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!!!

Feeling hot!!!

I couldn’t decide the topic for my post today, yesterday I’d gone through the internal battle I have when I buy anything so thought I’d share that but when I came to start to write an overwhelming force took hold and so today I’m going to write about that instead. I shall save my purchases until they come to share. 

So what was this overwhelming force?? P.O.T.S is what. Postural Orthostatic Tachycardia. This hot streak has set off a chain of events that turn doing any small task into a marathon, and a task that others don’t think about like opening the front door into a lottery of whether I can get there and back without passing out. Now don’t get me wrong I love the summer, I prefer sunny days to rainy ones and the lovely blue sky is far nicer than a grey one. However this hot snap has made my P.O.T.S really flare and so I now constantly feel like I’m on a ship and the travel/sea sickness that goes along with that feeling is anything but fun. My brain, which normally isn’t exactly mensa standard, is complete mush and forming a coherent sentence is nearly impossible. For anyone who doesn’t know P.O.T.S causes your pulse rate to soar way above normal and can increase by over 30 beats per minute from laying to standing. This can cause near fainting or fainting and a list of other symptoms that mean that instead of being outside enjoying the weather like “normal” people I am instead lead out on the couch trying my hardest to keep cool and debating whether it is really bad to add salt to a cheese and coleslaw sandwich  (as you’re supposed to up your salt intake to help)!!! 

I can’t say that I’m managing very well with trying to keep my symptoms at bay. I am trying to work out if it’s essential or frivolous to buy an extra fan for downstairs and if I can actually justify the money anyway. All this while trying to cope with a brain that doesn’t want to switch on, and a craving for ice-cream that won’t be sated with what we have in the house!!! So I have as much as I can to hand so I don’t have to move, I am drinking so much I must slosh and my brain will just have to remain a fog until the heat passes!!

You wait a whole year for a blog post and two come along at once!!

When I wrote earlier I didn’t expect to be writing again so soon………but here I am!!! I forgot when I posted that although I’m geeky in many ways  (liking Star Trek and sci-fi ) I forgot that ─Ćoesnt extend to technology.  My total ineptitude when it comes to technology lead to me merrily sharing away hoping to get someone to read my musings but having not published it properly and despite adding a link to the post no one could see it. A lot of head scratching and downloading the WordPress app and I found my long post happily sitting there waiting to be published!!! Doh!!! 

Anyways so I decided to then decopatch the box that I’ve had sat waiting for months to do. I got all the things out and started, forgetting that as it’s a hot day sitting upright leads to POTS symptoms. Also doing anything like this takes a lot out of me and my hands and my shoulders allowed me to do the lid and no more. I’m now lead out on the sofa waiting for my symptoms to subside……… of the many many downsides of EDS, POTS, fatigue, Carpal tunnel syndrome and long term conditions like them!!! 

Hopefully I’ll actually publish this post correctly!!!

Is there anybody out there??

After trying and failing a couple of times now I am again hoping to make this work.  I feel deflated that no one read my previous posts but lets hope!!

Anyway I have thought long and hard about what topics to cover especially in my first few posts, I thought about doing an A to Z of my symptoms and how they affect me, I thought that it might be good to review my equipment (the bits that dad has allowed) or that my fun with getting support or housing or my on going medical dramas may be good.  But much as I can write about them I decided that for this first one at least, and maybe the first few, I would just explain about where I am in my life and what is going on.  That way hopefully some of you might get interested!!!

So this is me, I’m 38 and have Hypermobility EDS.  I also have an underactive thyroid, PCOS, POTS, Fibromyalgia, Carpel Tunnel and chronic Tendinitis in both wrists, Arthritis and I have just had my Gallbladder removed.  As if this wasn’t enough I have a number of other issues which I am sure will come out over the course of me writing but all of which have also meant that I have suffered with Depression and Anxiety for longer than I can recall clearly!!

Day to day it is hard, as anyone living with a long term condition knows, I currently live at home with my parents as my mum is my main carer and who I can’t be without.  I am on the council list but after over 4 years on the list the two places I’ve been shown were totally wrong for me as they weren’t accessible, but I shall save that for another post.

I hope that my first post again hasn’t bored anyone that reads it, but for now I shall sign off with a hope that someone reads this and that those who do have a good and pain free day!!