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??

Summer days out!!

Firstly I wanted to say that I was totally blown away by your response to my post on “the unspeakable problem”. Far from being unspeakable there was such an outpouring that I was totally in awe of the courage of people out there who, like me are dealing with incontinence everyday/all the time 24/7. People were sharing both with me and each other, I was so humbled by it all. I hope to continue to keep this conversation going by keep sharing with you all my appointments and experiences. I hope that possibly you might like to join me on my journey and if you would, that you might perhaps follow this blog for me. There is no pressure but by following you will get updates so can keep up with the trials and tribulations I will undoubtedly have when I go through whatever treatment I get offered. 

So to today’s blog post, which due to me deciding it was a good idea to do in the middle of the night I have already lost half of!!! Tiredness and phones don’t mix so I deleted a large part of it and couldn’t retrieve it. Moral of the story?? Wait until you’re awake before editing your blog!!!

So anyways we as a family don’t have the best track record with family days out. Whether it’s the weather, arguments, stress and planning something usually happens. Yesterday we decided to go to a pick your own place which isn’t too far away, and yes you guessed it out trip didn’t quite pan out the way we’d planned it!!! Being in a wheelchair usually means that we have to plan very carefully, every detail, we can’t really be spontaneous  (which in my case is a good thing anyway as I cannot cope with last minute plans or changes etc).  We have my 8 year old niece staying with us for 3 days and 2 nights while my sister is at a friend’s wedding. My niece is a fruit fiend, having once had a tantrum in Waitrose not for the usual sweets but instead for an apple, and she’s also an outdoor soul. Great combination we thought for this trip where we could pick some fruit and then have some lunch finishing the day off at the garden centre which is just up the road from the PYO. Hitch no.1 came when we realised 2 days ago that dad had a hospital appointment booked at 11.15am so our morning plan had to change so he could attend. We then decided to go after his appointment, have lunch first then pick the fruit; then afterwards if there was still time we’d go to the garden centre!!! After a fairly successful lunch the family all went off picking and I settled in the sun, with a coffee, to read……

This is the life!!!

But 30 minutes passed when back came the family, with no fruit or veg. The crops were bare!!! No ripe plums or raspberries and so my plan of making jam with our bounty were scuppered and no raspberries for the freezer either. 

So what do you do when you can’t get fruit?? Garden centre for cakes!!!! Lol, ok not healthy but instead of health we went for………..

YUMMY

Hopefully our next trip out will be more successful!!!

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!!  

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

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!!