Tag Archives: illness

Don’t wish your life away

 

There’s nothing like a funeral to put things in perspective, especially one of a family member, and last week was no exception for me. What resonated most was a reading that was given, and I know I was not alone in walking away feeling like something had to change, I had to change.

...
For it matters not, how much we own,
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.

So, think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left
that can still be rearranged.
...

From 'The Dash' - read the whole poem here.

The ‘dash’ in this poem being the short line between the year of our birth and that of our death. How would someone reading your own eulogy describe what you did in that time, in your life?

It’s something that has been on my mind a lot recently – somewhat of a inter-quarter/mid life crisis. Do I know what am I doing with my life? Is it what I want to do? Am I achieving anything of note? Am I treating people how I would like to be treated myself? Am I acting in the manner that I would like to be best remembered?

I’m pretty sure the answer to all of those questions is ‘no’.

I am almost certainly muddling along from day-to-day. Wasting my life beating myself up, feeling miserable, feeling lonely, waiting to feel ‘well’, being selfish and self-involved, longing for the weekend or the next holiday, sitting at home moaning that I’m doing nothing, wanting it to be Friday when it’s only Monday.

It feels very late in life to be working out who I am but there is still plenty of time to ‘rearrange’ and there’s certainly a whole lot of Monday to Friday, unplanned weekends and moments of feeling vaguely human that I should be making more of.

Time to stop wishing my life away and do something with my ‘dash’.

 

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The Struggle

So I’m ill. Chronically ill. So I will always be ill. Sometimes I might feel worse or a bit better than others, but there is no cure for what I have. This is probably one of the hardest things I have ever had to get my head around, aside from depression. 

I wasn’t ever allowed time off from school as a child, unless my arm had fallen off or something and I carried that through with me to adult life. I feel guilty when I’m ill and need time off. I feel bad that I need to lay there and do nothing quite a lot of the time.

Since my diagnosis, I’ve been learning a lot more about my two conditions and things make a lot more sense now. I always wondered why when I felt at my worst, the thought of anything but the saltiest food imaginable made me feel sick. Well, it turns out that salt makes me feel better and I’m encouraged to eat more of it (I also take Kelp tablets and magnesium supplements so that I don’t have to eat so much of it).

Anyhow.

I’ve not made that many drastic changes to my daily life. I drink a lot more water, I eat a lot better and more selectively, I work a day from home to try and limit my travel time, I try and walk more for some steady exercise….but that’s about it. I still work a 9-5.30, busy job and commute to London. I still do the cooking, cleaning etc. I still do my best to go out and about and live a life….. but GOD, sometimes this is hard.

I forget you see. I forget that I’m ill. Not just a common cold ill but really, I have quite big, potentially serious things wrong with me. I read about people with my condition who are wheelchair bound, who can’t support their own heads or eat solid food or manage to leave the house. I am forever grateful that I don’t have the symptoms that severly but this is a condition that changes, there’s no saying it couldn’t get worse.

Sometimes I am almost normal….sometimes I am so exhausted, that I can barely stand up. Not just tired. When I say to someone ‘I’m really tired’ and they say ‘oh me too’, I don’t bother to laugh or say they have no idea, but they probably don’t. It’s not tired like you need an extra hour, it’s tired like you’ve not slept at all for a week and then flown a few long haul flights. My legs don’t work and I misjudge spaces and walk into things, my hands cramp and ache, my body is lead and jelly at the same time. I mix words up and can’t hold a thought. My stomach stops working and won’t digest anything. I can’t breathe properly. I’ll get a migraine so bad that I think I’m going to vomit, stop breathing and maybe black out.

But I forget all this and get cross at myself for not being able to do everything. For wishing I could have a few days a week off. For not being able to go to everything or stay to the end on nights out. For me, it’s just normal but sometimes I really do have to force myself to remember that it’s not normal at all and to cut myself a little slack.

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Depression: a little understanding

I’m aware that a lot of people are unsure how to deal with it when I have a ‘turn’ or let’s be honest, when I get depressed, again.

Although it will never be as bad as it was that first time – once you actually KNOW that you’re depressed, the signs, what to look out for and how to cope with it a little better, I think falling quite so deep into that spiral happens less often – it does happen, and it doesn’t take someone dying, or having a fatal disease, or being penniless. That’s what I always thought. I can’t be depressed, can I? I have no reason to be. Well, brains and brain chemistry, genetics, thought and behavioural patterns don’t work like that. Most of the time it just sneaks up on me, often when I have a lot going on in my life at the same time. It all adds up.

Imagine if you will, one of those joke tins where you open the lid and the fake springy snake pops out? It’s like that….. all the thoughts and stresses and worries of life are being stuffed into the tin and at some point or another, one of them is just too many and the lid just pops right off and that’s me done, I can’t manage to stuff it all back in, I have to sit and deal with it all.

It’s not all about being sad and crying and moping around (although I do tend to cry an awful lot, at the drop of a hat at these times, mostly through the pure frustration and helplessness that I feel in that situation) and it most certainly isn’t about ‘cheering up’, ‘thinking positive’ or ‘pulling myself together’ or any other of the nonsense that someone who has never experienced depression will no doubt say.

It’s about nothing. You feel empty right where there should be joy or rage or in fact any emotion. You feel bereft of anything, rather pointless really. You’re not all that sure why you are put on God’s green Earth because you’re not worth the shit on someone’s shoe.

Getting up is a struggle, being awake seems like the most difficult thing in the world. Being around other people is exhausting because it’s taking everything you have to pretend that you’re there, to nod and smile and make the right noises in the places where you think you should. It’s pretty much taking all that you have not to get up and walk away as quick as you can, back home to where it’s just you, where you feel safe.

The most I will feel during this time is a knot, right at the centre of my chest, a physical sensation that everything is completely tangled up and I have no idea where the start or the end is.

So I back off from everything and everyone for a while. I go to work because I have to but apart from that, I do little else. I say no when I’m invited out, I stay home and mostly in bed. I don’t even go to the shops because I can’t stand people looking at me. Sometimes, I’ll get ready to go out just to get a little way down the road and not want to do it any more. I will get so upset that I will turn around and go home. At my worst, I would force myself out, only to get there, think that everyone was looking at me and thinking how absolutely disgusting I was, have a panic attack and have to leave and go home, feeling even worse about myself. Thankfully, after medication, a fair bit of therapy and successful hypnosis for some awful confidence issues, it’s not this bad.

But this is where the problems lie with relationships, you have to work at them. When I’m having a bad time, I back off, and go quiet and non communicative. People then quite rightly back off in return, they don’t hear from me, or I always say no to invitations, so there’s no contact…and the less contact there is, the less I want and the harder I find it to make contact again.

I know that when you haven’t had any experience of something, it’s very hard to understand. When you’re a positive, outgoing, confident, optimistic person, you don’t see how the smallest thing (a bus driver shouting at you that no, he doesn’t go to Goodge Street) can play on your mind and send you spiraling into an internal monologue of self-doubt but please, try to be emphatic. Try and see. Because honestly, the very worst thing that you can do is turn the other way and ignore it. To tell someone that nothing is wrong, that they shouldn’t feel the way they do. Believe me, they wish with everything that they didn’t feel like this, that they could stop the whirling negativity that constantly spins around their head telling them that they aren’t good enough or how stupid they were to just say that or do whatever it is they just did.

If you really can’t get your head around it, just have a little compassion, drop them a text, tell them you’re there and be there for them when they occasionally pop out of the black cloud. Depression can be terrifying, don’t let someone be terrified and alone.

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