A Child's Perspective of having a disabled parent...

Growing up with a disabled parent...

'It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.'

 Charles Darwin

When I was growing up I didn't think there was anything different about how I was raised. My dad was in a wheelchair, he had nurses to care for him, and they would take us to school. (My old carers were some of the same few- unbelievable but true). He never was able to play football with us in the garden, or even get into the garden really without great difficulty.

He spent most of his time in bed, or on the couch or at his computer, tinkering with whatever project he had going at the time. This is how I remember him in my childhood, or at least the good bits. Things went slightly downhill between us all when my parents got divorced – he became pretty much non existent- but I still knew my dad wasn't what other kids had. Or rather I started to realise as I grew up. But that didn't mean anything less, he was still my dad in whatever crooked form he was in. And I loved him regardless of his disabilities.

The point I’m trying to make with this blog is to try and take some of the guilt away from those in the M.E. community, those who have disabilities and have children, and feel the constant pounding of guilt that they can't do and raise their children the way they had intended or envisioned.

I grew up with a dad who was disabled, but it was his own fault. He didn't take care of himself, he had diabetes and messed up enough that he is now near unable to function daily. He told me himself just a few weeks a go that he doesn't think he'll see too many more years now.

But I grew up with this. I can tell you that my mother said she never envisioned bringing us up how she did, after all she was married when she had us. But when you have a parent that isn't like the other parents, can't meet you at the school gates or needs you to be quieter when they are doing something, or they are feeling ill. You, me, as a child, adapt. You think nothing of it. From a child's perspective I never felt like I missed out on anything, because he had a disability.

I am now in the position where I am myself disabled and if I had a child I know how freaking hard it would be and I have some sympathy, that even if he didn't take full responsibility for us, that my main parent was my mother, it must have been HARD.

As a parent you have to adapt, you can't hold onto the expectations you had, the promises you made to yourself when your child was brought into this world, because life doesn't work like that. You have to adapt to the here and now and work your way through it as time goes on, constantly adapting for yourself and your child.

From a child's perspective, I never lost out. Yes I looked at other dads with envy every once and a while but as a child I knew who my dad was. Where he was. And as a child I thought of nothing less. He was how he was, and I knew no different.

So what I’m trying to say; Give Yourselves A Break!! Your children love you know matter what. Yes they might worry about you as they get older and become more aware of your limitations, and yes they might occasionally envy others. But YOU are their parent. You brought them into this world. And you are their constant. No matter what disability you have, that you were there in the first place will mean so much more in the long run than if you bury yourself in guilt so much that you start to pull away from them.

My story is slightly different, I have never had a great relationship with my father since my parents have divorced. Not because of my mother and her raising me, but because I began to see what the type of person he was for himself -his disabilities were negligible. I didn't like what I saw, and I distanced myself, and we have a fits and starts relationship now. I'll check in every few months, or just recently every few weeks. But that has nothing against his disability. That is him and the bad choices he's made.

But he's still my dad, and disabled or not, he always will be and I never missed out on anything because of his disability. I missed out because he could be at times, a difficult person.

So to those parents who feel they have in some way failed their children by being ill, by having M.E., by having Fibromyagia, by being disabled in some way. Don’t be so flipping silly. You are doing the best that you can do, and when you're kids grow up and have some of their own, or even before that and it hits them that you did everything that you have done for them whilst being so ill they will love you all the more. Because they will know the added pressure that you had to deal with and that you didn't give up or give in.

ME and how we try to look and feel our best, with minimal effort :P

So a dear friend has asked me to do a blog on Make Up and Hair and how to keep things nice and easy for us that have little/no energy. I have to say I am pretty low maintenance from the get go, brutal honesty, I am pretty at best on a good day, I’m not saying I’m a total dog or anything but we all need a little help here and there.

So between us we have come up with a few Make Up and Hair tips that can help us lot, women mostly, from feeling less grim.

Make Up

We have come to a census between us that Collection 2000 is brilliant, and cheap!! So here are our best picks:

• My friend swears by 'Collection 2000 Ultimate Fix Compact Foundation' it is a 3 in 1 of concealer, foundation and powder and she says it takes about 3 seconds to put on and makes you look great. Also its only around £4 or so.
• I'm more of a 'I-can't-bare-anything-but-the-minimum' kind of girl so I go straight for – 'Collection 2000, Illuminating Touch Light diffusing concealer' – God send in my opinion, put some on your raccoon circles around your eyes and dab it into your skin with your ring finger. One application usually does the Trick, but a tiny bit extra will cover a little more, any more than that and unless you use a setting powder (too much effort) you're going to get lines in your concealer.... not a good look.
• Also if you want to add a little definition to your eyes go straight for 'Collection 2000 Longer Lash 100% Waterproof Mascara'. It does what it says on the tin, I usually put a little on my upper eye lashes and leave the bottoms to do there own thing. Plus if you forget/can't be arsed/too exhausted to take you're make up off, this mascara wont move, wont smudge or anything. In fact mine has been known to last a couple of days – grubby I know but when you go into crisis mode you eye lashes are the least of your problems.
• I would also recommend a GOOD moisturising cream for your face before you put anything on, It needs to be thick and good quality and I swear by the oldie 'Nivea crème'. Its a nice base, deep moisturiser and you only need a little pot for your face. And it will last you all day, just put it on your forehead/nose/T-Zone area, cheeks and chin :) You don’t need anything fancy or UBER expensive, you need something that has been tried and tested for years and will work, and is above all EASY!!

Hair

Hmm this is where me and my friend could become divided. I have carers who come in 3 times a day and they blow dry my hair to perfection. BUT even if you don’t the help there are a few tips that we can think of that help immensely.

• A good conditioner, a thick one again, I use 'Tresemme Salon Silk Shampoo and Conditioner', I get my carers to shove it on all over and then it gives me a rest for 5 minutes whilst I wait for it to do its thing. PLUS if you use a good conditioner, and they don’t need to be expensive, in fact mine is usually on offer pretty regularly in Wilkinson’s, it helps get the tangles out, so less effort with brushing.
• Whereas my friend uses Alberto Balsam from the poundshop and says they're great! Only a quid each and last forever, she says 'I have strawberry scented and they smell so good, the conditioner is particularly amazing and leaves your hair soft with hardly any tangles to comb through'.

• 'Frizz-Ease Hair Serum' hmm, this is my suggestion again and I have carers, if you put a couple of drops and smooth it through the ends of your hair first BEFORE lightly running your hands through the crown area, then more manageable hair is right before your eyes.
• We both think that Dry Shampoo should go down for those of us who can't get out of bed/haven't got the energy/or are in a bit of a pickle. We both use 'Batiste Dry Shampoo', just spray it at your roots that are getting greasy, rub slightly and then wait 5 minutes (good rest time), then brush it out. Easy As and you'll find that your hair has more volume and looks less icky. WARNING: This is only a short term solution, to prolong the time between actually having your hair washed properly. Don’t make the mistake of using it for too long in one go, 2-3 days Max I would say. Because the build up WILL make you look like you have a scalp condition that needs urgent medical help :P
• If you want to avoid brushing your hair daily and getting knots in it then wear your hair in either a bun or a plait.

Body

Again we both have some of the same ideas and some different.

• A strong smelling shower gel or body wash. If you can't get to the shower the next day, you can still smell it on your skin – although you do need to still have a wipe around if you catch my drift!!
• Which bring me onto my next point of call and one both of us agree heavily on- EMBRACE Baby Wipes like your best friend. They can give you a wash, take make up off and just generally perk you up a bit. Especially if they're cold, cruel to ourselves but true. And you don't have to go through a whole wash routine which just can take too much on good or bad days.
• A MUST is - Radox Muscle Soak- It does what it says on the tin/bottle whatever lol. Bath + Radox muscle soak + 5/30/60 minutes and you are like my dog after a doggy massage, flat out relaxed and achy free. (Try not to get your hair in the water though pin it up or something because its not good for your tresses.

Other awesome idea's.

• Cocoa butter for silky smooth supple skin that smells lovely
• Simple do a lovely Toner which takes off make-up and leaves your skin feeling fresh as a daisy.
• Preparation H clear gel, commonly known as "pile cream", this wonderous clear gel in a tube works by tightening the skin. Used under the eyes with careful application will work wonders on dark eye circles and puffy eyes. It dries clear (but noticeable) so put it on at night, wait till it dries, go to sleep and then wipe off in the morning with baby wipes. I don't use it all the time and wouldnt recommend it for everyday use.
• Impulse body spray. They have a huge range of scents, they are reasonably priced and if you have to pop out or if someone is coming round and you havent had a bath/shower/wash a quick spritz of Impulse and you smell delicious!

Miscellaneous

• Another point out is that 'Optrex Refreshing Eye Drops' are a wonder to behold. Again, they make your eyes look brighter, and generally less tired, and they will probably wake you up a little as well. WARNING – DO NOT INJEST THESE DROPS, or over use them.Once a day max.
• Collection 2000 do the nicest nail polishes. Treat yourself to your own "manicure" by getting a bowl of warm water and putting a couple of drops of baby oil in it, let your hands soak for 5-15 minutes in there, very relaxing if you've been doing a lot of typing, writing, knitting etc. Simply dry off your hands and then apply some polish. I've been having fun with the latest trend of crackle effect and my friend has also used Mylene Klass nail foils which are time consuming and tricky but looks brilliant when done, a real work of art on your nails!
  
  
  
  
  So these are a few of the things we have come up with that can make our lives easier, nicer and some just to pamper ourselves when we need a pick me up and I hope that you can have a good look through them and add your own suggestions to the comments below.
  
  
  
  

THE WORLD HAS NOW OFFICIALLY GONE INSANE, And I am ASHAMED OF IT!!

Okay Elle, take a deep deep FREAKING DEEP breath. Calm, thinking calming thoughts, think of the ocean, think of Aberystwyth, think of the good, the nice and all things fluffy. You need to remain Calm.... Callllmmmmm.

I CANT FREAKING DO IT BECAUSE THE WORLD HAS GONE INSANE!!!

Okay so you're probably wondering What The F00k I am going on about, and don’t worry, I’m gonna tell you. A couple of months ago, as you all know by now, I was in hospital for 2 solid weeks in which I had to be put on a feeding tube. My swallowing reflex had failed for the umpteenth time and I had to horrid, horrid, and one more time for effect, HORRID, experience of having to be fed by a nasal-gastro tube. Tube gets inserted down your nose, pressed through your throat and down into your stomach so that you can receive emergency nutrients. EMERGENCY, MEDICAL, INTENSIVE CARE!!!

But oh, no, people. The World Has Gone Insane.... Because people are now using this as a DIET!!! They are willingly having tubes put down their throats so that they can lose up to 20 pounds in 10 days. BRIDES TO BE, are getting so desperate to get thin and into their wedding dresses that they are putting themselves through TORTURE. And to be honest this ISN'T even what I’m most infuriated at.

It makes a mockery, a DAMN MOCKERY, of everything I went through, everything severe M.E. patients go through, it makes a mockery of everything any extremely sick person has gone through when they are incapable of feeding themselves and are forced to be fed by tube. I still have a scarred throat from where my tube was forced through my reflex. SCARS, For Freaks Sake. I was practically starved because I couldn't swallow, there are M.E. patients who are so severely effected that they have no CHOICE, than to be fed by a tube.

To Quote:

'"It is a hunger-free, effective way of dieting," Dr Di Pietro said. "Within a few hours and your hunger and appetite go away completely, so patients are actually not hungry at all for the whole 10 days. That's what is so amazing about this diet."'

Surely it can't get any worse... au contraire mon ami

'Di Pietro says patients are under a doctor's supervision, although they're not hospitalized during the dieting process. Instead, they carry the food solution with them, in a bag, like a purse, keeping the tube in their nose for 10 days straight. Dr Di Pietro says there are few side effects.'

So lets break this sick sick thing down a little bit.

1. This is actually happening
2. This makes a mockery of every sick person fed through a tube on this planet
3. A DOCTOR is endorsing this as 'amazing'.
4. Hunger and appetite -basic human essential skills- are taken away for a long period of time (I had a flipping nightmare starting to eat again after mine was taken out)
5. The 'patients' are NOT hospitalised.
6. They carry their food solution around in their HANDBAGS!!!
7. And their tube is kept in for 10 days straight.
8. Oh, and the doctor says there are few side effects other than bad breath.

WHAT THE FUCK!!

I'm sorry that people feel so insecure about themselves, that woman running up to their wedding day feel so insecure about themselves, but SERIOUSLY??!! Is THIS what it is coming down to?

I don’t care, to be honest what brides do to lose their weight (the woman in link looks positively gaunt anyway) before the big day, but to have this done to themselves, to have this done when there are people out there where this is their only way of surviving, it makes me SICK. Its not 'amazing', its not fantastic and it DOES have side effects. It plays on insecurities, it makes a MOCKERY. And I can't stress that enough.

Further on in the article it says that this diet has been around in 'Europe' for years, and that the woman who they interviewed said she felt 'tired' and 'Sometimes I had to make excuses to people who were asking are you sick? And I was like, 'No, I'm not sick, I’m not dying, I’m fine''.

And the kicker, this so called Doctor is charging $1500 for the privilege.

When so many doctors in this world are fighting against diagnosing M.E, when so many young people are dying of M.E, and CD/FND, and lives are made UNBEARABLE, by diseases such as Fibromyalgia, Lupus, Cancer, Dementia, Altzeimers, Asthma, Diabetes, Creutzfeldt-Jakob Disease, AIDS/HIV, Haemorrhagic fevers. NOT TO MENTION, the flu virus, and all of the 'common' things like surgery, and neonatal babies who require feeding tubes. And I haven’t even touched the surface. Doctors are fighting against OUR conditions, yet there are those out there who are willing to do and encourage this...

But what happens if people start to take this too far? They want to lose MORE weight, they want to continue in this 'lifestyle', or my god strike them down, those people who are using this as a way of getting sympathy? Where will this end? It Wont. Because now that it is out there, and people are becoming more aware of it and it sickens me that I have felt the need to highlight this as well, and I better not hear of anyone doing this because they heard it from me so help me god, but will this ever go away? Or is this going to be just another fad diet? If it is exclaimed to be so easy, so effortless and these woman and men want to look their best, for the BIGGEST day of their lives, then is it REALLY going to go away?

I fear it won't and the mockery will continue.

A woman walks down the street with this 'diet' in her handbag and bumps into a woman who also has a feeding tube in, hers is in a backpack, or tied around her waist. And the first woman says to the second 'OMG you're on the same diet as me?? Isn't it so fantastic?! I have literally lost 20 pounds in the past 8 days alone!!, How are you finding it? How much have you lost?' And the second woman turns around to her and says, 'I have terminal cancer/M.E, I've been let out of the hospital for an hour so I can see the sun. So I can see my children at a café instead of a hospital room. So I can say goodbye to my loved ones in a place that isn't sterile'...

What would you do?

I am SERIOUSLY asking the question, what would YOU do? Would you even see the pain and suffering that people go through and that they NEED these feeds to LIVE? Or would you just see a quick fix to get into your wedding dress?

I would be ASHAMED of myself. Ashamed and asking for forgiveness, PROFUSELY.

But I wouldn't even do it in the first place. THATS the point!

Source: http://abcnews.go.com/Health/diet-brides-feeding-tubes-rapidly-shed-pounds/story?id=16146271#.T41AVVGm8fU

Stubborn Streak, and the decisions that shape a life time

Before I was ill, I can't remember having any cares in the world. Or at least none that truly in the grand scheme of things mattered. I was 16, I caught Shingles and from there things went down pretty sharpish. My Conversion symptoms started pretty soon afterwards, and looking back, so did my ME. I think when I say I was one of the 'lucky' ones for it to come on gradually, I say it with a grimace. I wasn't lucky, I still had two incurable conditions, it just prolonged everything that much longer before the inevitable happened.

Before I was ill, I could go out and have fun, I had energy like you wouldnt believe. But even then I was a quiet type of person, I was shy with others and unbelieving in myself. When I got ill, I became a different person. You quickly realise that you are being given a choice in life. You can either fight it, with everything that you have. Or you can succumb to it. And I chose the former. I was 16 when I started getting ill. I was betrayed by my bestest of friends in the midst of it all. Something I dont think I could ever forgive them for. But after being laid out in a hospital bed for two weeks out of every month, I chose to fight whatever was happening to me.

I started to change, from the shy, unassuming person. To somebody that on somedays I wouldn't like to go up against. When I get mad, I get mad. When I get hurt, I shatter. But it always comes back to te decisions I made when I was 16, when I was 17, when I was 18 and lastly when I was 19 and fighting to finish my A-Levels. I made the conscious choice to become a different person and it was only after I left home and went to university that the full force of that decision hit me in the face.

I made the decision to be a self sufficient as possible, I may be paralysed from time to time, one year out of every 2 or 3. I may be prone to unpredictable bouts of 'twitches', that more often than not lead to a seizure and land me in hospital for a couple of weeks. I might even be bed bound as I am mostly now. But I made the decision to live my life like anyone else would.

I was going to go to university. I was going to graduate. I was going to get a job, earn a living. And I was going to settle down and eventually have a family. Well all good intentions as the saying goes. I am at university. I am going to graduate, no matter what it takes me to get there. I may have already missed my chance of having the family, but I realised something this time around.

Life is flexible.

Life is flexible if you want it to be and are willing to allow it to be.

I am at university, studying my degree, but i'm at home. I am going to graduate, but i'll only be able to be there for the day unlike most of my peers who are taking the chance to have week long last hurrahs. I am going to get a job, even if that job is something i have to do from home, I consider my Blog my job if i'm honest – the cause of trying to get others to understand where I and millions of others are coming from is my job- and I will try my upmost to be worthy for it. And you know what, I might even meet a nice, understanding bloke who is worthy of me and I am worthy of him in return. It might happen. Who knows? Who REALLY knows whats going to happen in the future? But my plan is to be as flexible in my endeavour to reach my goals as possible... AFTER I graduate that is :P

After that I will be taken where I will and do what I must, and meet who I am bound by whatever fates to meet. I made that decision, at 16.

I'm not going to say it was easy, ask any one of my family members and they will tell you I was a nightmare for a while. But something along the way something clicked. I was told by doctors I would never finish my A-Levels and I did. I was told I would never go to university and that I would never finish, I have and I will. And through the past few months I have been shown that I have what it takes to do what I want in life as long as I stick to being flexible in how I get to where I want to be.

I think that 'something' that clicked was my stubborn streak.

I may someday, somehow walk among others looking as normal as you or they. Even with my ME I may reach a point where i'm not stuck in my bed, ever conscious of pressure sores, that I could go out and down the pub for my pint of Lemonade. But that wont change who I am inside, or compromise my principles and morals. I am a disabled person whether you choose to see it or not. I'm not ashamed to say that. I am DISABLED. I just happen to have varying degrees. And its now my job to make sure that those that who take the time out of their lives to read this blog, understand that there are people like me out there. We aren't invisible, we're just hard to see sometimes. But if you take the time to look and learn, then you become part of something amazing. An amazing group of people who, no matter the odds, are fighting for themselves day to day to day. And I am proud to be one of them, one of 'US'.

And we are fighting for a cure, a diagnosis, a life as well. A life just like you are.

Finally i just want to say THANK YOU to Freya, who tagged me in this photo on Facebook yesterday, I'm not ashamed to say i welled up a little, but i appreciate it so so much that you put this on my wall. Cheers Freya, you made my day :)

Doubt - that insidious feeling...

Doubt - that insidious feeling that taints everything around you, and makes you feel like you can't touch the sky when you're running and ready to jump for it.

I have Doubt, in a big way. My dissertation deadline is getting closer and I am getting more and more exhausted, I am getting to the point where my nose is up against the wall. I am nearly half way through my dissertation, I only have 17 days left till it's due. But I am also aware that I am writing this on Friday the 13^th, not that I am supersticious... much.

But I am getting to that point where I am doubting my ability to continue my work, whilst fighting with this illness. I have Physio once a week and it wipes me out for days afterwards. I am having loads of visitors from Social workers, to financial advisors and assessors to a charity trust who wants to help me hire my own employee -That Personal Assisstant who can be my carer and take me places - and they are all taking energy away from what I should be concentrating what I can on which is my dissertation. But they need to do these things Now. Today. Right this minute. So this is what I'm doing. I am resting in bed 24/7. I am taking my meetings from bed, I am writing my dissertation from bed, I am eating and sleeping from bed. I am napping inbetween writing paragraphs, I am napping inbetween meetings and I am sleeping through most of everything just so I have that little smidge extra to concentrate on my dissertation.

But the doubt is there. My university has a NO EXTENSION policy, on any grounds whatsoever. This dissertation is due on the 1^st May. No exceptions. At this point I'm not sure whether its going to be great, i'm not sure whether its even going to be good, I am betting on just below average if i'm honest. BUT I just want this dissertation done and in. So that I only have the 2 extra essays due 1^st June to contend with.

I know it was my choice to fight for Graduation, to fight to finish my degree, because I am a hairs breath away from finishing and I know if I were to stop now I would never forgive myself, or forget it. I would regret it for the rest of my life. I KNOW I would.

But the doubt is there. Am I going to get this dissertation in on time? I don't know, I REALLY REALLY don't know whether it's going to get in on time. BUT I am trying my damned hardest to make sure it is!

My mother has always said that 'you can only do your best', and I live by that. I am doing my best, I am doing my best to finish university. And I going to run with it.... or at least push my chair towards it with everything I have!! Because I dont want to live with regrets. I dont want to be sat at home on the 10th of July and be watching my friends graduate through a computer screen. I want MY FRIENDS all over this country, to watch me get up there and graduate instead!

If I fail to get it in, there is no way I am not going to feel utterly gutted!! But I will know that I tried my hardest!! Because even if I have to run myself into the ground and have to be pushed onto that stage to get my scroll and have my photographs taken looking like a freaking racoon because I look that bad (actually no I promise myself that I will buy myself a decent concealer should that happen:) but even though the doubt is there, I am going to put it down to major Friday the 13^th jitters.And in the end, my dissertation will be finished at some point even if it isnt in by the 1^st May, and i'll go and get it bound and I can still be proud of it, that the time, effort and EXHAUSTION, that has gone into that piece of work is so immense that I dont think i'll even care if I get a rough mark/or it hasnt been marked. I'll have peace of mind knowing that its done. And Bound. And has my name on it, so that I can put it on a bookshelf and take it down every once and a while, and have a read through it and cringe at how bad it is.

But I think with everything I am contending with, how fast I seem to be going down hill, how many more bad days I am having to good, that ANYTHING is better than nothing. So I might have only got 5000 words done so far, and still have 7000 to go. But I got that far at least. And even though I'm doubting myself and doubting the finishing line, i'm not giving up until 2.30pm on 1^st May. Because THAT is when it will matter.

After every post I write my friend and co-admin on our town's support group bumps this message up the page:

So I think i'll take that, and push myself with it as far as I can go.... until I really am in the toilet. Because to me, getting my degree finished is worth it. I owe it to myself, my family, my Director of Undergrad Studies who has given me the chance to finish from home, I owe to my favourite lecturers, Dr Stoddart and Dr Maddrell, even if the latter won't be there. I owe to everyone and myself who has given me support over the last 3 years and especially over the last few months. So I have my doubt but i'm not letting it get in the way of trying my hardest to get where I want to be. And that is my graduation ceremony.

Even if I do look like a racoon :P

P.s – it is now 23.53 on the night of Friday the 13^th, Hours after I initially wrote this post. Update, I have added to my dissertation by approximately 700 words... deep breath and out. If i minus the 10% lee-way i am allowed i am now over half way there!!

Carers: What would we do without them? And what do we do when we get a bad one?

So Monday is going to be a big day.... I have new carers coming in... Again.

I have been through 2 care agencies already and now I am onto my 'long term' team, who will be with me for 12 weeks.... Because THAT to the disability world is 'Long Term'.... Yeh, thats what I thought too....

SO yes, first I had my emergency care team, they were with me for 2 weeks, then I had my START rehabilitation team whose goal was to stay with me for 6 weeks..... they have lasted 2. They have given up and are going home... no i'm joking really, they did my assessment and have realised I cannot be rehabilitated in my current condition... Well NO SHIZZLE SHERLOCK!! Seriously they were lovely ladies, bar one -if you're reading you know who you are and what you did!!- but the whole system is mental, and I mean more mental than I am right this second. I have Paralysis from the hips down, and I have mild to severe (apparently according the ME Association) M.E, and they actually thought they could 'rehabilitate' me within a few weeks.... I laughed at the concept a time or too and the carers laughed along side me, because we ALL knew it was ridiculous. How can you rehabilitate – oh my gawd I sound like a repeat offender being let out on parole or something- someone with M.E or Conversion Disorder in 6 weeks, or in actual fact- EVER?

If the medical profession hasn't found a cure/proper diagnosis system/ or actually anything to do with ME OR Conversion Disorder, then what were my council thinking when they sent a Rehab team around? I mean come on, seriously??

The first day they came in I was greeted - woken out of a dead sleep by a stranger would be more apt - by a woman I shall call.... Daisy. And she proceeded to tell me exactly what THEY were going to do TO ME. The expectations they had FOR ME. And the goals that I was to MEET by the end of their assessment and rehabilitation period (6weeks). I tried to explain to this woman, as politely as I could to a total and utter stranger that I had been woken up to find standing over me in my home, that I would try my hardest to meet those goals but that I would inevitably have good days and bad days.... to which her reply was... DRUM ROLL PLEASE... 'So you're not even going to try then?'... She was one of those special people i think who doesn't understand, want to understand or even care about what ME actually is and does to people.

Well we did not have a great carer/client relationship from there on out really, she wouldnt take the time to understand my conditions, saying it was a WASTE of HER time, and that she would treat me as if I was a normal patient, a fully functioning, non fatigued, non everything patient....

This was my reaction:

Bless her, she tried. But as you may have gathered from my threads, if someone does something that I believe is wrong I am right on the phone, email, smoke signal and telling someone higher up about it.

I dont believe in letting people who are doing something wrong get away with it. The last straw was her leaving me in my wheelchair for 4 hours, unable to go anywhere, do anything, or transfer myself back into my bed. It nearly killed me for many reasons, the main two being; a) if I had fallen asleep (as those with ME are prone to do <insert sarcasm here>) then I would have fallen out of my chair and probably not woken up – probably leading to a hospital visit for suspected head injuries, and b) because I had to keep myself awake, on a BAD DAY, when all I wanted was to relax and nap and do whatever I can to get myself through to the next morning.... but nope, she knew better. Then I knew better when my social worker just happened to get a phone call, who then just happened to make a phone to what just Might have been her boss, asking for her to be taken off my rotation.... Bye bye Daisy.

So yes, on Monday I start with another Care agency, for 12 weeks so that I can start advertising for a Personal Assistant who will be both my carer and my companion/taxi to places I want to go to that I can't get to now.... The park to give my Pippin a run, to the garden to feel some fresh air and sunlight, or heck if i'm having a flipping EXCELLENT day maybe to the cinema.... Cause thats the way I roll people!

So, I am looking forward to meeting these new people who are going to be looking after me, my life basically in their hands, and I hope we get on alright. After all these people are helping me live my life, yes at the moment all my energy is going on dissertation writing but thats still living!! But the boss of the new care agency might have got a phone call already from someone sounding like myself, asking them to come fully informed of both my conditions and that if they did we would get on like a house on fire.... Awesome Sauce alround me thinks!!

Monday is a big Day!! But also a sad day because the lovely carers that I have had from the Rehab team are leaving and along with them goes Gerda (Freida), 'Toilet Sheila' ( I ay or may not have fallen asleep and scared the crap out of her), Emily Dickenson (because I could never remember her real surname), my old nanny/carer Audrey- who still knows how I like my hair brushed and head rubbed to calm me down-, Barbara (margaret), Esmerelda (imelda), Angela and Caroline( whose name I could only remember because I just watched season 2 of The Vampire Diaries :S). They have worked tirelessly and with complete and utter compassion that I just want to grab them all and give them a HUGE hug... because they were fantastic!! And I am sad to see them go, Because your carers become such a huge part of your lives and its only when things change or they are gone that you realise just how hard life is without them, I defintely don't think I could stay as up beat as I am, most of the time, without them:(

So yeh i'm talking about employed carers, but I havent even scratched the surface on familial carers!! But I think thats another Blog post!

Oh by the way peeps of Blog reading land... we Totally got to over 700 reads total last night!! Well Done and keep up the good work!!

'Elle-Mail' the more cool version of chain letters... and HAPPY 600 READS!!

One of my best friends, Aimee, and I were chatting tonight, we were talking about how to fix the comments problem with my blog – it seems that those who want to leave a message havent been able to until now. I had to mess about with the settings and such, I have VERY clearly not inhereted my fathers computing abilities as my younger brother has, and I finally managed to get the setting to save so that people can leave a message as 'Anon'.... fair enough, I thought. Would have liked a name option but if thats the only option the flipping site is going to allow me then hey, i'll take what i'm given. Or bend the rules.

Anyone can feel free to leave a comment, the good, the bad and the freaking ugly, I dont care, which way, I still value your opinion in whatever state its in, just leave your first name at the end of your comment as a courtesy :)

So anyway, we were talking about how she, as a geneticist finds it brilliant to be able to read a blog about a disease and 'invisible illnesses' and see it from a personal view point and not just a 'clinical' one. She was even one of the first to leave me a message via the new anon status.... she left her name...., so we got to thinking about how her other genetics graduates might like to have a read and said to her that she should pass the blog address on, to feel free to as the whole idea of this blog was to get as many people interested and sat up and listening as possible.

We then took a silly turn, I said to Aimee she should start a chain letter with my blog address, and she in return started calling it 'Elle mail'... This I felt would be a creepy/cool idea to get the word out about my blog.

The next happenstance, has literally as I am typing just happened, I am part of a forum as many of you have read called foggyfriends.org, and on their 'Kentagern' has literally just left me a message on a thread saying thus:

'Cool Twitcher, thanks :) I was hoping to comment directly on the blog, since I don't have things that are super-important to add, but comments tend to help your blog ratings and searchy thingies and other computery magic'

Did I mention that most people I know are slightly crazy in a funny way?

So here is my proposition and you can take it or leave it. This blog and Cause are so close to my heart its practically written on it, I want people to be out there talking about this blog, about M.E, about Chronic Fatigue Syndrome, about Conversion Disorder, about disabilities, about those that are forgotten when being classed by the government as 'disabled'. I want, hope and PRAY, that people can read these blogs and talk to their friends about it, their neighbours, their cousins in australia/france/the guy down the pub. I know its a tricky sort of subject, how the HECK do you bring up disability in a conversation? That's why I thought maybe this was a better option...

But only if you care to (and I really hope you do), we can either get as many comments as possible, and cause some 'searchy thingies and other computery magic' to happen or you could possibly pass the blog address along in an email, heck leave you're email in a comment or send it to me via my facebook and i'll start the thing off, but we need the message to get far and wide. We really do because people are dying from this thing I have. I don't much care about it for myself -well not that much-, but for those that I have seen slowly fade away into nothing because they are so desperately ill with this disease and disability, to those that I have had to talk down off the edge multiple times because they feel they cant keep going on living as we do, for those like myself who wake up every morning and thank whoever and whatever is out there that I have woken up, that I am alive to fight another day, and that maybe this day is going to be a good day?

So how about it? 'Elle-mail' chain? Or simply pass the blog address along by word of mouth, over the garden fence, in the local library or whilst you're having a catch up with your mates.

As I can now legitimately say leave your comments below, preferably with a first name so I can tell the difference between you, and THANK YOU for reading!! Maybe even just comment to say whether you think its a good idea or not? Whatever you fancy just remember; the good, the bad and the ugly... I give you free pass to ask questions, ask for more info, heck even call me a liar, but know that when you are leaving a message, you are helping my 'computery magic' happen so others can see it even if it doesnt suit your particular tastes.

And a few acknowledgements and shout outs:

To Aimee – I hope my blog helps you personalise your PhD... you can make this world a better place if you should choose.

To Silje- Who understands far more than many realise and cares even more – thanks for my first Anon comment :)Takk, det betyr mye min norske venn.

To Steve G – You have known me my entire life, thank you for being the first to personally say to my face that you think my blog is a good idea.

To Kentagern – Legend as always, cheers for the chance to use you as my 'quote of the day'.

To Debbie and Susie – My Admins in Crime, we're all here, we all have the same, and when one of us is down the other two can prop our support group up!! Never fear my dears!!

To Neil, as always the music master, cheers for the daily pick - Jimmy Cliff will always be my favourite!

To the people of my hometown – I am so Proud to live with you and alongside you, the support that has already been raised has been immense and I couldn't say thank you enough.

So... HAPPY 600 READS EVERYONE!!!

Scars, Pride and Living...

The Scars of Illness...

I sometimes look at my hands and count the dots that run along my veins. You can always tell someone who has had numerous and prolonged hospital visits by their hands and arms. Sometimes I look at them with pride, I survived that one, and that one, and that time, and that time. But sometimes I wonder whether others look at them – to be fair they would have to look hard- and wonder whether I have experienced drug addiction?

I havent. But the amounts of times that I have needed to be put on Intravenous(IV) Lines for fluids, let alone the medications have been numerous over the years. From the last visit to hospital nearly 3 months ago I have gained another 4 on my right arm and hand, in the end because of the numerous times i've had to be put on IV fluids my veins have become poor in quality, making it harder on the nurses let alone the doctor to get the needle in.

Helpful hint: Nurses are by far better at putting in IV needles in than doctors. Trust me on this!!

I also have scars on my legs and stomach, daily injections to alleviate the chances of a Deep Vein Thrombosis and an unfortunate run in with a Sub-Cartilage fluid system in my stomach left me looking 6 months pregnant just days after my miscarriage. Stretch marks were a given i'm afraid.

But these days I look at the scars, the physical and the mental and i'm proud of myself. Completely and utterly PROUD that I got through some of the toughest times in my life. The beginning when I was told and thought I was going to die, the middle where every seizure lands me in hospital on numerous drips and the now, where I have a sore throat and scratched oesophagus from where a Nasal- Gastro Tube had to be forced down through my throat because I had lost my swallowing reflex, and they were desperate to get something in my stomach.

I'm proud of the fact that I have gone through all these things and STILL been able to come out the other end of things, with a mostly fighter and upbeat attitude about things. I sometimes have people talk to me, or write to me and just look on in wonder, at how i'm not a complete and utter bawling mess on the floor.

I dont have the answer. I guess i'm just too stubborn now to let anything phase me for long. Somethings have stayed with me, but they are bound to. But I dont have the energy now to worry about the small things, the insignificant and the days gone by.

I have Conversion Disorder, or rather as they now like to call it, Functional Neurological Disorder and I have ME/CFS, Myalgic Encephalopathy, or to the uninitiated, Chronic Fatigue Syndrome. I dont have the time or energy to let things get to me for long, I have other things that need worrying about. The Important Stuff. Making sure I take my medications, make sure I regain my balance between rest and activity and making sure my family and friends are happy and content, with me and themselves and finally working my ass off each Tuesday or Thursday doing Physio which I come out feeling great for my achievements, but broken because its taken so much energy.

Those are my priorities, everything else can go by the way side i'm afraid. I dont have the time or the inclination to be bothered by what other people want to say to me, or their expectations of me -the ball curled up in the corner sobbing over my misfortune. Yes I have down days, everyone does, but I have things to do and need to snap myself out of it sharpish before I let myself start to drown in it.

So the moral of today, is look at your scars and be proud- you survived what has happened and are around to tell the tale. Be proud that you were strong enough to get this far where so many have fallen and are unable to pull themselves back up again. Be proud that you are alive, and living life, whatever kind of life that it is. Because so many die young from far less than we. And more are dying daily from this horrid and untreatable disease we have: M.E.

So be proud and keep living, even in the dark days. Keep going.

The vulnerable, dating and how we cope

 Something happened today that I have been reassured has happened millions of times before and will happen millions of times again. I had my feelings hurt by someone I cared about who it turns out wasn't who he said he was. I have nicknamed him 'The Worm'.

I met him on line.... STUPID I now know, but with me being almost bed bound and it being an ME forum, there to support each other and get each other through the good times and the bad. You share things on the internet that you never think someone who is supposedly in the same position wouldn't ever use against you and when they show themselves for who they are really – or in my case, they get caught out in their own web of lies- then you feel betrayed, and for someone in a vulnerable position, such as having a disability or invisible illness, it hurts more I am positive than it would normally.

The moral of the story is, yes we are vulnerable people, but we are strong, we are fighters and together we can take on the world. But one or two are always get separated from the herd and get caught in someones web of lies. But the moral is, the rest of the herd are there to get you out of the web and back in amongst the group so deep that you feel safer than you have ever before.

Its early days, i'm sure it will be ups and downs whilst new people learn of what has happened and try and open the closing wounds with the same questions. But I know I am part of a group that is bigger than just one person, we are a group of people so large that there will always be someone to help pick you up, or 4 or 7 or even in the end 11.

So thank you to that person who tried to break me down today, thank you for trying, but bad luck, I am stronger than you think I am and I will move on from this and I know I have a fantastic group of friends there around me when I need them most as any body with a support system, on a support forum etc will have. So I encourage you to join one, because you will quickly find that you have a bigger family than you realised.

Just as always with the internet, Be careful. Learn from others mistakes, heck learn from mine...

My thanks go to my FoggyFriends.org crew, to name you all would take up more than my dissertation word count, but my utter and true thanks to you all anyway, and Neil the Music Man... awesome as always. And to 'The Worm'.... nice bloody try Irish.

This poster works for my situation, but also for everyone else as well, we can break down temporarily, BUT we always pick ourselves back up and become stronger and learn from it!! 

'Why ME', Guest post by Neil Smith

  As many of you know i'm doing my Final Dissertation at the moment, so i asked Neil to give me his story to share with you all. Just so that people understand that not every story is the same. So over to Neil.

'Why ME'

Elle has asked me if I would like to contribute an article to her blog.

I'm Neil , I was diagnosed with ME in Oct 1995 , for 1^st 4 years suffered badly , but from 1999

saw slow improvement , to be able to return to work part time in December 2001 , working 3 days

but never 2 consecutive days , with several minor relapses I continued to work until January 2009

when I hit the wall , I pushed myself over the limit , being over confident , another tale.

After the 2^nd relapse , after a period of time , I got low , bored , isolated and financial concerns ,

I saw my doctor , for a chat and asked him 'WHY ME ' and he replied because you can cope with

it Neil , reminding my positivity in the 1^st place got me to where I was in December 2001.

Prior to my illness I was quiet an active person , in 1994 retired from refereeing 80 games/season

was runnung a junior football side and cycling 12 miles a night 3 times a week , I also had a

responsible job in the Food Industry and married for 2^nd time.

Then in May 1995 had serious bout of Food Poisoning , and I just went down hill after that , best

way to describe how I felt was like a car battery that doesn't charge up properly , expend energy

and took ages to get going again and the pain in my calf muscles was worse than toothache.

Fortunatley through work had free health medical cover , so after extensive tests , I phoned specialist in October and said what is wrong , never forget he said you've got M.E. Over the phone.

Well we all know what it is now , I joined Shropshire M.E. Group , was North Shropshire contact.

You name it , I read about it , etc another tale to tell.

Like so many people I carried on as if it would disappear , pushing myself , oh dear that was the

wrong thing to do , I ended up a total physical wreck , walking 10 metres left me total exhausted,

the pains and aches intensified , got the M.E. Jerk , and not headaches but at back of head on

right hand side , it felt sore of you know what I mean.

SO TO ALL NEW SUFFERS - STOP – YOU CAN'T DO WHAT YOU DID BEFORE

I wasn't going to let this illness get on top of me , my doctor was always impressed by my positivity , I had read so many articles about people who had given up and spent all day in bed ,

read about a hockey player who had ME and thought they were better played a match and ended

up being worse, so knew possible pitfalls.

My wife at the time worked as a care for a young man with MS and that made me realise I may

have M.E. but it I could be so much worse off.

So thats when I started using the expressions ' Thats Life and ' There's a lot worse of than ME '

So after 3 years , after discussion with doctor , who was a great support , we decided it best if I

stopped and basically rested for nearly a year and then rebuild myself up , doing a little bit more

once a week , montoring situation all the time. Took 2 years but it was worth it.

It's so important during this time you keep yourself sane and positive , I set quizes for local pub .

Analysed the Top 40 singles ,i'm music nut .

SO BE POSITVE ,KEEP YOU MIND ACTIVE AND THERE IS LIGHT AT END OF TUNNEL

( to be continued )

  

 And Ladies and Gents, that is Neil... He was awesome the other day, i was having a down day after my Courage post went live, so he sent me this link and i listen to it every day now...

No copy right infringement mean't just an illustration how how awesome Neil is.. LOL

Hard to fail, but maybe it's worth it??

I had this amazing conversation with a man named Neil, and we got talking about the limitations we have as M.E sufferers. We were both of the vane that you should rest and sleep as much as possible, you shouldn't do more than 10% on a good day than you would on a bad day, but then I saw this...

'It is hard to fail, but it is worse never to have tried to suceed'...

Those are some mighty powerful words... and it got me thinking. Yes as M.E sufferers we need to rest and sleep (when possible that is), someway to deal with the pain and we need to find a balance, but as a relatively -compared to Neil that is- new sufferer, I have yet to fully accept this boundary 'issue'.... or maybe its just my age?

Neil mentioned that the second time he relapsed he felt better because he knew his limitations, and I wonder if we have to get to that point, we have to do a little extra each day to find our 'balance' and then relapse to find it?

It is hard to fail and relapsing is seen as failure by so many of us, if not all. It in some way says to us and those around us that we've done something wrong, we've been careless or not taken this seriously enough. But what about being too scared to find your balance and never knowing that if you had pushed yourself that little bit, taken your fail- but found your balance- maybe you would have found things a little easier and done more?

But then again, i'm not a seasoned pro yet like Neil... But we all need to do something similar or else we're just taking our diagnosis and accepting it.... if by accepting my diagnosis it means that I have to stay in this blinking bed for longer than I absolutely have to then sod that right off!! I will push myself a little each day (AFTER GRADUATION THAT IS) and see what I can do... I might even keep a tally. But thats what I intend to do, because if I do anything less then I am accepting my fate and just giving up, I would much rather fail, but know my limits than sit back and let the world pass me by when I could have had even a small part of it....

I'd hate to think back and realise that I could have done more with my life than I did and live the rest of my life in regret. I want to be at peace with all my decisions and so far so good, so again, if that means I have to fail to know my boundaries then I think..... hopes her mother isn't reading.... thats what i'm going to do, push myself until I hit that wall with a concussion, then lay down for a month and build myself up to that level and try and maintain it, yes i'll have mini failures and falls along the way, I know its not going to be an easy life and things dont necessarily go straight forward, but who would want to live with a regret like that on their mind?

Definitely not me, as I have said and prove everyday I get up and wake up, I am a FIGHTER!

Right onto the thanks for the day... Thank You to my home towns Facebook Page the 'Drayton Crier', they publicised my blog and I have got a MEGA reaction! Debbie, a lovely lady who read my posts who also has M.E. took up the gumption to make a hometown M.E/CFS and Fibro group and we were ASTOUNDED by the amount of people who had ME/CFS in our small town, it spread through fb and word of mouth and now we have a decent amount of sufferers ('US'), Partners, Carers and just people wanting to learn more who had read my blog, so WELL DONE MY HOME TOWN!! You have shown your propensity to grow and accept people!! I congratulate you!!

Exhaustion: The difference between you and M.E

That awkward moment when you try to explain how exhausted you are and someone has the gall to turn around and say 'yeah I feel a bit knackered now too'... Nothing is more better at setting me off, whether it be an internal mental rant or an outward rant at the person, for even thinking they know what feeling 'knackered' actually is.

Today I am having a pretty crap morning, my carer came in, one of the new ones -she's nice, but knows my mum- and I have to drag myself out of my haven that is the comfy pillow filled nirvana that is my bed. Today is getting off to a great start <insert sarcasm here>, because the first thing I want to do is go straight back to sleep. I am pushed in my wheelchair to the wet room, I do my morning ablutions and I’m pushed back and I’m allowed to get back into bed today...yesterday I wasn't although I’m not letting that happen again. I am Shattered, I am mental Scattered all over the place, and yet I log onto facebook to check my messages and even after all the posts I have blogged I can tell that this one person hasn't read them. Do you want to know how I can tell? Because he makes a joke about my mental capacity and being stressed out first thing in the morning when my symptoms are usually at their damn worst. I sent back the obligatory sarcastic response and to be honest, I’m quite proud that I thought of it considering how foggy I am today, I’m mentally giving myself a pat on the back for that one.

But like I said in the beginning, people feeling tired after a long day at work, or tired and feel better after a 5 minute sit down and a cup of tea, someone who is supposedly so tired they are 'ready to drop' and yet can still go out for the night or stand and do a full cooked dinner, someone who is exhausted from walking to the corner shop and having to wait to be served.... THAT is NOT exhausted.

The only people I have any sort of exhausted/tired relation scale to is those that have run a marathon and then asked to do a full day of living, job, looking after the kids, cooking, washing yourself, everything that a person does in a 'normal day'. THOSE are the only people that get any smidge of an idea of where we are coming from.

This is what makes me wonder whether people actually realised that even though I am up and functioning, I am digging deep into reserves that are becoming shockingly low to do so. I had an awful nights sleep which is par for the course, I don’t feel any better for that nights sleeps, actually I’m starting to wonder if actually trying to sleep and failing miserably at it is becoming a waste of time and I should just plod on... logically and realistically I know I can't do this. I MUST RESIST THE BOOM AND BUST!!!! But people with M.E. don't get to wake up in the morning feeling refreshed, we feel like we've been dragged through a number of hedges backwards and gone through a round with Mike Tyson... (although I am sure that he would go easy on me should we even meet in person, the press he would get for hitting the wheelchair girl would be immense. Although... maybe that would get 'US' some publicity, ….maybe I’ll think about it, I’ll take one for the team :P .)

But 'Boom and Bust' to the thankfully uninitiated is where we have a 'good day' (BOOM) and think OMG I’m on top of the world, we get done everything or some of things that have been needed to be done and then the next day we are 'Bust'... back in bed barely unable to move and back where we started.... and we stay there, it could be a day back in bed, a week or months... all because of that one 'Boom' good day. We are stuck in bed because we are Exhausted. There is NOTHING left, no energy, no reserves, and DEFINITELY no spoons.

Now that the mention of 'Spoons' has come up.... I’m thinking a few of you that are reading for sheer curiosity are thinking 'what the fudgicle is she on about flipping SPOONS for?' Well let me guide you through the spoon theory my friends.

The 'Spoon Theory' started one day when a woman called Christine Miserandino, don't worry Christine I’m not going to print it in full, your copy-right is intact- sheesh, was sitting in a diner (she's American) with her friend and her friend asked what its like to have LUPUS (another invisible illness) and to explain how she felt throughout the day she gathered as many spoons as she could and gave them to her friend and told her that she would take away a spoon for every action or thing that needs to be done during the day. You can't borrow spoons without consequences, but you can if you want to feel completely even more DREADFUL than you usually do anyway. 

 So for our purposes we will say we have 9-10 spoons. 1 spoon is for getting up, 1 spoon getting to the bathroom, 1 spoon for a shower and another if you choose to shave (man or female for ease's sake). So that is 4 already. I'll give you brushing teeth for free, but then you need to get to the kitchen, a spoon, cook something, a spoon and get back to wherever you started, a spoon.... that is a grand total of 7 spoons right there. So you rest, but resting doesn't give you any more spoons really, it just conserves them for longer, for later, as long as you don't do anything... A.n.y.t.h.i.n.g.... so I have 2-3 spoons left.... That would be eating, getting into my pyjamas and then getting into bed.... This isn't really including little things, talking, thinking, emotions, picking a cup up, opening a bottle, things like that.

So Yeh. That’s the spoon theory. It usually gets a reaction. Because whereas we (people with M.E./LUPUS/Everyone else with an invisible disease or illness) we have to plan things out, we have to look over in advance whatever we do, for wherever we go. We have to ask the questions; do we use a spoon on shaving or do we use a spoon on doing our hair? Do we choose use a spoon on making food or having a friend around for a chat?

And the reality is, when ours spoons are up, so are we, once our energy is gone, so are we. That is exhausted, that is tired. Others can take that term lightly, but to us, that term isn't when we say we are exhausted, it means we are nearly on our hands and knees, and need help to do the basic of things. I'm on of the unlucky/lucky ones. I'm unlucky that I’m ill, but I’m lucky, in a strange sick kind of a way, that I’m ill enough to be able to have carers in three times a day at the moment to help me conserve the energy I would lose, on getting my university work done.

So go back to me and you and the difference between 'exhausted'. The picture at the top says everything. 'If I choose you over sleep, you better feel F**king special', that is true, because we could be using our energy on the basics, instead we are spending them on you, because we feel that you're worth it!

But don't take it for granted please. Because even though you are special and awesome sauce, and brilliant and funny and I enjoy your company, some days I just don't have the energy to give you and its not an insult, and please don't think it in any way like that, its just me being selfish for once in a VERY long time and putting myself before everyone else.

Thanks again to everyone who has read my posts, thanks to my friend Joan in Orlando who has spread it around the United States for me, and Thank You to Mike at Drayton Crier for letting me publicise this blog on his page. But most of all thank you to those who have read it, taken something from it and passed it on. I know its a difficult subject, but that’s why I’m writing it, for everyone out there to read and go through the good times and the bad with me, so that others don't have to.