How I miss the Little things

It's amazing how much I miss the little things about my grandad. Like his smiley face, not seeing all of his cardmaking supplies all over the house, not making him a cup of tea when I have to make my nanan one etc.

I miss him SO much already and I wish I could just turn back the time and everything would be OK. They tell you that things get easier day by day but at the moment, I don't think they do, if anything, they seem to get harder.

My nanan got the results of my grandads post-mortum yesterday and it wasn't an heart attack he died from, it was rather Pneumonicosis and Bronchial Pneumonia that he got from working down the pit.

My Uncle also took my nanan to make the funeral arrangements and it is costing a LOT of money to say it is a crematorium!! The corener told all of the grandkids to write a letter to my grandad and that as to be one of the hardest things I have ever had to do in my life. Everytime I wrote something, I would start crying un-controlably. I told my grandad how much I missed him already but also asked him if he remembered when I broke my arm when we went to the caravan and how I was so stubborn as I wouldn't let my nanan take me to the hospital as I thought the taxi would cost too much, instead I waited about 3 days!! My nanan and grandad told me that my health came first, not the money but I wouldn't listen to them at all!!

I also have to find a recent picture of me to put into my grandads coffin. My grandad will be at the Chappel Of Rest from Monday but to be quite honest, i'm not sure if I want to go at the moment as when I saw him in the hospital, it was too painful...

Life is so Fragile

I'm just beside myself at the moment with shock, guilt and sorrow.

We got a phone call yesterday morning about 9.30am UK time from my grandma (dads mum). She was really worried and said that my grandad had collapsed and that he wasn't breathing and that she didn't know what to do. My mum called an ambulance and my dad rushed round to check on them both.

The Ambulace didn't take right long to come and when they got into my nanans house, they immediately started to do CPR on my grandad to try and get his heart beating again. My nanan and dad asked my mum to go round to their house also so that she could sort things out and my mum said the doctors were working on my grandad for about half an hour in the house before they were able to get him into the ambulance and rush him to the hospital.

When they eventually were able to take my grandad to the hospital, they had to have a police car escort them to try and give my grandad the best possible chance of surviving. My mum took my nanan to the hospital, and my dad came round to check on me and tell me to get ready has my nanan wanted me at the hospital.

When my grandad got into the hospital, the doctors immediately started to do CPR on him again and started wiring him up to all sorts of machines. My mum and nanan wasn't allowed to go in to see my grandad, has it was too dangerous with all of the machines.

The Doctors worked on my grandad for about an hour but unfortunately, he didn't make it and passed away.

When I arrived at the hospital with my parents, most of my family were there. The nurses and my nanan had called everyone and told them to get through to the hospital immediately.

The nurses allowed us to go and see my grandad and say our goodbyes. I went in with my mum, dad and grandma and I have to say, it was one of the hardest things I have ever had to do. We all broke down in tears and my nanan started shouting that she wanted him back and that this wasn't fair. Seeing my grandad laid on the bed with tubes hung out of his mouth really hit me and the reality set in that this would probably be the last time I would ever see my grandad.

We stayed at the hospital for a few hours with my family and we were allowed to go in and see my grandad as much as we wanted but I wouldn't go in again has it was far too distressing. My nanan went in with my uncle to comfort him though.

The nurses explained a few things to us and said that it is suspected that my grandad had a massive heart attack but because it was so sudden, they are having to do a post-mortum. The doctors believe that my grandad passed away within 30 seconds of him collapsing and that he didn't look to be in too much pain thankfully.

When we got home, we went and stayed with my nanan for a bit to comfort her and get her a few things. She couldn't really be in the house on her own has it was too upsetting. She kept looking and staring into the chair where my grandad usually sat (and where he also collapsed) and it was so heartbreaking to see.

My grandad wanted a cremation so that is what we are having done. There will be a lot of people at the funeral has my grandad was loved by everyone and no one had a bad word to say about him. The Undertaker is calling my nanan sometime tomorrow morning to start and sort things out and put things in place.

I am a lot more upset today than I was yesterday. I can't eat hardly. Can't sleep. Don't want a drink or anything. I think yesterday I was in shock and just wanted this to all be a big nightmare and that I would wake up and everything would be OK but now I know it isn't.

I SO wish I told my grandad I loved him more often. Wish I didn't say all of the things I said about him not understanding my RSD. Wish I saw him more. There are so many things I wish I did and so many "If only's" but I know they aren't going to help.

I just feel so guilty about everything I said to my grandad. There are so many things I would have done differently and I SO wish I could just turn back time and everything would be OK.

It just goes to show that life is so fragile and if I could say one thing to my fellow blog readers, it would be to tell your family and friends and loved ones that you love them often as you just don't know what is around the corner.

I better go as i'm in tears here...

GRRR, So-Called Friends!!!

It's amazing how much this disease, RSD, makes you realise things that you would probably never have even known. I am not thankful that I have RSD because I do not want it (I mean, who would want to live in chronic pain constantly and not be able to walk?!) but I think it has probably helped me realise some things that I would never have known had I not developed this life-changing condition.

One of the main reasons I had to leave my old school was because of my "friends" not being supportive. The teachers at the school had told me that they were all supportive and that they always asked how I was doing and that they couldn't wait to see me so I really wanted to go back there and socialise with my "friends". However, once I returned to the School, all was not as it seemed. My "friends" never asked how I was doing, instead they just ignored me and pretened I didn't exist. I mentioned this to the teachers and they said that I was being stupid and that of course they cared about me. They were supposed to spend breaks with me and go and sit in the library but they didn't, they just went about doing their own things leaving me sat all on my own.

On the first day back to School, one of my so-called friends wouldn't allow me to sit next to her in the form room. My form tutor kindly asked her if I could sit next to her for 10 minutes and she harshly replied "No, she can not"!! The best bit about it is that this girl reckons she also has RSD in her leg, arm, back and teeth so honestly, if she did, she more than anyone should understand how important it is to sit down and rest and how painful this condition actually is.

I also had pressure from teachers, they wanted to rush me into doing things that I couldn't do. One day in Maths class, I had a teacher complain at me for not paying attention, when I told him it was because of my pain, he said that it was my leg that was injured, not my brain!!! I was also hopping on crutches one day to a lesson and the teacher that was with me said that I had to get a move on has she had better things to do! The last thing she told my mum was that everything would be on my terms and that if I was unable to do something, that would be fine. 2 days after that happened, I ended up in a major flare. It isn't surprising really given the amount of stress I was under.

My mum emailed the school and complained but they never replied to her emails so in the end, she ended up having to call them. The School tried to make it out that it was us that was in the wrong and that is was our fault for not updating them - even though we let them know how I was every week!!!

I mentioned what was going on with my friends to the School's Psychologist and she said that on the day I ended up in the flare, they were going to have a word with my friends to try and sort everything out. From what I can understand, they were going to sort of bribe my "friends" into being nice to me. You can't bribe someone to be your friend, you are friends with someone because YOU want to be, not because someone makes you be.

I'm so frustrated over everything that went off at the school with my friends and everything. The more I think about it, the more I think my "friends" were just using me for what they could get. On my 13th Birthday (2 weeks before developing RSD), I took 2 of my "friends" to the arena near where we live to see Rihanna and the Pussycat Dolls, we took them shopping almost every weekend before I developed RSD and bought them things and their dinners, took them to the movies when something good came out etc. While ever I was buying them something, they all wanted to be my friends but when I developed RSD and couldn't take them anywhere, they lost interest very quickly. Thinking about it now though, the day after we went to see the Pussycat Dolls, my "friends" never even spoke to me, it was like they got what they wanted and they were happy and not interested in me.

I need to somehow try and forget all of those bad experiences I had with my friends and try and move on. This condition has really helped determine who my true friends really are. At least at the new School Centre, I know that the children there are my friends because they want to be, not because I buy them things. I think it's easier has they have all being in a similar situations so know how I am feeling in some ways.

From now on though, I am not going to buy people things until I know whether or not they are my true friends. I don't want to fall into that trap again.

Sorry for rambling, I just needed to let this all out has it has been on my mind for a long time and I guess this is what my blog is for!!

My Weekend

I haven't really done anything this weekend. You see, now that I am going to the School Center, I have to spend most of the weekend relaxing for the upcoming week, otherwise I may end up in yet another flare which I really don't want! It's strange how even just going to a School Center and staying in one place for 4 hours every Monday, Wednesday and Friday can make me so fatigued but trust me, it does!!! I am SO glad that so far the school center is going well and that I have made some new friends who are really nice and supportive ... unlike my so-called friends at my old school!! Apart from the fatigue and pain, I am happy at this center has the teachers understand and don't rush me into doing anything, I am allowed to take a break as and when I need to etc.

The School had a meeting on Friday to officialy "hand me over" to the School Center. We haven't heard anything about how it went but I did get an email from my Psychologist at the School asking how the week at the Center went and if I was worried about anything. I think she thinks that my mum forced me into going to the center even though she didn't!!

I have been talking to my friend, Brogan from the School Center on MSN today. She was really upset has her 19 year old sister has just had a miscarraige. She was about 12 weeks pregnant and was so looking forward to having the baby. Brogan says that she wont even talk to anyone now because she is so angry and upset about what has happened. I comforted Brogan for about half an hour until I had to go but I told her that if she ever wants to talk to someone, that she can always email me. She has been so good to be in the past week that I have known her so it's the least I can do. She said that she will be at the School Center tomorrow but that she may not be her normal, happy-go-lucky self, which is only to be expected. I understand a lot of how she is feeling has I lost my grandma when I was 6 and now that I have RSD, I just feel like I am on an emotional rollercoaster all of the time!

We had the builders in yesterday, they are only supposed to come and work in the week but they had to move our boiler ready for tomorrow. We are having an extension built and a new kitchen fitted has I am quite unsteady on my feet and fall really easily. Hopefully that should make things a little easier for me and my mum.

My mum isn't feeling too well. She hasn't been feeling right for a few weeks now but she now has this weird tingling sensation in the fingers on her left hand. She has promised me that she will call the Doctor tomorrow if it's no better and get it checked out. It's kinda scary has my nanan had Progressive MS and her symptoms started similar to the symptoms my mum is experiencing, although hers was her eyes that started being affected. I've noticed that my mum hasn't been sleeping well either, she gets up at about 5am so I don't think that is helping. She says she feels like I do that no matter how much sleep she gets, she still doesn't wake up feeling refreshed and always feels quite drowsey. I shall keep nagging her until she goes to the Doctors, I think she is scared but like I told her, it's better to be safe rather than sorry and hopefully it will turn out to be nothing serious and it can be easily treated. She's her own worst enemy has before I was diagnosed with RSD, she always wanted to take me to the hospital to find out what was wrong but now SHE is ill, she doesn't want to go!!

My leg has been spasming a lot more than usual today also. The spasms almost threw me off my computer chair this afternoon because they were so bad! It was quite a scary experience to say the least. The weather is horrible so I don't think that has been helping, one minute it is hot and the next it is really cold and raining!!

I'm going to go and try and get some sleep has I haven't been sleeping right well, wish me luck!!...

School and Home Life

It's my day off from school again today. I am so glad because whilst I love the School, I really need time to relax and "recover" from the previous day.

Yesterday at School we did some Science and Maths work. In Science we are learning about the Digestive System which is really interesting. I did some work on it with my home tutor so I understand some of it already. In Maths we did some work on Percentages. I am rubbish at Maths to be honest because I suffer from Dyspraxia which affects my ability to work with numbers and affects my co-ordination. It is pretty stressful at times has I feel like I am hopeless but at least I know there's a reason why I can't do it. A lady also came in from Connexions to talk about Careers, she was asking what I want to be when I am older and I told her that I wanted to be a Psychologist and help people in chronic pain like myself and she said that I would need to take English and Social Studies. She was really nice and said that I would be a good Psychologist has I know first hand what it is like living in chronic pain. Some of the children are going to a College near where we live next Wednesday, I was allowed to go but I am unable to attend unfortunately has I have to go to my Physiotherapy appointment.

I had a good long chat with a girl at the centre, she is really nice and shares a lot of the same hobbies has me. She gave me her email address and we have been IM'ing eachother today. It's really nice talking to someone who doesn't judge me for a change.

After I got home from the School centre yesterday, I went to my grandparents has the builders were in our house and I couldn't get in. I finally think that my grandparents are understanding what RSD is has they actually asked how I was doing for a change. I had to show my grandad how to send an email has he doesn't know how to do that, it was a nightmare but he got there in the end and has been emailing me ever since!! It's quite good has hopefully I will be able to keep him updated on how I am doing without going to see him if I don't want to. Things will never be like they were with them has they have hurt me too much but I DO think we might be finally getting somewhere. I'm trying not to get my hopes up though has I don't want to be let down once again.

My mum came and picked me up from their house when she got in from work and we went to the store, Asda to do a bit of shopping. I couldn't walk around so just went and had a look at the clothes and then went straight back to the car. They had some really nice fashionable clothes that I looked and I got some PJ's which are nice. They look like a tracsuit but are PJ's so I will be able to lounge around the house in them if I want to.

I'm not feeling too good today. The weather is absolutely horrid (it hasn't stopped raining all day) so I don't think that is helping with the pain at all.

I am going to go and lay down so hopefully I will feel better for tomorrow....

I think my grandparents are Finally getting it!!!

Yes, you heard that correctly!! I think my grandparents are finally realising that I AM ill and that I need some extra help and to hear some comforting words.

I went to see them again today, it was paticulary buy choice but I had to has the builders are in our house and I couldn't get in after I got back from the School Centre. The first thing my grandma said to me when I walked through the door was, "How are you, you don't look too well?". I told her that I wasn't feeling too well and was really tired has I hadn't slept properly and she told me to sit down and rest and made me some tea. Before today, it was a real nightmare trying to get them to understand and they wouldn't show any interest in my illness what-so-ever but today I actually felt like they cared and wanted to hear how I was. My nanan told me that I need to tell them exactly how I feel rather than trying to protect them from everything, which was nice.

I think that me struggeling round to see them on Monday did help, it didn't help my pain but I do think it made them realise that I can hardly walk short distances and made them understand why I need to use the extension.

I really hope that they are going to start understanding from now on as it would make things so much easier knowing that someone in my family, other than my mum is there for me when I need to just let things out.

Things will never be the same has they were before RSD has they have hurt me too much for me to be able to trust them but I do think they are finally starting to understand somewhat.

A big thanks also to Felicia for writing the letter to my grandparents, I really think that helped also, even though they wont admit to it.

Update: Wednesday

Today is my day off from School so I am able to get a rest. We have decided that it is best if I just go to the School centre, Monday's, Wednesday's and Friday's, so that I will be able to get a break inbetween and hopefully allow my body time to recover.

Yesterday was a very busy day!! I went to the School Centre for 8.45am. A teacher was supposed to have been coming in to help us with our confidence but she had come down with the flu so wasn't able to come - she is coming next Monday instead. The teachers at the school gave me a load of sheets to fill in and I had to answers questions like, Why aren't you able to go to School, Who do you trust and who don't you trust etc. The teachers wanted me to fill out the form so that they had an idea of what they need to work on with me. After I filled in literally 50 sheets, we went for a break and had tea and toast, which was nice!! After break, the teachers asked me to write a story about an event that has happened in my life. Of course, I decided to do mine about the day I developed RSD, it was really hard trying to remember everything that happened and a bit upsetting but I got there in the end and the teacher was very pleased with my work!!

Monday's at the centre is PE day so all of the children that are able to do PE went into the gym and played fast cricket. Me and another girl who has ME, worked with the teachers and did an ECDL course on the internet. ECDL stands for European Computers Driving License and is a test that you do on the computer and at the end of it you get a certificate and it is a recognised qualification that many employees ask for. A lady is coming in next Tuesday to start the ECDL course with us.

When I got home, around 1.30pm, I went and had a rest for an hour or so and then decided to go on the computer. The builders that are currently working in the house, had to turn the electric off but never warned me. I ended up having to struggle round to my nanans to call my mum and let her know. My grandparents only live about 2 minutes away but the walking almost killed me!! When I eventually got into their house, my nanan said she thought I was going to collapse!!! My nanan and grandad don't really understand so I must have looked bad for them to say that.

I stayed about 3 hours at my grandparents house, I did want to go back home but decided to wait for my mum to come and pick me up in the car rather than struggle any more. I made some cards with my grandad which was VERY hard one handed but I managed!! I used to make cards all the time but either don't feel well enough to make any now or just don't get the time because of other commitments.

My mum came and picked me up on her way in from work and took me back round home. We had about 20 minutes in the house and then my mum decided that she had to go to the pet store for some food for our dog, Jack. I decided to go with her but didn't go to the end of the store has it would have been waaaay too far for me.

We then went and ordered a take-away and had that around 8pm. After I had my supper, I decided to go and get changed into my PJ's. I asked my mum to pull the Ugg Boots off my RSD leg but she couldn't, my leg was stuck in them!! It took us 1 whole hour to get the boots off. My mum wont allow me to wear them again now but they are so comfy, apart from when I try to get them off which is another story altogether!! When we eventually got the boot off, my mum noticed that my foot had swollen a lot more than usual so that was why I couldn't get them off!!! Needless to say, my pain was REALLY high after that!!!

It was a long and eventful day and I am so ready for my rest today!! ...