Posted in Archive, January 2022, September

Day to Day Management

No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday

A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.

Picture of me ready for church wearing my Aspen collar to been help support and straighten my neck

I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.

Off to church. Scarf ‘hiding’ my neck support

My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections

Posted in Archive, December 2021

Waking Up Blank

Staring up at a pair of eyes, a mouth moving above me, making a sound that honestly I don’t quite understand and I don’t like the noise. The light is too bright. I just want to close my eyes and sleep. I like sleep. I’m tired. It’s too loud.

I open my eyes again. The words from above demand it. Ah the eyes have a name. I recognise my partner. Why won’t he let me sleep. The floor is hurting me.

I need sleep.

More noise. I don’t like it. I want to shut my ears. Turn the lights off. Cocoon my body in comfort and warmth. My body doesn’t feel like mine. It’s clumsy and not easy to move. It hurts.

***

When I come round there’s no telling how long it will take before I’m back in the room so to speak. The amnesia affect can last an unnerving amount of time. It often takes multiple conversations before I’ll retain information. So my fiancĂ© will have to repeadedly inform me that I’ve had a seizure. I’ll get upset and he will calmly explain what’s happened. 1) has he had to phone an ambulance 2) what medicines he’s administered 3) how/where I am 4) any obvious dislocations that need addressing 5) ask me (if I’m with it) how I’m feeling and what I need.

I had a bad one the other day. I fell during it and hit my body darn good. Four days on and in still in pain. I came to bed early tonight as I couldn’t bear my leg pain anymore and need to lie down. My neck feels like I’ve been hit by an iron bar.

I’m grateful that they are more controlled in comparison to when they first started. But boy do they hit me something rotten when they happen. Heat bags are my best friend at the moment!

Posted in Archive, January 2021

Disabled Parenting: A Learning Curve

Being a disabled parent is something that three years in I still have not got my head around how to nail. Though does anyone ever nail the toddler years? My children are, at the time of writing, three and 19 months old. Both children are owners of strong, hilarious personalities. Both currently are sound asleep, I know my daughter will wake up in the morning with a rendition of either Baby Shark or Let it go, and my son will wake up just before 6am, delighted that it’s early. I’ll wake up and relocate my knees.

Each day for us is always an unknown to some extent. We try to pace our days by following an activity timetable, which gets switched about at the start of each week. The timetable was introduced not only to help manage with being housebound more due to shielding, but also to encourage subtly paced activities without making it too obvious. The children, know that mummy is disabled and needs to do things differently to daddy, but I do try minimise to some extent how much of that they see.

It is a fine and difficult line to tread. On one hand it is important to me that they understand that everyone is different, some people are disabled and that’s perfectly fine; however my son has a very caring nature, and does worry, so I do try to shield from him some elements that at three he doesn’t need to worry about. For example, right now due to hormones all my joints are loose, this has resulted in multiple subluxes, dislocations, general spasms and fatigue over the day. He’s aware I’m tired today, and slightly sore, but he’s also ‘tickled wrestled’ me, so I know he hasn’t picked up on much.

We made the decision quite a while ago that I would no longer cook with the oven for the family. This was due to a range of issues such as seizure, spasming with a hot pan, or dislocating. My partner does the majority of cooking, and on weeks when he is on late shifts we have carers come in to cook the tea. However I still ‘cook’ I use the phrase very loosely, things using the microwave.Today, was just one of those days that was a dropsy day. Everything I touched seemed to be destined for the floor, which is exactly where the kids porridge ended up after I picked it up to heat it up. My hand spasms were so ridiculous the food had ended up on the floor before I had processed quite what had happened. It reaffirmed to me, that whilst I order the food my place is no longer in the kitchen, and provided the kids with a good few minutes of giggling.

Learning my own hacks to make disabled parenting work for me is something that is a slow learning curve that I am just getting to grips with. For example buying a second seat belt for my wheelchair so I can strap my daughter to me when we go out for a walk. Each day is never the same as we adapt to the needs of my disobedient body and the cheeky duo. The kids never fail to amaze me with how well they cope though. I used to get in a state over the possibility of the fact they had to ‘deal’ with a disabled mum. Whereas now I am so proud of the caring nature the two of them have, along with their inquisitive minds.