Emily Collingridge shares her experience of M.E.

On Facebook there is a group named 'YES! M.E. is a genuine condition. Unite to build awareness!'. Today, someone posted this. It made me cry. I've never been as dreadfully ill as this girl is. I've been close, twice. What I went through was torture; I cannot imagine what she lives with every day of her life :(

"Severe ME is utterly devastating. It's time for proper research and proper care". That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.

(Permission to re-post)

Emily's Appeal

It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope."

By Emily Collingridge 2010-2011

You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info."

I'm cursed!!!

Or this computer is cursed. Probably the computer, since people always say the user is the problem :P

Ok .. deep breaths .. let's try and explain from the beginning. 

Incidentally, anyone actually reading this, I'm not seeking help. I have posted on forums for help with these issues; the quick fixes are NOT the answers.

This computer was purchased from ebuyer.com last June by my husband for myself:

ASUS X5DIJ Notepad PC

Windows7 64bit

4GB RAM

C: = 58.2Gb ... 16.1GB free

D: = 160GB ... 131GB free

Graphics: Mobile Intel(R) 4 Series Express Chipset Family

DVD: HL-DT-ST DVDRAM GT30N

Beautiful whizzy computer to start with. After about a month I noticed that it was slowing down. I hadn't realised that the C drive was so limited, and had installed everything I'd added to the machine on the C drive, so it was understandable that it slowed down. So, I uninstalled most of what I had installed and re-installed it on the D drive.

The computer was still slow. I was having other problems too though. 

- The sound always worked when turning the computer on, but frequently it'd stop working while the computer was on and being used. 

- Programs wouldn't respond the first time I asked them to open, so I would have to ask them twice, and then multiple editions of the program would open. I have always known obviously that you're supposed to wait for a program to respond, but when it doesn't respond after ten minutes you do tend to think you didn't click it properly the first time. (I am not exaggerating).

- The computer was stalling. Typing would be delayed. Clicking things would be delayed. There was a delay when switching between programs. When typing in IM messages would take a few seconds to be sent. You get the idea.

I had no idea what to do to start with. The computer didn't come with installation disks, and as far as I could tell had no hidden partition with the installation files on it. I had rescue disks, or whatever they're called, that Ian created when the computer first arrived, but no idea what to do with them. One of my friends did a little research online and discovered that Asus has an inbuilt functionality that allows you to return the computer to factory settings. So, a few months ago, I returned the computer to factory settings for the first time.

I had backed up my D drive in case returning to factory settings erased it, but it did not. What had not occurred to me that time around was that by not erasing the D drive, it left all the programs I'd installed there, still there. So, when the computer started to stall almost immediately I was at first puzzled. I talked about it a bit with another friend, and started to realise that the computer may be struggling with loading programs from the D drive, as it has to run them on the C drive. My hands are somewhat tied by the limited space on the C drive though. So, once again I returned the computer to factory settings, and I deleted all of the programs from the D drive this time.

This time, I decided to install programs at no more than one each time I had the computer loaded, so that I'd be able to see if any particular one was causing the stalling. The first couple of days I just did that, used my email, and probably Facebook or whatever. A day later I suddenly realised that I was unable to save files. With a bit of experimentation I found that I could not save files to the folders in my D drive. I could create new folders, but couldn't save into them either. I could save to the D drive itself and the C drive though. The folders for some reason were marked as read only, and no matter what I did they returned to read only.

Now, as an aside. When the computer first arrived Ian gave it the same name was my PC. Only once have I had both my PC and laptop on at the same time, but when I did they were clashing with each other on the network. So with the last re-install I had decided to change the name of the computer .. just to solve that little issue you know. Well, as it turns out, the D drive was looking for the computers previous name, and there's no way to teach it the C drives new name without reformatting it too *sigh*. Soooooo .. once again, I returned the computer to factory settings, and gave the C drive the name it had previously again!

So, while I've solved a problem I created, I've not solved any of the original problems, and new ones are cropping up!

My DVD drive is not working. Not only is it not reading my CDs, but when I then try to use CDs that have visited this computer, in another computer, they are coming up as being blank. I've lost my copy of Photoshop and Office because of this :( I dare not put any other disks near the machine. Apparently it means the laser is pointing the wrong way, or something like that.

So, when my step mother sent me the information for updating the art groups website, I was faced with somewhat of a problem. I couldn't install Frontpage (don't laugh .. I love that program), and being completely brain fogged stood very little chance of hand coding it. I tried downloading the trial version of CoffeeCupinternet *scowl*. This meant I couldn't upload the pictures for the website to Photobucket (our hosting space is very limited). So I came back to this laptop, uploaded all of the pictures to Photobucket, saved all of the urls for the pictures, and the dimensions of the pictures, to a notepad file which I then took back to my old laptop. On the old laptop I could then create the updated website files, all be it without seeing whether the pictures worked or not. Saving it to the external harddrive again, I then uploaded it from this laptop. Surprise surprise ... the website didn't work. Being way too foggy to understand what the frell was going on, one of my friends had a look and worked it out for me; in creating the files on the external hard drive Frontpage had decided to give the full hard drive urls for each link. Pfffft. So a bit of hand coding was required, but thankfully not much. Website fixed.

Meanwhile CoffeeCup HTML Editor. I absolutely love CoffeeCup. They make fantastic software, extremely easy to use, and very cheap. I've never tried their HTML Editor before though, so I decided to give their trial version a try. Downloaded it. Problem .. it no workee. When I try to use the visual editor part it all freezes up. I have reported the problem, and they are working on it. It is just my luck though that I have managed to encounter a problem that they're vaguely aware of, but haven't worked out the cause of yet. Hopefully my dire straits can help them fix it though.

Friday 27th May 2011

Ok, it's Friday and I've not updated since Monday. I'm having problems. Not just with M.E., but with my computer too. I'll post about my computer separately though. My memory is just so soooo poor at the moment, that when it gets to the end of the day I honestly can't remember what has happened throughout the day. The intention of this blog was to give a blow by blow description of each day, for my reference, and for printing for the DWP in the future (for my appeal), but I really honestly can't think at the end of the day. 

I've actually had quite a busy week for me, which has left me drained and exhausted every single day. Don't ask me what I did Monday; it seems ages ago now. Tuesday though I had the blood test for gluten intolerance, followed by an appointment with Dr Clark. The blood test went ok. But then I had to wait 50 minutes to see the doctor (it was supposed to be straight after my blood test). With the music in the waiting room making me giddy, by the time I left the surgery I felt so ill that I came straight home; I had intended to go food shopping. Well, Doctor Clark has confirmed for me that I do not have any kind of lurgy in my groin, but may in fact be mosaic-ed (I thought only men could have mosaic-ism). She wrote my sick note for me too. It's the first time she's done it, so she was looking at the computer for reference. For some reason, last time I saw Doctor Niklaus he wrote on the screen that I'd be able to return to work soon. What the frell??? How? Holy clap. If only! I'd give anything to be able to work :(

Ummmm. Wednesday. What did I do Wednesday? Oh yes! Wednesday I had an appointment with Citizens Advice Bureau. I was hoping to seek their advice on finding a representative for my ESA appeal. I was told that they do not represent, and that M.E. is a non-existent illness anyway. So I came away exhausted, upset, frustrated, and went straight to bed. Wednesday evening I spent trying to update my step mothers art groups website.

Yesterday I did way more than I should have. I actually went into Lichfield. I've been struggling with my glasses. I bought two pairs last year, both from online vendors, but not the same one. On one of the the plastic nose piece thing came off months ago, so I've been wearing the other pair. This pair though has become so scratched that I constantly feel like I have something in my eye. So I decided to take the other pair to Specsavers yesterday to see if they could offer me any advice. Advice? No. Fix em? Yes! For free! Hoorah :) I also had four of my watches fixed at Timsons, and banked a cheque with HSBC. And then fell over in Gregs. Came home. Went back to bed.

I've been having severe problems sleeping recently. The pattern my body has been forcing me to live with was being awake til about 3am and then waking up at 11am (unless the cat woke me up earlier). I have tried everything I could to force myself to get to sleep earlier. I've gone to bed at 11:30pm and just laid there for hours. Goodness knows why. Last night I went to bed just after midnight, and I slept all the way through to 9am. Yay me!!!!

This morning I spent half an hour sorting out boxes in the garage. Someone from Freecycle was coming to pick up a load of stuff that neither Ian or I would have any use for. So, I sorted that and took a rest. After the lady came to pick it up I took our patio roses next door, so that Hazel can enjoy them for the summer :) The rest of today will be spent resting ... after another blog post anyway.

Scuse language ...

Dr John Green-Smith posted this to one of the Facebook M.E. groups earlier today. Made me chuckle.

My friend and I have a pet name for CFS - Completely Fucked Syndrome. I'd like a logo for that one too :)

Labyrinthitis

I have labyrinthitis again at the moment. It's really really annoying when I get this. I usually know it's coming because for a couple of days when I sit up or lie down the world will spin. Then it gets bad; when I sit up I will land flat on my back without realising I'm moving. Trying to walk is a nightmare. Thankfully I don't have it all that badly at the moment, but am restricting myself to the house just in case. The first time I had it I was like the guy in the clip I've linked below. You've probably seen this clip before. I'm not sure whether the guy in the clip is drunk, which is the general assumption, or whether he does have a problem such as labyrinthitis or something neurological is going on ... I'm just using it to illustrate how I can be. I have frequently been mistaken for being drunk when I venture out with this condition.

The clip.

Wednesday 18th May 2011

Ok, I'm having a bit of a rough time. I know I've missed updating for a couple of days, sorry. I'm fatigued to a ridiculous level, struggling to function and struggling to think. I have this weird thing going on at the moment whereby when I stand up everything around me starts swimming. If I try to walk I am stumbling and bumping into things, because they don't look like they're there. I'm having to close my eyes in order to make my way around the house (I seem to have an amazing talent for this). It's not labyrinthitis; when I have that I land flat on my back before I know anything is wrong. I did only just recover from another wee bout of it last week mind you. 

One of the things I hate most about CFS is constantly questioning what is happening to my body. Continuously wondering if it's just another CFS thing, or whether it's something I need to actually see the doctor about. Some of the time it's both .. ie thrush. When will this torture end? I feel like this illness is one huge long punishment for something ... only no one ever told me what I did wrong :(

So what's been happening? Not much. What can I remember? Not much. So maybe I've been doing lots and forgotten it lol. 

Seriously .. I had an appointment with mental bloke yesterday (my pet name for my CPN). Ummm .. I can't remember much of what we discussed now. 

Oh! I phoned the DWP yesterday too. My appeal form has been received, so I have been placed on the assessment rate until my appeal. *fingers crossed*.

Sorry this is so naff. I'm really brain fogged at the moment :(

Sunday 15th May 2011

Well, I woke up at 9:30 this morning. You know, I can't remember much of today at all. I remember waking up early, taking some pics in the garden, and then going back to bed. I read some too. I've not been in much pain today. Read a lot and slept a lot. And that's about it.

Sorry.