Writing Prompts for July – Justifying a Chronic Illness

Justifying, Starting, Analysing, Concluding, Planning

Each month I join in with a linky for those suffering with chronic illnesses. The lovely Sheryl from A Chronic Voice gives us some prompts to start talking about how we are feeling. It gives us a chance to write about things we normally wouldn’t talk about and by linking up we have become a community of people who understand. But, by writing these posts we also have the opportunity to explain to others just what it is like living with a chronic illness. This months prompts are justifying, starting, analysing, concludcing and planning.

Trigger Warning: This post mentions suicidal thoughts

Justifying

As most people with a chronic illness will understand, Justifying ourselves is something we are most familiar with. My family are always telling me I don’t need to justify myself for needing extra time to relax and recover when I’m not at my best. The problem is, I don’t actually have a best.

I am ill all the time, every day I feel like crap. Sometimes, I honestly feel like I cannot go on like this. Resting maybe helps me from total burn out, but it doesn’t really matter, when my body goes into spasm it doesn’t care about what needs to be done.

My family do not expect me to apologise for sleeping and not being able to move for hours on end. There is no need to be justifying myself.

But how can I make myself see that? I don’t need to justify myself, but I still feel guilty, because this is not me. I am used to doing everything, being in charge, taking control, being the rock of the family. But in the last three years I feel like I’m the rock that’s making us all sink to the bottom of the lake.

Starting

I know it’s been over three years, but recently I’ve been starting to accept that I have to make plans. Recently I was offered help from a health visitor. She arranged for a few extra bars to be put in place so I have more places to grab when I need to stand. Then she offered to turn my bathroom into a wet room and put a lift in my house. She believes I wouldn’t be safe on a stair lift so that was not an option.

I turned her down.

It was at that point that I realised I’d not accepted just how ill I am and that it‘s not going to get better. For three and a half years I have been searching for a cure to make me better, when in reality there isn’t one.

So, now it’s starting to sink in. I tried calling her back to change my mind but reached her answer phone and she never replied. Now, it’s too late and if I want the wet room and lift, I will have to start the process again. I don’t know if I was lucky, but it went through pretty quick last time I made my enquiries, so maybe I wouldn’t have to wait too long. But, I’m only starting to accept that they are what I need, so I’m holding off a little longer.

Analysing

I sometimes wonder if my diagnosis is correct. But it’s hard comparing yourself to other sufferers when you suffer from something so rare. So I’ve been analysing my condition more closely, finding out what makes me worse and what makes me better. I’ve also been taking a closer look at my medication and analysing what they are doing for me.

While I was at a real low point recently I asked Google about how many of my pills I’d need to take to end it all. Not just the pain. All of it, all of me. Selfish I know and I couldn’t do that to my children and my husband and family. So, I thought what would happen if I just stopped taking my medication suddenly. Then it wouldn’t look like suicide would it?

I get these low points sometimes, but I don’t want to hurt my family, so I know I wouldn’t go through with it.

Then I was researching care homes. That way, I could just get away from it all, take away all the pressure off me to ‘perform’ a normal life, and all the pressure off my family for dealing with me. But, I would miss my family too much.

Analysing my feelings I realised that I was depressed. I am depressed. I always have that black dog biting at my heels. But I keep him on his leash. Too much life in me just yet.

Concluding

My conclusion is that I need help. My GP would probably just offer me more pills to my huge collection. I already take anti-depressants, so what’s the point.

I need to help myself and that’s my next plan!

Planning

So, we come on to planning. Keeping busy with things helps a lot. I love my crochet and listening to my audio books. I also love planning, so much to plan for and that’s what keeps me going.

We’ve just celebrated the first birthday of four in the next six weeks. So, it’s Boo’s birthday next so I need to plan some treats for her. Then a couple of weeks later it’s the Little Man’s birthday. Just two days after the Little Man’s birthday we go away to Cornwall. I haven’t been to Cornwall for many years so that’s something to really look forward to. Then a few days after we get home it will be Star’s birthday.

So much to look forward to, so much planning to do. There is no time at all to think about how crap and useless I feel. Even if the best I can do is plan from my laptop, or my book of lists, then that’s what I will do.

Selfish

Not one of the prompts but something I wanted to add. One of the things that made me realise that I couldn’t go ahead with ending things is that one of my longtime online friends is currently in a hospice after a long battle with cancer. She fought long and hard and tried everything to stay alive. She was doing it because of her family. My heart goes out to them.

Thinking about her made me realise that I was being selfish. My family need me too, and although I may have to leave them at some point, I‘m going to fight this stupid condition to ensure it won’t take me anytime soon. There is nothing more enlightening that realising that someone else is losing their fight when you are thinking of ending yours.

I’m in it for the long run, if I become even more useless I’ll still be here to watch my children grow and live their lives. I’m not going anywhere without a fight.

June’s writing prompts can be found here