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Living with a DISABILITY - CRPS/RSD - by Tracie Jarvis - The Power of Talk

crappy day

February 24th 2007 09:15
ok, so I know you don't realy want to hear me going on and on about how bad my day has been or even how much it hurts. I certainly don't want to drown in the mysery of it all, but the thingis I'm having a really really bad time at the moment.
There are so many things inside my head I just don't know how to deal with any of it anymore.
I am on high levels of medication and my doc doesn't want me to have increased doses every day, he would prefer me to increase the dosage if I have an event or occasion to go to which may increase the pain even further. This (I think, I hope) works well, but as soon as I start reducing the medication back down, I am reminded of the intense feelings I live with every day.

People don't seem to realise how bad it is. So many ask if I have pain every day. When I reply yes, all day every day, they don't seem to believe me, or perhaps they just can't understand the concept of it.
How can anyone really know or even understand what the pain is like. basically from my waist down I have many problems. Even something as simple as emptying my bladder sends electric shocks straight down my legs and out thru my toes (some days it will trun right arund and shoot straight ack up the leg!)?
How can they understand that, yes, some days I can hobble around my house without my sticks, yet other days, I can barley get mobile using aids?
How can they understand that the pain is nothing like any other sort of pain, even child birth is a dream! One the one hand it's on the surface of my skin and the slightest touch even from the bed sheet will cause me to cry. On the other it's in real deep and is heavy, sometimes like electricity sometimes just a sharp pain that stays and stays?
The insurance company is giving me so many problems, they have cancelled my insurance payments stating the injury was not work related.

How in the world could it not have been?
I was a small business owner. I could not afford to have many staff so did most of the shifts myself. I owned a pizza store, so the hours were terribly long and intense. I opened the store all night on Friday and Saturday to capture the partying public.
On average I could have worked 80-100 hours per week. I know this sounds astonishing, but I had no choice. I lifted 25kg bags of flour, moved deep pizza pans around and an endless amount of healy and lobourous work.
So, when I ended up in hopsital in traction due to a disc collapsing and crushing the nerves in this area including the sciatic nerve, it was immediatley obvious that it was work related. Anyway, in 3 weeks I am attending a teleconference with an Arbitrator. Together with my solicitor, I have served legal papers on the insurance company. I hope they will see the stupid error in their ways and reverse thier decision.
Because of all this trouble we are in such financial difficulty having debt from the business because we had to close it as well as the normal family bill/debts. M
y husband is the sole income earner in the family and he feels as if he is going to work every day just to pay all the bills. He is on a reasonable income but its still not enough.
I haven't been able to afford to get the proper physio and treatment I need. I have cut out all I can, but when my medications cost around $300 per month and doctors bills are $80 per visit, its still devastating for us.
I have been silly looking in the positions vacant thinking I need to get a job. this is the first time ever that I have not worked, I feel like I"m going insane!!
I feel like I am letting down my family.
Yes, I am everywhere tonight!
I have so much built up inside and have a massive headache because of my tring so hard to ignore the pain. I'm damed if I ignore the pain and I'm damned if I don't.
It seems to affect my whole nervous system.
My husband has just arrived home and looking at him reminds me how sad I'm feeling about our sex llife.
He is so understanding and never pressures me. I dont get much of an urge to have sex anymore and the though of it makes me start to worry because of the pain I get. I never tell him how much it hurts, thats not fair on him.
Again I know this sounds odd. It hurts, but of course the feeling is soo good. The pain and the good feeling are completley separate.
The biggest thing that really pissed me off is that I can't have Orgasms any more. Yes, sure, I get turned on and I can feel lovely sensations, But it never growns and grows into the most glorious feeling. I so used to enjoy sex, loved having orgasms and always made sure things were done to satisfy the both of us, but it just doesn't happen any more.
Again, does anyone understand?
No,
I don't thin k so.
How could they?
I am sure they are thinking that we are just doing something wrong. Well, yes sure, there are many limitations now, I cant sit on top anymore and cant move around lots, but still, there are ways around that and i do have a good imagination, but it still doesnt work, i still cant have orgasms. This problem make it harder to even want to be making love to my husband as I and scared I am no longer good enough for him, no longer satisfying him the way I could before.
You know right now I could just write and write all night.
This isn't fair on you or me, so I will leave more for next time.
Until then, enjoy your night and days.
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2 Comments. [ Add A Comment ]

Comment by David

February 24th 2007 10:50
This is a very difficult post to respond to ... because there are so many things I'd love to write ... but if I were to tell you the brutal truth? I doubt you could handle it all in one hit ... (if any of it, for that matter) ...

I really enjoyed reading this Post... but I read so much into it ... and want to say so many things ...

And, whenever I've told people my perceptions? ... They generally can't handle it ...

So, I'll ask a question instead ...

This fear you have of not being able to satisfy your husband ... Have you discussed that with him? ... And found out what he thinks about all this or is it just a thought circling around in your own mind? ...

For, in my limited experience of life? ... Most fears are unfounded and ungrounded ... because people don't ask the person in question ...

It's great that you Blog about this .. but I think only your husband can answer that question and quell your fears ... Talk to him about it would be my suggestion ... face the fear rather than detour around it??? ...

David ...

Comment by Tracie Jarvis - The Power of Talk

February 26th 2007 01:01
Hello David,
Thank you for your comment.
i gues there is a few things, yes satisfying my husband is mostly an issue that is circling around in my head but it is also a real topic that i have spoken to my husband about. Being a beautiful, gentle man, he has no problems at all and said to me "isn't it obviuos that i'm happy?" Yes, he is happy, although it is different he also said ther is one good thing, he gets to have me right where he wants me and I wont change it on him or move around too much. I do have to laugh about this.
You know, after all that I still have concerns and yes fears. Is it because I'm just being insecure and silly? probably, but I can't help it. I know that my husband married me and fell in love with me for many reasons, but much of this has changed now, which means he has to love me for different things. Becuase most of us dont like change too much and we know what we like sexually and what we don't like, this has changed and perhaps there is a lot that has been taken away from him and of course from me as well. Facing the fear reagrding sex isn't easy. we can face it once or twice, but if the fear is greater than that, talking is only one step, well for me it is anyway.
I have so many other questions and concerns, some days it's worse than others, but I will get through it, I have to.
I want all of you t put yourselves in my position for a moment.
You are in a very long term relationship, in this time you and your partner have explored sexually and have learnt what you like and don't like and perhaps what you may like to try in the future. Every part of the sex is good, very good.
Then, all of a sudden, the rules have changed, there are many restrictions, you can no longer move around the bed, change positions, have different roles depending on the mood of each party. Even being spontaneous and having a bit of a play is different and not as frequent. The pain in your back and legs increases and is sometimes thru the roof. You try to hid this from your partner, but you can see on his face that he knows and feels bad.
How does this make you feel?
Do you think you will be able to adjust?
Will it matter if this is the way it will be forever?
Now, put yourself in my partners position and ask the same questions.
You see my concerns are geniune and realistic. Yes, some days they are overboard, but I'm only human and a female after all..LOL!
Thank you for giving some good advice.

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