I ~hate~ This Illness

[Becca_7706]

I had this illness so much. If I could get it round the neck I would *throttle?* it. I would.

So I blacked out 10 days ago and damaged further my hand with RSD in it. That week I also heard my jobs finishing and my physio will not treat me anymore as I can't do the exercises without blacking out so treatment only when no syncope. She even said I didn't have proper EDS because my joints didn't flex enough.

So back to my hand. I went to A&E had x-ray shows bone in bad state but no break and am supposed to go back today cos still in loads of pain and have another x-ray done - thing is I'm scared to. I've had some mental problems during the last week and ended up totally losing it on Wednesday. I ended up shrieking and screaming down the phone at the 'crisis' team - it was really scarey I've not lost it like that for *years*. Why? They told me I cannot have any help or support for my mental health because it isn't fair on those with 'real' problems. I'm wasting their time wanting help with coping with my physical health problems. They also told me that Profs Mathias and Graham can definitely cure me but are refusing to. They said they have the proof. That if I tried harder I would be fixed and free of pain and syncope and could then recieve mental support. And I went mad and lost it. Potentially I could be prosecuted for what happened that day. It was that bad.

So I no longer have any drs. I've recieved a letter saying prof wants to see me again, but I don't know if that will happen now cos it was dated before I lost my temper

And it's all because of this STUPID illness. I hate drs and everyone right now. I keep bursting into tears and picking fights with people. I really feel like I'm going mad. Everything is going wrong and everytime I ask for help I'm told 'No. Fix your syncope first'.

Well shucks why I hadn't I thought of that?????

Two questions...

Have you been told 'Fix your syncope first' and told only then you can get treatment for something?

and

Am I really going mad????????

[willows]

Becca .............

calm down , take a deep breath and sit yourself on a chair with a cup of coffee and stop thinking that your life is so bad that your loosing the plot , we all loose the plot at sometime with pots .............welcome to life.

Yep, I know I sound angry with you ...........but I'm not just want to wake you up , shake you up and bring you back to earth .

Do you or any of you really think that after 35 years ++ of this awful condition I haven't lost the plot ???? shouted , screamed , thrown things ( ooops ) and done a lot more that I am not proud of in fact ashamed of if I really sat down and thought about it , er .

Look girl, you have the ear of Professor Mathias I've been written off by him , to old , to far gone to do anything with , thats me , brush her aside so that the hospitals will look good helping all the sufferers , not look bad as they cant touch me with a barge pole , and what have I done ..............nothing , so what I'm still here , laughing at life's stupidity and still smiling at the world.

Go to him and apologise , sit down , look him straight in the eye's and tell him that you cant cope , that you are afraid of whats happening to you , be honest , dont try and do the 'tough girl ' with him , if you tell him the truth and as I see it , you are a young person with a lot of problems that are all mounting up and getting on top of you and blaming your condition for it , then getting angry with yourself for having the condition ...............you didn't give it to yourself , no one gave it to you , you didn't catch it .....................life happens girl and you have to make the best of what is given to you .

Hey, dont get me wrong , my life is not all smiles and roses, I am in pain so bad I cant sleep , I fall , brake bones, clip bones from just opening doors or cupboards , I still sweat , still cant eat properly , cant drive at times ................but I am alive , I breath , I feel , I see good things around me and I get down on my knees and thank God for every day that I still have on this earth.

YOU will find a level that is best for you with this condition , you may have up's , downs and days you think 'what am I doing' but there WILL be days that you think 'life's cool I'm doing OK'

Talk to people , explain , DON'T SHOUT at them , talk in a controlled manner , and let them see the real you , that really scared person inside hiding ..............just like I was so many years ago.

You can always talk to me via my home email address ( do a message to me for it ) hey , I'm up most nights sitting at the computer tapping away whiling the hours away looking at all sorts of strange things on the net and writing emails to other who like me are up and awake at unearthly hours waiting for dawns first light ...........and breakfast !

Take care , your not alone even if no one has posted on here except me , sometimes people find It hard to answer posts like this , sometimes its hard to say what you want to people , but we do all care what happens to you .

Thinking of you AMI XXXXXXXXXXXX.

P. S Drink you coffee or it will get cold

[Mrs. Burschman]

((((((Becca))))))))

You're not going mad. People who go mad think they're the sane ones and everyone else is crazy!

You're dealing with a lot. That's hard. That's bound to make you want to scream and throw things once in a while, particularly when it seems like no one will help you.

I wish I could offer more, but just know that we're here for you!

Amy

[pastordari]

Oh Becca,

I've been where you are.

I have "lost it" with medical folks, mental health folks, friends, relatives, even church members (I'm a pastor.).

I have felt totally out of control and no one was helping me.

Truth is, no one knew what to do at that point.

There was no diagnosis of POTS yet.

People did think me mad, I think.

This is an absolutely horrible place to be.

I'm sorry you are there.

IT won't last forever, although this doesn't help you now.

I agree with willows.

"Put on your big girl panties" as they say here in the US, and start again on Monday.

Apologize to the doc, nurse, or whomever.

Speak in calm and rational voice and terms.

LEt them see the fear - tell them you are scared.

DO NOT ACT OUT - it distances you from those who actually help you.

Wait until you get home and break some old china or something.

I throw balls for my dog to fetch. He loves the exercise and play and the physical throwing as hard as I can helps me get the anger and frustration out.

Know you are not alone.

Tomorrow WILL be a better day.

Do what you have to do to get through today and approach things differently Monday.

Hang in there.

Love and best wishes.

Let us know how things go tomorrow.

Dari

[pat57]

Has anyone given you a mental health diagnosis?

I have to say, I've been shouted and cursed at, lots of times by customers at work. (The reASON i'M SO GLAD TO HAVE A NEW JOB!) But my point is its

not the unpardonable sin.

[Becca_7706]

Thanks for the support I was thinking of removing the post cos it was all attention seeking and stuff and I felt like I was proving their point for them - behaving like some stupid little kid. I can't contact the person from Wednesday. The receptionist has been told not to accept calls from me because of my 'attention seeking behaviour'.

I haven't contacted Professor Mathias. Mainly because I'm scared he'll say he won't see me again and his team are the only ones in RL who get how scarey this is for me and difficult to cope with alone and just how much it hurts my drs being this way and they have blatently ignored him too. I can't bear the thought of him discharging me too. My friends get upset, even the vicar at church gets upset (which is diffiuclt for me because I could do with some pointers for my faith with what is happening right now.

I have nowhere to turn and it is doing my head in.

I mean I have my diagnosis now. From one of the top people for the illness. I expected the attitude to stop. I had mistakenly thought that the psychiatric clinic were behind me helping me with my physical ill health and have now discovered that since prof has written saying it's physical that they were only seeing me because they thought I was a liar (and incidentally had told other drs the same thing!!!!) and now it turns out I'm not making it up I'm out the door. I'm still battling depression and now my PTSD has come back too (stress and feeling trapped by everything has caused that) but now it's sort it out yourself you are physically ill and not our problem.

To cap it off 4 hrs in A&E today to be told no fracture in hand just try harder to make pain and syncope go away. I cried. Got really upset (no yelling this time tho) and he said I need to sort my drs out and right now I can't. As pathetic as that sounds (and I know it is pathetic) it's for a very simple reason - I need my energy to hold myself together right now and try and keep money coming in as long as I can.

Willows thanks for the PM. I'll reply asap.

Becca

[morgan617]

Becca, I am a reactionary person and have said and done things in frustration I am not proud of. It doesn't mean I didn't mean it....it just wasn't the best thing to do.

I suggest you send the Prof a note explaining that this illness is taking it's toll emotionally, and you reacted badly to these people. My guess is, he is aware that this illness affects our moods a great deal and will have more understanding than you think.

Since they won't take your calls, you can send a short note to the mental health place and just apologize that way. If you aren't ever seeing these people again, in the long run, it really won't matter, but they should appreciate the effort you have made.

I can't imagine that any mental health person would think you wouldn't need help learning to cope with a chronic disabling illness. I don't live in the UK, however and have no idea how they think. You can't undo what has happened, but the best you can do is own up to any part you had in it. Not to anything they've done, just your part. Send it certified, so Prof Mathias can see you did make an effort to make amends. Good luck, and I hope your hand feels better soon. morgan

[Maxine]

Becca,

I just wanted to send you a hug, and a little support. I know you must regret your reactions lately, but you can't turn back and change what is already done , so try to fix it and move forward. Don't feel alone in this. There have been times I wanted to choke some of the obtuse and obnoxious medical professionals I have run accross.

You must edit yourself before you speak or get upset. Hold on to the doctors who are treating you with respect, and any medical professional who is not, conserve your energy, and think of a solution.

I fully understand your frustration, and how it would bring you to this point.

You must take care of YOU! Be careful to not set yourself up in a bad position by acting out your frustrations, and not receive the proper medical care you need.

HUGS, and best wishes to you. I totally understand your frustration.

Try to keep a good dialogue with your doctors, and if they are rude, dismissive, or just ignorant of your needs---move on----keep trying. I'm still trying to get in a good place with that. I'd say I'm about half way there--- .

Maxine :0)

[Becca_7706]

I have written to Professor Mathias. It wasn't the greatest email going but I knew if I left it much longer I wouldn't bother. I explained about last week and asked about the whole thing about how I can be cured etc. I am trying to not 'act out'. It's really wierd because I ~never~ have before.

Anyway, feeling exahusted right now (looong day) I just wanted to say thanks for helping me not to feel so alone. Once I can 'get a grip' I can maybe look into finding some support. The difficulty here is support for physical illness isn't on the NHS so you must pay (and I can't) different places have different policies and considering just how much this has been effecting me I think they may consider a more supportive approach for me if I can get them to see I'm not doing this for attention.

Becca

PS Thanks to those who have sent PMs!