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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Extremely stressed

Ive been scratching/cutting myself trying to relieve my stress level (endophins) as Im so so stressed out as I have to attend an appointment in the city today and arent up to it at all. Cutting to relieve stress levels (for endorphin rush) is something I hadnt done in a while. So its upsetting Im finding myself doing this again. I dont know how else to get my intense level of stress down when Im forced to do things my health isnt up to doing.

I have diarhear bad so scared of making a mess (and actually did accidently go on my floor a couple of days back as I didnt make the loo), I cant talk properly still due to the pnemonia im still trying to get over and go into coughing fits and loose my voice and get dizzy when i try to talk to much.

Yesterday I was not capable of even going into a shop and getting a drink (my boyfriend who was up visiting had to as after I suggested we go down the street and get some milkshakes as i wanted a 10 min outting... when we arrived, I realised I was too sick to get out of the car). Yesterday at one point... I was actually crawling on my floor to get to my bed as I was unable to walk the several metres from one room to the one next door.

So im completely freaked at being forced to go to an appointment today so the whole thing is mentally affecting me. Its wrong Im forced to the point of collapse so often and I see that as a likely happenstance today, (I dont know how many floors the building has or how far I will need to walk).

The appointment is a court ordered forensic psychiatric one.... Im currently going thru the court system for something i didnt even do!!! Im stressed out as if they find me mentally unfit to plea.. Im worried that means they may not allow me to plead my innocence. i ARE innocent!!!.

(im up on attempted arson charges due to another near suicide.. as I was going to pour petrol on myself and burn myself up last year but did come round mentally at last moment so never tried to light up anything and instead left and tried to seek psych help, (then due to the situation of what nearly occurred the police were called and from there i was charged with attempted arson :( ..when I'd done nothing at all.. was suicidal but didnt go throu with the suicide at the time).

:( Im in so much trouble with things.... (i was mentally stable the first 10 years I had CFS/ME.. the lack of medical support etc has really gotten to me).

What's gonna to happen today.. i dont know.. im terrified about going to that court ordered appointment Im meant to go today.. Im far to unwell (I dont have a wheelchair or anything)... I dont feel like I can deal with it right now.. and im bound to have a fight with my boyfriend over this who has just showed up to take me. (I hate medical people as they are ignoring the CFS/ME and my situation).

Comments

Why isnt my CFS/ME specialist wrot me a letter for the court that i need to lay down!!! etc.. Why arent they considering my physically health too??? Why are i being pushed into point of collapse???? Why are i being treated worst then an animal and my health needs not conisidered.. left time i went to court I collappsed due to the POTS and that .. (POTS i dont even get treated for and no one believes me thou a previous doctor diagonised and i know i have POTS).
 
not sure what to tell you, but I hope that you got thru your appt ok......I agree that there needs to be some way for them to take your physical condition into acct with any court appearances......so sorry you are having such a rough time.......hugs
 
Sending love and strength your way. I hope your boyfriend was able to be a help to you to navigate through the courthouse and the appearance. It is so sad there is no follow up, but please take hope from all that is happening this year - things are going to be changing for ME/CFS patients soon enough. This is the year we will start to see the light. We just need to hang on a bit longer before the medical profession finally wakes up. http://forums.aboutmecfs.org/content.php?318-A-Look-at-the-Year-Ahead-ME-CFS-CFS-2011
 
Have you ever viewed a court session? It is not actually that big of a deal. The whole thing will be over in 10 minutes and there will be no major penalties even if you are found "guilty". All of this will blow over quicker than you might imagine.
 
Hope all goes well for you today with your appointment.
I know the feeling of crawling on the floor to get around...I have been doing more squatting and crawling around lately as I am too fatigues to stand up right now.

Thank goodness that you have your boyfriend to help you through the day.
 
I own a business and had to go to court over a tenant who was lying, it unraveled me too.
I look back now and wish I had not let my mind make the situation worse than it was.
I think we need to stop when we are in these situations and look at our thoughts, and bring ourselves back to the real reality.
I am sorry for what you are going through; I have been close.
The petro thing would have been so awful!!!!!!
How old are you? Get a hold of yourself; things will be better.
I will be thinking of you.
Pinky
 
hi tania ... like i heard said on a PR thread: somebody should call amnesty international about what some of the countries are doing to ME/CFS people.(not that it would help anytime soon enough for you).

you are in a tough place right now. once the freakin legal system gets hold of you, they just want more and more of you. best if you can do whatever they require now, get it over with, then disappear from them for a long time. if you blow them off, it only gets worse.

that said, medically speaking you are in a bad place as we all are, because nobody is educated enough to know our truth. can you get a lawyer who can act as your advocate now? somebody needs to help you through this rough patch. a lawyer could intercede for you with the judicial process by getting a medical professional to back you up. you can't do this by yourself. And, if you are worried about a fight with your boyfriend, it sounds like he's not the one who can do the job alone either... if he were, you and he wouldn't be fighting during this time of your critical need.. I guess just accept that he can do little things to help you , but not the big things. and god bless him for that degree of help.

now i know lawyers don't usually work for free, but you are going to have to explore how to get some low-cost or free legal aid if you can't afford it. in America there is the american civil liberties union, or the Public Defenders from the district attorney's office. I highly recommend that you speak with someone like that in your country.

so sorry this is what is going on for you now, very bad timing. Stress is one of the worst things possible for all of us with this disease. ok, best wishes to you. Please, find that legal help. it sounds like your only way out .
 
Hang in there Tania.

Try to think about what's happening right now, & not what might happen in 24 hours time. No doubt the stress & worry is contributing to your diarrhoea.

Hopefully, you have manged to get to this appointment with your Boyfriend's help, as I type this message. You are not alone. Your Boyfriend is there for you, so let him help you.

He is no doubt worried about you & may well offer suggestions which are difficult to follow (or impossible to comprehend).

Just try to sit (or lie still) & concentrate on your breathing.

Each time you feel the tension grip you, breathe in slowly to the count of 4 & then breathe out as slow as possible to the count of 7. Concentrate on relaxing your muscles as you do this. Do nothing but concentrate on the 'counting'.

As you do the breathing & counting, start with your shoulders & relax each muscle (left & right sides). Then work your way down your body relaxing each muscle group, by the time you get to your toes, you should feel a lot calmer.

It's the constant counting numbers that used to help me.

Within 3 months, this breathing & muscle relaxing technique enabled me to drop my high BP as much as 30 points in 5 mintues (at times of high tension or mental stress).

It takes practice, so don't give up if it doesn't work the first few times you do it.

Can you tolerate Imodium? If so, can your Boyfriend get some from the chemist for you. This works really well for the diarrhoea. Despite the diarrhoea, remember to keep up your water intake. If you don't keep drinking water, you will get dehydrated & the drying out of your muscles & soft tissues will make the pain & tension worse.

You KNOW deep down in your heart that you will get through this bad period in your life. You just have to BELIEVE IN YOURSELF.

Believe in your strength. Your ARE a strong person. I know that from reading your many posts last year.

When we allow terrifying thoughts to become the focus of our mind, it becomes too overwhelming to think logically & sensibly. I know as I've been there.

I used to take changes of underwear & slacks (with a small towel & soap) to work when I went through that 2 1/2 years of chronic diarrhoea back in 2002-2004. It gave me a sense of security in knowing that if accidents happened through bowel problems, I could quickly & efficiently deal with them without embarrassment.

I'm sure the hospital would have given you some psychological or counselling support. Make sure you have someone to talk to. It makes all the difference sharing your feelings with those qualified to listen & give advice.

These are also several Help phone lines where you can talk to someone & pour out your worries too (if you haven't got someone with you 24 hours a day).
 
I'm sorry :( They always seem to treat us this way. I don't know what else to say, just that you are not alone, even though it feels like it. So many of us suffer with the same horror.
 
Hi Tania,

I just wondered how you are keeping, after your recent appointment. Hope it didn't go too bad, and that you are back home safely. I understand if you are not up to writing back just yet.

Hope you can write back soon. Take care.

Love and hugs

Glynis x
 
hi, thanks for the posts. I didnt end up going, I just started crying and then choking (due to my lungs and throat still isnt good).. and was so dizzy i wasnt able to stand when my boyfriend came inside (I couldnt even get myself to the bedroom). My elderly boyfriend has health issues (high blood pressure) so at the state I was in.. he ended up collasing on the floor dizzy too. :( the whole situation is very bad for us both

I have to go now next week i think it is.

I have faecal incontience today :( .. i think its the antibiotics Im currently on still doing that to me.

Im going to the city tomorrow with my boyfriend as Im due to my 3rd or 4th session of lazer therapy (as recommended by my gyno as my screwed hormones have given me a beard.. I just shave the mow i have, but the beard is real prickly and was affecting my self confidence as it grows fast). Hopefully I wont collapse on my partner tomorrow (as he's already ify about taking me out anywhere due to my collapses, but I NEED an emotional boost (even if i do end up collapsing as Ive attempted to go out) and it does me no good emotionally to be stuck constantly home nearly always alone.

Yesterday I was emotionally quite messed up again and not myself (thinking I was going to have to go to an appointment I wasnt physically up to dealing with, ended up screwing with me mentally). to the point of waiting to die and when my boyfriend fell on the floor dizzy due to his own poor health, I just looked blankly at him and told him i hoped he'd die and then I could die too....

interestingly last night then i went into a high fever all night after that (waking then thou much weller, weller in my body and mind and with actually a little energy, enough for me to do my dishes which I havent been able to do)...

Ive noticed before that many of my incidents when i gone into bad mental stuff enough to land me in hospital.. I often have a fever at the time, (I dont thou notice fevers till they get quite high.. but many times Ived had mental like breakdowns and had my temp taken. to my surprise its showed low grade fever). Makes me wonder if some kind of inflammation in my body is affecting my brain???????

I had so many nightly fevers when i was in hospital... making it unable to distinguish between what was caused by the pneumonia and what was caused by the CFS/ME, that the doctor ended up getting the nurses to get me to advise them each time what I thought was what.
 
Snow Leopard;bt3905 said:
Have you ever viewed a court session? It is not actually that big of a deal. The whole thing will be over in 10 minutes and there will be no major penalties even if you are found "guilty". All of this will blow over quicker than you might imagine.

Ive very aware of court as Ive been back and forth to court with this case.

For yourself it may not be a big deal.. but just the travelling there alone can have me to the point of collapse and of cause there is no where to lay down where waiting for the court session to start. Due to my POTS, if the POTS starts coming in, Im at risk of unconsciousness unless I can actually lay down. Just being upright to long can set off my POTS (or being too warm.. its summer where I are). Last time I went to court I drank so much trying to stop the POTS from coming in, that I ended up vomiting out of the car window on the way there.

(I cant nowdays manage to drink enough to stop it now I have the insulin issue.. I used to drink up to 28 cups of sports drinks a day to ward it off.. but now cause of insulin issues of cause sports drinks are now out for me.. so I drink water trying to stop it till Ive ended up vomiting and are very ill.
Its a choice of being very dizzy at point of collapse and faint with also a headache and blurry sight due to POTS.. or drinking so much water Im vomiting. Last time I did that I also vomited and accidently peed in the supermarket :(

For myself it is a case of having to make choices to get my health throu doing things.. and those choices each have their own consequences. If i want to go out and stay conscious and not collapse.. shrugs.. not much else I can do)

Last time i went t court I collapsed and they had to ring an ambulance and was out of it for 5-10mins on the floor (for the time I was collapsed on the floor with seizure like activity). The physical effort of going to court (along with the stress of it) caused that.

All of this will blow over quicker than you might imagine.

This court cause has been going on for a year now!! and I even ended up in jail for a whole month due to it (as i was too ill to try to fight it in court and be travelling back and forth so I opted to go to jail for a while). It isnt something which has just blown over but instead something which has caused me a great deal of mental stress due to all which has happened due to it eg when I was in jail and collapsed, they thought I was faking it and being difficult.. and tried to drag me up when i couldnt even stand, treated me rough and cuffed me as I freaked out at them trying to make me stand when I couldnt do so and just fell down again. (I then had my head roughly stood on). (I then had nightmares for many months about jail and have no trust in the whole system. I saw others in jail too who certainly shouldnt have been there).

If they dont believe me.. I could truely end up in jail for a long time for something i didnt do. (I dont have any faith in any of the systems no more as Ive been treated too badly).

When someone is in jail.. the officers dont have access of your medical file.. so truely wont believe you are ill. You are expected to be able to get out of bed and stand at attention (something which got me into a great degree of trouble with the jail high ups aas I couldnt always do it). If the jail doctor dont back you up (and I couldnt remember my doctors name due to memory issues.. and besides I have a bad doctor).. well you are stuffed. You'll get pushed beyond what you can do and then get punished for it when you cant do what they want. (this isnt talk.. this is based on my previous experience of jail based on me choosing to go to jail for a while rather then fighting this case as I was too ill to fight it!!).
 
(all of the above I brought up in a government enquiry into disability but i doubt if anything will ever be done about how the disabled are treated in jails).
.....

I do have a lawyer... who as far as I know have been requesting my medical files from the hospital for ages!! but I think the hospital STILL hasnt passed them onto my lawyer thou the case has been going on for a year. (the hospital has treated me poorly.. with no treatment and no counselling.. the whole thing makes me wonder if they dont want to pass on my medical file).

My whole case, actually thou i didnt do it.. I was in the location I was in and nearly set myself alight due to my prementral dysphoric disorder.. another thing I havent got a doctor for but if one got my hospital file and looked at the dates i end up in hospital due to mental stuff.. its always that time of the month.
.................

I'm sure the hospital would have given you some psychological or counselling support. Make sure you have someone to talk to. It makes all the difference sharing your feelings with those qualified to listen & give advice.
Hospital suggested I see my psychologist earlier and told me to let them know if I couldnt (I told them I wouldnt be able to do so as my psychologist can only see me once every 2mths). So anyway.. i rang as hospital asked me to.. and got told what i already knew.. I wouldnt be able to see a counsellor or the psychologist before mid Fed. Told hospital that I'd rang and I couldnt.. and of cause they did nothing at all. So nope to what you said. (Thou this isnt the first time Ive actually almost died).

The issue is cause I have mood disorder and Aspergers and not depression, I dont qualify for any of the local mental health services!!!!! (that's even after quite a few suicide attempts). Cause they say my issues arent ones they treat. (I could sooo do with some counselling right now, I really know I could.. I saw something horrific while I was in intensive care, Im still reeling from, so horrific I cant even talk to my partner about).
 
update on shopping situation. Found out the situation here is thou its a big woolworths here.. thou they do do delivery, they do not shop for those who cant shop :( So that option for me is out (so its back to looking for online sites who will deliver to my country area again).

I also found out the hospital either lied to me (not wanting to help me) or gave me the wrong info).
When I asked if I could have meals on wheels (a service where meals are delivered to the home, which is at least a statewide org and something I do know is in my area) for a while as I couldnt walk far at all (I collapsed just trying to walk from the hospital floor I was on to the next floor and back and then couldnt get back up myself). They told me that service was only for the elderly.
I looked that up online thou the other day and what they said isnt true :( . (I truely think the hospital really dont want to help me, they dont care about CFS/ME).
 
Tania, if there is any way you can get it in your small town (like a government nurse who will come to your house) IV saline would help a lot to prevent the collapses from POTS when you go out. My doc (who himself had POTS) gave standing orders for many of his patients to have IV saline whenever they felt they needed it--at least a couple of bags.

Don't know how the Aust health service works (evidently not very well!) but this should help if it is a possibility.

Sushi
 
taniaaust1;bt3924 said:
(all of the above I brought up in a government enquiry into disability but i doubt if anything will ever be done about how the disabled are treated in jails).
.....

I do have a lawyer... who as far as I know have been requesting my medical files from the hospital for ages!! but I think the hospital STILL hasnt passed them onto my lawyer thou the case has been going on for a year. (the hospital has treated me poorly.. with no treatment and no counselling.. the whole thing makes me wonder if they dont want to pass on my medical file).
........................................................
hi tania i do hope it's improved some.
sorry i was away a bit. feeling way off.

good about the lawyer, but is he aggressive for you? maybe not enough. and perhaps this is where your friend can assist? maybe said lawyer doesn't understand the full severity about your condition. since you are doing your best to struggle through each hour, can your boyfriend have a Serious talk with the lawyer and relay all the details about what you have described here in your blog? He may have to stay on on it hard, for a bit until the message is received and action is more appropriate. because it sounds as if your lawyer isn't protecting you at all.

you don't have energy and health to take this fight alone, it seems... and who would expect you to ? your advocate / lawyer must step up.

best to you.
 
Sushi;bt3927 said:
Tania, if there is any way you can get it in your small town (like a government nurse who will come to your house) IV saline would help a lot to prevent the collapses from POTS when you go out. My doc (who himself had POTS) gave standing orders for many of his patients to have IV saline whenever they felt they needed it--at least a couple of bags.

Don't know how the Aust health service works (evidently not very well!) but this should help if it is a possibility.

Sushi

Hi Sushi.. i cant get the simplest things to help the CFS/ME here due to not having supportive doctors as far as CFS/ME treatments go.. it took years and years to finally convince a doctor to give me melatonin... and my B12 injections, I started all that off my own back without the support or encouragement of any doctor as they wouldnt give me any!! (I had to teach myself how to inject etc)

No way can I get Saline IV thou Im sure that would help me, (i did have a doctor a year or so ago who would of done as she actually did know about POTS, but she slept with my partner :( and hence emotionally messed me up so I dont see her anymore and she wouldnt see me now).


That is what upsets me the most.. I know many of the issues I have could be being helped some and I could be doing much better then I are doing now...instead, Im just left to deal in whatever way I can (which often involves trialing drugs which were prescribed for others or getting things and taking them behind my doctors back eg the B12... and a ton of needless suffering I end up going throu as Im not being helped).

I cant even find a doctor to aknowledge I have POTS... or to send me for tilt table testing to prove to them I have it.
 
L'engle;bt3928 said:
ME/CFS South Australia:

http://sacfs.asn.au/contact.htm

Can they do anything for you? Good luck.

thanks.. I used to be a member of this society but my membership expired last year. I do plan to renew it.

Like most ME/CFS societies sadly it hasnt much money (runs on membership fees (they keep them low), donations and by volunteers, those with CFS/ME and their families running it), so really cant do much (other then talk on phone to people... and put info on their website for us. They do do a great job with the info they put there).

Last time I rang them in regards to what help there is out there for CFS/ME around here... they said they could only recommend one CFS/ME specialist (and I do see that one but he hasnt supported me much in trialing the things I wanted to trial eg B12 injections and he dont seem to know anything at all about POTS so isnt helping me there etc).

(I are thou getting some new tests done, he's suggested soon (things Ive wanted for years actually).. so will have then some new things to possibly do to hopefully improve things. He has been good with many tests but it just seems many more aint available in Australia).

I know they'd love to be more supportive.. but its hard for our organisations to be doing things with basically no funds. (Someone from the SA CFS/ME society actually sent me a best wishes card when someone interstate contacted them about me).
 
5150;bt3934 said:
good about the lawyer, but is he aggressive for you? maybe not enough. and perhaps this is where your friend can assist? maybe said lawyer doesn't understand the full severity about your condition. since you are doing your best to struggle through each hour, can your boyfriend have a Serious talk with the lawyer and relay all the details about what you have described here in your blog? He may have to stay on on it hard, for a bit until the message is received and action is more appropriate. because it sounds as if your lawyer isn't protecting you at all.

you don't have energy and health to take this fight alone, it seems... and who would expect you to ? your advocate / lawyer must step up.

best to you.

My lawyer dont seem to be at all aggressive (she is thou very nice and I do believe wishes the best for me) ... its just that I truely dont think she understands CFS/ME at all and what its doing to me and how its affecting me. I think she's just thinking Ive got a mental issue.
I wish she was more aggressive.

My boyfriend.. just trusts the lawyer and keeps saying I dont need to worry (he's a mr positivity...to the point his positivity stops him from being realistic at times).
 

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