My Story

My Story

Postby LittleJedi » Thu Jul 26, 2012 2:43 pm

Hello Folks.

Im a new member, I have my membership for a long time but was too scared to post, I didn't want people to feel sorry or me been a burden on others, but I felt I really need to talk to others and try to move on.

I will tell you my story.

I use to work full time, sometimes 18 hours a day, working outdoors, travelling around place, it was great fun, I was very content with what I had, I was incharge of my own destiny if you want to call it that, then one day I started to get problems with my eye sight, broken vision, flashing lights, I jyst shrugged it off perhaps I was tired or something but I never thought anything about it. Until it started to get worse, A couple of years before I went to an optician and he wanted to sell me a pair of glasses, I said "no thank you" and walked off.

Then I decided to got spec savers I was getting a little worried, the guy he made me do a field vision test, when he saw the results he got a bit angry at me, I mean what the hell im paying for this out of my own pocket why would I be wasting his time, so he made me do it 3 times, and said you better get to your doctor and show him these results, which I did, he sent me to an eye hospital, I attened for 1 whole year every 3 months but they was baffled and could not fingue what was wrong, so they thought perhaps it's the optic nerve, so sent me for a MRI scan, thats when they discovered the tumor. I ws a young guy early twenties, and when the eye specialist told me, my heart sang, I remeber going back home on the bus, I never felt so alone and unable to do anything, that feeling I think you only feel yourself, no matter what any one says,

After that things really started to get bad, serve headaches, been sick every morning, but I still kept doing my job, thanks to my boss who kept me going, if he would not have made me do it, I would have proabbly fallen apart, but he was like a brother. some days was tougher than others,

I went to hosptial to be seen by a specialist, they told me the tumor was small, but hey there aint no more room up there so even a small object can be dangerous, but they assumed it was one the outter side of the brain.

I was fine with it now my life was in someone else's hands I just had to accept, they told me they could not operate for 6 or 8 months, as there was a que, I was fine with that, I don't know if I ever realised what situation I was in, I didn't tell my family only my boss and a couple of friends knew, I don't know why I didn't tell my family, I guess I didn;t want them to worry.

Then one December day, I was at work, my eye sight suddenly went strange, flashing lights, I thought it was nothing, I tried to carry on, then followed the worst head ache ever, it was ten times as worse as anything I had felt before, I leaned against the wall and next thing I know Im awake in hospital, it felt my body had shut down, I wasn't aware of time or what was happening around me, I seen my brother their with me, the whole world was dark, as I lay in the bed, they gave me a shot of morphine for the pain, I remeber asking my brother if my eyes was open, I remember touching them with the tips of my fingers, I could not see, I must have lost my sight for an hour or so, I told teh doctor he told me not to panic, morphine had kicked in and I didn't panic.

One week later I would have my surgery, everything happened so fast, I didn't have time to ajust or take in, now my family knew, it was like having half of burden lifted, I wish I would have told them before, instead of been so alone in all of it.

But after this surgery my life would completly change.

Now I use to be a very out going person, I loved the outdoors, meeting new people, partying, going out, I had my own car, i had everything I wanted, I loved my job.

Now I was in hospital for 3 or 5 days I don't remeber exacally, The surgeon came and she told me, it was tumor on the pituartary gland, they thoght it was on the outside of the brain, they went in through the right hand side, ended up with 32 stitches and huge scar down the right hand side of my head.

Now i waited for 2 months to go back to work, and now to my surpise I couldn't cope with it at all, I was so tired and exhuasted, I was afraid incase something hit me in the head or some on hit me, what would happen to me. so I talked to my boss and me and brother we worked together on the weekends for him.

Then I decided perhaps its time to change my life, I went to college did an access course for one year and went to University, now Universtity was way to much for me, the times one day was from 9 am to 6:30 in the evening with a one hour break I could not cope at all with this, so I ended up skipping classes and in the end just giving up, now I wasn't some one who couldn't handle it intellecualy but phsycially I just couldn't cope with it, it was way too much, and the support from the university was appualing.

Now here began my downward spiral, I stopped going out, I stopped working, I locked my self in my room for 3 or 4 years, the whole world passed me by, everything just became a blur, summers would come and go, i totally lost touch with reality, I would just play games on my computer, my mother would go to the shops for me, I wouldnt bathe for months at a time, everything really fell apart for me, then my mother contacted social services, who got involved and helped turn a few things around.

But I still never recovered, ever since my surgery I changed, I changed from been some one into some one else, I have never accpeted it and I never will, I don;t know how to handle it, I have seen counselers, seen a shrink, but it as selfish as it sounds, it feels like a part of me has died, belive me im grateful to be here, im glad the saved my life but I no longer feel like the same person.

I still don't go out, I hate crowded places, noise . people, I just stay in my room, now i manage to go out once a week with my social worker, and I goto the shops by myself no longer sending my mother.

But why have i changed, what has happened me, I just don't understand it, I went to hospital on Wednesday and I told the specialist and I asked him why am i like this, I told him I have never had a clear answer from no one. and he told me the same thing, perheps its hormones.

For 10 years I have said I would go out on New Years Eve, 10 years have passed and to this day I have not been able to do it.

Trying to leave my house, is even a bigger problem, I have wanted to go for a walk along the canal for 2 years now, I put step 1 and 2 together but the third step I just can't do it. I don't know why.

I just don't understand what I have become....
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Joined: Mon Nov 21, 2011 11:58 am

Re: My Story

Postby member_31784 » Thu Jul 26, 2012 7:14 pm

Hi there
Just to say you are not alone. I read your story and many things felt the same with me.

I think I was very lucky in many ways because I was at work one day and suddenly realised I couldn't read the computer any more. I went to the optician the next day who said they couldn't find anything wrong with my eyes but should see my gp. I went to the surgery and amazingly they had a cancellation so saw my gp who said go immediately to the eye clinic., we are lucky as we have a Moorfields causalty dept near. When I saw the consultant he said
I'd need a scan and went to make an appointment for the next week but came back and said if I went now they would do it. The eye clinic had finished by then so no-one was around but the consultant waited for me and then told me the news that I had a tumour on the pituitary gland - at this point I had no idea where that was except somewhere in my head. He contact the neuro and said they would contact me. I remember phoning my husband to come and get me and then sitting waiting with tears streaming feeling the lonelyist person in the world and a lovely nurse came up and took my hand and said I think you need company. When I got home the neuro phoned and I was admitted on the Sunday (by which time I couldn't really see) and the operation was on the Tuesday . I had suffered pit apolplexy,

I too remember after I came out going on my first outing with the family and completely panicking in the crowds and shaking on the tube.

My recovery has been long - unfortunately my tumour came back. I look at my life "bt" before tumour and "at" after tumour BUT with the help on a VERY understanding family and some really good friends I have got through, I have redefined "normal" and most days are good. I have, however, given up work as I was just too exhausted, realise I am fortunate as my husband is the main breadwinner.

Good luck with your recovery and be kind to yourself and take things slowly. Kare
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Joined: Tue Sep 07, 2010 10:24 am

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