Surveys surveys surveys!!

When I became disabled I was training for a teaching degree, which after postponements and an awful lot of trials and tribulations I achieved.  However since that time my health has become steadily worse and so I’ve been unable to work.  Life on benefits is far from what the media can make it out to be, far from a life of luxury enjoying the finer things in life it’s more like scraping for every penny.  I regularly have to make hard choices between those necessities that I need right now and those that I can do without for a while and save up for.   I am discriminated against because I live at home and I am unable to claim help with my housekeeping costs.  Free cars from motability are a myth, you have to be on a certain level of disability benefits and those benefits are instead paid to the car company to finance your car.  Fear not, I’m not going to get into some self-pitying rant about my finances and why I have no money that isn’t what I wrote this post for.  No what I did about my lack of finances was try to find something small that I could do when I was well enough, and something that I could do as and when I wanted and could.  Now a job was out of the question, there are very few jobs about where you can show up just when you are feeling good enough, do as few hours as you can manage and expect to be paid for the privilege.  Working for myself was also out of the question, apart from my crafting which I currently don’t do to sell, because I could never regularly work and complete things in a tight timescale.  So there isn’t really much I can do, that is until I found surveys.  I found a good number of reputable companies (one of which I’d been signed up with for a long time) and I have to admit that at least to start with I went a little mad.  I signed up for as many as I could some pay out, when you reach a certain threshold, by cheque.  Others you gather points and then are rewarded with vouchers.  I have now thinned down the ones I do because you can find yourself spending the whole day doing survey after survey without a break and it can get addictive.  So I thought that I’d share with you a few of the ones that I have found are good.  I am not being paid for my opinion, and this is just my personal view I cannot be held to account if you come across any problems with using them you use them at your own risk.

  1. A few tips first though:
    1. Sign up to one or two first then if you enjoy doing them and can manage you can sign up to more after.
    2.  Give yourself a limit.  It’s very easy when doing surveys to spend hours and hours completing them only to find you’ve got to the end of the day and don’t nothing constructive.  Allow yourself a couple of hours or how ever long you can spare and ignore any others that come after that time.  You may miss out on the odd survey but you will find that you have more of a life!!
    3. Don’t expect to make your fortune, while these surveys give you some vouchers or a little money it can take you a long time to save up.  For the ones that you get money for it can take over a year depending on how many surveys you complete, the voucher ones tend to build up a little quicker but you are often limited to the places you can have vouchers for!!
    4. Be prepared to be screened out regularly.  Some you are lucky and you get to do every survey you are sent, others you have to go through a good number of questions before you get chucked out.  It can get very frustrating especially as some companies don’t offer you any points for the time you’ve already spent on the survey, others give you a token amount of points e.g. 5 or 10 for the effort.
    5. Be discrete.  Most of the things that you review haven’t been released yet and you will usually have to agree to keep the idea’s secret, they will not want or allow you to tell others about them.

So to the sites.  I won’t bore or inundate you with all of them but here’s a few select ones which I have found quite good.

1. Yougov – http://www.yougov.co.uk is a good one. You don’t get screened out of surveys (or it’s extremely rare once you’ve completed a number of surveys). You get generally around 25-75 points per survey and it pays out when you reach £50 or 5000points. It takes a while to build up but the more you complete them the more you are offered ones that pay out slightly more.  It has taken me between 6 months and a year to build up to payment.

2. Valued opinions – http://www.valuedopinions.co.uk can be frustrating as lots of screenouts but you only need £10.50 to get a pay out of a £10 voucher. This pays in vouchers and has lots of choice (Amazon you have to save up £15.50 though so be aware) you get lots of surveys a month/day so you can do as many as you can. It doesn’t take as long to save up. Surveys pay out usually 50-100 points and you get some more. Occasionally you can try out products too.

3. Survey Bods – http://www.surveybods.com is good. You don’t get as many surveys as others but also don’t screen out as often as some other sites. Surveys range in points and you have to get £15.00 for pay out although this often takes me a few months. This only pays out in Amazon vouchers.

4. I.say from ipsos – http://www.isay.com is good. You have to get 1380 points to get a £10 voucher but builds fairly quickly. Vouchers are a little limited they have a high street voucher, Amazon and some others. They’re good because if you screen out you usually get 5-25 points for the work you’ve done so you don’t feel that you’ve done work for nothing. Occasional product trials from this site too.

So see what you think, if you sign up hope you enjoy. As I said this is all my own opinion I’ve not been paid for these and cannot be held responsible for any problems or issues you have.

 

My first ever disabled dream.

So the other night I had my first ever (or that I can remember) disabled dream.  I think that having been able bodied before and having not used a wheelchair for a lot of my life I have always dreamt that I was still able to walk about.  My dreams seemed to be an escape from my everyday life which is full of pain, dislocations and disability.  Instead of being confined to my wheelchair, in a dream I can run free and do the things that in my normal life seem a distant memory.  In my dreams I can do things that I never could or would do even when I was able bodied, because as Albus Dumbledore says (yes I am a HUGE Harry Potter Fan) “For in dreams we enter a world that is entirely our own”.  I don’t know whether it is a more conscious thing that I escape to my dreams to have the existence that here on earth seems impossible, or whether it is just that my subconscious has never got used to my disability but whatever it is I just seem to dream that I am still able bodied.  However the other night I had, as I said, my first dream where I was actually disabled.

Now it wasn’t your everyday dream, it was actually quite boring on the surface of it, no particular fantasies or fluffy pink unicorns just everyday life played out.  I was electric wheelchair shopping, so this part was still doing something that in my day to day life is beyond me as I still have yet to qualify and be helped with an electric chair (despite now very much needing one).  I was even shopping with a boyfriend, who because I don’t and haven’t had a long term one I never saw the face of.  However there we were looking thorough rows and rows of sparkling wheelchairs, all meeting my own personal needs (again rather a fantasy part as no shop would sell wheelchairs only suitable for one user).  I was being pushed and helped by my dream boyfriend who was kindly lifting me out of my current chair so I could try the different ones, this was again more a fantasy than reality as any “normal” sized chap would struggle to lift me at my current weight.  So anyway here we were happily trying out chair after chair after chair, even moving onto hoists afterwards (which thankfully apart from at the swimming pool I don’t currently need) so it wasn’t a sad dream.  It was after this that I woke up.  Now I don’t know whether it was the dream or that it was just a particularly bad day, it could even have been that I had moved more in my sleep but whatever it was I woke up feeling worse than I remember feeling in a long time.  Usually, even if I wake up with a dislocation, I wake up feeling even slightly better than I did when I went to sleep.  But I felt awful, like I’d normally feel at the end of a particularly bad day.  I ached, I felt really low and my body was reluctant to move.  I personally, if I thought about it, would have thought that waking up after a dream about running or doing able bodied things would have made me feel lower.  You know waking up to find that it wasn’t a dream that you were disabled, that you cannot walk without support and sticks and that you need a wheelchair.  But it didn’t, this simple dream about trying out wheelchairs and being in my wheelchair seemed to make me feel worse.  As I say I don’t know whether I would have felt this bad even if I had had my “normal” sorts of able bodied dream, but that one day I struggled to get through on so many levels.

So anyway I have been thinking about it since and have come to the following conclusion about it.  I do believe that it was the dream that made me feel particularly bad, not because I am in denial about my disability but rather because I need to escape the reality even if just briefly.  I need to run about and play and not have to think about wheelchairs and access and equipment, I need to dream about these things if just for a bit so that I can better cope with my everyday reality.  So I hope that in the future, even if I dream that I am in my wheelchair, that it still includes fluffy unicorns or some escape from normal everyday life!!

Blood pooling, and pregnancy looking swellings .

On the whole I avoid contact with mirrors and cameras, they are evil things that show up the slightest of floors. I even only look at the bit I’m doing in a mirror on those rare occasions I wear make-up, I’ve perfected the just looking at an eye or my lips and not seeing my whole face. But mum and dad have been decorating their bedroom and had problems with the mirror panel so it got put in the room that my carer helps me do my hair in. I actually didn’t realise this until this morning, as I said I’ve perfected not looking at or for mirrors, when I happen to glance to the side while my carer was drying my hair. Now I could say I was horrified to glance my chunky legs because they’re so big, but for once it wasn’t this that struck me. To my horror my legs were a mass of mottled patchy blue, purple, red and white. This was even worse on standing. I know that I have POTS and I know that this causes blood pooling, but not being someone who likes my legs I’m loathed to get them out even on the hottest of days. Usually I am to be found with cut off trousers which show barely an inch of skin before my splints, so when wearing my towel and dressing gown this morning meant that for once most of my lower leg was on show. I could, for the first time, see in all their technicoloured glory my badly bloodpooled legs!! I don’t really know quite what I expected, whether it was blissful ignorance that I didn’t think my legs did this or whether I was just stupidly forgetting this symptom but whatever it was it did shock me!!! I couldn’t take a photo of this (my phone being doenstairs) but there they were, they even did it again when mum was helping me get ready for bed so she saw this phenomenon too.  It is yet another sign that my POTS will not be igmored any more!! 

On of my other strange symptoms at the moment is my gloriously swollen stomach. Now I know I’m no size 2, far far from it, but this is quite obvious swelling. My stomach can go from usual to looking heavily pregnant within minutes. I have very bad IBS symptoms and know that I should really do a low histamine diet but I can’t face it!! Now some of the benefits of this are obvious, before I was pretty much full time in the wheelchair I used to get offered seats and people used to be nicer to me as I was “pregnant” it’s not so much of a benefit now because I’m more obviously disabled though. I’ll put a piccie so you can hopefully see what I mean about the swelling!!! But unfortunately it seems that this is just one of my bodies tricks because however much I’ve tried I always seem to swell. You never know I might end up getting a solution but until then I will randomly end up looking like this……..

Why making fun of me, for falling asleep, hurts so much….

You might think it’s funny when I fall asleep at 5pm or throughout the day, you think it’s hilarious that I can’t stay awake through a t.v. programme or a film but let me explain why that happens. Let me explain why it hurts when you think it’s so funny that I am always tired.

No1. It’s not just being a little tired, my whole body aches with the effort of trying to stay awake. I’ve had days where exhaustion just overwhelms. It is fatigue and fatigue is very different to tiredness. It’s very hard to explain but tiredness can be rectified by a nap or a couple of good night’s sleep. Fatigue is relentless, your mind and body are tired; lifting your arm hurts with effort. You can barely string a coherent sentence together and thoughts stay fleetingly in your head before flying away never to be seen again. You cannot stay awake however hard you try because the effort of staying awake is in itself a huge effort, think about trying to swim in a pool of treacle with a full near costume on, could you do that?? Not easily!!!

No2. I have insomnia and painsomnia and that’s not fun. Insomnia speaks for itself, I tend to go to sleep ok but cannot stay asleep. 2am is my normal wake up time where, if I don’t get up I end up feeling worse. I therefore have made binge watching box sets of dvds in the early hours a new art.  Painsomnia is something that people without a long term condition often haven’t heard of. Instead of just being unable to sleep painsomnia instead is where you cannot sleep because of pain. Usually I wake up because I’ve dislocated or sublaxed a joint. Waking up with a hip or knee on a glorious midnight walkabout is not really my idea of fun, if it’s not those it’s my shoulder making my arm do a great impression of no longer belonging to me!! It’s not exactly conducive to a good night’s sleep. The midnight dislocations are inevitably followed by the lenghthly relocation process, wriggling about until the glorious pop moment when you know it’s back where it should be.  I know then that I need some painkillers and a recovery period so again am to be found on the couch binge watching box sets. Now much as getting to watch my great dvds is good, the timing could definitely be better. I’d much rather be watching tv at a normal time and sleeping 7 or more hours a night, but my body has other ideas and so at an average if a 2am wake up time is it really any wonder I drop off at 5pm?? To me I’ve often been awake 15 hours!!!

No3. What takes you 10 minutes has taken me 40 and used every last bit of strength that I had left. Now a lot of people use the spoon theory to describe our energy stores. The theory goes that you start the day with x amount of spoons, during the day everything takes some of those spoons until you have no more left. Most people have the chance to replenish their stores during the day with either food or less taxing tasks. To me however there are no less taxing tasks, each one is hard. Some, yes, do take different amounts of my energy but they all take energy and so before the 3nd of the day I’ve already run out of “spoons”.

No4. You think I’ve been sat doing nothing all day, when in fact that “nothing” has taken so much effort I’m exhausted. Just sitting takes a lot of energy especially on a bad day. EDS makes any movement difficult, the threat of dislocation looms at all times. It is an effort even using brain power especially with brain fog when you cannot really even think what your own name is. You have to think about how to get up off the sofa, you have to think how to do everything to minimise either having symptoms or to make sure you don’t have an accident e.g. a fall or trip over etc. Having POTS and my other conditions means that maintaining an upright position even seated takes effort. My pulse races and so I constantly feel ill from that, it’s exhausting. Added to that you have a mountain of appointments, every few weeks you have to military plan how to get to said appointments, who can take and assist you and then you have to plan what you are going to say. We find that so many people in the medical profession haven’t heard of EDS or if they have a many more have lots of wrong ideas about how it can affect you, this means that you have to go prepared and read up on things too!! It can be a full time job. I also complete surveys, it keeps me busy and gets me vouchers to spend on things I couldn’t necessarily afford. These take a lot of brain power and again effort just to sit up doing them.

No5. It means that you don’t understand what I go through and why I’m so tired. Your teasing, whilst not meant to be mean, shows me that you don’t understand all these problems. You don’t understand how much just living day to day is. How hard I find it to do anything, how even sitting takes a lot of effort for me. You don’t see that I don’t like that I can’t stay awake, that I’d much rather be watching programmes I like and doing crafts. You don’t understand that however much or little sleep I get I’m still fatigued all the time and that you just don’t see that I don’t choose to fall asleep. It is simply that my body has given up, has no more energy left and has no choice but to shut itself down. 

So yes I do fall asleep a lot in the evenings, yes I can’t stay awake and am constantly tied. But I believe I actually have good reason why that is. I’m not after pity from anyone, but some more understanding would be appreciated.

Boring days and isolation!!

I’ve had a yet another boring day today so thought it seemed the perfect time to share about how isolating disability can be. Since becoming disabled my social circle has become very small anyways, not necessarily through anyone’s fault but more because going out full stop is rarer. Before my disability I was training to be a primary teacher. I hurt my back in the first term and had to give up the rest if the year. When I returned I was part time in a wheelchair and used my walking sticks/crutches the rest of the time. While others arranged evenings out and became good friends I had to shy away, making some excuse so I didn’t seem like I was being difficult. “No I can’t come out tonight, my mum is ill” when really it was I need to go home and lie down to recover from being sat up concentrating all day. Or I’d say “No I’m sorry I can’t go to the pub straight after uni, I’ve got an appointment” when actually it was that I didn’t want to get there and realise no one had thought about access, or spend 20 minutes dismissing ideas for places to go because they werent accessible only to end up not being able to go anyway!! It became so that people didn’t ask me to go because they knew I wouldn’t come, it wasn’t that I didn’t want to it was that it was too difficult to go. Since finishing my degree I’ve not been able to work, I was exhausted and my health and mobility deteriorated and my one freedom which was my car got taken to that scrap yard in the sky. I became very isolated, I couldn’t self propel very far (I now can’t at all) and instead of just being able to go out for the evening or day I had to plan everything. Pacing had to be planned to make sure I had the energy to get the most out of the activity (whatever it was) and access and transport had to be thought of. I had to put upon friends to get them to lift my wheelchair in and out of cars etc and push me when I couldn’t manage. It just was far more difficult to do anything. My really good friends are still there but I don’t get to meet new people and you feel bad putting upon your good ones all the time. 

I think one of the biggest things too is that not going out much has left me limited things to talk about. Most people talk about family, other friends, places they’ve been or things that have happened to them, they talk about work and things on tv etc too. This is not a criticism, it’s just what people do usually chat about. But I don’t usually have those things to talk about. My world is consumed with health issues, doctors and hospital appointments and managing my illnesses. Instead of talking about normal things I have only my disabled equipment and issues to discuss and it might be that the only people I’ve had to talk to all week are my parents (as I live with them) and the only times I’ve been out were to the doctors. It does limit ones conversation rather!!! Imagine a friend telling you all about their new workspace and all you have to tell them is about the incontinence nurse, it isn’t really what anyone wants to hear about. I have some great friends but they live in the “real world” where you go looking at new cars not new wheelchairs. You try not to bore people with all this but then what do you talk about when they ask what your week has been like?? It certainly makes you an expert in talking about the weather, or turning the conversation back to the friends interesting week!!!

 I know that it’s hard to be friends with a disabled person, but it does mean an awful lot to me when people actually stick by me. The ones who’ve visited me when I’ve had operations or who’ve text me because they know I’m struggling are so appreciated. As are those who still ask me out, who will lift my wheelchair and push me around. But what definitely means the most is those who understand that I might not txt all the time because I don’t have anything to say; I might not be able to go out as much or to the same places; but I am still me.  Thank you to those of you who still remember that xx

Carers and phone calls

I’ve been having a bad few days so haven’t been up to posting. Today’s post I decided to write about my carers.

I’m lucky in a number of ways but one of those is my wonderful carers. I’ve deteriorated so much I have 2 different ones. I have my wonderful mum, who I love spending time with and who is my full time main carer, and then I have a regular carer from a care agency. I’m lucky on the whole the carers I’ve had from the agency have been really great and have become good friends. My current one takes me to appointments and helps me shower, do my hair and get dressed. I’ve had to make my peace with the fact that I need help with showering. I’ve always hated my body, I’ve got a patchwork of scars on my stomach from 3 keyhole surgeries (why they couldn’t go in through the same holes I will never know but presume there is some medical reason why not). 15 different sized keloid scars make me look like I’ve either had my body rebel against me and split apart or that I’ve been the victim of a very vicious pixie attack where their little sword has pierced my stomach in short little bursts!! It’s not pretty. Even when I had lost all my weight, (I had a gastric band and lost 6 stone) or before I’d even put my weight on, I had a sea of bright stretch marks shining on my thighs and stomach like waves rippling on an ocean, due to my EDS and my stretchy skin. I won’t go into any more detail as I have gone far into the realms of too much information already but needless to say I hate my body. Getting used to having another person helping me shower has been extremely difficult, my carers have been such that they have taken some of the embarrassment away, but I still do feel a little uneasy. However I do need them as I cannot manage on my own now. They also take a little of the work off mum who, apart from this hour in the morning and for certain hospital appointments, looks after me for the rest of the day.  I have so much appreciation for what my carers (especially my mum) do. 

However some people I rely on like my mum are tired themselves, it’s not that she doesn’t help me as she is always there for me but I wish I didn’t have to rely on her so much. She has a heart condition herself and also seriously arthritic hands.  I have been trying to get mum some help from carers support  (in the UK as am I) but they require a phone call, phone calls for me (and my mum) take all my energy, the sheer terror that a ringing phone sets off can trigger a total panic attack before I even answer it. Making a call takes every ounce of strength to remember to breathe,  follow the conversation and formulate my answer that often I can’t physically listen to the other end, I have to forget that long pauses on the phone don’t work and people often get frustrated with me. Either that or I can’t stop myself from interrupting their comments because if I don’t say my thought then and there I will forget it, again making the person on the other end of the “conversation” impatient with me. I used to write a short comment to read out before I started a phone call saying that they had to give me time to think and they had to be patient because sometimes I would have to ask them to repeat things, but even that didn’t work and I used to get them being even more impatient so I have stopped. I even have a message on my phone asking people to leave me a message so that I can expect their call and hopefully answer it and that I will block those who don’t leave a message as I will assume that they aren’t genuine (because I’ve had countless PPI, injury lawyers and other scam/nuisance callers), but again that seems to annoy some who leave stroppy messages!! It’s lose lose for me because it all adds up to my total avoidance, wherever possible, of using the phone. But when, like now, either I or someone I know needs something I spiral out of control again just wrestling with whether I am able to build myself up enough to make one simple call or not.  I just wish that getting help wasn’t so hard!!!

So what I will do about getting help I don’t know. But we’ll muddle through I’m sure, we’ve had to up to now!!!

When you realise your scooter isn’t even as fast as walking!!!

So yesterday was a bad day. Seems the pressure and thunder affects me more than I thought and whilst in Waitrose I almost blacked out and also was feeling terribly seasick with my POTS. However it’s the funny ish moment that happened after that I’d like to share with you today!!!

Mum and I were walking down the high street when thunder was heard and was so loud it was also felt. My mum jumped out of her skin. I HATE thunder. I’m petrified of it. If I could I would still go into my parents bed and shake as I used to do but at 38 and disabled this isn’t really feasible anymore. However we were outside so I wasn’t particularly happy. However as it wasn’t raining we carried on planning to continue shopping. Lulled into this false sense of security we didn’t go into the shopping centre at the nearest entrance. Big mistake!! BIG spots of rain started falling so we started to speed up, but within seconds the heavens had opened and saw shoppers diving for cover in the nearest shop doorways. Being on my scooter I can’t really do this without making shopkeepers angry for blocking their door and knocking others out of the way!!! Split second decision we decided that the shopping centre was out best bet. Mum started running and I floored (or whatever you do to a mobility scooter) my scooter, mmm I thought this really isn’t going too fast. Mum told me not to wait for her, but unfortunately my scooter didn’t go any faster!!! I was desperately willing it to go faster while OAP’s children and other shoppers are fleeing past giving me very strange looks trying to work out if I actually liked getting wet or I was just  stupid getting wet while driving a scooter!!! Nope I was neither 4mph is simply not as fast as fleeing shoppers!!!

Now I’m not saying that I want to be going fast enough to be a speed demon leaving a trail of destruction begin me while speeding down the high street, but I did expect that I should be at least as fast as my mum jogging. What I didn’t expect was that whilst driving full pelt I’d be overtaken by OAP’s, children and anyone and everyone else!!! I have to have a collapsible scooter because it has to go in my dad’s car and I can’t afford to get my own car even on motability because I can’t afford my rent or anything then. I do really need an electric wheelchair because my hands struggle to use the controls on my scooter, I need more back support and I cannot self propel now. But even electric wheelchairs don’t have a particularly fast top speed either. But I think that most mobility vehicles are designed with older people in mind, and because you cannot go too fast on pavements. However I think they forgot that when it’s raining you want to be able to dash for cover, not pootle along getting soaked, lol!!! I also think the part of me that likes f1 and motorsport etc is very disappointed that I can’t eek that little extra speed out of it by coaxing the controls, nope 4mph is the top top speed and that’s it!!! Jenson Button and Lewis Hamilton have nothing to worry about, even the faulty McLaren engine could lap me many many times over probably I could do one lap in the time they’d have finished!!! Ok maybe not quite, but they could even beat me walking round a track!!! 

Typically after getting soaked I decided a pac-a-mac would be a good idea, bought one and emerged from the shopping centre to the sun trying to break through the clouds and no rain in sight!!! Oh well next time it might come in handy!!!