children, Disability, hope, Mama mifsud blog, Me, Perception

My own biggest critic 

I’ve realised lately that I’m a stubborn old goat. I’ve been barely holding it together, but for some reason I find it almost impossible to ask for help. I’ve been thinking a lot about why this is, and I’ve settled on the fact that I don’t want to appear needy, or lose my independence by asking. I have four children, a home to run, and I’m currently doing it all alone, aside from the odd hour when some of the children aren’t here.

The reality is that I have to do it alone, predominantly. People are busy, and can’t be that physically support to me regularly, so I’ve developed some strategies to allow myself to manage a little better. They all revolve around managing my time in small chunks and delegating what I can, even if that costs me money.

Firstly, as I can’t stand for long, I divide my tasks into physical and mental. So things like washing up, washing, cooking cleaning, on one hand, then things like paying bills, filling in forms and making calls on the other. I can’t do more than a few minutes of physical at once so I’ve started washing up about 6-8 times a day, little and often. I get as much done as I can before the pain takes me. Then I sit and do a mental task. The same goes with my toddler, I divide our time into physically demanding play and things like puzzles and drawing or shop keepers where I can be less physically active.

I do find this helps to manage my pain levels, but I will admit by bedtime most days I want to cry. It’s mentally and emotionally challenging keeping pain locked away from your children. Whereas before if I needed to take five minutes, i could, now I can’t. They all won’t let me out of their sight, for fear I will also disappear, and I can’t let them see my pain, when they have been privy to enough emotional upset in the last few months. I don’t really tell anyone how much pain I’m in, I just say I’m plodding on and managing, and that’s a problem. I don’t want anyone to think that I’m not coping, or that I’m a bad mum, or that I was stupid to think I could do this alone. Admitting I’m sore , to me feels like admitting I’m failing at the path I’ve set myself on.

I’ve sat down and written detailed financial information out and scraped out some funds each week to cover three extra hours of childcare, so I don’t have the guilt of asking for babysitters. This time lets me sleep and rest, something that has been off my radar for months as I haven’t had the time, what with dealing with our family and the extra work created by a marriage breakdown. I go to bed at 8:30 every night once my youngest are settled, I don’t have the energy to do anymore. I occasionally have friends over to give me the brain break, but my body always struggles the next day.

It’s relentless. My youngest wakes between 5-6 and my oldest is at college so I am in mum mode for all but 6 hours a day. They all need extra emotional support at the moment and I am working my butt off to provide it for them, on top of doing 100% of the childcare and running of the family. I don’t think I’ve ever felt so alone. The weird thing is though, I’m happy. I am doing it. I am surviving, and trying to move from survival mode into normality, with or without the input of anyone else. I have bitten the bullet and decided to employ a cleaner a couple of hours a week, again to remove the guilt of asking for help, I’ll get it, but in a manner than doesn’t add to my emotional burden.

Things have changed for the kids too. We are a better team and have all signed a contract agreeing to work better together for the greater good of our home and family. Everyone must pull their weight and chip in with the workload to help me remain standing. This only means half an hour of jobs a day each, but this takes the pressure off me and gives me back ten and half hours a week, which I can use to spend time with them, or doing low impact things. The brutal truth is, if I continue going the way I have been, I will end up in hospital and everything will fall apart. There is no way in hell I will allow that to happen. I am not superhuman. I’m doing the best I can. Constantly reflecting on how I am managing, streamlining even more, my precious time and energy, focusing on the children’s welfare and needs.

I am trying to begin to think about myself, and my needs, but when you have four humans that always must come above any illness or sadness you are going through, it’s not as simple as ‘put yourself first’. They need me, and I don’t have the luxury of being too ill to cope with them. I have to keep going and find a way. My stills disease is a fierce beast, and I’ve yet to meet someone who has it, that isn’t fierce  themselves.. We call it the dragon for a very good reason, and often me and fellow suffers become the dragon we are fighting. We don’t want to admit defeat, or accept losses, we never want to let the dragon win, and sometimes that is to our own detriment.

I sometimes need help, and its fine to admit that.

This can be a phone call, giving me a pep talk, or a friend with a bottle of prosecco, or someone to keep me company as I deal with the crazy hard stuff I’m going through, just being there, as moral support. Half the time those people probably don’t feel they are doing anything, but in fact it’s everything. I may be terrible at asking for it, but I am overwhelmed with love and support if I need it, I just have to be brave and ask, and get over myself already. I’m not a bad mum if I say I need a night off, I’m not a failure as a person if I admit sometimes I’m not coping. I am a ruddy human being, and I need to stop setting myself such ridiculously high standards, that I can never reach.

Maybe there is a lesson there, chronic illness or not, relationship breakdown or not. It’s fine to say ‘this is hard’ or reflect on what you can change to make things work better. I by no means have it sorted, but I’m getting there, navigating my fierce independence alongside my complex health needs. In reality it’s just another part of my journey, less mental health more physical health, this time.

I am doing it.

I am getting there.

I am still learning my limits and how to allow myself to get help without compromising too much. It’s all part of life’s rich tapestry, and I’m still finding depths of my character I didn’t know existed, even after almost forty years on this earth. God do I value the little things, a smile from a stranger, a friends kind words, the freedom of an hour gliding on the water in the darkness.

You can’t experience the light without the dark.

Just know you are not a failure if you need a little help to reach for the light again.

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