Here. 5.15

This hideous disease takes so much. If it takes your hope, I'll hope for you. If you feel it takes your smile, let me tell you, i see the smile of your heart. If it takes your family or friends, i am here. If it takes your freedom, ill fly you in my dreams. I will tell your stories, our stories. I can't make anything easier, i can't stop disease or suffering or endless hurt or fears for your short future. But i can sit with you in it all, not only i can,, , i do and i will. Im too ill now. Too ill to be here regularly or properly, i shouldn't be here to post this but hey. But none of that stops me loving you, holding your failing bodies in my heart, seeing you superior souls everywhere in life, and being deeply grateful for you all. This is so hard. And you are all so wonderful. Alison/tink God bless X x

Quick poll. (life with M.E., poll, M.E vs M.S.)

Hi y'all. Quick poll. It's a 4 parter. Please if you're able, answer I Do, or I Didn't or such. No need to go to more effort than you can manage. If you would rather not comment on the quick and easy to use comment stream below, please feel free to email me (Alison/tink) contactAlisonLouisebell@gmaill.com Or text or voicemail me on 07971151438 Internationally +447971151438 Many many thanks for your participation. Best Wishes, Much Love and Blessings Alison/Tink On behalf of The Tinkerbelle and Hummingbird M.E. Blog x x 1. Who knows stress, even minor stress, can cause a relapse in M.S.? 2. Who knows stress, even minor stress, can cause a relapse in M.E.? 3. Who knows the stress it takes to cause a relapse in M.E. is far less than the level of stress it can take to cause a relapse in M.S.? 4. Who knows that Any form of relapse in M.E. can leave your baseline permanently lower?

A little big question, your input (life with M.E.)

Hi our dear blogger arme.

We have a little, but big, question for you all today.

What do you do, when you are going through something that has broken your heart, and you are stuck in your house or in your bed, all alone, with nothing to help you, what do you do to cope?

We would really appreciate your thoughts on this, ,anonymously and/or confidentially if it's easier, whether it be on our comment stream below, or via
*email at contactalisonLouisebell@gmail.com
* text/voicemail/whatsapp 07971151438 or internationally +447971151438 
* or kik alisonLouisebell

Our love to every single one of you, because we know you will all go through/will have gone through this at some point.
We are here for you all!

Best Wishes, Much Love and Blessings

Jodi/Hbird and Alison/Tink

Aka
The Tinkerbelle and Hummingbird M.E. Blog x x

Depression and Suicide with M.E. (life with M.E.)

Full blog discussion.
Alison/Tink; Death by M.E. is not such a rarity as people think. M.E. also lessens life expectancy, yet there is another avenue that raises the death rate. Suicide.

This year, National Suicide Prevention Week is September 8 -14 2013, and September 10th 2013 is world suicide prevention day.

Given that statistically, "In the developing world, Suicide now takes more lives than war, murder and natural disasters combined", [Reference Twloha, reference link,
http://twloha.com/news/newsweek-covers-suicide-epidemic ] how much harder can life be then, if you are ill too.

When I saw our blog stats recently, it did not surprise me that our little blog about Suicide Awareness 2012 was our highest viewed non-discussion post, and by far. For life with M.E., for some, can be literally unbearable.

I am about to admit something here to you, our valued readers, that I have only broached with two people- one a friend who confided in me that she was considering suicide, and the other being Jodi when we broached the possibility of doing a blog about this subject.

For a long time, I considered suicide. Literally, for a few years solid, I would think about it, plan it, think about all the little ins and outs, every single day. Not because every day I was considering doing it that actual day, but because it was almost a form of hope for me, that this world of agony could stop, for myself, and to me, more importantly for my family.

I would wonder how my family could possibly love me if they wanted my life to continue like that.

But things slowly eased.
When I say slowly, I mean so slowly that I didn't see it was happening for a good 3 or 4 years.

Jodi: I'm so glad you're no longer in quite such a desperate situation Alison and no longer thinking actively of suicide in any way. I hope your being so brave in talking about your personal history with this issue will help other patients that have felt the same way. Or that feel that way now. ((((Alison)))))

I have not been suicidal myself, but I have spoken to many very ill people that are or have been. When one is so so desperately ill and enduring so much suffering each day for years on end, sometimes all you can think is 'I need this to stop.' What we all actually want, suicidal or not, when we have severe M.E. is to get well, of course. Or at least a bit more well. That's the option and choice we are really desperate for, to start LIVING again and to stop existing in what for many severe M.E. patients is best described as a living death.

M.E. patients that are suicidal are not feeling this way due to depression and the lack of interest in life that is such a big part of it. What is unbearable is wanting so much to live and physically not being able to. It is quite a different issue.

This hellish state that may lead to suicidal thoughts is often made worse by lack of family or other needed supports. That level of the suffering at least, some people have a lot of control over right now. I'm talking about the friends and family of those with severe M.E.

If you are reading this and you are close to someone with M.E. I would urge you to please check out the M.E. facts on the HFME website. You can make a significant difference to the life of the person you know with M.E. just by doing a little high-quality reading and gaining a bit of understanding. The difference you make could be enormous. Even life-saving.
You might like to start with: So you know someone with M.E.? It is a very non-scary or overwhelming place to start reading I promise!

http://www.hfme.org/soyouknowsomeonewithme.htm

Alison: You are absolutely right about what leads an M.E. sufferer to suicidal ideations. There is a very clear and vital difference between depression in a healthy person, depression in an ill person, and causational depression in either. Or very separately, too much suffering without any depression.

I am not saying I would never consider it again, because I simply do not know what my future may bring. But I do now know that things can change, for a lucky few. That's probably one of the hardest things with this illness, not knowing if you are one of these lucky ones whose lives can with time become slightly more bearable, in whatever way, that living is just about conceivable, or if you are one for that life, when it gets to the worst it can get, will never ease.

What I can say, is that myself and Jodi are always here for you, for anything. These are no words for comfort or well-meaningness, but genuine offers.

The sole reason I have never spoken about my past struggles, is absolutely not about being ashamed, or such like. It very much stems from the fact that I was sent to psychologists and psychiatrists by doctors not believing I was physically ill because they at that time ignorantly didn't know how to test for the testable/diagnosable/measurable illness we have and didn't bother testing me for others I also have. I never wanted to feed their misconceived notion that my ill health, my M.E., was predicated on any mental state, because it wasn't. I wasn't depressed, didn't have anxiety, and had no mental health issues. The suicidal ideation came much further into my life purely and simply as a consequence from such extremes of physical suffering and an extremely limited life. And so any emotions, feelings or thoughts that I have ever had since that were/are not completely happy clappy, which lets be clear are completely healthy in any life, I have kept to myself. I wish it were different sometimes.

Jodi: It makes it an even more complicated issue doesn't it Alison. (Rhetorical question!)

Add to that too the fact that those most in need of someone impersonal to vent to or other types of talking therapies are often in such a terrible state because they are too ill to speak or be spoken to or spend time in company in the first place! They are also those most in need of and most physically unable to even talk to friends to try and ease the pressure. It is just such an awful situation. When you're at your most ill and in need of support or a few friendly words even, if when you are least able to get them.

Another issue is that mood problems can be exacerbated by physical factors related to M.E. or secondary effects of M.E. This can range from hypoglycaemia or eating a high sugar diet causing anxiety and a racing heartbeat to actual symptoms of depression caused by vitamin or fatty acid deficiencies. When these issues occur alongside suicidal ideation it can understandably confuse the issue further for patients. It is absolutely not the total answer for M.E. patients considering suicide but I would strongly urge patients - if they can - to investigate treating any physical causes of mood issues etc. before assuming everything is directly related to their living situation being very difficult for anyone to cope with. It may well be a little of both problems and not all one or the other. You may like to read the paper on treating the causes of physical mental health issues on my new health website for more information on this. (Or not!)

http://www.hhhummingbirds.com/mental-health-and-nutrition

Alison:Thanks for that info Jodi. Great information there!!

I know a lot of people who say suicide is a sin, and the most selfish thing a person could ever do, because of the people left behind. But when you are in that place, where the world is so excruciating, so dark, that you could not possibly see a reason to fight to stay, you then believe your family and friends would be better off without you here, that they would be free. But this is not true. You are so meaningful to this world, even if you can not see it.

We see you, your worth and beauty.
If it is at all possible, please don't give up.

Jodi: Things can get better even when it is the last thing that seems like it will happen. It happened to me. Family members can, sometimes, over time start treating you a lot better or even very well. (When their mistreatment comes from a lack of understanding they can be educated if you are lucky. It can really turn around. But mistreatment from bullying motives is very different of course.) Or you may make a new good friend that treats you well and adds a lot to your life. Or your health may very slowly start improving as the years pass. Even if all these things wont happen to everyone I feel we all need to hold onto an unbreakable hope that we will all be the lucky ones. Where there is life there has to be hope!

Know that you are not alone and even if you feel as weak as a kitten right now, you are so strong to have lived through as much as you have. Please never give up.
Alison/Tink; So, as we conclude this blog discussion, please know that the subject is never closed, that you can contact us to chat about this, or anything else, any time.

My (Alison/Tink) email is contactalisonlouisebell@gmailcom and mobile for text or voicemail is 07971151438 or internationally +447971151438

You matter. We individually empathise and sympathise with your suffering. We are here to listen.

If it is at all possible, please don't take your life through suicide.

Best Wishes, Much Love and Blessings

The Tinkerbelle and Hummingbird M.E. Blog x x

Blue Hair, Tattoos and Self Expression (life with M.E.)

Alison/Tink; Hello our blogger arme!
A cute little blog discussion this time, albeit coming from a serious origin.

So many of us, quite rightly, feel like our bodies are out of control. As if they take charge and we are left rendered completely choice-less.

A lot of us can not choose what type of clothes we wear, how we have our hair- (if we can have hair at all), what jewellery or makeup we wear, and so on.

So much of human expression, and personality, is embodied in our clothes choices, hair styles, body language and physicality etc. Yet for a lot of us with M.E., these seemingly simple parts of life, are not in our hands.

Sometimes, it can be pretty important, sane making, and even empowering, to take some control back, when you can.

Jodi/Hbird:  That is so true. It can mean so much and help so much, even though they may seem like small and superficial things to do.

I said recently to a fellow ill person that has tattoos to help express the pain and powerlessness of illness that for me dyeing my hair recently was all I could do at that time, and my only alternative to just screaming at the top of my lungs in frustration for days and days until my voice was gone. That isn't exactly what I mean and feel I think but there is a big chunk of truth there too. It's very hard to put such strong feelings and pain into words, especially when you are so ill.

Alison/Tink: Isn't it just! I think many reading this will concur, sadly!

Here are a few examples of our personal experiences in this area.

I have two tattoos (so far). I had them done when I was well enough to cope with the physical fall out afterwards.

I have a 'friend' who is a tattooist who came to my bedroom and did them here, in a more controlled manner. I am such a girly girl so they are small and dainty so it wasn't too bad going. Both of them are more psychological ones, than aesthetic ones, and they literally help me every day. I would like two more, but will have to wait I think. Which is frustrating but probably for the best.

I know you have a love and affection for hair dye Jodi...

Jodi/Hbird; Oh I really do Tink, a big love!

I am too fickle for tattoos I think, what I love about body modification type things is the constant changing of them and always thinking up new things to do that will be fun. I worry I would change my mind about a tattoo design I picked now, years later. But maybe one day I'll feel confident that I know or want something for sure and for always as you have and take that tattoo plunge!

I'm so glad you get so much out of yours Alison, and that you were able to have them at home, that is so great.

For now, what I love is hair dye!

I have been too ill to do anything with my hair at all really for about a decade. A 15 second 'styling' job to get it out of my face is about it (combing optional!), plus 2 minute self haircuts occasionally! (I have to admit, usually I really enjoy doing those...it may well be the only thing I'd miss about being ill, if I were to suddenly become 100% healthy tomorrow. Cutting my own hair really quickly. The sound it makes as you quickly cut into a big hank of hair and chop it off, I love it! But I digress!)

Making my hair all pretty colours was my way of celebrating the fact that finally my health is slowly improving and that maybe soon my life will be about more than just basic survival...and have a bit more fun and life and colour in it.

Life has been monotone for so long.

Once I was finally well enough to do it, it became something I just had to do as soon as I could. It was both a celebration of being well enough to do such things again finally but also, a way of venting some of the pain and powerlessness of years of stupendously severe illness.

Being very ill means boring clothes and hair (and even music and room decorations and other things) and not being able to do so many things that make up who you are. This felt like a small way of reclaiming my non-ill personality a bit too. It made me feel more myself than I have in years. It is a small thing but to me, symbolic and powerful.

Alison/Tink; That's such a good point Jodi, that we often need to express, or simply be able to find, the person inside of us, the one who was born, not forged through illness. And then to blossom it too.

Jodi/Hbird; It doesn't help me cope with every day that much, it is all still really hard each day...but now and then when I see a glimpse of blue or another colour in my hair's reflection it makes me smile...as does planning which combinations of colours I'll do next.

Colourful hair dyes have come so far since I last did them over 10 years ago I'm so happy to see! The colour used to fade as soon as you looked at it. Even when hair was freshly dyed back then it was nowhere near as VIBRANT and deeply chromatic as any of the Special Effects brand dyes I use are. I LOVE the new dye technology! It is so weird to sometimes be annoyed the blue I have just put in isn't fading at all even after lots of washes (I really am liking them a lot more when they fade to pastels, you see).

I sometimes wish I could disappear it instead of just minimising it when I (occasionally) see people that aren't close family. I know it looks in way like attention seeking, and the idea I am doing that makes me self conscious and embarrassed, but actually it is all for me and I would be most happy if people didn't mention or comment on it to me. (Online comments are fine though and nobody needs to be careful at all about mentioning it to me or anything like that, but it is just different in person!)

Alison/Tink; And of course there are people who think you must be 'well' or 'better' to do things like these. Obviously you have to be able to do them, but it is always somewhat deflating to me how people fail to realise how ill one can be and do something like these. Does that make sense?

Jodi/Hbird; It does to me Tink!

Alison/Tink; I always worry that people will think I'm far healthier and able than I realistically am just because I have hair now, or a top that shows my figure differently. It's such a shame to gain these vital personification type things, yet worry about almost hiding them for fear of others wrong opinions.

Jodi/Hbird; Yes, I think people see you doing things not essential for survival and think 'Oh well then, you must have all the basic tasks of life well in hand if you can do extras!'

But at a certain point after years of struggle, sometimes self expression and doing a few things that are NOT to do with basic survival is what you have to do TO survive. To help you get through the difficult days. (When you are beyond a certain point of illness severity all the days are difficult ones, although the levels do vary.)

Also, often these small changes in our hair or wardrobe indicate only very, very small improvements in our ability to do things, and these improvements may well be gone by the time people get to see the changes in our appearance. So yes, appearances can be a quite misleading in this respect, I agree. It is a bit frustrating that a small but wonderful good thing can have this not-so-positive side as well.

If anyone is interested I'd recommend going colourful, in a big way or even only in a small section of hair, to anyone whose job allows it... and especially anyone that is ill or for other reasons just needs or wants a bit of fun and excessive colourfulness. More beautiful and unexpected colour in the world is always a good thing!

Happy dyeing and tattooing everyone!

Ps from Jodi on the issue of chemical sensitivities: I have significant issues with chemical sensitivities and I got around these by only bleaching and dyeing my hair starting about an inch from the roots - so none of the dyes or bleaches touch the scalp and the skin at all. The rest of my hair is natural brown coloured. I think it looks better not going all the way to the roots, personally. Plus doing it this way avoids all regrowth issues and means I only will have to re-bleach every 4 - 6 months or more. Pretty low maintenance, which is what I was after. If you wrap the hair in foil once bleach is applied the smell is very minimal. If I do it right I have no reaction to any of the products at all.

If anyone would like more dyeing tips and info on colour and brand choice you can check out my Special Effects dye review on Amazon, and also my gorgeous Fantastical hair colours I love board on Pinterest.

Also, if you are thinking about a tattoo you may want to read this article on avoiding toxic dyes used by some tattooists or this article. Researching all the dyes and things you will have tattooed onto your skin or put on your hair is up to you and essential!

Alison/Tink; I asked my tattooist what was in the dye, she had no idea! Said most long term tattoo artists don't! I'm so tempted to drop a joke comparison about ignorant doctors but I'll leave this doctor free, for our sanity :-)

Jodi/Hbird; Pps. I also just wanted to say, yes, for many very ill people doing any dyeing and tattooing will just not be possible at this time. This post should in no way be taken to mean we think that everyone with M.E. will have these options. We know they do not, and indeed we have only managed them in particular ways/recently/with difficulty, ourselves. We wish everyone reading this blog the improvement in your health in the future that will let you do some of these things maybe, or any of the other things you are dying to do!

Alison/Tink; You beat me to it!! I was going to add exactly that point. Yes, you have to be able to do these things, and/or cope with the potential fallout, not many severe M.E.ites have this option. But if you possibly can, self expression of any sort, can be pretty important. Hence this post. But we both absolutely know, from medical knowledge and experience, this is often not an option.

 

 

 
Back to point, I love this picture of you Jodi, one of my favourites actually! I think your blue hair expresses as much as your smile here. Thank you so much for including it!!

We would love to hear about your various ways of self expression, either below on the easy comment stream, or via email to my usual address contactalisonLouisebell@gmail.com

We love hearing from you.

That's all for this entry folks,

We hope you enjoyed the visit!

Best wishes, Much love and Blessings

The Tinkerbelle and Hummingbird M.E. Blog x x

©TheTinkerbelle+HummingbirdM.E.Blog 

 

 

Music, Art and Poetry with M.E. (life with M.E.)

 

Hello Our Beautiful Blogger Arme.

Welcome to our sixth official blog discussion everyone.

We hope you are as comfortable as possible right now

For so many of us, there are few places for us to turn. To turn to for many reasons, be it need for understanding, escape from circumstance, etc etc.

As we have spoken about in previous blog posts, most of us are not able to do the regular 'self-soothing' acts that most regular people can. We can often not ring a friend for an understanding chat, pound frustration out in a jog, eat a tub of comforting ice-cream and so on.

Music, is one thing I know some of us turn to, including myself.

Music has that incomprehensible way of empathising with intimate feelings, even if the song is about something completely different to the problem we are facing at said time.

When I began taking a particular medication, whilst trying to find an appropriate dosage, I would have severe reactions to the higher dose. These reactions occur during my regular life, but would happen all together and severely after taking aforementioned high dosage.

I would fit partially, have partial paralysis, loose vision, loose hearing, vomit, have violent diarrhea, have clawed hands, have hyperventilation, amongst others etc.

Having all this at once, and severely, was such a shock for my body each time. When bodies go through things like this, they go back to that old 'fight or flight' notion. But this is not actually always best for ones body. The best thing is to relax, let the symptoms happen, so that when they finish, you can recover quicker. If you do not relax when your body goes out of control and takes a heck of a longer time to recover.

Jodi: That is all so true Alison. Stopping yourself from getting too worked up is so important when you're extra ill, but of course it is very difficult too! It is a skill that takes a while to learn as well.

Alison: Absolutely. Relaxing when your body is out of control is so much easier said than done. But after lots of attempts, I did get better at it.

One reason for this, is that I used music. I would sing quiet songs in my head. Concentrating on them, trying to get my havoc breathing into the simple rhythm of the music. A form of meditation in a way I guess.

Please don't get me wrong here, I in no way believe simply relaxing can abate all M.E. symptoms. What I mean is that if you panic on top of symptoms, they take even longer to recover from. It is here where music can help.

This is a practice that I have kept in place throughout my life ever since. No matter the symptom or experience, I find it can help.

For me, I mostly use praise songs nowadays. And at night I also listen to a very gentle songs to settle me down, such as Norah Jones.

Jodi: I've used music and relaxation/meditation CDs to get through very difficult times as well, it can help a lot. It can help in ways that you just can't get from other things, if you choose the right music!

Repeating a mantra to yourself over and over and telling yourself all you have to do for now is focus on repeating your mantra and breathing slowly can also help. You have to keep reminding yourself that everything you have to worry about can wait.

Alison: People can also communicate through mediums such as music and poetry in a way they can not simply through words. And this is such an important thing, for people whose voices are often laboured, lost or outweighed, to feel they can actually manifest their feelings, thoughts or beliefs. It can sometimes even mean the difference between a life and an existence, which should never be mistaken for anything other than incredibly vital.

Jodi: Well said Alison, I completely agree with all of that.

Alison: Thanks Jodi!

I also love to sing. I am terrible at it but who cares, I don't have to listen!

Jodi: Me too, Alison, sometimes. By which I mean I sometimes like to sing, but that I am absolutely always terrible at it!

Alison: I am not well enough to sing a lot, or certainly sing full throttle, and I have so much scaring and also muscle degeneration in my throat that the quality of my voice and vocal range is even worse. But the feeling I get when singing, it's hard to describe, it's like it completes a part of me, that simple expression can not usually touch.

I also personally write poetry. I keep it a secret in my life, but I have mentioned it in a previous blog discussion because I feel so passionately that you all know that you are not alone.

Basically, I had had the feeling all of my life that I should write. But when I would try, my ego would be so ashamed at the lack of quality, that I would throw it away.

And then my mother died. And I realised how vain I was being. That my poetry didn't have to be beautiful, or change the world. It simply had to serve a purpose to me. As the saying goes 'Screw the results, Relish the process'. And so I have written ever since.

Jodi: Painting to me is like that too. Sometimes it is about the end result and sometimes it is the process you get more out of and that is actually the main focus of doing it. There is a lot going on inside our brains when we create things and express ourselves in these ways, absolutely.

Alison: Your paintings that I have seen are so beautiful!!

I used to draw, and also do watercolour painting. But since my severe relapse I've just not been able. One doesn't have to do elaborate things, even colouring in simple children's colouring books can be soothing.

I write more honestly than I am elsewhere in my life. I write the things that I can not say aloud, or even admit to myself.  I write about anything and everything, first person or abstractly. My current life, my imagined life, experiences of my own or my families, or things that I see happening on the news or even in TV shows.

Getting my thoughts out of my head into a poem can stop continuously rotating thought sometimes. We all know what it is like laying for hours, with something difficult or stressful on our minds, yet we have so little way of externalizing them. Emailing a friend, writing in one of Jodi's wonderful yahoo groups, are great ways, but sometimes it helps to write poetry too. You know that phrase about putting a thought in a box, locking it, and putting it the back of your mind? I find that pretty impossible. So poetry helps me with this sometimes.

I think maybe some of the things I write about are my way of dealing with things, or processing my thoughts and emotions.

Jodi: It sounds like an empowering, and also I hope enjoyable experience Alison. (And thanks for your nice painting comments previously!) Expressing yourself in other ways when you are so limited in speech etc. is vital when you are severely ill, if it is at all possible.

To relax I really like Mozart or other very mellow classical music, or good quality non-verbal world music (such as 'Sacred World' or 'Journey into Light') or meditation music. Weeding out all the 'marching to war, super-loud and full on classical tracks can be hard though!

When I am full of frustration at my situation or the situation facing a M.E. patient friend of mine or the terrible plight of M.E. patients generally I like PJ Harvey, Camille, The Pixies, The Breeders, Beck, The Smiths and lots more I can’t think of at the moment and most especially the very raw and emotional bits of some songs by these artists. It soon changes my mood for the better if not actually making me smile. I wish I were well enough to listen to 'fast' music like this a lot more often. It is annoying having your illness dictate to you what music you can enjoy most of the time, along with so many other things. I'd listen to lots more PJ etc. if I had free reign.

Alison; Thanks sweetie. I wouldn't so much so much say empowering, more word and thought purging, does that sound gross?! :-P

Absolutely agree, having even your music, film choices dictated by your M.E. is beyond frustrating to say the least!

Jodi; This week I have just discovered a book of poetry called 'Love is a Dog From Hell' by Charles Bukowski. It was written right around the year I was born and is very raw in parts. I'm not a huge reading poetry fan but I'm absolutely loving it. Last week I listed to a free recording of the whole 'The Raven'poem by Edgar Allen Poe too. It was very well done, and almost as good as 'The Simpsons' version! *smile* I recommend downloading it!

Alison: Thank goodness for ipods/ipads/media tablets/computers, where you can literally have thousands of songs, poems and artwork at your fingertips!

We would love to hear via the simple comment stream below what roles things like Music, Art and Poetry play in your lives, and what pieces of Music/Art/Poems helps you. We love interacting with you all.

May I take this moment to re-request that if you wish to remain anonymous, which is perfectly understandable, can you leave a way for us to establish who is who, especially for competitions so we can identify you individually and announce who the winner is easier. You can use pseudonyms, codes, whatever you like. And remember I (Alison) reply to every comment made, except competitions as I do not feel it is fair, so check back a week or so after commenting. Your comments help other readers know they are not alone, and help us know if our posts help at all etc.

Thank you for reading this blog discussion, and simply for being you.

So for now., we hope you have as comfortable day as you can., knowing we admire you all.

Best Wishes, Much Love and Blessings,

The Tinkerbelle and Hummingbird M.E. Blog x x

A Poem from the book Jodi referenced above;

'The writing of some

men
is like a vast bridge
that carries you
over
the many things
that claw and tear.'
The Wine of Forever

― Charles Bukowski, Love is a Dog from Hell

Quotes;

'"Music says it's OK to be human, OK to ask questions, OK to feel things deeply."  Twloha

"Music expresses that which cannot be said and on which it is impossible to be silent." - Victor Hugo

"Music acts like a magic key, to which the most tightly closed heart opens." Maria von Trapp

'Where words fail, music speaks.' Hans Christian Andersen

'Music expresses that which cannot be put into words and cannot remain silent'. Victor Hugo

'Music is the universal language of mankind.' Henry Wadsworth Longfellow

'Music in the soul can be heard by the universe.' Lao Tzu

'Love is a friendship set to music.' Joseph Campbell

'Music is what life sounds like. '- Eric Olson

'Sometimes the break in your heart is like the hole in the flute. Sometimes it's the place where the music comes through." - Andrea Gibson

©TheTinkerbelle+HummingbirdM.E.Blog

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

©TheTinkerbelle+HummingbirdM.E.Blog

Revolutionary Earplugs (life with M.E.)

Hi all!!

Different little blog post today.

I know most of us suffer with an inability to cope with noise.

I have used earplugs during the night for too many years to count.

Until now, the main ones sold were orange foam ones. These are good but loosen everytime I move my jaw.

There are now a new, revolutionary type that I have found wonderful. Which also are easier on the eczema inside of my ears.

They are like a cross between bluetack and putty, and look like blue throat lozenges. They come in packs of two pairs, so six in all. And are around £3 to £4 per pack here.

They are called Bioears silicone earslugs and I highly recommend them.

They are widely available in the UK, tho I am not sure around the world, but would be happy to look into it for anyone if you tell me where in the world you bless with your presence.

You can get them in shops like Boots, Superdrug, Chemists, and online via amazon and ebay etc.

Here are some links to help those interested--

Amazon UK
http://www.amazon.co.uk/gp/product/B0013HGG0C/ref=s9_simh_gw_p121_d0_g121_i1?pf_rd_m=A3P5ROKL5A1OLE&pf_rd_s=center-2&pf_rd_r=1W0NXXTQHX2F1WJRBKK4&pf_rd_t=101&pf_rd_p=467128533&pf_rd_i=468294

Ebay
http://www.ebay.co.uk/sch/i.html?_nkw=bioears%20silicone%20earplugs&_sop=15

I have attached a picture of the box as you buy them, and a picture of one next to a foam earplug as comparison.

I do hope this may help some of you a little.
Please feel free to contact me for any more info on this, or anything else.
contactalisonlouisebell@gmail.com

Many thanks to the ever beautiful Buttercup Teddy for helping me find these earplugs!

So for now lovelies,
Best Wishes, Much Love and Blessings

Alison., on behalf of.,

The Tinkerbelle and Hummingbird M.E. Blog x x

Pets With M.E. ; Blog Discussion 3

Alison/TINK: Welcome our beautiful Blogger Arme to out 3rd official discussion.

We hope that you are as comfortable as can be

So many of us M.E. sufferers, especially those of us who are house bound, often face intense isolation.

Too much human contact can cause dramatic increases in our symptomology.

So many turn to, and rely on, pets for companionship and friendship. The quote 'Pets devour the loneliness. They give us purpose, responsibility, a reason for getting up in the morning and a reason to look to the future' is more apt for ill people than words can often manifest.

For me personally, I am too ill for a pet. But I can very much understand the unmatchable value that a pet can bring.

I spend almost all of my time on my own. It is the only way I can 'cope' with life.

But I know of many people with various severe illnesses who rely on their pets almost more than they rely on human contact.

What role do your pets play in your life and health Jodi?

Jodi/HBIRD: For me and for many other people that have M.E. (and other serious diseases) our pets play an important role in keeping us going and getting us through the days.

I have two cats; Geesha and Ziggy. I love them both to bits.

My cats have kept me company for so many thousands of hours that I would otherwise have spent completely alone. Being alone but having a cat or two for company is so much nicer than just being completely alone. To me it really makes a difference.

M.E. makes you so isolated, because even a little bit of time spent in the company of another person and having simple conversation can be too much to cope with without relapse very often. Severe M.E. means spending almost all of your time with little human company or contact.

My two cats also make me laugh out loud at least once a day and often a lot more. They are such funny little things and always up to something new.

Alison/Tink; Want to share a humorous example sweetie, share their joy?

Jodi/Hbird; You know I do!

One day my cat Geesha was running around my dayroom chasing something. It seemed to get away from her and she started turning left and right to try and find it. Looking everywhere. Then she turned around one more time and I saw the most enormous spider stuck to her side, holding on for dear life! It was hiding from her there. Geesha had no idea and kept turning around looking for the thing, looking more and more confused at where it could have got to. I laughed so hard it hurt!

(Then I quickly got her outside so she could shake off the spider out there of course!)

I could go on and on with dozens of funny anecdotes, but I'll spare you that. I realise they may only be funny to me!

       

Daily laughs for someone with M.E.are such a special thing, and so important. With all the grim realities we face who needs to laugh more than us!

Alison/TINK: I have a most treasured 'friend' who suffers terribly from a horrible brain illness. She gets extremely dizzy regularly. Due to this she remains alone with her wonderful husband most of her time. The only ventures out were with him, and they were short and controlled. Then she got her beloved dog. With her dog by her side, my friend found the confidence to go on short walls, knowing that if she had a bad turn, she was not alone. I know that this is an example of many M.E. sufferers too who would otherwise be unable to take short walks alone.

However for those of us who are house bound, even having a pet can be too much. I could not cope with their movement or noise.

Jodi/HBIRD: Yes, not everyone with M.E. will be well enough to have a pet, sadly. Having a pet and not being well enough to see it much can also be terrible.

Dogs are difficult because they need walking -something impossible for most M.E. patients. Cats are easier than dogs and there are also birds and mice and rats to consider, depending on your own illness level and which animals you like and dislike. (Rats aren't for everyone!)

I'm not sure about fish. The noise from the tropical fish filters I find absolutely excruciating for one thing and also, although they are low maintenance they are also not very interactive.

Alison/Tink; I don't know, I used to have a Goldfish when I was younger (so no noisy filter required thank goodness) She was amazing. What they say about fish having a 2 second memory is untrue, she knew where we fed her. She would also do this uber cool, totally weird thing of keeping her mouth closed when you'd talk to her but open and bub it when you'd need an answer!

A few years ago I read an article about an ill lady who found solace and inspiration in a snail of all things. She also learnt how to be peaceful and still by watching the general way the quiet snail lived its gentle life. We can learn so much from animals.

Jodi/Hbird; So true – and I also stand corrected about the fun of having fish for pets! Your fish sounds very special and funny! They are just so beautiful too. I miss the huge Koi and Black-eyed Moors I used to have in an outside pond.

My cats bring me lots of laughs and smiles but they also make me a bit more ill at times for sure. There will probably always be some sort of physical cost to having a cat or two if you have M.E.

Mine will sometimes choose the day I have a cold fever and am trying to pass out (so I can wake up again for the day and 'get a better offer' with my health) to decide to race through the cat flap with a bang 20 times in about as many minutes. Or they'll decide that they would like to be patted and played with at 4 am, and so will sit at my gate and howl at me until I get up -despite the fact this tactic has never once worked for them! These sorts of things can be maddening and when it makes me very severely ill and in 10/10 agony it can make me dream for a few seconds of giving them a Homer Simpson style strangle!

My cat Ziggy also recently knocked over and smashed six eggs I had painstakingly painted for an upcoming exhibition, and that I then had to repaint with only 2 weeks to do them in, the little....lovely cat!

There is also cat hair over EVERYTHING, all the time! (Next time I am buying cats that match my carpet colour, or vice versa!)

Overall I get far more from them than I lose of course, and mostly they are well behaved and the cost of having them on my health is quite small. There are also financial costs too which must be considered, with almost all of us that have M.E. living in poverty or somewhere close to it.

Alison/TINK: They can be more valuable than most people realise on first thought

When my beautiful 'friends' dog died last year, I remember saying to her how I understand the loss of having someone who looks at you without knowing your life. I hate the eyes people unintentionally look at me with nowadays. They look at me with a combination of pity, unrealized judgement, and without looking at me as a person if that makes sense. Pets don't see greasy hair or a person lying down. To have a pet who gives you uncomplicated love, love without knowing your life-- just knowing 'you', can be invaluable.

Jodi/HBIRD: Yes, that is it exactly Tink.

When I was first ill my cat Weeble felt like the only one who was there to give me support and love. The only one that didn't judge or question me .It is hard to write about how bad things were back then. Or even to remember it. I was so ill my memory is quite hazy too, which is probably a good thing mostly.

Alison/Tink; Pets can also be great confidants. Personally, I know I hide so much of the realities of having M.E from almost everyone that I know. Talking to a pet, having someone to actually be fully truthful with, even more honest than you may be with yourself, can be vitally important.

Jodi/Hbird; Today my cats add a focus to my day and my life, and they are a constant topic of light and amusing conversation with my family, and a good daily distraction from the difficulties of life with M.E. It is also nice to have someone really excited to see you when you get up each and every morning!

Their individual little personalities are so interesting too. They are both such sweeties and so nice natured. (Unless you are an insect or very small animal of course! The opinions of cockroaches, spiders and scorpions may vary.)

I wish all the M.E. patients I know could improve their health enough to be able to have a pet at least, that would be so wonderful. You too Tink.  (((Hug for all M.E. patients that must spend most of their time completely alone, for now))))

I have actually just finished a photo book featuring a selection of my Geesha and Ziggy paintings, it is called 'Super cute, vicious, dreamy cats.' I'm really excited about this being finalised, as I started this series of paintings in about 2008.

The book also includes a little bit about me and some of the facts of M.E. -I like the education by stealth idea a lot when it comes to M.E.!

Alison/TINK: As a special competition, we are giving away one paperback copy of Jodi's wonderful new book to a reader here! (See link below for info on the book or how to order your own copy) The winner will be picked at random from everyone who comments on this blog post, either via the comment stream below or via emailing us at contactalisonlouisebell@gmail.com

To enter, simply tell us about your pets. Share how have your pets helped you cope with the daily struggles of having M.E., What pets do you have, What do they mean to you, and what things do they do that you love the most. Or even send us pictures of your pets!

We can't wait to hear your answers and for them to help other readers too!!

So for now, we hope that you have enjoyed this our 3rd official blog discussion, and that you will return here soon. We are loving getting to know you all and are mightily grateful of the community that you are all helping to create.

Best wishes, Much love and Blessings

The Tinkerbelle and Hummingbird M.E. Blog

x x

Link to Jodi's book ;

http://www.lulu.com/product/paperback/super-cute-vicious-dreamy-cats/18938308

'Dogs do not appreciate time that is set by convention; they do not divide a day up into minutes or hours, nor do they think in terms of weeks or months or years. A dog does not tremble at the thought of his own mortality; i doubt if a dog ever thinks about a time when he will no longer be alive. So when we are with a dog , we, too enter a kind of timeless realm, where the future becomes irrelevant'

©TheTinkerbelle+HummingbirdM.E.Blog