a person is a person no matter how small- dr suess
well this is the best quote we use in our house.
and for me it means so much the now, because i am so pleased with myself. i said at xmas time id be happy to reach a size 16 in clothes sometime this year. and i never thought just 4months later id be buying a item of clothing at that size! i am in a wheelchair and my legs wont let me walk so its hard to exercise. but i can now say wooo hooo. i put on a lot of weight while being in the wheelchair and having fnd. but im getting it off. i still hate how frumpy i look in my chair. but i cant help that.
people kept saying how much weight i have lost, and i always thought they were just saying that to make me feel better. but when i am able to stand i can see it. what a difference it makes to my confidence the now. so this quote says alot to me to me the now.
well where to start! my legs have not worked right since last aug 2013.
i am having more paralysis episodes the now, some don’t last long other times they do. i have a cold the now and this is setting off more fnd symptoms. i am trying to stay as positive as i can, but sometimes its so hard. i just want to be left on my own,and that isnt always a bad thing.
i helped out doing a fnd event at start of the month (april) and we raised over £1000 for the fndhope charity, it was a great day.
it is still a struggle each day, living with this condition. take this morning, i went into paralysis and my jaw clamped shut, so i tried about ten minutes of self hypnosis and my arms and my jaw started moving again.
it makes you have so many emotions in one day,like angry,upset,lonely,happy,positive. it is hard to explain but you feel angry that you cant do something, but happy when you can do something. lonely when you cant get out like you used too. and positive when you realize that being negative wont help you over come this condition.
i am going to be working on a video of patients with this condition, so that if they have problems with drs etc not believing in this condition, they can show them the video so they can see they are not alone in this,and how it can change someones life.
we have all thought WHY ME? what did i do to get this? Why do i bother? Why can’t i do what i want when i want anymore?
at times it really is hard to keep it together, esp when you feel you have know reason too. but if you look out side the box there is always a reason to keep fighting.
today is beginning to be a hard day of why do i bother, why dont i just give up. but i have two very special reasons for not giving up, Holly and Lilly!
i feel at times that im just being a hassle to people, i cant do what i want when i want anymore,i cant go out for example when i want without having to see if someone is willing to take me. I HATE THAT!! im lucky if im out the house once a week. so when the weekend comes i look forward to it as thats when im more than likely to get out, but not lately. lately im made to feel bad for wanting to try and get out. this is when the why do i bother and why me comes to mind. why dont i just give up maybe that would be easier. but its at those times when you have to think outside the box for reasons not to give up. and i bet you have more reasons to keep fighting than the ones to give up.
sometimes you just need a really good cry! but feel weak if you do. you are not weak it makes you stronger,WHY? because you are letting all the bad feelings and thoughts out. i cry at times right at this moment i could use a really good cry, but i dont have the time lol
just remember know matter how bad you feel the questions with WHY in them have answers. we might not know them at the time but they are there.
well its been a wee while since i last posted. so much to tell…
first lets get how i am out the way, it has been just over 3 months since my legs worked. they are paralysed from hips down. iv had a good load of spasms in my back, they hurt like crazy!!
now the good stuff, we had a meeting in edinburgh with fellow fnd sufferers and dr stone. it was so great meeting everyone. we are going to be setting up a glasgow meeting in january 2014.
i am also doing a fundraiser for fndhope.org im doing a partylite (candles) event. you can view the book online at helens.partylite.co.uk all money raised will go towards helping raise awareness and research for fnd.
think thats about it right now.
i am going back to see my neurologist in november, things have been a bit worse.
the pain in my back is unbelievable!! ever since i had the fall a few months back and hurt my back and left hip iv not been that great, but i dont seem to be having much good days, infact i am not even able to go out for more than 2 hours without being in really bad pain.
i got a kitten a few weeks ago and she has been a great help to my seizures.when they start she comes up and goes to my shoulder and purrs which seems to help calm things down.
today tho i have had another fall and hurt my hip again so im in so much pain, and i cant put much weight on my left side. 😦 i have been having more spells of unbalance and shaky feeling.
well was just a wee update as i am sore and finding it hard to type.
today is one of the hardest days iv had without having any kind of spasm/seizure. my body hurts so much it is unbelievable. i have paralysis all over my body except my right arm! my face is drooped my left eye closed speech slurred, none of my medication is helping my pain, i am actually crying typing this. (trying to distract myself)
i done my hypnotherapy on sunday with george watson and iv had no spasms or seizures since. i have been very tired since but i had a hard week before so was expecting fatigue.
but it looks like my body has needed to go into relapse for a bit. my gp gave me stronger painkillers but they are not helping much today and he is on holiday now for 2 weeks. i do not want hospital time. but this pain on a scale of 0 -10 id say 9!!
iv had worse pain in my life, but im in tears with this and my pain barrier is high. why does fnd need to bring pain???
it would be fine if we just had to deal with the other symptoms but adding pain…. a lot of people don’t know just how bad things can get, i dont know about you but when i see or am asked by someone how i am i tend to hide some of just how bad things are so they dont feel sorry. the pains we sufferers go through is extremely bad, and trying to put a brave face on to certain people can make it harder.
i am one for sharing openly on my group and others how i am i even post photos and videos of my symptoms. like on facebook under functional neurological disorder or fnd hope.
it is hard because i believe in trying not to use much medication but when im as sore as this i just want to scream GIVE ME ANYTHING TO TAKE THE PAIN AWAY!! but there is no magic pill.
i wish i had one or something today tho!
thanks for reading please leave any comments you may have. xx
I met dr stone on the 29th june 2013. it was a great appointment! finally getting to put a face to the name, we spoke about my symptoms and hypnotherapy. i kept going off subject and talking about the facebook groups. lol but i can’t help that.
There was another neurologist in with us, she is opening a clinic in glasgow for fnd patients. it was also said with joy for all those out there worrying about this other condition called conversion disorder it is in fact FND they are trying to get the name changed, we have just got the fnd into the medical book,but still we try to get the old way of thinking out the window.
we will now keep in touch via email, if i think i need to meet with him then i can arrange a appointment.
so to my holiday with the kids and hubby!! i left right after my appointment with dr stone. we went to haggerston castle for a week. it was really good, my two girls loved it! they got spoiled like mad. lolthey held animals, painted their own pottery ponies, went horse riding twice, on swan boats,swimming and won teddies and over 5000 tickets that got them a pink scooter. they loved the entertainment at night with the sea side squad. it is brilliant place to go with the kids but make sure you have enough spending money if you have kids like mine you need it. haha.
it was really good getting away with my family. to get out of the house,town etc away from the work on extension. we got back on sat and at tmes i wish we were still there. but unfortunately we had to come home, back to everything.