~*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: http://www.thebigshave2013.org/ 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 thebigshave2013@gmail.com and Amy (Or AngelSolace, as many of you may know her) will get you all set up!

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!

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 (www.thethingwithfeathers.me), 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. Or Give online securely, via Just Giving: To sponsor Invest in ME - http://www.thebigshave2013.org/2013/01/invest-in-me.html To sponsor the 25% Group - http://www.thebigshave2013.org/2013/01/25-me-group_29.html 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 susannah@thethingwithfeathers.me.

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

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! :)

~*Please Support the Big Shave!!*~

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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 http://www.severeme.info/about-emily.html

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: www.severeme.info/about-emily.html (If you are unable to copy the rose picture from this document, it can also be found at: http://bit.ly/RPeahY 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. http://www.guardian.co.uk/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome (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 http://www.severeme.info


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 http://www.meresearch.org.uk either direct or through the funeral directors: Francis Chappell & Sons, 41 Sydenham Road, London, SE26 5EX

Jane shares her memories of Emily:

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.

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! :)

Remembering Emily Collingridge

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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_Farmer	via 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

"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." 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!!

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! :)

Fears and Potential

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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!!

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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! ;)

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! :)

The Saga (and I) Continue Wearily On

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Abseiling for M.E.

The following is a guest post written by Rory Singer, and a plug for the abseil he is (bravely!!) doing for ME charity 'The Association of Young People with ME', for ME Awareness Week. Please help out with this cause if you can, and share this post on your social networking sites! :)

Hello, my name is Rory Singer and I am 15 years old, I have had M.E for 6 years. I am assuming you already know what M.E is if you are reading this blog but if you don’t know, M.E is a painful, disabling and isolating illness which affects an estimated 25,000 children and young people across the UK. Symptoms include extreme pain and fatigue in the muscles to the point of collapse, weakened immune systems and severe cognitive problems. (You can read more about it through the links in the 'ME Support & Info section of the right hand column)


Susannah, here at The Thing With Feathers, has ever so kindly let me have a space on her blog as part of M.E awareness week and that’s what I would like to talk to you about. Although it is improving, there is a great need for increased awareness of M.E and what it does, and I think awareness week is a great time for everyone to get involved and do as much as possible to create awareness for a misunderstood illness.

I have decided to do a charity abseil. With the support of my sister and a group of my friends, we are all abseiling down the Avon Gorge in Bristol to raise funds for the registered national children’s charity, AYME (The Association of Young People with M.E) (No.1082059) and to spread general awareness of M.E. AYME is dedicated to the emotional and practical support of children and young people with M.E and their families. Membership is free so AYME relies on fundraising events such as ours to keep its vital services running. If you would consider supporting us in our challenge for AYME, we would appreciate anything you are willing to give! Details on how to donate will be at the bottom. :)

Now back to what I was actually talking about, M.E awareness week.



So what, I hear you ask, can I do to help?? Well there are plenty of things you can do, as I am about to show you in the bullet pointed section below. I'm sure you can come up with many more ideas, too!!

• Shop online!!
  By shopping through this link 3-15% of the cost of your order will be donated automatically to Ayme!


• Ebay
  Got any old or unwanted items? Sell them on Ebay and donate some of the money to an M.E. charity.


• The Classic
  Shave your head, legs, eyebrows or (come on boys!) your chest for charity. This is an easy thing to do and its lots of fun and will get lots of people donating!!

So please visit our website at : Just Giving, where you will be able to safely sponsor my abseil! You can donate securely by credit card, Paypal, or even by text (!) - and gift aid is supported. The money goes directly to AYME, through Just Giving.

If you can share the links to this post and to my Just Giving site on Twitter, Facebook, & any other social networking sites you use, that would be amazing! And if you have any questions or just want to say hi, you can find me at @Rorysinger_ayme on Twitter, or http://www.facebook.com/rory.singer on Facebook.


Thanks for reading and again, a massive thanks to Susannah.
Hope to hear from you soon,
Rory Singer

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! :)

Abseiling for M.E.

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Even Caged Birds Sing!

I've been thinking more this week about the nature of grief, and about just how much those of us with severe chronic illnesses, especially those who are housebound & bedbound, actually lose. How much I have lost. How our dreams are smashed, our health, friends, careers are gone, our lives are torn apart & the path of our lives has been irrevocably diverted against our will. I believe that each of us, (and our close family & friends) having lost so much, goes through a process of grieving - one which may in some cases take years, or even be a constant presence in our lives - because each month, each year, more things may be taken from us, starting that process all over again. This grieving process can be made that much harder by the fact that so few people outside of the situation can really understand what we're going through, so a positive support network can be difficult to find.

This grief & loss is so extreme - it affects every single corner of our lives, and our hearts. There are so many things that we each, desperately, miss - and miss out on. It goes so much further than the obvious losses like our health, financial security & careers. We lose friends & family - and our relationships change drastically with the few we do not lose. We are locked away inside our houses, missing out on the fun activities, outings and holidays that our loved ones are able to go on. Some of us may not even be able to see the sun or feel the rain for years on end! We may begin to come up against ignorance & prejudice. Our love & sexual lives change, or sometimes are completely gone! For those who become ill at a young age, childhoods and educations are lost. Conversation becomes difficult or even impossible, meaning we may lose closeness with the people we love. Years disappear for us in almost a vacuum, whilst the lives of our loved ones carry on. Honestly, the list is endless - our bodies really do create a prison within which we are trapped!!

For many of us, especially those with neurological diseases, the things we've lost are now just distant, unfocused memories. Often hazy and difficult to remember or recall. To me, they seem like worlds away from my bed, in my bedroom, where I've been caged for so many years. To me, it literally feels like my past was lived by a completely different person!

The thing is, I believe that, that very grief - that endless depth of pain & suffering, and the daily battle we have to fight to survive it, gives us something very special in return: A deeper understanding of & connection to hope.

Maya Angelou's poem, I Know Why The Caged Bird Sings comes to mind. (You can read this poem in full, below) Reading it again, when I began writing this post, I resonated with the bird in her poem so strongly that it brought tears to my eyes and a slow, painful gasp to my chest! The poem is an analogy for the desperately painful, chillingly lonely, yet also forever hopeful plight of black people at the time of the author's childhood. It is about dreams squashed, and dreams as yet unrealised.

'Little Bird' by Rubyblossom	via PhotoRee

This poem is heart-rendingly sad ... but I don't believe it's about pain, or injustice quite so much as it is about hope - & the strength that we have hidden within us, enabling us to survive whatever comes our way! The hope of gaining freedom from binding circumstances. The hope that dreams will come true. This is the kind of hope and the depth of strength & courage that would move heaven and earth to gain what it most desired!

In the depth of winter, I finally learned that within me there lay an invincible summer. ~ Albert Camus ~

This poem, too, corresponds so strongly to the Emily Dickinson poem for which I named my blog, a poem which has meant a great deal to me. 'Hope is The Thing With Feathers' very much conjures up a beautiful, soaring, never-ending hope, whilst 'I Know Why the Caged Bird Sings', evokes a much more frustrated, desperate hope - but is all the more powerful for it! The hope of freedom surely is one of the most powerful of all hopes!!? It certainly is for me!!

I feel, very deeply inside my soul, a desperate voice dreaming of and hoping for freedom. That voice has never let me down, no matter how hard my struggles or how sick I've become - I still have the hope that things will get better. That one day, I'll ramble easily through a forest, or a meadow full of wildflowers, the sun shining on my face and my dogs at my feet. That I'll walk along the beach, the waves gently lapping at my feet, the wind blowing through my hair. Be able to venture outside in the snow, catching the snowflakes & watching them melt. I dream of falling in love & building a family. I want to adopt some older kids who are struggling in the foster system, or perhaps do emergency fostering. I even dream of having a baby, though age & infertility make it all but impossible now. (I think pregnancy is one of the most beautiful, interesting, amazing & challenging processes we can ever go through in life & I want to know how that feels!) I wish I could play in the sandpit with my nephew who I've barely seen more than a few hours in his two years of life, & easily hold his baby brother in my arms. I hope for days spent with family & friends with no restraints on my energy and no pain holding me back.

As it stands, statistically, I have little chance of a full recovery unless a breakthrough is made in the research of Myalgic Encephalomyelitis - but despite that, & like the singing caged bird, I do have the hope that somehow my life will change and that I will find freedom from the grips of this terrible illness. I accept the possibility of being severely ill for the rest of my life, but I hope for better - and no matter how hard the fight gets, I don't intend to give up on that. The point isn't in whether I ever reach my goals, or whether I recover from M.E. The point is that I need the hope that I will get there. It gives me the courage to continue, and helps me to find some level of contentedness & happiness in my present. I have goals & dreams, and no matter how scared I am that those things won't come to pass, I don't want to let go of them, & I'll fight for them! Simply put, I believe that there is no point to life without hope.

'We Must be Free' - By Nanda Correa
(Posted with Permission & Much Thanks!)

I know why the caged bird sings A free bird leaps on the back of the wind and floats downstream till the current ends and dips his wing in the orange sun's rays and dares to claim the sky. But a bird that stalks down his narrow cage can seldom see through his bars of rage his wings are clipped and his feet are tied so he opens his throat to sing. The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom. The free bird thinks of another breeze and the trade winds soft through the sighing trees and the fat worms waiting on a dawn-bright lawn and he names the sky his own. But a caged bird stands on the grave of dreams his shadow shouts on a nightmare scream his wings are clipped and his feet are tied so he opens his throat to sing. The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom. ~ Maya Angelou ~

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! :)

Even Caged Birds Sing!

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An Old Year Gone, a New Year Begun!

¸.•°˜”*°•.¸☆★☆¸.•°*”˜˜”*°•.¸☆★☆¸.•°*”˜”*°•.¸


I just wanted to take a brief moment to send some new year thoughts the way of you all, my readers & friends.


This has been a difficult and challenging year for me in so many ways, to say the least, but there has been an astonishing saving grace - my blossoming friendships with all of you!! I couldn't begin to know just how hard this year would've been had the ME & chronic illness community not opened it's arms, welcomed me in, and supported me through each of the many, many bumps in the road. (not to mention allowing me the privilege of doing the same for many of you!!) I honestly feel that all I've learned in the last 15yrs, of living from day to day, relying always on hope to strengthen me, might have fallen away if I hadn't had this grounding, and rooting, in our community.

I feel like I've found a new family, & it was the perfect timing, the perfect solution. It's been a long time since I felt so understood and accepted ... and whilst it's kind of a sad sign of our time, that so few of us find that support in our homes, families, work and social groups, I think it's incredible and rather wondrous that people in so much need themselves regularly take the time to encourage, support and love others in need!!!



If there's one resolution most of us probably need to make this year, it's to see the good, the selflessness, the strength and the courage in ourselves and be proud of it! We may be sick & disabled, we may lead very limited lives, society as a whole may think we have little to offer - but darn it, they're wrong!!!! We have so much to give. We are of priceless value, each of us completely and totally unique! So take a moment to look in the mirror, and see the real you - not the you society chooses to see - and be proud of, and yes, even love yourself!!!

"Be Yourself. Everyone Else is Taken!" ~ Oscar Wilde ~

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! :)

An Old Year Gone, a New Year Begun!

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Hope and Happiness Within the Storm....?

I've shared videos by Daisy before, which are always really inspiring and moving. She really knows how to straight talk, and how to talk from the heart in a way that can really reach people and show them the reality of the lives we lead, normally hidden away from view.

This one had quite a significant affect on me. I've really been struggling to cope emotionally recently. It's not really so much the disease that's been getting me down - though of course that's always a factor. It's more everything surrounding it. All the battles over healthcare, benefits, rights. All the prejudice, ignorance and hatred towards us. The way the system just doesn't 'fit' to our needs, and how much sicker that can end up making us. (Example, no GP home visits despite being bedbound) Hope can sometimes be extremely elusive when you're stuck in the middle of all that, at the same time as dealing with the daily pain of being seriously ill, and everything that brings.

Daisy, I'm sure, has as many bad days as me. I'm sure she has times where she just can't find the will to fight for hope. But like I have again and again during the course of my illness, she eventually fights her way back. In this video, created for the 'Britain in a Day' BBC project, she talks about finding a way to find happiness & beauty inside of this horrible, difficult bubble we live in. Coming from someone so young, (17) that almost makes an even stronger impact than it would from an adult. And she's right ... it really does come down to finding that 'do or die' attitude, to working our butts off to find what small happinesses and controls that we possibly can in our daily lives. And to not let all our possible futures cloud the present too much. I need to re-learn that ... and I sort of feel like this (and a couple of other things that have happened lately - see my last post, 'Can we Transform Pain & Despair into Beauty') are maybe a turning point to drag myself back up to a place of coping.

There can be beauty even in massive destruction!

So, here's Daisy's video. Share on, wherever and with whoever you can!!!

But living a life of regret would have kept me looking backwards, rather than forwards. Hope is forward leaning. It’s the ripple of energy that trusts there are resources enough to live into the future. I had to focus on what I could do, not what I could not. ~ Julie Neraas ~

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! :)

Hope and Happiness Within the Storm....?

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Can we Transform Pain and Despair into Beauty?

A few nights ago, my carer and I watched the movie 'Another Earth'. There's a scene in the movie that's stayed with me since. One of the main characters is telling a story to the other main character, who is in a great deal of pain in more ways than just the physical. (clip embedded below but I'll give a text version for those who can't view the video.)

The story is of a cosmonaut who is all alone in his space capsule, looking down at the curvature of the Earth, and is lost in that beautiful moment. But then a tap, tap, tap starts somewhere inside the capsule. He tries to stop it but cannot. Days go by, like torture, and he now knows that this repetitive sound would break him. Would drive him crazy before he will reach his destination.

She begins to tap on the table with a spoon, comparing her tapping to that inside the cosmonaut's capsule. The cosmonaut realised that his only chance is to fall in love with the sound. To, rather than let the repetitive tap be annoying, instead perceive it as music. So he shuts his eyes, goes into his imagination. Then he opens them, and he doesn't hear tapping anymore. He hears music! And throughout the rest of his journey, he floats through space in total peace and bliss!




I was watching this and wondering how much it could be applied to the things that pull us down, causing us pain, illness, & other struggles. Is it possible that we could make music and beauty from our pain? Could we, somehow, turn a switch in our brains that helps us to see things a different way?? Not a healing, because who can stop a storm in it's path? (excepting God) More ... to still be living with all the same pain we were only moments before - but to see it and feel it.... experience it differently, somehow?

I don't yet know the answer ... but I suspect that I would rather like to find out! I haven't been in a good place physically or emotionally recently. I want to climb out of it but it just seems impossible right now. I wish I could find a way to make it feel.... just not quite this bad, you know? To find comfort and rest within the turmoil of a storm of pain. To give myself an eye in that storm to wait it out for however long it lasts? Right now I feel like I'm living in the middle of a huge despair tornado, so I really would love for this to be possible! I do believe the brain, especially when combined with hope, is an amazing thing, capable of so much more than we know. Maybe it is possible to find a way to change our perception or our perspective! After all ... if you're on the inside of the storm pictured above, it would seem ugly and violent in the extreme, not to mention completely unforgiving. From above, though, in space, it's breathtakingly beautiful!!!

Oooh! Didn't I just get all meta-physical on you!! ;)

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! :)

Can we Transform Pain and Despair into Beauty?

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Scared of the Stigma of Being Mentally Ill...??

I'm sitting here thinking about Simon Wessely's much broadcast view that people with ME are simply scared of the stigma of being labelled as mentally ill. That, that is why we won't accept that our illness isn't psychological. I'm considering the oaths that doctors take at the beginnings of their career - and seeing clearly that the psychiatrists who have so terribly treated people with ME have broken almost every one of them in one shape or another. And I'm wondering how much it was those broken oaths that got us to the position where an ME patients' doctor can think that it's ok to neglect to reply to communications for weeks, even months at a time. Where the patients are responsible for their own biological research funded if they ever want to know what's really happening to their bodies, never mind get treatment for it. Where patients and their carer's constantly have to fight to get basic care needs met. Where promises are consistently broken by our medical teams. Worse, where the opinions of the few have become the feelings of the many, via the very clever media manipulations on the subject of M.E., that have been a constant in the UK for decades now, thus negatively affecting our treatment by insurance companies, welfare state, families and the wider society!

Dr's take an oath to do no harm - in fact, to do good; to protect the health of their patients; (interestingly, and perhaps key for us as ME patients, they are expected to make the care of their patients come first, above and beyond the needs of the Trust, NHS, or society!!); to keep their own professional knowledge up to date; to respect the dignity of patients, politely & considerately. To be open, honest, and to act with integrity; to never discriminate, and so much more. I just have to wonder why, how they would then think it ok to treat us the way they do, just because of their personal feelings, or because of what the NHS's stance is on that patient's specific diagnosis? How, in the case of my own doctor at least, can she genuinely not see that she is in fact being neglectful?? Because despite the fact that she has been making some efforts to improve things, the care I'm given still doesn't even barely reach that which a person this ill with most other diseases would receive.

How is it, in fact, that in our society, different diseases are somehow given different status. 'The Big C' of course is given the most respect, patients awarded as much care as humanly possible (in the majority of cases, at least - there are always sad exceptions) - M.E. is awarded the very special status of having the least respect, to my knowledge. It's victims are actually made the laughing stock of the medical community and the media. Illness just isn't simply illness anymore!


Professor Wessely has many times now made the case in the media that ME patients refuse to accept the psychiatric model of ME because we're scared of the stigma of mental illness. What a joke! I face stigma every day worse than that of someone with a mental illness, because as well as being viewed as just a label, treated with disrespect & ignorance, I am also treated as though my illness in fact doesn't even exist. (Which would not be true even if ME was a psychiatric disorder, since that by definition IS real!) My physical symptoms and disability are downplayed, ignored or disregarded, often completely disbelieved. Everything I say, do, believe, and am, is up for grabs for doctors to pounce upon as a reason why I am not as important as a patient with a real illness and why what I say about my illness, body & life can't be true. I've spent the last 15 years being neglected in a very real way, given little or no treatment, even where tests have proven some physical problem. I am not even given the majority of the tests and treatments recommended by international specialists for my very real illness. In essence I am just left to rot, along with everyone else with this diagnosis. And this isn't just my experience! Hundreds of thousands of ME patients in the UK have had this kind of experience, or much, much worse. Millions worldwide are little better off.

I truely believe that I would have a much, much easier time accepting a diagnosis of depression, borderline personality disorder, obsessive compulsive disorder, etc than I do dealing with what ME has done to me, to my life, and to the lives of my loved ones. I know many people still hold a stigma against things and people they don't understand and this makes life often really, really difficult for people with psychiatric disorders, and I don't want for a minute to downplay the agony many of those people face! - But I'm a nurse and I personally have no issue with people who are mentally ill - I find them in main very brave survivors! I refuse to stigmatise them for what is real illness. They're all human beings just like me and you - none of us perfect in any sense of the word. So the question remains: why should I be afraid to be part of that group? The truth is, I'm genuinely not any more scared of that than I would be of developing any other illness I might experience in my life! That's not to say that it wouldn't be scary and very hard indeed at times or that I wouldn't have to face stigma if I was in that position - of course it would be, and I would - but it's my opinion that it's harder in this current society to have a diagnosis of M.E. than it would be to have been diagnosed with the majority of mental illnesses, both because of the stigma, and because of the illness itself and the destruction it's wrought on my life.


What I do take issue with, what I am afraid of, is my reality of having a real, proveable, disabling physical illness (which cannot even begin to be explained by Wessely's definition of ME as an 'illness belief') be ignored and left untreated. Illness beliefs do not cause tachycardia's, palpitations, blood pressure imbalances, fainting, weird and wonderful blood test results, limbs that go literally blue when you are merely sitting, paralysis, temperature & sleep disorders, sensory overload, severe chronic pain, body clock reversal, and all the other things I, and many other severe ME patients have going on. (I personally have a scary list of symptoms several pages long, which probably makes me look like I'm completely mad when I hand it to a doctor, lol!)

photo by ValetheKid	via PhotoRee

Illness beliefs don't cause people to become literally bedbound, struggling even to go to the bathroom a couple of times a day - never mind to only be physically able to have a shower once a week!!! (If you've never tried it, don't bother - it sucks as much as you might think it would, and worse!!) They wouldn't cause tens of thousands of people, in this country alone, to lose their careers, social lives, personal hygiene, healthy bank balances, their homes, friends, and sometimes even their families. They sure don't make you choose to endure the degradation & humiliation that comes with needing personal care such as help having a bath, or someone having to cut your food up before meals, or even to have their carer's need to feed it to them like a young child!! In addition, I take issue with the fact that these doctors, treating us so neglectfully, or downright mistreating us, all swore an oath to do no harm!!! That is the most important vow a doctor takes, yet the one most ignored when treating patients with Myalgic Encephalomyelitis!!

It's a very, very rare psychiatric illness that could cause such enforced human misery in a person and such a terrible quality of life for it's sufferers - and moreso, I simply don't believe that an ilness belief could cause that suffering on the scale of what we are seeing with cases of Severe ME, where 25% of people with this diagnosis are housebound or bedbound, often for years or decades at a time!! What's more, it makes no sense that those people all would be struck down by an illness which follows such an extremely similar pattern (usually despite a previous lack of knowledge about ME on the part of the patient), and in fact has often occured in clusters! To my mind, there are so many obvious points that make it absolutely inconcievable that this illness could be concocted in our minds somehow. This many people (hundred's of thousands in the UK alone, of all ages!!) would not choose to live in such conditions, if they had any choice in the matter - especially people who in previous lives pushed themselves regularly to their limits, fully enjoying their life, freedom, & health.


So no, Professor Wessely, I am not afraid to accept the stigma of having a mental illness. I'm simply afraid (not to mention disgusted) that the environment you helped to create in this country (and beyond!) is neglecting & mistreating people on such a massive scale. I'm angry that one group of doctors, headed by one man has changed public perception to see only their personal opinions, despite the fact that they are not backed up by international science/research. I'm angry that the majority of journalists reporting on M.E. seem only interested in catchy headlines, not truth. And I'm angry that I am one of those forgotten, abandoned, invisible people & that I cannot even enjoy the most basic of beauties, such as the sun, trapped in these four walls with dimmed light, as I am. I'm frustrated that for 15 years, I've had so little real medical support that I now have to do all the research into my condition myself, despite the consequences for my health, because there is no doctor specialised enough, or willing enough, in my area to do it for me - few, in fact, in the whole of the UK. And quite honestly, I'm terribly afraid that these situations & prejudices will not soon change for us, no matter how hard we fight them, as they are deeply ingrained in the public mind, thanks to your media tinkerings! I just wish you and those who agree with you would try to understand that unless you have walked a mile in our shoes, (or in my case, simply stand up, still, for a few minutes - that'd be plenty to show you how bad it gets!!) then you can't possibly understand just how real and destructive this disease really is - though truthfully, I wouldn't wish even those few minutes of this disease on even you, Professor Wessely - No-one deserves this!!!!

If you're reading this and all you know about Myalgic Encephalomyelitis is what you've read in the media, please find out more from reliable sources! Until you've really educated yourself, you can't take the word of a journalist or even a doctor as truth! So don't judge us based on what you read in the papers - after all, you never know when you might find yourself walking in our shoes too, and I'm certain that if you did contract M.E., you wouldn't want to be judged like that either!!

There are many links in my sidebar to great sites & books about M.E. that will help you to understand what it really is, and how it affects the people living with it. I particularly recommend the book Lost Voices which tells the story of many ME sufferers and their families in a really easy to read format. There are also many wonderful people in the ME community who would be willing to talk with you. I know I would love to help you really understand! Once you've read up, then speak out for us too. Educate your friends and family! It's only by us all working together, sick & well alike, to end this stigma and medical ignorance, that things can ever change! Thank you so much!! :)

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! :)

Scared of the Stigma of Being Mentally Ill...??

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The Law of Sod!

Somehow it came as no surprise to me when I was being hooked up for my Tilt Table Test on Friday, that the computer decided it wasn't going to play nice, and the test had to be cancelled! I seem to attract this kind of incident on a regular basis, for some reason or another, lol!!!

So, the upshot is that I have to go back to the hospital again, at the end of November, meaning another appointment to deal with in amongst all the others I have between now and Christmas. Blah. I feel kind of upset about it to be honest - but what can you do?? Crap happens and you just have to deal with it when it does!

The rest of the tests went ok - had the echo (boobs flapping in the wind wasn't my idea of fun any more than the tilt table test is going to be, but ya gotta do what ya gotta do) and they fitted me for the 24 hour holter test, which was fine except my silly sensitive skin reacted to the electrodes and by the time I removed them today, I was covered in blisters and welts. Nice. :p

The going out of it all was the rough part. Seems like every appointment I go to, it's getting harder and harder to maintain the energy I need, and taking more time to recover afterwards. It's nothing I didn't expect but that doesn't make it nice to live through. This one was especially hard though. I was picked up by ambulance and rode to the hospital (and into the clinic) on a stretcher, which was great for obvious reasons. During the appointment however they had me sitting up for quite some time while they tried to fix the equipment. I was too wussy to object and they had chucked Anna out of the room (it's their policy not to allow visitors in the room while they do Tilt Table Tests just in case something goes wrong and they have to resuscitate you.) so she couldn't advocate for me. (That turned out to be quite a problem because when my neuro symptoms kicked in because I was sitting and getting exhausted, I kept forgetting words and my train of thought. Had Anna been in the room she could have communicated for me. I think when I go back I need to insist on her being in the room for that reason because I know when I am standing on the table it's only going to get more and more difficult to communicate!!!) Anyway, I was just about coping and I did eventually ask to lie down.

Unfortunately though, the clinic appeared not to know what to do with me once the apppointment was finished. A porter took me to the ambulance pick up station on a wheelchair and left me there. Apparently what should have happened is I should have stayed at the clinic on a stretcher/bed and waited for the ambulance guys to come back and pick me up. Instead what happened was I was left there, sitting up for over an hour before the ambulance finally arrived. By that point I could barely talk, had had to put my eye mask on because I couldn't deal with the light anymore, even with my shades on (you have NO idea how vulnerable and how embarrassing that is to do in public!!!), I was in so much pain I was near tears (VERY unusual for me), I was shaking like a leaf, and they had to all but lift me onto the stretcher to get me into the ambulance!!

All in all, a pretty horrible experience and not one I want to repeat! I'm going to have to get better at sticking up for my own needs and not letting anyone put me in a position I can't physically handle! I think before I go back in November, I'm going to ask Anna to call them and arrange in advance that I stay at the clinic until the ambulance comes for me with a stretcher, and insist nicely that she be allowed to be with me in the room while I have the test, to communicate for me. I know I'm getting better at meeting my own needs, but I still really struggle with asking other people too as well. I guess that old adage about Doctor's and Nurse's making the worst patients must be true, lol!



Please note : This post is an update to my previous post, Terrifying Tilt Table Test Tomorrow!

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! :)

The Law of Sod!

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Terrifying Tilt Table Test Tomorrow!

Like my alliteration? ;) Lol - I know, I know - so sad! Heh. Ok, on to the serious stuff.......

I'm really getting nervous about the Tilt Table Test tomorrow!!!! It's kind of ironic really that I'm afraid it will be a horrible, painful, exhausting process and that my results will be strongly indicative of POTS ; but equally, scared that all the results will be perfectly normal and they'll say I'm absolutely fine!

It's the default thought pattern I go to with things like this. From what I've read on other blogs in the ME & Dysautonomia community, it seems to be fairly normal for us to feel that way - and it makes sense if you think about it. Our medical histories are splattered with complex symptomology, doctors who didn't understand or believe us, and tests with normal or borderline results. (In main because they generally don't give us the right tests, particularly in the UK where doctors are actually taught not to order medical tests for their ME patients!!) So our default feelings about such things are fear and trepidation that once again we won't be believed - no matter how much we know we are extremely ill and really need help. In this specific case, I am as certain as I can be that I have POTS, because a) my symptoms so obviously match up, and b) the poor man's tilt table test showed very obvious results that could only really mean POTS so far as I'm aware. But I still don't trust the hands of doctors, after so many years of facing ignorance and prejudice. And in all honesty, I can't say I blame me!!

Can I just hide instead of going, tomorrow???

photo by Annemarie Vriends	via PhotoRee

I'm so worried that not only will this tilt table be a massive physical challenge, but also that it will trigger my abuse issues while it's at it!! Being so out of control, strapped to a table, is not my idea of fun, put it that way! (Though I believe my arms will be free, thank god!!! Being completely pinned down and totally vulnerable would be too much!) I'm also so relieved that Anna will be there with me - I don't think I could handle it alone, and I hope she knows how grateful I am that she's taking a day off uni, where she's only just begun her PhD two weeks ago! Another plus is that we were able to organise an ambulance transport for tomorrow, so hopefully that will make things easier.

Sigh. Anyway - just a teeny tiny post this time (well, by my rambling standards anyway, lol!!) as I'm not having a great week. I had to come off the salt tablets because the side affects were just getting worse and worse, and well, I guess they were helping to some extent, because I've been pretty much floored for several days now. I'm going to try to get some advise about it when I'm at the clinic tomorrow, though I'm not scheduled for an actual consultation with any of the doctors while I'm there - at least, not to my knowledge.

I hope you're all doing ok, and looking after yourselves. I know so many of us have been affected over the last couple of weeks both by the death of Amberlin Wu, who was a big part of this community and friend to many of my friends, though I didn't know her very well myself - and by everything going on at the Whittemore Peterson Institute. It's really been a horrible time, and I'm thinking of you all. x ♡ x



Update : 16th Oct
I didn't have the tilt table test in the end, because their computer decided it wasn't going to play nice and wouldn't work. I posted an update here : The Law of Sod!

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! :)

Terrifying Tilt Table Test Tomorrow!

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