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NOT SURE WHAT TO DO

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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Sun Aug 28, 2016 9:56 pm

I think I've reached a point where nothing I usually do interests me anymore. I used to enjoy jigsaw puzzles, but lost the motivation. I like music, but all I seem interested in at the moment, is watching tv.
I think I've reached a low point that I don't know how to pick myself up from.

A second cousin of mine who I talk to on the phone every weekend said to me tonight, that she thinks that I might have a sinus. I looked it up on the internet, and the only reference to sinuses was the ones in the nose, so I'm no wiser.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Mon Aug 29, 2016 5:30 pm

I asked the District Nusrse today if the sores I have are from pressure, or whether they are sinuses. and she definitely thinks they are from pressure. I vocalised my plan to her about asking her to stop and give me a breather if I get too overwhelmed with pain while she is doing the dressing, and she agreed she would.

For some unknown reason my stomach spasms have started. They annoy me so much as if they go on for too long, they give me sore stomach muscles.
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Re: NOT SURE WHAT TO DO

Postby realityhere » Tue Aug 30, 2016 1:43 am

Do the stomach spasms start when the dressings are being done? It may be the body's way of dealing with the pain and stress of the dressings? I don't know if meditation tapes or music will help, but each person has a tolerance level to where the pain gets very physical and hard to push the mind past the pain and the negativity, I can understand that. It is exhausting at times. Just try to take extra care of yourself after the dressings are done, you certainly need to take the time to recover some balance for yourself.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Tue Aug 30, 2016 9:45 am

Realityhere.

At first I noticed the stomach spasms only came on when the nurse rang to say she was on her way, and while she was doing the dressing. Now I seem to get stomach muscle spasms at random times of the day and night, and I think it is just something my body has started because I have no control over what the nurses are doing, other than to say "stop" if it gets to much, and they give me a couple of minutes rest.

I did think of trying distraction methods, but I'm so fixated on when pain is going to occur, that distraction doesn't work. I feel like I have to be fully focused on what the nurse is doing, or someone should knock me out before it is done, and then bring me round after. I am really feeling the left cavity this morning. Have taken my antispasmodic, but Paracetamol doesn't touch me.

Yesterday when the nurse put extra packing in the open areas, it made it comfortable all day, so I'm going to ask her to do that again, trouble is, the dressing on the left seems to come off over night and that is the most painful one.

I am usually quite exhausted by the time the dressing(s)have been done.

I usually go out as soon as the dressings are done to try and take my mind off it, but it doesn't always work. I feel like I'm stuck in a vicious circle and there is no way out. I'm dreading the appointment with the Dermatologist, and that isn't until early October.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Tue Aug 30, 2016 7:51 pm

I've not had a great day today, In fact it's been quite crap. I woke up with hiccups at 4.30 this morning with and couldn't get rid of it for 3 hours. Got back to sleep at about 8am, and got up by 10am. Have learned that only water gets rid of hiccups. The second time I woke up at about 10am, I was in pain with the left cavity sore, and took some Paracetamol and that didn't help. Went and got on the bed to try and relieve pain at lunchtime, by which time the district nurse was on her way. She re-dressed the sores, but this evening I am in the same pain again. The nurses keep saying the sore is clean, but what is going on inside.

I know I have been saying I just want to run away from the Dermatology appointment, but we need to know what is going on, so I may have to go to the appointment drunk out of my head.

Just started with hiccups again! I'm really getting frustrated and angry, and feel helpless.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Wed Aug 31, 2016 2:31 pm

Been to see GP this morning, and told her how low I'm feeling at present. Told her that the referral to a counsellor came to nothing unless I'm a danger to myself or others. I told her not to bother talking to them as that was something she had suggested. She thinks the stomach spasms are actually coming from the bowels rather than the stomach. Could be because I'm eating less. So she prescribed Buscopan for the spasms, some antibiotics incase my left cavity has got infection, as yesterday, I was shivery and then hot. She's given me something to help me sleep, and some Oral Morph in case the pain gets like it was yesterday again.

She has now agreed to see me every fortnight instead of monthly while all this stuff is going on, as I really feel like I'm losing me in all this. Oh and the good news is, I can still drink alcohol. She is also going to hopefully get in touch with the Dermatologist before my appointment to explain things and let him know that I haven't been looking forward to it.

If I had the body I feel I should have, and I wasn't averse to people touching me 'down there', I wouldn't feel so low and out of control. But it was when the nurses switched from creams to dressings, that they took the control.
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Re: NOT SURE WHAT TO DO

Postby realityhere » Wed Aug 31, 2016 11:43 pm

"If I had the body I feel I should have, and I wasn't averse to people touching me 'down there', I wouldn't feel so low and out of control. But it was when the nurses switched from creams to dressings, that they took the control."

You're kinda between a rock and a hard place. Because you've transitioned to male gender in mind and thought as well as male hormones and a hysterectomy, it's difficult when the lower half of you is not "physically there" due to the medical constraints of the spinal bifida paralysis and lack of blood circulation. Do you think that this dichotomy is what is doing a mental number when it comes to physical touch, even if it's just for assuaging physical pain?

I realize this may be a sensitive subject that you may not wish to discuss. My apologies if this has offended you in any way.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Fri Sep 02, 2016 7:50 pm

I have never thought of myself as female anyway, and that is why I knew one day, I was going to have to transition. When I went into it, I was not expecting a surgeon to say my lower body would not support surgery.

I struggle with anyone looking down ther, but I almost freak out when they touch it, even though it is a part of me that feels alien to me.

This has been going on so long, that I've just reached my almost lowest level of coping.

Trojan Warrior.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Sun Sep 04, 2016 8:59 pm

Been feeling really low again today. I hate living in a country where the Mental Health system is so slow at dealing with problems. I have found out by looking on line that one of the drugs the doctor prescribed me today, is not a sleep aid(as I had thought, although she has prescribed me one, but she has also prescribed me an anti depressant(they don't normally work while the problem(s)still exist.

I had feelings of anger in me again and actually felt like punching someone(for no apparant reason than too release something in me. The hiccups seem to have finally gone, but today I have been having this strong urge to turn to the cider again, and today, I don' think it is going to win. I'm so fed up with feeling like ****!

Trojan Warrior.

PS, Got that wrong! One is a sleep aid, the other is an antibiotic.
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Re: NOT SURE WHAT TO DO

Postby realityhere » Wed Sep 07, 2016 2:44 am

Hi TW,

How's it going? I hope you're finding some solutions are working for you? Pls let the forum know how you're doing.
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