” To be a person is to have a story to tell ” …
- Isak Dinesen
Do you ever get angry ?
I do,
I get angry at all the everyday little inconsequential things -
I get angry at the water going cold in the shower
I get angry at next doors dog barking
I get angry at my toaster for only having two settings… Warm bread and burnt
Mostly though, I get angry with being ill …
I get angry at the doctors and their never ending rounds of blood tests and long waiting lists,
I get angry at people for not understanding,
I get angry because even I don’t understand,
I get angry at the statement, “you never really know someone until you need them”, being so right, and wishing so very hard that it was wrong,
I get angry at not having my old life,
I get angry at *it* the deep, dark water of *it*, that covers everything.
That makes it impossible to think, to concentrate . That makes everything painful and hard.
M.E is like a overbearing, cruel, parent with a disrespect for fun.
You have to ask M.E’s permission to do everything…
M.E, can I go out for a meal ? And can I have a glass of wine?
M.E, can I walk to the shop down the road from our house?
M.E, can I take Milly to feed the ducks?
M.E, can I stay up past nine on Saturday night and watch a movie with Big J? …
M.E never actually answers, ( because that would be weird!?! ) it just let’s me do it anyway, and then it comes back and bites me in the butt for being so stupid.
If M.E could talk it would say this ” no you really, really can’t do those things, are you stupid?! No, not any more, now get with the program, this is your life ”
It brings on the black water that covers you in darkness making it hard to think through , hard to breath.
It makes you forgetful and disoriented and clumsy.
It brings on the pain in your head and your eyes and your ears and your throat. It makes your whole body ache and sweat. It makes you weak and makes you shuffle your feet and drop things like an old person.
It makes you feel like you have the flu, it makes your eyes and limbs so heavy it feels like you’ve been drugged.
It makes life hard, sometimes harder than it seems possible to deal with…
Ultimately though, because of all this , It just makes you feel alone.
I have ME after getting Glandular Fever at the beginning of last year. I was ill, and then I just didn’t get better.
And now I get angry, which I know is not very pretty. I’m trying not to let that turn into bitterness, because that’s just rubbish, but sometimes it creeps in anyway.
Sometimes you can feel all Zen-like about it and console yourself with all the lessons your learning and how life is always light and shade.
But sometimes you just want scream and stamp your foot and shake your fist.
I should also say I don’t feel that ill all the time.
My life is broken up into chunks of having a big crash, slowly getting over the crash , feeling okay ( but never normal “okay” ) and then gearing up for another crash.
I guess it’s a process and everyone has a story, everyone’s life is hard at points, I just don’t want this to be my life. I know that may sound arrogant, I mean why not me right? But there it is, this is just not how things are supposed to be.
I’m just not sure if i should be leaning towards the side of acceptance of it, or be fighting with it still ? there is no cure and no guarantee things will ever be different from how they are now, although I’m hoping they will be.
This isn’t a pity post, I really don’t mean to be grim. I just wanted to document the feeling .
I think it’s important to be honest. Lots of blogs can be filled with amazing stories of seamingly perfect lives, and if you only write about the good stuff then of course things seem perfect, there’s nothing wrong with that, I just think that maybe writing about the less pretty parts of life has a value too. Not all the time, but just when it’s poignant maybe.
William Carlos Williams said,
“ Their story, yours and mine — it’s what we all carry with us on this trip we take, and we owe it to each other to respect our stories and learn from them.”
I really like that, and maybe writing this will help chase away the anger and help anyone else feeling angry and helpless at something they can’t control too. There is so much we don’t have a say over really isn’t there?
It’ll all be okay : ) XXX
oh Helen you are an amazing person who writes so eloquently without an ounce of self pity. I am so, so sad that this has happened to you. You are one of the funniest, brightest, nicest (lots of est’s here) I have EVER not met. (you know what I mean).
I wish I could smack that M.E. in the face and tell it who does it think it is dealing with. I wish I could help take the pain away, I wish I lived nearer so I could at least do practical things for you.
I totally understand about being let down by those closest to us, been there. It does make you stronger (emotionally) if not very sad in your heart. Its life sweetheart. You can pick your friends and all that ….
Always here for you. ALWAYS . xxx
Thanku so much Karen, you are a true friend and I love lots! one day we will meet up for real, i know it XXXX
I can only echo what Karen has said really. I completely agree with what you said about the less pretty parts of life having value too. In fact I think sometimes they hold even more value than the sugar coated parts. When I read this, I didn’t hear self pity at all. In fact it just makes me realise just what an amazing person you are. Big gentle squishy hugs my lovely Helen xxxxxxx
Thanku gorgeous wifey
its a funny, hard, weird time, im not sure how im supposed to feel about it really, but writing and lovely friends’ like you really do help xxx
I get angry because I don’t have a magic wand to take away your pain. I get angry because just when you feel brighter, M.E drags you back down. Like you said Hun, it WILL be okay and those that love you are here to support you, always
xxxxx
Sweetie thank you for having the courage to write this down and share it with us. There is so much value in honestly and expressing the lows like you say as well as the highs. I am so deeply sorry you are going through these tough times and have M.E. I am hoping and praying things get consistently better for you. You are so right, sometimes we fear writing about the rain as we believe all people want to hear about are the rainbows. It’s simply not true. We are here to support you. You are a wonderful person and I know things will get better for youxxxx
Just really wanted to say thank you for the post.
Being somewhat naive on this illness you’ve expressed it in such a way I understand and admire you.
Stay strong xxx
Oh what a beautifully written post about a subject not so beautiful. Is like a feeling of being trapped in ones own body, taken over. Ones mind off on beautiful adventures that the body can only dream if doing. Big warm and friendly hugs to you. I know I often only write about the pretty stuff, though the ocassional real life stuff post pops in, but for me it is an escape, the real life stuff I just feel more comfortable sharing with the real life people who know and love me. My confidence has been knocked a little not long ago people perceiving me as a particular type of person which couldnt be further than who I REALLY am. Is a personal choice whether to share ones battles in life though I know you sharing this aspect of your life with us had helped so many people, touched so many and has made me a very real person behind this screen with thoughts and feelings, get to know myself a little better and I thank you so much for it. Keep dreaming of those wonderful adventures your body shall take you on soon, it’s the following of our dreams that keep us uplifted and focused. Big squishy hugs my lovely xxxxx
Aww Helen!!!!!Articulate as always – it makes me so sad to think that someone as lovely and as spirited as you has been cursed with such a frustrating illness. I can only imagine what you go through. There is always so much stigma attached to illnesses like this because half the time people don’t know what it is and then when you say something like “I’m so tired all the time” the’re just totally dismissive about it. M.E is a serious and opressive illness and I can feel your frustrations. Honestly, I just hope you have more good days than bad ones. You’re a little piece of sunshine and you always cheer me up – I wish there was something I could do to help… Thank you for sharing your struggle with M.E and I think it really sheds some light on the illness. We’re all here for you xx
Dont know if its any help but here is my story….M.E got me first when I was about 23 and that was 25yrs ago when it was still barely recognised. I was lucky, I had a brilliant GP, loving parents, great employer. It took about 15mth of rest to get through that first time but gradually I improved and got my life back.
Unfortunately, it has come back to punish me several times since, the last in 2003 when it flared up after a bout of flu and bad time with asthma. This time I was living alone and in Leicestershire so although my parents could give support they were still 180 mile away. I was working for wonderful employers though so went to work when I could and when I couldnt I crawled back to bed in pain to the core of my soul. I wasnt going to give in though, I struggled on determined not to move back to my family.
Now, it doesnt work for everyone but I already had acupuncture for various health issues (it works for me) and I had it also towards dealing with the ME. Its not a cure but it did help increase the energy levels after each treatment and there was a tapering off towards the next treatment. By the end of 2009 I was coming on really well, getting my life back & then my gall bladder gave out so there was 2010 gone. Luckily, now Im fitter than I have been for years. I look well, the dark circles under my eyes have been banished & I live my life to the full.
I know how grim the bad days can be, I have been there but I would say that there is hope. I think it helps to understand part of how it attacks the body and why you feel so unwell and to take a really good multivitamin with minerals. It seems that trace minerals are lacking in sufferers.
The other problem is folk not understanding that you are ill- if a limb is missing or you have purple spots then you can clearly be defined as ill but M.E is far too subtle for that. I used the following analogy to explain it. A fit, well person has a full tank of chemicals & minerals to operate their brain and thereby their body. If you get run down then your tank can be in the amber but a person with M.E is at the bottom of the red zone, just about running on empty. Whatever levels you build up you use on good days and run back down to bottom of the red again. Hopefully, with lots of love and determination, your body will learn to fight back and give you back the strength and vitality you are currently robbed of.
Much love and hugs x
Sweetheart, you’re so strong and I think putting down in words like this what you are going through is incredibly courageous. Sending you love and light xxxxx
It’s the hardest thing to try to explain M.E but this is it! I have had M.E for 9years (much better than I was) I feel the warm weather of living in Spain contributed so much to me feeling better.
This was so lOvely to read.
Think positive thoughts.
I wouldn’t wish M.E on anyone just a shame so many people plus doctors do not understand it the amount of friends I lost whilst I was suffering at my worst is crazy.
Take care
Oh shit! I’ve been missing you and thought I just drop by. Pls send me a mail if you feel up for it: I’ll think about a lot of funny things to say, write, show to push ME away for a sec. At the moment though I have nothing to say but how I admire you for your honesty, strength for sharing even your not perfect side and your unlimited creativity.
Sending good thoughts and hope those “friends” mentioned realise soon how stupid they are for not being there for the cool, lovely person you are!
I just came across this now, I’m sorry I missed it but I know you have told me a lot of this anyway. You are an amazing writer and you must NEVER feel alone. There’s not much I can say and I will never truely understand what you go through but I am always here for you. Take care xxxxxxxxxxx
Hey sweetness,
I just want to say thank you for your honest and raw projection on this destructive illness,
I have had ME for six years (diagnosed ) but have suffered from my early teens,
My art gives me back my purpose in life as others enjoy what I enjoy producing but most of all having such a wonderful Husband and three beautiful and understanding daughter does really help!!!
letting them read others words just shows them what I say is true and that I like the many other people who suffer
“We DO NOT choose” to be this way , we just are !
“Just because my body has no elastoplast or bandage on , we are STILL ILL !!!!”
Live Laugh and Love
Steffie
xxx
Hi lovely, thanku so much! it is always a worry to me about whether to write the more personal side of life here, and you have opened my eyes to the fact that its worth the risk. Im so happy if it helped, and you have more than helped me in return with your words, many many thanks xxxxxx