Messages By: shelleyb2

Hi,

    I have a few medical problems, I have grand mal epilepsy, a spinal injury and bone degenerating disease and an auto immune disease caused by my thyroid and not it's not catching, it's not hiv like a lot of people think as soon as I say an auto immune disease, but I have to be very careful not to get infections as they always get very bad and can cause some serious problems.  I also suffer depression and anxiety and post traumatic disorder, so I have a lot to cope with, but I am doing really well, I can't get around much, not allowed to drive and travelling is very painful for me, my wonderful husband is my full time carer and he is so caring, I have an 18 year old son who is studying to work with disabled kids, he has already learned sign language and loves his work and study, I am so proud of him after all he has had to put up with from me being so sick a lot of the time and I was in treatment for just over 2 years having to be away from him and he coped so well.

I  volunteer at our local hospital helping people who suffer wich chronic illnesses like me and depression and abuse as I also have had to endure.  But even though I am used to helping others, my nephew has had an accident and I am having serious trouble helping him as he is relying on me for support as I too have a spinal injury.

He was swimming with my son, he is only 22 and he jumped into a back yard pool, it is an in growned pool, 10 ft deep and has a diving board, he just jumped in but hit a lilo that was in the pool, he sunk straight to the bottom of the pool and hit his head, he floated upto the top of the pool and my son jumped in to check him out because he was laying face down.  Joel, my son asked him what was wrong and he just said to call an ambulance because he couldn't feel a thing.......

To cut a long story short, he has damaged his spine and neck in 4 places and has damaged his spinal chord which has left him a quadriplegic, it is so very hard to cope with and my son blames himself as it was his idea to go swimming i the first place, I am trying to help them both.  Peter, my nephew gets the nurses at his rehap hospital to ring me on speaker phone and he cries and tells me how hard it is to cope with but he is keeping a brave face for my sister, his mum and his dad as he doesn't want to upset them more.  So, he looks on me for support as I know what it's like to go through therapy and have been where he is, but I can use my arms, he can't,.   How on earth do I help him and what can I say to him except to work hard at therapy and give it all and never give up because you never know what might happen. 

I just need some support here as I am so upset about this, he is like my own son as he grew up with my own son and they are more like brothers, I love him dearly and feel so sorry for him, but he needs support not pity...  What on earth do I do now....

Yours truly

Shelley

I'm sorry, I didn't explain myself right, Peter calls me from his rehab hospital when he has finished his days rehabilitation and rounds and back in his room, the nurse puts the phone on speaker as he has no use of his hands at all, he talks to me then because he knows I know what it's like to live with disabilities.  Joel, my son is finally getting some counselling and the counsellor pointed out to him that he may have saved Peter's life by getting into the pool and helping him take that breath and that he should look at from that angle, what ever the counsellor is saying to him it seems to be working.   He is doing much better and is working hard at his studies again.  Things are finally getting back to normal for him which is great.

All I can do for Peter is just listen to him, he has a lot to deal with and I believe he is just venting a bit and he and I have always been close so he feels he can call me.  I will be fine, I just don't know what to say to him sometimes.  Going from an active and working person to a quadriplegic is a hard thing for anyone to deal with, I think he just needs time to deal with it and if I can help him at all I will.  It's just hard not knowing whatto say to him at times, he is never angry with me or blaming, he is just frightened at what will happen next, he is just a scared young man that doesn't know what will happen next a  he has to undergo operations for a colostomy bag and soforth before he can think about coming hime and for some reason this worries him as it seems like the last step and there is no turning back, where at the moment he has a glimmer of hope that he will be able to walk again...

Hi,

     I have many health problems, - spinal injury, bone disease, grand mal epilepsy, severe depression etc the list just goes on and on.

I live with chronic pain every day, a lot of it is my own fault because I don't take the medication like I should, but it's morphine and I am so afraid of getting addicted to it, so, I put up with the pain and this makes me so very tired and unable to do anything.  I want my life back but it won't happen. 

I have met with my new pain management specialist, he sounds great and has suggested 3 operations on my spine, they cut the nerves that go to the places where most of the pain is, so I would be free of pain, this procedure only lasts 8 months, so every 8 months I would need the operations again, they operate on the 3 sections on the spine, the cervical (neck) throracic (mid) and lumbar (bottom).  The only problem is that I don't have private health insurance, and it's going to be very expensive and very hard to get it because I have pre existing injuries and when I do, IF I do get it, I have to be on it for a year before I can use it.  The operations are major and that also scares me, but to be out of pain would be amazing because I have been like this for 10 years now and my life is so hard, my dear wonderful husband is my full time carer, he does so much for me.  This won't help my epilepsy, but it should lift a lot of the depression because I would be able to do much more.

The problem!!   IF the operations don't work, I won't feel anything, it could paralize me, I mean I have to use a walker to get around now and have lost 85% feeling in my left leg and 25% feeling from my right leg but I fight like hell to get around and live as normal as I possibly can.

I just feel that if I stay like I am, things will just progress to the point where I will be in a wheel chair because they can't cure my bone disease and my bones are brittle and very very weak and it doesn't take much to break them, even a seizure has broken my ribs and fingers as my seizures are very violent.

What choice do I have really?  I either stay the way I am, or, spend more money which my health bills are so high now, I could get private insurance and get more help, or if I stay the way I am, I just have to sit most days because if I move around a lot I risk falling over and breaking bones or damaging my spine even more, I have sciatica aswell and that's very painful and my cervical section is all compacted, which means that it is mainly bone on bone and is so tightly compacted it's like I don't have a neck, you can't tell, but ct scans show it and the lumbar section, I have multiple disc prolapses in both the mid section and the lumbar section and one of the prolapses or discs are so close to the spinal chord that if it touches the spinal chord I will end up in a wheel chair so they won't operate or put a plate in because it's too risky, so to block the nerves is the only option.

I am SO SORRY about the long letter but I needed to share this with you.  I can't sit up at a computer so I rely heavily on my laptop as it keeps me in touch with the world.  I have studied psychology and help councel online, I help people with depression and people who have been abused, I love my work and it is wonderful to be able to help people from home on my laptop, I am good at it because I know and understand how these people feel.  My initial spinal injury was caused by an attack,  someone attacked me with a tyre lever on my spine and legs so I wouldn't be able to perform anymore, I used to be a music teacher, and I used to sing and play guitar and had a small band and I loved it, we mainly did charity work to help the local hospital raise money and the Policemans Ball, but we also had paid gigs to pay for the equipment, we used to play around 3 to 4 nights a week which gave me a good income and I was a single mother back then and it helped me emensley, because I could take care of my son through the day and my teaching meant that I was always home when my son was, I loved my life.  Now I don't have a life, it's more of an existance.

Shelley xx

Hi Martafil,

                   I suffer depression, a spinal injury and epilepsy and am just going  through a tough time, there is nothing I can put my finger on, I do suffer with chronic pain but because I am afraid of getting addicted to my pain relief I don't use it like i'm supposed to and I know I should, but, they are morphine based.  I do take the Kapanol twice a day like I have to and that should be enough, I refuse to take all the others, I would be just looking for trouble, but life is hard.

I love Dr Phil and I would love to  make some friends here and keep up with the message boards but i'm new at it and not really sure what to do.

I hope to hear from you again, I do have some posts here, but they were long and no one answered me..

Cheers  Shelley.

Oh, I'm from Australia

Hi,

     Now, I'm not going to complain, but, how on earth do you tell people you suffer with depression???  The conversation just comes to a hault.  I have a spinal injury, grand mal epilepsy and I can't walk on my own, these things are talked about, but my main issue is my depression because of all my illnesses as I have many to do with a thyroid disease that has caused my spinal problems.  No one understands depression and i'm sure they think you come from another planet or that they might catch it, honestly, I don't know.....

My depression is an illness like any other illness, of course my situation makes it worse some days, but I do have a chemical depression of which I take medication for, but some people I have told about it say to me, 'oh, I wouldn't take tablets for it, it just makes it worse' or 'wow, why don't you just cheer up, lets go out one night, that will make you feel better', they just do not understand and that makes you feel more and more alone.

Shelleyb2

AND, I volunteer and help others with depression online and I love it, but the people we see every day are the ones that just don't understand, perfect strangers do.

Hi,

    I too suffer depression and I have epilepsy and a bone disease and spinal injury and just find it so hard to get out to make friends.  I really really hope I get a reply in here, I don't really know what i'm doing though,

This is the first time I have really tried to reply to anyone, I have put in posts but must put them in wrong because no one has answered them.

I would dearly love to join in here and get to know some people.

Depression is a really bad set back for me, as it makes you feel so alone and seperate from everyone else and it's so hard to explain to people.  If you tell someone you have depression the conversation stops and they either ignore it or find an excuse to go, it's sad really because i'm no different to anyone else, I want to be accepted like the next person.

I hope I hear from someone.

Take care all and have a wonderful christmas and a happy new year

Shelley, from Australia

I have quite a few illnesses, some are, epilepsy, bone degenerative disease, graves' disease, spinal injury, depression and have just been diagnosed with PTSD. I also have digestive problems, oesophegitis and stomach ulcers and bad anxiety.

I am a fighter and I write a lot and paint ceramics and have had my poetry published aswell as making greeting cards, I was donated a lap top as because of my spinal injury I was n longer able to sit up at the computer to do my cards, so the Lions Club donated me a laptop so I could do things sitting down which is amazing and my next card was for them...  The laptop is getting old now and it's not going to last me a lot longer so I am saving up as much as I possibly can as I simply rely on my computer.  I use it to keep in touch with friends because I can't drive, and I also found a lot of friends I used to have were scared of me having seizures as I have them a lot, and, they couldn't cope with it so they just stopped talking to me, nothing nasty, but I do miss them, it's the same with my spinal injury, I have to use a walker to get around and even I was embarrassed by it when I first got it but it meant I could get around by myself without falling down all the time.

I have just turned 40 and am far too young to just sit and feel sorry for myself so if I get down I write about it and if i get angry I do the same.

I am from Australia, so it's hard to have friendships overseas because of the time differences, but, there isn't much in Australia like this or any depression, illness sites.  I just hope I can make some friends here and truly hope I haven't written too much....

I'm not going anywhere lol.  I can't drive and at the moment I have just had another disc rupture, so i'm in a lot of pain and am not that impressed with it, but I just wish I didn't get depressed so much, I get so depresses and cry and don't know why..

I do as much as I can to keep myself busy and I don't sit around feeling sorry for myself, so why on earth do I get so down and have panic attacks??  Does anyone else get like this or am I the only one?? I hope you can help me...

Shelleyx