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Keep bursting into tears since yesterday, realised how disabled I am, very very low(63 Posts)
I have long term health problems. I met a very good childhood friend I lost touch with yesterday and keep crying since. I was young full of hope and life, now I am a shaddow.
I have time, not much else. Waiting for God.
How awful for you OP, my heartfelt sympathies for all that you're going through.
OP is the therapeutic relationship with your psychologist damaged now- are you able to trust them if not can you see someone else?
I felt suicidal several times a day for years, then the sleep apnoea was treated the panic attacks resided as did suicidal thoughts. I think there is a self destruct thing in me still, I was slowly killing myself with addiction and abuse of my body, with food, and I deep down still want to die, I just don't want to do it by one act if you see what I mean, I think I do it by slow self abuse. I had a band put in not long ago and missed the last fill and have a fill tomorrow. I don't want it, I went through an operation for nothing.
Very concerned to hear that the dentist was told about the issue with anaesthetic and didn't act on it. Did you complain? Sounds like a serious failing on his part to have inflicted needless pain.
I saw another psychologist to have the operation. I saw her to get the op as I thought it would make me happier. It did and my self esteem got better.
Then I got down after going to the EDS conference in Sept and I kind of gave on life a bit after with that and a week later as after the conference I asked the school to statement the dc, and they didn't believe me and called ss.
The school has info now and believes me now, I feel destroyed.
Have you spoken to your GP about how you are feeling? You sound so low I think you really need to be honest with them how you are feeling, there's so much going on you don't need to go through this alone. If you feel unable to talk to your Gp please write it down or show them this thread but please make an appointment and speak to them ASAP x
I was in a psych unit for six months trying to convince them that yes, whilst I did acknowledge I had a mental health condition, that wasn't what had caused me to be bed bound for months.
I think especially if you have an invisible health condition (I have a selection!), then being taken seriously is a nightmare. Once, however, that first barrier is broken down, it tends to get easier to be taken seriously. Doesn't make it early stages any easier though.
Also understand what its like to speak to someone and suddenly go "Fuck... This is my life". I'm 21, so most of my friends have either completed their degrees or are in their final year at uni, and sometimes just seeing their facebook updates makes me want to scream.
I promise you though that the days when you feel like this get less frequent. I still have times where I just want to cry because its all so fucking unfair. But now, five and a half years in to being so ill, I've accepted it. And once you accept it, all the energy that you put in to fighting it you can employ into finding the good that you still have in your life. I know that's so hard to hear when you're in a bad place. And I know you don't want to accept this as being your life, because, really, who would? Tonight I'm having a very low night, and that's okay. I'm accepting I'm low, and that the reasons for that are very rational; I'm sick of being in pain, and sick of having to consider my mobility so much when I should be more concerned with which club I fancy going to this week. The real break through with how down my illnesses got me was when I accepted them.
Do know how you're feeling. And can relate to all your experiences with the medical teams as well. And its a pile of steaming crap. But it does get easier. Promise.
MissHighwater I never complained about anything officially. I am going to complain about school.
I told the GP I felt broken as I needed letters to prove kids have what I told school.
I just can't take being attacked well meaning or vindictive either.
I dont know if this is any help. When I met my OH he was very fit (ex army, champ boxer). We were young and thought we had our lives ahead of us.
He was dx with Multiple Sclerosis 10 years ago. He is still my lovely (mostly) OH even though he shuffles and needs a scooter to get about.
Our lives have changed totally (we lost our DD too).
But I still love him and can see the person he really is behind that shite condition. Our kids adore him too.
It must feel like it is all about the EDS right now for you. You are still that same person inside. Its just so hard to find yourself amid all you are having to deal with
'invisible' an hard to dx conditions are crap aren't they? If I had a quid for every time OH was told 'black men do not get MS'
You sound so terribly down. I wish there was something we could do. Are there any groups for people with longterm conditions in your area? Somewhere you could meet people who know what it is like for you?
MrsD, I know you through another forum, never said anything, you were on 60mmo?
The first dx I had my exh started an affair weeks later, a few months later the dc got that dx, he announced a day later he was leaving and I can't go into it all, it was acromonious, he told lies and he and cafcass accused me of mounchousens by proxy in a defined contact court case, he is no longer in dc life. The dx has changed since to EDS.
Nobody loves us no family or friends saw past the illness. I couldn't tell people about mounch thing, they didn't get why I was in a state so ill and so distressed so long. Lots of people were cruel and didn't want to find out.
I tried to tell a friend a year later, she was all assuming, I didn't get a chance to explain why I sent a distressed text, she misunderstood, she said look I am sorry I forgot your birthday I had a miscarriage. I never got the ability to say it wasn't about a card and explain she sounded like she didn't care or want to know why I sent a distressed text.
Sorry mrs I dont know what 60mmo is.
I am sorry about your ex. It is very common for marriages to break up after a dx. It is not your fault you ex is a twat.
I know you have had a horrible time. Are you still seeing the pysch? Can you use that time to work through all the terrible things that have happened now you can prove that your illness is not psychological?
It sounds like you need someone to listen to you and support you. After all those people judging you it is time for a bit of tlc
Oh maybe that was someone else, sorry.
I just wish he could have been honnest and not cruel kicking us when we were down.
I stopped seeing the psychologist a long time ago, I wouldn't go back there.
At the conference there were private psychologists who understand the condition, I do plan to see as a family and individually, money is an issue, as school demanding from GP details of how EDS effects the dc, for medical plan, GP was unable, GP confirmed dx, have to pay to get prof to do detailed report for school, it is all my savings.
Oh mrsjrewing Im so sorry
You have been so helpful to me on here, I know I'm just words on a page, but I really feel for you, & I'm sure you are such a wonderful person.
I could have written most if what you've said on here. EDS is the gift that keeps on giving, that keeps on destroying your life & gives you no time to grieve for yourself & your hopes & dreams & body. Living for your children is all very well, & having to do that keeps you alive, tied to this existence... But it doesn't help beyond that, keeping going cos you have to is shit, I'd love to keep going cos I want to.
The only thing we can do is just try & hope something in our lives changes, or something you do finally makes things a bit better... I know it's shit, treading water, I wish I knew what else to do, what else to say
Hi, how are things with you? Have you got a reliable pa now?
Spotting this Double means you got an update on the school issue, I couldn't find the old thread to update. Got the GP letter to School last week confirming dx. I had a meeting with school and sw before the end of last term, I was never so angry, the juniour school had the first dx and every school trip etc had medical info on, for them to say it is the first they knew and to call ss before asking me for medical evidence and to accept nothing but GP letter, not accept physio or hospital letters. The school ringing ss querying my mh and does the dx exist destroyed me, the humiliation, the discrimination, the hurt and fear they caused.
Hello there, still on the search, in fact just plucked up courage to fire someone who didnt seem to have many 'boundaries' (to put it nicely).
but it's getting better as stumbled upon a good agency who aren't a care agency per se but a bit of everything agency so am using a couple of people from there now.
Ss are rubbish & for their next 'let's beat the worthless cripple' stunt they are starting to lie about my mental state & behaviour... At least they are being so incompetent they can't even get that right & it's totally unbelievable, but it's grinding me down & feeling bloody awful myself. It's a cruel thing to do & it comes from ignorance & prejudice about physical disabilities.
Not sure I can continue to put myself through it, each battle takes everything I have & I never get chance to put anything back before the next awful thing. All caused by people, all avoidable. Unfortuneately I need the money they give/ hours care to just scrape by.
Can't live with it, can't live without it. Feel very trapped & hopeless.., hence my empathy with what you are saying. It's shit isn't it, I'd do anything for this to all end, but I can't do anything to stop it all.
God life is shit isn't it - sorry I hope someone else supplies some more uplifting advice
'destroyed me, the humiliation, the discrimination, the hurt and fear they caused.'
Yes, I get it. It's what people do to us that is killing our spirit, not the illness itself (though I bloody hate that too).
I wonder if anyone gets through this, gets to the other side of all the shit? Looks back & says, am happy now, it's ok. I wish I knew people who had, it would help I think. I talk/ read logs of stuff people write & I've not found anyone much further than me on the journey. Surely they must exist.
After the school incident and meeting people at the conference I was put in touch with others having issues with those misunderstanding EDS. If you want to be put in touch pm me. I have told them bits like here, they are going through hard times too, so keep a lot back.
It helps to hear from you it is truth.
You know you are right it is people destroying our spirit more than EDS. Friends, family, medical people, professional people, they damage us so much then scream "looney" because their type damaged us and left a mark.
They don't understand the brain fog, the memory and organisation problems, the fatigue, the fatigue, did I mention fatigue? never mind the sublaxions, dislocations, arthritis, pain etc. They see someone who looks ok on the outside.
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