A.My Poem & feelings

Ouch, I have a pain in the head. Who threw the hot poker at me?
Now I have a headache and can’t focus.
I am trying to talk and the words are not coming out.
Oh God, what is happening? I am cold and tired.
I went to stand up & my left leg gave way.
I am so very cold, my head hurts.
I am in an ambulance, now in emergency, being told what to do and trying to answer the questions.
No one can understand what I am saying, this is so scary.
I am freezing cold and in pain.
Where are they taking me now? A test of some sort I guess.
I have been poked and prodded, had blood taken and an ECG done.
I have been pushed and pulled. I am so tired.
Oh, the relief from the injection, finally the pain is going…I just want to sleep.
They are waking me up again; I am going to a ward.

I get so tired; maybe tomorrow I will have more strength.
Who are you? The physiotherapist, the Social Worker, Occupational Health, Speech therapist, The Neurologist…OK I have seen all of you. You’re all here together on rounds now.
I’m lonely; people come and go, oh so briefly.
Hello…I don’t know you? You are the Chaplain, OK; you are saying I can talk to you?
I am tired, I am scared, and I can’t stop crying. I can’t pray, I keep crying.
Why is this happening? What is happening?
Another injection to stop the nausea, I will just have another sleep.
I can hear a voice I know…Hi, it is our Pastor and wife.
Sorry I can’t sit up fully, too nauseous. I just want to put my head back.
You sat there quietly and let me talk or not. What a relief you are listening.
You gave me a hug, I cried and you let me. What a relief you understand me.
I can’t pray, you prayed for me. You said it’s OK, God knows my thoughts.

People ask me how they can help me, and then they do what they think I want.
Why don’t they understand what I really want? Do they really care?
Talking wears me out, listening wears me out. Thinking is too hard.
All I really want is for you to be there for me.
You don’t need to carry on a constant conversation, just be there with me.
Allow me to cry if that’s what I am doing. I need to cry, I need to laugh. I need to be me.

Does anyone really want to know how I am feeling or what I am thinking or are they just being polite when they ask?
Everyone asks me how I am; I get tired of explaining it so sometimes I will say “I am fine.” This does not mean that I am fully better; it means that I don’t want to go into it at this moment. Please accept this and don’t probe further.
Please don’t tell me you know how I feel. Unless you can crawl into my body you don’t know.
I am still the same person I have always been. Please treat me the same. I still have the same interests and I want to share the same things we have previously. I do want to laugh too. Humour is good. Don’t be afraid to laugh.
I am home from hospital; this does not mean I am suddenly fully well.
It was great that you visited & phoned then, please remember I am still struggling.
When no one comes or calls I feel invisible, forgotten.
This is not going to suddenly go away.
I have to live with this illness for the rest of my life. I don’t know when or if it will happen again.
I do appreciate your calls or visits; they can be brief, it is important to keep in contact when I am home too.
Please invite me along to things; I will come to what I can.
If I say yes, then on the day can’t come, please understand, I don’t know how I will feel on any day.
Allow me to say no sometimes as I have a lower threshold and strength.
I have to pace myself.
I am home and trying to do my normal things, I get so tired so quickly.
Sometimes I will be happy and full of energy, other times I will be tired and quiet.
The best person you can be for me is YOU.
Stay the same as you have always been, talk with me, laugh with me and cry with me.
Respect me for who I have always been and don’t treat me any different.
I may be limited physically, or changed by the illness. I am still me.

Sue Wilson 2006