Mismatches!!!

One more of the many, many downsides of “the unspeakable problem” (incontinence, see other posts for some of the other problems) for me is the many clothes changes I’m going through at the moment!! If I was rich I have to admit that this would be a big up-side because it would be the perfect excuse to have more outfits than are needed by any normal person.  I could spend thousands on lingerie that would fit the awful pads I have to wear, and would be able to buy clothes to my hearts content.  Furthermore I would be able to afford to buy or have a wonderful wardrobe or changing room to house all these clothes. But unfortunately, for me, that is not an option. I don’t have enough clothes to accommodate the regular, up to, 4 changes of trousers a day.  My mum is washing clothes as often as she can, sometimes once a day. But that’s not enough, and alas this can lead to quite unfortunate clothes combinations. One of these combinations happened today.  As I wasn’t going out it didn’t matter and as my mum has to go upstairs to get my changes of clothes for me I am not, and would not complain about these combinations. Today’s was quite spectacular, two wonderfully clashing patterns and colours made me rather giggle to myself. What do you think??

I can’t say that I’m the height of fashion at the best of times, I’ve always rather been comfy and had my own style than wear something just because fashion dictates. These delightfully funny clashes however will firmly plant me in the eccentric person category rather than chic en vogue, and the sniggers will be aimed towards me!! However I have to say on this one I will be joining in!!!

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.

 

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!!

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!!!