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"I was disabled by my mind"

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firemonkee57

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Joined
Mar 23, 2009
Messages
8,222
http://news.bbc.co.uk/1/hi/health/8037663.stm

An interesting article about a woman's experience with conversion disorder.

Although i have not experienced psychological factors being expressed as physical symptoms in such a dramatic way i do know from my milder experience how it can and does occur.
In my case becoming acutely stressed can result in a physical reaction that involves the presence of flu like symptoms such as feeling feverish,achy,tired and generally out of sorts.
 
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stanley

New member
Joined
Sep 13, 2010
Messages
1
I have a physical paralysis to my right side of my body, its awful, life on hold.
 
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davalay

Guest
The physical effects for me are much more acute and limiting than the psychological effects. Stress isn't the precipitating factor for me, but migraines. I am now so disabled I need a wheelchair to get around. However the only psychological factors for me is slight dissociation at times when I know someone has asked me a question and it takes a while for me to formulate an answer.
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
my physical symptoms have put me in a wheelchair 24/7, my legs just do not respond to what my brain is telling them to do! my hands are effected too, i drop loads of things every day, struggle to grip pens. preparing veg, drawing,sewing and fastening my clothes/shoes are things of the past! i have pain almost everywhere and get sooooooo tired that one or two days a week i hardly get out of bed! my arms spasm every morning as i wake up and it lasts for around an hour each time, they also spasm when i get over tired too, so nights in the pub are a thing of the past too waaaaa!
I notice that i dissociate when asked a question too, i know that someone is talking to me, know i need to reply, but have no clue as to what they just said, friends have got to know me and laugh when i look blankly and say hugh sorry what did you say!
I have recently began to get really heavy menstral cycles with excrutiating back pain a few days before, but am not sure if this is part of DMD or something else. my GP is looking into it!
swallowing is difficult at times and i get a kind of lump feeling at the top of my throat, i get monster indigestion/reflux which is being investigated too
my immune system is very low too, i had 2 chest infections, 2 ear infections, full blown flu and a resistant UTI all in the last 2 months!!!!
i feel like a hyperchondriac, but know i am not, i never visited the doctors for over 10 years, not once, so know this is all part of my condition at present.
 
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davalay

Guest
omg yellowted, you could be me. everything you say is what happens to myself. what medication are you on? for me the best pill is baclofen which brings 90% of my spasms under control, with diazepam controlling the muscle pain I get due to the spasms. When I was in rehab, the nurses suggested, as I don't want more kids' to get a Mirena coil fitted. My symptoms don't flair up with my period but if they coincide god do I take it bad. Anyway got as coil fitted in November. Still have bleeding, which is part of getting the coil, but haven't had a 'period' since then with all the associated pmt, etc that goes with it. Not a cure but another complication out the window. The swallowing problem was one I only found out about recently. I have had throat problems since this started but as it was relatively minor compared to other symptoms, never ever mentioned it. Now I know its part of the disorder. My speech also goes if I am bad, because my brain and vocal chords stop working together. Do you ever have occassions when it feels as if your brain explodes inside? It is hard to explain but at times, if I force my limbs to move in a 'natural' way my brain does a 360 degree turn inside my head. I have to wait for my brain to click back into place before I can attempt natural movement. The OT and physios taught me loads about how to help my brain talk to my body after a crash which now means I can at times use a stick to walk in the house instead of destroying walls with my wheelchair all the time.
 
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davalay

Guest
hey yellowted, just read through the other posts and you mention your eyes and speech in them - again exactly like me. in fact my eyes are so bad I can't watch tv any more. how about sounds - I am really sensitive to any noise, even a clock ticking can set me off? The reading and writing thing I hadn't heard of before and I don't think Jon Stone has it listed on his website (the neurosymptoms one in the sticky). May be an idea to drop him an email - there is a place on his website - and ask his opinion. He is brilliant at replying, sometimes immediately but no later than the next day. read through the stories there as well and see if anything else sounds familiar - I am the one posted as Gayle (my real name!).
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
omg devalay, are you saying i am not the only one with all these symptoms and that i am not mad??? i cant believe it after all my efforts to find someone who has actually got experience of what i am dealing with you come along and prove i am not alone in the world!!! THANK YOU XXX
I am taking spiriva, beclometasone 250 and salbutamol for asthma, pro banthine for hyperhydrosis, cetirizine for allergies, and co drydamol for pain (not that they do much, they only reduce it to a bit more tolerable level but it is the strongest thing my doc will prescribe!) I am allergic to some meds like serotonin re uptake ones so they are very wary of trying psych meds on me! I would love meds to stop the spasms, then i may have more energy left to enjoy life(go to the pub of an evening(not that i drink alcohol as it makes my spasms worse the next morning!!!!)
my head seems to do somersaults every morning, feels like my brain is in a tumble dryer for the duration of the spasms(usually around an hour) i try to stop them but it is impossible, they gradually lose their strength until they are more like constant twitches, at that point i can kind of co ordinate to do things if i get the timing right, until after an hour or so they stop more or less with only a few twitches over the next hour or so before they disappear for most of the day returning only if i get over tired before i get in bed! I could understand them if there was a trigger which could be avoided or controlled but it seems the trigger for my spasms is actually the waking up procedure!
Wow a professional who knows about these disorders and who actually responds to emails I am impressed!!! I will definitely email him, Thank you for the tip and the coil one too, i will talk to my doc about it.
do you feel queesy? i do all the time, it is a weird feeling, like i can't work out if i feel queesy or hungry but feel it even after just eating so think it must be queesy!
noise is a weird one, i can't sleep if it is quiet, but during the day if i am in a quiet place or trying to work on the computer every little noise seems to effect me (and my talk typer).
My care co ordinator thinks i still want to return to work, i can't think of anything worse at the moment.... i worked as a preschool nursery teacher, all that noise aaaaagggghhh noooooo!!!
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
Hi Davalay, I am just wondering, have you had your home adapted by social services? I keep being told they can't apply for a DFG (disabled facilities grant) to adapt my 2 storey house because the dx is one which is not classed as long term substantial! I keep being asked if i would consider selling it and buying a ground floor flat... no way. go from living alone in a detatched freehold house to paying ground rent to have people living above me!!!! if i was to sell i would opt for a bungalow, but really do not want to move from the home i have occupied for 18 years, where my late partner was born and died. ok there are some sad memories for me here but there are even more happy ones! I love my home but hate having to struggle moving around it.
 
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davalay

Guest
Hi yellowted, my local authority has been really good at supplying equipment in my house, i.e. tracking hoist, specialised commode/shower chair, pads for incontinence, hospital bed, 2 chair lifts, electric and manual wheelchair and I get support workers 4 times a day although I am going to try and apply for direct payments to take control of my support. Unfortunately they are rubbish at adapting the house and I had to put in an accessible wet room, change my kitchen and put external ramps in myself - this used up all my life savings but was worth it as before then it had been six months since I had had a shower. I know different authorities concentrate on giving different support so I guess its just your luck where you live.
I also need cetrizine for allergies and am on a gluten, wheat, dairy and additive free diet - and my restrictions are getting worse. Head in a tumble drier and nauseous, oh yes. The baclofen I mentioned is specifically for muscle cramps like you explain. Before I started on it I was in spasms all the time, but within half an hour of taking the first dose, my spasms became much more controlled. If you can persuade your doctor to put you on a small dose, maybe even just first thing in the morning, it should reduce the length of time you have spasms for. For pain I have paracetamol for the constant headache and tramadol for the muscle pain. It doesn't take it away completely but anything stronger and I am doped out my head. I can't take the co-s because of stomach problems.
For two years I always assumed I was going to get better and be like i was before FND hit me so I always made plans to go back to producing videos - always for a few weeks later when I would feel better! Now, I realise there is no going back. I have to live with this disorder so I have had to reorder my priorities. I spend most of the day working on the computer and am amazed at how everyone with this disorder have been so shockingly treated by the medical profession. I really want to campaign rigorously on behalf of us all. My mum and I have really good contacts up here in scotland and I think Bonica has good contacts down south.
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
hi Davalay, my local authority are crap at giving any aids/adaptions, it took 6 months to get a wheelchair though i did get a bathlift as soon as i got out of hospital (i think the hospital said they would not let me home without one!) and i only got my half a ramp in the summer a year after the first wheelchair! i have been signed off adult services twice because i dont have a physical dx! i have had to fight hammer and tooth for every little thing i have been supplied with, even had to go through my local MP to be referred to the incontinence service! My OT actually told me i need a new bed and asked when was i going to buy one but never offered to suppply one! i still have the old bed, as i do not see the point buying a new one when i will only break it like i have this one because i have to pull myself from the floor onto the bed on my own because how i come upstairs means i am at floor level and do not have the strength in my arms to pull myself into the commode chair they supplied for my PA to transfer me to the bathroom!
I do however get direct Payments, they are fantastic, just remember that you become an employer so are responsible for paying not only your PA but her tax and NI contributions aswell as Employers tax too! i get around this by only employing self employed PAs! you could also use an agency that way they pay the tax etc, and you are more likely to get a replacement if your regular one is ill, though agencies around here are in the dark ages of only providing in the home care else they wear a nurse like uniform to take you out though i think they are being encouraged to offer out of home care in normal clothes!
DP means you can choose what times your PA comes and goes, what she does, how she does it etc i was even allowed to get this laptop and a holiday from mine! the key thing is to get your support plan right, if you write you need support to go to the bingo once a week for 2 hours then that is what they budget for, where if you write you need support to socialise within the community then this allows you to go to the theatre, out for lunch, go to bingo etc so it is a much more flexible plan, put in things like need help with preparing meals as you can not have ready prepared meals due to allergies, with that comes daily cleaning of the kitchen because you drop/spill things and can't clean them up, incontinence means you need daily baths/showers which you need assistance with, i have swimming in my plan as it is the only exercise i can d, you don't have to be able to swim, just bobbing in a pool is relaxing and moves your muscles with the movement of the water, it also relaxes my muscles so they move easier. basically you can put in anything which will improve your quality of life as long as it is lawful and is not gambling (you can put in for assistance to get to the bingo hall,to get your tickets, pick up your pen when you drop it etc but not for the cost of the tickets!)
where social care is designed to provide what you need to survive, DP is designed to allow you to choose how you wish to design your care package so you can live a life of your choosing. don't forget to add in your cleaner, and that you need to keep a reserve just incase you have to pay more for an emmergency PA if yours phones in ill, or you are ill and need more care one week.
I have been helping my local council to develop the assessement form and 'points mean prizes' scales, so am well up on what to put in both the self assessment questionare and the care plan, so if you need help with yours then just let me know.
I think we need to campaign, definitely, my local MP Vince Cable would get involved I am sure as he is appauled at how i am being treated, and i have great contacts within the council, personally know the head of M/H services in my borough, and great contacts with our local independant living scheme which is user led and well integrated in the baloon of PCT, council etc. so yep i have some strong contacts if they are needed!
I have wheat/gluten, dairy, soy,tomato, and celery allergies and think eggs and/or red meat is the cause of my recent tummy problems! I am also allergic to sticking plasters, micropore tape, some allergy tablets (yep thats a bummer!) and some anti depressants, all forms of pollen,perfumes, sprays,smoke, hair conditioner, deoderants and washing up liquid. even elastic gives me problems ! I know, i am a walking allergy! I have to be so careful of my environment and what i eat but if i just had these like i once did long ago, i could cope, it is the added complications of everything else that makes life extremely difficult for me!
have had a busy day (took myself to Ikea, on scoot, train and tram) so am realy tired now, so night night, sleep tightX
 
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davalay

Guest
Thanks for the info on DP yellowted. I have copied the relevent paragraph onto my computer so I remember to ask for all the social things you mention. My SW is on holiday this week but next week she is coming up to do a new assessment prior to seeking DP funding so it is good to have all the ideas. Anything else you think would be useful please let me know.
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
you have the right to request a copy of the self assessement questionare before she comes to complete it, insist on it, that way you can plan your answers and make it personal to you. she should only write what you say, better still fill it in yourself, afterall it is a self assessment not a SW assessment! the new assessment is probably sio she can pre fill the SAQ before visiting you, do not let her!!!! it is your views of your needs that need to be on it not her interpretation of your needs! send me your email address and i will send you a copy of the one i an working on at present for myself! are you being assessed under mental health or physical health? mine will be different from yours as each borough/area have their own locally produced form, but it may give you some ideas of what to put.
 
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jo..b

Member
Joined
Oct 23, 2011
Messages
12
I've been reading this thread and nodding rather a lot, everything I've read is familiar to me, I've had severe allergies since 1990 I notice lots of use have allergies I've been in bed for almost a year
now looking back on my life there have been a number of crashes, I got access to some medical
summary that was on my file, it said in 1988 I presented with migraine one sided deafness and
unable to speak, the doctor had wondered if it might be dissociation, I was never told anything
other than I had a migraine.
Gayle I read your stories on the other site and was very excited to try the tip about someone
touching your legs, we tried it and it works! so thank you very much for that. I've found that if my feet are touching the end of the
bath that gives me some power back in my legs,
My memory is terrible but I remember seeing that someone's from the east midlands and wondered if they shared the same hospital/ consultant as me, I'm Nottingham way, near ikea.
I hope to get to know each of you and share tips and ideas.
Jo
 
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