Yet more appointments and the funny places your mind goes in the middle of the night!!

This past week or so, has again had a number of appointments in it and yet again has been stressful. Dad is still off (as it’s now half term), and still can’t hear and the reason I was feeling ill was I had yet another chest infection. Since being diagnosed with asthma more years ago than I care to remember I have had at least one chest infection, and usually a couple of sinus infections thrown in there somewhere, a year. My body must’ve decided that this year I would start early with it!! But back to appointments, I had my GP again and was really debating with myself if it was worth mentioning my sensory overloads. I’m so glad I did though because she was so supportive, she’s going to find out who to refer me to and so I may get some answers finally to the questions I’ve had for so long about myself and why I find so many things so difficult. I’m also glad I did because in the next appointment I was waiting for I started to go into sensory overload again, I did manage to just about hold it together but if I hadn’t already been having the overloads and so had my MP3 player and fiddle cube with me I would have had to leave. My GP has also managed to move my urology appointment forward so I am going to hopefully get on the waiting list for my supra-pubic catheter, fingers crossed anyway! My last appointment was with my extended scope doctor about my POTS. She’s been very supportive too and thinks that it’s worth trying to get formal diagnosis for my POTS, she thinks that it’s definitely what it is but I need to go to first see a cardiologist and then probably be referred to one of the London clinics. This condition has so few specialists (as with most of my other conditions too) so my nearest ones are the ones in London. I don’t know how I’ll get to them and how I’ll cope with all the travel, sensory problems and just the anxiety I get about going to somewhere like London but hey again I may well get some answers!! So although the appointments were very difficult for me, I think that they were at least productive.

So onto my ramblings from the middle of the night! Being an insomniac for a number of years now I’ve had many many nights of quiet thoughts and last night as with so many of these my mind was wandering into some funny thoughts!! I always watch my DVD’s and always am sat with my coffee (no it doesn’t actually affect me, I can fall asleep 5, 10 or anytime after having had a caffeinated drink like coffee) playing games on my tablet, which again doesn’t affect my sleep and often actually drop off to sleep while playing the game!! But what I’ve noticed most I think in the years is all the thoughts that your mind goes to in the small hours, it’s always quieter and so if you aren’t careful your mind can go off into a dark thought process. It can just listen to those negative thoughts and often yes my head is in that place, the I’m up and everyone else is asleep place of thinking about the reasons you are up. Thinking about the pain that you are in or the lonely thoughts that you are alone when you are awake and alone when you are asleep. It can go to very very dark places, it’s hard to stop these thoughts in the mornings when you are tired and cold and wrapped up in a blanket watching DVD box sets and wondering where your life is going. However there are nights where, however bizarrely, your brain wonders off into the realms of weirdness. It comes up with thoughts that you have no clue where they came from or why, and you think that maybe your thoughts are the stand-up show you never wanted to do or the speech that you don’t need! But they are there and they have no cause but are funny and so I thought I’d share just a couple with you. Remember that I am disabled so some of the things if they seem insensitive etc I’m poking fun at myself, not others and they are just funny thoughts from the middle of the night.

So, are disabled parking bays larger because they think that disabled people can’t park? Because I don’t need a bigger parking bay, what I do need is space in between the parking bays. I need to be able to open my door completely so that I can swing my legs out of the car and get into my wheelchair without scraping the car next to me. So what we actually need is parking bay with the yellow hatch markings either side (not one side like some are) to enable us to get out. Now I will admit I’ve seen some amazingly bad parking from disabled people, I once saw someone parking almost completely sideways in a bay however bad parking is definitely not limited to disabled people. Yes disabled people often have larger cars to accommodate our wheelchairs, however usually it is the length that we need increased rather than width. You see if you have a bigger bay but not the space either side of the bay then someone can park wherever they like within that bay, you can park right up to the white line so that the next person cannot get out of their car unless they park right across the other side of the bay. It becomes a circle that means that someway one person will not be able to get out of their car. So again I ask are disabled parking bays bigger because they think that disabled people can’t park?

The next thought was “Why can people not think outside the box when it comes to wheelchairs?” Whenever I go for appointments I book in and am asked to “take a seat”, now I can never come up with a retort for this when it happens however I already am in a seat!! I cannot “take” a seat unless I get out of my chair and into one of theirs, which is far more uncomfortable for me!! Now it’s not that I mind, I am used to people not knowing what to say to me or being comfortable knowing what language to use, however what I do mind is that 9.9 times out of 10 when they ask you to “take a seat” there is nowhere that I can park my wheelchair/scooter that I’m not either in the way, stranded in the middle of the room or parked somewhere where I cannot talk to the person I’m with. So it’s not the language I mind, more that there has been no thought whatsoever about disabled people’s needs. The doctors for example, I spend a LOT of my time in and out of doctors and hospitals and when I go there are rows of seating all neatly laid out. There are tables sometimes and some have magazines, some don’t, but what they don’t have is a space big enough for a wheelchair to go, they don’t have a place where it is even easy to lift out a couple of chairs (or the seats are joined together) to make a space. So this is what makes the phrase even more ironic, I do not need to “take a seat” but also cannot find a place to wait that is comfortable or where I don’t feel that I’m blocking someone or something.

OK so I know that these thoughts aren’t hilarious, they are funny in the weird way instead and are musings on the state of the world but I thought they were worth sharing. I have these thoughts regularly so should I have any more I will share them with you.

So to end, I told you last time that I had a couple of craft projects that I was finishing. I have now done them!! One is a couple of quick projects which were my crocheted bags, I use T-shirt yarn which crochets up really fast. One of these bags is for my fiddle toys, to keep them together so that if and when I need one I know where they all are and can just choose which one I think will work best. The second one I’m not sure what I am going to use it as, at the moment it has got my notebooks in (my bullet journal, my blog notes and my general notebook) but whether they will stay there I’m not 100% sure yet!! What do you think?

The last one is I finally finished my little giraffe, my niece has nabbed it as she liked it. This was fun as I haven’t done a lot of crocheting for a while so enjoyed getting back to it. I have (as with most things) slightly altered my style so that it is easier on my fingers and I have to do it in short stints but I’m pleased with the outcome, especially because the pattern was completely wrong in one part! But I figured it out! These piccies were taken by my sister as silly me gave it away before I’d photographed it!!!

So what do you think of these crafty projects? Can you guess what I’m going to be working on next? What about funny thoughts, do you have them? Share them with me and others we can either laugh, roll our eyes or just simply sympathise with each other on them. So let me know and until next time I hope you have some happy or funny thoughts of your own.


13 thoughts on “Yet more appointments and the funny places your mind goes in the middle of the night!!

  1. When you walk with crutches but no plaster cast etc and you constantly get asked “did you break your leg”? And when u tell the person that no but you have MS – they don’t know what to say.

    Too many people ask “you are so lucky to be able to park right by the shop/hospital etc entrance! Lucky!? So being disabled is lucky is it.

    When you need the disabled toilet facilities but there are teenage scrotes/tarts in there giggling or some adult that is too lazy to walk another 3 feet. Get out of the disabled loos!!!!!!

    Nobody pretends to be disabled 24/7, but some disabilities are not obvious and/or they change in intensity from day to day so please be mindful of this. And never talk over someone in a wheelchair as that is just plain rudeness.

    1. Definitely true, I am constantly being told that it’s lucky to park so close, yes I love it it’s so fun I love having to drive everywhere and yes love getting my wheelchair out and not being able to afford a mobility car and wheelchair that meets my needs!!!

  2. When you can’t turn your brain off in the middle of the night it can be so stressful. I am usually unable to sleep until l 2am and I have to be up at 6 with the kids. I gotten used to it at this point. luckily the nature of my work is such that I can use this time to communicate with people across the world and work etc. but I usually have an energy drop in the middle of the day. I hope you get to London and find the answers you need soon.
    I love your crafts! the bags are amazing – I made rugs and baskets before but never bags. and I’m crazy about your dolls.

  3. Cutest. Animal. Yet.

    I think the night induces those negative rambling cycles because there is very little unexpected to interrupt us. Have you tried Melatonin to drift off to sleep? I have a 6YO who really relies on it at this point to get enough sleep for school.

  4. Firstly, oh my gosh that giraffe is so cute!! And I can totally relate with the strange/dark thoughts in the night. I’m on medication that makes it difficult for me to get to sleep sometimes and it can be so lonely when you’re the only one awake. One thing that really boils my blood is when people make digs about you being lucky that you can’t work!! AS IF. If I was well enough to work 5 days a week I would be over the moon and work my ass off.
    Alice Xx

  5. I can understand your frustration since I used to homeschool two twin girls, one of them had a disability but she was definitely brilliant!It was painful to watch the mother having to pick up and carry her across the street to the room we used because there was no rail for the wheelchair. I have to say though that judging from your craft projects you have a great potential and are very talented with yarn!I adored your owl I saw in another post!You should sell them online!

  6. Wow!!! You are so talented. You are my new hero ❤ I hope you sell your crafts at some point I would be first in line. I hope you keeping finding the strength on the hard days. I love your writing. Sometimes I forget to comment charge it to my head and not the heart.

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