Cold/Virus + M.E = ERGH!!!

I think the title really says it all. I have a cold and/or a viral infection of some kind. Which has made my M.E flare up as it always does when I get anything on top of it. Problem being I don't really think my M.E ever recovered from October, which I suppose makes sense because I have had one infection on top of another ever since. To the point where I now have to have anti-biotics on repeat prescription so that I don't have to keep going to the doctors to get more whenever I have another. Think they're a bit sick of seeing me for pointless two minute appointments now!

My legs decided that they wanted to turn into to led last night, which was a nice surprise first thing this morning. But I still made it to the Christening that I was supposed to be going to today, which was a very good thing as there were five children I knew getting Christened! I did forget to give them the cards I bought for them though! It was really nice to see lots of people that I haven't been able to see in a while as well, even if I was feeling even less brilliant than usual!

We went to mum and dads for lunch and they made me a bed on their sofa as apparently I looked awful. Always nice when people tell you that! They made us a roast, and gave Niamh gravy, possibly a big mistake as I am sure they hadn't been planning on needing to re-decorate their dining room "bisto gravy brown". They have this posh high chair, that can be used by practically any age group (even up to adult) and lucky for them it has a rather big foot rest in the setting it's on at the moment (I think that this would be the seat if it were converted for an adult) and this foot rest becomes more of a food rest when Niamh is using it. Well, more like a food catcher. Bless her. Saves on work clearing up though.

Haven't done much else all day. Find caring for Niamh solo very difficult when I have added illnesses/infections on top of my norm. Taking her out anywhere is actually impossible on my own when I'm like this. I am very lucky though have a great support network of family and friends. Tomorrow, for example, my sister is coming over to cook me and Niamh some lunch and take Niamh to gym babes. I can go with her if I'm up to it or stay home and get some more rest if I'm not. Which is nice. Although as I said before they're moving Niamh up to tumble tots in a couple of weeks so would like to make the most of it whilst she still with the little ones.

Here are mine and Niamh's 366 pictures for today.

Me looking "awful" on mum and dad's sofa:

And Niamh, in her toy box at mum and dads:

I'm going to go and get some rest. Night all!

The cold weather sucks.

I have been having really bad problems with my joints and bones recently. Because of this I can't go out in the cold if it is at all avoidable as makes everything hurt so much more. So have been stuck in the flat today, which I don't like. I know it sounds silly. But I spent a couple of years house bound and 18 months bed bound and going back there obviously worries me. No matter the state of my health I try to get outside, even if it is only briefly everyday. I just don't want to not feel the breeze and the temperature and see the sun. I get a serious case of cabin fever if I don't have this tiny little outing! How stupid. Problem is, if the news is to be believed, this is the start of a cold snap that could last up to four weeks. I really don't want to be stuck inside for the best part of four weeks! Think that would make me go crazy, even if I knew there would be an end to it! It really is so stupid, especially seeing written down, But it really does make me worry.

I tried to get some cleaning done, but my energy levels are a bit poo and considering I can't really lift things or bend well at the moment it made it a bit complicated. That and, as you all know, I like to save my energy to spend as much time with Niamh, playing with her, or just sitting with her and watching TV. She makes me smile so much. She really is so wonderful. Am really proud of her today actually. We are trying to cut out her night feed as she doesn't really need it anymore. She hasn't been taking much during the day and has been trying to have more feeds at night. Obviously this isn't good. Chris does the night stuff but he has to work so can't be too shattered. We live in a small two bedroom flat but there is no way anyone is asleep if she is awake because you can hear everything going on in the others rooms. So my nights are often disturbed. Not good for an M.E sufferer. So yesterday I did a bit reading up on the best way to do cut her night feed out completely. The best way, it seems is to replace it with water, because after a few nights they don't see the point of waking up for it, and either don't or wake up and go back to sleep quickly without needing any help. Last night, she took the water and went straight back to sleep (with only a few issues because of her teeth but none because of the water). So far today she has drunk both of her bottles, the majority of her first bottle and every single drop of her lunchtime bottle! Hopefully if she fills up on them during the day then she won't want any over night. At the moment she is still having a dream feed just before we go to bed, but we will aim to cut that out in a week or so when hopefully she has decided she no longer needs the night feed. If we can get her to not want the night feed then hopefully we will all be better rested and happier. I might see some reduction in pain and increase in my cognitive ability, that would be nice!

I know that sleepless nights are difficult if you don't have M.E, but I'm sure it's harder if you do as you rely so much on rest. I have to have a rest every time Niamh has a nap. I think some of my friends think its annoying if I do manage to go out but then have to leave early because of Niamh's nap. I sometimes feel that they think that I'm an overly strict mum, but I'm not. It is more because I need the rest. Niamh needs to be in a routine because I need her to be! It is good for her also, don't get me wrong, but if I didn't rest I don't know where I would be. Honestly think I would spiral into a major relapse. I am so glad that Niamh was so easy to get into a routine and that, for the moment at least she appears to be perfectly happy in one. Soon she will want to drop her morning nap. But thats ok. Hopefully she will make it shorter and shorter so that I have time to adjust too.

Niamh was born myself and Chris made the decision that I would take all of my daily medication (excluding pain killers obviously) in the evening, so that any and all side effects would be gone by the morning when I am solely responsible for Niamh. These have to be taken approximately two hours before bedtime so that the sedatives parts have started working by the time I want to go to bed. This, would be when I was out. So I have to take somewhere in the region of 12-20 tablets dependant upon whether or not I have any infections etc, and this means taking them out with me. Then taking them in public (people stare, my friends I'm fine with but other people really do stare!). THEN dealing with the fact that the side effects I experience are hap-hazard, as is the time it takes to start experiencing them. Sometimes the sedatives can begin to take affect within 30 minutes, others it takes the full two hours, occasionally more. They make me go dizzy, wobbly and I often sound drunk. I will giggle and chat non stop, then my legs won't work and eventually I just pass out. Not good if out in public, especially at a pub. What do people think when you sound drunk, wobbly everywhere, fall over and pass out? Not only is it likely to get me thrown out but it's also majorly embarrassing!

On a lighter note, here are mine and Niamh's 366 pictures from today:

And Niamh's, all snuggled after her bath!

I'm going to get an early one as I think I have a cold coming on. Boo! Night all!

Calming down and pink wafers.

Well yesterday got me in a right state. I was soooo angry, as I think many people were. I still am, to an extent. I have made my point known, and so have many others across the Internet. I did do quick search on the jackass in question and found that according to a couple of sites I found, this Mr Liddle is supposed to be a Christian, because those comments and others in his past are possibly some of the most un-Christian things I have ever read! However, I did, in my search of the Internet find this little baby, written by a political blogger who also happens to suffer from M.E and fibro. It. Is. Brilliant. http://www.huffingtonpost.co.uk/jason-reed/rod-liddle-and-me_b_1235199.html. He raises a point as he concludes his blog, that those individuals with M.E tend to be driven people who work hard. Often professionals and those in the top of their fields, that are wrongly described as lazy for having a disease. He then points out that by not having these diseases himself, Mr Liddle, is, in fact, not trying hard enough! I actually sat at my computer and clapped (Chris thought I was crazy).

Since yesterday I have read other articles, in a way supporting what Rod Liddle worte but in a less abusive way. The common ground in all of them being that people fraudulently claiming disability benefits are contributing to the current economic crisis. Which is true. But people fraudulently claim nearly every type of benefit imaginable, so all should be targeted as far as I'm concerned. Most, not all, but most, of these articles have been well thought out. They have facts, they have been researched. They haven't abused an entire community just to make a badly thought out point. They have specified FROM THE START that they are in fact talking about a small percentage of the disabled population. Many complain that those against Rod Liddle's article failed to read it the whole way through and got offended by the start. Of course most disabled people would. If you start reading something and find it SO offensive that is actually makes your blood boil, you are hardly going to continue reading it! He was, apparently, aiming at only those who are pretending to be disabled to claim benefits. My issue is that, in his opinion, by suffering (keyword there suffering) from M.E/Fibro I am clearly just pretending to be disabled, and that is where my problem is. That, and his blatant disregard for the pain and illness endured by so many. Painting disability as a rosy, fun experience. Idiot.

Niamh has been better today, less teethy and more calm and fun. She still wants lots of cuddles though, which, of course, I am more than happy to provide her with. She also doesn't like fast food, how cool is that. Every week dad and I have fish and chips on a Saturday lunchtime, and every week I make her her own fish fingers and some steamed veg and give her a few of my chips to go with it. Every week she leaves the chips. I was very bad yesterday. I said that when Niamh was over 1 she could have VERY occasional bits of fast food. So yesterday she had some chips and chicken from KFC as well as a corn on the cob and steamed veg I had made for her. She ate all the veg and the corn on the cob and one or two chips. Left the chicken entirely, then had a whole apple for pudding! YAY! The baby led weaning paid off and Niamh prefers healthy food. So happy.

Here are mine and Niamh's 366 pics from today:

Me smiling, it's scary I know:

And Niamh, when she fell asleep eating her jam on toast breakfast!

Night all.

FURIOUS! What we're all talking about. Mr. Liddle.

To say this makes me mad, is possibly the understatement of the century. A few of my friends may think I'm over reacting, but all those who have a disability, (whether it's M.E or fibro or not) or who live with someone with one will be just as outraged as me. Rod Liddle from The Sun newspaper, thought it was perfectly fine (in his deranged opinion) to write an article stating that it was his "new years resolution 2012 to become disabled", What. A. Jerk. Because it's one hell of a lot of fun, a complete barrel of laughs (note the sarcasm).  The article has since been removed from The Sun website, but the damage is done. Not to mention (at last look) an apology has yet to be issued, and you can't un-sell the hundreds of thousands of newspapers that have already been sold. As the article has been removed I can't post the link to the article itself but I found this, which is most of it: http://www.freezepage.com/1327578079WVBGACETGC

Some other choice quotes from the piece in question include:

“My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”

“And being disabled is incredibly fashionable. The number of people who claim to be disabled has doubled in the past ten years.”

“It has become easier to claim those benefits, partly as a consequence of the disablement charities who, out of their own self-interest, insist that an ever-greater proportion of the population is disabled.”

"And who can blame them? Not only do you get money from the Government and don't have to go to work — but if you play your cards right you might get one of those badges which lets you park wherever you want."

       "Right in front of the cashpoint, for example. And you can use those enormous toilets with levers and handgrips and emergency buzzers they have in all public places, without feeling too guilty about it."

Well Mr Liddle, you pea brained idiot. I have a few responses for you.

Firstly, I suffer from (and have suffered for going on 11 years now) of both of your "newly invented diseases". Which, it turns out aren't that newly invented. Now I'm not going to mention fibro too much as I'll hold my hands up and confess that I don't know as much about it as maybe I should. But M.E, I have read EVERYTHING I could read, when I could read a lot. This disease which has many names including Myalgic Encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), chronic fatigue syndrome (CFS), chronic fatigue immune dysfunction syndrome, and, I'm sure, many other terms. Affects roughly 250,000 people in the UK alone. There have been over 60 recorded outbreaks of the disease across the world, the first in the UK at the Royal Free Hospital in London in 1955, SO hardly a new disease! It is recognised as a neurological illness by the World Health Organisation (WHO) and there are NICE guidelines in place to advise on how to treat the disease, although there is still a lot to be learnt.

And, as for it making you feel 'peaky' for decades. For a start, who wants to feel PEAKY FOR DECADES???? Secondly, it is so much more than that! Common symptoms include (mainly taken from www.ayme.org.uk) :

• Fatigue: Utter exhaustion, often to the point of collapse. Different from even the worst tiredness experienced by normal, healthy people!
• Pain: can occur anywhere in the body, but most often experienced as headaches and severe muscle and joint pain. Skin sensations, like crawling, pins and needles and extreme sensitivity.
• Cognitive impairment: poor short and medium term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan.
• Other symptoms: body temperature disturbance, dizziness, vertigo, postural hypotension, sensitivity to light and noise. Possibility of sleep disturbance, nausea, loss of appetite, gastroinstentinal disturbance, mood swings, panic and anxiety, acquired sensitivity to food, medication, alcohol and chemicals.

There's probably hundreds more that I haven't mentioned. I would be here all day. So Mr Liddle, still fancy it?

As for being disabled being incredibly fashionable. Well, being someone who is massively against fashion, trends of any kind, in fact doing my best to go against the grain of society. Tell me sir, why then, would I choose to be disabled. No one sane, normal individual would CHOOSE this. The amount of people claiming disability benefits has, according to you, doubled in the past 10 years. Have you ever thought that maybe this is because many spent the last decade using their savings or relying on family (as I have) and that these means are no longer there and therefore the only choice left to these people is to claim benefits. Many who do claim them, don't want to. For many, it has been a last straw decision.

"Who can blame can blame us? Don't have to work and get money from the government?" The fact you are missing sir, is that many of us WANT to work. Many of us would do practically anything to BE ABLE to work. So Mr Liddle, instead of calling us lazy, stating that we don't want to work, that we can't be bothered, why don't you get on the governments back. I think you'd find sir, that if they were to begin to shape the job around the individual and not the individual around the job, then Mr Liddle, a large percentage of the disabled population would be able to work. Surely this is a much better use of your time than insulting an entire community of vunerable individuals, with you badly researched, clearly un-thought out rantings?

O and it is DEFIANTLY not easy to claim benefits. As anyone can read in my previous post entitled "slipping through the cracks" I am living proof that it is not easy to claim benefits. If you have a disease like my that varies and is invisible it becomes even harder. I cannot claim job seekers or income support as I cannot work. I cannot claim ESA either as my husband works in excess of 24 hours a week, despite his low salary. We fall through the cracks and often have to rely on my parents to make ends meet. So yes Mr Liddle, it's a piece of flipping cake!

O and the blue badge! That is so difficult to get. I only received one in 2010, despite being ill since 2005 and confined to a wheelchair since 2006. So yes I can park close to the cash point, but I can't drive the car to one myself and, when I get there, often someone has to go for me, or unload a wheelchair and push me to the cash point, only to re-load the wheelchair minutes later. The toilet, the joy of using a disabled toilet. How many have you been in Mr Liddle? They are often a mess, not kept as clean as others. The hand rails and the emergency alarm. Because it's so dignified having to have help on and off the toilet, and even more brilliant having to pull that buzzer and have someone you don't know come in, find that your half-naked on the floor, having fallen off the toilet and found yourself unable to get up. Yes sir, everyone wants that!

I tell you what Mr Liddle, come and live with me for a week, of my best friend and her four children, or any number of the people I know with M.E and fibro, or those with other illnesses and disabilities. Live our lives for just one week and I promise you Mr Liddle, you will not think it is so "cool" to be disabled.

Wizard of Oz and day of recovery.

Well I didn't post yesterday because I managed to go to London to see Wizard of Oz and it was awesome!

I had my double dr's appointment in the morning and it actually went really well! My asthma is very hit and miss, so they have given me allergy triggers and now most of my support network live with an animal I'm allergic to (mum and dad: rabbit, my sister and her boyfriend: dog, my in laws: cat). So they have made me promise to remember to take my preventative twice a day, given me two set of allergy tablets and made me an appointment with a respiratory and allergy consultant. Which could be interesting. They filled the request for information that the DLA people sent me. The Dr was REALLY good and listened to EVERYTHING I had to say, and wrote it all down, suggesting other parts I had forgotten. He's also sending me for an ECG and a check on my glucose as he thinks that might be the reason for the cysts and abscesses I keep getting. But it was, all in all, a good experience!

Then I had a bit of a rest. Our friend Rog popped round for a while to fix up Chris's Xbox and he stayed for lunch. We left for London, around 2.30, and drove most of the way. If I have to travel for long (regardless of the mode of transportation) it has to be horizontal. So we went in the car so I could lay day with a pillow and a blanket and get some sleep. The show started at 7 but we didn't want to travel in rush hour so we went early and had a late lunch/early dinner at cafe rouge before stopping at the shops on the way to the theatre.

I thought the show would be good, but I REALLY REALLY enjoyed it. I had to have mum take me to the toilet and stuff half way through and put my legs over the chair in front so my joints didn't cease up, but because it was not very full, I could do that! We had drinks from the bar, and ordered some for the interval, it was really nice. We had seats about 10 rows from the front which is the closest I've ever been. My parents decided I was the scarecrow. The guy played it really well (as did they all) but he played it so he was wobbly, and falling over all the time and couldn't remember anything ever! They are probably right, and he was so funny too! I loved the dog as he was a real dog, and even though he didn't have any lines he liked to make himself know occasionally!

On the way back I was a bit wobbly, and a bit out of it. Remember calling traffic lights tablets at one point! O dear! Anyway, got home and literally fell in to bed. Niamh didn't have a very good night, so I ended up on the couch at one point so Niamh could steal my side of the bed.

Here are mine and Niamh's 366 pictures for yesterday! Me, asleep in the car on the way to London:

and Niamh, in her toy box:

Today

Not much happened today, as I said, Niamh had a really unsettled night and we soon realised why. She woke up with a temperature and a bad bum, bless her, so think it's most likely teeth. She doesn't seem ill or anything, just really annoyed and grumpy. We've been giving her medicines all day and her temp seems to go back up just as they're due, so will just keep an eye on her for the next few days.

Of course with most of the day out of my routine yesterday, and a disturbed night last night, I was a bit worse for wear today. Lucky for me though, Chris had today off so I could recover. I have spent most of it either resting or in bed. So not very eventful really. I guess that's the price you pay when you have this disease and decide to do the odd normal thing here and there. Pain and exhaustion after, but yesterday was worth it :)

Here are mine and Niamh's 366 photos for today:

Me and our friend Roger:

And Niamh and daddy:

Night all!

Tubi grip queen.

This will be a short entry as I'm seriously trying to save my energy as am going to London tomorrow to celebrate my 26th birthday. Let me fill you in, I turned 27 in November (yes, 27) BUT when I turned 26 I was heavily pregnant and bed bound so mum and dad decided that they would take me to see the wizard of oz, after Niamh had been born and when I was well enough. Well, that's tomorrow. Chris is off so he has Niamh and he has Wednesday off so I can recover. Which is really nice of him, him not coming with me and taking Niamh will mean that I have a good time because I'm not spending it all worrying about her. Missing her maybe, but not worrying about her, well not too much at least!

I also have a two double appointments at the Dr's tomorrow. So, assuming they're not running at all late, will mean that I'm in there for a minimum of 40 minutes. Joy. I'm actually really nervous about it. I'm being re-assessed for my DLA and they have sent a letter asking the GP's for more information, so they want me to go in and discuss it with them. I'm not so much nervous about the appointment, more so about the outcome. But hey, not much I can do about it really is there! Also need to ask for some kind of referral to find out why I am repeatedly getting cysts and abscesses, have had them almost continually from when Niamh was born, used to get them occasionally before I had her to. So there has to be a reason, or some kind of medication to at least help.

Spent most of today resting on the couch, so that I would be able to take Niamh to gym babes. Covered in tubi grip from head to toe, basically (hence the title). She enjoys it so much, but it can be very difficult to me. It was hit and miss for a while but we made it. The staff there are so very good and they helped me out a lot. They also want to move her up to tumble tots at the end of this term as she has been walking confidently for a while. This is brilliant for Niamh but means my baby is growing up. I am a MASSIVE fan of tumble tots as I did it as a child, as did my sister. I budgeted for one activity for Niamh, as I couldn't afford more than that. But it seems to have been the right choice. I'm teaching Niamh to sign Makaton at home (my god daughter is profoundly deaf, so in Niamh's case it is more important to have a grounding in it) and when she gets older I'm going to aim to do more crafts and baking with her when I'm well enough. You don't have to pay to do everything, just the stuff you can't do at home, and I don't have the room for tumble tots equipment in my tiny two bed flat!

Anyway, lots of rest needed for tomorrow, so I am going to run (metaphorically at least) and go behave myself rest.

Here are mine and Niamh's 366 pics for today:

And Niamh, asleep in her buggy on the way to tumble tots, I thought it was just SO cute the way her arms were up. She hasn't slept in this position since she was ickle!

Night all!

New look! :)

I had to, for the first time today, appeal for what to write about on here. As I have said previously I want to bring the blog back to the issues that I set it up for. Having M.E whilst being a parent (not to mention other interlinked conditions). It's not going to be massively serious all the time, nor is it going to be futile and boring either (I hope!). But I wanted to try and find the balance about the issues, my life with M.E and other bits that don't focus on it too much! I will get there in the end. Anyway, today I was so brain fogged that I honestly couldn't think of a subject (it might seem a tad obvious in hindsight) but a few people kindly pointed out that brain fog would actually be the perfect subject. So, I spent all day considering how I was going to write it, as it makes such an impact on my life and the lives of other sufferers, that I wanted to "do it justice" so to speak. But I have gone round and round in circles all day and I am just too fogged to make enough sense, this has been quite amusing for my family on multiple occasions today. Not to mention that I still have this annoying bone and joint pain that isn't the normal kind I get and it's making typing a little more uncomfortable that usual. Therefore don't think I can write as long an entry as I was intending. Think I will mention this new pain at my dr's appointment on Tuesday, wouldn't want them to miss something because I have M.E and almost everything can simply be put down to M.E.

As you may all have noticed, I have given my blog a new look. I have been having cognitive problems lately and as has been pointed out a few times to me previously (sorry all, should have listened before) my last design was a bit "busy" and could make it hard to read. So here you go, black (for me), pink (because it's not too bright but it's also clear and easily readable) and butterflies (which is Niamh's thing). Hope you all like it, maybe leave me a comment and tell me what you think.

Will hopefully have something more interesting to say tomorrow. Will be having a think (brain fog permitting) about the entry I intended for today, wish me luck! Until then here are mine and Niamh's 366 photo's for today:

And Niamh in her rolling stones dress :D

Night all!