So this is me on a pretty bad day, not the worst, but getting there! (I have no idea what is going on with the droopy eye lid, not a good sign) but this is me. No make up, on the sofa, exhausted and in pain so bad my clothes are hurting me. No cat snuggles today! 😿
So I’ve decided that today is honest self advocacy day!
😃 I post happy smiley pictures of myself as I am a positive happy person. I post when I’m doing fun things, or feeling happy. 😃
But underneath that, all the time, everyday I am in pain and always fatigued.
Sometimes it’s not too bad and some days I don’t notice it as much as my tablets work their wonders. Other days I need a walking stick to help me with distance and stability and I need to be really careful with what I do to minimise pain. Worse days I need to walk very slowly with my stick and doing anything hurts a lot. Bad days I can’t leave the house as I’m in too much pain and can’t walk very far at all. Really bad days I struggle to get from my bed or sofa to the bathroom (my flat is tiny) and horrible days I need someone to help me, to get up and get to the loo, to lift my drink to my mouth, to cut up my food. Thankfully these days are few and far between, but they are utterly horrific! Everyday I need to think about every single thing that I do to minimise pain and fatigue and try to do the essential things everyday. (The spoon theory or my blog post from last week explain this a bit more)
It’s really difficult to explain, not consistent and looking at this picture, I still don’t look too bad! Stick on a smile and some mascara and there’s no difference! 😄
This is why I feel like that, why my body just doesn’t work like other people’s. I have PBC (link to the NHS website below) I also have hypotension, gastritis, a hiatus hernia and was diagnosed with ME when I was a teenager.
Luckily my PBC is not advanced and I don’t have any cirrhosis of my liver which is brilliant, but I do have the chronic fatigue, joint and muscle pain, itching and all of the symptoms that then occur from these other ones…brain fog, clumsiness, disorientation, sleep problems, dry eyes, mouth and skin. Alongside this the hypotension causes dizziness and fainting and the gastritis and hernia cause pain and heartburn. Add in the side effects of the tablets I take, weight gain, constipation, fatigue (seems to pop up everywhere) and you’ve got a fab mix going on!
😷 And today I’ve got a cold. My sinuses are blocked and painful so my whole head and face hurts, I feel nauseous and my pain levels have increased to the stage that I feel like on days that I forget to take my painkillers, or before I got the levels right. (Bad days) 🤒
I’ve had my tens machine on all day, a hot water bottle on and off as my temperature has been changing. I’ve drank loads of water, eaten lots of fruit, veg and Quorn for protein and added sudafed into my many tablets to help as its the only thing I can take! (I checked with the chemist this morning)
This is the first cold I’ve had this year, (all 6 weeks of it) but the last one I had I couldn’t shake for 4 months so I’ve been researching cold and flu treatments…and discovered that there’s not really much you can do over drink lots of water, eat well, take paracetamol and rest 😁😤
So off to bed I go hoping that I’ll be feeling better tomorrow. But ill never feel totally better. My condition is incurable so I’ve had to come to terms with the fact that I’ll live with this everyday of my life.
So I choose to enjoy my life, to find the good things and share the fun things. To keep some of this to myself because I don’t want sympathy or pity. I share what I feel is enough to gain understanding and to be able to ask for help when I need to. The rest is up to me to divulge or not.
An invisible illness is very difficult to explain or understand, so should we share more? Should we be believed and understood without having to explain everything? Is equality an unrealistic concept? (For anyone with a protected characteristic, not just the disabled)
I’m still not sure where I stand on this. I do want to share, to educate and advocate, but I also want to keep some things to myself…what do you think? Is Morgan freeman right to not want to discuss his fibromyalgia? As a public figure should he use his fame to advocate for the condition or is that up to him to decide?
If you want to share any conditions that you have I’d love to hear about them. ☺️