I am often asked why I have trouble doing things that other people can do. It is not a malicious question but a curious one. For the most part, I have invisible disability and the answer isn’t obvious or self-explanatory. I was asked again this week why I use a touch screen to control the TV, what issue do I have that makes using a remote difficult?
I do my best to answer questions like this with accuracy and brevity. The answer to this one is a relatively simple one.
Proprioception is permanently impaired in those with EDS. I can’t tell exactly where I am in space unless I use my eyes and make a conscious effort. As a result, I cannot control my grip very well, so I have a tendency to either drop things or squish things or both. Read the rest of this entry »
I am busy writing a user and instruction manual that travels with my 3 year old when she has a sleepover. Things always look scarier on paper when documents talk about lower gastrointestinal bleeding, breathing issues, joint dislocations, night terrors, medication lists and what to do if things go a little wrong and not to panic if they go spectacularly wrong.
It isn’t something I worry about, things going wrong, but it’s better to give too much information than not enough and I prefer everyone being in the loop. She was over a year old before we let her stay over anywhere for a night, mostly because she dislocated her shoulder and nobody other than me could get it back in. As she grew, she learned and I taught her, how to do it herself.
I have been worrying about a lot of things and dealing with a lot of things lately and life hasn’t been easy. I am only now starting to get more than 3 hours sleep in 24 after over a month of sleep deprivation and although I am getting more opportunity to sleep, I’m still pretty wasted and it shows in chronic forgetfulness and absent-mindedness.
I am working really hard to gain access to a Personal Health Budget. It has been rather an uphill battle with many obstacles, delays and much negativity surrounding the whole process. Wiltshire CCG, despite having no written policies and procedures to support their position, are insisting that I can only spend my personal health budget on items and support approved by a clinical assessment and that meet an identified health need for myself.
My Sunday started ten minutes early with a piercing scream coming from the little one’s bedroom. “I have a tummy ache, I have a tummy ache, Mummy, it hurts!” She was clutching her stomach, curling, kicking and screaming. Then she threw herself out of bed and paced up and down. “Don’t touch me. Don’t touch me!”
Chris woke up first, raced to her room, saw blood on her pants and her sheets, raced back to our room (thumb we hear as she launched herself out of her raised bed), got me out of bed and helped me over to her room (still having some ankle issues from the fall down the stairs and it just gives out, particularly after long periods of not moving). I collapsed on the floor and he went back to bed, knowing the second shift would be his.
An hour later and she was still screaming, still pacing, kicking and flailing and still wouldn’t let me touch her. My ears were ringing and I couldn’t hear her very well anymore. Tinnitus combined with piercing screams at close proximity rather dulls the hearing. She’s been unwell all month, meaning none of us has slept much all month and I could feel it in every muscle ache, strain and pain. My head was pounding, I’ve had a migraine for 13 days and I am coming off back-to-back two Fentanyl patches with some withdrawal symptoms. I lay down on the cold floor and waited, constantly coaxing, aiming to get her calmed down.
At 2 a.m. she was still screaming, but now, too tired to walk, her ankle subluxed, her knee hyperextended and locked into place and she fell with a thump. The screaming intensified. Chris came running. She finally let me touch her. Read the rest of this entry »
Most mornings there are 15 minutes to play after getting dressed and before leaving the house. Supergirl chooses what happens in those 15 minutes. This time, she chose a train ride. The train was assembled, see below, and everyone hurried to find a seat in the front “because that’s the best place to sit”. The driver with her train driver hat sat down, started the train and then oh, dear, oh no! Eeyore started to feel sick. Read the rest of this entry »
NHS England declares that softer toilet tissue “is not fundable unless a clinical assessment identifies this as a requirement” on a PHB
I have been very excited and positive by the governments new approach to NHS care that allow continuing health care funding to be allocated in the form of a Personal Health Budget. The official documentation reads like a dream come true for many living with long-term conditions and disability, including myself and I couldn’t wait to be part of this new brave adventure.
As it turns out, the practice is so far removed from the theory that I don’t think the PHBs being implemented on a local level even resembles the PHBs showcased in the documentation. I am not sure if putting this level of personal information in the public domain is a wise move on my part, but I am frustrated, scared, tired, disappointed and worried that this does not just impact me and my family, but others like us who have been sold one thing only to receive something else entirely. Read the rest of this entry »
About a week ago I fell down the stairs. Early morning there was loud crash downstairs, a blood curdling scream and then, through sobbing, the yelling: “Maaaaa-meeee! Maaa-meeee! My ankle isn’t in the right place! My knee isn’t in the right place! Maaaa-meee! My hands hurt and there’s blood coming out of my mouth! Mummy! Mummy! MUMMY!”
I stumbled out of bed as quick as I good, got my foot caught on the duvet, tripped over the pillow I use for knee support lying on the floor, caught my toes in the floorboard and sort of vaulted-crawled to the top of the stairs. I yelled down as I poked my head around the corner.
“Sweet pea, are you okay? Where’s Daddy? DADDY!” I couldn’t see her but I could hear her in the vicinity of the hallway/dining room. She continued crying, yelling and I was sure I could hear the blood in her mouth from her speech.
Chris was in the shower. He did rush out of the shower when the yelling commenced and was now yanking on the bathroom door to no avail. We had put flooring down ourselves with a grant from the Family Fund that paid for materials but not labour cost. Chris did his best doing it himself, but the flooring sticks occasionally when the bathroom door slams shut. Our daughter had scootered into the bathroom door and trapped him inside. Read the rest of this entry »