Forum Troubles and Being Stressed

As most of my blog readers know, I lost my grandad 3 weeks ago and I also run a support forum for people with RSD and their friends and family.

I have been SO stressed with everything that has been going off in my life and my familes and was frustrated on the forum when I posted a message and no-one replied to what I had written. I guess I just felt like I had done so much for the forum but no one semt to want to help and support me when I needed someone to talk to. My mum noticed the post before I did so she posted a message saying that she was frustrated and angry that not many people were replying to my posts even though I am going through a very rough time right now but still take the time to reply to others. She also mentioned that she felt now was the time to take a break from the forum and maybe step down from being an Administrator, at least until I can get things back onto an even keel.

After I saw the message that my mum had wrote, I also posted a message saying that I too was frustrated with people that weren't replying to my posts. I didn't put anything nasty but I just said that I felt now was the time I stopped doing everything on the forum. People then replied saying that I had hurt their feelings and that basically what I was saying wasn't true and that they are all there to support me even though some of them have not been. Just the other day, I was talking to someone on Yahoo IM and they knew what had happened with my grandad but still persisted in telling me about how bad their life is, in the end I ended up having to say I had to go because they were really annoying me.

Some people on the forum (especially Felicia) have been great but with others, I just feel like everything has been left to me and that I am having to do everything even though i'm not feeling well myself. I just can't understand why people can't seem to understand what I am saying and realise that I need to take a break otherwise I am going to end up going into a huge flare!!!

I've still decided though that I need to take some time to myself, to relax and just unwind and take care of myself and my family. There is just too much going off right now in my life without having to worry about the forum all of the time.

Hopefully, once I am feeling better, I will be able to go on the forum more but it's just so frustrating that people can't see things from my point of view and realise that once in a while, I may need to take a break!!

I'd like to take this time to thank a few people also that have helped me so much and always been there for me no matter what:

Felicia (Alessea) - Thank you ever so much for being here for me and everything that you have done for me. You have helped me so much more than you know and I could never thank you enough for seeing things from my point of view with the forum and for understanding. You are the best friend anyone could wish for and I could never thank you enough!

Lisa (Lisa_Moon) - Thank you ever so much for taking the time out to read my blog and comment, it really helps knowing that people are here to listen to me let off steam and I could never thank you enough also ((hugs)). I really hope things are better for you and that you have settled into your new home now!

My mum - Thank you so much for always being here for me and for supporting me 100% in everything I do. I could never in a million years thank you for all of the support you have given me - you're the best! I love you so much!

One of the Worst Weeks of My Life

This week as got to have been one of the worse weeks of my life. I am so physically and emotionally shattered at the moment that I don't know whether I am coming or going and the little energy that I did have before all of this happened as just about gone.

On Monday, me, my mum and my nanan went to see my grandad in the Chappel of Rest and that was so hard. My grandad just looked so normal and we all expected him to just jump up and say "I fooled you all" but I guess it is just wishful thinking unfortunately. My grandads coffin was full of pictures of all of his grandkids and kids and I put a letter in that I had written to him and my nanan put his favourite had in (he would never go anywhere without it!).

We didn't stay in the Chappel of Rest very long as it was too upsetting but we all said our goodbyes and told my grandad that everything would be OK.

Tuesday was the day of the funeral. I honestly don't know how I managed to get through it all. It was SO much worse than I ever imagined it would be. I think it made it harder with me going to the Chappel of Rest but I honestly wanted to go and say my goodbyes. Even just seeing the coffin out on the street made me cry. When we got to the church, we said our prayers and sang hymns and the vicar spoke about my grandads life. It was SO hard when he spoke about how my grandad met my grandma and how much he lvoed all of his children and grandchildren.

On the way out of the Church, the vicar played a football rap as my grandad was a very big football supporter. It was supposed to make us all smile but I think it totally had the opposite affect as everyone was in floods of tears!!

After we got out of the Church, we went to the Crematorium. On the way in to the Crematorium, they played 'I did it my way' by Frank Sinatru and even just hearing the lyrics made me cry. My grandad always had to do things he way and even if we told him to do it the easiest way, he would still have to figure it out for himself!

When they closed the curtains in the Crematorium, I just wanted to stand up and shout that was my grandad and that they couldn't do that to him but I know it's too late unfortunately now, he's gone.

When we got back from the Crematorium, we went to our local pub for a tea service. All of our family was there and it was pretty nice - it's just such a shame that it takes a funeral to bring everyone together. I got to see my cousion, Shakira who had a liver transplant last year and she is doing great! She is only 5 so doesn't really understand what has happened to my grandad.

Wednesday, we took my nanan to town as she wanted to take all of the verses to be put into the papers. It cost an absolute fortune! Thankfully, nearly everyone as paid for their verses but my aunty still owes my uncle some money for both the flowers and the verse. I doubt he will ever got the money back as she is one of those people that just expects everything for nothing. My grandad gave her £2000 for a new kitchen about 2 years before he passed away and he never got the money back! My grandad was always the soft one and would give into her but my nanans promised us that she wont.

Thursday, we spent most of the day arranging things and phoning and filling in forms for my nanan. We should get the ashes back sometime this week and my nanan wanted us to order a rose bush for her. We have ordered one that is yellow and supposed to be a 'Celebration of life' and have named it after my grandad. My grandad always said that whenever anything happened to him, he wanted to be put in the back garden so that is what we have decided to do!

I have spent the rest of the week trying to rest as my RSD is flaring up again. I think the stress and all of the walking and things has really affected me. I have been going to see my nanan every day and it's really hard when I don't feel like doing anything but we need to go and check that she is OK.

I start back at school again tomorrow - i'm not sure if that's a good idea or not. I don't know if I am ready to go back at the moment but on the other hand, I want something to take my mind off everything. At least I know that everyone will be supportive and if I don't feel like doing anything, I just have to tell them.

Sorry for rambling - am still very upset and not sleeping.

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....