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!!!

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