Ignored, neglected, betrayed when sick

Ignored and neglected when sick
When you get ill, you get sympathy. Warm words, caring, love, affection, prayers, checking-ons.... you think. Maybe if you have flu you will get all that, for a short while. Not if you have something else. Definitely not if you are seriously ill. Then what you get is people turning their backs on you. People going away. People right away disappearing from your life. Severe chronical illness seems to sort true friends from those who just pretend friendship. Most seem to have just pretended. Suddenly they have much to do, somewhere else. Suddenly they are busy. Somewhere else. Suddenly they don't have time - for you.

Okey we who are chronically ill don't need that. We do not deserve bad treatment. Therefore we withdraw. What happens to us is human. It happened even to our Lord Jesus Christ. When he needed support, his friends were sleeping. Not one hour could they stay awake with him and support him in his struggle. He even asked them for support - I have not asked. And He, too, was betrayed by one of His closest friends. It must have hurt Him enormously. For I have noticed that too - closest friends get very distant when you need their support. They are even the biggest cowards to betray you when it suits their own intests. They are not defending you against other world - they are letting other world smash you in their feet if defending would demand an effort or taking part officially, publicly. You get to think they are ashamed of you, not proud of you.

In the end, getting seriously and chronically ill is a blessing. It really shows you very clearly and without doubt who is the real friend. And heavens, they are not so many.

Sorry

Why is it that I feel I should apologize for annoying people with illness issues I write on my blog? I don't apologize anyway because this is an illness blog as I have stated. Reading is voluntary: those who are interested, read. And nowadays, honestly, with all these problems and feelings around them and everything... I just cannot focus on much else. Today I am trying to overcome my deep disappointment for not being able to cut down on steroids as planned. But every medicine I take now is essential for my life and in the end I am now struggling to keep alive so I just have to take what is essential. If I cannot live without something, I take it. It is as simple as that.

More than anything I value my family who wholeheartedly support me all the way. More than anything I value my true friends who stay with me because now very many take distance. They may as well go. I have today cleaned some of my sites from contacts that I did not anymore consider worth while. I have said goodbye to a dear (former) friend who has more interesting things going on in his life and things so well he does not need me anymore. That is life, and i try not to feel sad but relieved.

I have blocked people from IM / chat to be available for those who are true friends and don't play games and have fun with other people.

I trust that God is not leaving me alone. I also appreciate my colleagues who today have been in touch after a long silence. I was already thinking I was not even missed but yes I am - they needed to ask things from me, talk with me, hear my opinion... feels good.

I wish to get well enough to be there for my family, and not to be the kind of zombie I have been today. Today this was all I could do. Perhaps tomorrow will be a better day - after all, I am back to the original dose of steroids so it could be. But to what price...

When do I need professional help to overcome all these emotions and frustrations? Will writing about them be enough? What could I do? Write an e-book? Why not, to myself... Blogs, social media etc are after all so fragmentary and sometimes I feel I'd need to process text which has length and cronology and which would be stilisized before publishing.

My Pidgin contacts list looks odd now as I have reorganized it to serve my needs better. I will get used to it.

Steroids

Steroids improved my outhaling (PEF) values remarkably although they are still very poor, about 50% of the optimum. But it is better than yesterday's 20 - 25 % which means continuous feeling of suffocating and unability to do anything at all. Had several asthma attacks though. This morning (by 9 a.m. which is the time now) I have already had 3 - 4 attcks. Feel weak, tremble from all medication but am able to breathe. For once I am grateful about steroids. I feel the improvement. I have slept a bit better though not a bit longer... How would life feel with a decent sleep? There are things that confuse me and confuse my husband too but he is a great supporter and encourager. Yesterday I opened one social media site which I had not been using for ages, and I found tens of Christmas and New Year greetings from there - it felt like Christmas once more! I had also received messages, and I have found at least yet one who is praying for me - a total stranger but because he is a Christian, he does not feel like a stranger. During this disease, I have been betrayed and let down by one of my closest friends, and therefore it is comforting to see that God is taking care of me - other old friends are there, and complete strangers are used by God to provide me with prayer support. I am completely dependent on other people's prayers, I feel they are holding me above the surface and I feel every prayer in my being. I was praying, together with a friend, to see what plan God has for me because He has "mislocated" me in a country where I don't survive the outdoor air and weather without special equipment. I was praying for me to see some meaning in getting this seriously ill, weak and helpless. And God is answering: first, to show me that I cannot trust one of my best friends... second, that He is taking care of me in the form of even complete strangers, in addition to true good friends and family. Further, that I must and can rely on other people - something I have never been able to do. And still, that it is only Him I need, He will take care of the rest. God bless you all!

I am thankful

The Potential of Today and the Promise of Tomorrow
2009 November 26
tags: journey, life, love, potential, promise, thankful, Thanksgiving
by fibrohaven
I am thankful.

being_thankful

I am thankful for my smart, funny and charming husband. I am thankful for the years he selflessly held us together while never making me feel inadequate. I am thankful for his companionship, his commitment to our partnership, and his unending loyalty, support, and love.

I am thankful for my friends – old & new. My friends who know me sometimes better than my family. My friends who love and support me regardless of what I am able to contribute to our friendship. My friends who understand when I need to cancel a lunch date or head home early from an evening out. I am thankful for my awesome friends!

************

These are fragments from FibroHaven's blog in
http://networkedblogs.com/p19073711

I wanted to copy these fragments here because they could as well be written by me, they reflect what I feel too. I am thankful and grateful of you. I love you.

Embraced

I have been hugged today for a hundred times, about. I have been embraced by caring and kind words and messages from around the world, not to talk about the caring and love I have received at home. I have been in incredible pain all day and not only felt crippled by it but also been crippled by it, unable to perform tasks that belong to normal life, like getting out of bed, or dressing up. When the pain eased a bit for a while, I was so exhausted by it that I fell asleep.
It is so true and I want to remember it always: pain and stiffness stays by me but ALSO, and much more importantly, I have a couple of true friends that always stay by me no matter what, and my family who always stays by me too. I am surrounded by love and caring from above, and from all sides. That thought is more healing than anything else. I am so happy and proud and privileged to have friends to remind me of it when I forget it myself. With this level of pain, it is easy to forget.

So much to be happy for

I got flowers from my wonderful Dear Husband yesterday. Ohh how good it feels! It is so lovely when after a crash like that which I had, also good things happen. This is above all of course.

But also, a work mate of mine paid attention and commented my looks: I had dressed in matching tones - shirt, jacket, hair accessories - and she said I had so wonderful colours. It felt good.

Then, a friend to my late brother called and said he'd like to meet. He had other things to tell too but this felt the best of them all, plus that he offered to help with a practical thing at hand.

A friend of mine said she would be praying for my complete recovery so that I'd not need any medication at all. That was after she read my blog and saw how horrible life with meds can be. I have had really awful experiences lately. I am happy I have not been killed by them. I feel so encouraged by her prayers.

A distant friend did not give up when he did not find me in MSN. He wrote an email to me, asking what has happened. We had a long and wonderful discussion this evening.

I have been able to go for a walk. I have been able to do gardening today. I think I was out for two hours or so, all the time doing something. Wooow it feels great! I am so happy of it, although it always hurts my broken toe. Perhaps I have that toe so that I would understand to pace myself, not to try too much.

I feel so good of the sunlight.

And I don't feel sick anymore, every time I try to eat.

Lots of things to be happy for!

Grateful

Tonight I am grateful of my wonderful family. I amgrateful that the washing machine works. I am grateful of my daughter who cooked the dinner - such a delicious one, with rolls and everything! I amgrateful I had the access to doctor when I needed it. I am gratedful we all get help when we need it. I am especially grateful of friends who encourage me when it gets tough. You mean a lot to me, and I value you more than your weight of gold. I love you. God bless you !!!!