“Take care of your body. It’s the only place you have to live.”
One of the things I have came to realise recently is that, through caring for Terri and worrying about everyone else’s needs above my own I had stopped taking care of myself.
In my first counselling session I set my goal as “to look after myself more”, even though all the problems and worries I have are related to those around me. I often focus on others and what would benefit them, more than myself. I would happily go out of my way to do something for my family and friends but then when it came to me needing to do something, I wouldn’t.
I physically can't take my own advice.
My counsellor sat for a while thinking – and said, “but if you don’t look after yourself and something happens to you, how will you help others?” I had never thought about it this way. I just always presumed I was doing the best for those around me. I enjoy making other people happy - but without realising i'd let my own feelings and needs take a back seat.
“It is not the load that breaks you down. It’s the way you carry it.”
I often struggle to talk about what I’m sad, worried or anxious about, this isn’t because I don’t want to tell people – but often, I just don’t know why I feel this way.
Numb.
When I am having a bad day that is how I feel. No emotions, no feeling, nothing. When people ask me what’s wrong. I can’t tell them because I don’t know myself.
Looking after yourself is easier said than done. Where do you find the motivation to improve yourself, when you can’t even find the motivation to get out of bed and get dressed? When you think looking after yourself, what is it you think?
I did some research to see what professionals say that we need in our lives to be happy and healthy. Maslow's Hierarchy of Needs is the best example of an understanding of what, as humans, we need.
It explains what we need to then achieve the next - basic physiological needs - this is the usual eating, sleeping, exercising. Maslow said that if we could achieve these, we could then achieve the next - eventually becoming the most that one can be - happy and content.
So back to me - eating well, exercising and getting enough sleep.
The problems I have with the above, eating well – it isn’t that I don’t want to eat well, because I do. But I just don’t really eat. I can last the full day on a cup of tea and a few biscuits.
I’m not trying to lose weight; I just don’t feel hungry or the need to eat. I think I live on air. Mum was always the same, she lived on coffee – I could never understood how she done it, but slowly as I have got older I have fell into the same pattern.
Then exercising. I used to go to the gym, in fact at one point I actually enjoyed it. Now the fear of going is too much. I feel like everyone watches what you’re doing (and when you’re not an athletic person this can be intimidating). So, the gym isn’t for me. I am trying to get into different types of exercise, but I haven’t yet found something that I enjoy and look forward to…
Getting enough sleep.
My problem in this area is that I actually get too much, and I am always tired. I am anaemic which means I have a deficiency in iron – I have tried taking vitamins, but it doesn’t seem to improve much. They say that your sleeping is linked to your mood – I feel safe in my bed; I feel comfortable asleep and I think that is why I have so much.
When it actually comes to doing all three things above, I find it so difficult. I don’t understand how people can have their lives together so much that they achieve all three, are happy and still manage to have a life. To me there is just not enough time in the day (probably because I sleep most of it).
The best of it all is, is that I am not even my sisters carer. I only look after her while at home – my mum has her 24/7. We get respite, where Terri attends the local hospice for a couple of nights every other month – but even though she isn’t their to physically look after, the worries and mental strain doesn’t go away. I can only imagine that if I just as a sibling, can feel like this - how on earth do mums and dads do it.
As I have mentioned in previous blogs my mental health over the past couple of years has deteriorated (that, or I have just actually started paying attention to my body). I don’t understand it myself – the big things I can deal with quite well, stick it to the back of my mind and get on with it – so, things like Terri’s health, worrying about my family. Little things are what tips me over. For instance, in work I made a minor error (I wasn’t told off or anything like that) but I cried and shook, because all of a sudden, my brain couldn’t deal.
Is it that everything is building up or am I just soft?
Who even knows?
This blog was me trying to start to look after myself, for me to find an outlet and maybe ease the mental burden. In some ways I think it is working and in others, I think I am learning about myself – I don’t think I have ever really sat and thought about everything – got it all out and sorted out and understood how I feel. On the other hand, I am admitting to myself that it is not easy. I am not as strong as everyone believes. A bit thing to remember - do not ever be embarrassed to admit how you feel - thoughts you keep in, carry more weight than you think.
This probably doesn't seem linked to the rest of the blog in a way - but I can only imagine how many other parents/siblings have been through a time similar to the above. Just know, if you feel like this, you are not alone.
What we are doing, as families of those with Cockayne Syndrome (or those caring for any special needs child), isn’t brave or inspiring, we are just doing our job, what we have to do, because we love them.
No one is perfect and everyone has their vices. Just remember - no matter what your situation...
LOOK AFTER YOURSELF
-Jody Patricia
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