Awareness for me turning into M.E.

M.E. took over my life a little more than five years ago and little by little it’s trying to take over the whole of me.

The 12th of May is Worldwide M.E./CFS awareness day. The week surrounding it its Action for M.E. Week

• Dress up! On May 12th, wear blue for ME/CFS/SEID, dye a strip of your hair blue (when people ask why, tell them it is for ME/CFS/SEID awareness), or just get creative!

 

http://www.actionforme.org.uk/home
http://solvecfs.org/international-mecfs-and-fibromyalgia-awareness-day-may-12/

I’m coming out about the severity of this illness instead of trying to keep up a social acceptable profile.

That’s what M.E. / C.F.S. / Fibromyalgia awareness day asks of us patients.

Share what it’s like. This is a hard task.

Normally  I try to only share the few moments in my life that will get approval and fit in with normal life standards.

But this doesn’t help the cause, getting awareness

is explaining to people this isn’t a psychological problem or just being a bit tired , it’s a severe debilitating physical disease and thank God there is more and more prove of this.
Even Obama has expressed his concern and sees it necessary that more research will take place. We need funding and awareness.

I lost so many friends, family, acquaintances because of me turning into M.E.

Still there is so much more to be lost.

When I got diagnosed in 2011 I wouldn’t believe it.  Weird name, chronic fatigue syndrome, I wasn’t sleepy, didn’t sleep that much, never did. I was in pain not asleep. I dismissed the diagnoses, this wasn’t what I had, little did I know back then. After a year I couldn’t cope with the 24/7 suffering of excruciating pains, in my legs and arms and left side of my brain. The doctor diagnosed me with fibromyalgia. Got heavy pain killers, felt better. But symptoms got worse, after a year, a Dutch specialist (and cardiologist) in chronic illnesses saw me and diagnosed me with M.E. (Blood analyses and MRI scans showed proof)

I was a dancing, passionate, creative, giving, sharing person. Always inviting people into my house, inviting people over for diner ( cooking was one of my passions). Loved getting to know new people letting them  into my life, my world, always ready to help, to share everything I had and taking friendship super serious.

(I spend my last dime, because taking the wish of a friend to attend to her wedding over seas so serious. Because of me wanting to respect the friendship. I was scared that if I wouldn’t go I would lose this dear friend.  ( I think this was a wrong but passionate decision looking back at that situation).

But that was me, always giving, always trying to help, to be there when people needed me.

Don’t get me wrong, I am not even close to being a perfect or balanced person and I don’t think I am. I am always learning and trying to be a better person.

All I did in life, I did fully committing, with all my heart and love, not ever keeping a bit of it for myself.

I have to shyly admit that Jesus has always been my inspiration.

The person I was is no longer me.

M.E. took here away, every day a little bit more, I’m afraid one day there will be nothing left of me.

Now my life consists of being in bed most of the time. Then I have maybe one or two times a month in wich I can go grocery shopping with my husband. Him trying to handle my wheelchair and the food cart at the same time. ;)On very good days I can walk myself what i really prefer people. In a wheelchair it’s no fun your losing the little bit control that’s left in life.  I might be able to go to the spa ont to two times a month, to do some stretching, exercise is forbidden. In summer because of the warmth I will be able to sleep without an electric blanket, the rest of the year I need it to dull the pain. I do have to sleep alone. I can’t handle noise, not even breathing sounds, movement in my bed and in my bedroom. Because of over sensitive receptors who put the volume of your senses on 200%

No dancing, no go with the flow, not being able to react passionate to things and to be touched, being inspired and paint or write for a few hours. In July and August I’m home bound again because it’s to darn hot in th south of Spain. Going to Holland is an option, but the travelling is very straining. In spring and fall, if im lucky and don’t get infected by the bazillion viruses always flying around and infecting me because of a very low defense system, I have some mobility, it’s very hard not to go overboard in these months. You always feel like walking way way in the back, missing the things happening in the front and then when its possible to run to the front regions and fill up what you have missed out of.

That’s how it’s been for a few years now. But the bed bound, home bound state of being is spreading like a drop of black ink in a glass of water, (make it a shot glass).

I will not mention all of my symptoms and pains. ( you can read about that online the best source I think is Carruthers & van de Sande , they have done big research and in their guidelines to diagnose M.E. It’s explained very thoroughly)

  http://www.mefmaction.com/images/stories/Overviews/Canadian_ME_Overview_A4.pdf

I won’t tell you of what exactly I have to miss out of.  ( it will make this post to depressing)

I won’t tell you how many days a year I actually feel well.

M.E. is who I am, fully becoming  and me is gone.

I sometimes don’t even recognise my life, my character, myself.

I feel broken ⇒ I’m not dying (maybe sooner than a healthy person but not as quick as someone with a terminal disease ), so I should be grateful and thank God everyday for my life. At the same time I’m not living, because less and less is possible, as an example

I went from

• dancing and sporting ->
• traveling and going to a museum ->
• visiting friends, giving dinner party’s ->
• staying at home watching a movie, cooking, gaming, painting , writing->
• staying in my bedroom, reading listening to music ->
• staying in bed, listening to an audiobook while looking out the window ->
• staying in bed blinds and curtains closed, lying still trying to sleep

The first few things are almost impossible to still do, the last few stages I switch back and forward through.

At the moment. It’s been a long time of the last two stages because of viruses and infections on top of my chronic illness.

that ( being in those static stages) makes you lose your  hope.

I am fighting daily.

Trying to be brave about this.

Keeping up a social acceptable front. 

 I am so tired and in so much pain, I don’t know if this M.E. is a life.
But most of all what makes this disease so harsh, it is the loneliness, you are pushed into.

• Partially because I spend so much time in bed, in my bedroom.
• Partially because I can’t give anymore, and when you don’t give attention to others you won’t receive it.
• Partially because people take their distance because, they don’t get it, or think it’s too much for me to bother me with an email or phone call. ( I can’t always pick up the phone, and can’t always reply emails).

It’s just so ALONE, so lonely.

You know you need some support to get trough these rough times, next to the support my husband and son give me, but it’s so hard to get and to ask.

Who could you ask for support? There is no buddy system for patients with M.E.

There isn’t an awful lot I can give in return , it’s actually pathetic how little I can give.

The only thing I can give is my gratitude and send loving energy.

I’m going to ask something from you, you who I don’t know, or that I might know a bit from somewhere in my past, you who I lost, or who I knew well, you who I love.

I feel very shy asking this but I have to be brave and honest, could you please send me or anyone you know with a chronic illness

a postcard, a picture anything, a drawing from your kids, a poem, anything will be fine through the actual mailman.

 

 
That something will make it easier to look forward to the next day positively. Because there might be a surprise, a sign of life, from people who still think, or after reading this post do think “me” matters.

Matters enough to send some support, some fuel to keep hope, the spark alive.

I know I ask a lot, it’s kind of weird asking for something like this. It is so natural social behaviour that when people are in a hospital for a few weeks, to send our support. They get cards, fruit baskets etc. People with broken limbs get nice drawings on their cast. We are sick for years and years and years. I understand it´s hard t imagine and therefore it does feel awkward to ask, but I know it would help me and so many of the people with the same faith so much.

Just to not have to feel so darn lonely and alone in this.

I’m so sorry to ask this of you, so sorry to burden you with looking out for me.

But it will mean the world to Me. (and all the other Me´s that are turning in to M.E.´S

THANK YOU for reading,

With love M.E., Myself and I.

This is me, always smiling

Xx Steffie

This is M.E. Always suffering and fighting