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.

 

Phew, that wasn’t as bad as expected!! But has anyone seen my knuckle??

Today was D-Day, my first appointment with my new doctor.  I can’t say that I was looking forward to it.  My brain was in total overdrive and the two nightmares I had last night definitely didn’t help.  I had written my list, an essential piece of my doctors appointment equipment for without it I am a blithering idiot, a list that unfortunately had become rather long in the time since I last saw anyone because half of what needed doing hadn’t been.  I had my other piece of essential equipment my fidget toy, today’s preferred one was my fidget cube.  So with that in hand I went, I was shaking I have to admit and although my mum was with me (she calms me down) I really was dreading it.  I think part of it was just my usual doctor nerves, my sensory overload was in overdrive, but there I was in the waiting room.  I have to admit seeing the new doctor (a female when I’ve had a male for ever!!) in my previous GP’s room was rather surreal but it did make it slightly easier, and joy of joys she was nice.  I wasn’t expecting her to be horrible, I just didn’t know what to expect and for me that is always a no-no.  The unexpected and change for me are two of the things I find hardest and along with my sensory processing problems are why I suspect that I may have an un-diagnosed autistic spectrum disorder, but at 38 and with all my other problems I have to admit that it isn’t something that I’m particularly in need of exploring.  So anyway I shan’t bore you with the details of the appointment, but I shall simply say that 30 minutes later (as I had a triple appointment) 3 referrals to new specialists, 4 prescriptions, multiple blood tests requested and half a dozen problems we are putting a proverbial pin in I’d say it was a success.  I even have an appointment for next month.  I have slightly settled since, my heart rate has gone from a resting 135 to a more normal rate (my POTS always goes mad at the doctors as it’s too hot, I’m uncomfortably sat in my wheelchair and there’s too many people the list goes on) and I’ve had two much needed a drinks!! After that a rather nice curry, and an evening of dropping off while trying to catch up on emails I have now, I think, just about recovered!!!

I said that I wouldn’t bore you with all my symptoms but a new and rather strange one is that one of my knuckles has gone A.W.O.L.  My fingers have been bad for ages, I wear both wrist splints and finger splints on both hands (see pictures) but my knuckles are both dislocating and the disappearing one is a strange one.  It’s making everything, from operating my mobility scooter to writing and typing, really really difficult. Not really sure what’s going on apart from dislocating and swelling, but as the hand therapist I’ve been seeing has now finished we’ve got to find a new one!! That is one of my appointments, when and if we can find a new specialist!! 

So all in all it wasn’t as bad as expected. Even my visit to Currys PC World wasn’t too bad, quick and all sorted out for me. Thank you #curryspcworld. So until next time, thank you for reading!!!

My A.W.O.L. knuckle (you can just about see the bump of my ring splint where my knuckle should be!!)

My ring splints. I may post a review of these soon, please let me know what you think in the comments

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!!

Migraines and Mishaps

I’ve suffered with migraines since I was approximately 4 years old,  but you try telling the schools nurse (we had school nurses when I was at school) that you have a migraine and that you can’t do anything about them when you’re that age.  I heard that I was making them up, or it was just a headache as 4 year old’s cannot suffer with a migraine but it was a mistake that teachers and nurses alike only made once.  When I was young my migraines hit with no warning and the after effects lasted for days.  The only telltale sign that I had a migraine was uncontrollable yawning, a symptom that I carry to this day.  So I would promptly, if I started with the headache, tell the teacher “go and lie in the snuggly corner” was their usual response but falling asleep with a migraine I would really fall asleep.  Comatose was probably more like it, my earliest school memories are being woken up by my mum picking me up after such incidents with a worried teacher looking on and explaining that they’d never seen anyone fall asleep so heavily!!  The other mistake they often made was if they told me that I should take a tablet, it has only been in the last 20 years that I’ve been able to take any at all and even now I still struggle with them.  Projectile gagging and, or various incidents of them trying to get me to take paracetamol tablets really didn’t work.  I think however the worst of my migraine stories happened when I was first at secondary school.  Still having to fight to get people to believe that my migraines were real I went to the nurse to say I needed to go home as I had one.  The usual first response was suggested, that I lie down for a bit before I could go back to class, however my other rather unfortunate symptom of migraines was my rather impressive vomiting skills.  I have never been the neatest of pukers, one rather impressive feat when I was young was managing to throw up right down the stairs from the top to the bottom and unfortunately there are many many other stories of other rather unfortunate incidents.  However on this occasion the school nurse, having not believed that I needed to go home, had left me on my own in the medical room.  I managed to make it to the toilet, which was one good thing, however my aim wasn’t that good.  The nurse returned to me having managed to vomit over the entire wall, toilet and floor in the room.  Funnily enough after that if I said I needed to go home, I was sent home!!

So to my migraines now.  I have two distinct forms of migraines now, one being the same full blown migraine and the other being a manageable migraine which I call a migrainey headache.  It’s the same symptoms but I can usually take tablets in time to stave off having to go to bed for the day.  I can just about cope with migrainy headaches usually having them on and off for a day, but staying just bad enough to be felt.  I still yawn way more than you would normally expect and you can see in my eyes that I have a migraine but I can just about function as normal.  However I have a rather unfortunate side effect of a migrainy headache (because a normal migraine I have to stay in bed for I don’t actually know if I have this symptom with a full blown migraine too) of being even more comically clumsy than normal and very dopey too.  Now today I’ve had one of my migrainy headaches, it’s been there most of today.  This morning while getting ready for town, mum was trying to help me into my cardigan and at the time I also had my crutches instead of my walking sticks.  Mum offered me one arm, I managed to sort out which arm however trying to get it in was rather fun, tangles and turning the wrong way, bag straps over sticks and you have to have a bit of a giggle.  Driving my scooter into town was rather comical, although I think that the sudden urge I had whilst waiting for the crossing to change of pressing my power and surge forward into the traffic was rather more worrying however I did manage to quell that one!!  

I couldn’t work out today if my trigger was the air pressure and humidity or if it was simply my POTS playing up, it might have been both. I rarely know what has triggered one, cigarette smoke is definitely a trigger but that and stress are the only triggers we’ve identified. I have fairly regular migraines and migrainy headaches I have thankfully just got my migraine medication back after a few years without it being manufactured. I’m so glad it’s come back though as it’s the only thing I’m allowed to take and the only thing that works too! I don’t know why I’m so clumsy and ditsy when I have a migraine though but I do think perhaps that might be yet another reason why I don’t actually go out on my own, it’s probably a good thing I don’t really; can you imagine the stories if I did???

Naps are important!!

I have again had real problems with trying to think about what to write.  I have been aware that while I really wanted to connect to people about my disability and issues that I and other disabled people have, I also wanted to review products and share useful things that I have and use to help others and I haven’t had the chance to do much of that.  I haven’t been buying a lot at the moment for various reasons, and have struggled to know whether to review products that I’ve had for a while.  I hope that I can get more reviews in, and I will write more about the different parts of EDS and how they affect people but I think that it will take time and I’d rather write, at least for now, on day to day things.  I have been very lucky and my blog post on falling asleep throughout the day has been published on “The Mighty” and even was quoted in the last newsletter email from EDS UK.  I’m hoping to send more posts and articles into them so hopefully you will see me on there more and more people will find my blog though there.  So for the time being I am again posting on the insomniac side of the CraftyInsomniac!!!

It was very stormy here last night, something that my body and mind do not like.  My symptoms are much worse again because of the storms and I have a severe phobia of them.  So this morning (12.50am to be exact) saw me downstairs on the couch after having migraine meds, pain meds, and a drink listening to my music shaking like a leaf while the sky was continually lit up for hours with almost constant very (to me) scary lightening and the occasional rumble of thunder.  To those who enjoy storms it was, I’m sure, a spectacle.  To me, however, I spent the night on the couch enjoying first my music and then once the lightening had died down my Quantum Leap box set!!  I think I must have had a maximum of 3-4 hours all night.   So I had a really bad night’s sleep last night and it led to today me needing to have a nap to keep going.    But while that was exactly what I needed my body and the universe seemed to be conspiring to let me do anything but take that nap.  I first tried this morning, thinking that as I’d been up all night (pretty much) it would be better to have a sleep and then I could get on with doing my emails and concentrate a bit more on them.  So I had a drink and then settled down on the couch hoping to have an hour’s nap.  Now nothing was particularly going round in my head, it wasn’t particularly noisy  and my pain killers were working as well as they ever do but could I settle, of course not.  I tried but just could not fall asleep, I gave up but of course within an hour what was I doing?  Falling asleep while using my laptop and having a drink, in fact now I wasn’t trying to I could have quite easily fallen asleep.   I would have been very uncomfortable and woken up in a lot of pain but I could have, and was, dropping off easily.  It was lunchtime though so after I’d eaten I settled down again, within 10 minutes the phone rang.  Then again and again, 3 times, you seriously have to be kidding me I thought.

I did manage after this to drop off for a bit thankfully topping up my energy although I know, very probably, that I will still be struggling to stay awake tonight whilst watching TV.  However I just want to add a little side bar here that napping isn’t, for me and others with long term conditions, laze.  No it’s necessary, some days it’s needed more than others and some days it’s just topping up energy while others it is catching up on sleep.  So please when you see someone having a quick 5 minutes nap, don’t jump to the conclusion that they are lazy.  It might just be, like it was for me today, a very much needed sleep.  That is if you can actually fall asleep!!

An unusual request to put the crafty back into the CraftyInsomniac

Well today I’ve been getting back to being a bit more crafty, it’s always hard for me now to admit that I cannot do as much crafting as I would like to but with a lot of adaptation I can still do some things.  Cake baking and decorating is one of my loves, I love the creative nature of turning something that tastes good into something that looks good too.  I don’t get chance to do too many, which is probably a good thing because they are hard work.  I would not be able to do this any more at all if it weren’t for my mum she’s amazing and now not only lets me use her kitchen to explore this passion, but also gives me such a big hand that allows me to utilise my skills without completely crippling me.  Baking for me now means that mum gets everything that I need out, sets it all out in the kitchen for me within distance and even decants heavier products into smaller sizes so that I can handle them.  She gets the mixer out for me and  then once ingredients are mixed together she helps me lift the mix to put into tins and puts them into the oven, and then gets them out when ready.  When decorating again she gets everything out for me and helps me with whatever I need, lifting, moving and helping me constantly and making sure that when (like today) my POTS decides to rear it’s ugly head she makes sure that I take breaks and gets me drinks and helps me to recover before starting again, I seriously could not do my loves like this without her.

So onto this strange request.  The friend in question is not what you would call mainstream, it’s one of the quirky things I love about her.  Now her little girl, who she affectionately has nicknamed Doodles, is having her 6th birthday.  I cannot make it to the party, but as her cake decorating skills have become legendary (for their lack of skill as opposed to being crowning glory’s, hopefully no offense will be taken here) I asked if she wanted something made for her.  She was going to make the cake herself, which was fine but she asked me to make cupcakes.  Expecting some pink fluffy unicorn cakes I have to admit this one threw me!!  I will reveal later after some more info!!!  Wow, OK well all I can say is that although these are the most unusual request I’ve had, they certainly aren’t the hardest.  I’ve done everything from a family dog to a chocolate explosion, I’ll add some photo’s so you can see, so I’ve had some rather involved ones.  These cupcakes were nice and easy, chocolate cakes with chocolate icing.  I set to and my wonderful malfunctioning hands very soon had decided to seize up while weighing my eggs (the best way I’ve found to make good cakes every time) and one promptly ended up on the floor!!!  OK great thankfully I had spare, oh and before I started I realised that I’d asked for all ingredients except for icing sugar which is obviously needed for buttercream, hoping that the third thing would just be my malfunctioning body not any other major disaster I would get going!!.  Thankfully mum went to the Tesco express up the road for my icing sugar, and cleared up the egg for me which couldn’t be salvaged!!!  So stage number one was done, cakes baked, in the oven, mum cleaned up while I had my first break.

Cakes baked, stage 1 complete, you can’t really tell yet what they are going to be!!!

 

So onto stage number 2, fondant icing made into eyes and mouths. Still not giving it away. But I was getting very fatigued, thankfully mum was going to make a drink. I made the chocolate buttercream and left it to chill while I rested!! My POTS was also going mad so rest and feet up while I drank my drink was definitely needed. 

So final stage was putting together. Unfortunately I’d underestimated my buttercream so a bit of quick thinking was needed, mmm wonder if I can get away with it!! Yes I thought, these cakes were out of the box enough for me to get away with a little lateral thinking!! So the finished results are…….

Poo emoji cupcakes, yes you read that right!!! As I said not the most “normal” birthday cakes!!! My lateral thinking was to make “stepped on” poo emojis which, I think, I just about managed to get away with!!! 

So cupcakes are made ready for my friend to pick up tomorrow. I have to admit that they did take a lot out of me, my pain levels are high, my feet the size of mini football’s and my POTS is playing up.  I know that to most people this level of suffering would mean the end of this particular hobby, but I will not let my illnesses and disabilities stop me from doing things I love. I might have to adapt and limit things a bit but my crafty side cries out to be fed, if I couldn’t ever do these things I’d have no outlet for it and so I don’t mind putting up with the discomfort for the joy that the finished articles hopefully bring!!!

Other cakes I’ve done are……

These are just some of the ones I’ve done, they have been at various stages of my disability so haven’t all been as hard as others to complete. They’ve all been harder to do than for some people just for the simple fact that my bodies doesn’t usually play ball. But I just can’t face having to give it up completely so I am grateful to my mum, yet again, for all her hours of help and support which allow me to be able to continue hobbies like this.  I wonder what my next request will be one thing it won’t be, I shouldn’t think, is quite as out of the box as this!!!

Appointments, pacing and “The Unmentionable problem!!!”

This week I have had two hospital appointments, both at our local hospital which has meant that I have been able to get to them in my mobility scooter.  It’s meant though that for the rest of the week I’ve not really done anything, I’ve not been able to go out in between because for me that is the extent of my energy supplies.  The rest of the week has seen me on the sofa hoping to conserve enough energy to make it through the appointments.  Pacing for me doesn’t always work, I am not very good at working out what I can and can’t do and I get frustrated at my lack of energy after doing something which just shouldn’t take as much energy as it does.  Now I will admit that appointments though do take an awful lot of my energy, I have learned through trial and error that 2 is my absolute limit unless in exceptional circumstances.  It’s partly because just getting anywhere, even on my mobility scooter, uses energy but it’s also partly because appointments especially hospital appointments set off almost every one of my sensory issues. They are noisy, they smell horrible, the lights flicker and are bright, there are too many people, there are just too many things to cope with all at once.  My sensory side just wants to go and rock in a quiet corner outside and leave my rational side to go in and deal with the appointment anxiety.  You see for me hospitals and doctors have also become a place for me to fear, a place where I have heard “it’s all in your head” more times than I care to remember and so an appointment especially with a new person or department are panic inducing, will the person listen, will they have heard of EDS, will they know what POTS is, will they know enough about these things to not call me a liar?  It’s also often a place where instead of the answers I seek, I get more questions.  So two appointments this week has been my limit, and despite not doing much else to cope with these this afternoon has still seen me yawning so much that I think my mum has thought that I’ve been trying to swallow her!!! As I have been worried about my appointments I haven’t been thinking of my blog so much.  I will also be having a rest day tomorrow as my POTS during my appointments was going mental, I had a pulse rate of over 140 at one point, some of it was with the panic that the appointments set off but a lot of it was definitely my POTS.

My appointments were fairly well spread out, I had the podiatrist on Monday and then today was the unmentionable appointment!!  It’s not an easy topic to cover, for me it’s mightily embarrassing but for the first time I will bring it up, today’s appointment was at the incontinence nurse.  I have had numerous interventions to try and help with this, but nothing has worked (I might come back to those at another time if you will indulge me here) so today was solely about sorting me out with pads.  The array of the most embarrassing, sole destroying pads was brought out to show me after I was given another label to add to my ever expanding list I am now considered to be “functionally incontinent”.  To be honest at this point I was taking very little in so apart from the fact that there is now nothing that can really be done to improve this situation, it is down to my disability, I didn’t really understand that term.  I was more concerned that having to currently change my pads up to 11 times a day, the 4 pads that can be provided by the service isn’t going to be enough and the fact that at 38 I don’t want this to be my life from now on.  I also was not very happy with the pads and the fact that they were huge.  But there we are, for now at least I will have 4 pads a day provided for me on a 3 monthly basis.  The rest I will have to pay for.  We shall see what the future will bring but for me the unmentionable problem is, if you will allow an extremely cringe worthy pun, a complete pain in the backside!!