May 12th Blog Bomb!

It's so important to continue to raise awareness of the invisible illnesses, because it often feels (to me) that there's very little support or research being undertaken to gain a better understanding of the causes, and subsequently cures for these miserable illnesses.


I hope that's just my perception?

What I'd like to do with this Blog Bomb, is catalogue some of the resources that are available to help sufferers of Fibromyalgia. Whether that's financial, medical, or perhaps more importantly, understanding and empathy.

Helpline
FMA UK National Helpline 0844 887 2444 Mon - Fri 10am to 4pm - helpline

Websites
FMA UK http://www.fmauk.org/ - Fibromyalgia website
FMAUK FibroMapp - An app to help track symptoms / medications etc
FM NHS Choices http://www.nhs.uk/conditions/fibromyalgia/pages/introduction.aspx
UK Fibromyalgia website http://www.ukfibromyalgia.com/

Facebook.com
Fibro Chat
Fibromyalgia UK
Fibromites With Hope
Friends Because We Have Fibro
Support for Fibro Sufferers
Uk Fibromyalgia
Women With Fibro

Twitter
FibroModem
Fibroaction
Fmauk
May12th
theslowlane_ME


I'm sure there are many other really useful resources that can be added to this list, I'm sorry if I've missed anyone off.

Keep up the good work friends.

Keep smiling and be strong.

#ThisisME - A Blog Chain

A Post for #ThisisME

#ThisisME is a blog chain event run by Louise Bibby of Get Up and Go Guru.

A link to her post about the initiative can be found on her site here:
This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain

She has requested that each participant answer a series of questions about their illness - either on their own blog, or by emailing the answers to Louise herself, for inclusion on her blog. My contribution follows:

 

#ThisisME

What is your name & how long have you had ME / CFS / FM?

·         Dawn Derraven, I’ve had Fibro for a long time but was only diagnosed just over a year ago.

Where do you live?

·         Wales, in the shadow of Twmbarlwm

Age?

·         47

5 things about you that the people in your life probably don’t know?
(non-illness related):

·         I may seem strong but I’m easily hurt.

·         I can’t stand bad feelings between anyone.

·         I have a very large, fluffy, purple onesie!

·         I really love my job.

·         I wish I’d never had my tattoo.

 

5 things about you that the people in your life probably don’t know?
(illness related):

·         When I’m really tired I can’t talk, think, text or even smile; breathing takes all my effort.

·         I’m not boring or up-tight, it’s just that laughing, singing and dancing, use up too many spoons that I can’t afford to use.

·         I can’t function when I’m in pain as everything hurts, even my teeth.

·         If I forget to do something or forget where I put something, it’s not my fault, it’s my FM.

·         I get anxious if the route out of a room is blocked by someone or something. Even if someone has their legs outstretched.

What one thing do you think most people wouldn’t know about living with ME / CFS / FM that you’d like them to know?

·         I’m never well; I just have various levels of unwell. Some I can cope with, some I can’t.

 

What is the most frustrating aspect for you of living with ME / CFS?

·         Having to cancel plans at the last minute as I feel unwell, being unreliable.

Anything else you’d like to say before finishing?

·         Please take the time to learn about these invisible illnesses, the more you understand the easier it will be for all of us.

 

****

Louise says:

·         Any other bloggers who want to join the blog chain, please copy this and fill in your own answers.

·         Then email Louise@GetUpAndGoGuru.com so she can link to your blog post in her original post.

I’d Love You To Join In!!

 

A Valuable Lesson

I remember the first counselling session I had, she asked how I felt and why I booked the appointment. I found it really weird talking about myself, I described it as self- indulgent. I'd never spoken about myself so much, it felt uncomfortable.

That's the sort of person I used to be. Always putting everyone else first, a people pleaser, going out of my way to fix everything for everyone. I'm annoyed that FM has taken that away from me.

I have had to learn to say no, I have had to accept that I'm not invincible, I'm not Super Woman!

Instinct kicks in and I want to revert to my old self; I used to be the person who everyone came to for help, both at work and at home.

I still am that person actually, but my response has had to change. Rather than taking control and fixing things, I have to give my family, friends and colleagues advice about how they can sort things out for themselves.

I've had to relinquish control and that took a long time to adjust to.

I simply don't have the energy to search for answers, to shop for particular items, to mend clothes, to research others problems, to physically do things for everyone else.

I have had to learn to be a little selfish! I'm not the first to offer my services any more. I will sit and watch my husband cleaning if I don't feel up to helping out. I try to encourage my kids to be self-sufficient, I advise them but I don't take over (I hope). I know my limitations, I know that I cant do everything. I choose my battles, I don't fight everything that I don't like, I let some things go over my head. I don't have the energy for perfection any more.

My consultant told me that FM generally strikes a certain kind of person, the person who's too nice. The person who's too helpful, too reliable, the 'go to' person. He also  told me that some employers set out to identify potential employees with these personality traits, and that as a consequence company sickness levels are much higher in those organisations.

I hope this doesn't read as being pompous or as blowing my own trumpet, that's not my intention. I just wanted to share this really valuable lesson that I've had to come to terms with.

So now I have another adjustment to make, I have to learn not to feel so guilty about putting myself first, but that's a whole 'nother story!

Keep smiling and be strong.

It's Getting Closer, Are You Ready?

It's getting quite exciting, May 12th Awareness Day is fast approaching.

Our preparations are well underway.

I've ordered jam jars and a purple light. I've bought purple t-shirts and a purple onesie for my granddaughter.

I just need jar labels, which my lovely hubby is going to be designing for me this week.

Oh and talking of Rob, I also need an extra large purple t-shirt for him to wear yet.

It's great to see so many people and organisations coming together to raise awareness in various ways. There's so much choice, that just when I think I've got my plan, someone else comes up with an idea that I want to join as well.

Someone told me they are making purple ribbons for their family and friends to wear. That's a great idea, and so easy to do. But will that overload me?

I'm already spending Sunday the 11th in Pyjamas making jam with the family! We'll all be wearing purple on Monday the 12th and I've registered for the Blog Bomb and the Twitter Thunder Clap! Plus I'm lighting up the house with purple light too.

It looks like my Awareness Day's going to go on all week!

It'll be well worth it though; the more people are aware of these horrible, invisible illnesses, the more understanding and support us sufferers will receive.

So, my plans are made, what's yours? What are you doing for May 12th? Every little helps, so even if it's only wearing purple, and spreading the word, go for it! I'd love to hear what you're all doing, perhaps leave me a comment?

Are you ready?

Be strong.

Count Down to May 12th.

It's fabulous to see so much activity and so many people helping to raise awareness of FM amongst other invisible illnesses.

In fact there's been so many different events and fundraising ideas that I thought it might help if I prepared the following summary.

So, these are the the invisible illnesses that we are all trying to raise awareness of:

FM - Fibromyalgia
ME - Myalgic encephalomyelitis
CFS - Chronic fatigue syndrome
MCS - Multiple chemical sensitivity
Lyme - Lyme disease

These are the events taking place which you can support:

• Jamming in Jim Jams - this is my own event, I will be making jam in my pjs, with my husband, daughter and granddaughter on May 11th. you can sponsor us at http://justgiving.com/dawn-derraven. I'm donating money raised to The Big Sleep for ME.

• The Big Sleep for ME - event being run by Invest In ME on May 12th. Arrange your own sleep inspired event or sponsor one that's already planned. More details at www.thebigsleepforme.com.

• Light Up The Night for Awareness - event being co-ordinated by www.facebook.com/may12th.awareness. Light up your homes and / or local landmarks in the colour of your choice; blue, green or purple.

• Wear Purple and Spread the Word - event being arranged by Trish Gray, tell at least one person that you have or know someone with FM / CFS / ME and encourage them to do the same, wearing purple ( FM) and / or blue (CFS / ME) to demonstrate support on May 12th. More details at https://www.facebook.com/trish.fighter.gray/events.

• Blue Sunday 11th May - event being run by Life in the slow lane with M.E. This is an online tea party, more details at www.lifeintheslowlanewithme.blogspot.com.

• Princess and M.E. - this is also an event being co-ordinated by Life in the slow lane with M.E. Anna and some of her friends are spending the 12th of May in bed dressed as princesses. More details at www.justgiving.com/teams/meprincesses.

• May 12th Blog Bomb - being co-ordinated by http://www.sallyjustme.blogspot.com. Sally in encouraging all bloggers to write about ME / FM / CFS and publish on the 12th of May to help raise awareness.

If you or someone you know has any other events arranged and would like them included in this summary, please email me the details on fibromyalgia.dee@hotmail.co.uk.

This information has been collated to the best of my knowledge, I apologise for any errors but hope that this information helps in our aim to raise awareness.

Be strong!

ME / FM Awareness May 11th / 12th

It's important to maintain awareness and raise funds to help research for these invisible illnesses.

I've seen FB and Tweets saying that FM is still not recognised in certain 'developed' areas of the world. I've seen some of my Fibro friends suffering not only from the illness but also from prejudice and insulting attitudes and I've seen some of my Fibro friends struggling to cope with all the add on problems and symptoms that are associated with FM / ME.

It's not right, and it's not fair!

Excuse me while I rant a minute! Depression can often go hand in hand with ME / FM. However, in the UK there is little, almost no help, from the NHS / Government. I have experienced a friend who is suffering with extreme mental health issues but cannot get help because they aren't; under 18, physically disabled or homeless (yet). The only treatment available is through your GP. All state benefits have to be researched, hunted down and after pages and pages of forms you 'might' qualify. But how is someone who is suffering these debilitating mental health issues supposed to be in a fit state to make phone calls, attend appointments, understand forms, etc etc etc!

It's not right, and it's not fair!

Sorry, had to get that off my chest! Back to ME / FM.

I'm no longer able to help in many ways, so was really glad to find The Big Sleep for M.E. it's on the 12th of May the national awareness for ME and FM day, so I'm able to take part. Though my event Jamming in Jim Jams will be on Sunday the 11th of May.

Along with Rob, Amy and possibly our granddaughter, we're going to be Jamming in our Jim Jams!

We've never made jam before ( you didn't really think we were going to be singing did you lol), so we'll be posting pictures of our progress and of course selling the jam.

You can support us in 3 ways:

1. Go to www.justgiving.com/dawn-derraven and donate; every little helps.
2. Buy some jam, email me at fibromyalgia.dee@hotmail.co.uk.
3. Alternatively just like and share my blog; the more people who are aware, the more help and understanding there will be for sufferers.

Don't forget to keep an eye on my FB page on the 11th for picture progress updates.

Thanks to you all, keep smiling xxxxx

Going Back In Time.......

Previously when I've returned to my home town I've felt uncomfortable, this time I didn't.

I left the town where I grew up around 9 years ago, and now live about 200 miles west. I've gone back several times to visit family and have always felt a bit uncomfortable. I think amongst other things I was concerned about bumping into people that I didn't want to see.

However, this time it was different. We stayed in a hotel in Southend, a place where I used to take the children during the school holidays, and it brought back happy memories.

I used to take the kids to watch the Southend air show every year, they were happy times. The three of us, and my parents.

I then went into Basildon town centre; that's where I used to get anxious about bumping in to people. But this time, I felt relaxed, probably because Rob was with me.

I went to what used to be Allders, now Debenhams. I used to bring the kids in to town to meet my Mum and have lunch in Allders. That period of my life was very happy. It seemed to be sunny all the time, I'd get on the bus with 2 kids and a pushchair and just mooch around town with my Mum, it was lovely.

I even found myself looking at the other young mums with pushchairs, wondering if I knew them. Of course, I soon realised that actually I was more likely to have known the Grandma than the young Mum, as I'm 47 and not 23 which is how I was remembering myself.

Where has the last few years gone? It seems like only yesterday when I was packing up the house in Corringham, preparing to start my new life, yet it also seems like a different life time ago.

My 'kids', who I still picture as babies in prams, are both now in their twenties, but when I think of them I imagine they are still totally dependant on me! Of course that's not the case, they are in fact both independent, mature, centred young people with their own jobs, plans and futures.

I'm glad I'm no longer anxious about meeting people that I'd rather avoid. If it happens I'll deal with it (as long as I have Rob with me of course). I didn't do anything wrong, or anything to be ashamed of. In fact the people I'm referring to should look at themselves and consider how they behaved. I wonder if their consciences are clear? Whether they are or not is now irrelevant to me, I couldn't care less; after all that was exactly how they treated me; they didn't care when I needed them!

Please don't think I'm angry, I'm not! I'm just rationalising my memories.

Be strong!

Many brains make bright ideas!

Thanks for reading my blog, I'm looking for your help. I'd like to take part in The Big Sleep for ME but I can't decide what I can do. (www.thebigsleepforme.com)

It has to be something that requires little energy, though I do have the support of Rob and Amy who are going to fundraise with me.

A whole day in my PJs is almost the norm for me, so I'd like to incorporate something else into our plans.

I'm not sure I can cope with lots of people around either, I think the noise will be too much.

I sound like a right old bore don't I? I'm sure others also feel like I do, that I'm old before my time! I read somewhere that FM adds around 20 years to your actual age, and I certainly feel a lot older than I actually am. Still that's a whole other story.

I'm thinking making and selling jam, but it doesn't feel very exciting. So I'd appreciate your ideas, what do you suggest I do to raise awareness and money for ME / FM?

All ideas welcome.......

What a week!

I feel like I've not quite been 'with it' at all this week.

I travelled to Liverpool and back, then down to Bournemouth for meetings for 3 days and then home again.

I had a migraine in Liverpool and its taken me all week to recover.

Sometimes, I feel like I'm watching myself from a distance. It's like an out of body experience. I can see myself moving more and more slowly, mumbling over my words, withdrawing into myself. I have a really calm exterior but inside I'm panicking; not screaming, cos that would take too much energy!

When I get to the stage when I don't have the energy to smile, talk, or think. When the effort of putting one foot in front of the other becomes too much of an effort, I know I have to stop. I have to get into bed, cover my eyes with my mask, put my meditation music on, take my meds and relax.

It feels so lovely to totally, absolutely relax. That feeling when nothing else matters, when the stress and strain drains from my body and flows away. It's bliss. It feels like I can breath freely again, the weight of every day problems falls away, are irrelevant.

That's when my battery's recharge.

That's what I need now.

I hope you are able to find the same feeling of total relaxation sometimes. It doesn't always work, I have to prepare and get my mind into the right state, and if the pains too bad, I can't find relaxation.

But it does happen most of the time, perhaps I'm lucky? How do you relax?

Here's to recharged batteries.

Keep smiling

Dee

Plan to be Spontaneous.

I'm always being told to chill out, stop worrying, relax! My son told me just an hour ago, that I worry too much.

They are right of course, but it's easier said than done. I'd love to be laid back, to take everything in my stride, to have nothing faze me, but that's not me.

Yes, I over analyse, I over think, I over plan and over prepare. The thought of attending a meeting without being 100 percent prepared for any eventuality, fills me with absolute dread. It even gives me nightmares.

There are particular deadlines in my job that are finite, it's black and white, if you miss the deadline, you miss the business. When I know that there's one coming up I'm on tender hooks even though its normally not within my control, I have colleagues who are on the front line of these deadlines, ultimately it's not my responsibility.

There was a huge deadline today, and guess what....... I had a migraine. Surprise, surprise. Who'd have thought it!

I tried to explain to Rob and Amy a couple of weeks ago about why I need to prepare and can't just drop everything and 'pop' out for a bit. Of course I used spoons! They got it. Particularly Rob, who sometimes does find it difficult to understand my illness. It's not for want of trying as he's been looking after me for quite some time but every now and again we have a little breakthrough when I'm more able to explain and Robs able to understand.

If I know I am going to be busy at the end of the week I tend to rest more before and after. We've got a weekend away coming up so I've booked the Friday and Monday off work so that I can cope.

It's very frustrating, when Rob says let's go out tonight, and I have to say no, because I haven't had a nap in the afternoon, so the last thing I can imagine doing is getting out of my slouchy pjs to go out in the cold.

So, the only way I can be spontaneous, is to plan ahead! Whether you consider that to be cheating, ruining the moment or just an oxymoron ( get me using big words!) I'm afraid that is how it has to be. So please bear with me while I research, prepare, consider and plan, and then we can 'do lunch'.

Be strong!

It Will Pass

Sleep - 5

Pain - 4

Migraine - 2

Fibrofog - 3

IBS - 3

Tiredness - 5

(1=minimal, 5=chronic)

Hello everyone

Apologies for being absent for so long, much has happened. In particular, my daughter, my friend and my secretary (lol) has moved away for an exciting job ( so proud ).  She comes home every other weekend which is fabulous, so I'm back to writing my own blog!  I'm afraid it will be less frequent, so please bear with me.

I was determined to see my husband perform in a charity do on Thursday evening. This is absolutely unheard of. Not only would it be a late night but also during the week. It was also a sell out, so I 'booked' a chair, made sure I had someone to sit with and kept to drinking water all night. I decided that I miss so much that I would be there come hell or high water.

It was a fantastic night, I laughed harder than I'd laughed for ages. It was lovely to be in the company of family and friends after having missed out on so many other events.

I even managed to have 2, yes 2, slow "dances" with my wonderful hubby. Ok, so we hardly moved, and we danced in the corner of the room instead of on the packed dance floor. But it felt fabulous.

However, of course, I paid for it afterwards. In fact by about 11.30 pm my left eye lid started drooping. This is a new symptom, not one I've ever experienced before and it was a little scary. Thankfully, by the morning it was back to normal. I worked from home Friday, and didn't feel too bad. 

It's quite normal for me to spend all weekend in bed, and this weekend was no different. The tiredness and pain was higher than normal. 

Saturday night I struggled to sleep and actually felt so tired that I worried that my body would give up breathing while I was asleep, because breathing felt like such an effort. My hips, my neck, my scalp, my legs; they all hurt.

Rob ( hubby ) always comforts me with "it'll pass" and he's always right, it does.

That's become our mantra; it will pass, it will pass, it WILL pass!

So, I've relied more than normal on my 'Classics for Meditation,' blackout eye mask, neck support, pain relief. But more than anything I'll continue to rely on my Rob and my lovely family to keep me going in mind, body and spirit!

Keep smiling x