Dealing with other 'Issues' when you also have M.E. (life with M.E).

Alison/Tink; Well hello there our beautiful Blogger Arme (N.B. new readers, we call our followers oue Blogger Arme as you are an army of M.E. related people)

We hope that you are all as comfortable as possible.

As many reading this will know all too well, M.E. can quite literally be excruciating. It takes over all of your life and encompasses everything.

But what then when you have other 'issues' to deal with on top of life with M.E.?

How do you cope?

This is what we will attempt to discuss in this blog discussion, and would love to hear from you al about your experiences too.

We will try to cover a few of the possible issues you may be faced with by discussing some we personally have experienced ourselves.

Personally, I have had a hectic, surreal life.

I often wonder about the people in this world who feel their lives are so boring and wish for just something to happen in their life.

I currently live in my little bedroom, alone and quiet. Yet the life around me still continues to whirl in often terribly hard circumstances.

And my previous life as I may call it, when I was out in the world, was often equally crazy.

What are your circumstances like Jodi??

Jodi/Hbird; At the moment I feel like if I could just get to the point where my M.E. was in the moderate category (or better) and I could live independently, I would have just about nothing to complain about in my own personal life. I feel so lucky about every aspect of my life except for having M.E. I feel lucky to live in Australia, and to have the wonderful family and amazing friends I have, some of the abilities I have, and all the rest of it.

If I were suddenly to recover from M.E. and if there were magically no more need for M.E. activism though, I could think of so many issues that I would like to get involved in campaigning about. Gender equality, discrimination based on sexuality or disability, making all sorts of services more disabled-person friendly, the right to choose non-GMO foods and for society to be more educated about the toll eating processed food takes and the many myths we are told about food that are just based on vested interest groups benefitting, the vital role of nutrition in healing disease, the difference between blindly drugging symptoms and actual healing/prevention of diseases, and so on. So many things! 

In so many areas money and political interests have been allowed to speak louder than real science and the concept of equality. We need lots more real people power and people willing to look into issues more deeply and accurately than our sold-out-long-ago media supports. Knowledge really is power. Knowledge is everything. Knowledge and compassion for others.

So much of what passes for unbiased information now is just marketing. The bigger issue is that so many people aren’t aware of this!

Alison/Tink; Right, which is what a lot of politicians do too these days I feel. There's a film I love. 'Bobby’, by Emilio Estevez. He tells the fictional stories of people in the hotel on the day American politician Robert Kennedy was assassinated. Their stories show the hope people had through the person he was. He believed in equality for all. Now why., in this day and age., aren't there politicians like him. Who believe in every person, and ‘the-every-person’., who fight for every person. Not just the fights that bring popularity or money.

Jodi: We really do seem to not be making the improvements in these areas that we could be. Following politics these days is utterly depressing isn’t it? Popularity and money and power seem to be all it is about – a bit like ‘ME/CFS’ activism! Nothing much if anything is ever achieved but so much work is put into making it LOOK LIKE things are happening. Appearance is everything!

‘CFS’ or ‘ME/CFS’ advocacy that just slaps the name ‘M.E.’ on itself is treated as if it were in fact real M.E. advocacy. The mind boggles.

If it looks good it gets support. Getting the facts right and actually doing good don’t matter it seems. It is so superficial.

The idea that a society should be judged by how it treats those who are vulnerable and powerless is something that I strongly agree with. A ‘survival of the fittest’ type mentality where all we care about are our own interests is not good for society or any of us.

Some media outlets seem to be pushing this agenda so hard though. Trying to make people suspicious or hateful of anyone needing welfare, or of those seeking asylum from unbearable situations in their home countries, or promoting the idea that overweight people are morally deficient in some way. The hatred and ridicule for anyone in the public eye that is the slightest bit imperfect looking is also really unhealthy.

When better-than-average people that are celebrities are compared to horses or said to be ugly because they have put on about the weight of an orange, how are normal people meant to feel about themselves?

Alison/Tink; True that! People should not be measured by how they look, they are their hearts. And a big part of that is how much they care about others, regardless of looks, gender, sexual orientation, class, religion, regardless of illness or lack thereof. We should all realise that we are all in this life together, and stand with one another.

Jodi/Hbird; That is exactly it.

I think it is really important not just to fight for the minority groups you are in or know someone in, but to be at least open to not making things worse for any of these other groups as well.

If you are overweight and experience judgment and discrimination because of it, don’t make racist jokes (or be racist) or be homophobic, for example. Treat others as you would like to be treated I guess. Try to be less judgmental about superficial differences and continually try and imagine yourself in the other person’s shoes.

If all we ever care about and advocate for is the minority group we are in, I think we sort of miss the point and the bigger picture. The goal of just caring about fair treatment and equality for all of us, which would encompass all these minority groups and all of us.

Alison/Tink; I was forwarded something by Ellen Degeneres once that pretty much says it all on this front, she told how it took white people fighting along with black people for the civil rights movement to happen. Now it's going to take the same thing for the rights of LGBT people. We need everyone fighting together for the right thing. Personally, I couldn't agree more on that concept. And not just for LGBT equality, but for all groups in society. 

Jodi/Hbird; Yes I agree!

This is really hard to write without sounding lecturey...and I hate the idea of that. I’ve probably not at all succeeded. It is a hard topic to discuss, but an important one.

Alison/Tink; Ha! We say this in our private emails after writing every blog. You say you feel you 'lecture', which you do not, you write clearly and compassionately, and I say I feel I fail at saying what I mean to say and fail at expressing the extent I care.

Thanks for sharing your views sweetie. It can be a scary thing to do!

Jodi/Hbird; Thanks Tink...it was a bit scary, I feel so out of my depth discussing wider politics but I am also so glad you brought this topic up. I know you have more to say on this topic too.

Alison/Tink; You may not have had such issues to then show empathy Jodi, but you for sure show compassion!

This is probably the only blog so far that I actually do have more experience on than you, and I may just hold on to that as I fear it won’t happen for a while again!!

So, to one particular ‘Issue’.

I live in the UK. One of the foremost countries in the world. Yet I am not essentially proud of being a Brit. Here, amongst wealth and supposed freedom, is poverty, homophobia, racism, sexual inequality, bullying, and much more besides. Sure, we have made strides forward, and these are important ones and should not be ignored. But in my view these are nowhere at all lengthy enough, as people are still hurt, judged, even killed because of their so called 'differences'.

I am Bi-Sexual. Yet even living here I have been confronted with judgement

I feel as if I am ugly inside and out, however untrue this may be, for these insecurities and multiple other reasons, I was bullied at school.
I have experienced brutal grief.
I am seriously ill and predominantly bed ridden. I am thus judged and treated differently.

If all reading this, created a joint list, the list would be immense.

Why???? ,We are all equal. ,We are all people, We are all human, We all feel. Alone, scared, hurt, judged.

Jodi: I am so sorry you have been judged because of your sexuality Tink, I can’t even imagine how confronting and difficult to deal with that must be. It is so unfair to be judged on something that is such an unchangeable part of you and that you were born with.

It seems like in our countries to some extent things are improving and homophobia is lessening, which is great and long overdue, although of course there is still a long way to go. It is shocking too to read about people still being stoned to death or disowned by their families in some countries because of their sexuality. The rights of women in many countries are still non-existent too.

We are all equal, or should be, as you say. There is a great quote by someone I forget the name of about how all our differences are superficial but our ‘sames’ are bone deep. We all want to be accepted and to be listened to, we all want to feel useful and needed, and to love and be loved and for our closest friends and family members to be safe and happy.

People just want to be listened to and treated as if they matter and what they say and think matters..

Alison/Tink: Exactlu, and Isn’t it a shame, because everyone >does< matter!!

That quote is true too. And there is a difference between being uniform than being unified. We are not carbon copies of one another, not a uniform set of similarities. But we should be unified in making this world as Beautiful as we know it can be.

Ah, bless you sweetie. I remember when we first stumbled onto and then discussed the subject of 'issues' in our private emails, it was not only so heartening to find another person who believes in unjudgementalism as much as myself, but that if we do have different beliefs, ways of life etc, they wouldn't affect our relationship.

I have some people I love dearly, but they judge me so much on things that I have no choice over etc. I try all I can not to let that hurt affect things, but it can put such a strain on relationships!

I know you are a little tentative about asking about such personal things, so let me try to guess the things you, and our beautiful readers may wonder about on the subject of sexual orientation as it is oddly called.

As with most things in my life, my M.E. has affected my s/o entirely. I realised I was Bi by the time I was 17 (although I slept with a woman when I was 13, clearly I am slow on the uptake!)

I was ready to 'come out' but my mother became seriously ill, and the time just wasn't right. Then, my heart broke when my beloved moma died. (I won't go into the matter of grief now, as I'm sure we will cover that ‘Issue’ further on here).

For a long time after she died, life was just a battle, and ‘coming out’ was not even an option.

When I then may have felt ready, there was the issue of how I only see people in my bedroom. This may not seem important, unless you realise how intimate bedrooms are. I see one non relative male, whom I adore. He is smart, funny, and lets me flirt (I'm a big natural flirt). And if you know anything about me, you'll know I am very open with compliments. But on giving him the 10th compliment I stop and think 'was that a bit much', and rather selfishly, I just didn't want that caution with the women that I see too. So I stayed with my secret, alone, but very very happy about it.

Then when I was 23, a relative of mine came out as being Gay. He has other hard issues too. I heard so many things that people I know said, and didn't want them to say them to him. So I came out to a few select people with the precise aim of redirecting their views or questions onto me. However it became clear these people may not keep my secret quiet. I also felt, that however untrue it was, that those close to me would feel I had 'chosen' who to tell and who not to tell when they would find out. So I felt I 'had' to come out to everyone, and so I did.

And in all honestly, it has since been one of the hardest battles I have faced. I absolutely believe for the largest part, people eventually are happier out. But for me in my very very specific situation, it just wasn't the case.

If God came and said, ok Alison. If you have a life lived for you, what s/o would you like? I'd without question say I'd love to be Bi. But if he said you will be judged by people you love, and by some people around the world, I think for the people I love, I'd say straight. I really do find that incredibly sad. I'm one of those really annoying people who are so calm all the time. I'm the most placid person, people shout at me and I take it and stay externally peaceful and do not retaliate in any way, shape or form. Yet when I see judgement, be it at people I know, at people I do not know, even in silly soaps, I rip inside. It makes me like The Hulk!

The only differences between a straight, gay or bi person, are the same differences between two straight people, two gay people, two bi people, an Australian lady and an English lady, a black person or a White person, a left handed person or a right handed person, someone who likes sports and someone who likes art. In as much as there are no differences so different that they stop us from simply being human beings. We all have differences about us that make us unique, we are all individuals, but we are all human!

It's also hard having to hide parts of myself still. I have been told by certain relatives that I am not allowed to mention my being bi to my young relatives. Obviously, as I am not the person bringing them up, I will respect their request. However this goes against everything I stand for. Had I been able to be a mother, right from when my child realised there was such a thing as 'couples', by seeing their parents, aunts/uncles, etc, I would tell them that just as a man can love a woman, and vice versa, so a woman can love a woman, and a man love a man. That is it. But they clearly feel very different, and so I have to hide the very thing that makes me, well me, my love. In their words, 'they have only just learnt about "normal" sex, they shouldn't learn about any other kind for a few good years yet.'. Now let me make this clear, I am neither judging them, nor questioning their parenting techniques. But it's not like their asking me to simply not swear around their children, or not to talk about my favourite tv show. They are making me lie about who I am. And that's a very hard thing to do when your relationships are based on words, such as almost all mine are by them being held through texts, emails etc.

Luckily for me, I am not seen as 'Progressive' any longer. Not any more. Am now regarded as having a regular view thank goodness. I have a friend whose 6yr old son knows love is love, and sees his uncle with another man. Another friend whose 6yr old son also knows. A beloved member of my extended family who is in her 60's is raising an 8yr old boy who she has raised always knowing people are different and the same. A close friend has a 2yr old son who has already broached the subject and knows, as much as someone at that age can grasp, that love has no gender. I feel blessed to know these people. To know children are no longer taught bigotry and judgment.

Usually, I see and feel a single act of beauty over a myriad of sadness. However, in this case, many people praising my heart, is counter balanced by a single act of judgment, which I never really get over.

I know these are those out there who are of the opinion that a persons s/o is not who they are, and does not define them. But for me, my love is who I am. For some people it is their job that they feel defines them. You often hear this of Doctors or soldiers for example. But for me, my love is my very essence, and my ability to love anyone, for who they are, is a large part of that. So to have to literally lie about the two people I am in love with when very specifically asked, is unacceptable to me. I personally do not feel there is ever a reason or excuse to lie to children. I feel, as an adult, you should always be able to find ways of telling the truth without being inappropriate, overt or explicit. So for me to be told to lie to two of the people I love most in the world, breaks my heart.

Also, there is a section of my family, one person in particular that use the horrible phrase 'That's so gay' when talking about something they hate, dislike etc. If a persons colour was used in such a way, there would be an outcry. I, for once, spoke of my uncomfortableness at them using it. I had to say this more than one time, but she refuses to take my feelings on board. The last time I asked her not to use it around me she started humming. I asked if her humming meant she hadn't heard me, or had but was ignoring me. She said she had heard but I was being ridiculous and that she was choosing to ignore me and would continue to use it. Can you imagine how this makes me feel? If someone, anyone, told me that something I said makes them shudder and feel judged and that I was being hostile to, even if I didn't understand, I would never use the language or phrase etc from then on. This person has seen elsewhere that I believe this phrase is tantamount to bullying, yet still they use it. Their continuing to do so, shows little care for me. Which, coming from a dear family member, once again, breaks my heart.

A relative once said to me 'Who on earth would choose to be Gay Lesbian or Bi?' To which I replied honestly 'Me'. To which she said 'Well "you" would' as if I am so confident, so sassy, so enjoy taking on the worlds judgements. I just like being able to love someone because of who they are, rather than because of anatomy.

I also remember being young and a beloved relative saying that Gay people had different genes. As if it proved they are 'different'. I knew even at a young age how truly I disagreed, but couldn't find words to say so. Now, I would yes, that may be true in Some cases, but people with green eyes have blue eyes. People with black skin have different genetic makeup than those with white skin. People from Australia have different genes to those from England. So I strongly disagree with her view point, even if I was too young to say so at the time.

I feel the hard part about my situation, is that I can not surround myself at times by like minded people. I know we discussed in our 'Self Worth' blog the issue of confinement. And it's similar here. Usually, using my example here, if you are bi, but certain circles around you are not entirely comfortable with your s/o, you can go to places or social clubs, or an LGBT club, or charities, or even TV fan meetings, where you will find other people who 1, will not judge your s/o, and 2, have sometimes fought the same battles as yourself. For me, i can't do that, so I was glad before my relapse, to do so via social media. I became involved with social media charities, and met online people who  even praised me being able to love anyone, not frown upon it or simply go silent every time the subject comes up. Which is funny actually because I've never been one who would benefit from help groups etc. With my illnesses, or grief, or issues, I've never once thought about finding groups where I could find people going through what I was going through. It just never appealed to me. But with my s/o, when I joined twitter and Facebook, without intending to, or even realising it, I gravitated to the aforementioned profiles/people. And it helped some actually. I was glad for it.

It's funny, I was listening to a book and one of the characters played the word game where they say one word and you say it's partner. They said 'husband' and I answered 'love', not their intended 'wife' match. Marriage to me, is about just that- love. Not gender.

Because to me, Sexual Orientation is not about sex. For most Bi-sexual people, at least from what I have read or seen, their s/o is simply about who you are able to love. Whereas most straight or gay people feel their orientation is about who they are able to be physically attracted to. Which doesn’t make it any less important. Because, who you were born as, is exactly who you were meant to be. That isn’t to say don’t work at being the best version of yourself that you can be, but the ‘you’ that makes up who you are, is inborn. And deserves respect, love, and kindness, and not to be judged, bullied, or suffocated in any way.

 Also on the subject of religion specifically, I find it so terribly sad, when people use religion as their 'reason' for hurting or judging another person. I personally am extremely religious myself, and over the years have looked into various religions. And I can certainly say that I have never found a religion where love wasn't at the centre in one way or another.

CNNhealth’s Dr. Charles Raison said, “‘The stressers that are most likely to make people depressed are things that threaten their image of who they are. Things that are likely to make you lose status, lose power, lose the respect of other people, lose everything you've built, destroy what you think your life is about. Even when the stresser gets fixed, the depression often persists.’ This is often the case when people are judged on any aspect of who they are, for example their s/o, race, colour, class, intelligence, anything. Being judged in any form can completely disassemble your centre, your peace of knowing who you are. As another example, Bullying, however slight, can have life long effects on the sufferer. I saw this graphic recently, says a lot doesn't it! So sad.

 

 

There should be no need to fight for one another. But the sad reality is, that we desperately need more people to indeed stand up and make the difference.

Jodi , you are so evidently one of these rare people. You not only fight your battles, and the same battles for others- but you fight other peoples different battles too.

This is something I too have done my whole life and whole heartedly believe in doing so. I believe in championing every person.

Everyone deserves to know they are worthwhile, valued, loved. They do not deserve to be negatively judged.

We should all do this.

Stand hand in hand.

One army.

One heart.

There is a quote "Stand up for what you believe in, even if that means standing up alone" Let us stand with you. You are not alone with us.

We., all of us., have compassion within us.

Use it wisely and freely.

Why we are doing a blog about issues 1. Because we believe in you all, and 2, as this quote reads : "We write because we believe the human spirit cannot be tamed and should not be trained." - Nikki Giovanni

I heard a line in a book, 'Illness can make family of strangers'. This is so true. As it is of experience. Having been though, or currently going through a similar experience as someone else, forges a bond no-one else can understand.

I also separately heard "Community is born through that struggle to push forward." this is true of you, our beautiful Blogger Arme. That for which we truly thank you all for. We adore our community!!

In an interview that I've mentioned in a previous blog that I did about True Beauty, I spoke of what I call 'Turning your Pain into Passion'.

I truly believe every single experience that happens to us is worthwhile. But to use these experiences to help others, makes them somehow seem or feel more so.

Since then, I have been sent this picture, both cute and true.

 

 

And the other topic of Issues that I am well acquainted with, is Grief.

As I have mentioned in previous blog posts, my beloved mother died when I was 19.

To me, she was the closest person I had ever known. She was my sole carer, and we had experienced some of the most intimate things two people can share.

When the person who you are closest to, your 'go to person' is no longer here, you can feel so lost, there are no words.

So how do these and my other 'issues' affect my severe M.E.? For me, mainly in two ways. Firstly, the more things I have in my head, the more brain power is sapped, and therefore my abilities, be they physical or mental, are affected. Also, for me, I personally need a lot of sleep. And when I have things in my head, it keeps me from sleeping.

There was a neat little discussion Jodi kindly showed me that both she and I have watched called 'Bully For You' on the show 'Big Ideas' that you may want to watch that fits in nicely with this blog discussion. You can watch, or download either the video or audio of it here.  
http://www.abc.net.au/tv/bigideas/ stories/2012/07/30/3555187.htm

It can be hard talking about such issues at the best of times, let alone when you are so ill and already wary of sounding like you are moaning or struggling to what family or friends have remained close to you.

If any of you reading this have extra issues to deal with, please email me (Alison/Tink) if you want/need to talk.

So for now our beautiful Blogger Arme., know that you are not alone with us. And we will never judge you.

Take care of your hearts and health, and of one another if you so are able.

Best Wishes, Much Love and Blessings

The Tinkerbelle and Hummingbird M.E. Blog x x

'Every mans life concerns every other man'. Bulletproof monk

"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
 ~Attributed to Plato, T.H. Thompson and John Watson

'Death leaves a heartache no one can heal, love leaves a memory no one can steal.' Generation gap

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