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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.
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.
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.
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.
Thinking of you, thumping head so can't post much but just wanted to check in with you & see how you surviving
Bless you, hope things get easier for you, remember you are strong, youve dealt with a lot so don't be hard on yourself.
No tears this morning. My eyes are very swolen this morning.
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
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.
Night double, don't forget pm me if you want to join the fb group.
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.
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
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
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.
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.
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.
'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.
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
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.
Hi, how are things with you? Have you got a reliable pa now?
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
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.
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.
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.
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