Is it strange how some people can't seem to understand how devastating it is having to loose you life like you do when you have M.E? Even though they have known you for years. I keep getting amazed by hurtful remarks made without thinking. As always when spring is here I get sad, melancholic and a bit envious because I see people smiling, enjoying the outdoors having fun with each other, happy the dark winter time is over. While we people with a house bounding chronic illness like ME/CFIDS are still locked up inside.
After all these years I still struggle with that, I can feel so much anger and longing inside that it feels like I could burst every minute now. Obviously it doesn't show, no one ever asked me what was wrong and how did I feel today.
I long to be able(instead of being dis-abled) to hop into my car or ride my bike and go to town, stop at my favorite coffee joint and drink an espresso on the terrace while enjoying the scenery or reading a newspaper. Walk to park and have a picnic with W., it seems light years ago since we did that. God how I miss that!
I can stand all the pain, the uselessness of my body, the numbness, the inability to move, all that is physical. What I can't deal with is the lack of nourishment for my spirit and soul. It feels like it's dry like a riverbed in the desert. I need to find a way to connect with like minded people, a good conversation, sharing a laugh, enjoying a meal together, just exchanging a phone call saying hello and how are you this morning.
It has been too long since someone asked me how I was doing that morning, did I sleep alright? Is that pancreas still giving me any pain? it would make a world of difference if there were some good friends who I could share the up and downs, the trials but also the highs with. At the moment there just isn't and I'm not joking when I say that it slowly kills me.
Today someone who should know me better suggested I should go and sit in a park on a bench an wait till someone would approach me for a chat. It hurts to think that they would think I would be so desperate that I should go and sit in the park and practically beg for some attention.
I'm human, I have a right to have likes and dislikes, because I am disabled doesn't mean I have to settle for less. I have a right to like taking classes, go swimming, go to a workshop, drink a coffee on a terrace. Why should I settle for sitting in a park waiting for someone to approach me, I would feel very awkward. Do I have to give up all my dreams and my likes and wants?
Funnily enough is that also always the question therapists ask in one of their first conversations, 'Make a list of all that you want' or 'What is it that you want?'. Than when you make that list or tell them what it is that you want it turns out to be totally unrealistic and not possible to achieve.
A therapist I spoke to suggested hosting afternoon teas for friends. A lovely idea, something I would love to do if.... I was healthy and actually had friends to invite.
Someone who is bed/house bound like me can't prepare a high tea, let alone having the strength to sit through one and not being overwhelmed by all the stress of organizing. As I said, not practical possible. The trick is to find something that is still enjoyable within my physical limits. It is becoming increasingly difficult to achieve that.
Weekends are full with being as 'normal' as possible for my husband, go to a grocery store, go a doggy park and my weekend is gone again, and I will have to pay dearly for these activities. Don't get me wrong I do enjoy the time with my husband but I would love to do something that was on my list of enjoyable things like visiting a museum or a concert.
Right now, I'm gong for a nap and hope this horrible melancholic, homesick feeling has lifted when I wake up.
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After all these years I still struggle with that, I can feel so much anger and longing inside that it feels like I could burst every minute now. Obviously it doesn't show, no one ever asked me what was wrong and how did I feel today.
I long to be able(instead of being dis-abled) to hop into my car or ride my bike and go to town, stop at my favorite coffee joint and drink an espresso on the terrace while enjoying the scenery or reading a newspaper. Walk to park and have a picnic with W., it seems light years ago since we did that. God how I miss that!
I can stand all the pain, the uselessness of my body, the numbness, the inability to move, all that is physical. What I can't deal with is the lack of nourishment for my spirit and soul. It feels like it's dry like a riverbed in the desert. I need to find a way to connect with like minded people, a good conversation, sharing a laugh, enjoying a meal together, just exchanging a phone call saying hello and how are you this morning.
It has been too long since someone asked me how I was doing that morning, did I sleep alright? Is that pancreas still giving me any pain? it would make a world of difference if there were some good friends who I could share the up and downs, the trials but also the highs with. At the moment there just isn't and I'm not joking when I say that it slowly kills me.
Today someone who should know me better suggested I should go and sit in a park on a bench an wait till someone would approach me for a chat. It hurts to think that they would think I would be so desperate that I should go and sit in the park and practically beg for some attention.
I'm human, I have a right to have likes and dislikes, because I am disabled doesn't mean I have to settle for less. I have a right to like taking classes, go swimming, go to a workshop, drink a coffee on a terrace. Why should I settle for sitting in a park waiting for someone to approach me, I would feel very awkward. Do I have to give up all my dreams and my likes and wants?
Funnily enough is that also always the question therapists ask in one of their first conversations, 'Make a list of all that you want' or 'What is it that you want?'. Than when you make that list or tell them what it is that you want it turns out to be totally unrealistic and not possible to achieve.
A therapist I spoke to suggested hosting afternoon teas for friends. A lovely idea, something I would love to do if.... I was healthy and actually had friends to invite.
Someone who is bed/house bound like me can't prepare a high tea, let alone having the strength to sit through one and not being overwhelmed by all the stress of organizing. As I said, not practical possible. The trick is to find something that is still enjoyable within my physical limits. It is becoming increasingly difficult to achieve that.
Weekends are full with being as 'normal' as possible for my husband, go to a grocery store, go a doggy park and my weekend is gone again, and I will have to pay dearly for these activities. Don't get me wrong I do enjoy the time with my husband but I would love to do something that was on my list of enjoyable things like visiting a museum or a concert.
Right now, I'm gong for a nap and hope this horrible melancholic, homesick feeling has lifted when I wake up.
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