Interview with M.E sufferers friend; Hannah Hyde for M.E awareness week.

Beauful Hannah Hyde. <3

Today’s interview is with my best bud Hannah Hyde. She took on my m.e when knowing nothing about it or how it would affect me or our friendship. Yet through all that she has stood by me and been so understanding. I couldn’t of asked for more, she’s helped me through so many rough times through the years and still is today. People say that I’m the inspiration with having this illness but I believe people like Hans are, people who could easily walk away or forget about you, not on purpose but because they have their own lives. I know it has happened to so many people so many times, but she hasn’t and for that I will always be so so grateful. She puts no demands on me, just understands without me even having to tell her sometimes. She no way gives herself enough credit for this but I do and always will even if I don’t always show it. You have made me laugh so many times Hans, even when I’ve wanted to cry sometimes even during ;)) There’s not enough thanks in the world for that. So here she is the magical girl in question herself; Hannah Hyde answering all the questions from the opinion of somebody who is friend’s with someone with M.E…

What have u learnt about M.E? It's a bitch to start with, it attacks the white blood cells making u tried and in a lot of pain. It can cause u to have brain fog but it's different for different people, you don't know how long you'll have it for.

How has it affected you having a friend with M.E? It hasn't really there still the same person u where friends with at the start. You don't need to just sit around u find ways of doing thing but sometimes it's nice just to sit and talk. :)

What is the hardest part for you to cope with, with your friend having M.E? Seeing them unable to do something that every body takes for granted or something they really means alot that they wanted to do.

Was the M.E hard to understand?
I think it was hard at the beginning because no one really knew anything about it, but the longer you had it the more I learned and it was easier to understand like most things.

Is it hard to deal with to have made an arrangement but they cant make it?
It’s a yes and a no answer, yes your upset that they cant do it or cant come but you understand because they cant help it they would be there if they could they didn’t choose not to come.

What’s been the hardest time for you?
I have to say it was when you went into hospital for 3 months because you were there but you wasn’t really there. You couldn’t really get out of your bed and didn’t talk because you where in your own world so I think that was the hardest for me to see.

What support do you give to your friend?
I try to be there and make you think of the silver lining. As you obviously can’t see them all the time and when you don’t want to do something I try make you want to do it if I think it will help you in the long run. If I can see that you’re a flat pancake as I like to call it or just generally try t make things easier I get you a drink, help you up when you are down literally in some context. I read to you if you need to close my eyes and make me relax and lie down and do nothing so to rest. And I take technology things off you and type it/look at it for you so you don’t have to.

If your not I’m not well to do anything that big but need to do something what do you do?
Do a little activity like sitting outside in some chairs even though its not a lot you’ve gone outside or opening the double doors for some fresh air after two weeks inside (gives me evilss ;)) and do a little crafty activity or push you in your chair for a little bit. It’s doing something at the end of the day.

Do you think M.E is known about?
No, because if it was known about like cancer or HIV or M.S I would of known about I wouldn’t of had to research it or heard what doctors have said about it. It’d be easier to find information about it because it’d be known about but it’s not which it should be. I don’t think it’s fair that some people say it’s all in the brain, as it’s physically seeable that it’s not with the physical symptoms you get.

What would you do because of your experience with M.E to raise awareness?
If I had the chance to do something big and like wowzaa haha. I’d do a runway show and get a shop or boutique that’s wants to donate or sponsor. Get some blue and yellow dresses and get people to donate or buy the dresses. The model would be someone that knows somebody with M.E or had it or even has it cause we can berlingerdinger (Hans has a brill way with words ;)) up a zimmer frame. And for each person that comes out would say a piece on M.E. e.g "This is Rebecca Harrington sporting a blue ball gown, Rebecca has suffered from M.e for four years and so on…"

We know M.E can make the sufferer down but does it ever make you down to be around and see?
I think if anyone says it doesn’t get you down you’d be lying or stone cold bitches haha. Because your seeing your friend or best friend whatever case your in deal with something so hard and difficult. It’s not nice knowing that you can’t do anything and can only like get a drink or something for them which is not a big help. It’s upsetting in that light and see them not be able to go to school or get a job or do what they really want to do. Walking down the street in some cases, i think that’s a difficult thing to see and nobody wants to see their friend go through that.

I’ve asked an M.E sufferer whether she thinks it’s better for it to be better as a visible or invisible illness but what do you as the outside think would be better?
I must say it’s a hard question for an outsider to say, I’m going to say both sides. Say if you do have an illness that can be seen then I think you still get ridiculed for it because people still point and stare, look and talk. You would get more questions like "whats wrong with you?" Whereas if you don’t have a visible illness it’s believed it’s in your head because there’s no physical proof. So you will get people asking why you’re in a wheelchair and so on. So do I think its better to have a visible illness rather than an invisible illness? I don’t know it’s not nice to have an illness that you can see or can’t see. So I’m going to lead it up to you to decide, what do you really think?

　What illnesses do you know of that come from M.E?
Well obviously you, Rebecca Harrington has developed anxiety from not being able to go out and have a lot of time to sit and think and dwell. I don’t think it helped you cant go out and do the things that other teenagers are doing at that time. Depression again because you can’t be doing what everyone else is doing at that time and mad at your body like "Why can’t you do it body, why?!" Haha. Weaker muscles because your not being able to move them as much as everyone else. It’s easier to get headaches, lower immune system – like if I can a cold it’ll be like black lung flu for you. So you get hit with it 3 times as hard. So lots of general infections and lower concentration that leads to the headaches. Also intolerance’s to certain foods/ products.

Do you think there’s a lot of support around for M.E?
I think there is in some point of the country, some people get a lot more help easier than others. In the Lytham St. Annes / Blackpool and Lancashire area there isn’t the same support or network of people or opportunities available. Everything’s a struggle, everything’s a fight, you’ve got to talk to lots of people to get the answer you could of got at the start. So no I don’t think there’s a lot of support, awareness round here for people with M.E. Say somewhere else like York they might get an answer in a week whereas round here it could take a few weeks. To use as an example.

Obviously you’d want to take it all away like we all would but if you only had the power to take one part/ symptom what would it be?
I think it would have to be the walking and the movement side of things. Just because then you would of your own independence, if you wanted to walk out the house you wouldn’t need to worry about taking the wheelchair you’d just walk out. Although you can a lot to do a short amount with the concentration, but the fact you could walk and do something even if still just for a short amount of time. I think it would help a lot with anxiety and depression and not being able to do things you want to do.

Any last words to say or to sum up the interview?
Well to sum up this interview I’d have to say… M.E is a bitch and I don’t have it and I don’t know what people go through or what It feels like. But all I can is, you have to try and look on the bright side of things. Say your in bed one day then think there’s always tomorrow. If you can’t get out of bed then think what you can do from your bed. I mean of course you’re allowed to cry, I mean I’ve had lots of cries and I haven’t even got anything to cry about hahaha. But we have to pick our selves up and we have to know that if this is what it is then what can I get out of it.

I love how she keeps saying my full name in the answers. ;) I hope these posts have helped you understand a little bit more about M.E. thankyou so much to anyone who has taken the time to read them, if you have any questions then feel free to leave a comment. Before I go here’s the article that was in last week’s gazette to raise awareness for M.E awareness week. - http://www.blackpoolgazette.co.uk/lifestyle/supplements/eve/dealing-with-me-1-4525016

Lots of love,
Becca. xox

Interview with M.E sufferer Sophie Lees for awareness week. :)

Hey guys, :) 

The beaut Sophie Lees
herself. :)

Part of M.E awareness week i've decided to do a few blog posts to give you an insight into everyday life for someone with M.E. So today's post is an interview with my best friend, Sophie Lees who also has M.E. We met through AYME, (Association of young people with M.E/CFS) just over a year ago and i have to tell you she is an inspiration to me everyday and always keeps me going no matter what.I don't know where i'd be without her. :) So whilst i'm here i'd like to say thankyou to her for that. <3 She's had lots of ups and downs but stayed super strong through it all. Currently she was doing really well through alot of determination, techniques, support and time. Unfortunately silly sinusitis is infectionis making her rather poorly at the moment but she will kick it's butt soon enough just like she does everyday with the M.E. YOU CAN DO IT SOPH :D So read the interview to hear more about the beautiful Sophie Lee's everyday life and experiences with M.E... 

How does M.E affect you everyday? 

It affects me quite a lot, I can do normal tasks but have to keep them quite short and have to have lots of rests and a sleep every day.

What everyday tasks does it stop u doing? 
Erm I can't wash my own hair, or make meals things like that.

If you could sum m.e in one word what would it be?
'extremetirednesspainannoyinghorribletiredtiredtireddebilitatingscarytired' that counts as one word right? ;)

What have you lost because of the M.E? 

I lost the life that I knew, all my independence, a lot of my friends, going to school and my health! 

And is it better or worse to be an invisible illness? 
I think its worse because people don't see you as ill. 

What is greatest achievement since the M.E?

Getting and A in my english exam I took when I was really poorly. 

When have you been at ur best during the illness? 
Probably two and a half years ago when I didn't have M.E very badly and it was manageable and I could still lead a normal life!

What's been the hardest part of the illness for you / to cope with since it started? 

Loosing friends, because they don't understand the illness or what I can and can't do. And there lives are so busy I just kind of get lost and forgotten about!



When you were at ur worst - how did that affect you and what did it stop u from being able to do? 
It stopped me from doing everything, couldn't walk couldn't really go out for any amounts of time and just stayed at home! 


Has the illness changed you and if so how? 

It's made me a stronger person and made me appreiciate the little things in life, and not take things for granted. 

What else has lead from the M.E? E.g illnesses.
Anxiety, ibs, bladder problmes, kidney infections, sinusitis, general infections!  



Did it take you a long time to get a diagnosis? 
No I got diagnosed straight away!



And what's helped u to cope physically and mentally during the illness? E.g techniques, treatments and support!
My physio has been a major part, CBT, doing pacing, without it I wouldn't be where I am today! And of course all my family and friends support!





Have u ever had any bad experiences with health professionals?  
I haven't had any bad experiences with health professionals- very lucky!!



Was the support u received like the CBT and pacing and Ayme easy to access? 
Yes it was! 


Did u just get referred to all those things mentioned through ur GP?
 Well I already had a consultant through other illness's so I just had him already and got physio through him and CBT through my GP! 


For you what Is the worst symptom?  

The tiredness. 

How's it affected ur family?

They have had to change a lot in their lives to be able to do things for me/with me, eg. mum had to stop work to look after me. 


What scares you the most about having M.E? 
Not knowing when you will get better. 
And what would awareness/ would you want for people to know or do if they could? 
Just be more understanding about the condition and what it does to people lives. They wouldn't choose to live like this so believe in the illness because it is definitely real!

How are you now? 

I'm tired but okay thanks! howa you? - Classic Sophie ;) I'm pretty tired too but okay thanks, Soph!;)

Hope this has helped you to understand a bit more about M.E, thanks for taking the time to read this and keep watching out for my upcoming blog post; an interview with a friend of someone with M.E. :)

Lots of love,
Becca xox

Fiction's reality... Day in the life of Martha's M.E battle.

Martha's Story...

The alarm bell bellowing at 8.00 to let me know life is ready for me, but i have been awake for 2 hours already... jeeze wouldn't it be good to be one of those people who can just fall asleep whenever wherever! Get to sleep late, interrupted sleep and waking up at the crack of dawn. Oh to the joy of insomnia.
My dad could fall asleep on a clothes line! As i roll to the other side i let out a painful groan, it feels like i've done ten rounds with frank bruno and lost... Ahh well i thought it'd be too much of an ask for my bones not to feel like the chewing toy of whoever's wicked plan for me this is! I mean i have it good, my friend suzy can't even get up all day everyday in darkness metaphorically and literally staring at the same four walls, hoping tomorrow will bring a miracle. 

 I count to three slowly preparing myself the task of sitting up and getting out of bed, every part of me aches and seethes as i do the devilish thing of wanting to start my day. It actually feels like i have a little devil inside of me willing my life to fade away, losing grip and falling deeper into it's clutches. I won't let it win, it won't defeat me. i have dreams you see, big ones at that... New york, paris maybe even Tokyo... the world better be prepared for me ay. 

 I'm up, woohoo victory until i have to walk that is, my legs feel like they have the weight of sledge hammers. My brain willing me to bound around my room, my legs like in sinking sand refusing to move until i force them to set off of the meter journey to outside my door. Bum shuffle, bum shuffle, bum shuffle down the 11 steps breaking between each one becoming more and more out of breath.

Eventually I get down the steps of doom and head towards the living room.

 What's today's plan I wonder need to judge this carefully, Suzy wants me to go to hers tonight but if I go there then I won't be able to go out for the wheel I promised mum. Truth be told I feel like I could sleep for about a gazillion years but doing nothing wouldn't help me or my anxiety or so I'm told! Told by everyone that's meant to know what's best for me, thats another thing with being ill all the choices get taken out of your hands really. No control, no say just decisions made for you all thanks to the devil.‏ 

The little bugger cropped up about four years ago bug after bug weeks off school at a time and then that's when it came glandular fever hit me hard and so my invisible enemy set on its quest of my white blood cells, my identity, my life.

 When I was little I hated school, always wanted to be at home. Now I'd give anything to learn my 2x tables in mrs partridges class. My education went out of the window, 11 GCSE's down to 3. Better than none ay, that's what they keep saying. "After all you've been through, 3 is amazing."
"Yeah." I'd say plastering on a smile, then why doesn't this feel a victory then? 

 Although when I was in hospital, the worst time yet i didn't think I was gonna get any or out of there. I was tube fed, unable to walk and just in a pretty bad place. But i eventually i got there, and got out managing to take my few GCSE's. Too many people don't manage to get any, not even sit up in their bed i'd say I am pretty damn lucky! I wondered what it would of been like if I went to prom; I'd dream for years finding the perfect dress the perfect shoes, the perfect tiara, the perfect night. I never got there but went round to Lucy's before she went, she looked so beautiful and made me feel so included. What can I say I have one hell of a best friend there, standing by me through it all even when she had no idea what it is that was wrong with me. Even to this day our friendship is as strong as ever. In a way I think we're stronger if your not compatible then the hundreds of days where you have to sit around doing nothing would get pretty boring but it doesn't. Test of true friendship id say, she doesn't treat me any different still shouts at me if I'm being silly and lets me know when I need to snap out of whatever rut I've put my thoughts in and in return I know how to give her a bit of a hard time too shall we say... Through the years there's been PLENTY laughs and tears! There's so many tests in life and friendship is a test that is truly worth passing. 

 I need to finish Zara's post off too she was meant to get it about a month ago but with my hands playing on strike not managed to get that for. I do love post from my friends since joining a M.E based support network, we send it to each other to cheer us up. And it certainly does. Maybe tomorrow that's my philosophy and so whatever is not accomplished today will be successfully completed tomorrow I hope. Only so many spoons us m.e folk as we call it; a devision of energy per day and if we go over into tomorrows spoon well then that's less spoons for tomorrow. There's no top up with the devil. Although sometimes there's false deals, a promise of a little more energy which is never really true just a ticking time bomb of false adrenalin ready for you to crash and burn so to speak.  

 Anyway off for a bath, or what I call the dignity taker, every time the water empties its more like a little bit more dignity down the drain rather than water. Having help to get in and out of the bath, washing my hair wasn't the life I dreamed of. More like 10 minute showers rushing to get ready for the day of college and then meal with the girls ahead. 

I catch the looks every now and then from my parents the looks of pain, of sorrow of seeing their daughter like this. What gets to me the most is if you look hard enough you can see the reflections of the childhood I had lost not only that I had dreamt of but they had too. 

 The amount of stories I've read and heard off health care professionals and countless people that class m.e as a bit of tiredness, have a bit of a rest then you'll be fine. Or that it's all in your head and your simply lazy, if only they knew if only they saw Suzy in her bed crying herself to sleep, the curtains drawn in the middle of the day because the natural daylight is too much for her to take. Or me struggling to cut up my food, my bones shaking so hard their own symphony of pain and exhaustion. 

 Last week coming home from my friend Betsy's, I could feel the devil taunting me letting me know I'd done too much by going to see her and watching a movie. I should of listened to it all day I felt bad but I thought I'd be fine when I got there that the change of scenery would do me good. I could of cried on the spot, it took everything I had no to yell, cry and crumble into a heap all at once. Even that seemed too much energy at the moment, all I wanted was my bed and the hope of tomorrow. It hurt to be touched, I felt electric but not in a good way, one touch and I'd be in for a shock. The noise so magnified it felt like my head was ready to implode. Even moving a finger was an ask, crawling because my legs had given up each shuffle a painful reminder that my
Life was not normal, I wasn't normal.

 Me and mum head out on our little journey into maple village, me all set with my camera getting ready to capture the world from an eye that could only see beauty. Being ill really does make you appreciate the little things in life as corny as it sounds. A nice summer day, the smell of fresh cut roses as im wheeled past a florist. An hour of respite just as long as its a quiet walk and my back can withhold sitting up for that long. I never really have believed in luck but every time we set off on a trip out I know it's a lottery if I'll pay the price when I get back. 

 Heading home knowing the excruciating pain the trip out will bring almost leaves a bitter sweet taste in my mouth. As we reach the front door I just pray it won't bring me a world of payback. 

So many amazing memories even since being ill meeting so many wonderful people. It's so good to speak to people who know how your feeling, who comfort you and let you know you'll get there and so will they, with you by there side. I could just sit for hours on end looking at my photo wall and post because even when I feel so alone it's let me know I'll never will be. These people, my best friends are my life and my family too they make me never give up even on this undecided jail sentence. There support is invaluable and I really hope they know how much they mean to me. Wouldn't be able to get through a day of it with them.

 Sleep now, sleep now, sleep now giving my unconscious mind the signal to allow me to sleep so I'm ready for the weekly dose of tv entertainment tonight. Gotta love Britains got talent, all sorts of people all going head to head to be called the nations biggest talent. I dont know why it entertains me so much, I mean a tone deaf grannie singing 'I will survive' doesn't get more redicuous than that. I have to give her some admiration though, at least she believes in the words she's singing. At least she has the courage to never give up and live out the dreams for a better tomorrow. After all isn't that what we're all doing silently in our everyday lives?... <3 

Your own little jail everyday.

What's coming up... :)

Hey guys, sorry for the delay in posts but i havent been too well so havent been up to post but seen as it's m.e awareness week next week i'll be making up for it by posting a few times next week. :) I plan to do a day in the life of someone with m.e, an interview with someone who has m.e and a friend of someone with m.e. :) Hopefully this will raise some awareness and explain a little more to anyone who isnt really sure what m.e is. :)

M.E. is a chronic, fluctuating illness affecting 250,000 people in the UK. It may be diagnosed as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS). M.E symptoms may include persistent exhaustion, muscle and/or joint pain, sleep disturbance, feeling ’flu-like and having problems with memory and concentration. Symptoms may include persistent exhaustion (‘fatigue’), muscle and/or joint pain, sleep disturbance, ’flu-like symptoms such as headache, sore throat, painful lymph nodes, dizziness and/or nausea and problems with memory and concentration.
M.E. affects people in different ways and to differing degrees. It’s a very variable
illness and your symptoms can change over time. It’s important to find out more about the range of symptoms experienced by different people with M.E. - This is a copy and pasted text on what m.e is and just a few of it's many and varied symptons. M.e is just thought of as a bit of tiredness but to somebody who's living with m.e it's so much more than that. It changes your life and those who are around you. So hopefully in my next few posts it'll become apparent what m.e really is and how it affects thousands of people's everyday lives.

To raise a bit of awareness would be amazing, i have also done an interview with the gazette in my experience with m.e which should be in the gazette on tuesday the 8th on the front cover of eve supplment. :) I am currently making ribbons after i had some laying around for a photography concept i was doing for next week. I've created a fb page and i would really appreciate people taking a look, it's for a really great cause. All the proceeds will go to action for m.e - an m.e charity that supports many people who have m.e and their families. :) - www.facebook.com/countmeinribbons

Also my auntie's friend, Bernie who's teaching me more about jewellery came yesterday and we finished the necklace i started to make when i went round last time and she showed me how to make a brooch which i'm quite pleased with for a first attempt. :)

From yesterday's jewellery making sess
;)


So that's all for now, you'll be hearing from me soon.
So keep a look out. ;)

Lots of love,
Becca
xox

Photo of the week;