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Dietician Disappointment… August 28, 2008

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As you can see my dietician appointment didn’t go well!! :0( Although my weight is still 8st and a half at the moment, it was disappointing that my dietician felt it’s not good enough for me to drop another day of the feed yet and the possibility of getting rid of my PEG altogether is slipping away. I felt so bad about that that I cried and made a fool out of myself. My dietician told me I still need to try and experiment with different foods and get a more varied diet before they would let me off the PEG. Of course I was proud that I’d kept the weight on and I look better but I feel it’s not my hard work, it’s the result of the PEG giving me all the vitamins that my body needs! I was disappointed that I couldn’t drop off another day off the feed from 3 days to 2 days.
But it’s hard to think that I can change my ways after I’ve spent most of my life eating the same foods that I have done & that I choose foods that I can chew and swallow more easily. I thought I would at least get my PEG taken out next year sometime but it seems that might never happen at the moment…
I’m just feeling a bit sorry for myself at the moment and that I can’t try harder than I already I am, I already have other things to deal with like my OCD and my other hospital stuff, that it’s just making my head explode! I just let it all out in front of the dietician and my mum. I felt a bit stupid about everything but they both reassured me that everything would be fine and I’ve done so well to get to this point. I suppose I am proud I have put the weight on and gone through the entire hospital journey but when will it get to the point where I’m going to be happy to be my relaxed self again and don’t have to have any anxiety attacks. I hope I’ll be ok and I’ll get myself back to tip top shape! Anyway that’s what I hope!! It may be hard to get through it all but I’ll do my best! After all, there are worse things that could happen. I feel very lucky to have my family around me at the moment.

Little Fat me… August 27, 2008

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I’m worried about my dietician appointment tomorrow because what with all the bad days I’ve been having, I fear I’ve let my routine go and lost some weight. I’m trying my best to stay above 8stone but I think it’s gone down. I’ve not weighed myself for a few weeks because I can’t trust our weighing scales as they gave a different reading each time and I didn’t know which one was right!

I worked hard to put all my weight on since I came out of hospital last year and I have put on an amazing 2 stone from 6st to 8st and looking more healthier which I’m pleased about. I don’t really want to lose that look because I love my body how it is now and I would hate for my skinniness to come back. Everyone that I have spoken to has told me how good I look now and I don’t want to disappoint them by dropping some weight as well as myself.
Although I know my weight won’t drop if I keep on eating small portions often and I have the PEG on bad days when I haven’t had a lot to eat but I worry that I might not come off the PEG unless my dietician is happy for me to do so.
I worry about a lot of things and want things to be good again so I can be happy and relaxed just as I was before my OCD took over and its one less thing to worry about if everything is fine tomorrow. Just gotta keep fattening myself up! Ha

Muscle Pain… August 25, 2008

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Today, I am feeling extremely weak and I’m laid up in my cosy seat trying to keep my head up as I write this. Every now and again, I have to relax and rest my head on the top of my seat to take the strain off my neck. I hate days like this because I can’t do anything without something hurting because I’m just exhausted and weak so I spend a lot of time in my chair trying to regain my energy. My OCD is no help either because it makes me feel a bit crap about myself and having to get things perfect before I can relax. I was in bed till 12pm today and when I wake up, I know if I’m going to have a good day or a bad day. Think of it as spending all day at the gym doing weight which means you can’t move for days afterwards! I don’t know how long it lasts for me. It can be a few days up to 2 weeks and I always feel very helpless during these times and I rely on my family a lot. My mind feels exhausted too so I’m always tired and just want to sleep but I can’t because I’ve just got up! I spend a lot of time stretching out my legs and my arms etc when I feel like this to keep my muscles moving

Feeling left out and more Wii… August 24, 2008

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Me & friends at the housewarming…(im the one in cream)

I went to a housewarming tonight and I played the Wii once again! It’s really good fun and good exercise too! It gets you up to play games such as table tennis or bowling, as it requires you to be standing to be able to get the points! Even if I went to the gym which I don’t, I would give it up because the wii gives me all the exercise I need!!!! I’ve asked my parents if they could maybe get me one for Christmas and that maybe I would put some money towards too, I think it’s worth the money! After tonight, I was well and truly knackered after playing it and I might well get some early nights since I’ve been staying up late a lot these days. I hope I’ll be able to get one for myself and keep myself occupied during the day as well as get some exercise too! I get very bored when everyone in the family is out at work during the week and i resort to sleeping in most of the day to sleep through the boring times! With winter coming, I won’t even have to go out for a walk in the FREEZING cold when I feel I’m getting a bit weak. I bet my family would have fun playing it too ha-ha!

Although I had a good time at the the housewarming and was great to see friends, I couldn’t help but still feel a bit left out as everyone talked over their drinks and the music drowning out everyone’s conversation. I have always emphasized to my friends that i can feel a bit left out in group situations due to my deafness but it gets overlooked. I know they don’t mean to make me feel left out but it always seems to happen. There’s always a moment when a mate that asks if i’m alright and I always end up nodding yes to not ruin everyone’s night by my moaning! I’m not critising my friends as most of the time, they are a fantastic bunch but I just wish they would be more aware about my deafness amongst the loud music or group talking etc..

My house is very quiet without my brother as he is at the Leeds Festival and as much as he annoys me most of the time, I miss him! He always makes me laugh when I’m down, anyway he will be back soon with tales of his adventures!

Feeling left out and more Wii… August 24, 2008

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Me & friends at the housewarming…(im the one in cream)

I went to a housewarming tonight and I played the Wii once again! It’s really good fun and good exercise too! It gets you up to play games such as table tennis or bowling, as it requires you to be standing to be able to get the points! Even if I went to the gym which I don’t, I would give it up because the wii gives me all the exercise I need!!!! I’ve asked my parents if they could maybe get me one for Christmas and that maybe I would put some money towards too, I think it’s worth the money! After tonight, I was well and truly knackered after playing it and I might well get some early nights since I’ve been staying up late a lot these days. I hope I’ll be able to get one for myself and keep myself occupied during the day as well as get some exercise too! I get very bored when everyone in the family is out at work during the week and i resort to sleeping in most of the day to sleep through the boring times! With winter coming, I won’t even have to go out for a walk in the FREEZING cold when I feel I’m getting a bit weak. I bet my family would have fun playing it too ha-ha!

Although I had a good time at the the housewarming and was great to see friends, I couldn’t help but still feel a bit left out as everyone talked over their drinks and the music drowning out everyone’s conversation. I have always emphasized to my friends that i can feel a bit left out in group situations due to my deafness but it gets overlooked. I know they don’t mean to make me feel left out but it always seems to happen. There’s always a moment when a mate that asks if i’m alright and I always end up nodding yes to not ruin everyone’s night by my moaning! I’m not critising my friends as most of the time, they are a fantastic bunch but I just wish they would be more aware about my deafness amongst the loud music or group talking etc..

My house is very quiet without my brother as he is at the Leeds Festival and as much as he annoys me most of the time, I miss him! He always makes me laugh when I’m down, anyway he will be back soon with tales of his adventures!

Annual review at the YCIS August 21, 2008

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I had my annual review at the Yorkshire cochlear implant service today and it went well apart from the early morning start because my appointment was at 10! It takes us about half an hour to drive there down the motorway to get there.

As I was saying, the appointment went well and my audiologist, Salim tested my external part of the cochlear implant and looked in my ear for the internal part. Everything was good thankfully! My cochlear implant was tested too and the sound levels were fine. Salim also told me that there’s no infection in my right ear now, I probably still won’t believe it though because I’ve had it for so long! I’m sure I will one day and will feel I can finally touch my right ear again without worrying I’m going to pass it on the left one!

We also talked about the possibility of upgrading from the 3G Esprit to the
Nucleus Freedom. I was unsure about the choice to upgrade to the Freedom because I don’t really want to go through the whole programming the external part of the cochlear implant again after years of getting it right! Salim told me and my mum that the Freedom was still in the testing stages. He also told me that some people have had some trouble adjusting to the Freedom after having the 3G esprit because they think it sounds different. I already knew it would sound different at first, I was expecting that! I wondered if it was worth the hassle switching to the Freedom.

Salim was saying that because my internal cochlear implant was not the same as the one that most implantees get now when they have their operations as it has been upgraded therefore if I did decide to get the Freedom then some of the features on it wouldn’t work. To be honest, I wouldn’t really care about the features as long as I could still hear well & able to listen to music and family!
I decided to stick with the 3G esprit for now, although Salim told me eventually, I would need to change to the Freedom because as time goes on, technology changes too but I will cross that bridge when it comes! For now, I am quite happy with my 3G esprit and I got my batteries and a magnet coil for my cochlear implant and off we went home!

My Crafty stuff August 21, 2008

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Here is a video of some of things I have made over the last few years…
Some are from college and some I made at home because I got bored…Theres never much to do and my mum bought me a latchhook rug set to make to keep my mind busy! Making a latchhook rug takes patience! The ones I have made have been done over a 3 month period as you have to hook every wool strand with a tool on to a net background to get the pattern looking right. Of course I did have instructions!! I’m always relieved when they are complete though because hooking the strands of wool starts to hurt my arm after a little while so i always used to do a certain amount a day. The elephant blanket was made at college as part of my marks on a creative studies course. I love it and use it a lot to snuggle up with!

My Crafty stuff August 21, 2008

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Here is a video of some of things I have made over the last few years…
Some are from college and some I made at home because I got bored…Theres never much to do and my mum bought me a latchhook rug set to make to keep my mind busy! Making a latchhook rug takes patience! The ones I have made have been done over a 3 month period as you have to hook every wool strand with a tool on to a net background to get the pattern looking right. Of course I did have instructions!! I’m always relieved when they are complete though because hooking the strands of wool starts to hurt my arm after a little while so i always used to do a certain amount a day. The elephant blanket was made at college as part of my marks on a creative studies course. I love it and use it a lot to snuggle up with!

A Wii me… August 17, 2008

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I had been feeling a bit weak last night with my body feeling a bit stiff and heavy when I had a few friends over to celebrate the aftermath of my birthday. I was wondering whether I would be ok to be entertaining my friends when I am like this but I had a brilliant time despite one or two friends not being able to make it! My friend brought her Wii over for entertainment and I aced the bowling game! I got 5 strikes and won!!! Not bad for a beginner! We also watched X-factor and played UNO.
I hate my body feeling like that although, I never know how long it’s going to stay like that, and it can be a few days or up to two weeks. I don’t know what causes it. My mum thinks its stress when i’m worrying about something. I didn’t even wash my hands that much either when I had my friends over! There’s something about having friends over or seeing my friends that makes me a bit more relaxed about things. I don’t know why I can’t feel like that when I’m alone or when I’m with my family, maybe it’s because my friends don’t fully know how bad I can be with my OCD and I don’t worry about them snapping at me about it like my family do at times.
It was nice to have a relaxed evening and enjoy myself.
The only bad thing was yo yo ing to get up and play on the Wii and get drinks etc because it takes quite an effort to get out of seat when I’m stiff and heavy. I just feel like a dead weight when I’m trying to get up, my legs can feel incredibly weak and could easily give way if I didnt eventually get on my feet or sit back down again! It can be quite a worry for my mum when I’m like this because she worries whether my legs will give way when I’m going upstairs or in the bath and knock myself out.
I wonder if I’ll ever be able to live independently if I can’t cope with living on my own because it seems to me at the moment I always need someone around to help me with things.

Sleeping Beauty… August 16, 2008

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I was reading the Cochlear Kids blog and they have a post about their kids sleeping without their cochlear implants.

I, for one love it! Even since I was born, my parents told me that before they discovered I was partly deaf, I would often be asleep because no noise ever woke me up. Every now and again, they could take me to the local pub in my carrycot and enjoy their drink and I would sleep through the whole buzz of conversation and classic pub songs.

I love how I can sleep through the night without my cochlear implant. It’s nice and peaceful. Nothing like the occasional traffic on the road outside my window or heavy rain to wake me up, I can keep my window open all night much to the envy of my mum! When it does rain (which is nearly most of the time!!?) I love to watch it even without hearing it. I can also watch my TV in bed with subtitles too!

What with my PEG pump, it beeps really loudly when you switch it on, if the pump is on hold and when the feed is finished so I appreciate it that I don’t hear it in the morning when it goes off and my mum turns it off and flushes my PEG with water. It’s a sound that will make you cringe! BEEEEP BEEEEP BEEEEP!!! Thankfully, I’m only on 3 nights now as setting up the pump and the feed is beginning to become a chore, it’s so heavy to drag the pump while attached to my PEG up the stairs to my room that I’m surprised I don’t have bigger arm muscles!!!!

Another thing me and family love that I can sleep through anything without my cochlear is when my family use my computer that’s in my room because the tapping of the keyboard or the buzz of the PC doesn’t wake me up. I could literally have a bunch of people in my room talking and I would not know about it which makes some people jealous! There could be plenty of things I wish I could hear but I wouldn’t change the fact that I am profoundly deaf with a cochlear implant for the world!

There is one bad side that I sleep without my cochlear implant on which is I never get up when I would like to. I have a choice between someone waking me up or sleeping in! I would like to be able to get up for an appointment if needs be like when no one is around such as my family are working. I have tried vibrating watch alarms but it doesn’t always wake me up because the vibration isn’t strong enough. I also tried an under the pillow vibrating alarm clock but it was uncomfortable to lay on with normal pillow so now I’m looking for a good portable small vibrating alarm clock which I can now have because I use triangular pillows. If anyone knows where I can get good one for a good UK price from, please let me know!!!