The gorilla in the room.

I know I said I was going to have a moan about the changes to DLA, and I want to, I just don't have the energy. Trust me it has all got worse in my eyes since yesterday as I've been doing some calculations about what we have coming in, and well basically we don't. So yeah, headless chicken. Anyway will moan about that tomorrow, or the next day, or when I stop worrying about it all long enough to get enough sleep to be able to function well enough to write something that makes sense! Unlike that!

On that note, this entry is something that I saw someone reading on youtube, found it very true and had to find the source and post it on here. I am unsure whether or not I found the original source so I have pasted the link to the blog I stole it from at the end of todays entry.

"Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of commitment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house. "

So true.

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

Me, messing around when mum took us out for afternoon tea:

And Niamh, playing with my phone :)

And as promised, this is the blog I stole the piece of writing from: http://batsgirl.blogspot.com/2008/04/gorilla-in-your-house.html

 

 

Tests, jabs and Nando's

Sorry for not posting yesterday but really was not well enough :(. So this entry is going to be two entries in one.

Tuesday 17th January 2012

Today was interesting. I had some tests booked at the drs early in the morning and Niamh had her jabs straight after. The test was painful and kept failing to had to have it repeated 5 times, not brilliant. Took a bit of a tole on my body after so spent most of the rest of the day on the sofa that Chris had made into a bed for me. Niamh hated her jabs, she screamed for ages and wouldn't calm down. Then eshe wouldn't be near the nurse that did them without crying, bless her.  We had to pop to tesco to get some bits on the way home, and Niamh fell asleep on my lap in the wheelchair.

For lunch Chris took me and Niamh to Nando's for lunch. His idea, sort of like a treat for having been poked and prodded all morning, and Niamh got a toy (we always buy her a little something after her jabs). We also bumped into my sister and her boyfriend on the way to town and they joined us for lunch, which was brilliant.

When we got home I just lay on the sofa. Niamh is used to me having to rest, but she's NOT used to me not getting up at all. I spend the majority of my time resting on the sofa, but I can get up and get myself a drink (all be it slowly). So she was concerned, little sweetheart, and she kept coming over and wanting to snuggle with me. Then after about 20 mins she would jump down, play for a while and come back. It was like she was checking on me. She is so sweet.

Here's mine and Niamh's 366 pictures for today:

I posted this even though it does show me ill. Not the worst i've looked though, by far.

Sound asleep on my lap, in the wheelchair. She was sooo tired before her jabs, and all the crying after them really knackered her out.

Wednesday 18th January 2012.

Haven't done much today, been trying to behave myself and get some energy back from yesterday. Rested most of the day, met dad for lunch and had Angela round. Then I got a call from a mate who moved away a while ago and whom I haven't seen since August, saying he was nearby and could he pop in. OF COURSE HE COULD! He's awesome, I haven't seen him in ages, plus it's his birthday today!

It was a nice surprise for Chris as well, as he was there when he got home from work. When I was pregnant, (a few days before I had Niamh I think) Chris and Dave surprised me when I got home from my parents and he was there, so we thought we would surprise Chris this time! It was nice, we had a catch up, he got to meet Niamh and play with her (Niamh was possibly a bit too excited by it all) and had dinner with us. We then had some more time to catch up with each other before he had to head home.

Must get an early night tonight as Chris is on a late tomorrow meaning I have to be up at pretty much the same time, and give Niamh her dinner and bath and put her to bed by myself. Not to mention that I'm having afternoon tea with my mum in the afternoon (how civilised). Really looking forward to it.

So I'm off now to have a bath and go to bed. Hoping to sleep a bit better tonight, I spent quite a chunk of last night worrying about the benefit reforms and how they will affect us as a family. Especially if they change/remove my DLA, but that's a whole new post. Trust me it will be too long for me to complete right now (well at least if I want to make any sense!).

Here are mine and Niamh's 366 pictures:

And Niamh in my sister's coat!



Night all!

Too tired today.

I'm not really up to posting a whole entry tonight. Shattered from yesterday and from struggling to take Niamh to gym babes by myself (but she enjoys it so much). So just wanted to put a small something up. My brain is completely fuzzy as well so sorry if it doesn't make any sense!

Benn having quite a few bad days lately, but i've had good day. Off to the drs tomorrow for tests and such, Niamh has her 1 year jabs as well :(

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

And Niamh.... What me? Make a mess? Never!

Anyway, thats my lot for today, going to go have a bath (with a bit of help) and a stupidly early night (hopefully with a little less help!).



Wheelchair accsess problems... now theres a surprise!

Today started out interestingly, with my complete inability to get myself out of bed, even with my bed guard! Had to call Chris, lucky for me it wasn't that I was too ill to get out of bed, just that my legs appeared to have removed their connection from my brain. Everything I was telling them to do, they were ignoring! Lucky that sorted itself out in a few hours.

Chris was going with our friend Judd to play squash, and next to the squash courts in the same building is something called cool kids, which is a soft play area for children, so I took Niamh in there. She loved it for the first half hour or something but then started getting grumpy so I sat her down to have a snack and wait for Chris and Judd.

We made it home just in time to get ready to go out for lunch with my parents. At the end of the year at Tesco they give the staff a book of vouchers, one of which was for 20% off at Cafe Rouge, somewhere me and Chris clearly couldn't afford to go otherwise.

We got ready to go and set off for the short walk to the restaurant. Only to find that one of the main roads was shut. I don't really know how to explain this. It's a one way road, that is an older street, that I live on and you have to walk down to get into town. Well, if you don't want to go a really wibbly wobbly way that is. They had had to shut it, it turns out, because of an assault at 3am, you couldn't use the footpath, on either side at the bottom of the road. You could use the wibbly ways to get to the end, but then you had to go either left or right to get to a crossing for the main road. The crossing to the left involved going down some stairs to a subway (yes, stairs) so the other was the better option. Well, you would think so. The road they had shut has an ornate metal fence bordering it on both sides of the road and they had shut off the pavement before the metal fence ended, meaning if in a wheelchair, you couldn't cross the road under the subway or cross the cordoned off road to get to the traffic light crossing on the other side. You were fine however if you could use stairs, or jump the ornate fence.

Now, Chris got cross, so did my dad, so they went ahead with Niamh in her buggy. I stayed and spoke to the police woman and nicely explained that "did they realise that there is no access at all for wheelchair users" to which I got the response "there's nothing I can do, this is a crime scene". I totally understand that, but they had shut a good portion of the road (turns out the crime actually happened further up) and surely they have to at least consider how people are going to get round these barriers.. Really, I think she just wanted to say, "tough, go home, you're not allowed to go out for lunch like everyone else, because your body doesn't work like everyone else's".  It was also clear that they had used the end of the fence to tie the tape to because it was easiest, which is fine, but not helpful. Now I have lived in this town for most of my life and know that there is another way, and that same subway has a ramp access that is on the other side of another busy road, but I hadn't said anything to this woman on purpose, as I would have been completely happy with her simply explaining how to get to the ramp. It would have shown me that they had put some thought into access for wheelchair users, but she didn't. I have a complete understanding that I can't go under the barriers or anything, and to be honest, I wouldn't want to. It would have been nice to have some evidence that they had put some thought into it. But no. Of course not. It just really makes my blood boil. ARGH!!!

Anyway, that's enough! If you guys have had any similar experiences (either directly or have heard of them) feel free to share, it will make me feel less alone in my anger!

A nicer subject, here's mine and Niamh's day 15 366 pics!

I'm going to leave it here for today, but am super proud of myself for being able to do two entries in two days!



Niamh's first birthday!

Sorry for the lack of updates, I just honestly haven't had the spare energy to use to write. I am feeling a bit better now, still very drained but better, to be honest I don't think that Christmas is a fantastic period for my energy levels lol!

Anyway, since Christmas day there has obviously been boxing day, which we spent at my in laws. Only one small problem, they got a cat for Christmas and didn't tell me. This is a big issue as I am very allergic to cats (and dogs, and rabbits, and probably anything with fur). I ended up triple overdosing on the hay fever tablets they had, taking my inhaler one hell of a lot and itching for days. So I think my body fighting the allergic reaction drained me further, shame, because the kitten is damn cute!

New years eve was spent in, not well (as is normal for me) but this year me and Chris managed to have a picnic of junk food in the front room (last year it was literally in my bed) and our mate Rog popped by for a beer before going out (it's good living practically in the town centre sometimes!). However, wasn't well and was still in bed by 9, hee hee. Was woken up at midnight by whatever was going on in town, and a load of fireworks and a scared Niamh, bless her.

Then on the 10th of January was Niamh's birthday. It was lovely, my best friend (and Niamh's godmother) and her clan (her, her husband and 4 kids) came round to see Niamh in the morning. Sadly we don't get to see much of each other between my illness(s) and hers (she has AS), the fact that she has 4 kids and last, but by no means least her youngest is my God child (as are all her children) who is ill and often in and out of hospital. So was really nice that she had a good Christmas, with no hospital admissions AND could also make Niamh's birthday. I had obviously done a lot all day and by lunch time was very tired, a bit wobbly but still trying to do everything, this, earned me a telling off from everyone! The kids helped Niamh open some presents and they all left when she (and I) went for our afternoon nap.

We had a budget (not a big one) but we managed to get Niamh a little table and chair and a few other presents (turns out a budget goes much further in the January sales!). All ready for the birthday girl:

She had a couple of balloons as well, one from me and Chris and one from my parents:

There was a bit of a theme going on (in case you hadn't already guessed) it was pink and purple and butterflies. Niamh wore her pretty purple party dress:

We had the family round in the evening, for party food and so they could all see Niamh on her birthday:

She had a butterfly birthday cake, AND I somehow found the energy to bake some cupcakes for her (did take a while though, thank goodness mum bought me a cupcake maker last year, wouldn't have been good with the oven!):

She had a lovely day. I enjoyed it too, even if I did feel like hell at the end of it, and for a few days after, it was TOTALLY and COMPLETELY worth it!

I have started doing two albums on facebook, the 366 type ones. Only I am doing it a bit different, I am taking a picture of Niamh everyday and myself everyday. With Niamh it was to see how she changed and grew over the course of a year. The ones of me though I'm not so sure, it's not like many of them will look any good, I think it's more that I want to show how these illnesses affect me, and that I don't always show it. How many people do you know that choose to post pictures of themselves on the Internet when they're ill, not many people are brave like that. I decided that it was important to raise awareness that M.E isn't all down, there are good days and bad. For once I'm choosing to share the bad too.

Here's mine from today, in a funny hat:



And Niamh's from today, she looks like a pirate!:

Anyway, that's quite a long entry, that has taken me a number of days to complete, so I'm going to go and rest now. Will blog again soon, am aiming to go back to everyday blogs, hopefully!







Niamh's first Christmas.

Well that was tiring, enjoyable but tiring. I managed to be healthy (well as healthy as I ever get) for Christmas (first time in 5 years). Obviously wasn't easy but we all had a good time.

Niamh gets up at 5, and there was no way that Christmas was starting at 5am and I was surviving the whole day. So, me and Chris made a plan that she would go down for her nap and when she woke up it would be Christmas. When he had put her down Chris woke me up and we sorted out the front room ready for when she woke up. With presents and stockings in cute little piles.

When she woke up we had breakfast (whilst she had snack time) and then set about opening presents. She was excited about the first one, but her interest soon disappeared!

Me and Chris however, soon realised that, although she does not have much hair (still) she could still have a few Christmassy accessories!

She got some lovely presents from various people, and had a really good time figuring out how they all worked!

One of her god fathers came to visit her to drop off her present and stayed for a while. Niamh enjoyed this very much! Here's a picture of him with her, believe it or not this is her very first time holding her (she will be 1 on the 10th Jan) as he has point blank refused until now!

Then it was off to my parents for Christmas lunch. Niamh was very grumpy the whole way through the meal. Turns out (we now know) that she was having really bad teeth problems (still is now). But it didn't stop her from entertaining us all when she won a giant plastic paperclip in a cracker, and promptly glued it to her head with mash potato, whilst becoming very confused as to where it had gone!

She did look very cute in her special Christmas dress and "santa baby" hat!

And once again, preferred the boxes to the present:

And by the end of it all she was well and truly worn out!

She wasn't the only one. I love the festive period (these days, I used to be the grinch) but now I have Niamh I've found myself really looking forward to it. But seriously, if I thought Christmas used to be exhausting, previous experiences had nothing on this one. It has taken me since Tuesday to write this, and I don't even know if it makes any sense!





Running baby

Hey everyone. Sorry about the lack of posts, but am still (believe it or not) on antibiotic's (yes more) and they are still giving me some wonderfully interesting side effects! Mainly being cognitive issues, but these seem to have resolved themselves (finally) and I am able to read and write again (and sometimes it may even make sense!).

Anyway, health wise I'm not brilliant but have improved significantly since I last posted. I am hoping that I might even be vaguely healthy for Christmas, but I'm keeping this hope at arms length as I haven't actually managed to not be ill on Christmas in years! Whatever happens though I am actually seriously looking forward to Christmas this year, very unlike me as I am usually the grinch. Especially last year as I was heavily pregnant and on daily hospital trips, when I would be in for 2-3 hours a day! But, this year, it's Niamh's first Christmas and I am so excited. She's almost one and will have an understanding (all be it a vague one) about whats going on. She appears to already be curious at what this present idea is all about!

It's also my mums birthday tomorrow, and because of my sisters shifts at work (I think thats the reason anyways) we can't go out for a meal like we normally do so we are having my mum and dad, Chris's mum and dad, my sister and her boyfriend and (briefly) my aunt and uncle, round for a mini birthday party. We have been and bought special food and drink, (and other things - in case she's reading this) so that we can make it really nice for her. It is her first birthday and Christmas since her dad passed away in feb and I want to make it as nice as possible for her. Niamh even has a pretty dress to wear and is allowed to stay up late!

Niamh is good, she will be one on Jan 10th and has been walking around since about 10 1/2 months (sob!). She has decided running is a much better use of her time recently and is charging about all over the place (usually round in circles), this isn't tiring her out any more than usual though!!

I will write again soon and let you all know how Niamh's first Christmas went :)