Welcome to our Official Blog Discussion Number 2 our Beautiful Blogger Arme!!
Most human beings, at some point in their lives will struggle with their personal view of their self worth. These people have 'regular' lives, and 'regular' problems (I use the term 'regular' as I believe 'normal' is obsolete, and can't think of how else to put it).
So what about the people who are for whatever reason, unable to do the things these
people usually do to feel worthy?
What about the people who are too ill to go visit a friend in need, or feel adequately able to congratulate families achievements, or to hold down an ordinary job. What about the people so ill, they can barely look after themselves, let alone others.
This battle is one most people with M.E. will face at some point during their illness.
Being able to see how much genuine self worth you all hold, is something we feel passionately about, and so here we are discussing it.
Personally, I have struggled with this for my whole life. Yet hold such double standards for others, who I entirely believe are just, worthy, valuable beauties, exactly as they are.
I did an interview recently with a charity that I support that is about self worth. The interview was about the what the essence of True Beauty is. There is quite a lot from it that I could repeat here. Because all of your souls, all of your deepest selves, are truly beautiful. I sincerely mean that. No matter what you look like, what your abilities are or how limited they are, no matter what you think about yourself, I think that you are most worthy. That includes all of you, no exceptions.
I hate that we live in a world where it takes courage to be you, to stay who you really are. Yet people with M.E. have so much added pressure on top.
I know you too feel strongly about this Jodi, what would you say to a 'healthy' person to explain the often uselessness we can understandably feel?
Jodi/Hbird; Thanks Tink, this is a really important topic.
Okay...I would ask that 'healthy' people try to understand a little bit when talking to someone that has had to give up work or study due to illness, that this is extremely hard to deal with. Many people would like a few more week or months off from work each year or to work far less hours, I completely get that! But not being able to work at all for years at a time, not having the choice, is not something 'healthy' people should even joke about envying, as people sometimes do. It is just devastating. Financially, socially and emotionally.
Alison/Tink; Right, especially on top of trying to deal with a devastating illness.
People have many a time said to of 'You're so lucky, I wish I could just lay in bed and watch films all day.' As you say, hearing such can feel so disheartening.
It can feel so painful not being able to reach the 'normal' milestones in life, not having a job, not getting a house, getting married and having children. So many of us, including myself, are unable to gain one of these.
When I set up this blog, before we put up any posts, I showed my dad. I wanted to show him something that in a tiny way, may make him somewhat proud.
This made him cry. Because to him, me living another day makes him proud he says. Yet to me, I have never succeeded in anything that could make anyone proud.
Self opinions are so super biased. It is amazing the different standards we hold for ourselves compared with those we hold of others.
Jodi/Hbird; So much of our self worth is in what we do. In our jobs, in our role in the home as meal-makers and as people who pull their own weight at least with household tasks, in our hobbies, and even in the way we style our hair and the clothes we choose to wear and express ourselves with...and a million other things.
Alison/Tink; Definitely. Having such little control over any level of things can feel so demeaning and plague your opinion of your self and self worth, and your life on whole.
There are so few decisions we get to make, so few choices we get to choose from. When you have so little control it is easy to feel small and insignificant.
You know when a child says their first words, adults almost immediately ask 'What do you want to be when you grow up?' I always only ever wanted to be a mother and a wife. Thanks to this incredible disease, I can't be a mother, and I almost certainly will never get to be a wife. So when you have spent so many years believing that you are here on this earth for one reason, when that is no longer possible, you wonder why you are here. You inevitably question your purpose and value.But just because things become apparent that changes your who perspective does not mean that you aren't exactly who you are supposed to be. But boy is it a mind bender., and such a battle to realise!!
The reestablishing of perspectives on a various spectrum of subjects is forced upon us in many sad and marvelous ways due to this multifaceted illness. Self worth being one of the most important., and difficult ones.
Jodi/Hbird; But when you get a disease like M.E. it not only takes away the big things like the ability to work or study, but it takes away so many of the medium and smaller things as well. It shakes not just your self worth but your very sense of self, to the core.
The first 6 months or so after I had left University due to M.E. were some of the hardest months I have ever had, and that is really saying something with how ill I was while I was studying and the 4 or 5 day blackouts each week and so on, and how ill I became right after this as my overexertion from studying too long really came back to hit me where it hurts and I entered my worst 'black years' of very severe M.E.
I had such a hard time dealing with not having a focus in my life and with feeling like I wasn't pulling my weight somehow, because I wasn't working or studying. I felt adrift and as if I was just in limbo, with nothing to aim for and to strive towards and look forward to. Work and study give such structure to our lives.
It took me many months to really understand at a deep level that I had value even if I could not do almost anything, and that what you do is not the same as who you are. So I had to learn who I really was and what I really valued, sort of from scratch, now I didn't have those easy and somewhat superficial definitions based on my work and study.
It was a really valuable experience this redefining and more deeply defining of self and one I think we all have to go through to some extent to really grow up. It was a valuable lesson to learn, but oh did it HURT getting there! I suppose all worthwhile emotional growth comes with pain, but when you are suddenly forced to do it all at once and without the distractions of work, study, or even much fun time spent with friends, it is incredibly intense and overwhelming.
For anyone going through such a battle now, I would like to send them a big cyber hug from me, but also remind them that it does pass, and you do learn to adjust your sense of self over time. Being severely ill is never fun and is always a heavy burden but you do work out ways of thinking and coping along the way, that you just have no idea about in the early stages.
It is a bit like a roller coaster, coping with your loss of self and your loss of self worth. You might have a big 'dip' then be okay again for a bit, and this pattern just keeps repeating. New issues continually have to be dealt with, but hopefully the 'dips' get smaller as you go along. Mine certainly have, although every day is still hard. Not being able to support my friends and family when they need me is really hard. Not being able to care for myself and do my own housework is hard.
Having such utter fear for my future is hard. The fact I have been too ill to travel for over 6 years now gets harder as the years go on...
Alison/Tink; Hard yet such an understandable struggle Jodi, but that doesn't make it easier to deal with tho does it!!
I think it is an important milestone to realise that people are not simply the sum of their actions. That physical abilities are not the be all and end all of intent.
Ill people can learn a lot from this quote "Everyone is trying to accomplish something big, not realizing that life is made up of little things." ? Frank A. Clark
Feeling insubstantial as a person is very understandable when you often can not even clean yourself. Yet the heart of you, and the fact that you do anything at all to remain in this world, shows such courage that makes you beyond worthy.
I heard this quote recently, and found it so pertinent to the often lonely, sadness of feeling 'less than' --"I wish I could show you when you are lonely or in the darkness, the astonishing light of your own being." -Hafiz.
Jodi/Hbird; I completely agree Tink, just keeping going each day when the level of suffering is so enormous and there is often so little support, shows an amazing level of strength and that is something to be proud of, it really is.
Alison/Tink; Absolutely.
Jodi/Hbird; I'm also so often blown away by how much kindness my fellow M.E. patients have to give to others. They can be suffering so extremely themselves, yet still have the thought to cheer someone else up with a kind comment or some helpful advice. The human spirit is amazing and human beings are so much tougher and more resilient than we are usually told they are.
Not a week goes by I am not taken aback by how amazing my fellow M.E. patients are.
That these same people are so often accused of being weak or having a huge deficiency of character (due to ignorance that 'chronic fatigue' is in fact not remotely the same thing as M.E., and that this view is common only because of the involvement of financial vested interest groups in science), boils my blood, as it is just so grossly unfair!
Alison/Tink; With you Jodi being one!
And yes, I Couldn't agree more. These very people are so often unheard. Yet are truly heroic! To be so continually judged, and to such a degree, and to then still go out of their way to support one another, often to the detriment of their already fragile health, just bowls me over!
Especially as you say when we are so often not believed to be genuinely ill.
Jodi/Hbird; Another thing I want to add is that having self worth can be really difficult when those around you do not understand that you are at least as ill as someone with MS, and they wrongly think that you are just 'fatigued' or lack motivation to do things or that you could get your life back if only you tried hard enough. Having your character and amount of moral fibre disparaged again and again can be very difficult to deal with, and when you are already so weak physically due to illness and have lost so much of what you thought defined you, it can be difficult not to start to believe such comments.
It is important to remember that nasty and belittling comments directed at the M.E. patient are almost always NOT ABOUT YOU! They are an expression of an inadequacy in the person saying them. People that are happy with their lives and that are emotionally aware and mature do not spend their time picking on very disabled ill people! They just don't.
Alison/Tink; I remember a lunchtime news programme aired here a few years ago now who had one time had a section they called M.E./Cfs (I won't go into my opinion on their lack of knowledge between the two!) Viewers could text or email in and their comments would be shown along the bottom of the screen. One 'Gentleman' wrote- 'The cure for M.E. is to stop giving them benefits so they have to get off their lazy backsides and work like the rest of us.' Appalling right? What I would give to be able to go out into the world and work, to put to use my passion and determination through work that I have no place to use now. I am not lazy or weak or selfish like he may believe. And nor are most M.E. sufferers who from my experience, like you so rightly say Jodi, are some of the kindest people you could meet. But with comments like his, it is no wonder we can feel judged and worthless!
I also remember when my G.P. told my father that she was 'surprised that I was not fighting my illness'. My heart just sank when he told me. And I felt mortified knowing my family would know! My nana cried when she was told. All because I can not open my curtains without consequently losing essential abilities such as getting to my bathroom or grabbing my food from the fridge outside of my room . If I did not fight, I would literally not be here. It is opinions such as these, and as you accurately say Jodi the whole Cfs propaganda, that have the potential to destroy what little belief in ourselves that we have!
The need to rest with this illness is so often misjudged as lazyness, passive or defeatism. But it is a sheer necessity, and an active action too! Resting when you have M.E. is one of the most essential, proactive things to do, and is most certainly not a person simply 'giving in' or 'letting it get the better of you', nor a sign of a person 'giving up hope'.
Taking action to rest is such a pro choice thing to do, especially for future health. People who do not rest adequately at the onset will almost certainly take longer to 'recover' from the illness or the relapse, and if they do 'recover' they are left at a lesser ability than before the relapse. Resting is beyond imperative and yet as I say, something some people judge as lazyness or a personality trait!
Please none of you doubt your own strength! Anyone with M.E. is stronger than they ever realise.
I also feel it is extra important what with being ill, because if you have even a modicum of self worth (although preferably more), you can believe that you can handle things or 'cope' with things as they arise, which is invaluable with M.E. as it continually flings new things at you to 'deal' with in life.
Jodi/Hbird; Over the years I have come up with some 'tricks' to help myself make sure that I am analysing problematic situations and comments correctly and being fair to myself.
1. Imagine that the nasty and ignorant comment that someone has said to you (etc.), was said to one of your fellow M.E. patients. How do you feel about it now?
(Often we are very willing to take blame for things that aren't our fault, because our self worth is very low due to illness. But our desire to be fair and kind to our friends and fellow patients is often much stronger than our desire to be fair and kind to ourselves. This way of looking at comments said by others helps us to treat ourselves at least as well as we would treat a friend. We have to be a good friend to ourselves when we are ill and being barraged by crap on all sides, so we can stay mentally healthy!)
2. Imagine that the nasty and ignorant comment that someone has said to you, was said to someone with MS instead of ME. How do you feel about it now?
(Often we have taken in the de-legitimisation of M.E. on a subconscious level, and we may accept put-downs that we wouldn't accept at all if we had instead be diagnosed with MS. Thinking about an issue and how it would relate to MS, can help things be put into a proper and fair perspective, untainted by propaganda and misinformation.)
I had one more I am pretty sure but my brain has gone blank!
Alison/Tink; Such a great way of trying to deal with understandably hurt feelings is great and admirable Jodi.
Feeling so continually judged and assessed is beyond draining on already depleted reserves. I know for me this is a daily battle. And exhausting on my opinion of myself. Which is ridiculous because it has absolutely nothing to do with me and everything to do with other people.Yet understandable. But again, the knowledge of which does not often help hurt feelings.
You know during this very blog discussion, there has been yet another bereavement in my family. And yet again I have been reminded of the very thing I find hardest about M.E. This being the powerlessness it brings. All I wanted to do was drive right down to the grieving lady, scoop her in my arms, and hold her sobbing body until she fell to sleep. Yet I was once again, alone in my bedroom. Completely unable to do anything. And again it brought the notion of 'why am I here?'
Now I don't at all mean that to sound overlooking dramatic. But you know what I mean.
Yet I would say to someone in my position that they are so important, and your life is anything but inconsequential. Being you, exactly you, will bring the person in question strength.
It can be so terribly hard to have coping strategies. Regular people can pound it out in a jogging session, eat ice-cream, call a friend and talk it out. Yet so many of us are left to analyze things insideour heads., which is not easy to do when feeling hurt or judged or suffering.
All of this can lead to such a low sense of self worth.
It is terribly sad that so many M.E. sufferers turn to suicide. But I really want people to know that they are worthwhile, no matter how ill or how unable they are.
If you or anyone you know are in this position, please contact us. You are not alone!
So any last words of wisdom Jodi?
Jodi/Hbird; Be kind to yourself and don't beat yourself up for things that are completely not your fault and are out of your control is the most important thing I guess. Talk to people with the same illness and that really get the issues if you can. Try to be your own best friend too and spend some time thinking about the good qualities you do have.
Alison/Tink; Brilliantly said Jodi. As the saying goes 'You're never alone once you've learnt to count on yourself'. Being your own friend, your own cheerleader is so vital to shaking off those false voices in your head saying you aren't enough. Because you do have great qualities, a multitude of them,however unable you may be to see them! We can!!
You are worthy, beautiful, unique, valued, admired, strong, funny, needed, brave, sexy, meaningful, brilliant and a hundred other superlatives that my brain can not cunjour right now!
We believe in you!!
Have you ever heard the quote 'One person speaking up makes more noise than a thousand people who remain silent.'?? Be that one person. Hear your own voice, rather than a multitude of negative ones the world seem to often speak about M.E. sufferers. Or, if you are able,be that one voice for another sufferer. Be heard, your voice matters!
If you believe in each other, and are able, write on the comment stream below. Stand up and be heard in your knowledge that M.E. sufferers are truly worthwhile!!
If we are not there for one another, what hope do we have.
You there, reading this--You matter!!!!
Remember "To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment." - Ralph Waldo Emerson
and
"Nothing can dim the light that shines from within"-Maya Angelou
Before we leave your poor eyes to rest, we would really appreciate your help spreading the word about our blog. If you are able, please share us around on as many sites you visit, Facebook, Twitter, and with appropriate people. Both specific posts and our blog as a whole. To do this, please either copy/ paste the url, or simply use the 'share us' tabs to the right. The more people who read us, and get involved, the bigger the community that we can create, and the more accurate information can get into the world.
We really value your help with this, our beautiful Blogger Arme.
So for now, we hope that you have found reading this discuss worthwhile, and truly hope that you know that we value you, admire you, love you, and think that you are beautiful.
You are worthy and You matter.
Best wishes, Much love and Blessings
The Tinkerbelle and Hummingbird M.E. Blog
x x
©TheTinkerbelle+HummingbirdM.E.Blog
37 comments:
Fascinating conversation guys as always. Some of those comments truly hit home. The one thing about being really ill, whether it's with ME or any other debilitating, long term, chronic disease, is that erosion of our self worth. We are forced to examine the deepest, darkest recesses of our selves, be really honest, readjust our view of the world and refocus on what our true achievements are......which can be something as 'simple' as we have managed to be here to face the day, perhaps have brushed our teeth ourselves, sent a kind word to a fellow sufferer online - these are all achievements and we absolutely need to acknowledge these every single day. You mentioned how kind fellow sufferers are and that they have a kind word for others - this shows that ME sufferers truly understand suffering and the importance of finding any little slice of happiness and comfort. We know the enormous value of giving, as well as receiving. I haven't expressed this as well as I would have liked but hope people do understand the gist of what I am trying to say. We are fantastic, all of us, and we really shouldn't forget it. Thank you for discussing this essential topic Tinkerbelle and Hummingbird, and I look forward to the next discussion :-)
Tinkerbelle and Hummingbird you have raised such an important issue. I may be wrong but I think there will be a great deal of positive feedback from the very people who have lost so much. The list is endless, you lose your health, your job, your friends, relationships break down and you lose the sense of who you are. Society associates self worth with productivity, if you are not actively contributing in the work place or the home you become a non person. However, many people who face constant hardship become resilient, they realise that in order to survive they have to accept and adapt to change. We are faced with endless hours of looking at who we have become, often it comes as a shock to realise you have tremendous courage and even with limited ability you can still reach out and touch others. We are blessed to live in a world where technology connects us, it's that connection with fellow ME sufferers and other Internet users which has shaped my self worth and I Thank each and everyone of you for that.
Wow. What an important exchange. I experienced so many symptoms just while reading it. So much loss, and lost so dramatically. No doubt we could all share hair raising stories. One thing I notice though...something we seem to share in common. Appreciation and thankfulness for the little things. Alone with my kitty, often unable to move for hours, it is nice to come to your websites when possible and read the day to day experiences of other M.E.ers...helps me feel less alone. Bless you. Thank you,
This is such an important topic guys. Thank you for raising it. I think a lot of people out there are afraid to speak about how low their self-confidence and self-worth has become for fear of being named a psychiatric patient, a label many of us already wrongly endure.
A long time ago, before my M.E., I had a few problems and suffered with depression and a friend of mine gave me a cope of a Maya Angelou poem, 'Still I Rise', saying that it reminded him of me. I found it a few days ago and it really warmed my heart to think that if he could see me now I think he'd still feel the same. It reminded me of all of us, rising up out of the ashes of our broken bodies and refusing to let our spirits be broken too.
I now fight a very different battle to the ones I faced as a teen but still I refuse to let my illness win. Yes, I have to make huge concessions in order to give myself some sort of life rather than mere existence but I keep on fighting and I do it with a smile on my face (most of the time) and no matter what this illness throws at me, whatever else it strips me of, I will not be beaten. Still I rise! :)
Big hugs to all my fellow warriors!
Caroline. xxx
I love it Caroline. "Still I rise."
Great topic, thanks T/H !
Lots had to be stripped away so I could see my true worth clearly. Leaving behind many of the things available to healthy people...job, friends, helping others, shopping, teaching, creating, playing hard, working hard...put me on a inward journey... a long, hard, upward struggle to find my self without trappings.
It took a long time before self-acceptance and self-trust came, when it became more of a natural way of thinking, instead of a fight to think the "right way." the head knowledge of being covered in the beautiful, undeserved, shining glory of Christ Jesus, turned to heart knowledge and integrated into my whole being.
Where I am today (with acceptance and trust) has taken twelve years and I still have much further to go. I heard we can learn from painful experience, or loving unfoldment. I'm choosing loving unfoldment these days.
My illness has been a marvelous gift and has educated me as nothing else could.
Today I don't have to let my feelings direct me. So thankful for that. Some days, they can get the best of me, but even then, besides crying, and having a marvelous pity party, I don't take myself too seriously. I became sick and tired of trying to legitimize taking up breathing space and sick and tired of trying to correct people and teach them what life was like. (unless they sincerely loved me and wanted to know).
People are always going to think ignorantly and will never change their preconceived, idiotic, unkind ideas unless they have some kind of spiritual experience, or they go through it themselves. Thinking the worst unfortunately is part of human nature. i think it's a protective measure. "If I can make myself believe it's you're fault you're ill, and if you'd just eat right, exercise, think positively snd just buck up, you'd be fine. Then I don't need to worry about anything like that happening to me. I'm healthy because I do things right." If they think this way, they can keep their illusion of control and not have to look at their powerlessness over some things in life.
im having such a crappy day but reading your blog has lifted my spirits - thanks guys :) xxxx
Well said caroline. I wish I could take credit for the "still I rise" comment but it wasn't me. I appears that there is a new Caroline who also puts kisses after her name lol but not me so hello Caroline. I will comment on the MEite site but wanted to clear up the name thing.
Such great comments you guys! (This blog was slightly daunting to write!) You all make lots of good points...I could go on and on about them all, wd like to but must be brief today. Hugs to you all! Thanks so much for taking the time to write too, I know how hard it can be.
Dearest Jane. You are so right, the fact that we go to such lengths for other sufferers is indeed that we all have ourselves felt the true torture of this illness. Thank you as ever for being perfect. Thank you for sharing and being a huge part of our community. You are beautiful. X
Dearest Janet. Hi ma'am. Thank you so much for commenting. You are so right about courageousness! And that technology is such a blessing. Most of my relationships are facilitated by it! You may thank fellow sufferers, well we Thank you for being a part of our community! you are beautiful.
Dearest Janet. Hi ma'am. Thank you so much for commenting. You are so right about courageousness! And that technology is such a blessing. Most of my relationships are facilitated by it! You may thank fellow sufferers, well we Thank you for being a part of our community! you are beautiful.
Dearest anon. Thank you so nub4 taking the effort to comment. We so appreciate it! So sorry we caused you extra symptoms, but god you found it somehow worth it! What's your kitty like? We have a blog about pets soon! you are beautiful.
Ps would you consider a code name or pseudonym for future commentings? Absolutely ok if not, but give me a holler if you need help.
Dearest Caroline, thank you for writing so touchingly. You are right about how terrifying it can be to be honest and open about feelings when you have M.E. due to the misbelief about psychiatric disorders. I personally find it impossible with even those closest to me.
Also Personally i adore poetry and love the one you refered to. For a poem about race, it is so multiuse! You are beautiful. X x
Dearest Tami. Hi ma'am. Thanks so much for sharing your battles. Only by sharing our own others know they are not alone. You have indeed come a long way, deservedly, you should be proud! You are beautiful! Ps welcome to our community! God bless
Dearest lina. Hi ma'am. So sorry to hear about your day, is there anything i can do sweet heart? Thank you so much for commenting, feedback means the world you've no idea! You are beautiful! X
Dearest Caroline with the kisses (i know you both use kisses but you mentioned it!), thanks for clearing that up-, selfishly i love our community is large enough for multiple person names! Look forward to your full comment. You are beautiful!
Ah bless, you're great. Aren't our arme amazing! Take aftera certain co-authoress! Love you!
Bless your heart Sweet Allison...you are a gifted encourager. Tami
Ah ma'am, bless you for that, what a kindness!! but you are the gift, all of you! Truly. God bless! X
Hi. Great important topic. I am besides myself. Feel so empty and alone. Dealing with rejection from friends and family. Really appreciate being able to come here and share. Thank you so much. Anony-1
In European society, the first thing people want to know (after your name) is "What do you do?"
You're quite right: we are defined by our actions. So those of us who can act so little, are greatly diminished.
It's hard not to feel just like a shadow or shell of your former self, when you're always so exhausted, physically and mentally. Even your emotional/spiritual strength is chipped away by suffering, since it needs energy too. Yet we continue.
When people ask, "How are you?", I tend to answer, "Still here".
And I am. :)
I've only just found this blog & this is the 1st thing I've read, how true it is! I was never the most confident person & ME took away my faith in a lot of stuff including myself. I once asked my Dad if he thought my life was a waste/ I was wasting my life (as if I have a choice!)& I'm afraid he said yes he did (he still believes this is the case) because I "don't 'do' anything". That gave me quite a knock back, it's hard to feel worthless isn't it? But after many years I can now see my life *does* have worth & I am important: just because we haven't achieved the 'normal' stuff or lead a 'normal' life doesn't mean we haven't achieved things, in fact just being here & able to enjoy life in whatever way we can is a massive achievement for so many of us. A friend put it beautifully when she said: "You are wonderful & courageous & your light is important no matter what you can or can't do.". How true this is.
Better go, hi to you all,
Amy
Dearest anony-1.
(thanks for using a code so i can keep track)
Oh sweet soul, i am so sorry that you feel alone. There is not much that i can do, but i am here for you. Please feel free to email me if ever you are able. Thank you so much for sharing your loneliness. This will help others in similar situations know that they are not the only ones! How very sad that is! I hope to speak to You sometime. You are beautiful. contactalisonlouisebell@gmail.com
Dearest Clytie. Thanks so much for taking the effort and time to comment, and for sharing! I too often reply 'still here' when asked how i am or how things are. Bitter sweet i think! And it gets very mixed responses! Welcome to our community! You are beautiful! X
Dearest amy. Welcome to our community! (how did you hear about us?)
You are so beyond worthy, whatever your dad feels. It is such a shame when others limited view of achievements affect our feelings about ourselves. You are worthy because of who you are! Thanks so much for sharing difficult things. They will help others! And im sure our Blogger arme say hi right back at ya! You are beautiful. X
Hi all. Just wanted to say how moved i am that you believe in one another enough to be motivated past the difficulties it takes for you to be able to comment when we know how horribly incapacitating m.e. can be! Thank you for believing in one another, may you too believe in yourselves! We believe in you! X x
Thank you Alison for your wonderful support - and hello Jodi whenever you see this. Yesterday I had to go out - my cell stopped working and had to be replaced. They no longer carried the one I had - now have a cell that feels so heavy... but I must be thankful. The cab took over an hour to pick me up to go home and today I am so ill. Coming to this blog is so important to me. My family has been so cruel. It is not even emotionally safe for me to contact them anymore. So bear with me if/when I come here to vent or reach out. Really really appreciate it. Toodles for now wishing everyone the best. Anony-1
Thank you Alison,
I just came across your blog while having a wander on the Internet (I recently received an iPad & it's transformed my ability to use the computer. I wasn't keen on getting 1 but it's brilliant). I'm still working my way round your blog & I will share it with my other ME pals in due course. You're both amazing doing this & reaching out, thank you! X
Dearest anony1. Thanks so much for your contact. Means so much! I am sorry for your phone ordeal. Technology can be bittersweet! I am truly sorry that your family has been so cruel as you say. Please know you can contact me anytime. To reach out or vent, or for anything at all ( contactalisonlouisebell@gmail.com ) i am sure all of our Blogger arme would also send huge but tender huglets to You too! Much love X x
Hi again ma'am. That's so cool how you found us. Isn't the internet a blessing at times! I do everything on my smartphone. I am so pleased to welcome you to our community. If you ever want a chat or need anything my email is contactalisonlouisebell@gmail.com Also so glad you say you will pass us to your fellow m.e.'ers. So proud! Much love X
Alison & Jodi - Thank you for saying out loud what a lot of us feel. It can be so difficult to verbalise what we feel inside.
I've had ME for 20 years and feel so alone. I don't really have anyone that I can share things with or emotionally unload to, as I'm worried that the few friends I still have will get bored/turned off. They seem to think that, because I've had it so long, I should have 'adjusted' to it by now. They just can't understand what it's like to live with severe ME 24/7.
I always feel that I have to do my best to appear 'normal' to be accepted - they can see the physical disability (I can't hide that I can't walk), but don't understand what a huge effort any interaction takes. I always feel as if I'm sooo boring to them, as I never do anything, so don't have new topics of conversation.
It's so good to know that I'm not alone. That, far from being a wingeing, moaning person who depresses everyone, infact I'm the opposite - it has taken your comment to look at myself as if I'm someone else with ME, to realise that in fact it takes huge bravery to get up and try to interact with the outside world at all.
As someone else has said, my relationship with God is the main thing that gets me through the dark times.
Thank you again for this blog.
xxx
Dearest tina.
Hi ma'am. I can't thank you enough for sharing your feelings. It is only by doing so that others know they are not alone. You are so much stronger than you realise by the sounds of it. Please know that you can email me anytime for whatever kind of chat you like- my ears hear everything, with no judgement! Would be an honour ( contactalisonlouisebell@gmail.com ) personally I too feel my love for the Lord is a greatest of blessings. Nice to have someone i can say that to- the ppl nearest my life do not have the faith i do. So, thanks once again. I know too well how difficult it can be to comment, let alone to find the words to do so. Hope you can keep in touch, if you are able. Much love. Alison God bless
Thank you everyone for your contributions ... I see someone in comment alone with thier kitty ... me too. And yes! we have such hair-raising stories and expereiences which we have to overcome. While our outer worlds have been altered beyound recognition there is another world we inhabit so many "regular" people pay so little attention too. Reminds me of the idea that -for example - a person who has lost their sight develops enhancement of hearing. We who have lost so much have also gained a special access to the world of inner-ness, faced with ourselves day to day - not redefining who we are, but re-discovering who we are in all our inner wonderousness. I pray for us...Bless you Tink and Humm...
Anony-1
Привет Всем !!
Anony1, i am so beyond sorry that i missed replying this lovely comment of yours! Thank you so much for commenting, it means so much! You are so right, You know from the contact i have had with people who read the blog, its remarkable how many agree that we find ways to appreciate tiny things! Beautiful things! Huglets to you and your kitty. God bless x
I Don't speak Russian myself so had to Google translate, but hi back at ya! Hope you are as ok as can be. God bless
Hugs to everyone that has written a comment...and hopes for all of us for a more supportive social and familial environment for MEites generally. It is so needed.
Post a Comment