others through the comments. I know that things take time and I'm not wishing for it over night and I know I need to work more on getting comfortable blogging and make it second nature to me.
  • Like I said above I would like Blogging on here to become second nature to me and I want to become comfortable and confident in myself to share personal experiences and thoughts about my illness so that it can reach and help others. 
  •  
  • In the long run and distance future I hope to incorporate my love of walking and exercise with Fibromyalgia and chronic illnesses and create a Walk for Fibro event. which will be a sponsored walk a bit like Cancer researches Race For Life but the charity we'll be raising for is Fibromyalgia and other chronic illnesses. This is something I hope to do in 5 years or longer because at the moment I am just not in the right place to organise it but it has definitely been in my head for a while.
That is all really that I want to try and do, or at least all that is in my head at the moment, all I know is that I want my level of confidence to rise and then I hope that what I achieve through my Health Activism will increase and I will be able to help more people in lot's of different ways!

Thank you for reading
Jayne
xx

4 Apr 2013

HAWMC Day 4 – Sharing Resources


Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one.

I am going to use this space to lead people to helpful pages for Fibromyalgia diagnosis rather than a general chronic pain diagnosis because I have more resources for Fibromyalgia.

For websites I have a few sites to help people out :
  • The first site I came across and still go back to is Fibromyalgia Association UK which is a charity run by people with Fibromylgia and they offer a huge amount of information, and there are endless links i
  • From the FMA Website they have a very informational Forum which is great to help when you are newly diagnosed as it is full of people who are in the same position as you are and you can ask questions about anything to do with Fibromyalgia and anything that could be worrying you. I used this forum a lot when I was diagnosed, even if you don't feel confident enough to ask things there are hundreds of threads and more than often somebody has already asked what you were going to and there will be lot's for answers for you already!
  • Another forum I used a lot is The UK Fibromyalgia Forum which also publish The Fibromyalgia Magazine and they also have a fantastic website which has information from what is fibromyalgia to the legal side of benefits and raising awareness. This website I think is a must for newly diagnosed people with Fibromyalgia. 
Moving on from Websites I also have picked up a handful of books that have been great when starting to advocate for myself.


  •  The first book I picked up was The First Year, Fibromyalgia by Claudia Craig Marek . This book is fantastic (though a bit on the heavy side with a lot of information) for the newly diagnosed who wants to get to grips with their Fibromyalgia diagnosis. It goes through the stages of diagnosis daily, and monthly for the first year and covers so many different topics from understanding symptoms and dealing with your illness to staying up to new resources and starting support groups. 
  • Living with Fibromyalgia by Christine Craggs-Hinton  This book is a lot more simpler than 'The First year' book and is set out n small chapters . This book has been a good use for me as it again splits down different part of the Fibromyalgia symptoms and ways in which to manage them. It is a great little book for getting to grips with Fibromyalgia.
  • 50 things you can do today to manage Fibromyalgia by Wendy Green I had this book reccomended to me by some of my readers and it is a good little book to have. It has a handful of chapters that are split into smaller sections with different ways to tackle Fibromyalgia and really touches on different lifestyles to try to help to ease pain and other sypmtoms so I reccomend this book for anyone interested in learning about allternative therapes and lifestyle changes to help them living with Fibromyalgia. 

  •  Fibromyalgia For Dummies by Roland Staud and Cristine Adamec I always looked at this book and finally got round to purchasing it early this year and it is a great and really informational book. The only downfall for it for me is that is was written in America so the chapters about benefits and legal issues aren't relevant for people living in the UK. But don't let that put you off this book liturally covers hundreds of topics and issues you come across when diagnosed with Fibromyalgia . It is also full of so many helpful tips and overall is an amazing book! 
 I have also put together a Wishlist on Amazon of books for people newly diagnosed with fibromyalgia that have had great reviews, which would be great for you to check out!

I hope this post was helpful for anyone who are starting to advocate for themselves or a loved one. Let me know in the comments below.

Thank you for reading, 
Jayne 
xx

2 Apr 2013

HAWMC Day 2 – Introductions


Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.

  1. What is Fibromyalgia
  2. How to find a good doctor
  3. Getting a Diagnosis
  4. Coming to term with your illness
  5. My first year with Fibromyalgia
These are posts that I think will most help people being newly diagnosed with Fibromyalgia and other illnesses. The last one is a personal post about my first year with Fibromyalgia and how it has personally affected me.

I hope these come of use to you and please leave me comments to let me know :-)

 Jayne 
xx

1 Apr 2013

HAWMC Day 1 – Getting Started!


Why you write – tell us a little bit about why you write about your health online and what got you started? 

I started this blog roughly 6 months ago, in the hope that I would be able to reach out to others and help people who have chronic illnesses and chronic pain like myself.
  I write about myself because people want to know that they are not alone and I know I like to read other peoples first hand experiences compared to just text book written descriptions and examples.

I recently haven't been writing as much because I am trying to find my 'style' and I am torn between writing about different topic's every week or between making this a more personal space and writing about my experiences of being a young woman struggling through life with a chronic pain condition (Fibromyalgia) . I am leaning more towards the latter but I am nervous to put myself out there and share personal thoughts and feelings but I know I want to use my experiences to help others and offer support.

That was a ramble and a half but that is how I want my blog to run in the future even if I am a bit curious of what to write.

Thank you for reading and I am excited to try this challenge and I hope you enjoy me on this journey.

 Jayne 
xx