6am
Husband wakes for work, so I am awake too! He usually works from home at the moment but today has to go on site to do something with computers (this is pretty much how I describe his job to others!).
As with most nights I’ve been woken a few times due to leg cramps so I appreciate the “not properly awake” -ness.
Right on cue Bert Racoon wakes up (sorry if you don’t get the refence to the 1980s cartoon “The Racoons”!).
While trying to calm the human hurricane known as Rosie, I have a drink of water and take my daily pills – Citalopram for anxiety, high level vit D, multi vitamin, Baclofen for my current symptom of stiff legs.
8am
Molly is now up so we have breakfast, watch a bit of TV and I attempt to shower and get dressed. At the moment in lockdown two (or whichever one we are in now) the kids often spend the day in PJs. I just think it’s about choosing your battles right now whether you have an illness or not! Mental health affects us all and my God, children are good at tipping the balance!!
10am
Home-schooling begins.
On days when it’s just me at home, homeschooling is even tougher!
Usually, my husband helps Molly in his office while he is working and I deal with Rosie.
I expect on these days that we’ll be lucky if Molly does just maths OR English independently. Rosie usually gets all her set work done but I can never take my eyes off her! Which is fair enough as she has only just turned 5 😊
Don’t get me wrong – our day is certainly not just nice, calm, learning. I wish it was! The day is full of “I’m not doing school work today!”, “I want a snack!” and “I’m at magic school today, not boring normal school”.
The day is also full of breaking up fights between the sisters, having to constantly go up and down the stairs (which is exhausting with my legs like this) and acting as a diplomat.
12.30pm
We stop for lunch. Rosie and I have left over curry which I had made yesterday. Luckily, I’m not really a fan of spicy food so the curry I make is kid friendly plus Rosie will pretty much eat anything so she is all over it.
Molly however likes her food non challenging so she has her usual cheese sandwich and crisps.
As well as lunch I take my next Baclofen pill.
Since autumn time my legs have become heavy and cramped. I have for many years had the feeling of heavy but weak legs but over the last few months the sensation has got more permanent and increased.
Trying to be positive, at least at the moment there isn’t much pressure on me to have to walk about (with the schools closed and shops largely shut etc) but there is a part of me which blames the lockdown. It’s often said about physical ability that “if you don’t use it you’ll lose it” and I worry that maybe my lack of movement has led to this condition.
2pm
At some point in the day I try to do a bit of housework. This is usually just put the dishwasher on and do a clothes wash. In the good old days, when the girls would go to school, I’d try and do a bit more but now the sole point of housework is to keep from our house being covered in dirty washing and dishes! Around this time I received a call from the Citizens Advice about my recent Personal Independence Payment application. I had informed them of myrecent change in circumstances with my new symptom and am considering reapplying for the benefit.
The Citizens Advice organisation can help me with the new application. However today, and for the foreseeable future, I’m just too busy. Childfree time is not really possible right now.
4.30pm
I start making the children’s dinner at this time. Today it’s a favourite of fish fingers, chips and peas. Easy to make, easy for the girls to eat and best of all they both like it! As I said, pick your battles and make nutritional food which they will eat and not fuss over.
5pm
At this time the children are eating and I get to have a sit down. It’s usually around this time that the fatigue starts kicking in.
Complete exhaustion and the need to sleep. Luckily, it’s also around this time that my husband either gets home or finishes his working from home. It’s so helpful to have someone around who can take over so I can switch off for a while from all the challenges being a parent brings
6pm
After a bath and a story Rosie goes to bed at 7pm. It’s great that both Mum and Dad look after this routine so that the wrestling with a 5-year-old is shared!
7pm
At 7pm Rosie is in bed and Molly can have time with us to chat about the day, watch the news (she loves the news!) and do her school apps. This time is so enjoyable. Molly has grown into a lovely young girl who is such good company. She understands my MS and doesn’t feel resentful that I’m not quite like other mums. This was my biggest fear when she was a baby. Turns out the girls just love their mum as she is. I shouldn’t have worried. I always try to be included in activities such as playgrounds, games and swimming. I never want to be the parent who is too tired to be with them.
Once Molly has gone to bed I have chance to send off an online food shop order (a necessity if the fatigue is bad but even more so in these days of Covid and trying not to be anywhere where a lot of people are)
8pm
Tonight, we are eating a Chinese takeaway for dinner. In these hectic days cooking has sometimes not taken priority. The main way in which I can make a decent meal is by using the slow cooker. The afore mentioned curry was one which I quite often make – a vegetarian fake away korma.
So the rest of the evening is spent with Netflix and my husband.
When you have children, romance is difficult enough but with a chronic illness too everything is even more challenging.
I was diagnosed with MS about 6 months after Colin and I got together, so he has pretty much always known about it.
Despite my difficulties we have a normal relationship and he is very understanding about changes which might be needed for days out and dates.
In these days though the main way we might have a date night is by choosing a new takeaway restaurant and watching a film we’d haven’t seen before!!
10.30
By 10.30 we are both very ready for bed (whether it’s a school night or not!). Only 7 and a half hours until we do it all again!!
The Kids, Me and MS 