What little things make your life easier?
Wow. There are so many little things that I never thought could make such a big difference in my ability to cope with my chronic collection. Things that I didn’t used to have that I could no longer imagine getting by without, people I did not know would become so essential to my day to day life. So the little things that help me can be divided into three sections, equipment, technology and people.
Firstly equipment. Since I’ve been ill I have realised how much equipment is there is out there that is made to help people with chronic illnesses. I also had no idea just how helpful most of it could be.
There’s mobility equipment, firstly my crutches, they were the first things to give me my mobility back, when my legs were weak before my arms went. Then there was my wheelchair that allowed me to have a life when I would otherwise have been completely housebound. Things I used to look at as signs of failure soon morphed into objects of freedom and independence. Finally there is my fold up walking stick that is in my bag wherever I go, once again this was once stuck in my mind as “something for old people” but it’s bright, funky and hidden when I’m not using it.
There’s equipment in my home that helps me, but, sadly, because I am often ashamed of having to use it, I mostly hide it when people come round. But, because I promised to be honest, and however embarrassed I am, however difficult I find this I AM going to be honest, I AM going to list the equipment I have and use and I am *deep breath* going to put aside my shame (unwarranted though it may be) and hope I raise some awareness about how debilitating my chronic collection can be.
Let’s start with the easier stuff. I have special light weight cuterly and special grips to help me hold them. This allows me to feed myself more easily without as much exhaustion and pain. I have a “hotcup kettle” that despenses small amounts of hot water at a time, along with many cups with lids and thermo lining this allows me to make tea (with assistance) and drink it when it is not stone cold. I have a perch in my kitchen that allows me (although rarely now as it still involves some level of weight baring on my legs) to do bits and bobs in my kitchen when I am well enough, without having to stand.
I have a hand rail going up the stairs (I don’t have funds for a stair lift) although I mostly go up and down stairs on my butt. I also have grab rails in the shower bath to help me to sit up from laying down, there’s a second to allow me to stand and get in and out but that’s been beyond my use for a while now.
I have a bath lift, the one I have now is amazing, it is basically a giant bath pillow. It begins as flat seat, you pump it up and it becomes a solid seat that you can then sit on and turn to put your legs in the bath. You slowly deflate it and you can lay back in the bath, you can completely deflate it too, so you can be as submerged as a “normal” person. When you want to get out you simply reinflate it and it slowly brings you back into a sitting position and allows you to turn to get out of the bath. You can do it as slowly and quickly as you like to allow adjustment time for things like dizziness and crazy heart rates. I LOVE my bath lift (although it is one of the things I have a tendency to hide) because it means I can get myself in and out of the bath. Okay so, I still need help physically washing and Chris still has to be in the room because I have a nasty habit of passing out in warm environments, but I can do the in and out routine by myself! Also in the bathroom I have a toilet frame, this is something that I would love to hide from the world but also something I cannot as I depend upon it to get onto and off of the toilet *bleugh*. Not a peice of equipment I am proud to have to own but it DOES make a massive difference to my day to day life, it was also incredibly useful for Wildchild to climb on and off the toilet!
Ok, so my bedroom. Let’s start with the least embarrassing bits of equipment. I have a special mattress that helps to take the pressure off of my joints, it’s like sleeping on a cloud and doesn’t look any different from a normal mattress (bonus). I also have a bed guard, which yes, is there to prevent me from falling out of bed and help me to get in and out of bed, but it’s also pretty funky as it has compartments for magazines and such (or iPads, kindles and phones) it also worked a treat when Wildchild would sleep with us! I have a nebuliser that is constantly on my bedside table for when my peak flow drops enough, which tends to happen in the middle of the night. In my wardrobe is a filing cabinet (what? That’s not where you keep yours?) it’s small for a filing cabinet but the only lockable place I could keep my medication and sharps bin (which was vital when Wildchild was younger). Okay… *deep breath*….. *REALLY deep breath* this is the one that I am, full blown ASHAMED of having, the one I never wanted and I would do anything to not require but, nonetheless I have to admit it is useful, probably more for Chris which is the sole reason I agreed to one when it was offered to me. I, at the grand age of 32, have, a, commode *mega cringe*. I hate it and I mean I HATE it. But, and here is the big thing, it is useful. Before I had it Chris was working full time, caring for me when he wasn’t at work, already getting up at 5am with Wildchild and then, because of my pride, having to help/carry me to the toilet multiple times a night (on top of getting me meds and food to allow me to take meds when needed). My pride was utterly selfish and, as the sick one, I should be doing my utmost to relieve Chris of any extra pressure he is put under by being my carer. That said, if I am well enough to get myself to the toilet (by any means necessary, up to and including crawling or bum-shuffling) I will do that before I consider using “that thing”. But I am trying to make life easier for him, my pride has taken the hit and now I’ve accepted it and am being honest about having one and (occasionally using it) so that’s a double whammy to the silence and shame that these diseases bring with them *take that chronic illness*. I’m also in the process of having call line installed in my house through a referral to the “falls prevention team” it seems full on hitting the deck 3-4 times a week is a little more falling than is ideal, but I’m sure that’s a story for another day.
Right *finishes cringing* onto technology. Ah, I LOVE technology, the advances in it even since I got sick have allowed me to have so much more of a life now that when I was last this ill, it’s only been a decade.
My phone. I don’t know what I would do without it, it is, quite literally my lifeline to the world. When you spend so much time housebound when bigger screens are too hard to deal with and sitting up is a struggle in itself, phones. It allows me access to the world outside my home, it provides me with support, amazing friendships and allows me to work when there is no way I could do so otherwise. I used to read all of the time, and now I can’t, my phone is my link to my love of books. Through websites like “listening books” I have access to audiobooks so I can still live in fictional worlds without having to physically read (btw if you have a chronic, long term health condition that prevents you from reading and are in the UK check out the site as it allows you access to almost unlimited audiobooks for £20 a year). Come to think of it the only thing my phone is rarely used for is making phone calls! This blog would not be possible without my phone as sitting on a computer to write it is beyond me.
My iPad, this is my saving grace with my daughter, well using another technological aid it is anyway. Thanks to chrome cast I can have precious time in my bed with Wildchild, snuggling, chatting and watching little bits of tv together, cast onto the TV in my room through my iPad (or the old one she has gifted from my mum). When I’m not strong enough Wildchild can even operate it! We also learn about things together, googling and youtubing things we want to learn about. Speaking of learning, I have learnt to sew, crochet and even hula hoop (in my better days) through you tube, through my iPad.
That’s enough about technology, because, trust me I could go on forever about that. So into people, I didn’t realise that I could allow myself to depend upon people as much as I do, or how helpful it would be to let myself. Between Chris and my dad I have 24/7 care. My mum helps with Wildchild and so does my sister when she’s down (she lives an hour away now, if you’re reading this move home already!). Friends that I can talk to on the internet when I’m having a rough time, any time of the day or night. My best friend who I know, despite her own chronic collection and other problems she faces would drop anything at a moments notice if I needed her. The mum friends at Wildchilds school who help me when I can’t get to or from school during school runs. The teachers at her school that are so supportive. My church family that look after me, watch over me and pray for me. Even the medical teams, physio, chiro, gps, social care, falls prevention, my awesome pharmacist, they have all made my life that little bit easier.
And finally, my biggest little thing, the one that, solely, on her owns gives me the strength, love and will to live I need everyday. She makes me laugh, smile and gives THE BEST cuddles ever. My Wildchild, my love, my light, my little reason.
The photo below is from the #millionsmissing protest. About how I am missing from society, from life, I’m missing being a person, I’m missing being the wife I want to be, the mother I want to be (hence Wildchild walking into the distance). But thanks to Wildchild I am not missing being a mother, she’s my miracle and my entire world! And, most definitely my very biggest “little thing”.
My Life in Spoons. 