Raynaud's syndrome

I am not looking forward to the winter months when it becomes cold because I also have Raynaud's syndrome too. When the cold seasons come, I find myself constantly trying to wrap up warm and it takes forever to warm up! I also find myself staying in a lot more than usual because I don’t want to go out when it’s freezing which makes me even more bored. I’m sure I’ll keep myself busy with a latch hook rug once again! I will probably live in my jumpers the whole winter months! Although the weight has made a bit warmer than usual, I’m not sure how much warmer it will make me in the winter months. I hate the cold! Even the slightest draught makes me cold! Grr

Out of control!

I have decided to give cognitive therapy again as my OCD has slowly been getting out of control! It is really beginning to frustrate me and my family because I don’t need to be doing these silly little rituals but I cant help it. Something clicks in my mind and I find my self washing my hands yet again; This time I have opted to go with someone else after the last time I tried cognitive therapy and hopefully this time I will sort it out once and for all! It may never totally go away but at least I can keep control of it and beat OCD. It’s just becoming very time consuming and making me miserable because I want to stop what i'm doing. It is also now getting in the way and stopping me from doing the things I enjoy. I used to be able to touch the things I hate now and it is getting in the way of when I want to go out somewhere with friends or family, but I worry about the things I don’t like and would avoid them. I don’t know how it started or how it got so bad but I want to get back to normal and enjoy my life without worrying about pointless little things.

I just get so angry with myself over the little things such as doing my hair when I can’t get it right and it frustrates me to the point I end up in tears. My family can get angry at me about it too but I know this is because it’s getting on their nerves as well. That upsets me because I don’t want to get on their nerves, I want to be able to have fun and relax like I used to.

Fingers crossed that my cognitive therapy works!!!

Isolation

I do feel isolated from time to time being at home most of the time. I do things to keep myself busy like making things. My friends have their own lives/careers so I don’t see them as much as I’d like to. We always take the time to meet up as much as possible. I volunteer one day a week at a special school to get out of the house as I can’t work. I get tired easily and if I had a job, there would be sick days and hospital appointments so I stick to volunteering where I can do what I can on my own hours. I help out on reception doing admin and I enjoy it.

Even being with friends can be hard because I’m deaf and when I’m with a group of friends, it can be hard to follow what everyone is saying. I could be out for a meal with friends and I would be sitting quietly while everyone is chatting because I’m not following what they are saying .The voices come in all directions and I’m not sure which way to look and who to talk to! I try my best to join in at times but I’m better on a one to one basis! It can be hard when I’m in a place that’s noisy too. A cochlear implant doesn’t solve everything yet! Maybe in the future, I’ll learn to deal with it more and my communication skills will get better.

Just one of the things i made while I was at home

A latchhook rug made which I made over 3 months.

A best friend's wedding

I recently went to one of my best friend's wedding at the beginning of July. It was a brilliant day and I was honoured to share it with her. It was also great to see all my friends reunited again after some had moved to another part of the country or had new jobs. I had a night off from my feed to stay at the hotel that my friend had her wedding reception at. I felt very confident in my 2 new outfits and I didn’t even let my OCD get in my way!

Even more weight...

Since Christmas I have put on another stone on and am now 8 stone! I see a dietician for my PEG who keeps an eye on my feed. I see her every couple of months and each time she has been pleased with my progress and has reduced my feed gradually over the months from 7 days a week to 6 and then 5 nights and so on. So far I’m on 3 feeds a week. I do worry that I might lose weight once my PEG has been removed but there's no way my PEG will be removed until I’ve spent 3 months without the feed to make sure I can maintain my weight. Hopefully I will be able to; I just have to keep eating little meals but often and lots of snacks!

What happened last year gave me a lot to think about, how lucky I am and have a great family who support me. I don’t really venture out of the house most nights and enjoy time with my family watching TV. I have a great set of friends who are always there and we can go for a meal or just a trip to the cinema. I hope maybe one day I’ll find a lovely boyfriend too!

Christmas 2007

By Christmas 2007, I was 7 stone and getting used to my new body. I had always been slim and never weighed as much as 7 stone in my life. It was a sign that the PEG was working. I was enjoying buying a whole new wardrobe of clothes to suit my new body. I had gone from a size 8 to a size 12.

My mum had wrote a letter to the local paper who were doing a Christmas wish article. The Christmas wish was about people who had a bad year in 2007. She had nominated me to get a new laptop because I already had an older laptop but it was slowing down. She knew I was always on my laptop talking to friends. On a Thursday 2 weeks before Christmas Day, the newspaper rang up and told us they were awarding me my Christmas wish! I was shocked but happy! I never thought one of them would be me because I thought there would be people worse off than me. I had my photo taken for the newspaper and in the next few days I was on a full page spread on page 5! I didn’t think the picture would be that big! All my family and friends thought the picture and the article was really good!

For Christmas Eve, I was going to a meal with friends so I went out with my mum to find a nice outfit. I didn’t think that I would find a dress because I had not worn one for a while because I was always very slim. I didn't realise how much weight I had put on till I started trying clothes on!

I finally found a great dress that suited me and was ideal for the Christmas Eve meal. My friends said I looked so much better with a bit of weight on. I was actually very happy with how my body is and got more confident. I actually had a bust now and felt more girly!

A little trip to blackpool

I rested for a few weeks at home and enjoyed the sunshine we were getting. I sat in the garden most of the time reading magazines. I was 6 stone at this point.


In August 2007, my parents took me to Blackpool, a seaside town for a few days to recuperate. My brother decided to stay at home. The last time I went to Blackpool for a few days was after my last intensive care stint in 2003 and we went in the summer of 2004 but I ended up collapsing after walking too much. So from then on, we either took the tram or had a rest between walking.


I had brought my PEG pump and everything that came with it along too as I was still being fed every night. When I was not being fed, I was quite happy to sit in the tea room of the hotel reading a paper while my parents took a break from me or we all went out together. I went to see a show Legends where we saw the impersonators of music artists such as Freddie Mercury & Rod Stewart. I thought it was brilliant and very entertaining! At one point, Freddie Mercury ended up sitting on my lap as part of the act!

I came back home refreshed and ready for anything!

On the hospital ward...

I was wheeled into a ward in the hospital, in my own private room. I was now able to view my phone where I had dozens of messages from my friends. I was also very glad to look online on the TV they had at hospital and watch TV too. I missed my internet browsing as I always talk to my friends on MSN messenger.

After 6 weeks in intensive care, I was now able to have my first proper bath on the ward where my mum helped me. I was careful not to get my tracheotomy dressing wet and my PEG site was fully healed up so that was fine.

My parents took me outside for my first breath of fresh air since I went into hospital. They put on my new comfortable dressing gown and they wheeled me out in a wheelchair. It was a nice sunny day and we went to the front of the hospital on the grass and had the nice warm sun on my face. It was nice to get out of hospital after being laid up for so long. I began to walk around a lot more although my PEG pump on a stand had to come with me! The PEG would only be put on over night when I arrived home.

Again, I got bored and fed up of being in hospital, it wasn’t easy watching TV without any subtitles but I felt very lucky to be alive after the near death experience and counted down the days til I was out of hsoptial.

In the middle of June 2007, after a week of being on the hospital ward, I was finally allowed home. With instructions on how to work the PEG pump, we set off home.

The near death experience....

In intensive care, I was wired up to a life support machine with a breathing apparatus down my throat. I’m only going by what my parents told me as it was them going through the experience rather than me as I was sedated most of the time.

The doctors told my parents I had caught pneumonia and septicaemia. The doctors told my parents that some of the food I ate after the PEG operation had gone into my lungs which set off a chest infection in my lungs leading to pneumonia. My mum also told me that the nurses that told me to eat should have known of my condition and I was too weak to swallow and should have held off eating til I was stronger and fed me through the PEG after all that is what it was there for!! I was seriously ill and was given 24 hours to live at one point. My parents were distraught at this. As I lay in my hospital bed in Intensive care, my extended family was to come and see me in case of the worst scenario that I might not make it.

I made it through the night although doctors were still quite worried about me. I lay in my bed hooked to machines, whenever the doctors tried to see if I could breathe for myself instead of the breathing apparatus. The doctors had to wake me up but I kept trying to pull my wires off myself so they had to sedate me again.

My family was asked by the nurses to try playing music to me so they put my cochlear implant on my ear while I was sedated as they believe you can still hear music when you are under sedation.

After 4 weeks, I was finally able to come off the breathing apparatus but I was still very weak. The doctors were still worried about my breathing so they decided to perform a tracheostomy (A small slit in the throat to help me breathe). There was always a risk it might damage my vocal chords but done right it would be fine. My parents told me this by a note; I was far too weak to be bothered and agreed. With the tracheostomy in my windpipe, I was unable to speak, so the nurses gave me a mini whiteboard and a pen whenever I wanted to say something. My tracheostomy was connected to an oxygen machine which put air through to my lungs. I couldn’t really move with it on and I felt I had to keep my head straight. The oxygen tube came off a few times and I panicked about it thinking something bad might happen. The nurse reassured me that it was fine if it came off. It was hard to sleep with it on and looked forward to having it removed. Although after 5 weeks asleep, I wasn’t tired! I found myself talking to the night nurse for a few nights. He kept trying to get me to go to sleep because it was what I needed to get my body to recover more but I couldn’t seem to drop off. My mum often called when visiting times were over and see if I was ok.

After a few days, I knew what was going around me now. My family visited everyday with news, including the fact that my friends were very worried about me. They had set up a webpage for me with get well messages. I felt very overwhelmed but my friends couldn’t visit me because it was only family and 2 to a bed in the intensive care unit. Although they bent the rules a bit and allowed my best friend Kevin to visit me. I was pleased to see him but I was very tired and couldn’t talk for long.

I had been on some powerful drugs and it gave me some very vivid dreams which seemed so real. One dream was that I had been in the hospital helicopter and was in a different hospital entirely!! (My dad explained it was probably because I saw the helicopter pad at the hospital) Another was that a nurse had cut through my cochlear implant wire by accident. I was so distraught at the idea of losing my external part of the cochlear implant that my parents had to tell me that it wasn’t real! I found it hard to take in that it was just a dream! Although a real incident was that my cochlear implant ended up in the laundry because the nurses had forgotten about my cochlear implant and it fell off my ear while they were clearing my bed sheets. I was not very pleased to hear about that!!

I had my chest drain taken out, it wasn’t very pleasant but it was responsible for getting all that mucus out of my lungs! I still had to find the strength to cough though as that was the natural way of getting mucus out of your lungs. The doctors always kept telling me to keep coughing and get it all out. It was hard though because my chest felt tight and I couldn’t get enough breath in to cough. They also took my catheter out which was a relief because every time I moved, it was pretty uncomfortable and I was now able to go to the toilet properly again!

The whole time that I was in intensive care, my PEG was feeding me by a drip pump. I’m grateful I couldn’t feel the pain after the actual PEG operation. My parents learnt how to use the feed pump while they were waiting for me to come to from my sedation. I even learnt that my brother was very upset and was a rock for my parents.

After talking to my parents about what had been happening while I had been sedated, my dad told me he had won a large PG monkey off eBay because he knew how much I love the PGtips monkey. He told me he was safe and waiting for me when I went back home! My parents also told me they had changed my bedroom around at home, a new bed and drawers etc. I couldn’t wait to see it. They had changed my bedroom because when it came to the point of coming out of hospital, there was no way I’d be able to get up my bunk bed!

The change of bedroom was also to do with my drip feed because when I am on my feed, the wire I am on is not very long and has to reach my bed where I’ll be fed overnight. My parents also had to get a triangular pillow to keep me upright in bed because when you feeding you cannot totally put your head down totally on the bed as you may choke on the feed going in your stomach. I found my triangular pillow much more comfortable than a normal pillow because as I was very slim, my bones used to ache when lying on a mattress as I didn’t have a lot of muscle to cushion it. I could rest my head more easily and be more comfortable to sleep without my arm hurting me.

My tracheostomy was getting better and they could now let me speak when they took a piece off that was connected to it. My voice was very hoarse and I tried to speak with it but it was a very weird feeling like you have a box hanging on your throat. I sort of sounded like a Dalek from Dr who!

Eventually, I had the tracheostomy taken out and I was left with a hole in my throat, the doctors told me that the hole would eventually get smaller and seal up. For now, I had a dressing on it. It started at the size of a 1p penny. I could feel the gaping hole in my throat but with the sealed dressing on it, the hole was completely fine and would seal up and leave a tiny scar.

My tracheostomy scar


I was bored a lot of the time I was awake so the nurses gave me a TV to watch and I watched Big brother and watched the contestants going in. I had good chats about big brother with the nurses who I liked and who I wanted to go etc. The intensive care nurses were really friendly and took good care of me. I got to know them well the 6 weeks I was in intensive care.

When it came time to start getting out of my bed to walk about, I was very dizzy as id just been laid up for 5 weeks. I had a physiotherapist help me get out of bed, at first it was just walking a few steps to a seat for the nurses to change my bed covers. I didn’t like this because once I was sat up, my chest felt tight and I felt like a heavy weight that only those few steps really took it out of me. As time went on, I began to use a crutch with wheels on it and I would hold on to it and began walking even further. When I got bored, I sometimes felt well enough to go to the hospital shop, although in a wheel chair. I also ventured to the cochlear implant unit and said hello because they had been worried about me!

June and 6 weeks of being in intensive care, I was well enough to be moved to a normal ward. I was very happy about this because it meant i was getting better and soon i could go home!

percutaneous endoscopic gastrostomy (PEG)

I went for a pre-op, I had the usual tests and the surgeon doing the operation told me the ins and outs of it all. He also showed me the PEG that would be going in my tummy! It looked so long but the surgeon told me half of the tube would be in my stomach.
I was really worrying about it now but my mum always assured me that when I put some weight on ill feel a whole lot better!


I went for my operation on 3rd May 2007 not exactly looking forward to it! I came with my mum to the ward feeling very hungry because I was fasting before the operation.
The nurse took my details and the nurse showed me to my bed, I stayed there for 2 hours before it was time to change into my gown and go down to theatre. I had asked to be put to sleep by gas first before they put my cannula needle in my hand as I was so terrified of having it after having so many operations.

The operation overall went well and I was back on the ward. Surprisingly I didn’t feel any pain but I was feeling very weird and drowsy. In the ward my parents and brother were at my bedside and I couldn’t focus on anything, I was nipping my parents and brothers hands for some reason. I began to bang on the hospital bed bars too, I’ve no idea why! The nurses encouraged me to eat because i was still eating orally. I tried to eat some mushy banana and some yogurt as well as drinking orange juice.


After 4 days on the ward, during the night I texted my mum saying I felt unwell so she came in early the next morning. When she came in to see me, I was having trouble breathing, and mum rushed out to get a nurse.

The nurse saw me and told my mum to stand out of the way. They sent in a crash team in and they put me on life support. They inserted a chest drain, a catheter and all the necessary wires including a tube down my throat to help me breathe. As I kept pulling out my wires they had to sedate me.

I was rushed to Intensive care ward once again.