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!

Tweet

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?

Tweet

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

Tweet

Guilt : Trying to Find a Healthy Response

When someone you love is seriously ill, there's a relatively standard mix of difficult & painful feelings, and issues. Grief. Fear. Anger. Frustration. Sadness. Worry. Often guilt. But when you're also seriously ill yourself, it complicates things almost to the point that it's impossible to convey your feelings, (never mind deal with them!) because they're all mashed up and interwoven, and it's hard to separate out each individual strand, like fairy lights, retrieved from the loft just before Christmas!

photo by lovelypetal	via PhotoRee

When my mum was first diagnosed with Multiple Myeloma 4 years ago, I was very ill, housebound ... but it was a better stage than most of the last 8 years. Mum was in hospital for many months, on and off ... including one pretty long stretch when she had a stem cell transplant and was in isolation. At the time we hoped, of course, that she would come through it and go into remission ... but we didn't know anything for sure, and I was really scared that I would lose her. My whole family was really struggling. I'm the oldest of 3 children, (my youngest sister being a full 10 years younger than me), my parents were at the time in their mid 50's ... and I felt responsible for keeping everyone else afloat. There were so many roles (most of which were natural for me, some of which were just plain hard work) that needed to be stepped into, and which I wished to carry out. I guess I was going for the full on martyrdom, and not in a good way!! I used my stress and the affect stress has on my body, forcing my intense adrenaline rushes into overtime so that I could visit my mum every couple of days, support my family, inform and liase with my mum's friends and relatives. It's my default stance ... the carer mode. Except that, of course, I was still struggling to cope with my own illness and disability.

I had ... and have, thank God, an amazing best friend, (I'll give her an alias, I think, as I'm not sure she'd want to be identified online, and I imagine I'll probably talk about her a fair bit in the future. So ... she'll be known as Anna) who's my carer and very much a part of our family. I'm not sure I'd have survived the last 8 years had she not been here. We're each other's rocks, in many ways, and the things we've been through together have brought us really close over the years! She supported and loved me through that difficult time, and I'm more thankful for her than I can possibly express!!

photo by eflon	via PhotoRee

I knew, though, that everything I was doing would have a backlash on my health. My screwed up adrenaline kept me afloat in the short term, but around the time my mum was finally getting better, and things slowed down for us all, my body crashed in a big way, and came to a grinding halt. I've been bedbound more often than not during the years since then.

Now that my mum's illness has come back, my first instinct is to fly into that overstressed 'super-hero-aspiration' mode - but I just don't have the choice to even try it, this time around. I'm completely bedbound ... have been for about a year and a half this time. I can barely manage to make it to the bathroom ... never mind to the hospital to visit my mum.

The first time Myeloma darkened our doorstep, I'd say my primary emotions were grief and worry. (Though there were certainly many others in the mix too!) This time, guilt is overshadowing every other emotion to the point that I can barely feel anything else. I do know that it probably isn't fair to myself ... and that my mum would never want me to feel that way (just as she wouldn't have wanted me to run myself into the ground for her last time!!), but it's hard to teach yourself to react in a different way.

I feel guilty more than anything because I can't visit my mum. I talked about it with my dad last week, and he suggested, kindly, that I should just give her a phonecall every few days ... I had to admit that I can't even manage that right now. I felt ... feel ... so utterly useless and really, really embarrassed to admit that. It's hard to explain how conversation, especially over the phone, can be so completely exhausting that it's basically impossible. How can anyone possibly understand that?? I've been managing to email her short little messages several times a day ... and I think mum more or less understands why I can't do more, and that I'm trying my best. But I can't seem to stop myself feeling like a failure. I own those insecurities, though, and I'm trying to teach myself that it's ok to not be able to do everything ... that I don't have to be perfect. Not an easy lesson to learn!!

photo by i heart him	via PhotoRee

I feel guilty that I can't help out around the house, do the cleaning and laundry etc for my dad. (Anna and I moved in with my parents, and my younger sister who still lives at home, a while after my mum went into remission. With my mum and me both unable to work, neither of us having much money in savings, and struggling to pay our mortgages, we decided to merge our finances by me buying a share in their house. So, I sold my home and we moved in. We lead fairly separate lives, though it's not a large house (I have one room, as does Anna, with shared bathrooms and kitchen), partly because I'm not able to spend much time with people as it wears me out so quickly, within just minutes at best ... & partly because my body clock is reversed so we're up in the night rather than the day. In the normal run of things, Anna, my mum, and my sister share the household chores... but we eat separately and do our own laundry etc. I'm unable to do any of that work right now, and with my mum now unable too, it's a pretty big burden on Anna especially, on top of caring for me ... and being sick herself. (She has had Post Viral Fatigue Syndrome for a year now, and we're both hoping with everything in us that it will clear up soon and not turn into something more insidious - you all know what I'm talking about!!!) My dad works really hard, often into the evenings, and now of course he has to fit in a hospital visit each day too. The one thing I desperately want to be able to do is breeze through the house, cleaning as I go ... but I can't, and I have to watch my friend and my dad struggle, instead. It's beyond frustrating.

It feels really complicated, dealing with worrying about my mum's health at the same time as so much going on with my own. (My blood pressure issues seem to be getting even worse. The things the doctor promised to do have yet to materialise - though I've managed to get hold of her email address and am hoping the email I've sent will push her into action! The extra stress on top of all the normal stuff seems to be making my pain worse and is sapping my energy. My neuro issues have been getting really bad ... struggling to communicate because I keep forgetting so many words and losing track of what I'm saying half way through sentences.) And of course we're all very aware that this is a long term situation. (Mum has started a new treatment this week, which has just recently started to be used for Myeloma, called Velcade. It's shown some great results for Myeloma, so I'm really happy that she's able to receive this treatment!)

The situation is complicated even more by the fact that until my mum got ill, she was actually helping Anna with some of my care. Not huge things, but little things that build up, like feeding my dogs, taking Kiya to the vets, (Kiya, one of my westies, has a severe chronic skin problem and needs regular vet visits) and doing a bit of my laundry. In essence, I've lost a carer, which while Anna is ill also, isn't the best of situations. We don't know how things will go with my mum's treatment, of course, but we certainly can't count on mum returning to her former amount of mobility - and in any case, the likelihood is that it will be a fairly long road back to recovery.

I felt horribly guilty that my 60 odd yr old mum was caring for me anyway ... and then she got ill and I can't help but worry that her doing those extra jobs could have put extra stress on her body and put her into relapse quicker than might have happened otherwise. And now I feel guilty that I'm also worrying about myself and Anna because mum can't help us anymore. (Not to mention worried that the extra work for Anna will make her sicker too!) I do understand in my 'head' that these are reasonable concerns, but in my heart, I feel guilty, like I'm making it all about me when it should be about my mum. It's just such a horribly complicated and interwoven situation!!!

photo by missrains	via PhotoRee

I just wish things were different. I wish I could be the carer instead of the one who needs to be taken care of. I wish mum's cancer had returned at a time when I am able to do more ... or that I hadn't pushed myself so hard last time. I wish that the NHS had done more for me over the years so I hadn't ended up in this position in the first place!!!! I wish my family understood a little better what I'm going through so that I didn't have to worry that they feel like I'm letting them down. I wish I wasn't a burden on the people I love! .... But these are all things that I can't change. What I can change is my response to the situation, and to my own feelings.

I'm trying really hard to deal with this in a more positive way this time ... in a way which lets my family know that I love them and am supporting them, but without doing any more damage to myself than I can help. I'm working on not beating myself over the head with guilt ... no easy feat, but I do realise that it doesn't help anyone for me to do that, and that it wouldn't really be fair to myself either. So I'm trying instead to take care of myself too ... whether that means talking about how I'm feeling, looking after my own physical health, or simply eating cake with Anna! ;) Guilt really is a waste of effort, and I don't want to waste any more of my time on it! All the same, it's pretty difficult to stop feeling it!!

I'm really glad that I've started to be a bit more open about my health problems and how ME affects me, over the last few years, so my family do at least have a bit more understanding of my illness (my mum especially) This would be a much worse situation had I not got a bit braver!! I also feel very lucky to have got hooked into the ME community over the last year or so, because you guys are all so amazingly supportive!! I'm thankful that I have people around me that I can be honest with. I hope you all realise just what a massive difference you are making to my life! :)

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! :)

Guilt : Trying to Find a Healthy Response

Tweet

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

Tweet

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

Tweet