The Universe Just Keeps on Giving! :P

Unfortunately, those gifts just aren't always good!!! Sigh.

We just found out today that my GP has suddenly up and left the surgery, with no warning whatsoever to patients (and according to my liaison at the surgery, it was a complete shock to the staff there, too!) and no obvious dr to switch to within the practice, for those patients who only ever saw the Dr who has left, because she was easily the best Dr in the practice and one of the better Dr's in the area.

I have had my problems with this Dr, but most of them were as a result of the area we live in and the restraints of the practice she worked for, rather than her being a really bad doctor ... But despite all that, I'm feeling a bit panicked about this situation!! She was the only Dr there who knows anything really about my condition, and about our situation here at home. (and how would a new GP get to know me when they refuse to do home visits 99% of the time, and I cannot get to the surgery???) She was also treating Anna who has been very ill for a couple of years, again with quite a complex condition. (Anna has Post Traumatic Stress Disorder, too, and really relied on our doctor to be sensitive to that. She's been crying on and off all day, she's so upset about this - which makes me so mad, I can't even tell you!!!) I know, too, that the Dr treated quite a few other very vulnerable patients, so she has left us all very much in the lurch. I feel really quite angry that she gave us no warning at all, and that she apparently hasn't formally handed us over to any other doctor. To me, that is really, really unprofessional!! She was the only Dr I had even a small amount of trust in at the surgery ... And I honestly have no idea what Anna and I are going to do now!! I was invisible enough already at my practice and now, presumably, there will be no-one looking out for me at all! I've rarely even met any of the other doctors!! I just feel so numb about it all. Neither I nor Anna have the emotional or physical energy to deal with this - there's enough to cope with already!

There isn't really any good surgeries in this run down inner city area, so it's not even like things would necessarily get any better if we picked up and moved to one of the other practices - and it's kind of like playing Russian Roulette because you really have no idea what the doctors are actually like until you switch to their practice. (It's not like in America where you can really pick and choose your doctors, and go to meet them before you transfer to their surgery, etc.) It's not such a problem in the wealthier areas of the country, but it can be a serious issue in the poorer areas because the NHS doesn't dole out the money fairly across the country, and because many of the good GP's refuse to work in the run down areas of the country.

I really feel like I just faded a little bit more ... like I was hidden in deeper shadow from the outside world, and I have no idea how to become visible again. :(

'A Fading Girl' by Sarah Allegra, Used With Permission.

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 Universe Just Keeps on Giving! :P

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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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Choosing Happiness!

Ok so I couldn't for the life of me sleep today, my body was protesting too much... So I started counting up in my mind all the beautiful things in life that bring with them happiness, and it sort of turned into this.....



Frosted white windows and snowballs in winter
Freckles on noses all scrunched up in giggles
Wellington boots crunching crisp leaves of gold
These are a few of my favourite things

Dewdrops in meadows, magnificent forests
Friends who are soul mates, and carpets of bluebells
Brown paper packages tied up with string
These are a few of my favourite things.




Soft scents of jasmine and lilacs and roses
Great sprawling oak trees & tiny pink daisies
Freshly mown grass and the babbling of brooks
These are a few of my favourite things

Black and white photos and gorgeous high heels
Mountains and rivers and bees gently busy
Rainbows on waterfalls, shell covered beach
These are a few of my favourite things

Ice cream with pretzels, and faithful white westies
Snowflakes that stay on my nose and eyelashes
Silver white winters that melt into springs
These are a few of my favourite things

When the pain bites
Prejudice strikes
When I'm lonely or sad
I simply remember my favourite things,
And then I don't feel so bad!

We each have the power to choose how to view our lives, what to place the most importance on, whether we want to be happy or not.

It's more of a fight for some of us than others, perhaps, to choose happiness for our lives - but no matter how hard, it has more importance than almost anything we could do for ourselves and for those around us. I wonder how much better life could be for each of us if we chose to focus on the good (however small those things may be, especially for those of us living within four walls!) rather than the bad. How much better this world could be if more people could only learn to live that way.

Happiness doesn't always just happen. Sometimes we have to actively choose it, fight for it ... choose to see the beauty around us, and keep choosing it every single day, no matter how hard it sometimes gets!

"Dwell in Possibility..." Emily Dickinson

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! :)

Choosing Happiness!

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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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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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The Lives We Have Lost - Reader Participation Post

One of my readers (Brent - @ArgyrosfeniX on Twitter) suggested a while back now, that I write a post asking readers about what careers they have lost or are struggling to keep up with due to their illness or disability. I thought this was a great idea, and have been intending to use it since. :)

So many of us have lost so much due to sickness and disability - and those losses are hard, and have a major impact not just on our day to day lives, but on our futures, our finances, our family relationships, our self esteem ... I could go on! I think it's certainly something that's very important for us to talk about, because it can be a real grieving process to lose a job or career - or an education that we have invested our time and energy into for many years. There are many other losses associated with illness, many of which are just as devastating!

So, my questions for everyone reading here today are :

What were you doing before you became sick/disabled? What did you lose when you became sick? and How has your life and your future changed as a result of these losses?

Before my M.E. became severe, I was working as a Neonatal Intensive Care Nurse, looking after premature and sick babies on the regional NICU unit. It was a really amazing job, and an opportunity to do something that really mattered! I quite honestly really loved that job!! Nurses in this country don't exactly get paid an amazing salary, but it was good enough to live comfortably - and as I worked my way up, would have become pretty good.

It was 8 years ago now that my ME relapsed, and I became housebound and eventually had to give up my job. That's 8 years of experience in one of the best UK NICU units, lost. A career in shatters. Had I kept working there, I could have been a sister by now.

Instead, I'm living on disability benefits, and have lost my house because I wasn't bringing in enough money to cover the mortgage (and the extortionate Liverpool council tax fees!) despite living fairly humbly. My credit was damaged because of a graduate loan I took out when I was still working, and was subsequently unable to cover the payments after I quit my job. Even were I to get better tomorrow, (and regain my lost memories and neurological functions that allowed me to actually safely do the job!) the chances of me ever working as a nurse again are small - I would likely have to re-train in some way, possibly even have to go back to uni, because the medical world moves on so quickly - which I couldn't afford after all these years of living just above the bread line.

My self esteem has quite frankly taken quite a battering over the years. I suppose a lot of my identity was wrapped up in being a nurse. I felt like I mattered and was making a difference in people's lives... now I barely see anyone to make a difference!! I've had to learn to see myself through different filters, to not see my value in what I can do, but in who I am. I'm not there yet, but I'm certainly better than I was even a year ago.

Another important loss for me, which I see almost equally to my career, is that I all but lost my support system. When I relapsed, I was just coming out of an abusive marriage, and was trying to deal with all that had gone on during my years of marriage. In one foul swoop I lost the ability to go to therapy, to spend time on my online support group. I have lost both time and depth of relationship with most of my family members, and completely lost my real life friends ... only one of them has stuck with me through my illness, and she (incredibly!) became my carer and has been with me through it all! No-one else could cope with the limitations my illness placed on me, and my friends basically dropped like flies over the first year I was housebound. Since my relapse, I've very much had to go it alone, with my journal to vent to. I think I'm in a fairly good place now, but I can't say it hasn't been hard to be so alone with so much pain to deal with.

However I think the single biggest thing I have lost is the years when I could have been creating a family. I have Polycystic Ovarian Syndrome, which causes fertility issues. It would have been next to impossible for me to get pregnant 8 years ago, and would almost certainly have required IVF. Now ... well, it's never going to happen, and that's something I just have to deal with. I still want to have kids ... I've always wanted to adopt or foster anyway. But with ME, the likelihood of me becoming well enough to have kids and actually be able to raise them (without them ending up as carers for me!!) gets less every year I spend this severely ill, so there's a chance that I may never have children. And of course, the older I get, the harder it becomes to meet someone to spend my life with, too, and that's even without worrying about the fact that I have no opportunities to meet someone anyway, as I don't leave my bed, never mind my house! Quite frankly, I wouldn't willingly inflict my life or limitations on someone else anyway!

Lastly, and simply, I lost my health. The single biggest resource a person has! You can't overestimate just how much that means!!

Don't get me wrong. I don't allow myself to live in regret, or to dwell constantly on these losses. But I believe talking about it both helps us to cope with the loss, and to grieve for it. Maybe even more importantly, I hope that it will also help people outside our situations to better understand what those of us with chronic illnesses actually go through - what it really means to live this kind of life, day in, day out. That's certainly a very current issue, considering the magnitude of media slamming sick and disabled people, and painting us as weak, lazy, and selfish people who place a burden on society without ever giving anything back. Worse, they see us as liars, out to bleed the welfare state dry without any substantial or even real illness or disability! Society's perception and understanding really need to change, and the only way that can happen is for them to see the truth of our lives. And so I write my truth, and hope that people can truly hear it. :)

"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 would really love it if you guys would share your stories, your previous lives, your losses and your hopes, with me here - with each other. Comment away! :)

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 Lives We Have Lost - Reader Participation Post

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An Ocean of Grief

I've had a few really difficult weeks in terms of increased symptoms, after over-extending myself in various ways, and have had no choice but to not be online much, & to rest as much as I can stand it. I haven't had any spare energy to give, so I've had to just stop, and deal with the emotional fallout of that - which has been quite extreme given the amount I am repressing already on any given day. I have so much grief and hurt hiding inside me - and the main way I keep it shoved down deep inside is by keeping my mind busy.

So unfortunately, the side effect, for me, of slowing down is that I have more time to think not to mention feel. There's nothing to fill the silence inside my mind. When I'm able to stay a little busier - be online, connect with people, write on my blog, do small jobs on the forum I work on, read books ... it gives me less time to really feel what I'm going through. Less time to focus on how difficult, uncertain, scary and intense it is to be so ill, dependant, and isolated. Less time to remember all the things I've lost, and the things I may never have... To feel guilty about the burden I place on everyone around me... And most of all to remember that with each passing year I am missing the chance of finding a special someone to share my life with, who will love me as me, and with whom I can bear a child. At 35, with an pre-existing infertility issue, the chances of me ever having a child of my own are probably now completely lost. When I can't keep my mind busy, those long hidden things tend to come flooding back in .... So needless to say, I'm really struggling right now.

Sometimes I think my life is rather like I'm constantly swimming in this huge ocean of emotion ... and on a good day, when I can stay busy, I manage to swim, and so stay afloat - but bad days feel like I've been pulled under by a rip tide, and bashed my head on a rock. I'm stunned, and these waves just keep hitting me & I'm powerless to do anything about it. Unable to keep my head above water. I know it's really bad when I don't even feel anger anymore, just a deep, dark sense of despair, fear, fatigue & hopelessness.


There's been so much grief in my life, and often that's all I can see ahead of me, too. I don't see that as depression, or even a sign that I'm giving up hope ... it's just that the reality of my situation is that there's not even a little bit of certainty in my life or my future - and there's an overwhelming likelihood that this state of loss and grief will continue indefinitely, until I've missed every major milestone in a 'normal' person's life, and lost most of the good things that I did have.

I don't plan on giving up the fight, but I feel that every year that goes by with me still so severely ill is another battle lost ... and takes me another step closer to losing the war. And maybe that's another reason for the strength of my feeling right now - it's my 35th birthday next month - another year gone by without me being able to leave my bed and live my life.

I try so hard to hang onto the good things, and not to give up hope - but it's the hardest battle I can imagine! Honestly, this life I'm living could barely be called a life, and it's really, really hard to keep fighting when everything seems to be against me, and when I'm just so darn tired of it all. I don't even have to simply fight my body, my illness ... I also have to fight just to be recognised as genuinely ill. To get the medical treatment I need. The acceptance, support and love I need. Nothing comes easily when you have M.E. I'm sicker & more disabled than the majority of people with (for example) MS, Cancer, Aids ... yet am treated like there's nothing really wrong with me physically. I just can't begin to describe how completely soul destroying that can be.

I am so alone medically - half of my symptoms haven't even been officially documented, never mind tested & diagnosed. I sometimes think ME is loneliness. I may as well be in a country with no medical care, because I receive barely any support or treatment. This situation doesn't exactly render my default setting 'hopeful', rather, that's something I have to fight for. Have to earn.


My conclusion? Hope is a choice not a feeling!!


My life ... I suppose all of our lives, are a complex twist of pain, joy, hope & grief all muddled into one. Some of us have more pain and loss than others - but the principle remains the same however much we hurt - we have to choose whether to go on and live through it, try to forge out some semblance of happiness - or give up and fall into our pain and stop seeing the joy. For most people, there's probably a close to even balance of good and bad. Sometimes, for some of us, our lives overbalance into the negatives and we then have to work even harder to see the positives - and to find enough of a reason to go on.

Some days I'm really struggling to find that reason. Much of the reason I do keep fighting is for the people I love - because I don't want to hurt them by giving up - but that isn't enough to make me happy, only enough to help me survive. I feel like I'm living in a state of emotional darkness. That's not to say that the light doesn't occasionally manage to flicker through. There are moments of love, of beauty, of memory - but those moments are all shadowed to some extent. I honestly can't remember the last time I felt pure, unfiltered happiness - and that in itself is a massive point of grief.


I feel like I should try to end this post on a positive note ... but honestly, I just don't think I have it in me right now. Life is tough sometimes, and this is one of those times.

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 Ocean of Grief

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Six Products I couldn't live without!

Hi!

I wanted to share with you guys the six products that have helped me cope with being ill, in pain, and bedbound the most recently - those which have made enough of a difference to my life that I would highly recommend them to other people in similar circumstances. It can be hard to find things that are actually worth the money you pay ... and there are SO many gimmicky products that tell you they'll somehow revolutionise your life, when all they really do is make you poorer. ;)


The Marpac SleepMate White Noise Machine

Bit of a bigger review here simply because I posted one on Amazon a while back so I can just copy/paste to save effort.

Oh my gosh, this is one of the best things I've ever owned!!! Some of my biggest problems right now are noise intolerance and insomnia. For years I've slept with a large fan on in the summer, and the white noise it makes lulls me to sleep, and it shuts out so much household noise that it helps me stay asleep. It also makes me more relaxed while I'm awake, and lessens the 'jump' effect when there's a sudden noise in the house. Of course in the winter the large fan isn't always an option, and I always struggle more with my sleep. (and miss it when I'm awake too!) This year my noise intolerance has been particularly bad, and so I started to search for an alternative to my fan.

After some research, I decided to try a white noise machine, and I got one this Christmas, part gift from my parents, part gift to myself. I had read that the machine sometimes takes a week or so to get used to, and also to find the settings that work best for each individual, and that was the case for me even though I'm so used to constant white noise. (There is quite a lot of difference in tone and volume on the different settings available.) I tried out different tones during waking hours for the first week, while I adjusted to it, but it soon faded into the background and I started using it at night after about 5 days.

It's a very simple design and I would imagine it could keep running for a long time without any problems, though of course I can't give you a personal account of that. No, it's not fancy - but to me that's a plus because to use internal fans rather than a recorded sound (which is what lots of other noise machines are) means that there is no 'loop' in the noise - it's a very even, consistent noise, much more so than an actual fan, actually.

I've had the unit on almost constantly for 3 and a half months now, and I absolutely love it! I'm honestly not sure I could live without one now!! It actually blocks out more noise than my large fan ever did. I don't find it irritating at all, which I have to admit I was initially concerned about.

I'd recommend this machine to anyone struggling with their sleep or with needing a quiet environment, and most definitely for anyone with any kind of noise intolerance! Honestly, I couldn't rate it higher than I do!!


Perskindol Active Gel

A fellow ME blogger, Living Life from a Bed, recommended this product to me, and I'm SO glad she did! I've used 4head for migraines for years - a cooling menthol based stick that you rub on your forehead which instantly cools the area and essentially blocks the pain receptors - but it hadn't really ever occurred to me to find a similar product for pain elsewhere in my body. Perskindol is pretty much exactly that. It's a gel containing various essential oils including menthol and wintergreen (it smells basically like root beer, lol)

I've pretty much instantly taken to this gel. It smells quite strong but not offensive like some of the products on the market like Deep Heat etc. (which are so strong they stink your room out for days, plus make your skin feel like it's burning - they're the reason I hadn't tried any of these sorts of products for my ME pain) Once you've applied the gel, it can take a few minutes to really kick in, but then the area gets cold and the pain is reduced. I've found it's particularly affective for my RSI and for my feet which have quite a bit of very painful oedema right now. I hate that it's going to cost me that bit of money each month, but I'm afraid it's just become an essential!!


The Book Seat

This product is so simple it's genius! I literally couldn't read books without it, because it's too painful, and my hands are too weak, to hold a book open. (Though I've only been able to cope with audiobooks recently because of neuro issues, I ultimately by far prefer reading the book myself and this is the only way I'm able to do so now.) It's perfect for using on a bed, too, because you can position it on any angle. It needs little explanation, really. Your book (it holds even a large hardback book) sits on it, the pages are propped open by a transparent plastic bar at the front of the 'seat' and it's full of polystyrene beads so it can be moulded into the perfect position. I LOVE my book seat! ;)

Wheat Bags
As they sound, these are bags filled with wheat, which can be heated in the microwave (or cooled in the freezer) and applied to areas of pain. They're much better than hot water bottles, both because they're much more convenient, and because they mould to your body. You can buy them in heaps of places nowadays - just search them on google. :) They come in all shapes and sizes, to best fit different areas of your body.


Cushtie Pillows

These are absolutely my most necessary pillows - I've had several of them on my bed for years now, and they're just outstanding for my needs. I have an astounding number of pillows on my bed. Body pillows supporting me right down my body, pillows for my head, pillows for my legs, and pillows supporting my arms. And without them I'm basically a gibbering wreck of pain.

Cushties are small pillows filled with tiny polystyrene beads, with a stretchy soft cover which allows them to be moulded to your body in a way that no other pillow can be. They have the perfect amount of beads in them, unlike every other similar pillow I've ever tried, which were all over-stuffed and so nowhere near as comfortable. They're so soft and just, well, perfect!! I use them to support my neck/head, and my arms, and often mould one into my back, too. I'm really touch-sensitive and have just found cushties to be the best, most gentle support for my body! I just counted and I'm a little embarrassed to say that I have 8 of them currently on my bed. Oops. :D


Magicool Spray

If you struggle with getting hot flushes, night sweats, or really, really overheated, magicool might just help you! It's a cooling spray, described by the company as 'your personal air conditioner in a can'. Again, this is something which the first time I tried it, I was convinced it could only be just a gimmick - but was quickly convinced otherwise! It doesn't need much explanation. You spray it either on your skin or in the air around you, and it provides an instant cooling affect which lasts quite some time. I have no idea how it works, I just know that it does. ;)

You can get a fragrance free version, so it's probably safe for the majority of ME/CFS patients, unless you have MCS or something similar.


I hope these recommendations might help you guys - I'd love to hear from you if you try any of these items, or already have, and what you think of them! :)

What other products have you found which help you deal with your illness and pain?

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! :)

Six Products I couldn't live without!

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Dental Emergencies! What do you do when you're bedbound???

I've been thinking a lot recently about how there are so many disadvantages to being confined to your bed with M.E. that healthy people would never even consider!

Right now, I have a bad toothache. One of my wisdom teeth broke badly, months ago. Now, if I was one of my healthy friends or family ... actually, even semi-healthy, I could just zip down to my dentists, and get it pulled tomorrow! No problems.

Not for me. For the last few months I've survived on a couple of visits from the domiciliary dental service, who have put in temporary fillings - there's little else they can do. The last one fell out right before Christmas ... and I've been so ill since then that I haven't even been able to deal with a quick home visit from the dentist. So, predictably, the tooth was eventually going to start causing some major pain. And it looks like now's the time it's going to start playing up.

What to do??? Obviously I'll have to get the dentist service to come see me ... but I KNOW this tooth needs more than just a temporary filling. In fact, I'm not sure if it's not broken so badly now that that might not even work temporarily. But, I have to try at least. It will make my symptoms flare up to have to deal with a) having people visit me here, and b) messing my sleep patterns around, because my body clock is reversed and I sleep in the day. But it's either that or this toothache is going to get worse and worse. Especially with it being a wisdom tooth.

If they can't do a filling, or if it doesn't work, I honestly don't know what I'm going to do. I won't, I suppose, have a choice but to find a way to drag myself to the surgery, deal with sitting upright, in a busy, noisy, bright, overwhelming, germ filled waiting room, (it's a dr's surgery too) in order to get it pulled. God only knows how I'd cope with that ... or what kind of relapse it might cause afterwards, not just from leaving the bed/house but also from the trauma of the treatment itself (especially as I have bad problems with my TMJ joint (my jaw) which makes dental treatment really painful)! I still haven't recovered from ONE family day at Christmas, 2 months ago, and I didn't even leave my bed for that.

So yea, there are so many things that healthy people wouldn't have to give a second thought to, that are major missions for people like me - especially with the post-exertional issues that come with M.E. - this just being one example! I wish more people understood what life is like for us.

Anyone have any experience with situations like this, or ideas on the best way to deal with it? Has anyone ever had a dental surgery 'rush' you through the people waiting so you don't have to sit in a waiting room for ages, or give you a room to rest while you wait, or something??

Twitter Responses From Pantoeffelchen, who send over a really good idea for if my surgery isn't able to rush me through waiting, I could perhaps lie in the backseat of a car and have them come get me when they're ready for me. Definitely could help at least, especially if I brought my body pillow etc in the car.

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! :)

Dental Emergencies! What do you do when you're bedbound???

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Welcome to my life!

Note, April 2011 This was the first blog I ever wrote here. It was rather clumsy and didn't really say everything I wanted to say, so I re-wrote it and put it up as a page on my blog instead, once I'd had some time to get used to things! You can see the revised version by clicking on the 'My ME Story' tab at the top of my blog. :) I'm taking comments here for the page, because comments are turned off on the pages themselves. Thanks for reading! I appreciate every single one of you! Susannah

Hi! Welcome to my sparkly new, admittedly slightly strangly named blog. :) (see sidebar for a brief explanation)

I've been putting off posting for days now. Partly because my brain fog's been so bad, but in truth, mostly because I've been terrified of posting. Blogging is scary, lol! I feel like I have a lot in my heart that I want to say ... but whether or not it will be interesting to anyone else, only time will tell!

So, I thought I'd start by just introducing myself, and telling you a bit about me.


15 years ago I was a relatively happy nursing student, working night and day to qualify. I had friends, a life, and a purpose. I was, arguably, a workaholic - definitely type A personality, lol. I was working 5 day a week shifts, running a Sunday School at my local church, involved in lots of other projects, plus of course doing my uni work. I didn't have a spare minute to myself most days.

I was at work one day, on an Ear, Nose & Throat ward in the children's hospital, when I very suddenly started feeling very, very ill. I was trying to just finish my shift so I could find my way home on the bus and collapse in bed, thinking that I must have a chest infection or something coming on. (Those are regular occurrences in my life due to having the wonderful combination of asthma, & a crappy immune system) I remember I felt so extremely exhausted that I could hardly hold my head up. I was bending over my paperwork at the nurses desk when a nurse standing behind me uttered a startled cry and started looking all worried. Turns out I had a gland literally the size of a golf ball on the side of my neck. Lovely.

I somehow managed to get home, and spent the next several months barely leaving the bed or sofa, and just about avoiding being hospitalised, with my housemates looking after me as well as they could around their own busy lives ... slowly getting more and more behind on my university course. It was glandular fever. And believe it or not, this was the second time I'd been hit by it in my life - first having had it when I was in my mid teens, directly after a bout of chicken pox. Again, I had had chicken pox before, as a baby. Now, you're not meant to be able to get glandular fever OR chicken pox more than once in your life. Wasn't I lucky!?!

Even when I wanted to push through my symptoms and go back to work, I couldn't, because being a nurse, I couldn't return to the wards until the glandular fever had run it's course. Still, I told myself, eventually it would be gone, and I could catch up at uni, and get on with my life. It could be worse.

And eventually, my blood test came back clear, and I immediately pushed myself back into my busy uni schedule again - this time working even harder, to catch up on all the work I'd missed. To be honest, it was an awful time. I'd force myself through my lectures, with a LOT of caffeine ... then in every break, small or long, I'd literally lie down in a corner of the common room, near my friends, and fall asleep! Looking back, it was just insane to have gone back to uni in that kind of state ... but I had no idea then that doing so could trigger a permanent condition. (I'd spent my whole life, pretty much, working hard despite numerous and consistent illnesses - this wasn't any different, right?) Well, despite the struggle, I DID manage to graduate, albeit several months after the rest of my class.


Fast forward through the next few years of working as a Neonatal nurse in a highly intense ICU environment; (at first full time, then dropping to part time as my health began to deterioate and I was unable to keep up the pace), getting diagnosed with post viral syndrome, then M.E., getting married - to a man I loved very much but who turned out to be abusive both emotionally and physically (but that's another story!); & finally leaving said man ... and I was living in a rented house with a good friend - feeling like I was finally free, and could live my life the way I wanted again ... when I was suddenly struck with a really serious kidney infection, which landed me in hospital for a week.


And that's when my life fell apart all over again.


The infection finally cleared up, but between that and the stress of leaving my husband, (within a judgemental church environment) my M.E. went into a major relapse. This was, I think, somewhere between 6-7 years ago, and I haven't been capable of working a day since. (Dates are fuzzy for me because my memory problems are so extreme!!)

Since that initial relapse, I've bounced between being housebound & bedbound, being cared for by the most amazing best friend you could ever hope for, and I've had to learn that there are some things in life that you can't just push through. (No matter how much your doctors and the benefits system might like you to, lol!!) At this time, I've been completely bedbound for a year, & my pain and fatigue are so far showing no signs of letting up, not to mention a massive & rather scary list of a zillion other symptoms - most of which go completely unchecked by a doctor, since I live in the inner city and our doctors surgerys have little money or resources, and home visits are almost an impossibility. (i've had a home visit a grand total of once in the entire time I've been housebound!) My condition waxes and wanes a lot, but in the last 6 years I don't remember a single day when it's been a simple task to just leave my bed and get to a bathroom, or make a cup of tea, or well - anything at all, really! Every piece of energy I use has to be paid back in increased symptoms at some point later - like my body is demanding taxes. And all this while the world goes on around me, my friends and family moving on with their lives, building families and careers ... and me feeling stuck in one place, with an illness that isn't understood, or even believed in by many medical practitioners, never mind by the public in general. I've had to find ways to hold onto hope during some very dark times. I suppose it's become kind of a mantra to always try to find, and hang onto, the good and beautiful and hopeful things in life.

And so, I'm writing to you from my bed, just thankful that I'm able to do so - for now, anyway! I hope that this blog will be a positive place to be, and that it will reach even just one person who thinks that M.E. isn't a 'real' illness, and change their mind about it.

Thanks for listening!
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! :)

Welcome to my life!

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