Sleep sitting

Today was hard, it turns out yesterday exhausted me more than I thought. I didn't sleep well, Niamh was up at 4 and in bed with me and she hasn't liked the idea of me putting her down all day. All I can say is thank goodness for my sling/wrap, makes everything so much easier.

Dad came round and played with Niamh for a while and made me some lunch, which was lovely of him. Niamh had jacket potato with a small amount of cheese and some mixed veg, and an icepop for pudding. She was very happy with it:

Niamh was very good and had two naps today, sadly I couldn't get any sleep when she was down so just rested. Mum took us both to Asda again as they still have their baby event on at the moment and with massive savings like they have on nappies at the moment I couldn't resist getting some more. This of course, didn't help how tired I was, but at the end of the day with the money situation we are in at the moment we need to save money where we can.

Due to lack of an interesting day we have had today, I thought I would share something else with you. A while ago we had some professional pictures taken of Niamh, here are a few of my favs:

The one with the bear makes me giggle everytime.

Niamh did something strange tonight, she randomly cried out in her sleep, which is unusal enough in itself for her, but when Chris went in to check on her, she was sitting up! She's never done that before. I have a sleep sitting child lol.

Anyway I'm going to go and get an early night, sorry about the boring entry!





She has teeth! :)

Well, this is yesterdays entry. It was a BUSY day, but a good one. Didn't have a good night the night before and woke up in a lot of pain and feeling like a zombie. Was so glad Chris was off not sure how I would have managed alone! We went to town and sorted some stuff we needed to get done and had lunch with Chris's sister in the shop she runs. Then we met up with my dad and sister. My sister had got a letter through the post that entitled her to 25% off an orange contract because she works for the police, she could also use it for up to 5 friends and family (at least I think it was 5!). So her and dad went in to see what they could do, my sister is obviously on orange and so are me and my mum (but my dad pays for me and mum). I came out of it really well off! It turns out this offer only applys if you are entitled to an upgrade on your phone and contract. Which I was (yay!).

So basically, long story short, I ended up with a brand new iphone4 (for free), I chose a white one as everyone else in the family with one has a black one and I wanted to make sure I knew which one was mine. On a really good contract, for a really cheap price, with 25% of a shiney purple case! Whoop! SO big thank you's to dad and Angela. Now Chris gets my old iphone (his broke and he has had a £10 Tesco phone ever since), in time to go on holiday.

Also ran into two family friends Jo and Fi, turns out they were taking four kids to town, who of course were a trouble causing combination as usual. I wished them good luck, and judging by Fi's facebook status later in the day, it didn't go so well and won't be happening again!

We all went for a Costa's together and as we all had a snack I gave Niamh one of her baby chocolate biscuits (which are actually surprisingly nice!). We had noticed earlier in the day that the two teeth she had coming through at the bottom had finally cut, when she bit Chris (he he!). Usually she sucks on biscuits and then they go all mushy and she wipes the mush everywhere! This time though she bit the end off. The expression on her face was completely priceless! It was a definate "o! what do I do now!" but she worked it out in the end! Think dad has a photo, so I will try and post it in another blog.

I tried Niamh on scrambled egg for her dinner yesterday. I'm sure she spent more time squishing it than actually eating it, but she had some and didn't hate it! Heres a pic:



Me and Chris went out in the evening. I'm terrible at leaving Niamh, I've just about got used to leaving her with Chris when I go out without him, it's even harder leaving her went she's not with Chris. As we had a meal booked with my aunt, uncle and cousins from my dad's side of the family, Chris's mum babysat Niamh. We went for a meal at Frankie and Bennies, and there were 10 of us altogether, was a belated birthday meal for my dad and my uncle, (my uncle's birthday is the 9th of August and my dads is the 15th) and it was really lovely. It was so nice to have a meal together, we very rarely all manage to get together, someone is always missing. Although sadly, I suppose, this time it was Niamh (aww!). But she had seen them all on saturday! I always bring her something back when I have to leave her, and the waitress gave me 6 balloons for her, which she loves. Heres another pic!

I'm going to leave this blog here, I'm shattered and have a headache that has been plaguing me for two days now, so will be a pj day for me and Niamh. Will post again tonight, hopefully with something interesting from our PJ day!





Rugy, wetsuits and omlettes!

My sister and her boyfriend, returned from a shot holiday to Cornwell yesterday and were both excieted to see me and Niamh today (more Niamh I expect but thats the only way i'd have it). They came to pick us up and take us to their house for some lunch. They both work for the police and sometimes it's hard to fit in around their shifts, but not today! They both came here straight fromt he gym, with my sister's boyfriend VERY sweaty from running from his, to the gym and then to mine. Niamh was exceptionally excited to see him but he thought he best not pick her up until after he was dry enough that she wouldn't slip straight out of his grasp. Angela on the other hand (other admittedly no where near as sweaty having driven from the gym to mine) launched herself at Niamh, I know she's missed her tons. Niamh threw herself at her. They bought as all some lovely presents, myself and Chris got fudge shaped like Cornish pasties and some apple juice as well as a funny fridge magnet, which I love "the opinions of the husband in no way reflect that of the management!". Niamh got bought a lovely wetsuit which will be perfect for our holiday to Majorca in September and a funny little pink T-shirt that says "it's cool to drool!".

When we got back to theres Niamh got to re-meet Kia. Kia is their dog, she's a sappy, brilliantly behaved, very loveable staf. She used to sit and have snuggles with me when I was pregnant with Niamh, she used to put her big dog head on my belly and look all bemused when Niamh kicked her. She'd then snuggle my belly back, and once again, Niamh would boot her, it was a game, of sorts. Kia has always been very gentle with Niamh, we did all the things to ensure this, introduce them early, give Kia baby clothes that Niamh had worn etc. She has always liked Niamh, it would appear however that Niamh is no longer so sure of Kia. Which kind of makes me sad, but we will work on it. She seems to be happy around her but when she was close to her, Kia licked her and from then on if she came close to her she cried. So we started over, and by the time I left with her she seemed to be more confident around her.

I'm carrying on with the baby led weaning idea, and now plan to do it exclusively when I run out of puree. Even bought two books today on it, one explaining, in detail the concept of it and another reciepe book. So Niamh had omlete and salad with us, it was nice for all of us but extremely messy, lucky for us Kia is a hoover in the shape of a dog!

Niamh spent a lot of time round my sisters sitting on my sisters boyfriends lap watching the rugby. Niamh is a bit of a tv child, she loves it, so I have to limit the amount she watches when I can, but when i'm knackered it's helpful that it entertains her so much. She normally watches baby tv which serves an extra purpose of the possibility of educating her also. Her and my sisters boyfriend were having a wonderful time watching the rugby together:

M.E wise I have been very up and down lately, not nearly as down as I have been, no where near. For that I am so extremly thankful, you would not believe. Today has been a good day, but I have been being as careful as possible, which, unfortunatly, has limitied the amount I have been able to do with Niamh, something I constently feel so guiltly about. Despite what I would wish to achieve with her in an ideal world or situation, the one in which I live in is far from ideal so I have to focus on doing the best I can with the abilties I have. That is what will make me a good mother.

Niamh's first roast diner!

Been a bit odd today. Very tired all day, weak as anything (as in no strength, not inability to hold myself up) and been getting my words out very strangely, all, slow basically. All day. Has been very annoying for me and very funny for Chris.

Chris's mate (and Niamh's godfather) came round this morning and helped Chris to put a LOAD of stuff that had accumulated in Niamh's room into the loft. So now we have almost all of Niamh's room back to put her in when we get back from holiday (mid/end of September time). Sob. It is very beautiful, it's white and pink with butterflies flying up the wall. A pink, glittery blackout blind and little butterfly and gem things hanging from the windows. Has a white chest of drawers and shelves, and a white mirror with pink decorations and butterflies on it (now theres a surprise). All we'll have to do is move her cot in there when we get back. Will really miss her being in with us, but I also think that it's more than likely that we'll all sleep better apart. I will take a photo when it's all done and upload it on here. It was decorated before she even born so has seemed like a bit of a waste up until now. I mean we've always kept her clothes in it, but she's never really been in there much.

Took Niamh to lunch with my parents while Chris stayed at home to finish off things. She had her first roast dinner (minus the gravey). She loved it, although spring greens did just get thrown straight onto the floor with our even the slightest hesitation. She tried to fit a whole yorkshire pudding in her mouth which had be in fits for ages. Then proceeded to throw it into her highchair and sit on it.  Here are some pics of her eating it:

She had us all giggling for ages when she moved on to her pudding (water melon) and fished a small amout of beef out of her bib and put it in the watermelon!! Funny kid.

We then went to town and I bought a dress (I know, me) for 25% of the orginial price (bargin). When I threatened to fall asleep whilst still out, Chris bought us home. Niamh had some more food, and ate cucmber on the couch, and then finished off her meal by sneezing it all over me. Lovely!

Chris's sister and neice came round for a while, which was a nice surprise and something fun to do. Rounded up the day nicely but now means I must have a stupidly early night!

A trip to see the family.

Was sooo chuffed with my bargin buying skills today! Me, mum, dad, and of course Niamh went to see my aunt, uncle and cousins today. Near their house they have a george store, you know the clothing range from Asda, well it has it's own shop. Mum has decided it was disgraceful that I didn't own a coat that fitted me (what with the recent weather and everything) or that I only had one pair of trousers I could wear in the rain (i'm a huge fan of long, wide leg trousers, that tend to become sponges in the wet lol) so she took me shopping to buy me some (yay!). I ended up with two pairs of trousers and a coat (purchased my mother dearest) and an underwear set bought by me (for £6!!).

Niamh also got some stuff, she has eczema which can be quite bad when it flares, and our saving grace so far has been the sleepsuits with the built in scratch mits, that you simply fold over her hands (she has a clever way of getting out of bog standard scratch mits, she shakes one arm until it falls off then uses her now free hand to pull off the one that remains). Only, in most places (usually including Asda) these stop at 6 months. Now Niamh is nearly 8 months old, and still in 3-6 but obviously not for much longer! I've been stressing about how I'm going to stop her from shredding her own skin at night (not difficult during the day, but practically impossible at night) and having researched the entire internet, the cheapest I could find a sleep suit with scratch mits was £20, for one!!!! But they had some in 6-9 in george for £6, so I kind of bought all of them, even the boys ones! She now has 5, so as long as I keep up with the washing, problem solved! We got her some nappies and baby food as well, and a ball with a bell in it because I felt awful for leaving her (she stayed with my dad at my aunt and uncles whilst me and mum went shopping).

It would seem, she spent the time I was away doing anything but missing me. Which I suppose is a good thing as it's means she's socially confident (yay!). She made everyone giggle a lot, and surprised my cousin when she came in to find a baby sat in her front room (she's a bit scared of babies, loves Niamh, but babies in general, give her the ick factor!). She loved her ball, until I let my younger cousin cut the label off, it would seem that was the bit she was actually interested in! Here are some pics of her with my youngest cousin (Lisa), taken by Katy (the other one, thats scared of babies):

A few, funny/annoying/ironic things happened today. Spent ages on the phone to royal mail to complain at them. In my mail box this morning was 8 items, 1 was the yellow pages (boring), a letter for a previous occupant of this address (understandable) 4 letters for the same number at a similarly named block of flats up the road (slightly less understandable) and 2 for the same number at a completely different not even slightly similar road, thats postcode wasn't even a little bit like mine so goodness only knows where that is (fecking stupid). So I moaned at this guy, who was really nice about everything, voicing my concern that if all this post that clearly wasn't ours was ending up at our address, where the hell was mine! Sheesh!

Anyway, the other thing was that I got bought these two pairs of trousers (as previously mentioned) that I could wear when it's raining (which it is always doing at the moment). Seriously if I didn't have a baby I would wonder if I had slept too long and woken up in winter! I have one pair of wet suitable shoes, which, of course, broke the moment I had the new trousers! Dad made the good point that not I have two pairs of trousers and bare feet. Only me huh! Town in the morning it is then!

Airbourne cheese toastie

One of the problems I get sometimes is my seemingly amazing ability to throw things, for no reason. In the past I have thrown an uncountable amount of drinks (pints, half pints, clear, dark, massively staining), bowls of cereal (all over my dad), eletric toothbrushes (out of second story windows at two in the morning) and many other random items! Today, was the first time i've done it in ages, and it wasn't just one thing, noooooo, thats not the way my life works. Today it was, a bottle of water, a can of coke, a warm cheese toastie (not that melted and after I had just cleaned the kitchen floor) and a pack of Niamh's dummies (which I was intending to throw at Chris, but kind of went wrong, hit a wall, hit Chris, opened in mid air and both dummies short to opposing sides of the room!). Things I could not do again if I tried. I also got my jumper caught on the fridge door and no matter how hard I tried could not free myself, I dropped a large slice of mango (intended for Niamh) and it landed on the handle of a kitchen draw, I've been getting my word's muddled all day "bull red" for example. Pish! So, it's been an intresting day in my household. You will all be pleased to know that one thing I definatly did NOT throw was Niamh (phew!).

Also been having problems with banks (surpise) and had to spend 34 mins on the phone to them to try and sort out my internet banking. Not abnormal in itself but they had only just sent me the new information, all this to find out, I have, in fact, not got any money, something I knew anyway! Idoits!

Anyway, although this all is a bit annoying, sometimes saddening and definatly confusing. I can't help but laugh, in fact thats all i've done all day. Everytime I did something new and increasingly stupid I just cracked up more. Well you know what they say, if you don't laugh, you cry and i'm very accomplished in finding the funny in things. A character trait that is equally impressive as it is annoying (considering it's not just my own life I insist on finding the funny in).

Niamh said "dad dad" today, (she said mum a while ago lol) it was hilarous as she continuely said it for about half hour when she was in her pram. She then insisted on whining about being in the bath until I got in with her, then spending a further 20 minutes in there giggling whilst she continuously splashed me using a toothbrush. Interesting.

The pictures of Niamh I'm going to put up today makes me giggle, so I thought I would include it as this entry has pretty much been about things that make me laugh. My sister's boyfriend won her a build a bear at my god-daughter's first birthday charity event. It would seem she likes the box better, well definatly the same:

I'm going to leave this as a light-hearted entry, because I have the potentional to be funny occasionally, Niamh ALWAYS has the ability to make me (and those around her) giggle and, even something as dibilitating and difficult as M.E can sometimes have it's funny moments.

Pregnancy, teething and playpens.

Today my friend asked me if she could show someone my blog. This person was a friend of her brothers, was recently pregnant and has M.E/CFS. My friend was hoping I could give her som help and advice. The answer, as always is of course, anything I can do to help someone who is now in the same position as I once was, I only hope other people would do it for me if asked. Have been speaking to her on facebook chat tonight and she seems like a really lovely person. It made me think back to being pregnant, and what I found difficult throughout.

Getting pregnant with Niamh was a complete surprise, I was told that I would not be able to get pregnant on the huge amount of medication I was on. Well, it turns out I could, and did. When I found out I was SCARED, really, really scared. I have always had problems with anxiety and I just fell to bits. Chris had to have time off work, I had to be with someone all the time, was put on more meds and had to see two separte counsellers. In short, it was hard. I was never in any doubt about what I was going to do, I was always going to keep her, it didn't mean that I was suddenly fearless, or convinced that my body would be able to cope. I was frightened that my body would fail, that it would harm the baby, that I would have lots of complications or that I wouldn't be able to come off my meds.

Then at 8 weeks, morning sickness kicked in. I was always completely shattered (more so than usual, obviously), went off tea, didn't want to eat anything, only drank water and felt sick the WHOLE time. Lucky for me didn't actually vomit too many times. I lived on ginger until 16 weeks though!

At 16 weeks she started to move, which was a wonderful, if somewhat odd sensation.By 17 weeks, she was kicking me so hard she had the ability to wake me up from a deep sleep! I clearly spent a lot of my time thinking at the point, thinking about the situation, about my health but mainly, about the future. Up until this point I had convinced myself I was having a boy, not because I wanted a boy but because I really, deep down, wanted a girl. I figured if I prepared myself I wouldn't be disappointed. To be honest, I don't think I would have been, but better safe than sorry.

At my 20 week scan though, we found out we were having a girl, and it was amazing. However, I had such a hard time truely believing it because I wanted it so badly. We named her Niamh and I started secretly referring to her as Niamhy Pants. I was becoming more and more attached to her, and accepting of the situation. We had many more scans due to pregnancy complications (gestational diabeties, placenta previa, small for dates) and each time I was asking them to confirm the sex for me. And still, I felt the need to have a 4d scan when I was 31 weeks pregnant, a birthday gift from my parents and finally, almost absolute confirmation of her sex. They gave us beautiful photos where you could clearly see her face, a dvd and peice of mind. I knew that my health hadn't hindered her in anyway, he growth was on target and my mediciation hadn't harmed her.

At 35 weeks we had a big scare, I started bleeding. Something I had been prepared for since the placenta previa diagnosis at 20 weeks, but this didn't make it easier to deal with. From the moment I noticed the bleed, until we were at the hospital with the CTG (heart monitor) on, she didn't move, which only sought to scare me further. I was in hospital for a weekend, and this, as anyone with M.E/CFS knows is not good for the condition, but I was lucky. Having worked there as a midwife before I got ill, I had written a care plan for just such an event. They took note of every issue, placed me in a side room, with a disabled toilet, dimmed the light, minimised the noise, everything I needed. This made the stay better, although still hellish, it was not a patch on what it could have been!

For the remainder of the pregnancy I was in hospital almost daily for observation (a deal struck in order for me not to have to remain an inpatient) and on bed rest the rest of the time. My blood pressure got quite high, but nothing too serious. Amazingly I made it to my c-section date when I was 39 weeks and 1 day pregnant. The whole experience was brilliant, and, although I had a bit of a bleed it was really fine. I came home the following day and barely took any pain medication (which prompted my midwife to declare I have a high pain threash hold) I just assumed I was used to worse. I recovered quite quickly and my M.E improved a lot from how I had been! So all in all a complicated but ultimatly positive experience. My one complaint is that I didn't glow, I kept waiting for this "pregnancy glow" that people get and it just never happened.

I hope this helps anyone who may be in the pregnancy situation now, or who is hoping to be!

Niamh is still being grumpy because her teeth are still hurting, but you can see them coming through bless her. Really looks like it hurts.

We went to my parents today so dad could look at some appeal forms for us. My parent's have hard wood floors so we put her travel cot up and sat her in it with her toys to play. She LOVED it, which is brilliant because I can't always get to her fast enough (with my sometimes limited movement) when she looks like she might fall over. So this fixes that problem! Here is a pic of her in it playing away!

Anyway, I'm going to disappear as I'm not officially completely shattered, too much writing. If anyone is still reading this (and I haven't bored you all to sleep) then thank you for reading. Goodnight!

So... step on the rake of life.

I was with my dad today, in town, disucssing my financial situation when he said something that struck me as very odd, very true but a compliment all the same. He said he admired my maturity and my ability to cope with the situations my life, my luck and my disease have put me in. I asked him what he meant to which he said, very simply "life keeps giving you rakes to stand on, but you just stand on it, let it hit you in the face, sort yourself out and get on with it". Okay, so, my immediate thought was, "what is he on?" then my mind took over and thought, I suppose I do have bad luck with my health and other aspects of my life but I do try my hardest just to shurg it off and get on with it. Just as I was coming round to the idea he added "at least you're not a man and the rake doesn't hit you in the nuts first!". This, of course made me nearly wet myself laughing and cheered me up no end. So basically I plan on continuing to step on the rakes life hands me and I plan to continue to shake of black eyes and the headaches and just get on with it.

I have my daughter to focus on, to make every day worth it. No matter how much pain there is, no matter how much confusion, no matter how rubbish my immune system gets I will do the best I can, for her. No question, whatsoever.

Speaking of Niamh, it looks like she may finally cut the teeth that have been giving her jip for the past few months. Even if she's been unsettle for her, for the past few days, she's still been awfully happy.

A lot of people wonder how I planned to use a wheelchair and hold Niamh. Well when I was pregnant I always conisdered a baby carrier, but they are all so weak, and the straps are so thin, would play havoc with the FM and with my joints. So the answer, a wrap. The one I have is a moby, it distritbutes the weight better and has wide wide straps. There are many different ties and carries, including on the hip, back, facing inwards and outwards. She likes to face inwards and it's simple for in the wheelchair. The only problem is she doesn't like being worn by Chris.

Here are some pictures of Niamh in the sling :)

It's turned out to be brillant for her reflux as well, as being upright really helps. Also, for when I'm too exhausted or in too much pain to carry her and she's having a clingy day.

Anyway I'm going to go now, with all the rakes I've been stepping on lately I'm kind of tired lol!

3 Years

Me and my husband Chris have been married for 3 years, today! I am very lucky to have such an understanding and supportive husband, with my health and in pretty much everything I do. In the time we have been together (over 7 years now) he has been such a constant presence of acceptance and calm, and I honestly am so grateful for that. We have had our ups and downs (as I'm sure all couples have, whether or not one of them happens to be disabled), highs and lows but he has been there for me throughout, I can only hope I have been there for him even half as much!

As is obivious from previous posts, we have been having money troubles recently, so couldn't really afford to buy each other things of our anniversary. This somehow didn't stop him finding two cards for me, one funny, one semi-sappy (because men can't do completely sappy, it's just not done!) and buying me some roses. We managed to buy approx £70 of food shopping, for £28.50 (Chris's discount and an army of vouchers) including a major junk food feast for our wedding anniversary picnic, AND my parents took us (and Niamh) out for lunch at Nandos (YUM!). So all in all was a good day. He even surprised me with candles, incense and wine!

Here is alarming disgusting wedding photo from 3 years ago today:

Niamh has had serious teething problems today, bless her. She's been snacking on cold cucumber left, right and centre and has had to have two doses of calpol and one of ibruprofen. She has only wanted me all day, which as lovely as it is for me, it was Chris's day off and she just refused to settle with him at all. Which was also bad for me in a way, as he actually had to get me up from a nap to come and settle her, something worringly he wouldn't do without very good reason. Poor darling, her reflux has been playing up too so she's only really been happy, upright, on me, with her dummy in.  She threw quite the strop in Nando's as well, once she had thrown all of her food on the floor and there wasn't any more for her! I can't help wondering if she's somewhat spoilt, but from all the reading i've done, at the moment she's simply too young to understand that she can't have everything. Or that sometimes there just isn't anymore!

I'm going to head off to bed as we are probably looking at an unsettled night with Niamh, if today is anything to go by. Not that she has been dreadful, not close, just unhappy for her. I know Chris does all of the night feeds, and looks after her at night, but I have this motherly tendancy to worry.

The stupidity cycle

This, once again is technically yesterday's post... again. Was very busy yesterday and when I came home I went straight to bed. Please everyone that reads this, can you cross everything for my little God-daughter please. She's back in hospital again poor pickle.

I worry, all the time. I'm a worrier, its what I do, and it's what i'm good out. This presents a major problem, not the least of which being it's no fun to worry! Emotion affects M.E, stress affects M.E and when you're worried about something I would pretty much say it counts as both. THIS is the stupidity cycle. I'm worried about money, or our lack there of, this causes me to become both emotional and stressed. This, in turn, makes my M.E worse, which clearly worries me futher, I worry then that I have relapsed and that I may not be able to look after Niamh, causing stree, causing further worsening of my M.E. I think the reason I call it the stupidity cycle is obivious. If I tried not to worry so much, my health would, in fact improve (or at least not worsen) but I can't, i've tried and failed, I will always be a worrier and the best I can hope for in that department is better control over the levels of stress this induces.

This is going to be a very short entry, for two reasons, 1) I'm planning on writing today's entry later (yayness!) and 2) I have major brain fog so sorry if this doesn't make any sense at all!

On a big plus side had a mess around with Niamh and my webcam yesterday so here are a couple of pics of me and her:

Anyway must go, it's Chris's day off and i'm to use this time to have a nap while Chris and Niamh have some daddy daughter time. Will write later.

I have a daughter who responds to the name pants!

When I was 20 weeks pregnant, we found out I was having a girl and named her Niamh. I nic-named her Niamhy Pants. This kinda stuck. Since birth we have used Niamhy pants a LOT. Recently my sister and Chris have kind of dropped the "Niamhy" part, and in church today I accidently did it, and she looked up at me. My first thought was... "crap... she thinks her name is actually pants!". Thankfully she also responds to Niamh... phew!

She has made me laugh many times today, making her excited squeaky/chatty noises the whole way through the vicars sermon, and through the section of the service my dad was leading she was playing with a handbell and trying to throw herself at him! She was so tired by the end of the day that she fell asleep in the bath bless her.

I was watching TV tonight, and although I don't like Glee the glee project on sky one is one of my guiltly pleasures. On it they were singing the song "Bulletproof" by La Roux. I listened to the lyric's and realise that although they are not describing this (obviously) if you imagine that they are directed at M.E/CFS and FM then they describe well how I feel about it at the moment. These are the lyrics to which I am referring:

"Been there, done that, messed around,

I'm having fun, don't put me down,

I'll never let you sweep me off my feet.

I won't let you in again,

The messages, I tried to send,

My infomation's just not going in!"

"This time baby,

I'll be, bulletproof!"

"Tick, tick, tick, tick, on the watch,

And lifes to short, for me to stop,

O baby, your time is running out"

"I won't let you turn around,

And tell me that i'm much to proud,

And all you do is fill me up with doubt"

The bulletproof part is especially relavent to my current attitude towards this disease, that this time, or from now on I am going to do my best to be bulletproof. I can't so much control what the disease does to my body, and what I end up having to do because of it but I can control my attitude towards it. From now on, that attitude is always look at the positive. Something I think I do regularly but that I could be better at. Thats my goal, to be better at it. One of the few things within my life, that I DO have control over.

Anyway, sorry it's a short entry but been on strongish painkillers all day and they are kicking my butt in the knackered department!



Money, Money, Money.... or lack of!

This is yesterday's entry, technically. I ended my last entry with a very small rant about money. Well that's the tip of the iceberg. Hopefully this will provide an insight into how my finances work, and why it is such a stuggle.

Don't get me wrong, I am very very glad of the benefit system the UK has in place, without it I probably would have had to work myself to death. Just it has a lot of holes, gaps and grey areas. I seem to fall into all three.

I recieve DLA (Disability Living Allowence), and as Chris works we have his wage, plus child and working tax credits and of course child benefit (not that that allows you to even buy milk/baby food and nappies for a week anymore). We get a contribution to our rent (housing benefit) and our council tax (council tax benefit) due to our situation. However, once all bills are paid, even with Chris's wage we have somewhere in the region of £5-£10 spare at the end of the month, which obviously presents a problem if, for example, either me or Chris (or Niamh for the matter) require new clothes (this has been an issue over the past few months as I've just lost almost 3 stone).

I'm not complaining, we can survive on what we have, and for that i'm very greatful. Just along the way there have been many issues and complications and my family have had to bail us out many times, and I am very lucky to have a family that have been in the position to do that. Let me explain.

When I was 5 months pregnant we moved. Clearly it would have been stupid to look for a one bedroom property to rent, when I was going to have a baby. So, we found the two bedroom flat, the problem was, until I actually had Niamh we were only entitled to the housing benefit allowence for a one bedroom property. This was totally understandable, but we just didn't want to be in the position where we had to move with a baby. This meant that I used much of my savings towards rent.

Working tax credits would have helped us a mjorly at this point, but because I didn't work (couldn't work, still can't) we couldn't get it because Chris wasn't 25. Stupid system. We fit all the requirements, except he was too young, idoicy! We asked the job centre, and the tax credit people and NO ONE could tell us why you had to be 25 to recieve them if you didn't have kids!

Speaking of, getting stuff for Niamh before she was born would have been actually impossible without my family and the remainder of my savings. Although I am too ill to work, classed as disabled, and recieve DLA, have a blue badge and a disabled bus pass, I can't get ESA (Employment Support Allowence) because Chris works too many hours. He doesn't earn enough for me not to recieve it according to the job centre but because he works more than 24 hours a week I simply can't recieve it. Due to this situation, even the lady we spoke to at the job centre agreed that we would be better off if Chris didn't work, and officially became my career. He would be more than entitled to careers allowence, as at the moment, even with work, he cares for me in excess of the 16 hours a week requirement. If he was to leave work, I would recieve ESA, this is a passport benefit so our full rent would be paid for us, we would also get the full amount of council tax benefit. Chris would recieve carers allowence, we would get income support.

Because I wasn't on any of these benefits before I had Niamh, and obiviously I didn't get maternity pay of any kind, I wasn't entitled to any finanical support before she was born. Making purchasing the stuff required for a new born impossible independantly. There is a one of payment of £500 that can be given if you are on selected benefits, but I wasn't. I did recieve the health in pregnancy grant which I think is either £109 ot £190 but everyone gets that regardless of their finanical situation. I used the remainder of my savings and my parents helped. I did everything as cheaply as possible but it was still hard.

Everytime I think i've cracked it, I think I know how we can cope, how we can survive something changes. For example our child and working tax credits have dropped dramatically at the start of this finanical year. So now I have to rethink everything, the money we have coming in has reduced but the amount of bills we have to pay is obviously still the same. ERGH! I don't know what to do.

To add to this, I have major brain fog at the moment and couldn't think my way out of a paper bag, so I can't really sit down and work it all out by myself, probably not even with assistance at the moment. If I could do this it might relieve my anxiety a bit, but I can't so I'm just constently worried.

I know the situation is the same for many people with M.E/CFS and FM. It's a sad situation.

All about Chris

Well, sorry I didn't write yesterday it was a bit of a tough day to be honest, not so much physically. Went up to the hospital with the youngest of my god-children. She has many medicial conditions and has been in and out of hospital her whole life. Recently though, she's gone quite a while without any major admissions or transfers. However, this looks like it may be on the cards, am crossing everything that it's just a minor blip and over night admission. Leah (my best friend and god-daughters mum), if your reading this, I did not over do it, I am careful and you know full well if the situation was reversed you would be doing exactly the same thing as me! So anyway, that explains why I didn't write yesterday. I'm not going to go into further details, thats not my place.

I decided to make this entry more about Chris, my husband. He has changed and grown up so much since we first got together, over 7 years ago. When we first met we were both working in a bar, which was more like a constent party than and actual job. It was great fun and the best job I'd ever had. Until, 6 months into our relationship, I got ill. I went from training as a midwife and working a further 2 jobs, to permantly on crutches, in a wheelchair, then, finally, bedbound.  All within a few months and in a new relationship. I begged Chris to leave me, as far as I was concerned I was going to loose quite a portion of my life to this disease and didn't see why Chris had to to. I begged him, I shouted at him, I swore at him, I screamed at him, but none of it made any difference. He said he loved me and wanted to stick by me, care for me, look after me. He was only 19.

He reduced his hours at work and moved in with us, so that he was at home when my dad wasn't there to care for me. My dad would look after me in the evenings whilst Chris was at work, and Chris cared for be throughout the day and night. It can't have been easy for him, at all. I barely moved for months, if I did have a conversation with him it was usually garbbled and somewhat confused. I doubt I rarely made any sense at all. He would have to carry me to the toilet, and bring me food and drink, more often than not he had to feed me it, like a child. It was undignified, humilating, but to be honest, when you are that ill you simply don't care.

It seriously strengthened the bond between us, and in 2007 on a rare and surprisingly managable holiday to Majorca, he proposed to me. We married in 2008 and I WALKED down the isle. I made it through the whole day without my wheelchair (although it was always on stand by) through sheer determination. I even went home for a nap between the wedding breakfast and evening reception so that I wouldn't have to use it.

Since we've been married, and ultimatly had Niamh our bond has cemented further. He understands my inability to do things, and that if I ask him to do something it is often because I cannot figure out a way of doing it myself. He knows the signals that i'm not coping better than I do, and often has to tell me to slow down. He does all the night stuff with Niamh, and gets up early in the morning with her, waking me just before he has to leave for work. He has had to have the odd day off of work (or a week in one case) when i've been too ill to manage alone. This is usually when I get added infections on top of everything else.

For many reasons i'm glad it was me that got ill not him. Firstly, and most obiviously, I wouldn't want him to go suffer like I have. Secondly however, I don't think I could have been so kind, understanding and selfless. I think I could be now, but not then. I'd love to say I would have been mature enough to do everything he did for me, but, although I would have tried my best, given my utmost, I don't think I would have been able to.

And still I used to throw it all back in his face. When I became well enough to function again (all be it not well) I used to scream at him when I over did it. I would tell him I was trying to make up for all the time I spent ill, that he didn't know what I had lost, what  I had missed out on. Stupiditiy. Of course he did, he missed out too.H spent all the time I was ill there beside me. I cannot believe how spiteful and hurtful I was. But, once again he understood. I was trying to come to terms with how much my life had changed. That it would always continuously change now. There will always be relapses and gentle remissions. I will constantly be able to do more, or less, depending on my health. To be honest, I still haven't got used to that. I'm getting there, but I don't think i'll ever completely get the hang of it!

As for Niamh, well she was brilliant yesterday. We had lots of fun playtime together! We made some homemade, cheap toys to play with. Here is Niamh playing with them:

They had to be homemade and cheap because we are having money problems at the moment. But thats definatley another entry! The flipping annoying complications and situations that come with this disease are unending.

Waiting in... not so good with four walls anymore!

Today reminded me why I hate being stuck in so much, brings back too many memories of before. Had to wait in for Niamh's passport to be delivered, something simple, with a very clear end. But I still felt confined, knowing I couldn't go out, not for the same reason, but the same restriction. Before people think I am completely mental I realise this is stupid, really, really dumb in fact. By having to wait in all day I wasn't going to suddenly be stuck in a room/house for unending period of time, but sometimes thats how it feels. It reminds me or some very negative times in my life and I have to fight not to be overcome by them. Making me very vulnerable, somewhat stupidly.

The major issue here is my tendancy to over do it. After i've been confined due to illness for a few weeks or days, or even a few hours if it isn't illness related, I go mad. I'm so hell bent on not ending up back where I was (scared to do anyting, or move forward for fear or moving back instead) that I over do it instead. For example, today. I didn't sleep well last night because of money worries and not so serious amounts of pain. Didn't manage a nap with Niamh afterall becasuse just as I got my head down she woke up (flipping typicial lol) and decided that cleaning the house was a good idea (turn's out not so much). So, although already limited, I tired myself out further and the stupidity doesn't end there! When Niamh's passport had been delivered I felt like I had to get out. So I packed Niamh up and walked to town in the rain to buy milk and bread, when I live a few minutes from the coop, DUMB! But I suppose I have to make these mistakes in order to learn from them. But it turns out I am infact learning from them, I can realise I've done too much before the next day (which is when I used to notice, only because I was suffering) and take action, like for example, will take meds earlier tonight, and some medium strength pain killers (anticipating pain) have a bath before bed to relax my muscles and get an early night. These things, I would not have done before!

This is proof that, although I am MUCH better than I was before, M.E still has a drastic affect on my life. I must always think about what I can or can't do each day, what I can or can't eat, what I can or can't wear, when and which meds I need to take. When I over do it, accidently or otherwise, everything must be adjusted in order to prevent a relapse. I must not, under any circumstances suffer a relapse if I want to continue to look after Niamh independantly. If I did have one, because I over did it, it would be simply devastating.

So I am learning to hold my head up, focus on Niamh, and whilst being careful, let nothing stop me. I have proven many times that I can adapt, and luckily for me, so has Niamh. So we will manage my health, together.

She has been brilliant today, as she is always. Even if she didn't really want to nap as much as usual because she's teething, poor pickle. She made my heart melt today, she was in her bouncer thing (it spins 360 if she wants it to) and she was turning to follow me the room, grinning with her arms out to me. When I went to her, her legs started kicking and her arms were flapping and she squealed when I picked her up and giggled. It was the most amazing moment. Love her so much! She's worth everything!

Baby Led Weaning

Was too shattered to write last night so here is yesterday's entry, will try and keep up today!

Well, what a mess! Niamh is not keen on homemade puree's, despite my best intentions. It doesn't help that she's completely terrified of the hand blender. I have been feeding her the organic food pouches which she loves, but is obiviously a bit on the expensive side. To be fair it's probably not that different price wise from buying organic fruit and vegetables and making them myself but still, i;m looking for a cheaper option.

So I thought I would try a bit of baby led weaning on the side. I now give her some of the puree and then finger food. She loved it. It made a MASSIVE mess! Especially when she got hold of the pouch of left over puree and squeezed it everywhere, o well! Here is a picture of the artistic mess she made for me!

I made the decision not to beat myself up about using pouches. If it saves me time and more importantly precious energy that I can then use to play with Niamh then so be it. I spend an awful lot of my time feeling very guilty about the way I parent. Mainly because I think my parenting style would be very different if I wasn't ill. I think I would lean toward attachment parenting, I definatly would have breastfed if it hadn't been for all the meds i'm on. She would have made a brillant breastfed baby.  I love co-sleeping with her but can only do it during the occasional nap as I don't want her to become dependant on it as I can't do it at night, once again because of medication. Sometimes I get really upset about it, but realistically I know that I am doing my best, I try my utmost to make the best enviroment for her despite my situation.

O and by the way, she LOVES her car. It is SO noisey! I think i'll get used to it eventually though. Most of her noisey toys, and baby tv have just become white noise to me now. I really hope I do, because otherwise I think it might drive me completely insane!

I've been having hip problems lately. Woke up in the middle of the night saturday night after hearing a massive crunch. From the pain that followed I can only assume it was my hip! Pain I can deal with, it's the lack of sleep that results from the pain thats the problem. The next day Chris has to do a boot sale to try and get us some money, so my parents took Niamh for 3 hours so I can sleep. I hate having to do that, but sometimes it is really important. The pain meds I needed to take to allow me to sleep turn me into a zombie, so I felt I wasn't safe to look after Niamh alone. Hence the reason I rarely take them, I wouldn't want to be so out of it if she needed me. Sometimes needs must and I am lucky to have such a supportive husband and family, and a tight network of friends to help me when I need it.

Anyway, I'm off, want to have a sleep while Niamh's down for a nap. Hope her passport gets delievered early so that we can go for a short walk later!

Another day!

Niamh got a new toy today, an expense but an important one. She needs things to keep her amused for when I can't, for when I don't have the energy, concentration or ability.

She has a bouncer and play mat when she was first born, then dad bought her a mamaroo (high tech bouncer) and a swing when she got ill with silent reflux (before when knew what was wrong with her), mainly because she wouldn't remain in one thing for long without becoming distressed. I had to make a kind of baby assult course in my living room and move her from object to object as she became upset. This seemed to work. When we found out about the reflux though we made one simple investment (after a lot of research), a moby wrap. This allowed me to tie her to myself and keep her upright (helping the silent reflux) and close, warm and comfortable. The fact it was a wrap meant that her weight was spread out over my shoulders, back, waist and hips, thus saving my joints and muscles, and there were many ties and carries incase I was having problems with certain areas. It also meant she could rest and sleep when she wanted to, without me having to hold her myself.

Since she turned 4 months these (other than the mamaroo which she can still use and still loves) have been swaped for other, more age appropriate pieces of equipment. A in door bouncer, which has since be swapped for a stand alone one as it turns out I can't get her in or out of the door bouncer alone! And her new today toy, a bouncer/walker/push along walker that I got from ebay for £15. Very chuffed, as it's cute, pink and looks like a car. Plus, Niamh will LOVE it because it's noisey, and I like it because you can turn the sound down!

I spend a large percentage of my life feeling guilty because I let her watch TV. I long to be the completely hands on parent, that can spend all my time actively playing with my child and always finding new and inspiring things for her to do, but in my reality this just isn't possible. I would rather that the time I can set aside each day to play with her is good quality and that we both get the most out of it. I always put the TV on educational channels (well as educational as is suitable for her age) and have invested in some children's TV dvd's that I watched as a child so that we can enjoy these together (although I feel this may be a little more selfish than selfless as baby tv is doing my head in).

Well thats about all the energy I have for today. Cross fingers that Niamh enjoys her new toy!

Welcome to my world.

I often get asked why. Why I had a baby when I couldn't really look after myself. The answer, it seems, is simple. Because she did not give me the choice. She was a complete surprise, and there was no way I was going to get rid of her. She knew I needed her, when I honestly believed the last thing I could become was a mother.

She turned my world around. Yes, I'm still ill. Yes, I still have a wheelchair, crutches, a bath lift and many other forms of mobility equipment. Yes, I do still have to spend the odd day in bed, and yes, my husband still has to have the odd day off work because I'm too ill to look after Niamh. BUT, I'm not always in the wheelchair, I don't have to use the bath lift everyday, my days bed bound are few and far between and my husband CAN work. This, last year, would have been impossible. But when I had Niamh my entire world changed and for the first time in a long time it was for the better.

I look after her, pretty much independantly most days. We have to find our own ways round things, quite often in fact. But we manage, we get there, and most importantly we are both very happy. I'm really very lucky, she seems to know that I need her to be happy and contented, socialable and smiley because I have to rest. She has two, two hour long naps a day, when I make sure I sleep too, and is very happy with other family members when, on the rare occasion, I do need a little extra help.

Before it was a very different story. Bed-bound for 18 months, not even able to get to the toilet alone. I had no idependance, no privacy and no dignity. You have to learn to forget any of these things exsist. I did what I people told me, took the mediciation people gave me and ate and drank only what was brought to me. I lived in one room for over a year, with a black out blind, curtains and a blanket pegged over the top of them. I couldn't stand light, of any kinda. Quite often I couldn't stand noise. I couldn't read, I did not have to cognitative skills. I couldn't eat, I did not have the energy, often someone would have to feed me. I could not hold a conversation, my words would get muddled or come out backwards. I forgot who I was, who my family, the people I loved most in the world were. I couldn't move and was in constent pain. My life crashed and burned around me.

I was that way for years, and then suddenly Niamh came into my life and everything changed. Welcome to my world. This is my story!