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Posts posted by willows
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Thank you all for your support it really does give me a boost. Just woken up from my afternoon sleep, I have to have a sleep every afternoon now or 'what comes around, goes around' and by tomorrow I would be in big trouble and not able to get out of bed ( how unusual)
Tearose; I stated my menopause in Jan 2006, they have been testing me every three months for years as they where convinced the sweats was the change of life , given that I'd had a hysterectomy and lost an ovary. But all was 100% until Jan when I went not onto premenopausal......full menopause in three months, I was so ill I didn't know what, who or where I was , now on HRT and feeling better.
Mom4cem; I have had raynaud's since I was about 10 also , sometimes when I go into the fridge , really quickly without my gloves ( slap my legs) just to get a carton of milk, well I'm sure you can guess! I end up dropping it with the pain. My nose goes very red then blue, and my Hubby ( also disabled ) who is a bit of a joker tells people 'its the gin' trouble is I'm te-total and most of my friends know it .
Eric; I can feel for you , I was admitted into a psychiatric unit for assessment in my twenty's as they felt I was made! and I was given antidepressants ...........( yuck) soon flushed those down the drain ! No I'm not mad or insane.............just a bit crazy , but then I do feel that this is what Has kept me going all this time , my crazy sense of humour!
When I've had a fall ( and there has been loads) I have to look on the funny side, I fell into a hole a couple of years ago and broke my ankle , the ambulance men couldnt believe my hubby and I as we where creased up when they arrived !
Well have you ever tried getting your wife out of a hole covered in cement ( hubby was cementing a deck pole in) when you are just as bad as she is pain wise??? Talk about the blind leading the blind
Kind Regards to all............Willows XXX
Here's what I take every day to survive;
Frusemide . oxycodone . zopiclone . prochlorperazine . climaval . diazepam . mebeverine. clonidine . nortriptyline. domperidone . maxalt melts . metrocarbamol. transtec buprenorphine. Laxoberal . multivitamins. And I eat a very good diet of loads of fruit, veggies, water, wholemeal breads, pastas and lean meats & fish.
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Hello I'm new here today , thank god I've found a forum that deals with my condition!
I think I've had Autonomic Nerve Dysfunction since I was just 15 , the problem is that all those years ago I was treated like a silly school kid who wanted attention, when in fact I was in pain, sweating and passing out most of the time .
I was first seen in London at the National Hospital in Queens Square when I was just 16 , they knew I was ill but just couldnt figure it out.
Now at 50 years old I've been to **** and back with this condition.
In England its not called by loads of different names just A.N.D. and I was only really diagnosed in 2003..........yes .....3 years ago after all those years of misdiagnosis.
I now have the following problems to deal with each and every day ;
Acute sweats at all times of the day or night, these have been going on before I started the menopause ( just to add more problems to the list ) I must have been sweating myself silly now for 10 years ! ( menopause 6 months ) if a dog barks , I eat food, smell food, drink, laughing , car back firing..........you name it and I sweat , not just a little moist mind you ! like a boxer who has done six rounds for a heavyweight fight , its horrendous to say the least and I soak everything and anything !
I have pain down the right side of my face including, eye, ear ( like pressure/running water) nose, teeth, jaw, chin, neck and glands.
I have pain in my neck and shoulders which is so bad at times it makes me cry out when I move.
I have lower back pain that gets so bad I cannot walk and it goes into my hips/legs/thighs. knees/ ankles and feet .
My arms ,wrists and fingers are all swollen and so stiff I can no longer close them ( I do have arthritis as well)
I get tumours 'popping up all over me' some the size of tennis balls others smaller ( 12 taken out at this time)
I have night blindness and problems with blurred vision, plus two small tumours growing on my eyes.
The headaches I get............... they are so bad when I lay down ( over the top of my head and down my face ) that I cannot stand the pain, yet ...........then I stand up they go 'instantly' !!! then I start to vomit and vomit and vomit ( how nice)
I get chest pains ( like angina ) in which my heart beat drops to below 40 beats a minute and I go grey/blue and my oxygen level drops out. My heart beat is only average 50 normal now , but when I go to bed or lay down it lowers even more. if I get really stressed I can push it u to a whole 60 beats ( whoopee)
I have problems with swallowing food at times , its like someone has there hands around my throat and are squeezing it so I choke .
My intestines are the pits and I get contractions like childbirth, I have problems going to the loo ranging between diarrhoea to chronic constipation. I am also getting incontinent at times now.
I dont sleep much because of the pain , so I am completely whacked all day long, fatigue is so bad that I feel like someone has pulled 'the plug' on me at times and I go white as a sheet and almost pass out.
My blood pressure is so low all the time that I have to be careful I dont stand still for more than a minute or so or I'm liable to fall down ( embarrassing or what ) its abut 50/80 most days now. I have Raynaud's as well in my hands, feet and nose so going out in the winter is horrible and I suffer terrible pain from the cold. But I also cannot stand the heat and get short breathed and get really tired quickly .....so I cant win !
So have you any more symptoms to add ?
Is this the lot for me ? I am getting worse each day as I get older, but will not give up!
I take so many tablets I rattle , but still life is good, I have my children and my grandchild and even though I'm disabled I'm a crazy granny.
I'd love to hear from anyone who has the same sort of problems as myself and will reply to all...............I'm a writer by trade so this is an enjoyment for me.
Love to all and keep smiling ..............Willows
Are People Able To Work With Pots
in Dysautonomia Discussion
Posted
Hi, I've had A.N.D. ( as its called in UK) since I was about 15 years old.
A first I did work but became so ill at 17 I had to go into hospital for months.
I then got married had my three children and just ran the house and looked after the children as best I could.
Divorced at 30 I then tried to run my own company , this was O.K. until my now ex hubby put everything onto my shoulders and it became to much and I got worse and worse.
Now aged 50 ( 3 children, four step-children , 4 grandchildren) and unable to work at a normal job, BUT ................I discovered I had a gift for writing and am now on my second novel!
Every afternoon when I go to bed to 're-boot' my body I spend half an hour on the lap-top working ......its feet up , head on a Y pillow, blanket over my knees , video on the telly and tap, tap, tap .
This for me is heaven as I feel that my education has not gone to waste , I feel useful , funny really how such a little thing can have such a big effect on your life !
Some days I'm so ill I cant write a word , other days I do a bit more, its swings and roundabouts and I've learned just how much to push myself ................( cough, cough ) she says' ' she who overdid it last week-end and had to spend three days with her head in a bucket and unable to walk ' !!!! never learn will I
Yes....I'm a comedy writer !!!
Kind regards Willows.