Pain free pass

- What’s a day that you wish you could have used a pain-free pass (either in the future or the
past)? How would being pain or worry-free impact that day?

Reading a few other peoples posts for today it seems wedding days are the common theme for the pain free pass. To be honest I dont think I can think that far ahead.

If I could have a pain free pass I think I would use it to try things I could never dream of doing. Like running and climbing a mountain and skiing. I would spend the day with my friends & family being active and them not having to worry about whether Im okay and make sure Im not over doing it. Then I'd go out and dance into the early hours of the morning without a care in the world. Not having to worry about whether Im going to crash and burn or fall apart would take the stress out of the day and I could let my hair down and have a laugh. I know I should I probably save my pass for a big day in the future like graduation or wedding but it wouldnt feel like me doing those things if I had a pain free pass. When I graduate I know I have done that despite all my pain and health issues and its what makes graduating even more special. If I ever get married it would be nice to not be in pain on the day but Im going to have to spend the rest of my life with that man pacing and managing my pain so it would feel like a lie if I was healthy on my wedding day.

Learning

- Share something you learned from another Health Activist (that everyone should know!).

Over the years I have learnt

- No one is the same - even people with the same condition suffer from it differently
- Everyone experiences pain differently. What I find unbearable someone may live with daily & vice versa
- What works for one may not work for another
- Doctors are not always right
- Know one knows your body better than you

Technology

- Write about how your life would change if there was no social media.

Wow I cant imagine my life without social media. I know it gets slagged off a lot and people complain that kids dont know how to have fun without the internet any more and I agree that childhood is definitely not the same any more but everything has moved on. The people who slag it off seem to forget about the house bound people who still want a social life. Social media is amazing for that. It helps you still feel part of the world when you can't even get out of bed. It means that on days where Im in too much pain to get up and go see friends etc I can still have a chat & a laugh and even better I can do it with people that understand. It makes a massive difference to be able to talk to people who have an understanding of what you are going through. On social media I can celebrate things that seem stupid to my healthy friends, like having enough energy to shave my legs or being able to wear jeans or getting new splints/mobility aids. What healthy teenager is going to congratulate me when I tell them I managed to shave both legs in one go or get excited over wheelchair cushions with me. Without social media I would feel lonely and would be missing out on some amazing friendships.

Day to Day

- Write about the things you couldn’t live without – list 10 things you need or love most

1. My family and friends
2. My Laptop/iPad for keeping in contact with all my amazing on line friends & there is always someone to talk to when I need distracting from the pain and to watch films on when I cant sleep
3. My polar bear hot water bottle - A teddy and hot water bottle in one
4. Sweatpants/Pyjama pants
5. Fluffy socks
6. Cushions, lots and lots of cushions
7. Ice packs
8. My iPod, I cant go a day without listening to music
9. My meds - I cant function or move without excruciating pain without my daily medication
10. Make up - to make me look healthier when I feel like shit

Adversity

- “The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan
True or false? When do you bloom best?

I believe that having my chronic illnesses has shaped me as a person & I like to think they have made me a stronger better person and I believe the people that bloom after all they have been through are beautiful.

However I do have to say that I am definitely not beautiful and don't bloom when I am having a bad time. When I'm crippled with pain & haven't been able to shower for a week and am in the same gross pj's. When I have to shuffle from my bed to the bathroom. The nights I spend curled up in a ball with ice packs & hot water bottles or sit in the shower crying I don't really consider myself rare & beautiful. However when I come out the other side maybe.

Burnout

- Write about burnout. What does it feel like? What are your burnout triggers?
- What gets you OUT of the pit of despair when nothing is going your way?

I pretty much burnout as soon as I stop over doing it. Im not very good at pacing especially when I'm at uni. When I crash and burn I'll be exhausted, go really quiet and hurt all over. I struggle to do the simplest things like form sentences, move etc. Every thing seems to take a billiion times more energy than it normally does and every movement hurts. I'm really bad for staying in my room and avoiding social interactions even though talking to my friends would probably help cheer me up. I struggle to not fall into the pit of depression and find myself wandering if things will ever get better & asking myself why Im putting myself through uni.

To get myself out of this. I usually find taking a day or 2 to completely rest, not do any work etc. I usually stay in bed & watch DVDs. I eat some fruit because eating a lot of crap makes me feel worse. I force myself to go and spend time with my friends because they are amazing at make me laugh even when I feel like crap and laughter helps most things. Anything that I am stressing about I talk through with my mum or my friends because while Im panicking about it they can usually think it through & find an easy solution to my problem & that makes me feel tons better And I try to attempt a good nights sleep. The exhaustion is usually what gets me the most.

Vintage

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

This is a new laptop so I dont have many old pictures on here. This is my favourite picture of me that I could find. This was 3 or 4 years ago when I was a bridesmaid at mu uncles wedding. I was doing a lot better then.  I had my wheelchair but I didnt use it very often. I managed to sit on the stupidly uncomfortable benches in the chruch for the whole service & not break down in tears so my hips liked me a lot more back then. So um enjoy my face and look Im blonde

"I take it back..."

- Write about a time that you lashed out at someone close to you because of
frustration/fear/anger resulting from your health condition and you wish you could take it back.
Forgive yourself and let it go

This is going to be a short post as I should be revising.

It was a few years ago. I was really down and in a hell of a lot of pain. My dad kept trying to get me to do things and push through the pain. He was pushing me too hard and I kept snapping at him. He was frustrated that he couldn't do anything to help and I was pushing him away because I didn't want to bring him down with me. We got in a massive fault and he said it wasn't his fault that I was in so much pain to which I screamed that it was because I had inherited it from him. His face fell and he walked out the room silently. I have never felt so guilty. I have never wanted to take back words so much. The worst part is that he still blames himself now and even then when I was hurting and angry I didn't blame him. I have never thought of it as his fault. It just came out. So yeah I'm really sorry and I didn't mean it at all.

Wordless Wednesday

- Go to http://www.wordle.net/ to create a word cloud or tree from a list of words associated
with your condition, blog, or interests. Post it!

Sorry the colours are so crappy

Misinformation

- Tell us 3 things that are true about you, your condition, or your Health Activism. Tell us 1 lie. Will
we be able to tell the difference?

1. I dislocate/sublux at least one joint a day
2. It will get better as I get older and stiffen up naturally
3. Some days I struggle to even remember my own name through the pain and the fatigue

Can you tell which one the lie is. As Im behind with my posts I'll just post the answers below

1. True - It may be something small like a finger/toe or something medicoire like a knee or something big like a hip. It depends on the day and how it comes out as to how much it hurts but it always hurts.
2. False - Our collagen is broken so I won't stiffen up naturally like my old consultant kept trying to asure me.
3. True - Some days all that I can think of is how exhausted and in pain I am. I struggle to remember my name or what day it is or whether I just took a drink from the glass in my hand or if I was putting it down

Spread the Love

- Thank a few of your fellow Health Activists for what they have done. Call them out by name or
twitter handle. Share your love


Oh god I don't know where to start. All my on-line friends are amazing and have done so much to help and support me. I don't know how I would have got through all of this without them. I don't think I can name individuals. I'd be here all day and I'd probably forget someone and feel terrible. So if I have spoken to you on twitter or tumblr or anywhere on-line then I love you and you are awesome and just know that life would be a lot harder without you. Big Hugs to you all

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

This is going to be a short simple one...

E very damn joint

D islocates and

S ubluxes

Hindsight

- If you could go back in time and talk to yourself on the day of diagnosis, what would you say?

1. It may not seem like it but this diagnosis is a good thing. So many doctors thought it was something a lot worse and now you know what is you can manage the symptoms.
2. Go online and research. A lot of doctors wont have a clue what EDS is and you will need to explain it to them
3. Go online and you will make some amazing friends
4. Dont push yourself too hard.
5. Dont be too hard on yourself. Its not your fault you cant do some things and you will do a damn good job at the things you can do.
6. Dont feel guilty. Its not your fault.
7. Dont be so stubborn. A wheelchair will give you your freedom when it hurts too much to walk.
8. Remember doctors arent always right and if something isnt working etc ask for a second opinion
9. Remember you know your own body better than anyone and trust your instincts.
10. Stock up on pillows, cushions, hot water bottles etc they will be your best friends
11. Be awesome

Favourites

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

My favourite social networks are twitter and Tumblr. They are an amazing support network. I've made some amazing friends through them as well. To anyone who has recently got a new diagnosis I would highly suggest taking to twitter and tumblr. They are some lovely people out there who help me, answer my questions and provide support when Im down and in pain. Yes there are some people on there who think they know your condition better than you & tell you that you're lazy & theres nothing wrong with you etc but if you can ignore them you could make some truly amazing friends.

My twitter is @Bendy_Beth
My tumblr is bendybutnotbroken.tumblr.com if anyone wants to follow

Wordless Wednesday

- It’s often hard to like pictures of ourselves – post your favorite picture of yourself.
Here's two pictures. Aren't you lucky

Care giving

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

• Listen - It's really important to listen to what the person needs
• Just because a person say they are fine doesnt always mean they are
• Be prepared for plans to fall through. We have to see how we feel that day but everything could change by the next hour.
• Some of us are really stubborn so let us do what we can for ourselves but be ready to help if we find we can't actually do it.
• Dont constantly compare our struggles to yours. I'm quite happy to hear how you have a bad back/feel like crap but please don't compare it to my pain. You will probably be better in a few days/weeks.
• Don't treat us like we are stupid or a child and dont talk down to us just because we need you to look after us.
• Don't push us to get out more/do more. I know its good to get out but if we are in a lot of pain that is the last thing we want to do.
• We make pretty awesome friends and just because you care for us doesnt mean we dont want to be friends with you. In fact Im best friends with my carers.
• Don't panic - I need carers who dont panic when I dislocate something
• Be good at making tea and filling hot water bottles
• Be prepared to curl up with us a watch a film
• Be able to have a laugh and not take the job too seriously. I mean tripping over my walking stick and dislocating my knee is pretty funny once everythings back in place and strapped up as is managing to dribble down myself even when drinking from a toddler cup

Animals

- If your health condition (or the health condition of a loved one!) was an animal, what would it
be? Is it a real animal or make believe?

If my condition was an animal I would say it would be a mouse although maybe not as cute. Mice are small and you can go for a while without knowing that they have managed to get into the house but they soon start chewing your stuff and being a nuisance. Occasionally you think you've got rid of them but they make an appearance again. They seem to spread around the whole house and get into every nook and cranny. Without the small details of chewed stuff and mouse crap in places you can't tell that they have taken over the house and are under the floors, in between walls etc. My condition is like this. To look at you can't tell I have pain running through my body. Every time I get a break I know that it will be back. Its a infestation I will never get rid of that gets into every nook and cranny of my body right down to my fingers and toes.

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?

I was once told by a doctor that I just needed to eat healthily and exercise daily and I would be cured. If only that would work. Exercising daily? Really? Some days I can't even get out of bed to pee. I try to do physio and swim when I can but I have to be careful not to cause a fibro flare up or dislocate anything. Even with that how is being fit going to fix my genes and make my dodgy collagen work properly. Having good muscle strength is good for keeping joints in etc but it's not going to cure me. Sometime I wonder how these doctors passed med school.

Letters

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

Dear Conditions

I could write you a list of all the horrible things you have done to me, all the pain you have caused me and all the plans you have made me miss. It would probably be quite a few pages long. Some days I really hate you. You destroyed dreams that I had had since I could remember. You made my life 10x harder. I have to fight with you to do daily tasks like get out of bed, even brushing my teeth is a strain. That shouldn't be the life of a 19 year old but this is my life because of you.

But after all that you have put me through you have been with me all my life & have shaped me as a person. You have made me who I am and I like who I am. I think I am a nice person and have turned out pretty well. Despite you I got A levels and made it to uni and hopefully despite you I will graduate uni in 2 and a bit years time. It may take me a year longer than others but I will do it. I don't know if I would be as close to my family if you hadn't made me so dependent on them. They are my rock and I love them to bits and I'm grateful that I get to spend so much time with them even if it is at hospital appointments or curled up on the sofa watching films together. I also lost some friends because of you but even though it hurt at the time and I cursed you I now know that if they couldn't handle us together then I didn't need them as friends. I now have an amazing group of friends and have met some amazing people on-line who I class as friends. I even got to meet some of them and they are a great bunch of people. I may have a quieter social life than most people my age but I still manage to go out with my friends occasionaly but we also swap nights out for nights in with a film and we have an amazing time and I never stop laughing. Even when you are making me grit my teeth with pain my friends can take my mind off you and make me laugh until I cry.

So yeah you've messed up a lot of things and you cause me pain daily and there are times when I hate you with a passion and wish that I was free of you as the tears roll down my cheeks and I can't sleep for the 4th night in a row. As my joints pop out of place and I miss another assignment deadline I wonder why I bother with uni and why I don't just stay in bed forever but then I remember that I am a hell of a lot stronger than you and I can beat you. Some days you may win but I will dust myself off get back up, strap up my joints, use my wheelchair, take painkillers. Whatever it takes I will beat you and live my life and I suppose I have to thank you for the good things that have come of this.

Aspiration

- “If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations
are no longer an issue. What is your biggest goal that is now possible?

I would love to make people more aware of invisible illnesses. I want to be able to teach people that the whole "but you don't look sick" thing is a stupid thing to say. There are a lot of people in the world suffering with invisible illnesses and they are all subjected to the ignorance of many healthy people. I want ill and disabled people to feel safe and happy to use wheelchairs and disabled parking spaces etc without worrying whether some ignorant person is going to make a comment or harass them and try and make them feel guilty for something they are entitled to use but would also love to not have to use.

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. Remember to include sites that
lead to successful self advocacy!

A lot of people witch chronic illnesses find the spoon theory a good way to explain the struggles of their day to day lives. There is also a whole community of spoonies http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Some sites for EDS

http://www.edstogether.com/ - This is a new site but is created by someone with EDS to help others with the condition. Theres forums, tips and tricks and info on what eds is

http://www.ehlers-danlos.org/ - This is the EDS support UK site. They have a message board so you can talk to others and get answers etc

Twitter and Tumblr are also great resources just search your condition and you will probably find loads of people you can relate to.

I don't really have many resources but hope these help

Wordless Wednesday

Post a picture that symbolizes your condition and your experiences

Okay Im cheating and using 2 pictures and words.

Introductions


- Introduce your condition(s) to other Health Activists. What are 5 things you want them to know
about your condition/your activism?
- Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help
the newly diagnosed.

Okay so my conditions are Ehlers Danlos Syndrome, Fibromyalgia, Raynauds and Chronic Costochondritis.

Ehlers Danlos Syndrome

1. It is a connective tissue disorder and there is a defect in the collagen. This means the person is hypermobile and prone to dislocations and subluxations of every joint and yep even ribs can dislocate which makes you get pretty good at holding your breath
2. Our bodies have to work a lot harder to keep us together so simple tasks like lying down make us ache as our body struggles to keep all our joints in place (quite often failing)
3. Pretty much everything in our bodies has some connective tissue in it so a lot of the body can be affected including organs, digestive system, eyes etc
4. There are quite a few types the most common being type 3 which is the hypermobile type however it is quite common to get overlaps of the different types.
5. We have fragile skin and scar stupidly easy (I have scars from paper cuts and from when I somehow cut myself on a smooth plastic box) this also makes shaving fun (I once took off 2 inches of skin from my ankle and still have a lovely scar). We also bruise easily.

Fibromyalgia

I've only recently been diagnosed with this so still learning but here's what Ive got so far

1. Its something to do with over active pain sensitive nerve cells and abnormal pain pathways so we feel more pain from things that shouldn't be painful
2. We get the lovely fibro fog which makes us forget simple things like our names the name of the remote control, when we took our meds and makes our brain feel like a big pile of mush
3. We also get to experience allodynia which means that we get pain from things that shouldn't normally cause pain like wearing clothes or being touched.
4. Is often diagnosed with a pressure point test which isn't an overly fun experience. The Dr presses the points and if you hit the roof then you have fibro. They are very tender and from experience I suggest you don't sit there and poke yourself to see if they're true. It hurts

So I've decided to take part in The WEGO health activists writers month challenge. I know I'm a bit late but I'm just going to do the first 3/4 days now as I can't sleep anyway. So here goes

Day 1 Getting started

I started talking about my  health online when I joined a few message forums as I was diagnosed young and had never heard of Ehlers Danlos Syndrome before and I had so many questions. Those helped me understand my condition a lot better and I learnt a lot from friendly helpful people who had been through similar things themselves.

My friend talked my into getting a twitter account, I signed up to make her happy and then didn't use it for ages. One day I was bored and started searching random things on there. That was when I found the amazing online community. I soon made some amazing friends and found it somewhere I could talk about my health and get help and advice on things I wasn't sure about and could help other people with things I'd been through before them. It was great being able to support other people and pay back the favour by helping others understand their condition a little bit better.

I then got Tumblr and things got even better. It's a great place to talk to understanding people if you're scared or in pain and there is always someone who kind of knows what you're going through to help. I love being able to talk to other people going through the same thing as me and hopefully be able to help them even if its just listening to them and providing internet hugs

Blogging about my health has helped me so much. I can rant about my body on bad days without being told not to moan. I can celebrate the little things like shaving my legs and be congratulated and cheered on by people who know just how hard that simple task can be. I can cry about my crappy body and be sent hugs by lovely people. These people are my family and they share every high and low of the rollercoaster that is living with a chronic illness. I love every one of them and am so pleased that I got at least one positive thing out of having health problems.

I'm a newbie getting involved with HAWMC this year. I signed up last time but never got round to writing anything. I really want to hopefully help more people and raise some awareness about EDS as well as write more because I really don't write enough.