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Friday, February 25, 2005 10:16 PM CST

Wow! Long time no update yet you lovely people still drop by and sign my guestbook! I don't know what to say! You guys are amazing!



My sister Jesamine got married to Ewen on the 16th August, I couldn't get to the wedding (I still haven't been able to leave the house) so we had a little wedding party at home, and took alot of photos of us all dressed up. Which was fun :) Jes has also just turned 21 on the 18th Feb. She's getting old!

Mum has recently had a cataract removed from her left eye. They nicked her eye a little during the op but she's healing up well, though bright lights still hurt her.

I'm doing okayish, I had some sort of bug back in November which took alot out of me but I seem to be bouncing back now. So with any luck I won't be taking 10 months between updates. I've been up to doing some craft things recently which has been fun. My current project is making some embossed cards.

My doctor has reccommended Mordaphlin (which I have spelled extremely badly) but it doesn't mix with one of my other meds. If I agree to taking it I'll be having a prolonged stay in hospital due to a high risk of complications such as heart failure, which surprisingly isn't giving me the warm fuzzies of confidence. We are looking into the risks and if they aren't too great seeing whether If be able to take it at home and maybe have daily visits by a nurse.


I've changed the contact email so that I can try to keep up with a smaller ammount of mail, so feel free to add it to your address books. As you can see I've also updated the photo, it's actually older than the last one but I thought it would make a change.

I'll try my best to update again within the next couple of days.

Bless you all

Cassie

Thursday, April 8, 2004 8:47 PM CDT

Hi Everyone!

Sorry it's been so long between updates again, I'm not online much at the moment.

I have a couple of prayer requests, Ewens mum has been diagnosed with breast cancer. Luckily it had been caught in the early stages, Jes said she's remaining positive and is trying to comfort everyone else about the news. The other request is for my psychologists boyfriend who also has cancer, I'm not sure what kind as I only found out as she had to miss some of my sessions as it's the same day he has chemo. I think he's been getting chemo for a couple of months now.

I'm doing okayish, a bit more tired since my meds were increased, but not too bad. I've been

doing a lot of art and craft things when I haven't been up to using my laptop. Some have turned out well, and others, a bit different to how I planned. For example a couple of cards I made turned out upside down, I think that I may have been a little sleepy when making them. But if you ignore the paint on the carpet (that is barely noticable, it's even the same colour as the carpet, though a different shade...) all has turned out well.

Mum and Dad are doing well. Dad has a long weekend off because it's Easter, so I get to see him for more than just a half hour in the evening :)

I hope you all have a great Easter weekend

Lot's of love

Cassie

Wednesday, March 3, 2004 10:54 PM CST

An update! Finally!

I'm sorry about the wait. My anxiety got really bad and it's been a while since I've been online. I've had my meds increased which has helped but one of the side affects is fatigue, which isn't all that fun. But it is the lesser of two evils. It's going to take a little while before I can get back into the swing of things but I'm hoping it won't take too long.

Both my Mum and sister had their birthdays last month, so Jes and Ewen came down to stay for a couple of days. They will be coming to stay this weekend I think as it's my Dad's birthday on the 11th. My Aunt Julie came to stay a couple of weekends ago which was nice as I hadn't seen her for about 5 years. I only really got to see her over breakfast on the Sunday but it made a nice change. So it's been quite a busy month for me.

Mum was in hospital for a few days at the end of January, we were worried that it was another heart attack but thankfully it turned out to be angina.

Thank you all so much for your messages and prayers, it means a lot to me.

All my love
Cassie

Saturday, January 17, 2004 9:52 PM CST

Hello all!

Wow it's been a long time since I last updated. Either the relapse has slowed down or I had a good day today - I'm hoping that it's the first, so I thought I'd update.


Not too much has been happening over here for me apart from a lot of sleeping. Mum says I'm paying back my energy overdraft, does this mean I need a meeting with the sleep-bank manager?

I'm going to try and update the rest of the last couple of weeks soon, hopefully in the next few days.

Thank you so much for stopping by

All my love

Cassie

Sunday, December 28, 2003 9:26 PM CST

Hello All!

Sorry that it has been so long since I updated. I've been stuck without internet access for a while, but one future brother-in-law and a new cable and I'm back!

I had a great christmas this year, I spent it in my Mum's bedroom (which is the red room in the pictures, my room's green) and we had Christmas dinner in there as this year I wasn't able to make it to the table in the sun lounger. I got losts of lovely presents, that I had to open throughout the day, but with a lot of determination and effort I managed it.

Jes and Ewen arrived on Saturday and they are staying until Tuesday evening. It's nice to see them but as always it is exhausting.

Health wise I'm coping, though more worn out and I'm really going to have to take things slowly or I'm going to crash, so that's my early new years resolution.

I'll get some photos taken tomorrow and put them up soon.

Thank you so much to everyone who has stopped by, I hope you all had a wonderful Christmas.

Saturday, December 13, 2003 11:26 PM CST

Please stop by Angel Davin's site who sadly passed away Dec 11th. I'm sure his parents will appreciate the support.


Hi Everyone, thank you for stopping by :)

My new meds have been causing me to be much more sleepy than usual. But as I'm all set for Christmas I have plenty of time to rest. Dad is going to be putting decorations up in my room tomorrow. This year they are going to be directly above my bed as last year they were hung up around my room, and since I have only 3 inches of clear vision without my glasses I couldn't see them.

Mums appointment went well apart from the fact the she had to keep her arms above her head for about half an hour, which made her back and arthritis really bad. So she is dreading her appointments this week.

Sunday, December 7, 2003 10:49 PM CST

Hi all!

Sorry that it has taken me so long to update. I'm sti;; really worn out from jes and Ewens visit a couple of weeks ago. I've been sleeping more and just more tired than usual. So I'm busy resting up for Christmas.

I have two different doctors coming this week so my rest is going to be disrupted a bit, but I should cope as long as the visits are kept short.

Mum has a hospital appointment today to check up on how her heart is doing, then at the beginning of January she has an in-patient appointment for at least 4 days for scans and tests to see what is happening with her back. So we have a busy few weeks a head of us...Oh and we'll be fitting in Christmas too ;)

Thank you so much for coming by
Lots of love
Cassie

Wednesday, November 26, 2003 1:55 AM CST

Not really an update, but I've added new photo's to the phoro album of me having my hair washed.

Jes and Ewen came for the weekend and I'm still pretty exhausted so I'm going to try for a full update soon.

Thank you for stopping by :)

Tuesday, November 12, 2003 03:32 AM CST

Hello! Just wanted to let you know that I've been prescribed the anti psychotics, I'm taking Quetiapine. I'm a little worried about the possible side affects as I have a friend who is part of a law suit against the makers of it as it caused her diabetes.

NO mews yet on any pain killers but my sister sent me a magnetic bracelet to help with pain. It doesn't have any effect on my muscle pain but it has helped with my joints/bones.

Thank you for stopping by :)

Wednesday, November 12, 2003 10:32 PM CST

Well I didn't quite make the extra update last week like I had been hoping, but here's one now!

The wheelchair fitting was today. Nikki the lady who came to do it, agreed that the new back rest wasn't enough for me. She is ordering in a new higher back rest for me with a cushion with head support. I'm also getting something to support my torso so I can sit in the chair and not hang out of it. Hopefully it will all arrive sooner than later and that it helps.

I've been more tired and achey the last week or so, so I'm concentrating on resting up for Christmas. I'm amazed at the fact that I'm already pretty much organized for Christmas. So that hopefully means less last minute panicking.

Please keep Katia in your prayers, she is really in need of them, and also my friend Kat (even though she wrote in the guestbook that I shouldn't worry).

Thank you so much for stopping by.

Tuesday, November 4, 2003 10:42 PM CST

Please could you all keep my friend Kat in your prayers, she has survived cancer three times and now her liver is failing. She's been through so much in her 20 years and really deserves a break.

I'm doing fairly well, about the same as usual just with added temperature control problems, but that seems to happen every winter.

My new wheelchair has arrived, only about six weeks late so it did come relatively quickly. I still need for the OT people to do the fitting as it has something to add onto the back rest to make it into a high backed chair. The only thing is I wasn't needing a high backed chair I was needing one with a head and neck support... Oh well, we can ask them about it when they come for the fitting.

I'm going to try and do another short update this week as my brain isn't working and I've spent the last couple of days thinking that I've forgotten something.

Thank you to all who have signed mine and other cb kids guestbooks.

Friday, October 24, 2003 10:38 PM CDT

Again I'm late with the updates, sorry!

It has been a very busy week by my standards this week. On Sunday I had my hair washed, we tried a new way of rinsing my hair to hopefully get all the shampoo out by filling the bed bath with water. After soaking both the bed and me we decided that it was perhaps not the way to do it. Monday was bed bath part 1 and tuesday was bed bath the sequel. So I smell nice everywhere!

On wednesday my psychiatrist came to give me a meds review. I'm going to continue with the same anti depressant, but I'm also being put on a low dose of an anti psychotic to help with my anxiety. He is coming back in December and there is the possibility of being put on a mood stabilizer. I'm a bit worried about the side affects as it will raise my blood sugar and slow down my metabolism, neither of which I particularly need.

My only other activity has been Christmas card making. I have two and a half finnished, so though I'm not going to have enough handmade cards for everyone I will have at least a few made.

Thank you so much for stopping by. Reading your messages really helps.

Tuesday, October 14, 2003 11:56 PM CDT

Not much change happening over here. I still haven't picked up completely but I'm not sniffley anymore, which is good. Mum is doing much better, she had a nurse come visit on Monday and our GP came yesterday. The nurse felt that she hadn't done much to help, as there wasn't anything to suggest to change Mum's lifestyle, only that she has to lower her salt intake.

Dad has been on a course for the last two days and is back at work today so it's just Mum and I again. Which will be nice and peaceful after Jes and Ewens stay at the weekend. They are both lovely but sooo exhausting!

Thank you to all who have stopped by. I'm going to try and be a little better at updating :o)

Wednesday, October 8, 2003 1:21 AM CDT

Hello! Sorry for the long time it's taken me to update.

I'll start with the good news :D Mum came home on Friday! Yay! She is still quite weak but she is doing well and is getting stronger by the day. She is on a ton of medication though, but as long as it helps. Dad is off from work until wednesday of next week so Mum is going to be made to take it easy.

Jes and Ewen are coming down for the weekend again, their heating has broken down, they have to stay in Glasgow during the week for work but they are coming down here to warm up.

The not so great news is I'm not well *sniffle*. I've been getting high temperatures on and off and generally feeling unwell. Hopefully it's just a cold and doesn't knock me back too much.

Thank you again for stopping by. Please visit my friends pages as I haven't been well enough to visit them for a while.

Friday, September 26, 2003 2:22 AM CDT

Mum has been experiencing bad withdrawal symptoms from one of her meds as she hadn't had it whilst in hospital as she was vomiting a lot. The main symptom is paranoia and hallucinating, she was convinced when Dad visited wednesday that social services were going to come and take me into care. Dad was reassuring her that I was fine and that since I'm 18 it won't happen but it didn't help. I'm guessing the fear is sparked by the fact when I was 13 I had a really bad doctor who ended up getting welfare officers to come round to our house and threatened to take my parents to court if I didn't go to school etc. Many kids with M.E have been taken away from their parents and put into childrens homes or psychiatric hospitals due to their doctors. My doctor also tried to send me to a psychiatrist who is notorious for locking kids with M.E away, but he had already been banned from seeing kids with M.E by then. We did find a good specialist eventually who fought off the various departments over the years.
< /ramble>
Anyhow when Dad called the hospital last night she was doing a bit better so he is going to visit her today. We are now hoping that she will be home mid next week as she is due to stay in for a couple of days from Monday.

My M.E hasn't been too great the last few days, I'm more tired and less "with it". Probably just due to the extra stress, I don't think it's another relapse coming.

Thank you again for all the messages.

Wednesday, September 24, 2003 0:47 AM CDT

Sadly Codi passed away early yesterday morning. It is just so wrong that kids die. Please stop by and let her family know that they are being prayed for.

Dad went to visit Mum today, she's now in the general corony ward and is doing O.K. Since my sister is coming to stay for the weekend she asked if my dad would bring Jes to visit her. I was hoping she would be out this week, I'm hoping that she just forgot.

Dad is a bit worried about work. He has almost used up all of his days off so he will have to take unpaid leave soon, as mum is due back in hospital on Monday to see her back specialist. She has Transverse Myelitis and it has been getting much worse recently.

I'm doing o.k, it's getting colder so my bones are aching more but it's not too bad yet. I moan about it being too hot then I moan as soon as it cools down. I think I should stop being so fussy.

Thank you for all your messages and prayers, they mean a lot to me.

Monday, September 22, 2003 01:15 PM CDT

I got to talk to Mum yesterday for a few minutes at breakfast. She's doing better and is going to be moved to the normal corony ward instead of the intensive care corony ward. They have found that she is also severely aneamic and they are running other tests on her to check if there is anything else going on.

I'm doing o.k, I've been put on calcium and vitamin D tablets as I'm not getting any vitamin D from sunlight.

Thank you so much for checking up on me.

______________________________________

Saturday, September 20, 2003 10:58 PM CDT

We know for sure now that it was a heart attack. My dad has been to see her and she is doing o.k. I just wish I was well enough to go and see her.

_______________________________________

Friday, September 19, 2003 11:53 PM CDT

My Mum has been taken into hospital. Right now we don't know whether she has Angina or had a heart attack. She isn't in pain anymore and she's going to be fine but she will be in hospital for at least 4-5 days. If it was a heart attack it was a mild one, as it would have happened on Wednesday, she has been ill though we obviously didn't think it was this bad.

My dad is staying with me at the moment, he's a bit worried about missing so much work as my mum is due to stay in hospital again, a week on monday.

Please keep my mum in your thoughts.

Wednesday, September 17, 2003 1:12 AM CDT

I hadn't realised it had been so long since I updated, both me and my laptop are in one piece. A miracle!

I had my last gamaglobulin injection last week. I was meant to have two more to finnish the course but as it had made no difference we decided there was no point in doing them just to use up the last of it. We contacted my specialist Prof Daymond who agreed. He wants me to try a different med, Biocranin(?). I don't know what form it comes in, but as he is going to be contacting my GP about it I'll find out soon enough.

The wheelchair clinic people are coming today, to measure me so I can hopefully get a high backed wheelchair. I really hope that I get the chair as it would make life so much easier and less painfull when I'm being transfered.

Hmmmmm...What else? Ewen has asked if he can write silly letters to me. Apparently he has always wanted a little sister, so he is going to do the brother thing properly :) But permission is never needed to send me silly letters.

Thank you to everyone who has signed my guestbook, it means so much to me. If you have time please visit Codi's page as she is in hospital and extremely ill.

Take care of your selves.

Monday, September 8, 2003 0:55 AM CDT

I wrote this yesterday but my laptop wouldn't let me update the journal.

An update from a sweet smelling me :)

This week I have had both a bed bath and my hair washed! I'm getting pretty good at this whole hygeine business. I usually rely on wet wipes to wash as bed baths can be pretty exhausting but not this week. I'm really looking forward to having a bath, all on my own. A hot bubble bath with a good book, does life get any better than that? For my hairloss I've started having brazil nuts to help slow it. I can't remember what is in them that helps but they do work.

Last month people my age got their A level results, the exams you take before leaving high school, it was hard seeing people getting their results on TV as my qualifications are my 1 mile swimming badge and various Brownie badges, and it is going to be a long time before I get to go to uni. Though I feel really left out I thought about what I had achieved, two years ago I slept 23 hrs a day, I couldn't eat and I could barely talk. That lasted for about a year, in December I managed to get back online after 18 months. I've also made friends, online and by mail. To those making their plans for their future it may not seem as I have acomplished anything but to me I have achieved so much.

Tomorrow is tidying up day. For my dad anyway ;) I'm really at a loss to how my room gets so messy when I rarely move. I have a drawer under my bed that I leave open so I can put anything I'm using in their so it is close at hand. Which my dad half emptied last week of all the catalogues I've collected over the last few years (I hoard things) and it is full already. I blame the gremins. My parents don't though....

I've added some links to the kids pages I visit, if you have the time please stop by and let them know that they are being thought of.

Thursday, September 4, 2003 2:14 AM CDT

Just a short update today.

I'm pretty much the same as when I last updated. Things tend not to change particularly quickly with M.E. The main thing that is happening at the moment is hairloss. Two years ago I was put on a pain med that made 50-75f my hair fall out. Luckily I used to have extremely thick hair so I ended up with about average thickness. I changed my pain meds when we discovered a whole list of side affects that we hadn't been warned about. My hair stopped falling out but I didn't really regain what I had lost.

Now my hair has started falling out again, probably due to me being so ill right now. It's not a big worry, but just I'm girly in as much as I like my hair. I ended up cutting it short from waist length last year, and it's just grown to a length I can play with and I don't want to have to cut it again.

Any how there really isn't much happening over here. Please keep Katia in your prayers.

Take care
Cassie

Saturday, August 30, 2003 1:11 AM CDT

First of all please keep praying for Katia who has had a very bad relapse, sign her guestbook and let her family know that you are thinking of them.

Hi everyone
I do actually have some good news today, some friends I have from AYME have won a grant from the Prince's Trust to set up an organization like "Hugs and Hope" and "Make A Child Smile" called post pals. They can only take kids aged 2-18 who live in the UK, and I said I would put up a link here as I thought someone reading this may know a British kid who has a critical illness. The web address is www.postpals.co.uk the site hasn't gone live yet and I still need to get the contact emails they are using but if you know of anyone please tell their parents sbout it. I am really proud of them, they all have M.E, some are severely affected :)

My health has gone down again. I'm getting even more dizzy when I sit up so I have to stay lying down, I also don't have enough strength to use a knife so I'm having my food cut up for me so I can use a spoon. And since I'm lying in my mum's bed when I eat I have apparently been leaving little "snacks" in her bed. Seems my coordination isn't all that great either :o)

My sister's fiance Ewen's band supported Status Quo at a concert in Scotland! They got some great press so I'm plugging them to everyone I know. So go see Fred and tell 'em I sent you :D And a bit of trivia for you, they named the band Fred because they like Bert and Ernie from Sesame Street and they wanted a name that would fit in with their names. Weirdo's.

That is all I can think of for now. Please visit Katia, and take care of yourselves. And you can always sign my guestbook if you like....
Love
Cassie

Tuesday, August 26, 2003 2:12 AM CDT

URGENT UPDATE Please go visit Katia's page as she has relapsed. Please pray for her.


Hello :)

Does the breeze smell fresher? I had my hair washed! It's clean! Woohoo! Shame about the poor seals though ;)

The paddling pool thing was still exhausting but it was a lot better than anything I've tried before. Basically it has two inflatable rings with a dip one side to put your neck, with two parts that go around your neck (that feels as though someones hands are around your neck-eek!) to stop the water from leaking out. I haven't described it all that well, but hopefully I will have found the cdrom that goes with my digital camera and I can pose for a photo the next time it gets washed. It still requires both my parents to help but it's a lot easier for them to manage I think.

I'm still taking the full dose of gamaglobulin though it doesn't seem to be doing anything for me, I still have two months before the trial is over. I always feel guilty about moaning about the injection when I know so many little kids are going through unimaginable treatments. The only thing about the injection I really can't stand is the length of time it takes. It is a large injetion anyway but the solution is so thick it's like syrup, it takes 45 minutes to be drawn up, thank God it doesn't take that long to recieve it!

Any how, I think that's all for now, if I think of anything else I'll write it up tomorrow, I bet you're all on the edge of your seats.
Take care
Cassie

Friday, August 22, 2003 11:46 PM CDT

Hello all

I'd like to announce the engagement of my sister to Ewen :) They had gone to Rome on Monday and came back yesterday. I'm not sure where he proposed yet but she is very happy :) I am a little sad though as it is pretty much certain that I won't be able to attend the wedding and the fact that I need at least one carer with me at all times makes it hard for my parents to help out. But as long as she has lots of photos taken I'll be O.K.

And on to the health stuff.... My doctor came out to look at the lump and decided it was a bone. The problem with that diagnosis is that I haven't always had it and it has both grown and changed shape over the last few months. My doctor is one of those who won't listen to what you are saying. We think apart from cyst it may be a calcium growth as I have a couple on my hands, but we are going to ask Prof Daymond who's my M.E specialist for a second opinion next time he visits.

The weather had cooled down a little here which was good as I was becoming ill because of the heat. I was always close to fainting when I crawled or sat up, not a fun feeling. But now it has decided that it is going to start getting hot over the weekend. I am hoping to have my hair washed at the weekend though, so stay tuned to any environmental reports :p

The only other news is I hate people who make and send viruses. I think I have the one going around at the moment as I know my email has been used to pass it on to other people. If my laptop crashes and I can't get online I have no contact with the outside world at all. Grrr!

Thank you to all who sign my guestbook especially Barbara. Scary wildlife you have in Florida. The most dangerous we get here is a grumpy hedgehog!

Take care
Cassie

Friday, August 15, 2003 0:40 AM CDT

Hello my lovelies ;)

I'm doing okay...ish. I've been trying to recover from Jo's visit but today my sister and her boyfriend are coming to stay until Sunday, so any progress I've made will have gone out the window. But it will be nice to see Jesamine and I will finally get to meet Ewen. I'm sure by Monday I will have pulled out much of my hair and I will be in a police cell charged with murder but I'm sure I'll have fun.

I haven't managed to stick my head in it's paddling pool yet as I haven't been well enough, as though it is my parents who do all the work, just having movement going on around me is exhausting. I have a type of hairspray that you use between hairwashes to keep your hair looking nice, though I'm guessing the "between washes" is meant to be a matter of days not months. I'm not sure which is worse: damaging the ozone layer with the spray or causing an oil slick when I do finally have my hair washed. What a lovely thought :o)

Other health news.... I have a lump on my head behind my ear. I've had it for a number of months and it has been growing. So next week we are dragging my doctor over to come and see me. I know that it is almost certainly a cyst or something but I'd rather be safe than sorry.

Look after yourselves so you are able to sign my guestbook ;)

Cassie

Monday, August 4, 2003 10:08 PM CDT

I had a really great time when Jo visited :) I'm still exhausted (yep I know, no sympathy deserved) but as Mum described me I'm a "happy heap" :D I had a pretty bad day and at lunch time I couldn't sit up so I stayed in my Mums bed. It can take a while for the gammaglobulin to kick in so it's too early to tell yet but I really hope that it makes a difference.

An OT (occupational therapist) visited last week and I am now a proud owner of an inflateable paddling pool for my head! It's to enable me to have my hair washed lying down which I'm really looking forward too. Because up until now we had our own little way of getting my hair washed when I was feeling up to it, which has only happened twice since March/April, ick! But now I will no longer have Mum holding my head up over the edge of the bed while pouring water over my hair with a jug, as my dad kneels next to her with a bucket of water. Very tiring for all of us, but at least none of us needed to bother having a bath afterwards.

Thursday, July 31, 2003 10:48 PM CDT

Mum thinks I'm heading for another big crash as I'm not feeling well and my blood sugar is all messed up right now - I have mature onset diabetes of tthe young (MODY) a pretty rare genetic form (genetics the gift that keeps on giving!)and if I'm ill or have an infection my glucose levels swing all over the place. I'm diet controlled so I can't adjust my medication or anything to make it easier. The main problem being I don't get many symptoms when my levels are too low, which is a bad thing in itself, but as I'm asleep soo much it could be dangerous if it drops too far. So my mum has the wonderful job of trying to wake me on a regular basis.

So at the minute I'm busy resting, if a person can actually busily rest. On Saturday my friend Jo who I know from AYME an M.E charity is stopping by for half an hour. I haven't met her in person before but we've written to eachother for a while. She lives down in Cambridge but is currently in Hull visiting her Mum and they were going to be stopping by Newcastle to shop anyway so she will be dropping in. I don't think that I'm up to it. Okay I know I'm not up to it but it'll be worth it, as I don't know when I'll next get the chance to see her.

Take care
Cassie

Saturday, July 26, 2003 11:05 PM CDT

Some technological tips for you

1. Do not fall out of bed with your laptop. It doesn't do your laptop any good and it doesn't make a very soft landing either....

2. On discovering your laptop is broken, don't try to stick the broken parts back together with blue tac, apart from not being particularly effective blue tack does actually melt.

3. Before ordering a new part for the afore mentioned laptop it is best to check that the part you are ordering is actually the broken part.

O.K three guesses to why I haven't updated in a while!

Apart from damaging my laptop my health has been dropping a little lately. I went back to sleeping 22 hours a day, managed to get it back down to 20, until yesterday which was a really bad day for some reason. I'm becoming weaker and a I need to be lying flat more than I used to as if I'm even just propped up in bed I feel faint. At my worst even breathing is too much movement, though I don't think I can stop that.

Next update will have a bit more info on what I've been up too (bet you can't wait ;) )

Lots of love
Cassie

Saturday, June 14, 2003 7:05 AM CDT

Guess what! I'm not pregnant! I'm sure you are all completely stunned by this, my doctors definately were. There is a bit of a background story before we came to this startling conclusion...

We called out my doctor yesterday as I was still experiencing stomach pain. My urine tests had come back negative and my GP was concerned. So after examining me he called the hospital and arranged for an ambulance to come and collect me. Two ambulance trips in two months, I'm really on a roll now. Unfortunately this time I had to sit up instead of getting to lay down on the trolley. I can't sit up for long periods. My neck cant support me and I sort of end up like a tortoise with my neck trying to shrink back into my body, so by the end of the journey I was in a lot of pain.

Once I got to the hospital, (a different one than last time) I got a bed in a bay to myself. After a couple of hours I finally got to see a doctor, who examined me, asked me if I was pregnant (erm...no)then she asked my parents to wait outside while she examined me again, and again asked me if I was pregnant (really no!) She ordered an xray for me and she thought it was best if I stayed in for at least 24 hours for observation.

When I was in the xray room the doctor there started questioning me about being pregnant (sigh) and wanted to know how I was sure I wasn't (it really depends on whether you believe in immaculate conception) before finally taking both chest and abdomen Xrays. Afterwards I was taken to ward 13. Ward 13 on Friday the 13th really didn't sound all that inviting, but off I went.

After another few hours I finally saw another doctor who broke the news to me that I was definately not pregnant (what a surprise!) and I don't have a kidney infection. He thinks the pain is due to constipation and I could go home. I do have very mild constipation at the moment but that is not the cause of my pain. The pain is on both kidneys and hurts on my tummy and back when pressed which would not happen it was a problem with my bowels. It doesn't seem as though they looked for anything other than a pregnancy or an infection. So now I'm going to have a really hard time with getting any doctors to listen to me now the last doctor has dismissed my kidney pain.

After the 8 hours I spent in hospital I feel so ill and I'm in a lot of pain, and I'm just so angry at the doctors for not listening to me. So I'm going to try and wait it out but if it gets worse I'll go back to hassling the doctors.


Please go visit the family of Colby who sadly passed away on June 12.

Thursday, June 12, 2003 7:08 AM CDT

Another angel earned his wings today. Please could you all stop be Colby's site he passed away earlier and I'm sure his family would appreciate your support.




I've sent another urine sample to the hospital and Mum will be calling my doctor tomorrow to find out the results and arrange for him to visit whether I have an infection or not so we can find out what's wrong. I'm hoping that they do find an infection and there isn't anything more seriously wrong with my kidneys.

When I was taken into hospital it rained on me as I the trolley was taken from the ambulance into the hospital. I was so happy to feel the rain as I haven't felt it in years. The air felt so fresh and alive, it tastes different outside and feels different on my skin. It's strange what you can take for granted, I used to hate being stuck outside in the rain but now I miss it so much. At times it seems as though nothing exists outside of my house. My eyes are too sensitive to light to even look out of the window.

I had a really great birthday. I had sent some party hats and blowers along with some sweets to my friends and got them to take photos of themselves so I could invite them to my "party". Two of them had sent me a big photo album to keep them all in. I want to collect as many photos as I can so I can look back on events as if not the last 4 years have blurred into each other and I don't want for that to carry on happening. I have also been putting up postcards in my room so I can "travel". I got the idea after one piece of happy mail from Kathy was a canadian card she had made so that I could see the world without leaving the house.

Monday, June 9, 2003 1:59 AM CDT

It's been a long time since I last updated and I'm going to have to update in a few short entries rather than in one go as I don't have enough energy.

I was going to do an update about how my kidney had finally gotten rid of the infection but alas since I hadn't touched wood the infection has spread to my left kidney too. I finnish my third course of anti biotics today so we will be calling my doctor and give another urine sample. I'm a little concerned about it as it isn't going and my left kidney infection has developed whilst I have been on anti biotics. The only good thing to come out of this is that antibiotics have always helped with my M.E. Though I haven't improved since before the infection I haven't had a serious relapse either which I'm pleased about. I'm just hoping the next lot of meds I get will clear it up completely.

Thank you to everyone who has signed my guestbook, I am so touched and gratefull for your support.

Saturday, May 31, 2003 0:38 AM CDT

Dear readers

It's Kat (http://a-rainbow.diaryland.com) here, Cass sent me her details to enable her readers to hear how she is.

Had a letter from Jan (Cass’s mum) & email from her dad… Our Cass was taken into hospital for a few hours a few weeks ago with a kidney infection. She's been stuck in her mums bed down stairs since & can't get online, she's was on morphine but doing a lot better now, more cheeky & chirpy as her mum put it!

Also its Cass’s birthday 6th June – don’t forget!

Sending many hugs

Kat xxx

Wednesday, May 14, 2003 0:30 AM CDT

It's been a little while since I last updated, I've still been getting a high temperature on and off, and also a sore throat. I'm past half way with the Gamaglobulin trial and so far it hasn't helped me at all. I'm a little disappointed, maybe something will happen in the next few weeks but if not then it might still be something to try again when my health is a little better as some treatments don't work until you reach a certain level of health.

I was in my local paper on Monday in an article about M.E. It was good, the awareness week got a two page spread which was great. I've typed up a little bit of it (the part about me no less ;) ) and I'll try to type up some more when I'm feeling up to it as it really was a big article.

Monday, May 5, 2003 11:31 PM CDT

I'd just like to say thank you for your messages, they really help a lot.

It's been a while since I last updated and things haven't changed much. I'm still getting temperatures and I'm not feeling great but I'm coping. My arms and hands are a little weaker than they were.

I am going to be in my local paper for M.E awareness week. The photographer will be here in 7 hrs to take my picture. They are using most of what my mum wrote about me so I don't have to go through an interview. I hope it manages to raise some awareness, especially about some of the M.E charities so people with M.E know where to go for support, as information about them isn't always easy to find. Another girl with M.E is going to be the papers young reporter for the week so hopefully the paper will have all sorts of info in it.

Monday, April 28, 2003 1:56 AM CDT

I'm either just having a bad couple of days or I've caught a bug. I had a bit of a temperature earlier it wasn't that high but as my temerature is always low it makes me feel really hot and ill. I think my glands may be swollen but I get sore throats often so again it may just be nothing. It's just that even a small cold could make me seriously ill that I worry about every new symptom I get.

Mum and I have almost finnished writing the letter to go to the paper. We know what we want to say we just need to find a quicker way of saying it, so far we have an essay on my life. If we can cut it by half then we can send it. My prescription for my Gamaglobulin has arrived but this time the needles are about an inch long instead of 1 1/2 inches. Not that I mind shorter needles but as it is an intra muscular injection the longer needles are probably the better ones to use.

If any of you could stop by Colby's page as he isn't doing well right now and he and his family could probably use some support.

Saturday, April 26, 2003 2:23 AM CDT

We are going to work on what we are going to send the paper about M.E awareness week over the weekend. The only thing we have to work out is that I'm not well enough to be interviewed. So we'll have to see whether they want to send us some questions or if they want us to write about M.E ourselves and send it to them. We tried to get them to run an article last year but they didn't. After all it was national doughnut week which obviously deserved more attention.

Wednesday, April 23, 2003 1:59 AM CDT

A new look for my page. Not the most mature of backgrounds but very pretty all the same:)

I had another gamaglobulin injection yesterday, I was meant to have it on Monday but Mum couldn't bring herself to inject me. So far it doesn't seem to have had any effect as I'm more ill now than before I started the treatment. Even if my health doesn't improve I'd like for it to settle and not go down any further. I have friends who have spent many months unable to even open their eyes or speak as they have become so ill and I really don't want to get to that stage.

M.E awareness week is coming up next month and we are thinking of contacting the local paper to try and raise awareness in Newcastle. I'd especially like to raise awareness about how severe M.E can be and it isn't just about being tired all the time as most peoples view of tired is completely different to the exhaustion of M.E. It would be nice if some of the people I went to school with, teachers and pupils, read the article, and maybe they won't give other people with M.E as hard a time as they gave me. Or consider them to be lucky as they get to miss so much school.

Monday, April 21, 2003 1:10 AM CDT

My health was a little worse than usual today probably due to all the activity going on around me as that can be really exhausting. I had a fun day though. At lunch Dad tried to blow up my balloon which is in the shape of a rabbit. He was really having trouble trying to blow up the ears, if he managed to blow up one he couldn't do the other, and it was just really funny. After 45 minutes he had sort of managed to fill the ears and the rest of the balloon looked good so we left it at that. I took a lot of photos of the struggle. I don't think he found it quite as funny as the rest of us.

Mum thinks the dehydration might be a side affect of one of my meds, as it has been building up over the last few months and I'm not in any pain, so she doesn't think it is a kidney problem now. It was also really hot here last week (yes really! Britain had sun!) and my body isn't used to it. The weather has returned to normal now so I'll see if that makes a difference.

Jesamine is leaving tomorrow with all her belongings as she now has a flat of her own. The house will be quieter so I'll have a chance to recover before the next time she comes to stay.

Friday, April 18, 2003 2:47 AM CDT

Jesamine is coming home today as they are doing something with the rail tracks on Saturday, she won't get homw until after 11pm so I still won't get to see her until Saturday but I get her all day instead of just the evening.

Mum is going to call the doctor next week as I keep dehydrating even though I'm drinking lots, I'm also not peeing as much as I should compared to the ammount I'm drinking. Mum thinks it might be something wrong with my kidneys. I hope whatever it is they can treat it quickly, the water must be going somewhere.

Thursday, April 17, 2003 3:35 AM CDT

I'm all ready for Easter now, everything has been sent and Mum is able to relax. I had the idea of making little pompom chicks for people but I relapsed so it was up to Mum and Jes to make them for me. Some friends got a balloon instead of a chick, there is only so much I could force them to make!

I'm trying to find a better way of having my hair washed. At the moment I'm sat in the wheelchair with my back to the sink and I have a funnel type thing around my head. The problem is I have difficulty supporting my neck and I become very ill after having it done. When Mum is bathing me I can wear a neck collar to help as I have my hair washed on a seperate day, but I can't use it for hair washing. Since Mum is disabled as well there is a limit to what we can do about it between us.

Jesamine is coming home on Saturday and staying until Monday as she doesn't have work on Monday. I'm looking forward to it, I miss seeing her everyday though she does wear me out a lot.

Friday, April 11, 2003 0:31 AM CDT

My health hasn't improved, but it hasn't gone down either so I'm happy with that. My only new ailment is being bruised after falling off the toilet. Ouch.

My parents want my GP to give me a full check up soon as I haven't had one for years. Despite being ill with a variety of different things I have a worrying lack of doctors visits. M.E/CFS (at least foor me)is a very slow moving illness. I usually only notice a difference in my health either an improvement or deteriation over a period of weeks or months unless I have the joy of developing another symptom. So although nothing much happens with me it would be nice not to feel as though the medical profession has abandoned me.

Tuesday, April 8, 2003 1:18 AM CDT

I had my second Gamaglobulin injection yesterday, it didn't go quite as well as the first and the area around the injection is bruised, but nothing worse. Though not due to the injections as it is too soon my legs aren't shaking as much though they do hurt badly when I try to stand on them so I am going to stick to crawling for the time being. Hopefully the Gamaglobulin will help with that.

I recieved my first piece of "happy mail" on Saturday, a letter with some stickers, and yesterday I recieved an Angel of Hope. I had been feeling a bit lonely and they really cheered me up.

Saturday, April 5, 2003 1:57 AM CST

It doesn't look like I was just having a bad day and that was the reason I stopped being able to walk at all. The carpet burn is getting better though. I am now wearing trousers under my nightdress and I wear gloves if I need to crawl anywhere. I promise you, this style is going to be hitting the catwalks any time now!

Dad bought a couple of two way radios so that I can talk to Mum with out having to crawl to the landing a call for her, or bang on my floor so she can hear that I need her. Unfortunately I kept picking up feedback from other people using their radios and it was quite loud so I can't keep it on as I can't sleep through it. But I fun playing with my dad on them. They have a broadcast didtance of 3km. Reading the small print they have a broadcast distance of 3km if they are 5 metres in the air and have nothing in the way. I don't think I'll be trying that out!

Wednesday, April 2, 2003 10:40 PM CST

My health is still going down. Today when I tried to stand up I couldn't. My legs have been slowly weakening and since Friday they have been shaking violently and hurting more than usual but today they finally gave way. I'm hoping that it will only be a short relapse and I will pick up again soon.

My mum can collect me from the stairlift in my wheelchair downstairs but upsatairs I have to crawl. I'm getting carpet burn already. My arms are still working though, a little weaker than usual but not too bad.

Monday, March 31, 2003 10:53 PM CST

I had my first Gamaglobulin injection today. I don't usually mind injections but it is an intra-musculalar one and it hurts, but Mum does the injections for me and I trust her so it wasn't too bad. I hated the size of the needle though, I wish I hadn't looked. I'll be getting the injections weekly for a three month trial and if they help at all I will carry on with the treatment.

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