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
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.
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.
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.
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!
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.
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
I’m so sorry to be hearing this Anne. i too suffer with chronic pain for 24 years, but feel I have to justify myself all the time as I travel, go swimming, dog park, shop etc. I have a neck injury and nerve damage and it affects my fine motor skills such as writing, cleaning, ironing, driving, typing, drying my hair etc. But the pain is there all the time, just aggravated when I complete similar tasks.
Back in May one of my twitter friends took his own life after suffering with chronic pain as he was almost bed bound, so sad for his family and for him feeling there was nothing that could be done. My acceptance point came after several visits to the pain management clinic around 15 years ago, it doesn’t make life easier or less painful, or even get other people to accept it, it just helps me stop focusing for a cure and relying on medication. I have you manage to get your wet room and grab rails sorted without too much hassle.
Please do not give up. My brother lived with chronic illness for many years, yet he kept a great attitude and a great fighting spirit to the end. Because of him, I learned a whole lot about how to heal the body with food. What’s your chronic illness? Perhaps I can help you feel better.
Call that woman back to get the lift and the other help you need. Maybe she didn’t reply because of the holiday weekend or something else but call her back. Don’t take her lack of reply personal. My heart goes out to you.
Thanks for joining us again, Anne, and for being such a wonderful member of this cosy little community! It seems that many of us have similar threads of thoughts even though we have different illnesses, circumstances and lives. In a strange way, pain is a powerful connector. It is such a raw, human thing and just makes you realise how fragile we all really are. Sending love. Know that you are definitely not alone x
Hello Ann, sorry you are in such a low place emotionally! I went through a period of suicidal ideation myself and it’s really rough to manage. There is hope though, and while acknowledging how disabling your condition can be is painful, it’s often a necessary step towards greater self-acceptance and finding the right personal balance of expectations and energy – the better you can define what you can do on a ‘good’ or ‘bad’ day, the better you can manage your days to increase your good ones! Also, while getting mobility or balance aids may feel limiting, they can also give you more freedom by reducing how much energy/spoons those day-to-day activities take! Any energy saved in survival activities can help you do more fun or productive things. I’ll echo Yvonne in urging you to call the woman again for support, and remind you that accepting your limitations is the first step to finding solutions to them! Also, if your antidepressants aren’t helping, maybe you need to try a different type – there are a lot out there and each of us has our own unique body chemistry that interacts differently with different drugs. *hugs* and hope for healing!
Hi Ann. I’m sorry you are struggling emotionally at the moment. We go through so much living with chronic illness and pain, often people underestimate the emotional toll this takes. I have been where you are, but things do get better. Take care x
Your post really resonated with me this month. I’m so sorry the black dog nipped your heel this time but you keeping it on a leash gave me great hope for my own. “There is nothing more enlightening that realising that someone else is losing their fight when you are thinking of ending yours. ” This is so very true. It gives us great perspective, while our emotional pain is completely valid, watching someone else cling to their own life renews our armour to face more battle. I do hope you get your aids quickly from your health provider. I’ll be thinking of you this month ahead, take care xx
Hello again Anne, I am sorry to read that you are struggling emotionally, I know this can be just as difficult as physically struggling. I hope things improve for you soon, and know that you are not alone. Take care x
You are really brave! Also, you are in the right direction. In chronic ailments, it is important to identify the triggers that sets the pain and discomfort. No two cases are similar. If you need help, then please fill up this questionaire, we will revert back as early as we can: https://franklincardiovascular.com/autonomic-questionnaires/