Living with chronic pain and other symptoms that are both exhausting and unpredictable is not something that I would wish upon anyone. But it is the life that I live on a daily basis. It’s the uncertainty of how you might feel when you wake up every day that is the difficult part. I never imagined my adult life to be like this, and I’ve now had to throw into that mix becoming a single mother this year, which of course has made things even harder.
So today I wanted to put across to the community the ways in which I still try to be the best parent I can be, despite my condition and despite the obstacles in my way.
To look at me I certainly don’t look “sickly” but on bad days people can tell that I am in pain, and I think that’s possibly the worst thing when you meet with people, when you’re trying to explain about having a chronic condition. Most people just don’t get it, and I don’t honestly expect them to because we are all affected by pains differently. But what I do want is for people to be more sympathetic and not pile on the mum guilt, we are all trying to raise our children the best ways that we can, and that’s what is important. That the child in question is loved and cared for, that is the main aim for all of us. My son is thriving even if some days I certainly am not.
Some days I’m so exhausted I struggle to do the most basic of things around my house, but one thing that I always make sure is that my son is clean and fed and looked after. I ensure that he has everything that he needs, every single day. On my good days with minimal pain things like washing clothes and housework and playing on the floor are easy and no trouble, but when I feel unwell I often have to prioritise what needs to be done and what can wait a day or two. I also have to have backup options in case I cannot get down on the floor and build block towers. We do lots of books most days which is good and easy and can be done whilst sitting comfortably on the sofa.
My son is at that awkward toddler age when you aren’t quite sure how much he understands you. On really bad days I have to try and explain that ‘mummy is hurting’ and ‘mummy needs a rest’ sometimes. At 32 I never thought life would be like this, but this is my normal and I have had to come to terms with it. Luckily most days my son is a very good boy.
There are many things I do in order to help myself keep ticking over. Pain can affect my memory sometimes too, so I often rely on calendars and such. Some people think that making lists and having a writable weekly planner is a thing of the past, but for me, they’re an essential part of my day. I also don’t like doing every single thing on my phone. On my weekly planner, I will plan our week of evening meals, appointments, video calls and specific day time activities. The evening meals are definitely an important part of my week, mainly because of my son’s allergies, I need to ensure he is getting the right ratio of food throughout the week and by planning ahead it takes some of the guesswork out of it. It also allows me to perhaps cook something in the oven, like a casserole, on days when I cannot physically stand around chopping and cooking from scratch.
Other things on my planners include Baby and Toddler Group sessions on Microsoft Teams, Video Calls with Family who I don’t see and haven’t seen (some now for over a year which is hard in itself) in ages but thank goodness for technology allowing that to happen. And I also try and plan some of our routines into my day too. Sometimes pain or other symptoms can stop me from leaving the house, so I need a plan for those types of scenarios. I need things to keep my son busy and safe while I may need to leave the room to take pain medication, and such. I really don’t like too much screen time and if he has already had a couple of hours I am really reluctant to put the television on again. So by writing down any ideas I may come up with on my planner I can work up to some of those each week and change it up so that we aren’t doing the same activities every single day.
Another thing that I have which is a huge help is storage solutions. These allow me to do an easy tidy up of toys and books so that my space is not a hazard for tripping over and also far easier to clean as well. I don’t know what I would do if my son didn’t help me to tidy up on bad days. I often ask him nicely and he will do it with me, but if I’m in pain and he is being difficult I usually turn the tidy up into a game and manage to get him to participate without much agro.
Staying active is an important part of staying well too, and throughout this Pandemic and several lockdowns, I have struggled to get enough exercise. Luckily my son is now old enough to hold my hand and go for short walks with me. Jumping up and down in muddy puddles is also a favourite activity of his, and I can happily walk gently with him and hold on to his hand whilst he burns off some toddler energy on these autumnal weather days.
Setting alarms on my phone to remind me about certain times of day is also useful. I find that time can get away from me some days and routine is really important. It’s not something that you can control all of the while, because things happen and day to day activities are different. But overall I do my best to maintain the big things like mealtimes, bath times and bedtimes. Although toddlers tend to have their own agendas some days don’t they!
Another way that I cope with things is by encouraging my son to help me with chores when he takes an interest. Toddlers seem to either want to be with you whatever you’re doing, or they want nothing to do with what you’re showing them. So when my son does take an interest I do get him to help. This is usually with things like moving wet washing from the machine to the basket, and then to either outside with pegs or into the tumble drier. Not only does it take some strain off me by having him assist me, but he also enjoys helping and then I give him lots of praise when the job is completed. I always attempt the ‘learn as you go’ technique as I like to call it too. Reminding him about the differences in Colours, Textures and Objects as we do the chores is a great way of combining learning with play.
The final thing I will talk about is the part where most of us just hate doing, which is the ‘it’s okay to ask for help’ part. I’m lucky that I have moved back to where I grew up and I am close to my parents (both of whom are divorced and live with partners). It’s good that as a single parent I have been able to bubble with their households, so that if I ever needed their help they could come to my aid. Don’t be afraid to hold your hand up and tell a loved one that you’re struggling, because we are all human and none of us are perfect. Raising children is hard no matter who you are, but knowing that you have support around you when you need it can really take some of the pressure off of you.
If you are going through a difficult time please reach out to loved ones, friends, family members or even your doctor for advice.
