Fears and Potential

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

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

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

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

photo by Meredith_Farmer	via PhotoRee

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

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

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

So... The plan..?

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

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

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

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

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

"Sometimes in the darkness, while wolves howl and we feel the cold touch of fear against our spine, a faraway light glimmers Sometimes in the press and the chaos of the crowd, in the noise and the hurry, a soft voice whispers. That light, that voice, is Hope. Sometimes we feel as though trying to catch hold of it is like trying to dance with clouds or turn lead to gold, but its always there waiting to suddenly appear right in front of us. within our reach." Poem by Sarah-Louise Jordan, used with permission and much thanks! Sarah has two blogs which I highly recommend you visit. The first, 'On a Long Road, Take Small Steps' is about her long journey with Severe Myalgic Encephalomyelitis. The Second, 'Life is Uncertain, Eat Dessert First' is her poetry blog - and I have to say, she is genuinely a talented poet & writer!!

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

Fears and Potential

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The Saga (and I) Continue Wearily On

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


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


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


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


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

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

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

The Saga (and I) Continue Wearily On

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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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Hope and Happiness Within the Storm....?

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

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

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

There can be beauty even in massive destruction!

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

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

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

Hope and Happiness Within the Storm....?

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Can we Transform Pain and Despair into Beauty?

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

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

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




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

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

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

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

Can we Transform Pain and Despair into Beauty?

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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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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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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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