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Sorry for not writing in a while, I’ve had a rollercoaster few months with med changes- you know how it is.

Something I’ve discovered over these past 6 months since getting diagnosed is that even with a diagnosis, even with a reason for the daily struggles- healthy people still don’t get it. I thought once I got diagnosed it’d make things easier because people would believe me and come to a greater understanding because there is something really wrong, but the sad truth is… they don’t.

But you know- even though that can hurt, it’s okay. Because you learn how to rely on yourself, how to be strong. There are times though, when it all gets too much and you need somebody. This is why I think websites such as TDC are so valuable. You really do make real connections with others who UNDERSTAND because they know what it’s like. They can support you over the internet better than your best friend, your partner or your family sometimes can in person.

That’s not to say you don’t need your best friends, partner or family’s support. That’s invaluable too. But you have to remember that they will say and even do things that hurt you- and it’s not because they are bad people. It’s just that they don’t understand. They don’t know what to say or do. They get frustrated with it too and sometimes, sadly, may inadvertently take that frustration out on you. Remember though, their true anger lies with the illness and not with you.

I guess it teaches you to communicate better. You have to be honest and vulnerable at times. Sometimes you have to ask for help when you really wish you didn’t have to. You have to accept help when you wish you didn’t need it.

All in all, tough to deal with though it is, chronic illness can be a great teacher. It can teach you how to be brave, strong and compassionate- both with yourself as well as with others. It can teach you how to be a great person even when you feel weak and useless. It can teach you better communication with others- because you can’t make anyone else understand. All you can do is learn how to help them to.

The sad truth is, you will lose friends, because many people don’t have the patience to stick around in a friendship with someone who can’t do the same fun things and who often has to cancel plans last minute. I think this boils down to a trust issue- they can’t trust you to do X,Y,Z with them or turn up to P, and because they don’t understand what it’s like for you to not be able to trust your own body, they distance themselves from the relationship. They stop trying. They don’t know how to show support, so they don’t.
The sad truth is, relationships will be more challenging and may even end.
The sad truth is, friends and family may not believe you could really be suffering what you are indeed suffering.
It’s sad and it’s true that most- perhaps even all of us to some extent- have to deal with that as part and parcel of dealing with chronic illness. But…

The beautiful truth is, there are people who will love you regardless. Who will see through the illness to the person that you are. Who will love you even more because of your inner strength and beauty. Who will see truly what an inspiration you are.
Your job on this journey is to find these people and when you do, make sure they know how much they mean to you. How what they do helps. How special they are. Because truly, people like this are rare. That’s sad because it means we have to suffer a lot of loss, hurt and disappointment from interactions with those more common people who let us down. We suffer loneliness, isolation, emotional pain. But that’s what makes it all the more meaningful and beautiful when we do find people who stand by us.

So- to those people in our lives who we can count on to stick around- a heartfelt thank you. And for anyone who’s lonely and isolated out there- let one of us be that person for them. Reach out and connect- isn’t that what life is about? At least one good thing about being chronically ill is that we are learning how to make true, meaningful and lasting connections with other people. Connections based on true friendship and real love. Let’s celebrate that with gratitude for some of the wonderful lessons we are learning in the midst of the struggles we endure.

To true friends!

I’ve just started reading this book, and I think it’s going to be great, so I decided to share parts of it with you readers as I go through the book.

So, to begin with:

“Getting well or overcoming illness doesn’t necessarily mean cure and it doesn’t mean living forever. Nor does it mean a list of dos and don’ts, pills to take and foods to avoid. It means improving our condition and gradually making our lives happier, healthier and more fulfilling.”

That’s what personally, I’ve always been aiming to do. I know I’m ill, I’ve known it for long before it was officially diagnosed as POTS on 9th April. Some things you just feel, when you are sensitive and in tune with your body. But I’ve also known that I have a strong determined spirit, and whilst the trials and tribulations of illness can certainly dent it at times, I vow it will not be broken! I’ve always determined to do whatever I can do to live my life to the fullest I can, despite having dysautonomia.

So, right from the first couple of pages I thought- yes, I like this book!

I also liked this:

“Unlike some other self-care books, this one doesn’t say we make ourselves sick or think ourselves well. It doesn’t say “Take control of your life” while glossing over the difficulties involved. It doesn’t even say “Follow your Doctors orders” Instead, it gives a practical, 5 step program for recovery.

1. Slow down: save some energy for your body and your life, instead of giving every last ounce to work, worry, other demands or entertainment.

2. Make a change: Change something in your life that’s damaging. No matter how small, any successful change builds self confidence and makes the next change easier.

3. Get help. None of us can do it alone; life is a co-operative effort. Learn to find and ask for help.

4. Value your body and your life: Listen to your body and treat it with respect. Fill your life with more pleasure, love and reasons to live.

5. Grow up: Educate yourself, take responsibility, be assertive. Accept yourself the way you are, but don’t give up on getting better.

Sounds good to me. I’m looking forward to reading the rest and sharing it with you readers. But for now, I’m going to start using the program, and do steps 1 and 4, by listening to what my body is telling me and having a nap. I’ve felt exhausted all day and been stubbornly trying to just keep going just because “I’m supposed to”. Well, says who? Sometimes I am too hard on myself, even after all these years. There’s no shame in needing a nap and it might just refresh me and help me have a better evening. So, much as the book has interested me, I’m going to pay attention to my body and take that nap right now. 🙂

Laura Posting.

I keep telling myself that no matter what, I am going to live my life to the full.

But I wonder, what connotations does that conjure up in others? What does the phrase ‘living life to the full’ make you think of?

I could understand why some people with chronic illness might think ‘huh, this illness has robbed me of so much I couldn’t possibly live life to the full. That’s for people with unlimited amounts of energy and the freedom to do what they want without having to worry about their symptoms.’ But that’s just a viewpoint on what it means- not what it really means.

So I guess what I am telling myself is that I am going to live my life to my version of ‘full’.  So I’d be interested to know- what would your version of full be? And I don’t mean the things you can’t do that you wish you could, and if only you could then you’d ‘live life to the full’, I mean the things you can do even though you are ill. Things that you enjoy doing, even though you are ill. Things that give your life purpose and meaning, even though you are ill.

Because being ill doesn’t mean your life has to stop, dead.

So for me, living life to the full is…

Having good relationships with people. Anyone can have that, regardless of state of health. I want to have a life filled with loving relationships and laughter, to care and genuinely be cared for in return. That’s important and so valuable to me.

I want to reach out to others, offering inspiration and hope. That’s why this blog exists.

I want to keep my mind active, by reading and learning lots, by writing. That’s why I read, watch documentaries, enjoy intellectual discussions, and do my own writing as and when I can.

I want to go out and have fun. So I carefully select times when I feel I can do that. I invite friends. I organise parties. I do so at times when I have little to nothing else to do so I know all my energy can go into that. But sometimes, I go to parties when I’ve been quite busy- because even if I feel physically drained afterwards, emotionally I feel revived- and I can always rest my physical body. Even if it takes me 2 weeks to recover from a party, I’ll be remembering the fun that was had for months or even years to come.

I want to travel and see the world- so I am going to Peru in November, by myself. Even though I’ve never flown long haul. Even though I don’t know how my body will cope with the altitude. Even though I’m terrified about whether I’ll manage, cope. What about the brain fog, how will I keep all my important documents and belongings together? What if I get dizzy and can’t breathe? Well I’m going anyway and I’ll find out! If I can’t then I can’t- I’ll drop out of the climb or whatever. I’ll enjoy other sights whilst doing other things. What matters is that I give it a try! And if I have to push I will push. If I end up feeling exhausted and doing much of nothing for months afterwards, it will be worth it for the memories.

Basically, I don’t know how long I’ve got this body for. It might not work as well as I wish it could, but I’m not going to let that stop me squeezing the zest out of life.

I will party, travel, write, learn, find friendship, love joy and laughter. Dysautonomia might make me feel like crap but it can’t stop me. Even if I was in bed and couldn’t leave the house (and I did go through a very tough period where I couldn’t do much at all, although I didn’t know what was wrong with me at the time- and it wasn’t a brief period either, it lasted more than a year) I would find a way to feed myself joy, happiness, laughter- the nectar of life.

So- if you were to live your life to the full- despite dysautonomia or whatever illness you may have- what would you do? And if you are already doing so, what are you doing?

I think my motto in life now is: I might have an illness, but I also have a life!

True, this illness might be my companion in life, it might follow me around wherever I go, it might even dictate to me at times and stop me from doing some things, but there’s always so much more life has to offer. So if it stops me doing one thing, heck I will find another!

So, forgetting about all the things you have lost and mourned (because it’s only natural to be sad and go through periods of mourning)- what are you going to do to live your life to the full- that’s your full? How will you drink your fill from the wonderful well of life- find the blessings and the gifts each day has to offer?

Keep asking yourself how, keep finding the answers- hold the hope, joy and determination in your heart and never let it go. DARE to dream. DARE to transcend your limitations. Physically, you might not be able to- but your mind is free- so give it wings and FLY.

Laura posting!

I think when you have a chronic illness, you appreciate ‘little moments’ more. So, here’s one I just experienced that I’d like to share with you.

I was working doing my counselling/NLP/hypnotherapy. My client is sitting in the chair to my left, I’m teaching him an acupressure technique for subconscious healing. He’s holding the acupressure points while I am reading out the healing statements he is to focus his mind on.

Dark, gloomy clouds gather overhead. Rain begins to tumble down, pattering at first on the glass roof- moments later, a cacophony. I watch it bouncing off the tiles of the bungalow roof at the bottom of the garden. Shards of sunlight appear through a break in the clouds- overhead glints a rainbow.

As my client reaches the final healing statement the rain stops. There is profound silence, almost breathless. Almost like the weather knew… was pouring down as he moved through his grief- silenced as he found his peace.

The rainbow glimmers overhead in the sky- perhaps a sign. After every storm, there is the rainbow. The light always shines through in the end. The silence, peace, holding us in comfort. We sigh.

Laura Posting

Words have the power to both destroy and heal. When words are both true and kind, they can change our world. (From Facebook Daily Zen).

I wish people would remember that more often. Yesterday, a friend sent me an email that a friend had sent her, and in it this person was basically saying ‘Well when I was ill and going through what you’re going through, I just put mind over matter and got myself up and about and then everything was fine, you should do the same instead of feeling sorry for yourself and letting your illness win.’ They even ended it with love and a desire for my friend to be happy.

Hey, I’m a big advocate for positivity. For being determined, for fighting, for never letting hope die. But I think it’s also very important to accept the illness too, and the fact that sometimes, there will be days when you can’t do much and there will be times when you feel down and sad! It’s a very delicate balancing act, and words like that just deny the suffering part of things and make a person feel as if they almost have no right to be in pain, to be sad. That they should just ‘suck it up’ be ‘stronger’ and fight through it.

Sometimes though, you can’t. And true strength comes from recognising that, accepting it, and then working on being as mentally and emotionally positive as you can be despite it.

Sometimes, I think people with chronic illness (or even an illness) who have been lucky enough to be able to lead relatively normal lives are even less compassionate and understanding than healthy people who’ve never been ill. They mistakenly believe just because they could do that, then others should be able to- and so they have no empathy for those that can’t. They judge them, and in this judgement, they are harsh with their words. Maybe it’s because they are scared of ending up that way. Maybe it’s because they never faced up to their own pain but blocked it out, shut it down. Perhaps it threatens them to see someone willing to embrace their emotional pain and be real about it.

I don’t know, and quite frankly, I don’t want to know. People like that can, as far as I am concerned, just go and get on with their lives and leave their advice- however well meaning it might be- the hell away from mine!

Laura posting.

I was thinking just now about the wonderful new friends I’ve made who have dysautonomia. How much understanding and support we share. What great people we are.

I started thinking to myself and wondering what life would have been like if I hadn’t gotten ill.

But- I wasn’t thinking ‘if only I hadn’t gotten ill then I could do x, y, z’. No. I was thinking- if I hadn’t gotten ill, I wouldn’t be the person I am now and I actually really like the person I am now. Don’t get me wrong, I don’t like a lot of the symptoms and frustrations that come along with having dysautonomia but in a way, because of them I am a better person. Because of them, I am more compassionate. I can relate to suffering in others because I have suffered myself.

If I hadn’t gotten ill and suffered the resulting depression, I would never have gotten into my field of work (hypnotherapy).

I went through a really tough time when I was first ill. I didn’t know what was wrong with me and I was terrified. I was nauseous all the time and could barely eat. I lost a stone in weight and I was already very slim to begin with. The doctors couldn’t find anything wrong and put it down to ‘stress’ and ‘panic attacks’. Family members asked me if I had an eating disorder. I wanted desperately to be able to enjoy food again but I felt sick to my stomach every day. I was panicking because I was terrified I’d never get better because no one, least of all myself, knew what was wrong. Every strange symptom I had, I blamed myself for. I felt weak, stupid, a failure- like I was creating it all myself by ‘panicking’. I had no idea I had a physiological problem causing all these strange symptoms!

But- because I thought I was to blame, I didn’t end up suffering with the helplessness a lot of people feel when they get a diagnosis and know something is ‘wrong’ with them. Because I thought it was my fault- I took action! I read all the positive and inspiring ‘self help’ books that I could. I cured my own depression by giving myself hope, by becoming emotionally strong- positive- a fighter. It took time (years in fact) and tenacity, but I did it!

If I’d never been ill in the first place, I would never have found this depth of strength and inner light within myself. I’d always wanted to reach out to others and inspire them, but if I’d never been ill, I would probably have never found a way to do so. But now? Now I can. Because I understand suffering- I’ve been there. There was a time when I honestly felt like hope had died within me and that things would never get any better. I remember the moment. I lay on my bed in the gloomy light after winter sunset and I just didn’t want to get up. All I could see ahead of me was a life of endless suffering and if that was to be my life, I didn’t want it.

But even in the most awful of circumstances, hope can grow. So if you or anyone you know is suffering a lack of hope, don’t despair. Things can and do get better. It takes time. It takes patience. There are ups and downs. But you will find that you have an inner strength and fighting spirit you never knew you had. Let it drive you on, fuel you forwards and you never know what you might achieve. Even if it’s something that to others seems insignificant, like getting out of bed. If that’s significant to you and something that you find hard but you manage to do it, then that’s more courageous and inspiring that adrenaline junkies bunjie jumping for a thrill. Never sell yourself short for all the little ways in which you choose to go on living and surviving each day. You are stronger than you know. Let the peace and inner strength from really believing that wash over you, and spur you on despite your illness.

Beautiful blessings are here in this world for everyone, no matter what.

Don’t you ever forget it!

Laura Posting.

Inspired by Kyli’s post

Regardless of whatever the limitations we have might be- we are worth getting to know. There is a person underneath the illness who deserves to be seen! It might be hard at times for that person to be recognised, but they are there. Perhaps it takes a special kind of person to see that… which is why I am grateful for the good friends (and my boyfriend of course) that I do have. Even if they can never truly understand, at least they can see beyond my illness to the great person that is ME!

So remember- no matter your symptoms, no matter your hardships, no matter what you feel dysautonomia has taken from you- you are still you- and you are still worthy of love, laugher, happiness, joy, friendship and good times. Don’t let it rob you of that.  I know it’s not always easy when the symptoms cause physical and emotional pain. But we are “No Limit Soldiers” if we choose to be. Look out into a world with no boundaries. Focus not on what dysautonomia has taken from you, not at what you can’t do- but at what you can do- with all your courage, your compassion, the unique voice that is yours. Every single one of you makes a difference. Every single one of you matters.  Never forget it.

Laura Posting. Hope everyone has had a wonderful weekend!

So. Attitude.
This is something that has been going through my mind on and off, at times without me consciously realising it. I’ve always been a positive person, but at times seeing what dysautonomia can do to people, it’s bloody frightening!

I count myself incredibly lucky that I can still walk (for miles) and lead a relatively normal life on the surface. Even though I have to handle pain and fatigue and various other symptoms in order to do so, I can handle that. Some people don’t get that choice. Some people can’t walk or even stand up. That must be terrifying, heart breaking and so terribly frustrating. I don’t know how I would deal with that. I HOPE I’d deal with it how I’ve dealt with every adversity in my life- with inner strength, determination to fight and improve and, failing that, determination to be as happy and positive as possible, no matter what.

That’s what I find so inspirational about many of the new ‘POTSy’ friends I have made. They have it much worse than I do, symptoms wise. But they are ALL so positive, such an inspiration to me and to others.

So what all this got me thinking was this: no matter what POTS/dysautonomia does to our bodies- even to our minds with the dreaded brain fog- it CANNOT change our attitude in how we deal with it. Of course, it’s only natural to get fed up, dispirited, anxious and depressed at times. That’s all part and parcel of dealing with a chronic illness. BUT- it doesn’t have to be that way always. We can build up an inner strength and spirit. We can determine to look for the silver lining of every cloud.

It was Victor Frankl who said that the last of the human freedoms is choosing our response to what life brings us. When imprisoned in a concentration camp, he noticed those that died soonest were those that had given up hope.

So, no matter what battles we face with dysautonomia, let’s vow to NEVER GIVE UP HOPE.

Because, no matter what happens- life is still beautiful. It’s still out there. We just might have to experience it in different ways than we expected. We might have more hardships to deal with, but that doesn’t make life any less wonderful.

We have the freedom to choose how we respond to dysautonomia. Let’s respond with courage in our hearts and the conviction that no matter what, we will not let it beat us. No matter what, we will see the rainbows through the rain, emerge from the shadows into the sun.

It can only win if we let it. Lets not forget that the body is a temporary dwelling. The spirit is what’s real, true and pure- and dysautonomia can’t touch that, not really. It might seem like it can sometimes, because we’re only human and we do get upset and disheartened. But we can overcome that if we remember- we are more than our bodies. We are amazing beings with a vast capacity to love and to endure. Dysautonomia, whatever it might take away from us, cannot take that away.

I owe thanks to my inspirational POTSy friends and to my amazing boyfriend for fuelling the ideas and feelings in this post. He played me a tape today, Tony Robbins interviewing Norman Cousins about diagnosis, illnesses, health and the attitude of one’s mind. Norman said what we must do is not deny a diagnosis- we can acknowledge that we have something. BUT we can defy the diagnosis. What he meant by that was- realise that we are much more than any illness we might have, and that with the right attitude, we can prevail against it, no matter what.

Laura posting- this is still a hot topic on this blog today! I’ve noticed quite a bit of ‘hoo-har’ on Gwen’s new page she created for talking more freely about dysautonomia, saying that she’s ‘separating herself’ and suchlike.

Well, I disagree with that and here’s why. If you find lengthy diatribes* horrifying then you might just want to skip this post entirely 😉 I just can’t do concise when I get going on a topic!

Separating accounts in order to talk about different things on each does not mean separating yourself or being any less ‘real’ on one account than another.

I’m going to try and simplify my argument here.

These are the bare bones of my argument.

People relate to others with common interests and experiences.

Sharing thoughts, ideas and experiences with people who can relate is easier than trying to share them with people who can’t relate.

Talking about things with people who can’t relate just alienates them and causes a rift between you.

I don’t want to alienate my friends and cause a rift between us.

Therefore, I choose to talk in depth only about the things my friends and I can both relate to.

Creating a separate facebook account for talking with people who can relate to chronic illness was an easy way for me to do this, so I did so.

Conclusion: I have one account where I can relate to others by keeping in touch via photos, status updates and wall posts, but where I don’t  talk in any depth about topics like dysautonomia that they don’t understand and can’t relate to. I have another account where I can relate to others by offering support, understanding and encouragement about dysautonomia, and by posting my own thoughts and feelings about living with it. On both accounts I am being myself and relating to others, just in different ways!

And the rest…

The nature of people is to choose to be around people they can relate to. I’ll stick with the same analogy. If I go out taking pictures with a group of photography buddies and then later we look at slide-shows of the pictures we all took over cups of tea and have a jolly good chat about apertures and what not, then we’re all going to have a jolly nice time. Why? Because we can all relate to one another.

However, if I went out with my photography buddies and talked on and on about bird nesting habits, I’d probably bore them. They care about me but they don’t care about the topic.

If I insisted on going on about it, or even simply mentioning it every time we hung out, they’d start to get fed up of being around me. Not because they’re bad people. Not because they don’t care. But because it’s a simple fact that we hang around with people who we can relate to.

So, the reason I wanted a separate account purely for posting about chronic illness is not to hide it from friends or people who know me through facebook in general, but just to be able to virtually ‘hang out’ with people who can relate. Because, the fact is I know most of the people on my ‘real name’ page cannot relate to anything I’d post about chronic illness- so I don’t feel comfortable posting anything in depth about it.

I wanted to feel comfortable, ergo I created a separate page, so I can interact with people who can relate.

My friends who cannot relate and would get bored or misunderstand my intentions in talking about POTS/dysautonomia etc are not bad people and  it’s my choice to share only glimpses of that world with them- because no matter how close we are, they still aren’t going to get it with the depth and understanding someone who’s lived with it gets it. Therefore, the only people I want seeing right into that world are the people who I know can relate.

This does not mean I am separating myself by choosing not to go in depth about it with certain friends. I simply choose to discuss it with the right audience- those that can relate to it.

Back to what I said about people caring about me but not about the topic. No matter how much someone cares for you, if you go on and on about something they have no interest in or understanding of, pretty soon they’re going to think “Gee, hanging out with so-and-so is just no fun anymore.” I wouldn’t do this about birds so why should I do it about chronic illness?

My Mum loves me very much and I have no doubt about that, but she hates me talking about my illness and when I do so, it drives a wedge between us- she says things that hurt my feelings and I get angry and frustrated at her. To continue talking to her about it would be like banging my head against a brick wall and then wondering why it was bleeding. It’s pointless! So I might as well find someone else I can talk to about it, someone who can relate. The fact she can’t and doesn’t want to hear it doesn’t make her a bad person. The world isn’t so black and white. It’s not a case of “oh if your friends don’t like it then they’re not really true friends- just be yourself.” We all have to adapt to different circumstances and like I said before, we don’t have a fixed personality- we’re not always exactly the same with everyone we interact with.

Your friends might not like hearing about your illness for their own personal reasons which are as equal and valid as your personal reasons for wanting to talk about it.
They may feel uncomfortable with you talking about it because they don’t understand what it’s like- they might be scared they will say the wrong thing, or just not know what to say. If you keep going on about it and don’t respect their feelings, they might start to feel anxious and uncomfortable around you. Those of the “be yourself” argument would again probably say ’so what, if they can’t accept you as you are then they don’t deserve to be your friend’ but to that once again I say it’s not that simple or black and white.

If you keep an open mind to how others might feel and react to what you say, you might realise that not everyone is comfortable with open-ness about illness. That doesn’t make them wrong or bad. And you adapting yourself to that situation by talking less about something important to you doesn’t mean you are hiding or conforming. All you’re doing is toning down what you say so that you meet people at a level in which you are both comfortable.

Those of the “be yourself” opinion might disagree. But what if having a separate account IS ‘being yourself’?- After all, what being yourself really means is being true to yourself.

Just remember there are many colours in the world and trying to categorise things into black and white terms is like trying to contain the diverse and wonderful universe in a box. We’re all different and whether you agree or disagree, that’s what makes life wonderful. Just don’t impose your beliefs on another and make them feel like they are wrong for it just because it’s against your beliefs. For them, it could be absolutely the right and best thing.

So really what I’m arguing the case for here is this: whatever is wrong with adapting your behaviour to the situation if it means hanging on to the people you care about?

I have a lot I want to talk about in relation to chronic illness- the frustrations of being undiagnosed, the fear of not getting the right diagnosis, the hope, the losses, the gains… but I just wouldn’t choose to talk about all of that with anyone who hasn’t been through it. I adapt my behaviour- the topics that I choose to discuss with friends- depending on the friend I am talking to, so that we can always meet at a level in which we relate to one another.

People who haven’t been through all I mentioned above just don’t understand. Add that to the fact that society has moulded us in a way that health things are ‘taboo’ and you find that more often than not, talking about illness leads to negative judgements- people see you as being negative or obsessed about your health. They can’t see the positive side of it. It’s not because they are bad people- they just can’t relate because they don’t understand! They still care about you and  want you to be happy and to feel good, but that doesn’t mean they want to hear the ins and outs of your illness or your ups and downs battling with medications/doctors or all of that. Some people just aren’t comfortable with that- and that doesn’t make them bad people or any less of a friend to you.

Having two accounts I just see as me being me in two separate places and in two different ways, the same way I’d be if one day I was hanging out with bird-watchers and the next I was hanging out with photographers.

I mean, back to Gwen’s facebook page comments. I don’t see her saying to people who choose to bitch and moan on their one facebook page “Oh I don’t agree with what you’re doing, it’s imposing your beliefs and feelings about chronic illness on healthy people and they might not want to hear it and you might lose them because of it.” Different strokes for different folks people! (Wait, aint that a weird sex metaphor? Oopsie! haha).

No, what I am getting at, what Liz is getting at, what Gwen is getting at, is that we’re all different and choosing to have an account where we can be more in depth about chronic illness amongst people who relate, or choosing as Liz did to have one account with a pseudonym so that old friends/family who turned out to be unsupportive or back-stabbing don’t find you- is simply a personal choice and one that we shouldn’t be judged for.

*this is an example of what happens when the brain fog stops. I pluck out a word from the vast reaches of my subconscious that I didn’t even realise I knew!

Laura again.

I noticed on Gwen’s new account that some people were questioning why she’s made a second account to talk more freely about POTS etc. They were telling her she ‘shouldn’t have to change for anyone’ and it got me thinking. While on the face of it you might think that is true, and everyone says ‘just be yourself’ when you really think about it deeply, there is no fixed personality that makes you YOU. You are whoever you want to be at any given moment in time.

My friend Margit is very exuberant and bubbly; when I’m with her, it brings out that aspect of me. I’m louder, more extroverted. I have great fun- she fires up my energy!

My friend Michelle is much quieter and when we’re together, I’m less extroverted. We chat ‘normally’, and are more refined.

Yet both of these behaviours are part of me. I’m not one person with Michelle and another person with Margit. I’m just different aspects of myself.

It’s a well known anecdotal fact that people who don’t have chronic illness most of the time just don’t get it.  And who wants to talk about anything with people who don’t get it? It’s like, say you have two hobbies, photography and bird watching. One of your friends knows photography and the other knows birdwatching. Well, you’re not going to bang on about apertures and focal lengths to the friend who likes birdwatching- because you know they just won’t understand and will find it boring because they are not on that wavelength. But if you talk to them about migration patterns and the dawn chorus, then you’re cooking with gas because they’ll be interested and want to join in! Now, just because you’re not talking about photography with them when in fact you adore it does not mean that you’re not ‘being yourself’. It’s just natural to adapt yourself to the situation and the person you’re with at the time.

I think the same is true of facebook. On my regular facebook page I have over 200 friends, some of whom I haven’t even spoken to since school. I am sure people only add you to nosey at what you’re up to because I’ve done the same. Now, it’s all very well to say ‘be yourself’ but quite frankly I don’t WANT half these people knowing certain things about me. It’s not because I am ashamed or hiding it, but because certain things just aren’t their business.

Yet there are some things I’d like to talk about on groups, without it showing up on facebook that I’ve joined these groups, so I thought- well why not do what Liz did and just make another page. So I did and I haven’t looked back.

I enjoy both pages for different reasons. The one under my ‘real name’ I can enjoy the frivalous side of facebook- tagging photos, looking at other’s pictures and being light-hearted in general, though not 24/7 as I am still ‘real’ on that page and will ‘vent’ to an extent in my status at times.

On my second facebook page, I can share my blogs and my thoughts on chronic illness that I don’t share on the other. The reason I don’t share it on the other is just because I don’t want to- like I wouldn’t want to go into great depth talking photographry or birds to someone who doesn’t get what I’m on about.

I wouldn’t want everyone on my ‘real name’ facebook page knowing about my suffering because part of the way I deal with it is by keeping it quiet. That’s still ‘being myself’ because it’s a way I have found of coping. If I feel utterly rubbish and awful but choose to push myself and go out, sometimes I end up feeling great by the end of it, because I’m uplifted by my friends and can forget about being ill for a while. But if I was honest and told them how ill I felt, they might be too concerned and too focused on that and then I wouldn’t be able to damp it down and it would spoil things.

Yet I can vent to my ‘spoony friends’ about it and get it off my chest and then go out and be like a ‘normal girl’ who doesn’t have to think about being ill for a while.

So all it is is just embracing different aspects of myself with different people. I am freer to talk with my ‘spoony friends’ (anyone with a chronic illness that is) about the ups and downs of POTS because they can relate. I don’t want to talk in any depth about that (or have that on display in my facebook status or via groups facebook shows me joining) with the 200+ people who I’ve known and collected up from the past. How many people on a facebook page like that are ‘real’ true friends you’d want to know very personal stuff about you anyway? I wouldn’t feel awkward about mentioning something about POTS on that facebook page (once I get official)  but I wouldn’t want to be giving details such as saying that I’d had a dreadful night and couldn’t sleep because my body was shaking and kept having spasms. That’s up to me who I choose to share that with, and because I do want to share things like that, but only with SOME people, people I’ve selected as having the compassion and understanding to ‘get it’ – then I’d only write something like that on my ‘spoony’s’ facebook page.

Some people might not get it. Some people might think I should ‘just be myself and sod anyone else’ on my main page. But I’d like them to just recall the analogy of talking about photography with someone who doesn’t know the terminology. It wouldn’t be a very nice conversation for either party- the one who’s talking wouldn’t get any enthusiasm or understanding from the other person, the one who’s listening would be bored and confused.

That’s all it’s about. Not changing myself or hiding stuff.  We are all like diamonds, multi-faceted. Some of us might choose to show all facets to all people regardless and think that’s ‘being yourself’ and that’s fine, that’s a choice. But in order for ME personally to truly be myself, I want to share certain facets with some people, and certain facets with others, and not all of them at once with everyone. That’s just my choice and who I am.

So Gwen- don’t let anyone tell you you’re not being ‘yourself’ for making a second account! I think if it’s something you feel you want to do (and not everyone will and that’s fine too- there’s no right or wrong, just personal choices) then it’s very healthy! *hugs*