Thursday 23 February 2012

What's worse? Mental or physical?

Throughout my time with M.E I have almost had every symptom in the book at different points. I was sitting back today and trying to work out which type is worse, the physical or the mental and, if I had a choice which one I would have.

I obviously hate all of them. Being in pain and feeling like crap sucks royally. I think that myself, as with everyone else, I have symptoms that I am better at dealing with than others. I hate being in pain, but to some extent at least I can deal with it or get angry with it, if not I have pain meds to help. The light and sound sensitivity, I can wear eye masks, sunglasses or ear plugs, which makes it all more manageable. The nausea I have tablets for and the exceptionally poor temperature control can be remedied with blankets or fans. The muscle weakness and inability to walk far, I have equipment to help, a walking stick, crutches and a wheelchair. My inability to do too much for myself sometimes, I have things to help me there too, for example a bath lift and perch etc.

In almost all aspects of this disease there is help available, be it equipment or medication, except, that is the mental side. I love reading, I really enjoy it and almost always have a book on the go. I like writing too (obviously) and it really helps the depression that I suffer from associated with this disease, it helps me to rant and rave and get it all down on paper. I like to be organised, I like to have a firm idea in my mind of what needs to be done each day and in what order. And, I like to talk, I talk, A LOT, in fact pretty much constently. The confusion, inability and brain fog that come with this illness, are my WORSE symptoms. Not because they are physically worse than any other but because I, personally feel like I have been robbed of something so important. When I'm having a bad mental time I can't focus, I can't concentrate. I can't read (at all) because by the time I have finished one sentence I have already forgotten it, or the words aren't making any sense or refusing to stay still and running all about the page! I can't write because, even if did, no one would be able to understand it (including me), the only think I can liken that to is trying to write when you are completely wasted, see how much sense that makes the next day! I can't remember what someone has just said to me and have to write everything down, I then often loose this piece of paper or note pad I wrote it down on. Any sense of organisation goes straight out of the window. People can't explain things to me, or have a conversation that makes any sense, I can't seem to remember words that I have known for years, or what I am trying to say comes out backwards or some other demented way round. I spend a lot of my time when I am like this pointing to random objects/people screaming "thingy" until someone tell me what said object is.

I'm not saying that I like being in pain, or not being able to walk far, or not being able to do everything a normal person can do, but I can cope with it better than went I am having cognitive problems. I'm sure it might not be a problem for someone that does not enjoy reading/writing/talking quite as much as I do (and I talk... A LOT!).

I would be interested to see what other sufferers think is worse? Leave me a message on here or on facebook/twitter and let me know how you feel? What symptoms do you find the hardest to deal with?

That's it for now folks, here are mine and Niamh's 366 photo's from today:


And Niamh, who wasn't climbing again.... honest mum!


Night Folks!

Wednesday 22 February 2012

Does it ever make you feel old?

As dad has been round for the past few days looking after both me and Niamh after Chris had to go back to work we have spent a lot of time watching Niamh since she felt a bit better and has been back to her normal self. The other day she was getting up off the floor and did it the same way as me, dad pointedly said, "that's how I get up". Great, I thought, me too. He then went on about how it was because he was "getting old" which of course made me think, "joy, I'm getting old about 40ish years before my time" (when you factor in the age difference and how long I've had M.E and fibro).

Since I've been ill with these I've often thought of myself as old before my time. When I was 21 and began using a walking stick, then crutches, then a wheelchair and even hired motor scooters on multiple occasions, it was kind of like being 21 going on 90 something. When I started loosing my memory, forgetting words and who people were I felt like I had dementia. When my light sensitivity started I felt like an elderly person at the old peoples home I used to work at, shut up in a stuffy room day in and day out. When my hearing started going a bit weird and my mind began taking far too long to work out what people said that I missed the next parts of the conversation (kind of like when you are in school learning French and someone says something, you have to translate it in your head before you understand it) and I was having to constantly say "pardon" I felt even older.

I'm 27 and in my head I don't feel old, in fact in my own head I feel like I haven't aged since I was a teenager, all be it I am more responsible but I still think of myself as otherwise the same way. It is only my body that makes me think I am old before my time. The joint and muscle pain, the inability to walk far, the way I have to move, the way I cannot get up or down off anything without help or a series of well rehearsed moves (or occasionally a sling shot) doesn't help. The aids I have around the house, a bath lift, a kettle tipper, a bed guard, my sofa raised and a perch (to name but a few) in my head as a child/teenager, these were things that old people had. O and medication, that's another thing. Dad was saying how he felt went he was told he would need to be on medication for the rest of his life due to high blood pressure, something that never occurred to me. I can't really remember what it is like not to be as have had asthma since age 6 so have always had to do something everyday, but I am now on handfuls of tablets and injections. I have needles, syringes, a sharps bin and a collection of tablets so big they have to be stored in a filing cabinet (seriously). Once again, in my child brain, this amount of medication was something re-severed for old age (it never occurred to me as a child, that sick and disabled people need this amount too).  Does this illness make anyone else feel as old as it makes me?

Anyway, on a lighter note, here are mine and Niamh's 366 photos for today, me:


And Niamh, after putting a silly bow on her head (I of course had to adjust it a little bit)


Night folks!

Monday 20 February 2012

Getting better.

Sorry about the lack of blog posts but it's been a hard week. Niamh is still ill but slowly getting better, she is finally eating again although it is more or less just rice and dry toast for now at least. It's been hard seeing her like this and having to rely a lot on my family to help me out when Chris has been at work. She is so good normally and so happy to entertain herself recently she has been so upset so often. She has been crying and basically screaming and I have been unable to calm her quite often. I suppose this is the first time that she has been ill and realised that she is unwell and wants me to make it stop. But I cannot and that hurts me. If she wanted cuddles all the time that would be fine, I could do that, but nothing was calming her. Nothing at all.

This made me worry and obviously stressed me out and as most people who will read this know, stress or anxiety with M.E is a bad plan! It has made me exhausted clearly, and increased my pain levels meaning I have to be more drugged up than I'd like all the time. Dad has had to be round all day everyday that Chris has been at work. Chris has had to take two days off and come home early once, which although helpful does add to my worry. I know that they cannot fire him due to absences incurred through looking after me, as with the disabilities I am classed as a dependant and it therefore goes down as domestic leave. But I do think that it can be held against him in store, that it might hinder his chances of a promotion and maybe cause him to have a verbal or written warning, which in itself would decrease his chances of an in-store promotion. Meaning that as long as I am ill we will never get out of this rut that we are in financially.

Maybe I think too much, maybe I just need to sit back and focus on the the now and get through day by day. I have Niamh, and Chris, my own little family and I am really truly thankful. But I do worry about our future and how we will get by. But I suppose, in the current climate, everyone must. I am lucky to live where I do, in the time that I do. What I have is more than enough, it makes me so happy but I can't help but dream of more. Who doesn't right?

Here are mine and Niamh's 366 photo's from today!


And Niamh, looking (and clearly feeling) a lot better, when dad took us out for a coffee in Starbucks (well I had a coffee, Niamh had a bread stick!)


Night folks!

Friday 17 February 2012

Still suffering.

Still have this ears, nose and throat thing that Niamh gave me. Chris has already shaken it off, lucky man! I hate having something else on top of the normal. I think I have gotten used to feel crappy (normal crappy, not like this) and can do day-to-day bits with the help of some equipment and resting when Niamh naps. Having something else on top of it basically makes me useless.

Chris had to go back to work today after having to have 2 days off work to look after me and Niamh. He started at 7 this morning and it wasn't too bad. Niamh had a major case of the grumps but actually ate her breakfast for the first time in days and went down for her nap easily. I just collapsed on the sofa. I have my dad coming round as soon as he's done helping my mum with something for the rest of the day to help me, until Chris gets in. I just feel useless and horrid. It doesn't help that Niamh, who usually enjoys playing so independently, doesn't know what she wants. One minute she's happy playing, then she wants me to cuddle her, then she doesn't. I just can't keep up.

Chris thinks that I do too much. I try very hard to be the best mum possible, even with my conditions, and I still continue to try my hardest even when I have something else on top of my norm. He's probably right, but other "normal" mums have to just get on with it when they are unwell, why can't I? I KNOW I shouldn't for fear of another relapse but I FEEL like I should. I really do. It makes me think that I am letting both Niamh and Chris down if I don't. If I can't play with her in the usual ways, if the flat isn't as tidy as I would like. I feel like I have failed.

I suppose this comes from my work ethic, which is really built into my character. I am an all or nothing type of person. If I can do anything however big or small I put my all into it and do my absolute best. Because I can't work at the moment I take the whole house-wife thing quite seriously. Yes I can only really cook using the slow cooker (seriously brilliant energy saving device) but I like to make sure the house is as clean and tidy as possible and that I get a good amount of play time with Niamh everyday.

In order to help me do all this myself and Niamh have a very rigid routine, which my friends don't always understand. Yes, children need a routine, but most of the time that can be flexible. But M.E patients, M.E patients need a rigid routine, that is the same (where possible) day in and day out. This is ours. Chris gets up with Niamh at 5, then wakes me at 7.30 before he goes to work (unless he starts earlier or later). I get up and do Niamh's breakfast then she goes down for a nap about 8 and I have a rest/sleep on the sofa until she wakes up (usually between 9.15-9.30).  Niamh has some playtime and I rest on the sofa and go and lay on the floor and play with her. We have Cbeebies on and I talk to her about what is happening in each of the programs.  If I am up to it, this is the time we will try and get out for a while. She has a bottle at 12, lunch at 12.30 and goes down for her afternoon nap at 1. I go back to bed until she wakes up which is usually between 2.30-3. After 3 tends to be when my family visit, they came and play with Niamh and do the odd thing for me, like help me to clean or hoover for me. My sister often does my food shopping for me, and my parents bring me things that I need when I can't go and get them. Niamh normally has a bottle at 4.30, dinner at 5, bath at 5.30 then quiet time and bed between 6-7. I often go to bed not long after her, it doesn't mean that I have much time to myself, or to relax but caring for Niamh is the most important thing to me!

If I can't even do the little things that I allow myself within the rigid routine I feel awful. I was once SO independent. I didn't like people doing things for me, and I am still that person. I STILL don't like it when people do things that I think I should be doing, it makes me a very bad patient! I am forever being told off by everyone for doing too much and for not asking for help when I clearly need it. But I don't like asking for help and I don't like the guilty feeling I get when people are doing things for me, I don't like putting people out! I have actually had full blown arguments with Chris because I was trying to do too much for him, to help him out. I understand why but that is the complete opposite argument to most couples! O well I don't like to be normal, can you tell?!

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

Niamh, despite pooping for Britain and throwing up still wants to explore her bedroom!


And me, ill, went back to bed as soon as Chris got in, having problem holding my head up for more than 5 minutes.



Night folks!

Wednesday 15 February 2012

The biggest reason I hate M.E

Sorry I haven't posted in a couple of days but it's been a nasty couple of days. Niamh has been ill with a sickness bug and a virus affecting her ears, nose and throat. She's barely slept for the past two nights and has been in our room both nights (in our bed for quite a large amount of time). Meaning that I've not been feeling well either well, completely exhausted as a matter of fact. But that is not the reason for the title of the post.

After Niamh hadn't been sick in a good 6 hours on Monday night she puked bile, after calling NHS direct they decided that it was a cause for concern and that she should normally be seen at a hospital. Because she was handling it so well (quite alert and active) they decided it would be ok to be taken (swiftly granted) to an Emergency GP saying if the GP thought she needed to go into hospital he would send her on from there. The problem was this was 11pm and I took my overnight meds at 7pm and was almost completely unable to stand let alone go anywhere. That and, neither myself or Chris can drive. So an fast call to my parents and 10 minutes later Niamh's uncle was at our door to take Niamh and Chris to the doctor. But I couldn't go. I have never hated M.E more than knowing that Niamh needed me and being unable to be with her. I was already having enough problems but the added worry and stress caused me to have spasms and shake from head to toe. I was in floods of tears and really needed to be with her. I knew it was really for her own good that I wasn't going though. She needs me to be as well as possible to look after her and care for her. It was this reason I didn't go and if it wasn't the case I don't think that anyone would have been able to stop me. I was lucky that I have a got circle of social networking M.E friends to remind me of this otherwise I think I would have gone to bits.

That being said I don't know how I am going to deal with everything that medically speaking the future holds for Niamh. If she ever has to go to A&E or if she has to have an operation or get admitted into hospital. I know I wouldn't be able to be the one that goes in with her, I have a hard enough time from a deterioration stand point when I have to go in (which thankfully hasn't happened since I was pregnant). Let alone with the added stress or attempting to sleep in a fold down, chair/bed thing. I will hate not being with her, she always wants me to be with her. But I guess I'll get over that hurdle when/if we come to it.

My other big worry is my inability to look after her solo when's she's ill especially after such disturbed nights. Therefore the added pressure of Chris having to have a couple of days off to help out. My family have been fantastic and rallied round doing washing and cleaning so Chris can focus on looking after Niamh and me. I think these worries are always present in the lives of someone suffering from this disease. I just tend and try to push them to the back of my mind most of the time but sometimes of course I am forced to confront it. Then I just use the time to figure out a plan (in this case, Chris will go with her and I will stay home and cry) wallow in it a bit, get upset, write about it and then get on again. Because if I was to think about everything I can't do with/for Niamh it would put a serious dent in my abilities to do things with her. There is a LOT I can do with her and I need to both focus on it and enjoy it!

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

Niamh asleep in her cot (finally moved back into her own room for her afternoon nap) and hiding from the world!


And mine, me and Niamh having asleep snuggles together.


Night folks!

Sunday 12 February 2012

Dazed and confused!

Sorry about no entry yesterday. Chris was on a late and come the evening I was really struggling. I put Niamh to bed and then felt really ill. Dizzy and just generally ick, I knew there was a high possibility that I could pass out. Que Niamh waking up! So ending up laying in bed with her and texting Chris asking him to come home early. To his credit he was home within about 10 minutes! He took over with Niamh and I went to bed. Still feel worse for wear today but don't think I'm going to pass out any more. Chris is day off today so I'm going to do my best to just rest all day and let Chris do the work.

Had an interesting few days recently, Friday my body didn't want to work normally (my normal not the rest of the worlds normal) and yesterday my brain had basically given up! I was stupid, really stupid, all day. Talk about brain fog! I couldn't string a sentence together very well, kept forgetting what words I wanted to use and completely forgetting the subject of a conversation mid-sentence (didn't help that my mum couldn't remember what we were talking about either). I walked into cupboard doors that I had just opened (verging on concussing myself) and threw most of a pack of frozen peas all over my kitchen. Not that those two acts of stupidity can be blamed on the brain fog but it seriously was not my day.

To top all this off Niamh has decided that she wants to climb, everything. She started off a few weeks ago by getting into her smaller toy box, then her bigger toy box, then she started climbing into toys and all over her little chair! This morning Chris caught her climbing into one toy box and onto the lid of the other (closed) one. Her little table is right next to that so when she works out she can climb onto it then she (sadly) has access to everything on my window sill. Time to baby proof again, ergh! She really is a little monkey! Problem is I can't get up fast enough to catch her if she looks like she's going to fall. So now I have to try and teach a 1 year old that she can't climb on things, when really it's just a part of her learning. I was like it apparently. She'd make a great gymnast.

I find it harder and easier now she's walking (and climbing) so confidently. Firstly I can't keep up with her, if I leave a stair gate open she makes a beeline (a very quick one) to the unexplored territory. Now, nothing in my flat is marjorly dangerous to her but we haven't baby proofed the whole place, just the living room. It's  difficult because of the size of the flat, it's so small that we would have to attach things to the ceiling in order to sufficiently baby proof the whole place! She's alright to go and explore other rooms as long as someone is with her, but as I said I often can't move fast enough to be the one with her! When she's climbing on stuff my heart is in my throat. Her climbing in and out of her toys and toy boxes is fine. She's become quite skilled at it now and there the chance of her hurting herself is pretty slim it's just when she climbs on other things. I'm waiting for her to climb onto the sofa, I think she would have done but because it's raised (OT) it's still a little high for her. We have since re-baby proofed the living room so she can't climb on anything and hurt herself. the chair isn't in it anymore unless it's being used (to sit on) and the toy boxes live in the middle of the room unless she's asleep, meaning she can't use them to climb onto (or into) anything else. I feel much better about the whole situation!

Secondly, it's easier because most of the time it means I have to move at lot less. She can get the things she wants and come to me when she wants a cuddle. I can lay on the floor with her and we play together. She's a very confident child who likes to entertain herself, sometimes she even gets cross if I try and play with her and she doesn't want me to. She gets very wrapped up in whatever it is she's doing and usually hates being interrupted. I really wish I could be in her head sometimes, I sit and watch her and wonder what she believes she's doing. It is very. very cute.

She's started trying to talk but at the moment it is mostly a mix of sounds, although she is very determined and frustrated that she can't get it right. She can say hello, mummy, daddy and bye although she seems to use hello the most, which is quite often. She spends a lot of time saying something that sounds a lot like "I like cheese" although I haven't worked out what it's actually meant to be yet. I highly doubt she is showing an early love of dairy.

That's about it for today. I thought I'd update you on Niamh's little funny developments. Anyway. here are mine and Niamh's 366 photo's for today.

Me, on my perch having just finished the washing up! YAY! To being productive!


And Niamh, bringing me one of my crutches (she did almost knock me out with it a few seconds after the picture was taken!). 


Night all!


Friday 10 February 2012

Voices from the shadows

Sorry for not posting yesterday but I wanted to use my energy elsewhere. My copy of "Voices from the shadows" arrived on Monday and I had been waiting until Thursday evening to watch it. The reason is simple really, Niamh would be in bed and Chris would be at work and I would be able to get as emotional as I wanted in peace and quiet.

I thought it was brilliant. Very informative, very emotive and very true. It highlights the condition, how many systems within the body it affects and shows exactly how serious it can become and that it can kill (a little known fact outside the M.E community). It also highlights the neglect that many M.E patients suffer (mainly at the hands of professionals) and it is so true. I think everyone who has M.E has experienced this at some point. I personally have, I wasn't diagnosed for two years due to my registered GP not believe in it's exsistance. In that time I went from mildly affected to severely affected. Working and having a social life to bed bound in a blacked out room for 18 months.

I did find it very hard to watch at points and it did bring back some difficult memories from my time as a severely affected sufferer. I was never medicated intravenously (well not solely due to M.E) or tube fed and thankfully my husband and my father kept me out of hospital. So I can't imagine the extra stress and strain that being hospitalised would cause.

I think it is a must. I think everyone who knows someone with M.E needs to watch it, to be honest I think everyone should watch it. It also explains the issues with the classification and how M.E is NOT CFS and why the some members of the medical community insist on treating it as a pysocological disease. It shows the dangers of graded exercise therapy and goes into the issues with the NICE guidelines. I will be buying one for my MP and possibly that idiotic GP that let me get so ill.

At the end of the day if you have M.E, know someone with M.E or have heard of the disease or DVD and you have been uncertain whether or not you should buy a copy you defiantly SHOULD.It's only £6-7. Even if you personally never watch it, lend it to your family and friends, send it to your MP and your GP help to raise awareness of a well known but little understood disease. Help show the world how we suffer. How there is no known cause or treatment and often those treatments suggested by professionals do more harm than good. Help to show the world how seriously ill people are being neglected everyday and their families are forced into caring for them without any outside help or support. Help to show the world that it is NOT "in our heads" and no amount of counselling or CBT will fix us. Help people who can to help us. Please.

Anyway here are mine and Niamh's 366 pictures from today:


And Niamh, on a rocking toy thingy at toddler group, she also got in a toy box there too, and taught another baby how to do it (oops!).


As promised here are a couple of bits to do with "Voices from the shadows" I really do think it is so, so important. This is the trailer:



and you can be referred directly to the webshop from which you can buy the DVD by clicking here. Thank you for reading and thank you for considering buying this DVD.

Bye for now folks!

Wednesday 8 February 2012

Disturbed nights, snow and bed sharing!

Sorry about all the ranting and politics recently, these are issues that are obviously really important to me, so I got cross and ranted. A lot. I have now set up another blog especially for me to rant in, if you're interested this is it http://agirlcalledjexxy.blogspot.com/ . There may still be an occasional rant about M.E or parenting related issues on this blog. But don't worry this is a more light hearted entry.

I haven't had a whole hell of a lot to talk about recently, because of the snow and the cold I've barely left the flat in the past couple of weeks. I thought I would be getting a bad dose of cabin fever about now but I've actually been ok. I know that I can't go out in this alone, especially not with Niamh, snow is bad enough but is seriously just ice now. The pavements and roads are one massive ice rink. Chris took me out in the wheelchair yesterday and we used the seat belt on it for the first time. We had to stretch it a lot so it would fit over Niamh as well, but because of how bumpy it was I didn't want her falling off!

I've been having a bit of a problem with self image lately. After I had Niamh I was quite overweight, I dieted through slimming world and lost about 3 stone. Since the abscess, C-Diff and all the infections I've had continuously since October I've put on about 1/2 a stone, it puts me at about the weight I was before I got pregnant with Niamh, but I don't like it. I actually feel seriously disappointed in myself. I'm clearly not an active person, but since October I have been going from bed to sofa, to sofa to bed and that's about it, laying on the floor sometimes to play with Niamh. I suppose that's the reason really, quite obviously in fact, eating higher calorie food because I can't really make my own and then doing less. I just don't think that I can be happy at this weight. Stupid really because my health is more important that how I look. It should always be. I'm just a bit fed up I suppose. Sigh.

Niamh has been having disturbed nights recently, crying in her sleep and ended up in bed with us a lot because she is clearly scared of something. To be honest, putting her in bed with us is for selfish reasons, when she cries and wakes up scared she goes back to sleep with a bit of comfort, if she's in bed with us it's easier to provide that comfort whilst getting the max amount of sleep! She's been sleeping more during the day as well, waking at 10-10.30 from her morning nap (instead of 9.30) and wanting to go back to sleep by 1. Bless her. She may have a bit of teething pain though and seems to have come out in a slight cold today so could be a whole manner of things. She seems ok when she's awake though, a bit grumpy as she starts to get tired. So I'm not worried about her, just feel sorry for her. We are mostly having PJ days at the moment, as she's obviously not quite right and my health is suffering due to her disturbed nights. It will work out in the end though,  I'm being careful. Eating right, resting loads, trying to sleep when she does. I couldn't be doing more to try and keep my health on track than I am. So for once, I feel good about that.

Having said all that I am going to have a chilled out evening and an early night!

Here are mine and Niamh's 366 photos from today. Not a good one of me, but as I said I haven't been having the best of days today, I have added some effects to save you all from the true horror!


And Niamh, sitting on the sofa like a big girl!


Night folks!

Tuesday 7 February 2012

Abuse against the disabled.

Right, first things first. There ARE people out there who aren't disabled but are somehow managing to claim disability benefits, there ARE people out there who's health has improved and they haven't notified the relevant people. This is fraud, and this is wrong. No one is claiming that we are all saints. But what the government and the media alike, have done recently is to tar all disabled people with this brush. This has led to an increase in abuse of disabled people, some even being shouted out in the street when out and about. With all the stigma attached to being disabled, to the illnesses with which we suffer and from claiming benefits, the last thing we need is a torrent of abuse from the general public.

I recently read an article in the Daily Mail (don't normally read this paper by the way, due to they're ability to publish offensive drivel without a second thought) entitled "If public opinion is turning against the disabled, disability charities have only themselves to blame" by a certain Steve Doughty. I was linked to this article through twitter, here is the full article if you wish to read it for yourselves http://www.dailymail.co.uk/debate/article-2097157/If-public-opinion-turning-disabled-disability-charities-blame.html#ixzz1lbtD3bDs. He states that the welfare system is massively abused and this began as early as the 1980's. He may have a point, that the decline of heavy industry left a large amount of middle aged men unemployed and needing to claim benefits, that is probably true. But why does he believe that due to this unemployment they have a need to claim disability benefits?

Unfortunately that is what the media seems to be doing at the moment, claiming that everyone and they're dog are on disability benefits. There are people in all walks of life claiming a wide range of benefits and with EVERY ONE of these benefits people are claiming them fraudulently. Why on earth is everyone only focusing on disability. The entire benefits system will be reformed by this bill, not just those claimed due to illness and infirmity!

He goes on to say that there is no "shortage of volunteers who prefer not to work and find it convinent to live on sickness benefits" he's right, there probably isn't. But why would you? Seriously? The forms are ridiculous, you are tested in every way possible to be sure that you are truly sick and need help. How on earth people who aren't ill manage to claim these benefits, I will never know! I was bed bound for 18 months and couldn't claim them! There are LOADS of disabled people out there, who are suffering and struggling to get by, appealing time after time and not receiving the benefits they so desperately need. There is no doubt within the disabled community that those fraudulently receive benefits should be brought to justice, but from every area not just sickness benefits.

He also uses the motability scheme as an incentive for those who are not sick to claim this benefit. Yes, it probably would be an incentive. But once again, you must have higher rate DLA in order to be accepted. This will mean you basically can't walk further than a few yards, now, how on earth people who aren't disabled manage to convince people of  this I will never know. In my case, I probably would be entitled to a car through the motability scheme, but we couldn't afford the up keep of it. We use my DLA to buy food (dietary needs require me to eat organic and have little or no processed food, which is expensive), my vitamins, the ones I can't receive on prescription and anything left is put towards funds for me to buy equipment to help me round the house, or to go towards repairing my wheelchair if needed. We don't have anything left. We use it for what it is intended, and nothing else.

He once again mentions blue badges as an incentive to "become disabled" seriously? Once again, it took me over 5 years to be entitled to one of these despite being in a wheelchair because my disease didn't fit into any box. On the occasion where I can walk a very short distance (for example to use a store wheelchair) I always get looks. I'm young, I have a child, I don't look ill and I KNOW everyone is thinking "shes not disabled", then I get in a store wheelchair and put Niamh on my lap and the looks of pity start instead. He says that people believe that blue badge are widely exploited by those who aren't entitled to them. This is, once again probably true. My dad has mine in his car most of the time, and I know it would be easy for him to simply use it, but he doesn't, he refuses to unless I am with him, which is something I whole heartedly agree with. But it would be easy and I can only make the assumption that others don't have the same morals as my dad.

He also talks about the government's plans to cut the number of people wrongly claiming these benefits by introducing more exacting fitness tests, saying the those campaigning for disability rights are saying this is, in fact, making life even harder for disabled people. To a point, this is a good idea, it would certainly reduce the amount of non-disabled people claiming, but at the moment, with the tests that are currently in place, I could name personally at least a dozen truly disabled friends who cannot get DLA, when they obviously need it! You make these tests stricter and even more needy people will go without. The media refuses to attempt to do their research or see it from our point of view. But isn't that almost always the case?

Yes, the amount of abuse the disabled receive has increased, that is almost certain, but I disagree that charities are to blame. They are not naive, they are not simply believing that every benefit claimant is legit, they are merely sticking up for those without a voice or those who are too unwell to find theirs.

The people truly responsible for increasing the abuse of an already vulnerable people are the media. The government, yes to an extent, with the welfare reform bill BUT this reforms all welfare not simply that of the disabled population. We have fought back, because for those of us truly disabled we have already had to fight for every penny and all of it is used for our needs, equipment and care alike. Simply because we are sick does not make us deserving but the welfare system itself was introduced to help care for those who for whatever reason could not work to take care of themselves. Many of us have worked for years. Many of us don't even want to be on benefits. Often those with my disease are those who were once the most driven, who worked the hardest and helped the most. But all of this is conveniently forgotten by the media, in fact personally, in any mainstream tabloid I haven't even seen it mentioned. They simply stereotype all disabled as "fakers" in it for the money (yeah because there's loads of that!) or the blue badges, and even in one article I have read, the toilets (anyone who has ever used a disabled toilet will probably tell you this is not a joy).

My personal opinion of Mr Doughty's article is that he needs to look in the mirror, there and in that office, and  in the offices of other newspapers across the country are the real culprits, they are the ones responsible for the increase in abuse against some of society's most vulnerable people.

On a lighter note, managed to get out for a while today. Chris is off today, so he took me and Niamh to tesco's to get some food etc, and my wheelchair survived the snow! We had a busy flat at lunch time, with my parents, Chris's mum and nan round and my sister over after Niamh's afternoon nap! All very exhausting! Angela is moving tomorrow, so she will be right round the corner from my parents and closer to me! YAY!

Here are mine and Niamh's 366 pictures for today. Mine, me and Niamh in Tesco!


And Niamh, asleep with her bum in the air:


Night folks!

Monday 6 February 2012

Faker?

I read an article yesterday entitled "I never qualified for disability benefit, yet I'm still called a faker". This rang so true to me and my condition, that I just had to write about it. Here is the link to the full article for those who want a read, it really is quite interesting! http://www.guardian.co.uk/society/2012/feb/05/holly-ferrie-case-study?CMP=twt_gu

When I first got ill I was still training to become a midwife. I got infection after infection after infection and was on super strong antibiotics for months and months. I would have days where I physically could not get out of bed followed by day or weeks where I was fit to work. So, thinking I was doing the right thing I would go in when I was well enough and work as hard as I could. I did all my studying and wrote my dissertation from my bed. Everyone, was calling me a faker then, my peers, other midwives at the hospital and even my lecturers. I had no official diagnosis, in fact even my then GP was telling me it was all in my head. I started to believe them and was determined to prove them all wrong, so I worked harder. I did more hours at the hospital to up my clinical hours, I studied harder at home and did more shifts at the pub I worked at, to make more money to save. This didn't of course, have the impact I wanted it too. Everyone with M.E knows that rest is key, the way to make yourself better is not to go and work harder, and work more. So what happened? In an effort to prove that I wasn't faking anything I made myself look more suspicious to them. I burnt myself out and it effectively ended my career.

Because they didn't believe me, and because they didn't diagnose me, I will never be a midwife. I dreamed about being a midwife for a long time, I worked so hard and I loved almost all aspects of the job and that was taken away from me by the attitudes of some people and the social stigma of M.E. Of course, I don't know for sure but maybe, if they had diagnosed me sooner or believed I was ill when I said I was things might have turned out differently. I might have intermitted sooner, and spent a year resting early on in my disease, before it progressed so far. I might not of had to spend 18 months bed bound, I might not still have to use a wheelchair. I might have a useful degree instead of one "unnamed" degree level award. I might be able to run around with my daughter.

It took a further 2 years before someone diagnosed me. Once again down to this "faker" attitude people have towards M.E. I know others have had the same experience, but the one of the GP's at my practice, the one I was registered with in fact, doesn't believe M.E exists. Nor do a few others actually, over the years I have found out which ones and I now refuse to see them. I find this utterly ridiculous that even now that the condition is recognised by WHO and there are NICE guidelines in place to treat it (not good one granted, but that's another entry) some dr's still refuse to believe it is real. In that 2 years I went from active, studying, working 3 jobs to completely bed bound needing help with everything. I lost my dignity and spiraled into depression, knowing how ill I felt, how much pain I was in and finding no one believed me except my family (and they were a great support). The dr's were telling me it was all in my head, and I had started to believe them. I thought I was going mad. I worked through the pain, I worked through the sickness and the exhaustion until I couldn't do it anymore. Until my body wouldn't let me, and I strongly believe I got as ill as I did, and stayed as ill as I am because of these attitudes toward M.E. Held by everyone, in all walks of life, even professionals.

It isn't just within the medical profession that you have believers and non believers in this illness (for goodness sake it sounds like a religion). It carriers with it a social stigma within society. People call it the "joke illness" even some sufferers call it by this name. Sometimes I feel it's easier to pretend I'm  fine instead of explaining whats wrong. Obviously this isn't easy when I'm in the wheelchair. I am seriously fed up with people staring at me and trying to work out whats wrong. Sometimes I don't leave the flat for weeks because it's easier than explaining why I'm wearing sunglasses in the rain. Everywhere I go, I am faced with discrimination in every walk of society and it has to stop. Now.

For some reason this does rub off on me, sometimes I actually feel like a faker, how stupid. I'll sit here on days when I am feeling more well than usual, and I'll wonder if I'm really ok and that I'm just imaging everything. I know this is stupid, and I only have to move again to be reminded of the pain and then I know I am not crazy. This is the problem with conditions that fluctuate you're never really certain of anything. Of what you have, of how you will be one moment to the next let alone one day to the next. Sometimes I wonder if actually I do feel normal occasionally, but then I remember that I have probably just forgotten what feeling well is like. My normal now is just ill, my ill is really ill. Joy.

Filling in benefit forms is a nightmare with M.E/CFS and Fibro. You don't fit into any box and the extent to which someone suffers with the disease, and the symptoms suffered vary so much.  I, like the girl in the article, didn't claim benefits when I first got ill. I lived with my dad, and had saved up some money through working as a domestic in the hospital I was training at and as a bar maid in a local pub. I used my savings, I sold my stuff, I relied on my family, anything so I wouldn't have to claim benefits. It wasn't until my dad got made redundant and myself and Chris moved out that I sought help. I had done everything I could, for as long as I could to stay off them. I had done what society had asked. I had paid taxes and now I needed help. There is such a social stigma to being on benefits, especially any form of disability benefit. Its awful when you tell someone that you have to claim benefits and then why, and that why is M.E (which they don't believe in) and they laugh at you or sneer at you or call you fake. It is so upsetting, they don't know my pain.

I suppose it is too much to ask for people to just believe I am ill because I a say I am. The lady in the Guardian article sums it up nicely, "pain is invisible and hard for people to understand".  Almost every symptom I have is invisible, and often what people can't see they don't believe. Like the girl in the article, I often hate looking good because people assume you are fine. It's difficult really. Sometimes I wish I had a huge sign round my neck that simply said "disabled" but at the same time I like to have the ability to pretend I'm "normal" sometimes. On the plus side there are a few times when I have felt awful and been told I look good and it has cheered me up, I'm a strange person really!

Just because my illness is invisible doesn't mean I am, it doesn't mean my needs are and it doesn't mean my feelings can't get hurt by what you say.

Anyway, here are mine and Niamh's 366 pictures for today.

Me, in a box ( I could sort of stuck in the box and had to be tipped out of it!)


And Niamh, after she had finished climbing mount daddy. 


Night folks!

Sunday 5 February 2012

Snow... now there's a surprise.

Everyone is talking about it, snow. There are very few places in the UK that it missed and Chelmsford wasn't one of them. I have to admit, this time I did kind of want it to snow, it did, Niamh has seen it (and didn't like it) and it can go away now. Problem is looking out of my window at the moment I don't think that is going to happen. The sky looks the ominous grey/white that it does right before it snows, but it's dark here so I could be wrong.

From an M.E/Fibro point of view, at least at my percentage, snow sucks! It was worse for me last time we had heavy snow though as I was heavily pregnant and bed bound so couldn't even go and stand in it, so this time is a plus I suppose! For those who don't have M.E and/or Fibro or who (luckily don't have it too severely) snow presents a few problems for these diseases.

Firstly, there's the cold, I suffer a lot with joint pain and the cold makes it much, much worse. I tend not to go out when it's cold, when it goes below 3 degrees is normally a good limit. This isn't as possible with having Niamh but my family help out a lot so that any trips I make are the bare essentials. Ironically it does actually warm up a bit when it snows, so after the snow has fallen is usually better for me pain wise than before. If I do have to go out, it's loads of layers, bandages on my joints (wrists, elbows, knees and ankles) and heat pads if I have them!

Secondly, I can't walk far, and wheelchairs, well they don't like the snow. They don't work in the snow unless it's only a very small amount (saying that Niamh's buggy wouldn't really work in this snow, maybe her old one but not her stroller). So I basically can't go out with snow this deep, unless someone with a large shovel or a small snow plough goes ahead of me and clears the snow (now that's an idea!). Which, of course is very frustrating and does remind you how little freedom you do actually have, sometimes. I am lucky though, I can walk a very little way, so I can be taken to indoor shopping centres and things where you can hire/borrow wheelchairs. In fact I sometimes insist on it!

Thirdly, that little way I can walk (and I am sure this is also true for walking M.E sufferers) is very much impeded by the snow. Especially deeper snow. I think it has something to do with the resistance the snow puts up, and the extra amount you are required to lift your feet with every step. We took Niamh out in front of the flat early (there is a very small amount of grass and a small wall, much safer than the car park) and just walking a little on there (literally standing outside the communal entrance) tired me out so much I had to go and lay down when we came back in!

Finally, I was never really one for playing in the snow for too long, it always annoyed me how cold it was. But now that I can't I really want to. For example, I sat on my sofa earlier watching a couple from another flat mess around in the car park. He was clearing his van of the snow, she was making a snowman, he was lobbing snowballs at her from across the car park, she was trying (and failing) to get him back. They looked like they were having fun. I wanted to have fun too (insert comical big sad face here). But if I could, I would probably be moaning that I was cold, my hands were wet and I was going to have bruises in the morning. Why do we always want things when we can't have them? Ah, that's life!

Anyway off of the M.E parts about snow, and onto Niamh's first experience with it! As I said previously this was the first time that Niamh has seen snow, firsts are always special. So, course we were dying to take her out in it. I even had a bet on with Chris that she would simply try to eat it! But Chris, (who is a CHILD when it snows) was very good and waited until she woke up from her morning nap (I was convinced that he was going to try and take her out there at 5am when she woke up). We wrestled her into a million layers (vest, babygro, jumper, thick snow suit, hat, gloves, shoes etc) and got our coats and snow boots on (has snowed since I bought them last December, typical) and set off outside, armed with phones and cameras. We stood Niamh in the snow, she stood, tapped the snow, shuffled, cried and then fell over. Not the best of starts. We stayed outside for a few more minutes whilst Chris attempted to persuade her that snow was, in fact, actually rather fun. He couldn't, so we went in. There ends Niamh's snow adventure, as it is clear that for the moment at least she is not a fan, much to Chris's disappointment!

Here are mine and Niamh's 366 photos for today. First me and Niamh in the snow:


And Niamh, her new car seat arrived today in an almighty great big box! So here is she in the box, later on I may have got in it (and got stuck) and we also used it as a cave!


Night all.

Saturday 4 February 2012

My M.E senstive side.

M.E has a lot of symptoms, anyone reading this blog probably has it, has a loved one with it or has an interest in it. These aren't just physical. Now let's get this straight right here, before I start the rest of this entry, I am in NO WAY saying that M.E is a mental disorder because clearly it isn't! But there are symptoms that could, I suppose be described at emotional. These include those like anxiety and depression.

Now I have both of these, I have also suffered from both before I was diagnosed with M.E. I like to think of it as the sensitive side of M.E, not in the emotionally understanding way but in the sensitive subject way. For this entry I have decided to open up about these and how they effect me and how I have learnt to live with and to some extent control them. M.E has a lot of stigma attached to it and so does mental illness, so for some people discussing these sensitive symptoms of M.E can be difficult and embarrassing. Myself included, to some extent, but anyway here goes!

I have had anxiety issues for as long as I can remember. As a child it seemed to be related to being away from home, specifically my parents, although I was still anxious if away from home with them. I used to hate it because I would really look forward to doing something, or going somewhere and then as the day got nearer I would get more and more anxious. It wasn't that I didn't want to go, because I did, just once I was there and my parents were gone I would start having panic attacks. One after another or I would never calm down from the first, until I was back with my parents. I would try to calm down but I really couldn't help it. Eventually I was taken to counselling and it seemed to help a lot. Not long before I finished primary school my parents dropped me at a family friends house, their mum was on a mission, to put up with me no matter what happened, I would stay the night there. And I did. It was a breakthrough. I still have anxious moments when I'm staying away from home, for example on holiday, but once I have done one night I am usually fine.

It would seem that since I got M.E the cause of my anxiety has decided to transfer onto something else. I now have emetophobia, a fear of vomiting. Clearly no one really enjoys it, but feeling sick or having had contact with someone that has a sickness bug makes me panic. Lucky for me, I don't have it too badly, I can look after Niamh when she's ill, with no fear. If someone throws up on TV I'm fine and so on and so forth, it's just when it's me at risk that there is a problem. It is obviously quite unfortunate that nausea is one of my M.E symptoms, sigh. I have anti-emetics on prescription which helps but doesn't always work. I sometimes actually panic myself into being sick which is beyond stupid but hey it's how I roll.

I think the main tips I can give to people dealing with anxiety are these.

  • Know the cause - getting to the root of the problem is completely essential if you want to understand and perhaps being to control your anxiety. You may be able to work it out for yourself or you made need help, ask your family or get your GP to refer you to a qualified counsellor.
  • Distraction - for me distraction is key. If I start to feel anxious, I leave the room I was in when I started to feel that way. My panic attacks tend to happen at night, so I will go into the living room and turn on the light. I will try watching TV, playing a game or reading a book, something that keeps my brain occupied and stops me panicking. When I have the energy and ability I find cleaning is a really good distraction.
  • Deep breathing - I know they say to breathe into a paper bag but apparently now you shouldn't. But I find it really helpful to slow my breathing down. I hyperventilate when I panic so this helps to calm me down. Breath in for 5, hold for 5, out for 5.
  • Talk to someone - tell them you feel anxious, get them to sit with you and help distract you and if you need them to, get them to talk you through some deep breathing. Chris does this for me, but my dad has always be the one that can talk me down every time.
That's about all I can think of. But anxiety is horrible, it is hard to explain and even harder to understand unless you have been there.

Depression is different. I was told I was depressed when I was 18, and was diagnosed at having M.E at 21, my GP has since informed me that she believes I may have had M.E since I was 16 and that the depression was, at that point a misdiagnosis. I think that a lot, if not all M.E patients suffer from depression. Lets be honest, most people would if they had this un-ending list of symptoms, day and night, year in, year out. It gets you down, plain and simple and sometimes it's hard to keep your head up and look for a way out. I know that my depression symptoms vary with my M.E symptoms. The iller I am, the more depressed I feel, simple. There are times that I have thought that it was all to much, that I couldn't handle it anymore and maybe it would be better for everyone if I wasn't around. I'm not going to lie. I had been independent, studying for a degree in a profession I loved, working in a bar and being extremely sociable. Then suddenly I was bed bound, not earning any money of my own, shattered and in pain continuously and relying on Chris and my dad to do everything for me. Who wouldn't get depressed and think that maybe they were in every ones way simply making things more difficult for them.  It was during this time that my dad introduced me to his own form of positive thinking and this really helped me.

During an earlier episode of his life he had undergone CBT therapy. Now I am not saying that CBT is a cure for M.E but with my dad's version he drummed into me certainly helped my depression symptoms. I have learnt, from him, to think a little bit differently about things. I look for the positives in situations much more now, I used to focus purely on the negatives. Now I realise how important looking at these positive aspects of my life are in controlling my emotions and my depression. It still goes up and down with my illness, it still effects me to an extent most of the time. But now I focus on my big positive (clearly now it's Niamh) and it helps.  Another big thing that has helped with this is talking to people, explaining how I feel. Normally this is Chris or my parents, and usually they can point out something I've missed, or help with Niamh or offer support, which is a big weight of my shoulders. Having this support is essential in my opinion.

I hope that me explaining that I have these conditions and how they effect me has helped people to understand them better and to realise that there shouldn't be as much stigma attached to them as there is, in fact they are both quite common place in society. I also hope that some of the tips I have offered will help someone, somewhere, feel just a tiny bit better.

Some good news, and something that has gone a great way towards relieving my anxiety for the moment at least, is that I received my DLA assessment today. It was up for review and is remaining unchanged. The fight against a realistic welfare reform is still massively important, but this is one little worry of my plate for a short time, I can breath a little easier and fight a little harder.

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

Me, ready to go to a quiz with my parents, probably only staying for about half but so glad I'm well enough to go for a while.


And Niamh, the photo I sent to her uncle Karl for his birthday, she's in her (slightly too big) piglet hoddie:


Night folks, going to head to the quiz now.. I hope!

Friday 3 February 2012

Noise, babies and biscuits. O and we're back to Mr Liddle.

I don't have a whole hell of a lot to write about today. Have a stinking headache thus making me both light and sound sensitive, and my concentration is shot. I have been on pain meds all day and had one of those cool strips stuck to my head. Couldn't take anything stronger than co-codamol until Chris got come so was alternating co-codamol and ibuprofen most of the day. Anything stronger makes me wibbly and odd, don't feel comfortable being in charge of Niamh when I'm having medication induced side affects.

That being said I finally managed something I had been hoping to do for a long time. There has always been loads of baby buggies going in and out of the church across the road from me every Friday morning, I always assumed it was some kind of baby and/or toddler group. It is! It's run by the NCT and takes place every Friday morning from 10am until 11.45am but you can come and go as you please. This is brilliant for me as I can take her there when she wakes up from her morning nap (even if it means we arrive after 10am) and then leave when it all gets too much for her or indeed me (as was the case this morning).

I can be very shy and nervous about meeting new people. It's the brain fog I think, I get my words in a muddle a lot or can't find them at all. This is bad enough when it's someone I know or who knows I have M.E and I'm not just nuts. But I can hardly introduce myself "Hi, I'm Jen, that's Niamh (points to child running off) and I have M.E, so if I collapse or can't talk like a normal person then just ignore me and continue with your cuppa. Pleased to meet you. Pass the biscuits." can I? Anyway, it was good, a few people came over and spoke to me and Niamh didn't attack anyone. She did cover herself in paint, which I still can't get completely off. I didn't make a fool of myself conversation wise either.

The only drawer back to the entire experience is the noise. The woman in charge did say it was very manic today, much more so than usual. Niamh seemed happy with it, she did some painting, played with some toys and some other children, almost fell on a baby (that bit not so positive). I didn't do so well with handling the noise, I must remember next week to take ear plugs (best wear my hair down otherwise I may end up being forced to do the disease explanation conversation sooner than expected). I already had a headache and it really didn't help. But all in all a positive experience, and there was tea and biscuits, yum! Will be aiming at going back next week. Think I will try and take her every week, it's almost M.E perfect, its so close, you can come and go when you please in the 1 hour and 45 minutes that it's on and it doesn't have to be me that takes her, so if I'm too ill she can still go. All of this and it gives her some time with other children that she otherwise only really gets at gymbabes.

That's about as interesting as today's entry is going to get I'm afraid. Because of the cold weather and the havoc it plays with my joints I am still stuck in the flat. Basically at the moment, if it's not essential, I'm not going out! Across the road was bad enough pain wise, had to wear tubi grip on my ankles, knees, elbows and wrists in an attempt to provide them with some support as well as keep them warmer. So other than baby and toddler group I've been doing bog standard mummy stuff, feeding, playing and clearing up. Mum and dad came round later in the afternoon to help me out for a bit. As a nice surprise Chris came home 2 hours early as his department was over staffed, always a bonus!

Having said all that, I took a break from writing this for a while and in that time became sufficiently annoyed by a link I got sent regarding everyone's chief jerk, a certain Rod Liddle. A friend sent me a youtube link to him attempting to redeem himself on The Nolan Show, BBC Radio Foyle. If you haven't heard it I have put the video link I was sent right at the end of this entry.

Now I'm not going to go off on one about everything said in the interview as the clip itself is 15 minutes long and this entry would go on forever. I just want to make a few points clear:

  1. Mr Liddle, you claim that you were only targeting those who were pretending to be disabled. WRONG! Regardless of your intent the article's wording alone clearly targets two main groups, those suffering with M.E and Fibro. Not to mention that you portray the idea of having a disability, a blue badge and getting to use disabled toilets as "cool". A concept so obviously insulting to those people who do have the bad fortune to have a disability, to need to that blue badge and who are only able to use the disabled toilets.
  2. You state that there is no known cause of M.E/CFS or Fibro. Here you are, surprisingly correct. But you fail to mention that there is a blatant lack of funding for biomedical research into establishing a cause. And, if this was to occur the likelihood is one would indeed be found.
  3. You state that there is no agreed treatment for M.E. WRONG. It may not be a consistent treatment that works for all, but there is an AGREED treatment. There are NICE guidelines in place on how to treat patients with M.E, which should be adhered to by all medical practitioners. They may not be particularly effective, but they DO exist and it IS an agreed treatment (or a list of agreed treatments and procedures, if you want to be really technical).
  4. The woman defending the rights of the disabled makes a point about diabetes, which she doesn't get to make very clearly due to Mr Liddles repeated interruptions! But the just of the conversation is she is in fact right and you are in fact very WRONG! Diseases such as diabetes, MS and epilepsy were also once in the same position as M.E and Fibro. They were diseases thought to be in the mind, little was known about them and there was a huge social stigma attached. Eventually the right funding was granted, the right experiments undertaken and a cause found. Once a cause was discovered a treatment could be devised. I am sure Mr Liddle wouldn't dream of insulting the sufferers of these aliments. I am sorry sir, but there is a big difference between misunderstood and imaginary.
  5. Once again, you state that you never had the intention of insulting those who are actually disabled only those pretending to be. WRONG. Put yourself in the mind of the disabled individual Mr Liddle, maybe one of those individuals with your "newfangled" diseases. Now read your article again. How far would you honestly read before you stopped, before you were insulted. Well strangely enough you insult everyone before you make your point. Idiot.
Anyway, here's mine and Niamh's 366 photos from today.

Niamh swaying in her pretty dress:




Night all, as promised the link will be at the end of the entry.



And the link to the video:


    Thursday 2 February 2012

    If you don't laugh, you cry.

    The saying is "if you don't laugh, you cry" well I did enough confused, worried crying last night so I thought I would make my post mostly light hearted today. Firstly though, last night was hell. Should not read the Spartacus report feeds on twitter before bed. I have had enough of politics, the government have lied, cheated and manipulated their way to leaving the most venerable people in society even more exposed. The disabled, cancer patients, children, families already below the poverty line, you name it they've found a way to screw them over. It really worries me, of course for my future and that of my family, but for those already worse off than me. For them and for myself and for the lack of democracy in which I once believed so strongly, that is why I cried.

    So now, I have made two decisions, the first, that if I'm going down, I'm going down shouting, screaming and fighting. If they are going to make these changes, in such an unfair, unjust manner, by lying, cheating, manipulating and breaking every rule in their flipping book then EVERYONE is going to know how they did it. Reform is obviously needed, but they are not thinking it through and they are targeting the most venerable in society whose voices are the quietest, well, not anymore, alone we whisper but together, together we can shout!

    The second, and much more light hearted is that I've done enough crying so now I'm going to laugh. Having M.E and Fibro sucks, it really does but if you can't laugh at the situation you'll only let all the negativity take over your life, and the way you think. I laugh at myself often. Usually when I fall over nothing, throw something for no reason or get my word in a complete muddle! Other people laugh at me, usually when I do the above (on occasion simultaneously). So I thought I would search through the Internet in search of some M.E/Fibro related giggles! Here is what I have come up with! Obviously they are American and if you can translate the clear differences in language (gas/petrol) they are a right giggle! I've added the bits in brackets!

    You May Have Fibromyalgia If...
    Author Unknown
    1. you forget spending the whole New Year's Evening with your husband!
    2. you are in your own jeep, and stop for gas, however, you can't remember where the gas tank is located until another customer shows you! (Can't drive, but this is the sort of thing that would happen to me!)
    3. you complete your whole grocery shopping excursion while wearing a soft-blue-gel ice pack on top of your head, while your husband follows 3 steps behind you! (I actually do this, but said husband has to push me in the wheelchair, so can't walk 3 steps behind! Hee Hee!)
    4. you are constantly doing 'head' counts of your own children, and pets! (I do this, I only have one child, well, unless you count Chris?)
    5. you leave every day for work using the front door, but must climb back into your home using a window after your work day is over! (I clearly can't work anymore but I have been known to do this. In my dads house. Through the downstairs toilet window. Head first. Into the sink. Because I thought I'd forgot my keys. I hadn't.)
    6. you rub a whole tube of Ben Gay all through your scalp to help your migraine! (Bad, Bad idea!!!)
    7. you tell the same story more than 3 times to the same person! (In my case, normally also within the same 5 minutes!)
    8. you make your two monthly mortgage payments to the wrong bank EVERY month, having to go back out the next day to switch them! (Husband takes care of the rent, good job really!)
    9. you go to the movie store with your fiance to choose a movie, and after picking the one of your choice, he politely tells you the two of you saw it the previous weekend! (I kind of see it as a perk that I can watch the same thing over and over again as if I've never seen it before!)
    10. you drive 60 miles for your monthly support meeting... only to find out, you are a week early! (Once again not beyond the realms of possibility)


    So that's Fibro out of the way, what about M.E?

     
    You Know You Have CFS When...
    Author Unknown
     
    ...when you are cautioned to slow down by your doctor instead of by the police.
    ...you have a choice of two temptations and you choose the one that will get you home earlier.
    ...you realise that caution is the only thing you care to exercise.
    ...you don't worry about avoiding temptation. With CFS, it will avoid you.
    ...getting lucky means you found your car in the parking lot.
    ...you're sitting in a rocker and you can't get it started.
    ...you don't care where your wife goes, just so you don't have to go along.
    ...you wake up with that morning-after feeling, and you didn't do anything the night before.
    ...the doctor says "I have good news and bad news -- the good news is that you are not a hypochondriac..."
    ...you go to make toast and nothing happens. You've plugged in the can opener.
    ...you say to your wife, "Good morning, Mary"...and her name is Sharon.
    ...you have to sit down to brush your teeth in the morning.
    ...you become exhausted trying to blow out the candles on your birthday cake.
    ...you forget your twin sister's birthday.
    ...you realise that you just sprayed spot remover under your arms instead of deodorant.
    ...you put both contact lenses in the same eye.

    Niamh's 366 pics from today.


    And Niamh, just having a lay down.


    Night all.


    Wednesday 1 February 2012

    Lost generation?

    One of my facebook friends mentioned in a status update about my generation being tagged the "lost generation". In his post he had a point, that although the current climate sucks for my generation there have been far worse. There are generations pre-benefits systems and pre-NHS that couldn't afford health care or not to have jobs and ended up in workhouses. There was a whole generation of young men forced to go into battle and die on the front lines of world war one. Those that survived were those that had to live through two world wars. In comparison to them, my generation has it easy. That is a definite.

    However, compared to our parents generation for example, it could be argued that we do have it harder. I believe the tag the "lost generation" is wrong, but we defiantly don't have it easy. As someone replying to his status mentioned we really are more like the generation of broken promises. We were encouraged to stay on in school, do A-level's at college, go to university and obtain a degree (or degrees). We were told that jobs were plentiful and it would be easy to pay back the amount of debt we have ended up in through higher education once we were in our well-paid-professional-degree-requiring jobs. What has happened is that we all left university, to a changed world. These promises could not be kept. The economic situation had led to millions of redundancies (including my own at one point) and a massive amount of unemployment due to obvious shortage of jobs available and companies not even hiring to replace those who have left. Our degree's became almost worthless as the amount of positions available has become so low, and many don't require a degree. Although, obviously having one might give you the edge I suppose, but many of my friends have been told they are simply too well qualified. With applicants being sometimes in excess of 300 for one post, you can see how the amount of young people that are unemployed easily mounts up. We were plunged out of degree-land into a world we no-one wanted us, in tens of thousands of pounds worth of debt.

    It's not just a problem when it comes to debt or employ ability. Housing is another difficult area. With many of us being unable to buy due to low income or bad credit, there are two options left: private renting and council housing. With approximately 40 families competing for each available council property it would seem private renting is the way to go. Well, that's before you factor in the amount you pay in rent is often as much as a mortgage. Housing benefit is available to those who otherwise could not afford to privately rent, but actually letting somewhere on housing benefit can often be an up hill struggle. This is due to the fact that many letting agencies and landlords stipulate that they will not accept tenants on housing benefit. Mainly due to local authorities haphazard payment schedules. Although there is, technically, all this potential. in reality it is simply one hurdle after another.

    All this obviously affects me. This is before you factor in other concerns. For example, disability and relationships. Being disabled presents problems in all areas. You are obviously less employable, this is true for almost every disability, although some are clearly more employable than others. M.E and fibro, for example prevent many problems for a potential employer. Some of which include, differing abilities (one day may be able to walk, another day be on crutches, and on a third day be confined to a wheelchair), lack of ability to concentrate for a long period of time, unpredictable and often lengthy time off sick. As I have said before who would want to employ someone with all of these problems? I know I certainly wouldn't. From a housing perspective also disabled people once again, face problems in all areas. You often can't afford to buy due to lack of work. There are fewer council houses that fit the bill required by a disabled person. Due to lack of work many disabled individuals will receive some form of benefits, usually including housing benefit. Then, if you are fortunate enough to find a landlord willing to accept housing benefit you are unlikely to find one will to allow you to their modify their property to meet you needs. So, you either have to accept their offer and try and make do with minimal modifications (as I do) or continue your search to find somewhere that meets all your needs.

    As for relationships, it is easier, from the point of view of receiving benefits, to be single. I am good example here, because I am married, and my husband works in excess of 24 hours per week I cannot receive ESA. If I was single, or even in a relationship but not co-habiting, I would receive ESA. I would also get the full amount of rent in the form of housing benefit. And the government wonder why people don't marry? There are many other examples I am sure.

    NHS that provide me with health care that I otherwise could not afford. I had the opportunity to go to university, not once but twice and therefore have qualifications in two different professions that may be of use to me someday. I can't work because I am too sick, but I can claim benefits, so although it is tight I can live, I can get by, I don't have to work myself into an early grave or end my days in a workhouse! No, chances are I probably will never be able to own my own home, and though this makes me sad it is not the be all and end all, and there is always hope however small. Although I cannot make all the modifications to my flat that would make my life easier I can make some, I can rent privately, I have found a land lord that will accept the contribution our housing benefit makes to our rent and I am not forced to live with family whilst having a husband and a 1 year old! It's truly all about the way that you think about things.

    If presented with all the above facts, I count myself as lucky to be part of the "lost generation" because we are clearly not as "lost" as others before us. I have somewhere to live, a loving husband, supportive family and beautiful daughter. Sure it would be nice to have my health, a house, a job and some money but it's not stuff I need. I have all I NEED and more, I'm rich in love.

    Now rant over, here are mine and Niamh's 366 photos from today:


    And Niamh, doing her kissey face, so sweet!


    Night folks!