Blood test deja vous!!

Yet again two days ago saw me off to the hospital with mum for yet more blood tests!! We have researched and found out the quieter times because of my sensory problems and problems with crowds so late morning saw mum and me at the local hospital for my blood tests. Seems however that most of Horsham had had the same idea and we arrived and took our number  (Yes like a meat counter or other place you take a number and sit and wait to be called) I took number 76, but when we arrived they had just called 39. No seats in the waiting room or entrance to the room and my fear of crowds saw us waiting down the corridor on my scooter so mum was left standing. As discussed before our local surgery has stopped doing blood tests so this is our only option so we had to wait, because you cannot guarantee that if you come back at another time you’ll have any more luck. I’d forgotten my fiddle toy, as I’m preparing a going out kit bag and I’d been thinking of putting it in that. Because of that I’d forgotten to put one in my main bag. That was unfortunate because the sea of people and the lights and wait, plus the fact that the corridor has the toilets in it meant that I desperately needed something to calm me down!! Our wait of over an hour was rather difficult for me, this was our view……

Now I was glad that I was in the corridor but not sure how I would have got past the lady in the wheelchair even if I had wanted to be in there!!! So after over an hour we were finally called, by this time there was only 2 phlebotomists on duty and my stretchy crappy veins decided not to play ball!! Thankfully not as bad as my worst attempts, but I needed both phlebotomists, 20 minutes, 2 rooms, 3 changes of needles and thank goodness only 2 sticks and a vein massage to get 3 phials of blood!!! They better not need any more soon because I don’t think either mum or I could cope, and I can imagine the phlebotomists drawing straws to see who was unlucky enough to get me!!!

Arm 1

Arm 2…

But let’s see what these ones show shall we!! At the moment it really could be anything!!

It took a while to get over these my POTS and fatigue have been high since. I also have a nice bruise to remember the day!!  

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 – 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 – 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 – 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 – 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.


I know you’re going to get bored of me but I wanted to share a purchase with you!!!

Ok ok I know too many posts, but I really want to make a go of this and need to be seen to do that!!!

My first purchase arrived today so I wanted to share it with you. Let’s talk shoes. Every girls dream right??? Not mine, I’m the first one to admit that I’ve never been your typical girl, I love my motor sport and football, and used to do karate etc. I’ve never had the compulsion to have hundreds if pairs of shoes and a fancy cupboard to house them in, but since having heavy ankle splints it’s been an absolute nightmare to find any shoes to fit and that look ok with them. I have lived in my skechers as they’re comfy and look good and stretch over the splints. However despite never particularly wanting loads of shoes I have found myself wanting to find some that look good and aren’t trainers but that don’t cost the earth!!! I have tried countless larger extra wide shop bought brands but to no avail. They just didn’t go over the bulky splints. Now being in a wheelchair you’d probably say why do I need my splints on but no.1 I can’t use my wheelchair in the house currently so I have to use my sticks or crutches to get in and round, which would mean that I would have to wear one pair of shoes to get out of the house then one in my chair only to change back again after. I could see the logic in doing this only getting shoes on and off is a rather laborious challenge that often requires 10 minutes rest after and needs my mum’s help and that brings me to no.2 reason. No.2 reason is that my ankles are one of the most unstable joints I have. They are so loose that they wobble when I walk and they swell to such epic proportions that the splints at least keep it at bay a little (although occasionally I have to take them off as the swelling gets so much that it cuts my circulation off).

Anyways so with no alternative other than to wear my splints the search was on to find some shoes. I found, after a lot of research, my only option was the specialist shoe places that sell shoes in sizes past an EEE fit. Yikes, expensive and old people’s shoes came to mind. Well I have to say this is the case for a lot of them, the phrase I often say to people is apt here “I’m disabled not old.” I think that some companies have forgotten that just because we are disabled doesn’t mean we don’t care about what we look like. I searched through pages of shoes that my 98 year old grandma would have loved and was balking at the cost I would have to pay for the “pleasure” of wearing them. Not likely. Until I came across now I’m not pretending that all the shoes on here weren’t exactly the same as the others but they had a few that I liked and looked like ones I could get before my splints. There were some that I couldn’t justify spending on but I then found a pair of canvas pumps, on sale and with V.A.T off for disabled in the widest sizes, and hurrah they went up to the epic size (6-8 extra wide) to accommodate my splints. I could have cried, I ordered them on the spot and was so happy I even didn’t mind the delivery charge (something which I have my own little rant about on many an occasion) because the discount off AND V.A.T relief meant I paid the price they were to start with (if that makes sense, I apologise because my brain is still completely addled with this heat)!!! Anyways they came yesterday and joy of joys fit, and even have room for my feet to swell without cutting off my circulation. They’re soft and feel so light I might have been wearing slippers. They’ve got elastic “laces” allowing for extra stretch and elastic side panels to fit better over my splints. I’m so pleased.

So what do you think, and please excuse the ultra white tree stumps I call legs!!???


A mass of contradictions!!!

So it struck me again this afternoon what a mass of contradictions I really am!! I was sat doing a jigsaw puzzle (another one of the things that eds has curtailed, but more about that later!!) watching first the end of Le Mans 24 hour race and following that one of the top gear specials!!! Now I’m not saying that I’m completely unique in having eclectic and diverse tastes but I do, in pretty much all areas of my life, have very differing tastes. I love motor sport, cars, football, tennis and at times (6 nations mainly) rugby.  I also like gymnastics and dancing  (totally love strictly). I was even training for my black belt in karate before I became disabled. But I also like many arts and craft related things like knitting, crochet, cross stitch, jewellery making, sewing, colouring, cake decorating, baking and any other crafts I can try my hand at. My music tastes are somewhat different too everything from Nickleback, Linkin Park and Queen to Take That, the Backstreet Boys and various other pop music and others in between!! I even at the right times like classical  (especially Tenors like Alfie Boe and Russel Watson) and I love musicals. My diverse tastes don’t stop there and my films are as different as Disney to action and Rom com’s to some sci-fi like Star Trek and of course again musicals. So I enjoy a wide range of hobbies and watching and listening. However diverse my tastes are though my EDS and other conditions don’t discriminate.
Sitting finishing the last 20-25 pieces of my puzzle off my POTS was going mental, I was ready to fall asleep with fatigue from my symptoms being so bad all day and my carpal tunnel and tendinitis were causing problems picking up the small pieces. It is frustrating when you used to be able to work at these tasks for hours on end and yet now sitting at the table for 10 minutes left me sweating with the effort (and soaring temperatures) and my kneecaps going for a walk around my legs. Break no.1 for a drink and relocating said kneecaps and I try again.  This time brain fog had set in too and so I spent the first couple of moments staring at the puzzle trying to work out exactly what I was supposed to be doing with these little pieces, once my mushy brain stopped doing a good job of being completely absent I carried on having another break after another 10 or so minutes. 30-40 minutes working interspersed with 5-10 minute breaks  (each time) and my puzzle was finally finished. Rather than putting it away and starting my next one my EDS, POTS, fatigue and other symptoms were so overwhelming that the rest of the day (as had been most of the day before I started my puzzle) saw me lead out on the couch trying not to move instead of carrying on to start another jigsaw!! But this, far from being a once off because of the heat, is instead a regular occurrence. Whatever my activity, whatever I’m doing has to be carefully paced. I have to have a couple of things on the go, a craft, computer time, TV and music are carefully alternated giving me the energy to get through a day. A task that would take most people 30 minutes can in fact take me all day once breaks, easier tasks and eating and drinking have been carefully choreographed to allow me to still do the things I love. Now I’m the first to admit that my “pacing” is absolutely rubbish, I do things when I should be resting and can get quite stubborn when trying to carry on. I have an amazing “pacing kit” from Stickman Communications (I will put the web link below, but if I forget please ask!!) but because I don’t have anywhere to put it up it is sat waiting for either me to move out or things easing to allow me more space here to use.

 So for now I will continue to try to pace where and when I can, and I will still (I’m sure) fail at times and do too much. However despite my EDS and all my other conditions I will continue to do as many as diverse and eclectic mix of hobbies as I can, you could say that my diverse tastes are actually useful because at least when I find one hobby sitting up too much I can instead pick up one of my other ones for a break!!! Who’d have thought that my strange mix of hobbies would in fact end up being helpful when pacing!!! 

What do you think of my puzzle (a limited edition wasgij)???

As I knew I would I forgot to put the link on. Love loads of stuff from here but for the pacing pack just search for pacing on: