Sometimes You Need Tough Love: Staying Positive With A Chronic Illness
I have a chronic pain condition called Trigeminal Neuralgia and I’m often asked how I stay so positive.
Generally, I can be quite a negative, grumpy person. I complain a lot, I’m hard to please, but in terms of my chronic illness, I’m actually kind of a ‘glass half full’ person. This is down to my now husband.
When I was first in pain (July 2015) and first diagnosed (September 2015), I was miserable. I couldn’t move out of bed and I was suffering from a horrible depression. I used to go to work, come home from work and crawl straight into bed. This got slightly better when I got my kittens. Instead of getting straight into bed after work, I’d look after them and then snuggle up on the sofa with them. I wouldn’t leave the flat, I wouldn’t see friends, I wouldn’t do anything.
My pain was all consuming physically, but I struggled a lot with the emotional and mental aspect of being in pain all the time. I’d gone from being fairly healthy to suddenly being told I was sick, with no cure, for the rest of my life. That’s a horrible reality to be faced with and I don’t blame anyone for negativity in that situation. When I had to see a therapist in early 2016 for depression, I wasn’t ashamed. I think it would be strange not to be depressed after such a life altering diagnosis.
I remember being in a really bad place. I had no energy to move. I didn’t want to kill myself – I have never had any specifically suicidal thoughts – but I’m sure had I had any more energy then I might have been thinking about it. When I look back, I can remember exactly how I felt. I can remember exactly what I was thinking.
And then along came my wake up call.
I must have been hard work for my boyfriend (now husband) at the time. He made me soft foods, ran to the chemist and the doctors for me, took me to all my appointments, tidied the house, did the washing and literally took care of everything around the house and me for months on end.
I remember him standing over me in bed, where I was curled up, probably hadn’t moved in a couple of days over the weekend, giving me a massive telling off. In fact, I think telling off is putting it a bit lightly. That is the single reason I am like I am today. That’s the reason I survive like I do. That’s the reason I get on with it so well.
I would have been happy to lie in bed forever.
He had asked me if I wanted to get up and I’d said no. He’d told me to get up and I’d said no.. and then he must have reached the end of his tether. He told me a few home truths that I needed to hear and, although it was hurtful at the time, what he said saved my life. Although harsh, these truths were the best thing he’s ever done for me and I didn’t realise how much I needed them at the time.
This is your life now. You just have to get on with it.
You won’t have energy again/be completely well again/feel up to it again. Maybe ever. This is it now. This might be the best you feel forever.
We still have a life to live. Whether you’re in pain or not, you still have to go to work and look after the house, go out with family and friends, pay the bills and look after your pets.
Feeling sorry for yourself isn’t going to fix this. You are allowed to be sad, but not all day every day.
Sometimes you need putting in your place. It was all said with only love and kindess and my best interests at heart. I was shocked and upset, but I got out of bed. He actually took me to one of my favourite places on earth that day too and we had an amazing time. It was my turning point and the start of my journey into acceptance and happiness.
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That’s great – for you. But with permanent brain damage that causes far more pain than TN (because of being electrocuted, the nerves in my skull have been fried – I lived with TN for a year. It WAS awful, and it’s a miracle that it simply went away,but it doesn’t compare to the head pain I feel every single day for the last 27 years). This la-de-da attitude is offensive to me. If anyone believes that I choose to live in agony, then they’re ignorant of my condition or completely unsympathetic. I WISH I could get out with friends and play the sports I used to love. Thanks for sharing your story. Just don’t forget that there are many far worse than you and they can’t “choose” to simply be happy with their pain.
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I don’t have a la-de-da attitude to pain and I don’t simply CHOOSE to not be in pain. I am in pain, nothing will change that, but I choose to have a good attitude about it.
I never said you could choose not to be in pain and I’ve said on this post that I don’t judge anyone who feels negatively about their pain.
I simply answered the question about where MY positivity comes from and I’ve also written a blog post about people who judge me for being in “less” pain than them, if you’d like to look that up too?
I’m sorry this offended you. ♡
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Keep being You plus keep shining your radiant wonderful light! Optimists will always offend others sad to say yet true, yet do not let them ever ever dim your light or make you feel ashamed for daring to be happy/choose a positive mindset in spite of everything you are challenged with , that you are choosing to be a phoenix- rising up above the pain, for You are clearly on the right path(the pain corner) truly you are plus your words will be a beacon of hope plus guidance to many many people!! Am a fellow optimist and Sisu warrior. We are misunderstood by fellow people with chronic pain plus some ‘normals’(those without chronic pain) think we are stronger than we are or not as challenged just because we have such a thriver mindset! We all do need a gentle kick though to stop feeling sorry for ourselves/wallowing- just like your boyfriend helped you- we need either to pull ourselves up when having a pity party or someone else needs to give them a push. Never ever apologise for being You- the world needs more people like You infact!! Sending a circle of protection around You right here right now. Namaste, Clarita 🙂
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By the way -have moderate severe to severe pain(constantly plus fluctuates between two) and have several chronic pain conditions- FMS, CFS, Migraines- several each month, Osteoarthritis, Costochondritis, Raynauds, and am a Coeliac. Migraines started at the age of 15. FMS started at the age of 23(diagnosed at age 24) and am now 45 years young.
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Thank you for your lovely comment! ❤