Monday, 6 May 2013

~*Please Support the Big Shave!!*~

Hi everyone,

I wanted to let you all know about a charity event I'm taking part in during M.E. awareness week this month. On the week of the 12-18th May, several people with ME, myself included, are shaving our heads. We're doing it to raise funds for two ME charities, my personal favourites: The 25% Group, and Invest in ME. :)

I want to ask all my followers here to really get behind this event, by sponsoring us, of course, if you're able.... but also by sharing this event with friends, family, and your social networks, or posting about it on your blogs and websites. We really want to use this event to raise awareness of ME, and of its affect on the lives of those living with it! We hope that such drastic action as shaving our heads (especially given that most of us are girls!!) will inspire people to read about the truth of ME, rather than just accept what they read in the media. I do feel that, just possibly, the tide is beginning to turn here in the uk, there having been more positive articles in the press and more biological research widely(ish) publicised than I've ever seen before, over the last few months (though they are still disproportional to the negative ones, sadly). I can only hope that this positive trend will continue, and grow, and that more people than ever will learn the truth, and get behind ME sufferers and our families, to change the way we are treated in this country! I (and others taking part) have been struggling to find the energy to promote this event in any way. As you may have guessed from my online absence over the last few months, I've been particularly ill recently - so every second i spend working on this is affecting me negatively. As a result, anything you can do to spread the word, or bring in more sponsors, just seems like a huge gift to me, as its one less moment I need to spend pushing myself past my limits to get things done!!

Below, you can find my official Big Shave blurb, which you are welcome to post on your own sites! At the bottom of this post, you'll find all the information you'll need to securely donate to this cause. :) You can also visit the official Big Shave website at: where you'll find information about everyone taking part, about M.E. itself, the charities we are sponsoring, and about how to donate to them.

If you're feeling brave, and wish to join us In shaving your head, there's still time to get involved! Just contact us at and Amy (Or AngelSolace, as many of you may know her) will get you all set up!

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The Big Shave 2013 - Raising Desperately Needed Funds for M.E. Charities!

This was one of only 2 days in the last year when I was able to make it into my own back garden - a day to remember! :)
My Best Day of 2012 - One of Few.
"Hello, my name's Susannah Grace, I'm 37 years old and bed-bound with severe M.E. I first became ill in 1996 after a bad case of glandular fever. I was desperately ill for 6 months, finally returning to my training as a children's nurse, though every small effort I made was excruciating. When I completed my training, I began work as a neonatal intensive care nurse (which I absolutely loved!), and continued working there, at first full time, then gradually dropping my hours as I became sicker.

Several years later, I was hospitalised with an infection which caused my M.E. to relapse severely & I became housebound. I was managing to leave the house only a couple of times a year, in my wheelchair, with my carer until a few years ago when i became so ill that I became completely bed bound.

Over the past 17 years of my illness, I've come across an awful lot of misunderstandings and prejudice about M.E. in the general population, the media, and most disturbingly, within all the medical professions. I wanted to do something big to try and raise awareness and to promote understanding of this illness that has robbed so many of their lives. The Big Shave seemed like a brilliant way to do that, particularly as the charities being supported by it are the exact ones I would most like to help. This past year my condition has deteriorated, but when I heard from Amy about her plans for the Big Shave, I was determined to take part! It's something I can do from my bed, despite all my limitations!

This was one of only 2 days in the last year when I was able to make it into my own back garden - a day to remember! :)
A Normal Day for Me.
As someone suffering from a severe form of M.E. I have been a member of the 25% M.E. group for some time now. They were one of the first groups I had encountered online when I first tried to find others who were bed-bound like me and the group had a profound impact on me. Invest in ME have also helped me hugely. In fact, this year they came to my aid when I was having problems with social services in getting more help with my care situation. They took the time to send a letter and information to my social work department to help them understand my situation! I really want to support these organisations which have made such a huge impact on mine and many other people's lives. These charities have very little money coming in compared with others and really need our help to be able to continue providing vital services for people all over the country who are suffering from this illness.

I used to have pretty awesome hair and I loved getting it styled in different cuts and colours (red usually!). Nowadays, I'm not well enough to get to the hairdressers - all I can do now is just literally chop off my ponytail every so often to stop it getting too long! In actual fact, trying to keep my hair clean is a huge struggle for me, (to the point where I have ended up with dermatitis on my scalp) so in some practical ways, this move will really make life much easier. I have heard that some people bed-bound with severe M.E. have chosen to shave their heads because they just couldn't manage to keep it clean... so the Big Shave just seemed to be a perfect act of solidarity to those who are even sicker than I am!

My mum's lovely hairdresser, Alyson Tunstall, (who also shaved my mum's hair when it started to fall out during chemo) has agreed to come to my house to shave mine all off for the Big Shave! On Tuesday 14th at 8pm. (Well, actually, I'm getting a buzz cut, since shaving would irritate my skin too much. I'm quite nervous about it - it's a huge step for a girl to take, especially, but am totally going for it to raise as much money as I can for this brilliant event... So please give generously to these charities! There is some information about M.E. on this site (click the 'About ME' link at the top of the page!) - please read it and share it with friends, to help us raise awareness and promote understanding, too!

The last 9 years particularly have been a great struggle, but over that time, I've managed to keep hope alive, and found that, that is the greatest survival mechanism one could foster! When I'm up to it, I like to work on my blog (, where I write about living with very severe M.E. to raise awareness and to try to offer hope and encouragement to others struggling with chronic illness. If you're interested in learning more about M.E. or in hearing more of my story, please feel free to check it out!

Thanks so much for your support, it really does mean the world to me, and it's going to help so many people!"

[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” — Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

To donate to my Big Shave, you can either:

Text in your donations by texting:
TBSG99 £5 to 70070 to sponsor the 25% Group today.
TBSI99 £5 to 70070 to sponsor Invest in ME today.


Give online securely, via Just Giving:

To sponsor Invest in ME -
To sponsor the 25% Group -

You can choose which charity to give to, or even give to both!!!

Please let me know if you send in a donation, so that I can add you to my info. If you're a uk tax payer, gift aid is available, if you provide your postcode. :) If you live in Liverpool, you can also donate in cash - just contact me or my family! I'd love to know if you post about The Big Shave on your own sites, too! Just leave a message here on this post, or email me at

Thank you all so much for your support, you have no idea how much I appreciate it!

Visit the 25% Group website to find out more about how this charity is helping people with ME in the uk!
Visit the Invest in ME website to find out more about how this charity is helping people with ME in the uk!

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Tuesday, 6 November 2012

Remembering Emily Collingridge

Emily Collingridge
1981 - 2012

Emily Collingridge's funeral will take place today, Tuesday, 6th November 2012 at 12.45pm. My thoughts and heart are with the family today, and I wanted to just remember Emily here, and the brave fight she fought, for so many years, with the monster that is M.E.!! Thank you Emily for all that you shared with us about your life, all that you taught me, and for all that you were as a person. You will be sorely missed by many, and are a huge loss for our community of people with ME, and 'Spoonies' in general. We will not forget!!

If you would like to learn more about Emily's life with Myalgic Encephalomyelitis, please visit

The following is a copy of the information given by Emily's parents for all Emily's friends & supporters, copied with permission. There are some things listed that you can do today to pay tribute to her life. Let's stand together as a community to remember and honour Emily!

Her parents, Jane and Jim, wish for it to be a private ceremony but say, “We know that people will be thinking about Emily and holding her in their hearts as they are so touchingly doing at the moment."

As many people will want to pay tribute to Emily, the following suggestions for a virtual funeral have been put forward by some of her friends and approved by her parents:

1) Light a candle at some point on the day of the funeral. For those too ill to tolerate candlelight, a picture of a candle could be looked at instead, or a candle simply imagined.

2) Read, or have read to you, some of the pieces below. In the first Emily's mother, Jane, shares her memories of Emily. Two quotes have also been chosen as reflecting Emily's spirit. All can be found below.

As Emily was a dedicated campaigner, we also suggest the following as a means of raising awareness of ME:

3) Change your Facebook profile photo (and cover photo if you are on Timeline) to the rose picture below. This can be done on the day of the funeral or before. A suggested caption for the photo is: 'In memory of Emily Collingridge' with the web link: (If you are unable to copy the rose picture from this document, it can also be found at: To add a caption, go to your profile picture and click where it says 'Edit')

4) Share on your Facebook profile the Guardian article about Emily. This has been chosen because it gives a good overview of severe ME, and includes links to the moving piece "Emily's Appeal" that Emily wrote last year, as well as a link to the website of her book. (If you cannot click through from this link, the quickest way to reach the article is to Google: Emily Collingridge Scott Harris. Scroll down to the end of the article and there is an option to share it.) Remember that people are more likely to read it if you include a short message explaining its importance to you.

5) Donate a copy of Emily's acclaimed book, Severe ME/CFS: A Guide to Living, to your local library, hospital, doctor's surgery, or anywhere else where it can help patients with severe ME and those involved in their care

Jane and Jim request that no flowers be sent for the funeral. Donations in lieu of flowers, if desired, can be made to ME Research UK either direct or through the funeral directors: Francis Chappell & Sons, 41 Sydenham Road, London, SE26 5EX

Jane shares her memories of Emily:


Emily was one of eleven babies born on a memorable and busy Good Friday at Dulwich Hospital in 1981.. She came out looking rather squashed and for the first 24 hours slept peacefully leading to her father commenting on what a good baby she was. That didn’t last. For the next few years it was a question of ships that passed in the night as she toddled in to Mummy and Daddy’s bedroom and Colly decamped to her bed!

I think Emily was born organised and quite early on could show her baby sitters how to do up her nappies. From the age of three she was certainly bossing me about and I couldn’t argue as she always seemed to show a great deal more common sense than me. Of course she continued to boss me particularly in the wrapping of Christmas presents, an art she perfected one year when I was called away on an emergency and she wrapped sixty gifts in three days.

Emily was sensitive and shy by nature, but this did not stop her enthusiasm for participating in life. Visits to the Sooty show and the pantomime found her up on stage belting out a song completely out of tune. Much to my incomprehension, unlike me, she did not enjoy dancing classes (though she later loved visits to the ballet) and like me she was no good at most sports apart from a love of cycling and swimming shared with her father. However, she was an ardent tennis fan; this dated back to the day she was trying to spot Mummy and Daddy on the television among the Wimbledon crowds and started asking Gan Gan, her beloved grandmother, all about the game. She also fancied Jonny Wilkinson well before he became famous, but claimed that this had nothing to do with her interest in rugby. She did not miss one England game the year we won the world cup when her screams of excitement sent our Westie, Bella, into a whirl of barking.

Though she was forced to leave school at fourteen because of ill health, Emily’s interest in learning and an enormous variety of subjects was in no way diminished. She educated herself. She was an avid reader and her head was always buzzing with ideas and the next project she wished to tackle. Her way with words was evident in her writing and when talking (which she could do at length and non-stop!). Charity PR had been her chosen career when she was at school and so the opportunity to do this for an ME charity (with tremendous success) when her ME was less severe, though often from bed, was perfect. She later did paid work for Home-Start. Campaigning was in her heart, not only for better awareness of ME, but many other causes. She was highly principled and would always stand up for the underdog. With the publication of her guide to living with severe ME her desire to help others was partially realised when it was greeted with enthusiasm and sold internationally.

Emily was lucky to have many wonderful friends which she largely made through her work and the ME world. She missed her dear schoolfriend, Lydia, whom she regarded as a sister, as Lydia is married to an American and lives in Kansas, but they remained very close and though she sadly never met them in person, she adored Lydia’s children.

I think Emily inherited traits in looks and temperament from both her father and me. But Emily was Emily – clever, feisty, passionate, fun, gutsy and very affectionate.. She tried to look after us as we tried to look after her. We loved her very much and she loved us very much and for that we are blessed.

- Jane Collingridge

Quotes that recall Emily's spirit:

"To laugh often and much; To win the respect of intelligent people and the affection of children; To earn the appreciation of honest critics and endure the betrayal of false friends; To appreciate beauty and to find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; To know that even one life has breathed easier because you have lived. This is to have succeeded."

- Ralph Waldo Emerson

"There is the courage that springs from battle fever, or from a desperate emergency. And there is a courage that is rooted in the acceptance of a dreadful circumstance and all that it entails -a courage that brings sanity and cheerfulness and hope to lives that could be utterly consumed by sorrow. This is the courage that endures. This is the greatest bravery."

- Pam Brown

This document can be downloaded and printed. Permission is given to repost it, but please do so sensitively and respectfully. Thank you.

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Tuesday, 24 July 2012

Fears and Potential

I'm a little freaked out by something that happened this week.

I've been needing to take naps during my usual waking hours (night-time) for the last few weeks, now. I'd almost go so far as to say that I feel like my balance is tipping back towards hypersomnia, after several years of generally more healthy sleeping patterns, with bouts of insomnia... Except that I've still had days recently when I've struggled with insomnia during the daytime, too.

Anyway, a couple of nights ago, I very suddenly really needed to go to sleep, and just couldn't keep my eyes open any more. (something which is not unusual right now) But as soon as I settled down, I began to have paralysis episodes, where I couldn't breathe or move for a little while, then would fall asleep, then jump wake again suddenly with the same issue. This happened several times in a cycle over about an hour, and i couldn't pull myself out of it... then just as suddenly, I was able to wake up properly again.

What is worrying me is not so much the episode itself, (though I can't deny it was frightening!) but the fact that I've experienced it before, just not for several years, since the worst period so far in my illness. (In fact I have quite a few symptoms cropping up which I haven't had since that time and I'm really concerned at what that might mean.) The period in question was when I was having both these 'sleep paralysis' episodes on a frequent basis, and also full or partial body paralysis sometimes lasting hours, often for days or more. At that time I required near to total care from my carer the majority of the time. I never want to go back to that level of severity and honestly, it's kind of frightening that I am beginning to re-experience some of those symptoms which I've been free from in over 4 years now!

photo by Meredith_Farmervia PhotoRee

It's particularly horrible given my current lack of medical support... although I guess the truth is that I didn't have much support the first time around either, plus, much less knowledge personally about my illness! I was at the time seeing an ME specialist who (although working in a clinic where the treatment options were only graded exercise and cognitive behavioural therapy) had enough knowledge of and belief in the physical symptoms of M.E. that he was able to to tell me that yes, these symptoms were found within the realms of severe ME. However no tests or assessments were arranged and I didn't have the self-confidence, knowledge, or energy to push for more. I was just grateful not to be told I was crazy - and at least I had someone who KNEW, you know???

I know that the only thing I can really do right now to try and stop things getting any worse, is to listen to my body's limits as much as possible, and rest when it tells me to - but that's just so incredibly frustrating!! I can't go back to where I was - I'm struggling to cope both physically and emotionally as it is, as is my carer. I just don't think I ... we, can go through that again. - especially now that I'm not living in my own home with just me and Anna anymore. I honestly can't imagine dealing with all that in a more public setting, even though it is family members.

I know I need to be as positive as possible, and hope for the best, but I also feel it would be foolish not to see the reality of my situation at the same time, to do what little I can both to prepare for it, AND to avoid it! Myalgic Encephalomyelitis is, after all, a waxing and waning illness. I haven't ever had a complete remission in the last 16 years, and I've been severe for 8 years, which statistically gives me a smaller chance of getting better and a greater chance of getting worse. Having no real medical care also goes against me as so many of my associated symptoms and illnesses are getting worse when it doesn't necessarily need to be the case.

So... The plan..?

Try not to let myself get too scared.
Don't bottle up my feelings because that only makes it harder not to be scared!
Rest, rest, rest!!
Try to resolve this GP situation and get myself some domicilliary care as soon as possible - if possible!
Rest, rest, rest!!!!!

If anyone has any better ideas, useful advice or info, or any thoughts in general, please let me know! :)

On the plus side, apparently my liaison at our GP surgery has been working on sorting out my situation there. She's meeting with the practice manager this week, then my carer is seeing my new dr on my behalf and then apparently I will be discussed in the next practice meeting. (kind of scary all this going on without any direct input from me, but it's got the potential to be the most positive thing that's happened in years in terms of my medical care, so I just have to let it roll and see how things pan out!

I wouldn't often ask this, but if you pray, please could you send some up for me? Not only for this situation to work out as well as it possibly can, and that I start getting some real and available medical care ... but for me, to not give up on hope and to have the strength to keep fighting this minute by minute fight. I really need this to work out because otherwise I really will be left with no medical care whatsoever, sigh! Thanks guys - you really are the best!!!!

This beautiful image, 'Birds of Hope' is by Cornelia Kopp via PhotoRee

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"Sometimes in the darkness, while wolves howl and we feel the cold touch of fear against our spine, a faraway light glimmers

Sometimes in the press and the chaos of the crowd, in the noise and the hurry, a soft voice whispers.

That light, that voice, is Hope.

Sometimes we feel as though trying to catch hold of it is like trying to dance with clouds or turn lead to gold, but its always there waiting to suddenly appear right in front of us. within our reach."

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Poem by Sarah-Louise Jordan, used with permission and much thanks!

Sarah has two blogs which I highly recommend you visit. The first, 'On a Long Road, Take Small Steps' is about her long journey with Severe Myalgic Encephalomyelitis. The Second, 'Life is Uncertain, Eat Dessert First' is her poetry blog - and I have to say, she is genuinely a talented poet & writer!!

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Saturday, 16 June 2012

The Saga (and I) Continue Wearily On

Things have gone from bad to worse with my GP issues, as I told you in my last post... And I have to say that I'm sick to my back teeth of talking about it, and thinking about it... round and round my head in circles that never go anywhere and can't resolve anything - but I know I can't stop yet because that means fully giving up.

To recap, my GP, in a sudden, dramatic, and unexpected move, has left the surgery. The patients (including myself and a large majority of the other 'vulnerable patients' who attend this surgery) are lost, and the staff are confused and shocked. She did no official handover to another doctor, so none of the other GP's know our situations or histories past what they can see in our notes. The surgery almost always refuse to do home visits, and I can barely get to my bathroom, never mind to the surgery, so how am I meant to get to know and trust another doctor, and they me? It's a ridiculous situation and one that just shouldn't happen short of the unexpected death of your doctor!)

Anna is currently trying to arrange to meet with the doctor who seems the best replacement & the practice manager, to figure out a way forward, but it's not fair to her that she's having to do something so stressful at a time when her health and her (severe) PTSD are flaring up badly, and when she's also having to adjust to this new dr herself, whilst dealing with a long term as yet undiagnosed health issue. I'm almost more angry about that than anything else, given how much Anna was already struggling, and the tendency of Dr's in the uk to presume a psychological cause for physical illness where a psychological issue already exists, as if they don't realise that, for example,  someone who is depressed or is Bipolar, can also develop MS or Cancer!! (really, how closed minded do you have to be to think that way???) Of course, I'm also now open to that kind of re-interpretation of my illness, which is probably my worst fear in all this. We know nothing about what kind of person this new Dr is, or what he knows or believes about ME... And that's just terrifying! My previous dr may have been borderline or actually neglectful, but at least she didn't try to force me into unhealthy, psychological treatments! There was some level of safety in that.

Complicating issues even further, I need this doctor to communicate with my Gynae doctor about my current condition. The manager over at that clinic thinks that I should get the Hysteroscopy (Did I tell you I need one? I have Poly Cystic Ovarian Syndrome which has been really flaring up over the last two years, and they want to check that nothing else is going on) done under anaesthetic, because among other issues, it would probably be impossible and definitely be extremely painful and difficult, to hold my legs up in stirrups for the length of time the op takes. However the consultant won't agree to this course of action before he has seen me to assess my condition. Anna has talked to the manager and let her know that if they insist on my going in to see him again just for that, that means 3 visits back to the hospital essentially just for one operation, (I will have to see the anaesthesiologist too, you see) which would mean double the exhaustion and recovery for me. She totally understood and suggested that if I can get my GP to contact the consultant stating that he believes I will need the anaesthetic, then that might suffice. Of course, my GP has never even met me, so how can he do this?? Even worse, he is currently on a 3 week holiday, so everything is completely on hold! So frustrating!!! The one hope I have is that I've requested a copy of the medical report the DWP doctor filled in for my recent DLA reassessment. Considering that I got the highest level possible in that benefit, we're thinking the medical report must have been a really good one. I'm hoping beyond hope that it is, and that we can use it to prove my case somewhat to my new GP and even to the Gynaecologist, if necessary. Seems so funny to me to be pinning hope on such a thing, since similar reports about me have in the past been terribly negative and presumed me to be a malingering liar. There's irony for you!

I opened my Blogger app wanting to write something uplifting and hopeful, but I found that I just don't have it in me, you know? I feel really flat and tired, emotionally. I've had enough of all this fighting. Every day is a struggle just to eat, sleep, get to the bathroom, brush my teeth, ignore the pain, and not go completely crazy trying - and I have little left over to figure out a way through this huge setback. It's just too much. Some days, hope, happiness & health feel so far away that it's like they exist in one reality and I in another. Things really shouldn't be this way. We shouldn't be alone in this! Doctors's should be a safe haven who care for and support us - not something to be feared. I can only hope and pray for all of us that one day, that will be our reality - preferably before this illness affects yet another generation!!


Oh hey, not to end on such a tragic note, here's a piece of sage wisdom and a reason to hope, imbued in me by reading Blackout by Mira Grant, & Alison Hewitt is Trapped by Madeleine Roux over the last week. Things could always be worse. We could be surrounded by a zombie hoard, just waiting for the chance to eat us! ;) There ya go. My work here is done! Way to rally, Susannah! ;)

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)