Wow a fairly successful family outing!!

Yesterday, wanting to make the most of the nice weather, we decided to go out again as a family.  This time we had settled on somewhere we have been a number of times before, Pulborough Brooks which is an RSPB run place, this is usually a good bet because we know what I can and can’t manage. It’s not too far from us which is a bonus for a couple of reasons, firstly because travel for me is rather painful and secondly since my niece has become taller and Skoda made the back seats of their cars smaller we all struggle to fit in the car (I cannot afford a mobility car and we cannot get a larger family car either). Another huge bonus with Pulborough Brooks is that they have an off-road scooter to hire, which means that I can mainly join in and I can get around without worrying that I can’t manage the terrain. We phoned up on the day so I was a bit worried that this wouldn’t be available as usually we give 24-48 hours notice, but shock of all shocks (for us anyway) was that it was available and we could borrow it!! So we all went off crammed into the car, well those in the back seat are which I always feel guilty about because I can’t cope in the back (and at my size unfortunately it would be even more cramped). We had lunch first which came with a wonderful view and lots of little sparrows…..

The scooter was so good to have and although there weren’t many birds about we had a good time. The only downside for me was I needed my emergency kit (will be posting about this really soon as it’s becoming an essential piece of kit for me). I needed it before we got back but faced with a compost loo or a wait until we were back at the start was for me no contest, I waited  (using a compost loo once in my life on a school trip to the centre for alternative technology was once too many, I like my comfort I just don’t do anything like that!!) mum managed in the toilet like a trooper to help me change etc. It’s an unfortunate but increasingly common need for me. We then managed a sneaky ice cream before going home (shhhh if you don’t tell anyone it won’t have had any calories in it)

So for once a family trip didn’t end with arguments or disappointment. We enjoyed the day and I participated as much as I could (the hides really aren’t negotiable by me in an extra large scooter so someone waited with me outside while my niece went in to see what she could spot) RSPB Pulborough Brooks was a good trip out for us. 

Some photos of the day……

Have you got any go to places that you enjoy as a family??

The unspeakable problem!!

I know it’s not something that most people talk about and there is a reason for that but today I want to talk incontinence. It’s not talked about because it is embarrassing, it’s not interesting and it’s not something that you want most people to know about.  It’s not something that you can just chat about with friends but when, like me, you have it you can’t just forget about it. So I’ve decided to be open with some of my struggles with it in the hope that at least one other person reads it and realises that they aren’t alone. I’ve got separate diagnoses for this, I’ve got mixed urinary incontinence functional incontinence and nocturia. What does that mean?? To be honest not 100% sure and to me it doesn’t matter. What does matter is that I don’t get the normal urge to go to the toilet, my body doesn’t tell me that I just need to go to the loo instead it waits and only tells me when I’m absolutely bursting to go and this means that by the time I get to the toilet I’ve already started to go. As discussed before I have a big problem with staying asleep, but if I did stay asleep I’d be waking up needing to go and the same problem then happens in that I can’t get there in time. I have seen urologists, specialist physiotherapists and had tablets, exercises and even stimulation none of which has worked. I now have an incontinence nurse who prescribes pads. 

The biggest problem with pads is none are fit for my needs, well none that we’ve found. I either leak meaning I’m having to change clothes 3 or 4 times a day, or they’re uncomfortable or both. The new ones I’ve had from the nurse didn’t stick, and my niece wondered what was in my trousers. I think that the bigger pads are designed for older bed bound people not people like me. Sensory wise I hate having to wear pads and with having to change all the time so my GP and I agreed that something more long term is needed and so we’re looking into the possibility of full time catheters. It’s testament to the fact that I am at the end of my tether with this because I hate hospitals and the thought of another op fills me with dread, but I can simply not go on like I am. So it’s another waiting game, seeing if and who will consider me and then which sort of catheter I might be able to have. Who knows. But for this and future posts about this the unspeakable problem is becoming speakable, I’m not saying it’s not embarrassing but it shouldn’t be hidden away. We can’t help it, it’s our bodies having some sort of problem. Mine is my wonky body not working correctly again. 

So it’s onto the next stage for me, urology for possible catheters. More questions for now to then hopefully sort out my unspeakable problem!!! 

Eurgh look at the range, not the height of comfort or fashion in any way shape or form!!! (And these aren’t the worst!!) Pads are for illustration only and aren’t nearly as bad as my actual pads!!!

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 – 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

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!!!

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……..