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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 want to be that person with hope and a future, I have neither, I exist so my children have a parent. I don't want my future or theirs. I don't want the guilt anymore that it is my fault they have this and to see them suffer. Our family rejected us mine and theirs one way or another. I know they are not worth a tear, I just would like for us to be loved.
We are listening, you sound heartbroken
there is a circle of love, between you and your DC's. it might only be those people in the circle, but its enough.
Please be strong
I try to be strong always. I told my friend about the nightmare that is my life past six years. She was open mouthed. I knew her from 12 to about 24, she knows me and the people.
These dodgy genes caused so much trouble, I hate my body. If I was normal my dc would be. I wouldn't have been disbelieved over so many things, harmed etc.
I am upset I was misdiagnosed, I wasn't believed about my symptoms by EVERYONE before diagnosis, I am upset when I was physically ill with sleep apnoea and telling a psychologist my symptoms and main diagnosis she let me down too, I am upset with diagnosis for me and my dc, I am still not believed by some people and twice I had to prove I told the truth and no aplolgy. Even the dentist ignored my diagnosis and warning about anesthetics not working he didn't believe me and I was fine with dentists before now i can't go.
I need a checkup with the dentist and am too scared, i felt so much pain him doing all that work with no pain relief, crying putting up my hand and being pinned down unable to move.
I am a bit confused.
You are saying your GP either misidagnosed you or late diagnosed you.
Your family didnt believe you.
Your psychologist didnt believe you.
And your dentist doesnt believe you.
Have I got that right?
At the dentist, if you have a check up, you may not need a filling.
That would be all right wouldnt it?
Could you try a different dentist, and ask him if he has any different anestetics that should work?
I was misdiagnosed and late diagnosed.
My family don't believe me, my kids do they have it too.
The dentist didn't believe me or the Professor, he only believed tha anxiety bit not the bit about locals not working.
The psychologist let me down I was diagnosed with the genetic condition when seeing them, then after with sleep apnoea, I told the psychologist my symptoms, I feel let down by the psychologist as my symptoms needed respiratory medicine not a psychologist.
I don't have much faith on the medical profession or authority figures the past few years, I was physically ill and they made me iller, I needed oxygen and sleep. They made mistakes. I only trust the professor who diagnosed me and his team.
I may be wrong but I think there may be several issues here.
I normally say in these circumstances to find the root cause.
But you may have several root causes.
And they may need to be talked about 1 at a time.
1. GP missed diagnosed and late diagnosed you. That is ad. Unfortunately that can happen sometimes. Do you now see a different GP. Did you complain about the first GP, though sometimes these things do happen, even with GPs that are very good at their job.
2.Your family dont believe you.And you say also rejected you. Doubly sad.
3. Not sure who the Professor is. Dentist, I wrote about that just now.
4. psychologist. Maybe he/she was given the wrong information.
5. Your conversations with your friend. Yes, that is sad. Has your friend got children too? Sometimes there can be quite a difference between the lives of a friend with children, and those without.
Which of these points do you want to talk about first. Which one is the most urgent?
OP I too was misdiagnosed before finally getting diagnosed with a genetic disorder, and the hardest part of that was that people didn't believe me either. 2 years on and it breaks my heart to think people could think I would be capable of doing such a thing- but now I know that this says more about them than it does me. The same goes for you OP I'm sorry that people have not supported you the way you deserve and I'm sorry how much this is affecting you- please be strong OP x
Yes Bilbobaggins, do you know me?
The friend has very young children.
She described me at various points of the cinversation as "you were always sensible" "you were a hard worker, when I was studying".
When I knew her I cared about myself, I had a life of hope then.
Not as far as I know! Have a friend with it and the thing about dental anaesthetic not working struck me. Her dental notes warn that she bites!
I know it is unpleasant but you cannot help it, and the physical symptoms are enough trouble, so I wish I could think of something that would help you feel happier.
If I was sensible why is my life awfull? I did the right things and it all went wrong.
I wasted what little health on friends and family who didn't deserve it.
I am also upset about being so thick now due to symptoms. I was once cleaver, I was once nice to look at, a nice person, fitish etc, now I am a thick useless slug.
Wishfull, sorry that happened to you.
I am not annoyed at any GP, I saw a few at my surgery and loads as a child it was no one person in particular.
I am sorry things have gone wrong.
Do you have time to yourself to do somethings you want to do?
No advice, but I am dealing with the same thing. Understand how you feel. x
With regards to the dentist he had a letter from the Professor who diagnosed me with comments about anesthetic, he ignored that and only took in the anxiety bit.
The psychologist did discuss my sleep in detail with me, she had no interest ever in discussing my new diagnosis when I was seeing her, it was ignored, as was my concerns about my sight as if it wasn't real. It made me feel I was inventing it, I wasn't
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.
Oh yes, the fatigue, the aching miserable inability to do anything without needing rest rest rest & more bloody rest. I miss my brain too, it doesn't make it better when people say they don't notice a big difference, as I limit being with people & cover up & pretend.
I know people who seem to have it a tiny bit better sorted than me, but not anyone who has made it to the other side. I'd love to hear a proper happy ending story, not a 'kind of keeping it together but still walking too close to the edge' story! Ah well.
Sorry I hope I haven't hijacked your thread. Good luck with sleeping, am off to down some drugs & hope for a better tomorrow xxx
That sounds so hard op.
I often think the 'walking disabled' have it the worst in some ways as people don't appreciate how bad it is.
I've struggled all my life with anxiety but nobody can ever understand unless they've been there. I struggle to understand!!
Sending you love xx
Bridge, yy Anxiety is not easy to live with, mine is managable now since CPAP treatment by the respiratory department, the continual panic attacks were awfull, I still get them just no way near as chronic as 6 months ago.
Night double, don't forget pm me if you want to join the fb group.
I have CFS / ME, PCOS, BPD and suspected endo and fibro. Quite a collection. Also SPD left over from pregnancy.
Its bloody hard work. An old song lyric always comes into my head; "I'm sick and tired of always being sick and tired".
I can't say I am completely happy now (battling my way with the BPD currently in a hope to change that) but I am happier than I was. Trying to look at things in a different light has helped me dramatically. If it wasn't for my health conditions, I wouldn't be the person I am today, and I am beginning to vaguely like that person. Also, finding little bits of the things you wish you could do. For example, I'm not well enough to work full time, or even part time, and doubt I ever will be. But I do run a breastfeeding drop in every week for two hours, and I do cover my friends shop for the odd day if he has meetings. Four years ago I didn't think that would ever be possible. I suffer for it afterwards, but its worth it.
Its so hard, and I know exactly how you feel. Get it all out on here, there are (sadly) many of us that understand.
Big gentle hugs.
I have PCO and endo too, my endo is very sore and I get bad pmt from the PCO hormones being so ott, I am pmt at the moment axtually probably why I am so tearfull. The female hormones effect EDS too.
They told us our fatigue and pain is similar to cfs and fibro.
Sorry you are suffering too x
How are you feeling today OP?
No tears this morning. My eyes are very swolen this morning.
Bless you, hope things get easier for you, remember you are strong, youve dealt with a lot so don't be hard on yourself.
Thinking of you, thumping head so can't post much but just wanted to check in with you & see how you surviving
My head was thumping from crying last night, hope it goes for you. I only cried once today. I don't know why, I go from feeling capable to feeling needy, cognituvely, emotionally and physically. Maybe the brain gets squished about and goes back to normal in me like in Chairi as I am not consistant at all. I am so forgetfull and disorganised.
Hi, I just wanted to comment about understanding where you are coming from with this feeling.
I feel like I have a life sentence with my illnesses and have had people try to convince me it's all in my head/ignore symptoms. I am a smart cookie, and I do understand about psychosomatic symptoms, and I do agree that stress makes everything I suffer with a lot worse, but it's not what caused it to get there in the first place, so I wish they would respect that, even though it's an unusual case which doesn't show on blood testing (arthritis) and the pain is there when it shouldn't be (kidney damage).
I mean, I get GPs pulling that "is she drug seeking?" face when I've seen consultants who have okayed treatments long term, and told me to request as and when I need diazepam, and every time I go back to say "nope these painkillers don't cut it". I would rather not be pumping myself full of medications thank you very much, I'm not a drinker or a drug taker unless it's entirely necessary. And just because I have mental health disorders does not mean you can take my physical health disorders any less seriously.
Fighting to get my DD diagnosed too, with a behavioural condition (in my mind she has ADHD) and I know I get that, is she making this up scepticism from some people. Except that when I got a carer and she came in to our life long term, she saw it too. And her teacher now agrees with me. Imagine my heartache when my ex-DP mentions they are watching my DS for signs of ADD. Conditions that people like to believe don't exist, or are naughty kids or bad parents.
Sometimes I lack the strength to go on. Then I nap, and have to pull myself back up again to keep going, for the sake of my kids.
Sorry you have suffered to.
Well ss closed the case. I felt a weight was off me.
Then I got a phone call from GP and then a copy of a letter school sent GP.
I simply do not understand that school at all.
I feel horrible again, they still do not seem to believe me . I feel persecuted for being imperfect and having imperfect children.
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