Back to basics

Been having some weird symptoms the past few days. I have a lot of muscle and joint pain, always have. But for some reason the past couple of days I swear my BONES are hurting, my shins and the bones in my upper and lower arms. Maybe it's not my actual bones, but thats what it feels like, so hey, if anyone knows what the hell this is then leave me a comment! Thank you!

Had to do my injection today, lucky for me it's only once a month as it's not the most comfortable of injections. That sounds funny, the prospect of a comfortable injection. I self medicate vitamin B12 once a month, it was weekly at one point. It does really make a difference though. I don't have a B12 defiancy of any kind it was just recommended by Proffesser Findly when I first got ill. I have been on them ever since, bar when I was pregnant.

Yesterday's entry has made me decide to write more about the affects of this condition on me, my daughter and my family in general. This is, afterall what I created this blog for. The reason I haven't been discussing it as much as maybe I should, is simple really. Sometimes I just find it too hard. But I made this diary to raise awaerness and to show people both sides of having this illness. The good side and the bad side. The days when I need all my mobility equipment, and every adaptation to my home, just to do the simplist of things, the days where I can't leave the house, or my bed. To the days where I can go out with my husband and my daughter and shop like I normal person. Well, mostly.

I recently bought a lockable cabinet to store my medications in, since Niamh has been able to walk I have needed it and with my inability to afford one my dad bought it for me as soon as the January sales were on. I would like something stylish ideally, that is big enough to hold everything. But that is not possible on a budget! So what I have is a filing cabinet, but it's nice, it's black (as is the rest of my bedroom furniture), it holds EVERYTHING including my sharps box and it has two keys (very important as I forget everything, or loose everything). I'll post a picture on here, this is my small two drawer filing cabinet (small in the way of, it only has two drawers not four) with most, but not all of my medication in it (so you know as I need ideas). If anyone knows of a stylish (ish) black lockable cabinet that would be able to hold all this (and a little bit more) that I could save up for please let me know by leaving a comment on here of facebook or twitter (@Crapgoth).

I will write more tomorrow, but until then, here are mine and Niamh's 366 pictures from today:

And Niamh, in her little dress and hat:

Night all.

Falling through the cracks

I am that person. The one that slips through all the cracks. The one that no one can help because of the stupid rules. I don't meet the criteria for anything, and I'm just supposed to survive.

Here's the outline. I'm too ill to work. Simple. Dr won't let me, and unless my health improves significantly this is likely to be the case for all of my life. Maybe in the future if the government realise that instead of trying to fit the disabled person around the job, but instead adapts the job to fit the disabled person, maybe then there would be a chance. I would love to do a job from home, maybe something based on writing, but it would have to be flexible (some days I can't get out of bed), I'd have to have the right equipment (some days I can't use a computer) not to mention I also have a child! I would love to do a documentary to raise awareness of M.E (but would rather not star in it!). But these things are just not possible unless the governments puts provisions in place. Don't get me wrong, it is easier now than say 10/20 years ago for someone with a disability to find work. But it still remains practically impossible for someone with a varying illness, or an invisible illness to find a job or accepting employers. I mean, seriously, who wants to hire someone that has to be honest in the interview and say that they would probably require an extensive time off sick? I know I wouldn't.

Because of this inability to work, I can't get job seekers allowance, or income support. The job centre have said that I simply can't have it if I can't look for work. Ah huh! I hear you all say, ESA! Well no. My husband does work, as my dad is retired and I have a lot of family support, and he works full time. But he only earns £13,000 a year before tax. Our rent is £695 and that doesn't include that fact we have to pay bills, get food, o yeah and once again we have a child! If you want to claim ESA, you can't have a partner who works full time, they have to work 24 hours or less, regardless of what they earn. So yeah, can't get that either. This leaves me in the situation where I can't work, so can't claim the benefits meant to help those looking for work, but I can't claim the benefit meant to be there to support those who can't work. So what do I do? Not eat? Not have electric or heating? The answer, for me at least, is that I have parents that can help me. But that won't last forever and others aren't as lucky.

When Niamh was born we became entitled to working families tax credits, child tax credits and child benefit. These, with the exception of child benefit, are meant to top up what you already earn. Well. I suppose it does do that, but we barely earn enough to live. With child benefit being capped, the child tax credits are used to feed and clothe Niamh, none of it whatsoever is used for anyone other than her. The working tax credits are very minimal and we use them to eat. We do receive housing benefit and council tax benefit, but a minimal amount, nothing near what our rent and council tax actually is.

I did get DLA, but that is now being re-assessed and I'm completely frightened about the prospect of loosing it. It is literally the only income I have. When they say the cost of living is approximately 25% higher for disabled people. They're not wrong. If I can't have someone take me to an appointment, I can't get public transport alone because I can't push my wheelchair whilst holding on to Niamh. Not to mention that pushing a self propelled wheelchair is exhausting! So I need a taxi, an expense as it is, but when you add that it has to be a specially adapted taxi, the fare then tends to increase. I have had normal taxis before that have refused to take me, even though I can transfer from the wheelchair, and don't have to be in it all that time. They have even refused when Chris has been with me to fold the wheelchair up and place it in the boot. They don't need a special licence for me, but the company policy is that wheelchair users can only go in specially adapted cabs, of which there are one, maybe two. Less available, and more expensive, brilliant!

Then there's food. Well, my digestive system often decides it hates me, and with chemical sensitivities and food allergies, eating became more expensive. I HAVE to eat organic otherwise I seriously suffer for it. Most of the time obviously can't afford to do this so I just have to suffer nausea and stomach cramps.

Then, theres medication. I have an awful lot of prescription medication. I used to be on pre-pay because it worked out cheaper. But you still have to have the money when it comes up for renewal. Then I had maternity excemption, which ran out a couple of weeks ago when Niamh turned one. Lucky for us though being in child tax credits and working tax credits put us in the "too poor to afford prescriptions" bracket. Otherwise there is NO way I would be able to afford the medication I'm on that helps me SO much. Then theres the vitamins that I'm on that I can't get on prescription. I am on high doses of manyy vitamins, (Co-enzyme Q10, Vitamin C, Vitamin D, Calcium and Evening Primrose Oil) which are expensive. I also depend on melatonin to sleep and I have to import this as you can't buy it in the chemist or get it on an adult prescription. I can't even add up what this cost me a month.

In the past I have had to buy equipment to improve my life as the wait for it has been so long. Crutches and my wheelchair to name a couple. This means that my wheelchair probably isn't as effective as one prescribed and made for me, but I didn't want to be housebound for another year!

Anyway. That's my story. Now you can see why I am SO scared of not being eligible for the DLA anymore. It is quite literally all I have. We don't have a disposable income. We put all our money into rent, food, bills, Niamh, and things relating to my disability. There is nothing left. Sometimes having enough in the first place is practically impossible!

The sad thing is, I'm not the only one. There are many disabled people out there struggling to live. There are many others who aren't disabled too. SO many people fall through the cracks because they have a disability that varies. They have a partner. They work too many hours for too little pay. They aren't old enough, regardless of their situation (did you know that you are entitled to working families tax credits, even without children, as long as the main wage earner is over 25, NO one could explain to me or Chris why there was this age limit). I haven't even listed a small percentage of problems faced.

I was actually informed (by nodding her head when the question was asked) by someone at the job centre that we (as a couple, even before we had Niamh) would be better off if Chris simply gave up work. This would allow me to claim ESA, Chris to claim careers allowance (instead of my care needs being split between him and my family and therefore no one claiming anything). My ability to claim ESA would result in our full rent and council tax being paid for us. Plus the actual ESA as extra income. Chris could even work up to the standard 24 hours a week, and all this would happen. So... why not? Because we have REALLY strong morals (possibly stupidly at this point). I was brought up, that you work to put bread on the table unless you are physically incapable of doing so, and Chris can. Then if you can't you use your savings, and only then do you ask for help, and when you ask for that help your family should help you too. I have worked myself into a wheelchair, I have used my savings and I have finally asked for help, and my family have offered this financial support as well as physical support in caring for me. All these things stop us making that hard decision for Chris to leave work, or reduce his hours. A decision that is looking more and more likely to occur, despite our best and ongoing efforts!

I am completely in support of welfare reform that streamlines the system, and makes everything less confusing and more accessible for those in NEED of it. This may stop people like me from falling through the cracks. It just needs to be well thought out, and in my opinion this has occurred too fast to be thought out to the extent it needs to be. Just saying!

Anyway enough is enough. It has taken me all day to write this as it has not been a good health day, but was hoping in writing it it might get some of it out of my head and enable me to sleep better tonight.

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

And Niamh, having snuggles with auntie in her PJ's (PJ day and lots of family support today)

Night all.

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!