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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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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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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Adjusting The Sails

( Updated and Extended, on August 14th )

I'm lying here feeling .... welll, honestly, I don't even know what I'm feeling.

I'm fairly sure that this post is going to be somewhat of  a rant ... a gush of feelings that have been brewing inside me for so long, I feel like I'm going to go mad if I don't get them out. I just have to write!!!

Sometimes it's really difficult to figure out what it is that I'm feeling!!! Everything gets so overwhelming, and it makes it hard to process things, and to pick out & identify individual emotions.

 My whole body is pulsing with twitches, spasms, buzzing & a sort of pulsing - and I've spent most of the last few hours barely able to move. Barely able to even think, through the pulsing.

I feel that I'm a really gloomy person when I feel, and especially when I post, like this. I'm very aware that I need to find the peace and the joy that comes with finding something to hope on once again... but its alluding me right now. I'm not depressed I don't think - not any more than anyone dealing with my kind of life and situation wuld be. But I am really overwhelmed right now - there's just too much happening all at once. New scary symptoms, flare ups, stuff going wrong at home, the issues (ongoing) with my doctor, who still hasn't delivered on promises ... and now various appointments to sort out and to somehow find a way to get through without ending up in a full blown relapse. On top of that we found a lump on my beautiful dog Jessa, yesterday, so she has to go to the vets (without me!!) today. :( I can't even do that, and it makes me feel so useless!!! To be honest, (big tough me is about to admit that ...) I'm scared, and I feel small and once again,  on a running theme, invisible. Nothing seems to be going right, or easily. (Gosh I have so much to tell you guys and I don't even know where to start! I can't do it now anyway. I'm surprised i've been able to keep writing for this long!)

I'm feeling so frustrated with myself, too. So utterly useless. I can't manage to do any of the million and one things that need doing... and unless you've been there, no-one can know just how hard that actually is. Lying in bed all day is not all it's cracked up to be!! I really, really hate watching Anna (my carer) struggle to do things for me, and I can't even help. I feel like a waste of space too much of the time.

You know what I hate about M.E.?? I hate that you can never fully adjust to it.
You can never get used to it, because suddenly, bam!!!! something else, some new symptom, changed intensity, or new disability hits you full in the face, and you have to statrt adjusting and coping all over again. 

Blowing Away by Jon McGovern

On top of all that, yesterday I had a full on, in my face, flashback of my ex husband attacking me. (I'm a survivor of domestic abuse, for those of you new to this blog) Just what I needed to get through the day, huh? Honestly, I thought I'd pretty much got over what he'd done to me, and all the fallout from the years of abuse, and other people's reactions to it - but this flashback was pretty intense and afterwards I felt broken. Heartbroken. That was the man I had loved, but he used me and he hurt me. So on top of being overwhelmed, scared, and everything else - now added to the mix is a grief so massive that I feel like I'm breaking into tiny pieces and being flung to the wind. All over again!

Recently it seems like I keep putting my hope in things, trying to find someone or something that can help ... but my hope gets hit every time and then the only things to do are either give in to depression and panic, (which I'm simply not willing to do!) or find something new to hope into. But I know I'm strong enough to get through all this - and whatever else life throws at me. I have up until now! Afterall, I have Anna, my best friend in the whole world, fighting my corner and caring for me instead of going off to live her own dreams. I have some amazing online friends, who have got me through so much over the years! I have my dogs. And a family who loves me even though they don't really understand and can't really deal with it all. And I have the online ME community, which is also making such a difference in my life. Perhaps those things are the only hope I need right now, they're sure strong enough positive's .... afterall, there are so many people out there going through so much more than this. And well, because of the people 'around me', at least I'm now standing up (well, not literally, HA ... ooh, the irony of that statement!) and trying to get the help I so desperately need, and deserve!!!!!!


◦ - - ღ - - - Because I do deserve it. We all do!!!!! - - - ღ - - ◦

And on that note, albeit it something I know in my head but not yet my heart, I'll end this post!

Note : Sorry about all the mess of this post. I'll try to edit out all the typo's etc, tidy it up, maybe add pics, and tag it etc, tomorrow .... somehow i just needed to get this out... though i feel i've done a very poor and very short job of expressing myself.

I think I just needed to speak, to vent as many of the things that are
splintering me, crack by slow crack, as possible .....
for my feelings to not be so invisible as I myself have begun to feel!!

Update : 14th August

Thank God, Jessa is ok! The vet found quite a lot of lumps actually - but they are, as I was hoping, just fatty lumps, which she's had a couple of times before. He doesn't even want to bother removing them right now, and won't, unless they get bigger or start to bother her in some way. So that was a huge relief for us!! :) :) :)

We had my other dog, Kiya, checked out at the same time, and ironically, the story there was more worrying. A while ago, a different vet at the practice found a lump on her liver. Kiya's starting to get old now, and has a lot of really severe skin and immune problems, so we decided (on the info the vet gave us) not to bother doing anything to get it further checked out, because I wouldn't want to put her through any intense treatments as she is going through enough already. However, the vet we saw this week (One of the practice owners) checked the lump for us, and he thinks that it's on her spleen, not her liver. He can't be sure till we get a scan, which we're doing next week - but if it is on her spleen, it would be a fairly simple operation to remove her spleen. A completely different scenario to it being on her liver!!!!

Jessa, on a walk with me & Anna, on a rare holiday to Scotland in 2009

Kiya, curled up behind my knee - she loves to be close to us! In 2010

I'm pretty mad with the vet we saw initially, as this issue could have been sorted months ago ... but then at the same time, I'm so glad that he was probably wrong, because this means that Kiya's life will probably be much longer than I was thinking! Guess we'll have more information after she's had her scan next week. It means a general anaesthetic, (which is always very stressful and worrying for me, because of the risks) but hopefully it'll be worth it - and my dogs usually come out looking less harried than I do, rofl!


I've finally got to adding pictures to this post, and getting rid of all the typo's (sheesh there were a lot!!) - I had hoped to do it the day after I wrote this post, but I've been really struggling to get online, and my cognitive functions have been pretty poor, so that just wasn't gonna happen. Ah well, got there in the end!! :)

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! :)

Adjusting The Sails

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Letter to my GP

Following the last 7 weeks of inaction from my GP (Read my post 'Am I Invisible???' to hear the story so far) I've emailed the below letter to her today, in a final attempt to get a response before I resort to contacting PALS, the Patient Advice & Liaison Service. I'm really hoping that my GP will realise just how long it's been since we last spoke, and will contact me. If she doesn't, I simply don't have the spare energy to keep pushing at her to do so ... and as I don't want to actually put a complaint in, (I'm concerned that that would only make the situation worse, plus she's a nice woman and I don't want to make her life any harder than it likely already is, working in a surgery with such low resources!), contacting the Advice & Liaison service seems like the logical next step.

I've never before, in 15 years of ME, gone this far in trying to get my doctor to help me. It feels very unnatural for me (my default setting is just to back off and not bother even asking for help, trying to manage it all alone) and I feel like I'm just a nagging child demanding attention. But I know in my mind at least that these are issues that I can't just ignore, this time - so I'm putting myself out there and hoping with everything in me that this situation finds some resolution, and that she will understand where I'm coming from and not just find me irritating.

I just wish I didn't have to push so hard to get basic needs met! It feels like a very vulnerable place to be, to be honest - like I'm putting myself into the bad guy position. It's certainly stress I can do without.

I'm crossing all my fingers and all my toes, hoping that this works!!!

Dear Dr X

I need to ask you, seriously, whether there is some reason that you haven't contacted me since our last phone call? It is now 7 weeks since you told me on the phone that you would calculate the amount of vitamin d I need to be on, and then contact me the following day ... only you never did. My phonecalls to the surgery and now emails (which took me a lot of energy to write) have gone unanswered and I'm at a complete loss as to what to do. 

I still can't get my appointment to see the gynaecologist, as I don't have the referrals paperwork from you (I need the reference number and a password, I believe, which could just be emailed if that's easier than posting the forms out!) and there are other outstanding issues that I need to discuss with you - all detailed in my first email, which I sent over 3 weeks ago now.

You told me that these things going on right now (cardiac, gynae, & vitamin d deficiency) were all urgent issues which needed to be dealt with straight away, yet they've all been put on hold for 7 weeks. I know from working in the NHS myself that this would never happen with a cancer patient (for example). It's not right that anyone, no matter what their condition, should be in  this situation where they cannot get help for serious issues. 

Please would you email me as soon as possible? I need to know where I stand, and more importantly, I need the vitamin d (and any other supplements I need additionally such as magnesium (to make the vit d absorb better) or calcium) to be prescribed so that I can begin to repair the damage that 8 years of being housebound has done to my body. 

I cannot send someone to the surgery to get my gynae paperwork or to discuss these problems with getting responses from you. Anna isn't able to get out and about very much and my mum's myeloma has just relapsed so her and my dad have enough to worry about without me asking them to call in at the surgery. 

We all found it rather ironic a few weeks ago when my mum had no problems getting a home visit by her GP (we live in the same house, but go to a different surgery) because she was in a lot of pain ... but she is nowhere near as disabled as I am. I'm willing to understand how busy you are and I know this isn't a simple situation because you are very overworked with few resources. But I'm not able to wait any longer, or to continue spending my energy on a fruitless search for help. I need a doctor who will listen, as you have ... but also one who will follow through on their promises and whose word I can trust. 

Kind Regards,

Susannah

Reader Question Over the last few weeks I've heard from so many  of you who have been going through very similar  things with your own doctors. I'd love to hear from  you if you've found any solutions to these problems   and what those solutions were!!   ㋡

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! :)

Letter to my GP

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Am I Invisible???

What are you meant to do when you're bedbound and your doctor is ignoring your attempts to contact her?

6 weeks ago, my doctor called me with the results of some blood tests, and about some serious cardiac & gynaecology symptoms I've been having. It had been pretty hard to get in touch with her at the time. My surgery refuses to do home visits for anyone unless they're cancer patients, because they don't have the resources. It's a common phenomenon in some poor inner city areas in the UK especially for people with illnesses like myalgic encephalomyelitis ... but it makes life pretty difficult when you can't leave your house to go to the surgery, and even phonecalls with the doctor are difficult to get about M.E. related issues. Eventually I managed to get a phone consultation with her about a minor infection, (how ironic is that when I have so many more serious things happening??!!??) and I took the opportunity to bring her up to date with more of what was happening with my health, which had led to the blood tests, and her phonecall with the results.

She was apparently very concerned at my vitamin d levels. I'm severely deficient (< 5!) - which is bad as it's probably been going on for years (I've been housebound for 8 years now) and my bones are likely in a serious mess as long term vitamin d deficiency causes Osteomalacia, which is essentially adult rickets. It's also likely that the deficiency is adding to my levels of illness in other ways, such as increased fatigue, pain, and muscle weakness.

We also talked over some serious cardiac & gynae symptoms (See my last post about these issues for more details) I've been having for some time now. She said she was referring me to see the cardiologist & gynaecologist specialists. She said that she would get the paperwork out to me, which I need in order to actually book the appointments - you don't even go on the waiting list until you phone the appointments office with the referral details. She said she was also going to try to get me booked in for 24hour cardiac monitoring before my cardiology appointment so that I'd have that information to take with me.

Additionally, she said she wants to refer me to specialists for bone scans etc because of the vitamin d issue, but would wait on it till I've seen the cardiologist & gynaecologist, because they are 'urgent' referrals (her words!) and I will only be able to cope with so much at once, physically speaking - any appointments outside the house are really major for me. She said that she was going to work out the dosage of vit d i would need (Possibly will need injections) and would call me the next day.

Now, here's the rub. That was 6 weeks ago, as I said, and I've heard nothing from her since, (despite phonecalls from me and my carer to the surgery, and an email from me to her work email address) apart from an acknowledgement that she had received the email, and a promise to reply within 2 days. That was a week and a half ago now!!!

She didn't even send me out the paperwork for the referrals, (though she did put the referrals through) despite phonecalls asking the receptionists to look into it for me, meaning that that's 6 weeks these so called urgent referrals have been put off. I finally received the cardiac appointments paperwork this week - we think the practice nurse may have posted them out - so have been able to go onto waiting list for that apppintment. However, there's still no sign of the gynae paperwork so I can't even get onto the waiting list. As for vitamin d, absolutely nothing is happening, which, considering how freaking worried she was, seems pretty outrageous to me!!!


I really, really don't know what to do now! I feel like I should be very angry ... and I think I am, in some part of my mind ... but mostly I feel really really upset and am losing hope that anything can ever get better with this kind of situation. Hope that I had only just begun to gain back after so many years of being chucked around by the NHS, and losing trust in them to the point that I have rarely seen a doctor over the years I've been severely ill. I really thought that perhaps this doctor would be the one to care enough to give me the treatment any other person with any other illness would automatically get. I guess I was wrong.

Every time I think about all this, I'm tearing up (unusual for me!) and honestly, feeling quite scared to be so alone with such scary symptoms. The cardiac problem especially seems to be getting steadily worse. When I'm upright for a while, like when I have a shower (sitting in my shower chair) my feet are now going so grey/mottled/blue that it's kind of freaking me out - watching that getting worse week by week is the kind of visual aid I can really do without!!! It feels sort of claustrophobic - like I'm trapped in this crappy situation, because there's nothing I can do to make her do the things she promised to do. Nothing I can do to improve this situation. I don't have the energy to fight any harder. :(

I honestly feel that there is no way that this doctor (who's very nice, by the way) would ever treat someone with a different, more accepted illness this way, and it feels so completely unjust and unfair. But there are few options for someone like me in the area I live. It's really hard work to stop myself from falling into hopelessness! I want to be happy and I work to be happy - but this issue makes that fight much, much harder! I feel utterly invisible ... and I'm just so, so tired of having to fight for the simple right to be treated like everyone else.

photo by slurpiesandstraws ☮	via PhotoRee

..... Read the continuing story in this related post : Letter to my GP | The Thing With Feathers

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! :)

Am I Invisible???

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Bad News For Our Family : Multiple Myeloma

My family had some bad news this week. My mum (who's in her 60's) just recently was diagnosed with arthritis in her knee. Around the same time, she began having severe pain around her hips and back. The doctors were going on the supposition that there was something arthritic going on there too, and didn't seem too worried.

But my mum's situation is far from normal. Bear with me while I give you a little background info? It's rather a saga to explain at this point, as it's been going on for so long.

Around, perhaps 5 years ago (I'm bad with dates so I'm not exactly sure...), my mum had some similar pain in her back, and went to the doctors, expecting she had just pulled a muscle or something. To her surprise, he sent her straight off to a local hospital for an xray. Within just hours, she had been ambulanced over to a specialist Oncology hospital, and we were told that she had a tumour. It all happened so quickly, the family was in shock! She was given urgent radiotherapy treatment while further tests were carried out. Over the course of the next days and weeks, the doctors figured out exactly what was happening to my mum.

photo by denise carbonell	via PhotoRee

She was diagnosed with Multiple Myeloma, the tumour was 'just' a metastatic tumour, ie, it had spread from the primary cancer, the Myeloma. It's a cancer few have really heard of, never mind know very much about. It's fairly unique among cancers, because in effect, it's a chronic form of cancer. There is no cure for it - just treatments which hope to push the cancer into complete remission for months, or years. It's inevitable that the cancer will return, presuming of course that the person doesn't die from something unrelated before that happens.

Myeloma, also known as multiple myeloma, is a type of cancer arising from plasma cells which are found in the bone marrow.  Bone marrow is the ‘spongy’ material found in the bones that produces blood cells i.e. white cells, red cells and platelets Plasma cells form part of your immune system Normal plasma cells produce antibodies (also called immunoglobulins) to help fight infection. In myeloma, malignant plasma cells (myeloma cells) in the bone marrow produce large amounts of an abnormal antibody known as paraprotein. Unlike normal antibodies, paraprotein lacks the capacity to fight infection and has no useful function. There is a big risk with Myeloma of the cancer spreading to other parts of the body and creating metastatic tumours, because it's a cancer of the plasma, so the blood carries the cancerous cells all around the body. Along with these metastases, myeloma can cause damage & weakening to the bones, often causing pain, loss of mobility, and fractures. It can cause hypercalcemia, damage to the immune system, anaemia, exhaustion, & serious kidney problems. References : Medline Plus & Myeloma UK

Scary stuff, I'm sure you'll agree!

Over the next couple of years, mum had radiation treatments, several rounds of chemotherapy, and various other treatments, culminating in a stem cell transplant, using her own stem cells, harvested beforehand. She was in an isolation room for a long time, because the risk of infection after a transplant is so high. (In fact even just the illness itself makes the immune system pretty much non-functional, and not only do people with active myeloma catch things very easily, but a simple cold could actually kill them, because their body has no way to fight off the infection!) Mum spent a LOT of months in hospitals over those years. The transplant was successful, and she went into a complete remission. We all knew that it would come back some day in the not too distant future - but for right then, mum had won a victory, and we celebrated! Hope had won this battle!

photo by felibrilu	via PhotoRee

So ... hence all of our concern when mum appeared to be having similar symptoms as she did when the whole thing started last time.

Over the last few weeks, mum was admitted to hospital twice because her pain was so extreme and despite strong medications, it was totally out of control. Mum had barely slept, and honestly, it looked like she'd aged a decade in a week! Thankfully, the hospital took it very seriously, and had her on a morphine drip and several other drugs pretty quickly. I think if I'm honest with myself, I knew then that this was no arthritis, and started steeling myself for bad news. During that time, they found some lesions (holes) in her bone in the area of the pain - this is something which happens with myeloma ... your bones can end up looking like swiss cheese and can break very very easily because of it. Thing was, they didn't know for sure whether this was old damage from years ago, or whether it was new, signifying that the cancer had returned for a second battle.

So the day after her second admission, she had a full body MRI scan, to get a clearer picture of what was going on in her body. This indicated that the Myeloma had indeed returned, that the damage was new damage. She was transferred to the haematology ward, where they specialise in treating myeloma patients (we were VERY lucky to have a specialist unit in our local hospital!!!!) She had radiotherapy yesterday, but they think she may only need the one session this time, which is great because radiotherapy side effects are pretty awful, particuarly the nasty burns!! She'll still have a burn within a few days, but it shouldn't be anywhere near as bad as last time!

Unfortunately for mum, they may have to do another bone marrow biopsy soon - they're pretty horrific, involving drilling right into the hip bone with a hand drill and removing a core sample. Terribly painful. She's pretty worried about it because the one she had last time was awful - they had to do it 3 times before they got it done right!! She also has to wear a back brace whenever she's not resting in bed, for the next few months at least, to support her bones and try to ensure that she doesn't break them (which is more than just painful, it's very dangerous as it can cause damage to the spine, etc.)

We still don't know whether she's going to need chemotherapy. My gut says probably yes ... but whether that's my nurses instincts (I was a nurse in a former life), previous experience, or simply fear talking, I'm not sure. She definitely, however, is going to have to have cement injected into her weakened bones, to strengthen them - I know, sounds barbaric, doesn't it!! I'm fairly scared though becasue I know the chances of beating myeloma when it relapses are much worse odds than the first go around. I love my mum and I can't imagine life without her. So I accept the truth but am also hoping for the best!

photo by Compound Eye	via PhotoRee

So, bad news : sort of an understatement.


Thankfully, my mum's in the best place she could be right now, (well, in this area of the country anyway) and her meds have her pain controlled fairly well. Plus, this time around, she knows the drill, which I think probably takes some of the fear out of it for her.

I want to write about what I'm feeling and how I'm coping ... what it all means for us as a family ... but even getting this post together has been a bit much because I'm really ill this week. I don't know if it's the extra stress, or the attempts I've been making recently to research M.E. cardiac stuff so that I can present the cardiologist with all the right information he may need and probably isn't aware of... (when I finally actually get the freaking referral papers my GP STILL has not sent to me after weeks and weeks!! I'm so cross about that, by the way, but I've had more important things to worry about, I suppose!) ... but my pain has gotten worse and worse, I'm not sleeping well (worse than normal, that is), my neurological and cognitive symptoms are worse than they have been for quite a while, and I'm getting palpitations just sitting watching tv or reading, or even just doing nothing. I will say that I found it absolutely ironic that it's Myeloma Awareness Week next week. Strange coincidence.

Anyhow, I'm exhausted, body & mind, and my fingers are seizing up ... plus I've just probably bored you all to tears with all this medical gumph about a person you don't know ... so I'm going to leave it here for today, and try over the next few days to write about my own reactions and well, the more personal stuff that's going on. It just didn't make too much sense to me to talk about a situation without you guys really understanding what that situation was - so there you have it. I hope you managed to stay with me through all that. ;)

I also hope those who have commented on my last couple of posts and haven't yet had a response will understand why, and know that I will get to them as soon as I'm able. It means so much to me when you guys let me know you're listening. :) I don't want you to think I don't appreciate it!

(((((All of you amazing readers ... friends (!) who have given me so much hope since I began this blog!!))))))
I don't know how I'd be feeling right now if I didn't know that I had a place to go to talk about what's going on in my life, where people actually care enough to read, and to be here with me through whatever happens over the coming weeks and months.

If you're able, please consider making a small donation to the UK charity Myeloma UK, for Myeloma Awareness Week. They fund desperately needed research into the cure, cause, prevention, & improved and safer treatments for Myeloma, and work at achieving a greater understanding of Myeloma. Funds raised also enable their programmes and services to ensure no one faces myeloma alone. Even the smallest donation makes a huge difference when joined with all the other small (and big) donations! You can find details of how to donate on the Myeloma UK fundraising page.

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! :)

Bad News For Our Family : Multiple Myeloma

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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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